The Wild Wild Wests

hospitals..../stream of consciousness

2012-01-31T00:04:00.000-08:00

We got the text last night around 12 that Dad was going to the hospital. He has been sick for days with what we thought was the flu, but it turns out he has colitis and he is now enjoying his cocktail of morphine. As per usual his hospital room was filled with people and jokes were flying off the walls as if it were any ordinary day. As much pain as he was in, I believe this happened to force him to sit still for more than an hour. He has no choice but to lay there and get the rest he needs. If there is anything I have learned from having to sit for hours an days on end in a hospital room it's to rest and to take care of yourself. My Dad and I are both by nature very high strung people. We go until we fall down, or get a migraine or well...colitis. I gave myself 3, yes 3 shots today to get rid of a migraine. I was positive I was next in line for a hospital trip, but after 3 rounds of "shark medicine" I am at least able to write. Which leads me back to my point of resting and taking care of yourselves. I fall off that wagon far to much, but just as my dad is, I too am a work in progress. Aren't we all just that? Works in progress.
You should also know that "shark medicine" is shots. I don't know where the boys got it from, I am guessing a cartoon, but thats their lingo and we all know their words become mine.

I also visited my Nana in the nursing home this afternoon. The Nana that was completely fine until she fell and broke her hip just after Christmas. I told my sister after we left that when I get to that stage of my life, do not, and I repeat do NOT, ever put me in one of those places. Just set me out to sea with a large bottle of vodka.
Moving on...

This past Friday was date night with my two older boys. I took them to their first Hibachi grill. They thought they were so cool and I just melted watching their faces. Austin told me when he gets big that he will take me to date night on Daddys motorcycle. What he doesn't know is that I will have to be 10 feet under before I let him get on one. Regardless my heart melted. I have the. best. boys. in the world.

no seriously mase, take a load off :0 and austin "wears his sunglasses at nighttt..... (tell me y'all know that song...)

I am not going to sugar coat it. I am starting to panic about the coming months. Like really freak. I wish this were like other things in life.

UPDATE: went to bed last night while trying to finish the above post, but felt that once head bobbing began it was time to shut down for the night and lookie there now... it is 2:14 A.M. the very next night...oh' wait that would be morning duh! Yah. I'm awake. Maybe my vampirish sleep/wake cycle might have something to do with being sick for like every day for the past 3 weeks. Woke up today with a 101 fever. I slept, like a lot, thanks to a good friend of mine who might be a doctor and no she isn't open for writing scripts so don't ask, who told me that the very best " medicine" for me right now is....wait for it.... SLEEP! Shocked you all didn't I. So I slept for 3 hours straight then pulled my nappy self together to head for a 6 pm occupational therapy conference. I was sweating profusely the entire two hours we were there, I coughed so much I peed, but I went because I was not about to postpone one.more.damn.thing. in my life from "not feeling well". I am surprised my friends...all 3 of them, even still talk to me because if it ain't one thing its another. I swear I annoy myself so I must annoy them, but hey there's five of us in this house. Two who don't sleep and heaven forbid the two who don't sleep actually sleep at the same time. Oh' no. I will finally pass out tonight around 3 and no sleep boy will come wake me up around 4:30 and the two of us will start this ridonkulous routine of ours all over again and two days from now my cold will turn into pneumonia and I will feign not knowing why...
I have benadryl and nyquil on board. Still awake and still hacking. Don't waste your money folks. Oh' and did I mention that Mason has this thing I apparently now own and is coughing now too. 5 of us I tell you, we just make a game of duck duck goose out of our illnesses.
Holy run on sentence batman. I am just gonna say that right now life is a bit of a drag. I want my energy back. I want normal back. I want to look at the calendar and not see appointment after appointment lined up for doctor after doctor. It's not going to happen, but a girl can dream right. I thought of so many things I wanted to say today. So many things I wanted to write about, but then I just really wished dad would share his morphine with me so I could feel better and then I wouldn't be knee deep in another pity party with myself. Some days just suck the big one (erh..... no pun intended) and I cry. I cry like a little 3 year old at the unfairness of it all. I don't feel empowered right now. I don't feel like day to day I am focused on the present but rather what lie ahead, yet what does worrying today bring me tomorrow... I know all of this. I tell myself all of the time. Logically my brain does have some knowledge to it, but illogically my heart wins and so do all of the feelings that come with that. Mommy guilt right now is all consuming. I can't be sick, don't have time to be sick, need to spend every waking moment with Pax just in case something happens to him that way I can say I never didn't spend a minute doing anything but loving on him. Irrational much? Yes, but when you know that Mount Kilimanjaro lies ahead you want to prepare as much as you can. I want to sleep with him but I can't because my 100 year old lung cancer sounding self wouldn't allow him to get any rest so I can't. I am mad jealous at the hubs right now and his ability to shut down. With no meds or anything. Impressive. I love that my brain is so chock full of love for my boy that nothing can shut it down when it isnt' ready, but I spend a large amount of time wallowing in jealousy for men. They don't feel as deeply as women do, especially women with their sick babies. They are able to turn it off, like a tv set or something and I stand there with my jaw on the floor when I hear the snoring 5 minutes later. Like really, how is that even possible. I am told men are driven my food, sex and money. I say that's so not even fair. Why do women remember everything, get their periods, endure childbirth, have to be the Mommy with mad Mommy guilt because lets be real here at 2 f ing 40 in the morning. There's a depth to being the mom and there's a lack of depth in being the dad and right now as my husband snores in the other room I am dripping with jealousy that I can't be the lack of depth right now. I would never, EVER, EVER change being a Mom, but I will never go back to the freedom that I once had when I was 23 years old. And I don't mean the freedom to go out and party and not answer to anyone freedom ( I never partied. No seriously ; )
I am talking about the freedom to not have your heart divided among 3 of the most perfect boys in the world. The freedom to not worry every minute of every single day. It was a gift I most certainly took for granted. Yet a gift I would trade nothing to have back.
I am rambling. I am exhausted and tomorrow, damnit, toDAY is coming all to fast. Hello McDonalds diet coke I beg of you not to let me down tomorrow.
On that note I leave you with this:

My thoughts exactly Dad!

Love and Hugs,
~J

2012-01-26T21:09:00.000-08:00

Good heavens do I feel like I have lived a whole nother (and yes I just made up my own word thanks) lifetime since I last blogged. SOOO many pictures. So many changes. Like a lotta lotta changes. Some good and some scary, but how would the good be good without those times that seem to strangle us with worry. It is a process I will never fully learn. I grow and evolve in that process daily. Have I cried today~ oh hell to the yes. Have I also rallied~mmm hmm! Cause thats what I do. I have no choice. Today though I can say that I really and truly cried right in front of the boys. I am not sure I can say I have ever allowed myself to just break down in front of them. I pride myself on that, but today oh' today, I bent over to turn on Masons new lava lamp (cause what 4 year old doesn't have a lava lamp, oh right just the West boys) and hit my head very hard on the windowsill. I covered my face trying not to cry, but then a part of me said wait a second, the boys need to know that mommy gets hurt too and lord if the floodgates didn't open. Reality is there was a lot more than a goose egg to the head behind those tears, but it felt good. I dropped into the rocking chair and cried. Like hot tears. Mason immediately screamed for his big brother "Aust, Mommy's cryingggg", to which my golden boy came around the corner, took one look at me and high tailed it screaming to the other room.

no really austin don't look so happy to be taking a pic with me

He can't handle anyone upset~gee wonder where he gets that from. Mason, my 4 going on 40 year old, crawled right up in my lap and wrapped his arms around me saying "it's ok Mommy, it's ok." The sweetness of it all made me cry harder, but that should be no shock to anyone. I cry when I am sad. I cry when I am happy, mad, or grumpy. Austin eventually came back in and kissed my head. Pax, well he just put himself on repeat saying "you got boo boo Mommy, you got boo boo?". In the end, I put an end to waterworks and went to get snacks for naptime. Mason followed behind and all of a sudden says "good job not crying now Mommy." I replied with a thank you. To which he said "lets shake on it." And I did. 4 going on 40 people!

Lesson being that it's ok to let your kids see you cry sometimes. It's life and part of life is understanding that everyone, even Mommy has rough days. Milestone reached.

On that note: lets get on to the fun stuff. Yah we have fun too. Those of you that know us know that man we are a loud, wild bunch. Wild Wests~ get it ; ) Which is why this sign is the first thing you see upon entering our house. Don't say I didn't warn ya...

I'm forever chasing someone, telling someone to stop screaming right! this! instant! and I mean it this time boys. : ) that's about how it plays out. Someone always has to pee, someone always needs a drink, snack, gum (they're obsessed), toy, something to do, someone to entertain them. It is a full time job. The only awesome thing is they have each other and there are definitely times that I allow them to be each others jungle gym, like when I am trying to cook dinner. The messes, the chipped walls, the stepping on a matchbox car and thinking I am going to die~ they are so worth it to hear the belly laughs that escape them.

We have been so busy, having fun. Isn't that what it's all about. Like oh' I don't know going to the beach when it's cold out with good friends in our Juicy jumpsuits because 60 degrees here is arctic to us.

hi hummus ; )

And I am not sure I've mentioned and if I have, I haven't mentioned it enough about how awesome my sister is. She is here every weekend to help me, to love on my boys and chase them around the house until I have to be all Momlike and tell her its time for bed cause girlfriend will go until she drops. She loves them and it melts me. She cooks for them, like really cooks for them and quite frankly gives me a lot to live up to. She's a clean freak, organizing fool and will find stuff to organize any time she can. She is there for me, even as a teenager whenever I need her, on my bad days and my good. She is already hoping we can plan Paxtons surgery on her spring break so she is able to help watch the boys while we are at the hospital. She is wise beyond her years and I am so grateful for her. Grateful that she loves to be with us and grateful that she is a goofball just like me and finds it fun to straddle sand alligators and take pictures of it! Yah we have a lot of goofball pics and a lot of sister fun fights with towels in a bathroom which leads to breaking lamps and posting embarrassing pics of the other on FB. We may be 16 years apart, but we are sisters and it shows. Love you dude.

twinsies!

We celebrated the New Year. A brand new year! I am SO stinking excited to see what it will bring. I am scared for the two months ahead, but once we make it through that hurdle, and we WILL make it right? Then we can focus forward. Fresh freaking start~HOLLA!

And I'll drink to thattt!

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We went to the circus with our friends and bought crap we didn't need, but man did we have fun!

We hit up the movies to see Dolphin Tale because who doesn't love a movie about a dolphin that gets a prosthetic tail and lives happily ever after. Anything can happens peeps, anything!

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We went to "Willys house" or as most know it, Sea World. My boys are obsessed with Free Willy and would no sooner know who Shamu is than Brad Pitt. So Willy's house it was! SO much fun.

oh hey there killer whale that eats people...

The dolphins were mesmerizing. I wanted to roll out my sleeping bag and lay there watching them cept' that would be totally awkward and I didn't have my sleeping bag.

Love this picture!

So I am not going to lie, Sea World has a bittersweet place in my heart. The last time I was there I was about 8 months pregnant with Paxton. It was in this exact spot above where the four of us stood last visit . One week before we found out that Paxton was so, so sick. I look at those pictures and think... man as I stood there I had no idea how my world was about to change. How I was about to be tested, broken and then strengthened. Then I look at my face above and can say I have literally been to hell and back and am all the better for it. Plus I wear socks with my "feet flops" and that's just cool right! So I was a little unprepared for arctic weather in the sunshine state, gahh!

Speaking of remembering everything, good God why can't women just let crap go. Took Austin to a new doctor today and it happens to be next door to the neonatal specialist that did the first ultrasound of Pax after our normal OB said a buh and bye to us. You know the d *%k of a doctor that told me "how significant the defect was." So what you want to say SIR is, holy hell are you guys f*#%ed. Well thank you for your kind words, I feel all the better now. I digress.

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From Sea World we raced home to surprise my Daddy who has recently lost 25 pounds at his half marathon race. He was surprised all right. He thought we were still in Tampa and said when he saw sister and I running back to cheer him on that he was hallucinating from dehydration, but he wasn't and he pounded out a kick a*% time. Heart attack at 39 what????

can ya tell i rolled outta bed for this one... here's a thought: try some cucumbers on those puffy eyes

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Beaching it with my gorgeous babes at sunset! Free therapy right there.

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We chilled on dirt roads and aside from having to drink to keep from having a panic attack at watching all 3, yes all 3 boys on 4 wheelers, mini motorcycles and the like, it was a blast! We stayed out way past their bedtimes because no one had the heart to tell their children that the fun was over. They ask every day to go back to "Miss Ann's" house.

My little P.I.M.P in his G wagon so fly...

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We got big boy haircuts and by big boy, I mean like all grown uppp!

Mason started it all with his buzz cut and his brothers insisted on following the trend.

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We got new beds, big boy beds and hammocks (for Austins sensory issues)

Austin loves his hammock! Sleeps in it every night. And Pax oh' my Pax loves, Loves, LOVES his big boy bed. He has yet to get out of it once when its nap or night time. I definitely cried on his first night realizing that this amazing boy lived to reach another milestone. It was in the corner of that same room that I sat in his nursery rocker pregnant, crying and wondering if he would survive birth. Booyah! How silly of me to doubt him. And Mason oh masey, those puffy cheeks. I promise one day I will stop kissing the hell out of them, but for now I eat them up while you let me.

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We just went to Cardiology and Paxtons oxygen saturations have dropped significantly. From 80-85 to 70-73 indicating that he is ready for his next open heart surgery. We go for a heart cath consult next week with the actual cath the week after which will determine how quickly we need to do the surgery. We were shooting for April, post RSV and flu season, but this last workup has his cardiologist doubting we will make it that far. He's blue. His body is fighting hard to function. He is constantly broken out in a rash. He is constantly panting. He is tired and it is so unbelievably hard for me to see him like that. And for the love of all things holy am I terrified to hand him over for the cath let alone the open heart. I sit here tonight not sure how I will do it, but I know in the end I will do what I have to do. No parent should have to do this and sit for 5 hours not knowing. I just want to be past these next two months. The terror that brims my body is beyond description. But as Dori would say " just keep swimming, swimming, swimming." One day at a time and on the really bad days one breath at a time.

I read this Pinterest quote daily. ( I love you pinterest) It reminds me that this is out of my control, so I remind myself to relish the now.

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This is now...

my favorite paxie face

...And it is heaven.

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Prayers for us in the weeks and months ahead will be forever appreciated. Mostly just pray for Pax. Pray he will be ok and two months from now I will look back on this post and say see!!!!

I promise to try and not make it so long next time! Seriously I mean it ; )

Hugs,

morning ramblings of a heart mama

2012-01-08T03:19:00.000-08:00

It is now 5:30 in the morning. I have been up since 2:45. I have officially given up on sleep. Ever. I want so badly to go somewhere far, far away and know that my kids are taken care of and just hole up in a bed for days on end and hibernate. Today I just want to know it's all going to be ok. I sit here watching my boys sleep on the cameras and I just want to know that they will all be ok. That through all of this they will be better, kinder, more compassionate people. I live in a state of constant fear and that is so draining. So taxing. I feel like I have nothing left at the end of the day. I feel so exhausted right now. Maybe it's because I don't actually ever sleep and this always come to a head at some point. I recover and then the same process starts all over. I feel guilty because I know people have it far, far worse than we do. I know there are many sleeping on that vinyl couch I know all to well in a hospital room right this very moment. That will be us again soon too. In spite of knowing this, I still get sad. I still am scared. I still want to fix it and I can't fix it. Will never be able to fix it. All I can do is take it one day at a time. I remember when Dave and I first met, we had all these dreams of a big family. Life doesn't always give you those dreams but it has a way of giving you what you need. What you can handle. While I may not be handling it in the best way possible for me i.e. lack of sleep. I like to think I am handling it well in Paxtons eyes. Other than this blog and on the couch in my counselors office I doubt it all. When I write here I do not feel judgement and on that couch, she is the only person that validates all that I carry around every day. She gets its. She makes me ok with it all. She tells me that I have PTSD (post traumatic stress disorder) and that that trauma never goes away, which it doesn't because every day I am in the midst of meds, cyanosis, inhalers, g tubes, stay or go, doctors appointments, keeping him free of illness and gearing up for round three of open heart surgery. This morning I sit here and wonder how it got like this. That picture we all make up in our heads of our lives, that picture has all but faded and new ones have taken its place. Harder ones yes, but harder doesn't always mean not better. I am tired. Tired of the constant worry. The constant fear. It leaves little room for anything else. Not a lot of people can see that part of it. That at the end of every day I am spent. I don't show it. No one see the scan I do of that baby boy all day every day checking him for color, breathing, alertness. If he sleeps to long I panic. If he doesn't sleep enough I panic. If he stands still for to long I panic. If he squats I panic because that means he can't get enough oxygen. Oh it never ends and today, in the wee hours, I am spent. I suppose its ok to have moments like this. I just wish I didn't. I wish I had slept like a normal person and had the ability to wake up refreshed and ready to face the day. Instead I will be dragging serious a*@. It is what it is though and I have no choice but to put one foot in front of the other. In moments like this morning I don't know how I will, but I always do. Somehow I am always graced with just enough reserve to make it. I will see his face and I will make it. For him. For them. I have always been honest on this blog, it's what makes it real. I have many posts that will make you pee yourself laughing and many like these where I just don't know where to go from here. It's how this journey rolls. Its how life rolls. You take the good with the bad. You take the good days and run with them and the bad, well you fumble your way through them. What I love most is looking back on these posts knowing I made it through them. There were many days I couldn't pick myself off of the floor and I was honest in that. Today though I look back at that honesty and am so grateful for it because I see that in my worst moments I can, will, and do pick myself up, dust off and carry on. Today I am fumbling. Today I am sad. Today I just want to cry and I probably will at some point, but I will make it. Paxton. He's here. He's home. I never lose sight of that gift. So now I will check out. I will try to catch a few minutes of sleep before 3 little boys wake up refreshed and ready to go. I will douse myself in diet coke, put on my Mommy smile and put one foot in front of the other. The gray hairs and the wrinkles are my bodies tell tale sign of whats going on on the inside, but my boys know no better, so inside it will stay. For them. Everything for them.

A Belated Birthday Letter

2012-01-04T07:31:00.000-08:00

It is now 2012 and I am finally just now writing Paxtons birthday letter. I have been putting it off for quite some time, obviously, I guess I just wasn't ready to delve that deep. To shed the tears of fear, the joy, the hardships, the love.
I recently started therapy again for as his next surgery approaches my anxiety has heightened. I am on large doses of sleeping pills to no avail. I was awake the other night at 2 am upstairs eating guac and chips reading the hours away. No drug can conquer a Mommys fear. I stopped laying in bed letting my mind get the best of me and started reading instead.

Today I am ready.

Dear Paxton,

I am not sure words are capable of expressing the depth of my love for you. Oh' I would love you just the same were you healthy, but there is something about seeing you so close to death. Clinging for your life time and again that adds an entire other element to us. I am the one who can calm you at any given time. My voice softly reminding you that "it's allllright." over and over soothes you, calms you. There is a part of you, even as young as you are, that knows I have been there all along. Through the hurt, the surgeries, the hospital stays, the appointments, the poking, the prodding. There many times I thought you would not love me as much because being there through it all also means being the one to hold you down while they poke you, inject you, scan you, xray you with your body encased in a machine while I am forced to hold your arms up. You still love me though, if not more for it somehow. What I will tell you is it kills me to be that person, but I also couldn't not be there, ever. I will never not be there Paxton David. Even if it hurts to depths of my core to see you in pain, I will be by your side stoic as a statue because if you must endure it so too will I. I can't take it away for you so the very least I can do is be strong through it all for you. I am SO proud of you. So proud of your strength and your ability to smile through it all. So proud of how you take your meds all day every day like a cake walk. So proud that you leave your feeding tube alone and let everyone know it's "just your boo boo". So proud that you don't take crap from anyone especially your brothers. So proud that you weigh 29 pounds and can't stop stuffing your face with fruit snacks and hot dogs. So proud that you went to school for a bit, tried it, cried a lot, recovered and screamed "mama" in the happiest voice upon my return. Even though you don't go anymore because the benefits do not outweigh the risks I am proud you tried. You were recently diagnosed with asthma and you have adjusted to those inhalers like the baller that you have always been. It blows my mind how one person can go through so much and still be so stoic. You have taught me more in two years than I ever learned the 30 years prior. You have been through more than most will in a lifetime with that journeys end nowhere in sight. We fight through it though. We take it one day at a time. We know how precious you are. How precious each day is and we revel in that. I smother you in kisses and hugs. Rock you to kingdom come. Give you whatever you want because damn if you don't deserve it. You deserve the world Paxie and it is my mission in life to give that to you. It is my mission to get your story out there. To share with others on this journey the gift that it is. In spite of the heartache and fear you and your broken heart are a gift to me, to our family, to this world. Your broken heart holds more love than many, many of the healthy hearts I know. While I silently worry that there may not be a next year every minute of every day, I also relish every moment for what it is worth. I worry about the future, yes, but refuse to allow that to take away from your present. You see none of that and that's how it will always be. I may cry in the next room, but in front of you, you will always see my smile, that same smile I graced you with that mirrors my own. Your big, belly laughing, dancing smile! It lights up my life sweet boy!

So Happy 2nd birthday to the bravest boy I know. My hero, my heart. My wish for you is that there are many, many more to come.

Each and every day you light up my life. Always and forever will I love you ~Mommy

This year you learned:

to crawl
to walk
to say more words than any two year old ever, lord is your vocabulary advanced
to dance and you have some serious moves (we found love by rhianna being your fav)
to give yourself meds through your feeding tube or via your mouth
to beat up your brothers
to love the water whether it be in the pool, at the beach, bath or toilet. yep you think its funny to empty any and all trash into the toilet. we now lock all the bathroom doors in your honor

you can slide down the slide all by yourself

feed yourself

we said bye bye to your bottle and hello sippy cups

you still adore your paci and "nini" (blanket) and that is fine with me, and anyone who says otherwise will hear the wrath of me (i.e. old man in the elevator!)

i just ordered your big boy bed, a full size no less so i can sleep with you

you like to undress yourself and typically only get one arm out

you think its funny to spit water, milk or any liquid really out all over whereever we may be

you are in a size 6 shoe

2T clothes

Size 5 diapers

you rode your first jet ski this past summer (much to your chagrin)

spent your first week at the lake

you made the cover of special needs neapolitan magazine

you went on daddys boat for the first time

and got your first big boy haircut

here's to many, many more firsts....

A little American pride right here!

2011-12-22T20:34:00.000-08:00

Oh "Masey" how I love youuuuu!

~J

Full Up

2011-12-20T19:38:00.000-08:00

Man oh man am I full up right now. Full up of gratitude, heartache, fear and holiday cheer. This time of year is a whirlwind and for whatever reason this year it has been going by exceptionally fast. I canNOT believe Sunday is Christmas. So much to do, so little time, and yet I awoke this morning to a heavy, heavy loss in the heart community and I cried. I cried at how unfair this is for so many people and so close to the holidays. They will never, ever be the same for them again. I ache for them. For their deep seeded loss and I realize that Paxton being diagnosed with asthma last week along with his CHD isn't really such a big freaking deal. Hell he's not on ECMO. He's home. So he takes 12 meds a day, big deal. And yet it is all a big deal, its scary and it's serious and it upset me and then I realize that we are lucky. There are many people out their with healthy kids that look at us and feel bad and apologize when they hear about Pax. Apologize for what exactly, I don't know. It's not something I have or ever will say to someone. There is no need to be "so sorry" for us when others have it so much worse. We have a beautiful, gorgeous boy who has done nothing but teach us the true meaning of life. And I sit here as I have all day holding back tears, I know that these babies are brought here for however long to teach us just that~ how intensely amazing, fragile and beautiful this life is. Is it hard, oh hell yes. Chock full of fear, to the very brim, but I can bet your bottom dollar not a one of us parents would trade it for anything. So while emotions run thick and tears brim my eyes just seeing a friend in the kids school hallway, I wave my hand before my face as if that would dry it all up. It doesn't, those tears are always just at the surface waiting...waiting... for myself and for our fellow heart families and any special needs family. I continue to tell myself we were picked for a reason and I cling to that in saddest, most desperately hard times. So far there are millions of others far more stronger than I ever could be because they have said good bye. And as I have said so many times, the depth of a persons strength is never really known until there is no other choice but to be strong.

I feel like a picture post might be a better decision today than my words. I know, I know... me at a loss for words, doesn't happen often right. Sometimes though I believe pictures can tell a better story than words.

UPDATE: I shut down the computer after writing this earlier this afternoon and took a nap. It is amazing what sleep can do, how it can heal if we allow it. While I am still quiet and introspective, I no longer feel like I will melt at any second. Those families hit so close to home and my heart is heavy for the burden they bear as I write this. As always, I rocked a little longer and "nuggled" a little harder tonight. If these babies teach you nothing else, it's calm in the midst of chaos, love in the midst of hardship, gratefulness in the midst of life.

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In West news we are all kinds of caught up in the hustle and bustle of the holidays. And by hustle and bustle I mean parades, polar express parties, boat parades, santa visits, class parties,

grown up parties (holla!)

Walks downtown caroling and light oohing and ahhing. I was notorious for being a "picture whore" before. Holy heaven do I have hundreds from the last couple of weeks. Oh' but these moments are all so priceless. I want to capture them all. I want to bottle these children up as it is this time of year I realize how all to quickly time is passing.

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Oh hey there grown up little boy with a fohawk! Whatcha doin!!

Parade pics I mentioned in last post. Um... are you kidding me with those EYES!

And these cheeks. I literally suck on them until he squeals in laughter. There will come a day soon that I will be "that mom" when I do it and I will have to stop because I will embarrass him. Ok, so I won't stop but he will beg me to.

A little bit LOUD, but he rallied. Anyone ever told you you have a little brother that looks just like you Austin... It should also be noted that that little brother A-dores his "Aussin".

Aforementioned girlfriend trying to give him a kiss! Kid goes to a parade and leaves with a lady! Way to make Daddy proud Aust!

Couple of the night!

Other couple of the night~sorry honey ; ) pretty sure he may have seen a ghost or an alien or something because he's all kinds of holy sh*$ get me outta here in this pic.

And those pursed lips...OHHHHH that is my favorite face. He does it when he's concentrating. They purse right out and I purse right in.

Mama and her golden boy

Oh hey Bojangles, how did you get in there. That's our dog Boji. He's obsessed with me and it makes my husband crazy!

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Moving on to the Polar Express Parade: local news anchor Lois Thome read the story.

Also:

Dear Austin, we are still unsure where you got those gorgeous, long legs from but I need to tell you right now it's not fair. I want them and would be ever so grateful if you could share this height gene you somehow snagged. K, thanks boo boo.

Two things to note:

1.) It was pajama day at school. I do have day clothes for my children and don't lie you were totally thinking why is that child in pajamas.

2.) Lois Thome was the presenter when I gave the golden apple award to my teacher when I was in high school. As in 14 (or so...) years ago and the lady hasn't aged a single bit. I would like to know her secret and really wish she wouldn't be such a show off about it : ) I kid. I kid. She's actually the sweetest person ever.

One of the very few photos captured of Austin smiling. He really is a happy kid, he just gets so sick of the paparazzi stalking him all the time.

no they did not call each other the night before and plan this. clearly old navy's sale got a lot of people hot and bothered.

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Next up on the West agenda: Paxtons Party

It was beautiful. All of our friends and family came to celebrate him. We had kids running all around the yard, Pax himself trying to keep up. We had presents brought for the children in the cardiac unit where he has spent many a months. We put him to bed and celebrated the night away. I eventually did what I do best and caught a glimpse of the slideshow I made on the tv and it hit me and I made my way to my bedroom and cried. Remember those tears I mentioned above...waiting...always waiting... I cry a lot. And at the most inopportune times. I worked hard on this party mostly just for what it stood for and in the end when all was said and done I had to let it out. My girls rallied around me. They said no apologies were needed even though I kept doing so. The men stared all like WTF when I walked out red eyed and puffy faced. Oh' well. Won't be the first time any of them have seen this girls waterworks. I think all of Naples has seen it at one time or another. It's a hard knock life and tears heal the heart so cry I will.

Here are the boys all pimped out just before the party in their "tree house" even though there is actually no tree involved. GORGEOUSNESS!

Champagne fountain courtesy of my friend Roxanne cause that's how we roll ; 0

A Daddy and his girls

A Mommy and her hero.

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Paxton all like, oh hell no running away from Santa....

Oh wait... you give presents....

Alrighty then... we might be able to work something out...

Kid is no fool.

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Caroling downtown with our class. Brave, brave teachers I tell you...

Poser!

With police escorts thank you very much. We do it big here. Or shall we say safely!

Ok I dunno if y'all are tired of looking at pictures of my kids, but all this has gone on in a matter of weeks, now you know how I feel! Whew has it been a whirlwind. Oh and Austin got that stomach bug going around too. Good lord how much can we pack into one month...

Alright alright I am done.....oh wait I almost forgot...

Now. I am done. If I don't make it on here before the big day, from our family to yours we wish you a Happy Holiday. Enjoy one another. Cherish the oh' so small things and give thanks time and again for all of the blessings bestowed to you.

Lots of Love and Hugs

this is called it's 4 a.m. and i can't think of a title...

2011-12-20T18:15:00.000-08:00

It's 4 am again. Yay for me! Wide eyed and bushy tailed as per usual. I am unsure how I can be awake right now given the "help" my doctor has given me, but I am quickly learning that the mind and heart will win every time. I have melted every other day this week. I am gonna need to get myself together here at some point. Lady at the bank looked at me like I had ten heads when I decided to cry in her line yesterday. I know an enormous part of my crying is lack of sleep. I have said before and I will say it again, no sleep is a true form of torture. I remember those days the first six months of Paxtons life when he was on a heart/oxygen monitor 24 hours a day. Kid couldn't yawn without that thing going off and my feet never hit the floor every.single.time it went off for I flew to that bassinett and he was always fine. I was straight up jacked for six months. Crazy lady walking around in a 5'2" body. No sleep=tortureeeee. So I figured out why I can sleep during the day, but not at night...well let me rephrase that, my friend Beth figured it out. I sleep during the day because I know he is being watched, I do not sleep at night because he isn't being watched. Plain and simple. So I called Cardiology to ask for an apnea monitor for my own peace of mind to which his doctor politely declined saying he did not need that, to which I replied he may not, but I do. She told me we can be seen every two weeks until his surgery to ease my worries. I will tell her in a week that there is no easing my worries. I will show her the bags under my eyes as proof, that may scare her enough to help a mama out.

We went to the Christmas parade last night. Oh was it ever fun. The boys loved it. Paxton ran around like a mad man in the middle of the street (the roads were closed calm yourselves) with all the "big" kids. He ran until he started coughing so hard he was gagging and trying to throw up. I put him in his stroller to try to get him to chill, he screamed his face off, I let him out and he high tailed it back to the big kids, coughing and panting and some kind of purple, but hey he had fun. I am letting him live. It is hard. It hurts in a way I cannot describe in words to see him struggle. But the light in his eyes, the awe on his face the entire parade made it all oh' so worth it. I was enamoured with just how enamoured he was. Mason sat with ears plugged the whole time and Austin started out that way then found his big boy pants and was all racing to get candy and clapping and cheering. Austin. My insanely shy boy. The one that would cry at the mere sound of a siren in the parade. The child who would hide behind me when around people he didn't know. He took his fingers out of his ears and had fun. I cried...again (told you). It made my heart smile to see him comfortable and having fun. It filled me to the brim to see the progress that child has made in a mere 4 months. And the cherry to my sundae.... kid has a girlfriend and kid got his first kiss. At the Christmas parade. I missed the kiss photo op, but here's a hug shot. And don't worry she wasn't some hussy off the street, we like to keep it in the family, so he picked a friend of ours daughter. Or should I say she picked him. That one is gonna rule the roost, just sayin. Given that it's 4 am you will have to wait until next post for those pics to be downloaded off my "real" camera.

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We celebrated our anniversary. We had an amazing night. We toasted to making it through the hardest two years of our lives. We talked about how much the struggle knocked us down, but how we both got back up and better than ever. We popped bottles and we filled our tummies with A-mazing food. We ran into friends and laughed the night away. thank you paula and kyle for letting us crash your date night.

I am kinda out of crap to say. I don't know why...maybe because its oh... FOUR THIRTY in the morning. Did I mention that...ugh! Did I also mention that Saturday is a big, BIG day around here. We are having Paxtons birthday party a little late this year. We decided to throw a Christmas/Paxton party. We are having everyone bring a gift for the children of All Childrens Hospital in lieu of presents for Pax. He doesn't need anything and he is home this Christmas when so many aren't. We will make a trip to the CVICU and give gifts to those that cannot be home this holiday season. I had Thanksgiving in the hospital last year, but Christmas would be extremely hard especially having two other children. We will gather round my boy and celebrate his journey. He has so many people pulling for him and what better time of year to celebrate that. What better time of year to focus not on the materialistic things, but on the joyous ones.

So I am gonna peace out for now. Try to get some shut eye before the world wakes up all refreshed and I'm dragging a*#! I leave you with this....

And in the words of Melissa Gorga, "thank you Jesus."

Love and Hugs,

Its a stream of consciousness kind of day my friends...

2011-12-02T02:49:00.000-08:00

It's 4 am here. I am wide awake. I don't sleep. Like ever. I think I may actually be nocturnal. I can take one hell of a nap, but other than that I lie awake and toss and turn or sneak into my babies room and pull him from his bed. When he is in my arms, I can rest.

I cannot express to anyone the angst that is filling my heart these days. Just yesterday I was at a play date with a good friend and Paxton was running around trying to keep up with his older brothers. He was loving every single minute of it. But he was blue, like CSI blue and he was panting, hard. She looked at me because she will always be utterly honest with me and that I need, and her look said it all. We sat watching him and it hurt us both. She as a mother and my friend and while I hate that look for what it means, I know the love behind it. If I stop and talk beyond the day to days about Pax, I melt. At any given moment no matter where we are you might find me crying. Little things set me off. I take it day to day. I know what looms in our future and it is paralyzing me. I thought the intense love I had for him as a newborn could not get any stronger and I sit here in the wee hours knowing it can and it is. As I watch my gorgeous, perfect son grow and cry for Mommy and tell me loves me and throw his food and decorate our Christmas tree I fall deeper in love. I know that I am not supposed to live in fear, but right now I live in fear every moment of the day and I am not sure why the intensity is so much stronger other than the physical signs remind of how close we are to handing him over and praying for the best. That day will kill me. He understands. He screams for me. I am the one who calms him at any given moment, and yet I will stand there stoic as a rock, for him. He never sees all that I have just written. Only the love. The fear never prevails around him and his smiles shows that.

So while sleeping pills, lavender pillow spray, magnesium, meditation and yoga still don't allow me sleep I keep forging ahead and find that my body seems to be adjusting. Soon I will need botox and eyelid lifts done, but thats beside the point ; ) We/I have no other choice but to cherish every single minute and oh' do I. I stare at him, love on him, "nuggle" him and know that he is the greatest gift I will ever experience and he changes people. This story. This struggle has changed me so very much and I think of who I was before him and who I am now... and it blows my mind. I lost my way there for awhile, drowning in angst and grieving for all that we had been through in two years time at full speed ahead, but I prevailed. We prevailed. He prevailed. That's what we Wests do. We are blessed and no matter how Paxtons story is finished I know we are blessed. Dear friends and prayer warriors, I hope that you will take a moment to "pray for Paxton". Pray that we can hold off on open heart surgery until after flu/rsv season. Pray that he continues to fight off every little thing he catches like the baller that he is. Pray that God has big plans for my little mans future and for my peace. Please pray for my peace. For the knot in my stomach to ease, just a smidge. I have already done the bargaining with him. I just need his peeps to rally around him and envelop him in love and the power of prayer.
Also, you all should know I think I may actually have to cave and ask Santa for a snuggie. As I sit here freezing my heiny off because my husband works in the sun and likes to come home to an igloo I just. cant. get. this. blanket. to work right. It's important when you are writing ya know. I warned you~stream of consciousness.

Let me just tell you that we are in full blown Christmas mode around here. Tree is up, house decorated, 95% of presents ordered and waiting to be wrapped, elf on the shelf is making his rounds and the sound of me continually saying no it's not Christmas just yet, but soon fills the air oh....I don't know 1,457 times a day. They're pumped and it shows. This Saturday we are having breakfast with Santa which has them some kind of confused because he lives in the North Pole and he's making presents and what not and the boys would like to go there (naturally ;) and see Santa and play in the snow and I told them we can't go to the NORTH freaking POLE because he's so busy right now yet he's coming to have breakfast therefore why can't they go back with him on his sled with his reindeer (who will not be attending breakfast) This shit gets tricky I tell you. And that run on sentence I just made. That's exactly how it sounds coming from two little boys mouths who are filled to the brim with excitement trying to understand it all.

They decorated the tree. The loved every minute of it and the bottom half of our tree is stunning ; )

These are the days my friends. Making memories that I know they won't forget and I say that because they forget NOTHING!

Like when they tell me which way to go when we are driving to a particular place. I'm thinking how in the hell do they know where to go when all they do is scream and fight and call each other babies the entire time we are en route somewhere. Must be an internal gps or something.

We saw Santa already. We got caught in rain. We laughed til it hurt.

Well...the grown ups did at least. The hubs was awesome enough to pull us all in the wagon so we could race back to the car faster because we all know how slowly children like to meander along. It's like watching paint dry. Good times.

I had a couple of girls nights in there too. We danced and giggled and it was good for my soul. Sometimes a girl just needs to let loose and laugh til she pees herself (thank you 3 children for that) I have good peeps surrounding me. Peeps who get it. Peeps who tell it like it is. Peeps who will dance on the back porch on a random night and have towel fights in the bathroom like little kids. Ok that's my sister but she's one bad a#* peep too who as young as she is can no sooner see my pain that she's not right beside me ugly crying too.

no that is not her margarita thank you.

Peeps who genuinely love my boys and put up with all the hoopla that goes on in a house with three wild, loud mama loving boys.

Peeps who are real. Who will tell a story unedited because thats life and peeps who will shake their tail feather and who "don't stop believin" while doing so.

Ahh yes for all the angst there is joy and love and goodness. For I have three of the most amazing, smart, gorgeous boys ever and it's almost freaking Christmas or as Mason would say "don't forget Austin its Jesus' birthday too". Good boy Mase. Good boy.

Our Christmas card will knock your socks off. Stay tuned. I will be back after we celebrate our anniversary, after Santa pops into have some eggs with us and to share whatever else might pop up over here in Westsiiiide.

And I almost forgot...yesterday I am in the kitchen making snacks and the door bell rings. I ahem...see through the window that there is a police car outside. My heart stops. Like I had to have been as white as snow when I opened that door. Insert large, scary, armed police officer glaring at me. I put my hand to my chest because he just stares and I say what happened. I immediately thought someone was hurt (thank you SIR for NOT having the decency to at least inform me that it was not emergent). He proceeds to tell me that my children were playing with the phone and called 9-1-1. I literally almost fell to the floor. I hung there like a ragdoll and said you'll have to forgive me for a second I know that this is a big deal too but I thought someone was hurt. You really scared me. Large, scary, armed police officer did not care that little mommy who clearly didn't watch her kids was scared. So I got the phone and ahem... ended the 9-1-1 call that was still in process and apologized. I asked him to please tell the boys what a big no no that was. Austin hid under the table i.e. the culprit and Mason asked to see his gun and said we only call the police if our house is burning down. No Mason you may not see his gun and if the house is burning down get the frig out. The end.

Love and hugs,

Picture Whore...

2011-11-18T06:30:00.000-08:00

Yah, you read that right. Apparently that's what I am, according to my husband anyway. In truth he is right, my I phone currently has 1, 825 pictures on it and that does not include the previous two phones that 1.) fell in the ocean or 2.) the toilet. Clearly phones, water and myself are a bad/expensive mix. Please do not tell me to get an Otter box, I have one already, it resides in my junk drawer, right where it belongs ; ) now, where was I, ahh yes 1, 825 pictures.

So maybe I am a picture whore. I guess I could be worse no... Everyone says I post every. single. moment. of my kids lives on FB and you know what maybe I do. I am proud. They make me laugh. They make me smile. What's so wrong with that anyway. So nah nah na boo boo to all you haters out there. You just wish you were a West boy.
Whew... that said, I am clearly with a 5, 4 and 2 year old unable to post every day or even every week to the extent that I would like, but my pictures, oh my pictures I just have to share, even if I do it just for me to look back on so I am going to try to at the very least keep up with that. Seeing as how everything other than cleaning, eating, preparing for the holidays and breaking up fights between brothers goes to the wayside.

Take ONE:

The boys presh school picture. Have you ever seen a cuter run of the mill picture AND they got my brothers together!

Take TWO:

Our family Halloween picture. Priceless!

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Mason gets a haircut. He looks just like his Papaw now (my dad) and I can't stop smothering those cheeks!!!

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Family movie night. Piled in the living room eating pizza and popcorn. Heaven!

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Have I mentioned how funny Paxton is....

First picture is so I can always find him around the house. Tie that B to his paci and off he goes. Sa-weet!

And here I happened to catch him staring at himself in the slider... Course I would stare at myself if I was that gorgeous too!

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This past weekend we went to an event called Redneck Yacht Club. Mmm hmm... the name says it all! We loaded up in my friend Beths motor home, a baller motor home at that, and went once again chillin on a dirt road. It was cold and AWESOME! Muddy and CA-razy. Beth and I were no doubt the most posh chicks there, but that's not to say we can't let our hair down and have fun, cause that, we did!

40,000 people lined the terrain of that old potato field now turned mud hole. We piled in all willy nilly, parked where we could find a spot, surrounded by trailors, trucks, buggies and tents. We started the bonfire, pumped the tunes and literally chilled on a dirt road. I can now check a lot of things off of my bucket list after this past weekend. I can also tell you how truly awesome a friend Beth is. The two of us were not on our A game heading into the weekend. She had been fighting a cold, I a bad headache. Turns out the cosmetic bag with my medicine fell out of my big bag and was left behind in our car, 2 hours away. Needless to say I woke up Saturday, feeling shady but managing. Within hours I was completely man down from a migarine. Like MAN DOWN! Beth saved me and I mean literally. She unhooked the suburban from the trailor, put her not feeling so good self in and drove 2 hours home to get my medicine and bring it back to me. Within the hour of her return I was up and able to join the land of the living i.e. last picture above. Thank you Beth. I am not sure you know just what you did for me, but man do I OWE you!

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And finally I give you Mason. My insanely congenial boy. SO congenial we have had to have the stranger danger talk on more than one occassion with him. This kid says the darndest things!!!!

This morning he had his finger so far up his nose I am sure he is touching cerebellum and he says "Mommy I feel a screw!"

Me: "That explains a lot Mase..."

Or here when I walked into his classroom and saw just how precise he was on his thanksgiving day dinner wishes... Cracks. Me. Up. Even when I probably shouldn't be laughing!

it should also be noted that rylee is a bit of a show off dontcha think ; ))

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It's a good, good life.

As the holidays approach I become nostalgic, as do we all at this time I suppose. I tend to be a little more than others I think because two years ago on this day, I was here. I knew it was close and I was right. The night before Thanksgiving Paxton came home for the first time. I will never forget that day. I can simply read my blog post and all of the feelings from any given day come rushing back to me. God this journey is so emotional. I sit here crying because as much as I describe it in my writings there are no words for any of it. None. For all of my other heart/special needs mommys still hospitalized and fighting the hard fight, I honor you and give you praise. I pray for your peace.

I pray that I can continue forging ahead without looking at Paxton, hearing him pant, seeing his color and not feel my heart rise into my chest. He is a big boy. He is showing signs of being ready for his next surgery and we just want to get him through cold and flu season, I pray for that too. I pray for strength as he will have his heart cath done in a little over a month to determine when that surgery will be. I pray that autopilot kicks in high gear and we will have this next surgery behind us. I pray for the day that I sit here blogging and he is post fontan running around like a crazy man. While most days I am at peace with all of this, lately it's been a struggle. It's scary and gut wrenching to see him work so hard to walk across the backyard. Dave and I just look at each other and give that knowing glance and he winks to let me know its OK.

It. Is. What. It. Is. so in the meantime I soak up every minute I can. I sneak him into bed with me when the hubs isn't looking. I sleep on the couch in his room. I smother him in kisses. I memorize every square inch of him. I record that belly laugh in my head.

I give thanks to those in his life that truly love him. That love me, in all my ugly cry gloriousness, for me. That pick me up when I am crying in front of a bon fire. That tell me it's ok to melt somtimes. That bring me a towel and socks when he looks cold. That get him a drink just because they know he needs one. That love him without fail and fear. Without any other intentions than to know him and his journey. It is a gift we are thankful for. And even when I can't stop the hot tears, I am thankful for those too because I would cry until kingdom come if it means he is here with me.

I think I am done now. I think it's time to hang my head out the window, dry these b*%ches up and get ready to celebrate the season. Dont we Wests have a lot to celebrate!

oh yes we do!

Hugs,

Holy Halloween Batman (pun intended...)

2011-10-27T13:54:00.000-07:00

Oh hey there...

Bet ya'll forgot about me... I don't blame you. Not sure why I have refused to sit down and write lately. My heart has been kind of full, heavy, overflowing if you will. It happens I suppose, but it doesn't allow for good writing. No one wants to read the hard stuff. The injured and unable to run Chicago marathon which was my goal for like ever now that was probably a blessing in disguise because I am not sure Chicago is a good place to step foot, now or maybe ever stuff. The not sleeping, constant worry, gearing up for Fontan surgery stuff. The memory lane, song sends you over the edge, just don't understand stuff. Yah' that's the stuff you shove down, push away, avoid at all costs because it hurts stuff. So I grab my rather large box of band aids and cover it all up with quiet birthdays at home, wild birthdays out with friends, spooning with my babies, afternoons at the zoo, tractor riding, pumpkin patching, nemo and batman pimpin' par-tays! The neosporin for the heart is seeing my babies happy. Good salve right there...their love is strong enough.

This below heals, and in a lot of ways is the only smidge of understanding in all that I doubt... It's our kids. For our kids.

Quiet parties at home. Sunset in the background. Gorgeous baby who has overcome mountains. Who lives to see another year, oh hell yah! Half a heart whaaaa?

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Then there's some cheers to the freak~in weekend~ and I'll drink to that....

Happy Birthday to me from my peeps....

And we start out like so:

And up like this....

Yup that's hot stuff right there and I post because this is sooo us.

Also, there should be zero doubt where my son got his ginormous mouth. The proof is in the puddin eh'

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Ahem...
In other news:

Did I mention we are gearing up for Halloween around here. Holy festivities! We started with the pumpkin patch...

pax was all like um mom you forgot meeee

and i was all like full blown standing on my head trying to get all three kids to smile, you see where that got me...

Next up:

The Philharmonic for some face painting, trick or treating fun.

Costume contest... Nemo won. Duh!

Cause really who can beat that gorgeous angel face...just sayin ; )

Add on a little Fall Festival at the boys school:

superrr proud of my cautious boy for riding that horse like he owned it

not sure why I am all what up yo' in this pic...

And we top off this sundae with class party after class party:

big brother lending some support on the playground

as per usual, he rallies

Batmans turn:

Austins will follow on Monday morning after which I will have returned at 1 am from South Carolina. Godson is getting baptized this weekend so I will be leavin on a jet plane tomorrow. Holla!

I would say that's probably enough Halloween. Until Monday. Meeting adjourned.

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That right there is my Daddy. Oh yah! He SO has it like that, ranked top 20 in the...wait for it... nation!
SO stinkin proud and for a man that raised his daughter as a single dad, survived a heart attack at 39, was told he would never run again, but so still does and gets up at 4 am 6 days a week to train his team, I would say he most definitely deserves this honor! Love you "Morester" Dad!

best smile everrr!

And when we aren't winning costume contests and partyin like rockstars, we lay low and snuggle up by the light of the moon for story time. We search for the stars with our "noculars". We ride tractors and wear rain boots to the grocery store.

and yes he actually drives the tractor. alone. at 2. cause we are country bumpkins like that.

Time together. Listening to them squabble, tattle, belly laugh, console and play with each other is truly what makes me whole. When my mind wanders off I go to my phone and play a video of them. Or wander across the house and sneak in for an extra kiss. There isn't a song in the world that could truly portray me. The feelings. The hardship. The fight. The loss. The love. It is all so intertwined there is no unraveling it, ever. So I keep applying that salve when I need it knowing that these are the days and that we are all under the same stars. For all I don't understand there is so much that I do and I go to what I do know, trust in that and trust in this journey.

thank you morgan for this reminder....love you

Happy Halloween my peeps!

I am peacing out to South Carolina. Bring on the cold!

Hugs,
J

Thank you I'm gonna miss you...

The Silver Freaking Lining Peeps

2011-10-07T12:51:00.000-07:00

My birthday...?

Yesss, about that. It was heavenly. I want to be there again right now. I am pretty sure that's how the rich and famous do it and I am pretty sure the hubs had a full blown heart attack when he saw the bill. He went all out cause he's amazing like that. It looked a little like this:

And this:

Heavenly right...It was over all to soon. The cool thing about things like that being over quickly is I always get to come home to this:

It's like a party every time we return from anywhere. They make me feel like the coolest, most needed person in the world and that in and of itself feels heavenly.

horrible picture, sheer joy

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I have been a little emotional this week (shocking, I know) and I have come to the realization that I am just not ready for my baby to not be a baby anymore. Paxton David will be turning two on Saturday. My life two years ago today was that of sheer terror. I was 9 months pregnant and scared to death that he would die. I was packing my life up for what would be two months to stay with him away from my family. I had no idea of the journey that lie ahead for me. I have said a million times and I will say it again, I cannot wrap my head around it all. It feels like yesterday and it feels like an eternity ago. It's been a whirlwind of a couple years and I am just now finally starting to fall back into place. The fog has lifted and I am at peace with it all. At peace with the fact that this journey will never be over, at peace that we will always live the "hospital life", at peace with special needs. So many people tell me how strong I am and I always think...what choice do I have. What choice did I have. There was no option to not be. He had no choice, but to sit in that isolette for two damn months and go through more pokes, pricks, surgeries and tests than anyone should ever have to in a lifetime. I got that baby to nurse though which is almost unheard of. I got him home and can remember being so terrified at having to do it alone without nurses. He was SO fragile prior to his second open heart. He couldn't cry. He was on a monitor 24 hours a day. I didn't sleep for six months straight because of that thing. The stress level for the first six months of his life was absolutely insane which would be why I was diagnosed with PTSD. Holy hell!

Which leads me to my all time favorite quote:

you never know how strong you are until being strong is the only choice you have.

There I go again with diarrhea of the mouth. Guess I needed to vent. I am spending so much of this week reliving it all. Why do women have to remember everythingggg?

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Moving on....

Paxton started school.

Did y'all catch that? I cut the cord...(a little) Little man has been begging and by begging I mean temper tantrum, screaming, kicking, throwdowns every time we drop or pick the boys up from school. I carry him out sideways on my hip screaming at the top of his lungs like a little girl every. single. day. So I put him on a wait list at the boys new school, which by the way should show you just how much I adore this new school. Well a spot became available a little sooner than I anticipated and we took it. He goes two days a week. Yesterday was his first day and let me tell you how much the kid loved it. I walked him into class and he went right to it. I cried like a little baby leaving my baby and had to be escorted out by my Beth who continues clear the path for me. I called to check on him and I was some kind of cranky all day, but in the end upon picking him up I realized how happy he was which made me happy. He wants to be a big kid. He wants to be like his brothers. He wants to be allowed to live his life and no matter how hard it is for me, I will let him do that. He deserves at the very least, that. As for his teacher...well there couldn't be a better fit if I hand picked her myself. She's that good. I was sooo scared that his teacher would be to afraid to take him on with his special needs, but she accepted him with open arms. There was definitely a higher power in us finding this school and these teachers who are perfect, and I mean perfect, matches for my boys. Austin, my golden boy Austin has flourished in a way I didn't know was possible in a mere month there. Every day I expect a report like I was getting at his old school about how he couldn't focus, pay attention or sit still and every day I get a wave of the hand, a shrug of the shoulders and "puh he was great!" and every day I am in awe of the personality that has emerged from this once ultra shy, reserved boy. Thank you God for this most priceless gift.

*********************************

It's cooling off around here. Finallyyyy. The humidity has lifted, the sweltering heat has passed and I no longer drip sweat just loading the boys into their seats. I want to sleep in the grass and get drunk on the fresh air. No joke. Or if I could be here~ (right now getting drunk on fresh air, that'd be pretty cool too, but since that won't be happening, a screen saver it is ; )

Seriously though, when you live in Florida. South Florida no less, it's like winning the lottery once it finally starts to cool off and you can actually enjoy being outside. Halloween is right around the corner and I have two little boys who are trying ever so hard to wait patiently for it and every day their desired costume changes. So far we have a fireman, a superhero, batman, power ranger, a bat and the latest,

"a monster so I can scare everyone". They take our light up ghost into their room, turn the lights off, cover themselves with their blankets and "woo wooo" noises can be heard down the street. Time and again I wonder what they would do without each other. Even Mason, the middle child who tends to beat up on Paxton (who takes no crap by the way) loves him and told his teacher yesterday that he couldn't be in her class anymore because he had to go be with his baby brother. Priceless stuff right there.

I am going to sign off for today. Paxtons birthday letter will follow shortly. That will be a toughie for sure, but as is this journey, in the end it's worth the struggle because there is this:

Learn from him peeps. This boy is the epitome of happy. Every day he teaches me to find the silver freaking lining!

Love and hugs~

PS I used to do a life with boys post quite often prior to Pax. I think I will get back on that because these boys say the darndest things. Will make you pee yourself...

Austin: " Mason why do you toot everyday?" And good lord does he.

Mason: " why are you old?" to the cleaning lady. Oh dear...

Mason: " is that big girl going to eat us?" while getting breakfast one morning. Gahhh!

Mason (again) : "can you take me to get some Starbucks?" yah ok...

Austin: "we won't do it again!" LIAR ; )

Mason: "DAMAGED!" meaning dammit. Ah, happens to the best of us.

Mason: "Mommy I told you three times to get me some daddy juice!" You better check yourself son.

Yep~ Mason is my wild child if you couldn't tell ; ) Makes me scream and laugh all at the same time.

check out my hat 'yo'

photo courtesy of nanny max. she may sue if i don't give her the credit for this. happy now max?

Yo shortie it's my birthday....

2011-09-30T14:19:00.000-07:00

Checking in to check out. It's my birthday weekend~ the big 3 to the 2. Wow! Time flies eh'. 32 years and many lifetimes of wisdom....
Cheers friends!
I'm going to party like it's my birthday.. Ok not really I'll probably catch up on Greys Anatomy I just happem to like that song. Old school right there :)0

I'll check in with y'all on the flip side,
Have a fab weekend~ we sure plan to.

Hugs~ j

Austins 5th Birthday!

2011-09-23T14:35:00.000-07:00

Dearest Austi Bear~

I look at you and melt. Your sweet, angelic face had me from hello. Your coy smile wins me over every time. I absolutely adore the little gap in your bottom teeth and your dimple, oh those "dimpies" are the cherry to my sundae. I canNOT believe you are 5! I remember the day you were born like it happened minutes ago. You have been amazing from the moment we met you and for all the struggles you have had to conquer you rally through like the "super hero" you really are. You fought physical therapy tooth and nail and today we couldn't hold you back if we tried. You have opened yourself up little by little and in a mere 3 months we have seen enormous strides in your personality. You are obsessed with me today just as deeply as you were the day you were born. You are my golden boy and Daddy says its time to "cut the cord". I say that cord can stay as long as you like. I love when you climb into my bed and snuggle up against me. If I could bottle your smell I would. I love your belly laugh like I love french fries and if I could listen to your sweet, precious little voice all day every day I would. I am so stinking proud of you for taking the last two years and fighting them like hell, but also fighting through them. You were lost when Mommy was gone~ heartbroken and sad, but you pushed through when I was worried you were forever hurt. My resilient, strong boy has come back stronger than ever and my pride continually flows as I listen to you spell your name or watch you love on your baby brother. Some days I think of how deeply I love you and your brothers and it scares me. I will never be who I was before you. I can never go back to that freedom, not that I would want to, but know that so long as there is air in my lungs I will love you, be here for you, fight for you and show you the way. There will never be a day that shall you need me, I won't be there. You will never call and not reach me. You will never cry out and not hear me coming. I am your Mommy now and forever and that is the greatest gift in the entire world. "I like you today Austin." I like you every day for the rest of my life and I am so glad "you like me" too (insert his hands on my face here as he says it) for as a wise Aunt of yours once said, like almost means more than love, because there are people I love that I don't necessarily like today, but "like" that's big stuff right there. Happy, happy birthday gorgeous, gorgeous boy!

What you like today:

Batman
Trains
Jack Bode
Karate
Swimming
Stupid Sponge Bob (gahh!)
Sleepovers with Mom
All Ocean Creatures
Noodles, noodles and more noodles
Strawberries
"Daddy juice"
Boating/Beaches/Lakes

You think you are "almost a grown up" now that you are 5. You boss Mason around like it's your job. Are as kind as can be to Paxton. Will go to the ends of the Earth for Mommy. Love to play ball with Daddy. Are afraid of monsters to which we bought magic monster lights to keep them all away. You are now playing pretend play with your toys and making up stories (love to eavesdrop on that) you go to First Pres. Your teacher is Miss Dunwiddie. Your class friend is Cyrus. You are door man on the playground and open the door for everyone. You say please and thank you all the time. You think burping is funny. You think laughing is funny just because. You no longer think when I laugh that I am laughing at you (thank god). You have grown up tremendously over the Summer and as much as I want to keep you little I adore watching you grow up.

To forever baby boy!

Masons 4th Birthday Letter

2011-09-23T14:32:00.000-07:00

Dear Mason~

You are my full speed ahead boy. You came into this world in a just a mere few hours and haven't stopped since. My little chia pet full of spikey black hair, squishy, pissed off face. I will never forget when they announced you were a boy. We waited 9 months to find out. Exhilarating.

You are so much person rolled into that four year old little body of yours. Apparently you look just like me, but act like your Daddy. Mr Congeniality, sensitive yet social as can be. Everyone is your friend and if they aren't they will be within minutes of meeting you once you introduce yourself. We are working on the stranger danger.

You are fearless ( unless there is thunder involved) and wild. You adore Austin more than anything, are a Mamas boy, non stop chatty Kathy, Doogie Howser smart yet will stop and smell the roses for cuddle time with Mom. You're not such a big fan of Paxton, but I attribute that to middle child syndrome. You love "to hold me". When I go in to check on you just before I go to bed, I will cover you up, kiss you and tell you I love you and you will wake from a deep sleep to mumble "i love you tooo..." and I melt. I melt looking at your honey eyes and chubby cheeks. You laugh with everything you have and those little baby teeth create the best smile ever! Just like I told Austin this year... there is no measure to the depths of my love for you. You boys are my entire world and I will always make sure that you know that. Every year these letters to you change because every year you change. You grow and learn and are turning into these amazing, intelligent, kind boys. You make me proud. You, Austin and Paxton are my proudest moments in life. I love you "Mae Mae, Moo Moo, Maci", mean it!

What you like today:

Monster trucks! "mote"/remote ones preferably

playing outside

riding tractors

playing with your friends

sweets~good lord do you have a sweet tooth

you love all sea animals

boating

"daddy juice"

mommy to "hold you"

you will try anything once

you are afraid of thunder

yet love playing in the rain

you think its funny to burp

you think you are the boss

you love to lay in "mommy's bed"

No! David is your favorite book

Every year I never know how to end these. I don't like endings... so I will just say until next year. We have so much to look forward to, so much fun to be had, so many memories to make. Mason Wayne, my wild child, forever and ever! Happy Birthday to the happiest boy!

Whah...Whah...Whahhhh...

2011-09-20T12:41:00.000-07:00

Here is where I tell you that I have been up to my eyeballs in life. In getting back to the basics and where I apologize for not at least letting you know sooner that we are home and Paxton is well. First and foremost to me is being a Mommy and once I stepped foot back on 239 territory everything else fell to the wayside. I missed the boys first day of their new school so I had to have a redo of that day. I had a stack of bills worth hundreds of thousands to sort through ( naturally most of them were medical) I had to go though all of the boys paperwork and help Paxton with pain management and eating. All this after zero to no sleep for seven days. I tell ya folks I just dont know how I ~~partied~~ studied like a rock star in college. Thinking back to those days now I am quite impressed with myself.
Ahem...on to more important things like brotherly reunions, birthday parties and being surrounded by the ones who love us most, when needed most.

<3 you Li! Thank you for picking me up...

Nanny Max. As always, girlfriend keeps it together at the Wests in my absence.

Oh' sister! "Til death do us part B!"

Grammy Cindy, Aunt Niki and my Godson Jack came all the way from South Carolina to join us. Can you say heart...full...of...happiness!

***************

Paxton had his g tube placed on September 9th and we were released on September 11th.

He did amazing. He woke up and while pretty painful, was amazingly affectionate and playful. I got to watch Nemo that week approximately 972 times, the bright side of that is I got to hear Dori remind me 972 times to "just keep swimming" when I found myself wanting to melt. I belieive one of my facebook posts went something like this:

It's official! We are here until tomorrow to monitor for swelling. It's also official that my leg hair is approximately 4 inches long. I am now stylin dreads and the bags under my eyes are nearly touching my boobs at this point. Hotness all rolled into one right here. Tomorrow is gonna be awesomeee!

And it was.

**************

We are home now. Paxton while sensitive is no longer in pain. He is eating for the most part on his own again. The tube however, allows me to help him when he gets to tired to eat. It will prevent him from getting dehydrated therefore landing us back in the hospital. I am grateful for the safety net that is the gastrostomy tube. I am also shouting from the rooftops how happy I am that Paxton leaves his "boo boo" alone. I had visions of him yanking that bastard right out of his stomach. He looks at it and says "ewwwwww isgusting" every time he sees it (and yes I spelled it the way he says it), but it's like he knows its there to help him. Some pictures of the week long journey below. All different days, same clothes as indicated by facebook post above. Hospital life is definetly not paparazzi worthy unless of course you are Paxton freaking West!!!

apple doesn't fall far....

So I can't reach the shelves in my kitchen, but 5'2" is the best gift in the world right here!

***********************************

I had an official redo of the boys first day at their new school. To which they happen to L.O.V.E. and I am T.H.R.I.L.L.E.D with myself. The boys teachers are A-mazing and in a mere two weeks I can see big changes in Austin already. This hurdle I have been debating jumping for some time now, was a success.

Their first day at their new school

Re-do with Mommy (and Masons girlfriend Karly)

*********

Fast forward 1 week:

I got home just in time to launch myself into fifth gear prepping for the boys birthday party in a mere 5 days. You know we do birthdays big here in the West house, so I had a lot to do. Not a single thing was done, for I had no idea we would be hospitalized for so long. I give thanks though that we were out in time to prep and carry on with our pirate plans.

We had an epic celebration for two boys that continually step aside for their baby brother time and again and do so with brave hearts. I know it isn't easy when we disappear for days, sometimes even weeks at a time from their lives only to poof return back home. My heart was bursting to throw them this party. To give them their day.

They asked and we brought. It was perfection. Surrounded by family and friends. Piercing screams of little boys tearing through the joint with blow up swords. Oh it was heavenly. For I will trade those screams any day for those of the monotonous beep...beep....BEEP's of ICU monitors. Only pictures at this point could portray the enthusiasm that filled that room.

Arrr Mateys....

NEED!

Adie working that camera

My Godson Jack

No inkling who this lady is, but God bless her for taking on these boys

He thought he was so cool sporting his pirate patch!

Spiderman i.e. Birthday Boy Mason

Best Friends Foreverrrr!

All he wants is to be one of the boys... and he so is.

Whatever that wish is Austin and Mason...I will do my best to make it come true...

*************

For all the times we wind up hospitalized, I leave that place a wiser, deeper, more grateful person. This is not to say that I haven't been an exhausted grump, because that I have been. No sleep is certainly a form of torture and at the end of the day, it quite often catches up with me. My husband is the brunt of it and yet he still loves me in spite of it. He praises me over and over. He gets me diet cokes even if its 11 o'clock at night. I fish like a little girl to be reassured that I am doing this ok, that I did it ok and he reminds me that in the depths of my exhaustion I continue to get it right. When the option isn't there to fall, you don't This I have learned.

My list continues to grow longer and longer. For every thing I mark off three more are added, but I take a deep breath, remind myself what matters, what can wait and what tomorrow will bring.
Shortly after we got back Dave and I went on date night, down to this little outside bar (a bar...shocking I know ;) on the water. Right across the way is this little breakfast cafe'. I remember looking at it and looking at him, I said you don't remember this, but nearly 3 years ago I sat at that table with my mom and sister just after we lost Tadem. It was the first time I had been out in public since I had surgery to remove him. I robotically ate, I will never forget the fog that encompassed me. I hated that life went on around me when I was so deeply broken. I told my husband this story and how I sat today looking at that cafe in complete and utter awe of how far I had come. I did not think I would be ok and I was. I am. We are.
Tadem prepared me for Paxton. Tadem is Austin, Mason and Paxtons guardian angel. They say for every person that passes new life is born, this I believe. There is a lesson behind everything. While it may take years to find, if you open yourself up to its possibility you will find it.

I find it here:

Sleepover with Mommy

and here:

Happy Birthday Boys. I am pretty sure you already know at 4 and 5 the depths to which I love and adore you. Your birthday letters for your memory box will follow shortly behind this.

As I habitually do, I wonder where we will be next year at this time....

For those who continue to drop in and peek at our corner of the world in spite of my tardiness in writing, I thank you. I will never trade this for them. Now that we are home and settling back in, Tuesdays will be my writing day and you will hear from us a lot more. Paxton has a lot to teach us all. He is just shy of his second birthday as well. Lots of celebrating around these parts so stick around.

Remember this does not end here....

Love and hugs,

j

2011-09-05T20:55:00.000-07:00

No sooner do I write in my last post that something is up with Paxton that I now write to you from the CVICU. Story of our lives. I am heartbroken and sad tonight. Is it so much to ask that this kid catches a break... Is it so hard to allow me to be home to take my kids to their first day at their new school tomorrow.... Speaking of hearts mine feels so damn torn all the time. I feel so much guilt for Pax taking precedence over everything else. He just does. He is fragile and the west world stops when he gets sick and two little boys are left in the wake. It pisses me off and makes me cry all at the same damn time. I need sleep but we all know I don't sleep without medicinal help because my mind never, ever shuts down and I can't take anything here so I just lay here and silently cry. My head is pounding. I want my bed. I want 3 little boys snuggled up beside me in it. This damn heaviness needs to go away. It such a heavy burden to bear. What to do. Surgery or not. Risk it or not. Somebody decide for me so I won't sit here and wonder if I will make the wrong decision. My only solace right now is having a bad ass nanny that is part of our family who will ensure my boys will be ok and a dear friend rearranging her own day to stand in for me and make sure they transition ok. That same friend who is awake with in her own bed worried about me sending me reassuring messages as I type this. And Aunt Lisa who forced me to nap today in the midst of my first meltdown.
I know the tears will cease. I know the boys will be ok. I lmow tomorrow brings a new day. A day in which hopefully Paxton will eat and drink so we can go home.

...you never know how strong you are until being strong is the only choice you have....

Recipe For Life...

2011-09-03T14:03:00.000-07:00

So many things on my mind, so little time. We have big changes taking place around here. All for the better. Mommy has been hard at work trying to get some things figured out and next week they will take place.

Today unbeknownst to me, Paxton became a star. Not that he already wasn't, but now it's in print. Oh' yah, his magazine debut hit the shelves today! Proud beyond measure. I didn't think this cup could runneth over any more than it already does, but I suppose there is always a little more room. If this helps one family, then Pax has done what he was put here to do. Oh' how I look at that and can't believe he is sick. He looks amazing and gorgeous and perfectly well...healthy.

Speaking of Pax, we had a little emergency room trip on Sunday. We have given new meaning to the name wild, wild wests! Boys are obsessed with their ride on tractors and we go on them just about every. single. day. as I wrote in my last post. Well, this time around Mason, bless his wild heart, was full speed ahead showing off when he knocked Paxton down and ran him over with that 50 pound tractor (plus two brothers on it) with all its weight right across the back of his chest. You know, that chest that's been cut open twice. That chest that encases half a heart. Gahhhh! Talk about freaking your freak!
It happened so fast neither Dave nor I could move. We just stood their like raging idiots frozen in our tracks. We couldn't believe our eyes. Good to know we have good reaction time....or not.
I picked him up, ran him inside and called cardiology. They said he was probably fine, but that it was a lot of weight on him so to take him in. We did. He was fine, thank you God, and it turned out to be the fastest ER trip we have ever had. It was kind of a thrill to go in and be released in an hour, we never get to do that, so we pranced out of there all badass, singing "peace out NCH!" in our heads. Tough doesn't even begin to describe that boy!

my favorite tongue of concentration, so very austin of him.

UPDATE (saturday 9/3) :

The above portion of this post was started the other night. I have not been able to come back until today. It has been a "uber" emotional week. I don't know why, I only know that Paxton consumes my mind. I have a a very hard time differentiating between fear and mother's intuition. The two make out all to much and I can't see one or the other. I laid in bed a couple days ago and just let er all hang out. He's growing, he's now a star (sort of ;) his heart is working ultra hard, he pants~hard, he sits down mid activity, perhaps in the aisle of Michaels craft store, because he can walk no more. I pick him up and hug to me. Today in spite of an amazing morning, he is vomiting. I sense something is up, but cannot name it and not having a name to something kills me, especially with him. He has been attached to me, he wants Mommy when something is not right, if he's sick, if he's hurt....

And I realize this will never go away. So I cry when I need to, for hours sometimes, prepare for the worst and hope/pray/beg for the best. So far so good right.

And now that I have had diarrhea of the heart, lets get on to happier things like my boo being a star! Oh yah. I may or may not have his cover already framed in every room of the house. There is a pride in him that outweighs anything. Like this morning when he ran his first 100 meter kiddie dash.

that's my daddy in the navy shirt cheering all of the kids on

I wish with all that I had that I could do this for him, fix this for him, take this on for him, but all of this makes Pax who he is so how could I change it... At least he had apparently been bitten by the running bug. He knows this is how Mommy channels it all so, he thought he would give it a shot too.
Oh pavement and keyboard....how you are my solace in this life.

this is where dave and i got married 4 years ago. i looked at it today and was in awe of the journey our lives have taken...

****************************

The older two boys will be starting a new school on Tuesday. That is the change I have been working hard on that I mentioned above. It's a smaller school with smaller class sizes and for my boys that is of utmost importance to us. They are extremely excited to start and I am thrilled to see just how much they flourish in their new environment. So we will have a redo of first day of school pics coming up after the holiday weekend. Paxton gave the ok on the school too. We took Daddy in for a tour and he was in heaven. I even ahem....mentioned a half day slot for him day because he wants ever so badly to attend big boy school. The other two were already in two days a week for socialization, but I haven't been able to let go of Pax just yet. Much to my relief they did not have a spot. I feel I tried for Pax and it worked out how it should. Just as it worked out that there happened to be two very needed spots at this new school at the exact time we looked. There was a higher power putting all of these pieces together for us. HE has our back and I am ever so grateful.

Oh and I have been told to remind you all that we have a countdown til party day around here. Not sure when I will EVER learn to not let the boys know about things to early, because all I hear everyday all day is "Mommy, is it party day yet?" We do birthdays big and I thrive off the build up and excitement for them.

********************

So while some days I have to step away an d some days we/I may falter, seeing this smile.....

.... always allows me to see another day. To submerge myself in moments of bath time with Pax or dinner talks with Mason.

These are the moments right here. I cherish each and every one of them for all to fast they will be a fleeting memory. I have so many of those, children and otherwise. My head and my heart are full of so many moments and I take each one "tuck them away and go to them when I have nothing else". Sometimes daily. A lot when I am running in the wee hours of the morning. It's like an old movie that just keeps playing over and over. A reel that continually streams happiness, heartache, lessons and love... And that is the recipe of life.

Goodnight moon....

Love and hugs,
J

ps--That night in the everglades I mentioned in the last post.... awesomeness! My West Virginian butt ate. that. up.

Paparazzi...

2011-08-26T11:24:00.000-07:00

I sorta feel like Kim Kardashian lately. It's been so many photo ops and so little time. I kid, I kid. Paxtons photo shoot that I mentioned in my last post went on without a hitch. Boyfriend posed like it was his job and the photographer ate. him. up. It has been sent to print, yes print, and will be available in a week. I will be sure to link up to it. I was glowing with pride as Pax smiled and giggled. I sat on the beach at sunset watching my boy, my hero. He looks whole and healthy and it was a little hard to wrap my brain around his journey. I got quiet, introspective. I needed a good cry I suppose. Not sure why that evening struck me the way that it did, but if I have learned anything it's that the oddest moments are when you falter and the ones you are sure you just can't handle, you just do. I rocked him that night as I have every other night, but this time I was drawn back to the days that I sat in the rocking chair, him in my belly, wondering if he would live. It is amazing how far we have come. I suppose I will always be in awe of that. If you told someone this journey was going to happen to them. If you laid it out on paper, they would shake their head saying no over and over thinking there is no way they could do it. While I hate HLHS defines our lives now, I am also grateful for it. It has changed us. In some bad ways, but mostly good. It is always a topic of discussion. His health is always forefront. How is he doing, when is his next surgery are always the first questions posed to me, and that's ok. HLHS may define us now, but if that means we have Paxton here then define us it shall!!

(about this pic....what you didn't see was me using paxtons wind up truck to try and get his attention and setting it in the photographers ahem...hair and watching it get completely wrapped around as the wheels spun out of control...erh, oops! only me ; )

Today we had another family photo shoot. We are way overdue for family photos and the boys are at just that age to make it fun. They did amazing. I only have like 3 I Phone shots, nothing like the amazing ones Terrilyn takes. In fact, she captures the most amazing pictures and I pretty much have to take out a second mortgage to pay for because I want ALL of them! She has been taking our photos since Austin was 6 days old. That's 5 years now. Our house is full of her photography and she has been with us through 2 healthy births, a miscarriage, and Paxtons journey She even generously offered to come take photos of him in St. Pete right after he was born, to have should something happen to him. I looked at her this morning and wondered what she was thinking seeing 5 years worth of babies now children standing before her. The two of us combined can probably agree that it has been one hell of a couple years for each of us, but we also agreed today walking down the boardwalk together that the hell only reminds of the beauty and gloriousness of the present. xoxo terrilyn, cannot wait to see your magic again.

(again note how big my boys are. they are almost to my shoulders. they will tower over my 5' 2" self in no time)

Pure awesomeness right there eh!

*****************************
Aside from all the fame, the boys have begun school again and l.o.v.e. it! It is hard to believe I will have a kindergardener next year {sniff...sniff}
I just don't think they come any more gorgeous than this:

They love each other with a depth I am not sure I will ever understand. It melts me.

And while they are in school, Paxton and I hang out and go to story time where I am the only Mom in Abercrombie and Fitch clothes instead of J. Crew or Ann Taylor. I get self consious. I wear jean shorts, not knickers. I wear skinny jeans instead of sundresses. It's me and I just can't pimp the "Mommy clothes" yet. Don't get me wrong, J. Crew resides in my closet (zero Ann Taylor : ) but it certainly had me thinking that morning....should I change how I dress... And I decided no, that's not me and me is fine just the way she is. Plus, Pax thinks I am pretty bad ass just the way I am and isn't that all that matters...

***********************
And after school we go chillin on a dirt road, laid back swervin like we're George Jones... ok not really, but we do ride tractors on our suburb of a road ; )

In any case my boys love it and holy hell if they don't take after their Daddy! They'll be taking over the company in no time!

*********************

Also, you should know we have the next Michael Phelps on our hands...

And while I am certainly no swimmer, I do still love me some running. Up and at em with Dads team at 5 am. Which means that alarm rings all to early at 4:15, but it's so worth it to have it over with while it's still cool enough to actually breathe and it never hurts to have the best Coach in Lee county also be your Dad, just sayin....

First person I always get to after running... oh he lights me up. That smile, it's all him.

And a good run always leads to a good night out with my peeps...

But wherever I am, whatever I am doing, I always come home to them....

And there is truly nothing more amazing in the world. Beyond measure I am blessed. Beyond measure I am grateful. Life gives me challenges far beyond what I think my capablilites are, but I do not give up, give in or lose hope. I have 1, 2, 3 beautiful little souls that remind me every single day that the fight is always worth fighting and it is in the most insignificant moments that life resides. The riding tractor, throwing balls in the house, snuggled in bed watching Bubble Guppies, dumping all the soap out in the bath to make copious amounts of bubbles moments.

Lastly for today, we have not one, not two, not three, but FOUR birthdays in our near future. Oh' yah September and October are big months around here and ya'll know we do birthdays in a big way. Austin turns....FIVE! Mason, four. Paxton TWO and last but not least I will turn ahem....thirty freaking two. When did this happen? Slow down life! Get ready to put your party pants on folks because we are battening down the hatches, prepping and planning. Can't wait to share.
Until then, I will be back to share the moments that aren't so planned,
*The little moments that make up the BIG picture.*

Love and Hugs,
J

ps~ tonight I am going um' four wheeling in the Everglades with good friends. This girl isn't afraid to get down and dirty. I mean I have never done it before, but I just have a feeling it's going to be to much fun. Wife beater and skinny jeans girl will fit right in! Booya!

2011-08-11T20:09:00.000-07:00

And so.... I just got a phone call asking if we would like to have our hero of a boy be on the cover of our local special needs magazine. I was like a little girl on Christmas morning trying to contain her excitement. I wanted to be like "omg omg, yessss, eeeeee!" to the lady, but rather simply said "we would be honored, thank you so much." You know cause I am all kinds of composed like that ; )

I don't know why this means so much to me. I guess because my entire mission in life is to raise amazing children and help spread Paxtons story so he can help people going through the same thing. What I would have given to have some inkling of what I was headed into. When I think back to those months in the hospital now, it all seems like a foggy dream. It rips my heart out to think about it and makes me want to stand up scream "Hollaaa!" all at the same time. I know there is worse out there... I do, but seeing your four day old newborn with his chest cut open, medically paralyzed is about as traumatizing as it gets. Yet, I had no choice but to do it. There was no option but to get up and face every single day head on for my son. So when I look back I do shout a little "Hollaaa!" to both Pax and myself for making it through the single hardest time of our lives.

Oh... but the gifts it also offers. The relishing every moment gift. The grateful to be here for one more day gifts. The ability to find the mundane things, simply amazing. The ability to learn just how bada*# you can be when you have to be.

Don't get me wrong, this journey has been hell on wheels for our son, for our family and for my husband and I, but we pushed through it. We hit rock bottom, picked ourselves up and moved forward.
So, yes my boo bear being on the cover of a magazine is well...epic to me. I am proud I sent that picture in and even more proud that his story struck the hearts of the publisher. Of course, we can't leave out the fact that Paxton is insanely gorgeous and will rock his ahem... wait for it....... photo shoot next week.

It will not end here. I promise you all that.

Oh happy day!

*********************

I have been a bit of a world traveler this Summer. Ok truth is I have been to South Carolina and around Florida, not so much world per say, but enough to do a girl some good. As always SC brings it. And with me... I brought Austin. Our oldest. He. was. straight. up. in. heaven. He felt all "grown up" like going on airplanes and enduring layovers whilst watching movies on his I Pad. Really though to be a West boy. I saw my future as we sat beside each other in seats E and F. I wanted to snuggle with him and kept trying to hold hands and he was all like "mom can you please stop touching me..." Gahhh! Kids not even 5 yet. He felt like a big boy so I let him. I know he will always be back for more and when we cuddled up to "nuggle" in Grammys bed his "grown up" status disappeared.

He played with dogs (and even pretended to be one whilst crawling in the crate and barking), he watered plants, he played in sprinklers, he stayed up late and enjoyed every single minute of Mommy one on one time. As did I. Those are the moments he will never forget. And Gram, as usual was amazing. She had presents prepared, snacks lined up and most of all Grandma wisdom to share. And when the night hours crept in, us girls would sit on the couch and well...not shut up. We talked and talked and it was good for the friggin' soul.

Jack, my godson, is enormous and gorgeous and so smart. I held him, made him laugh that awesome baby belly laugh and smelled him until the moment I left. Ohhh the baby smell. Heavenly.

I so happyyyy being there!

**********************
Oh and about those Canon lake June pics. We took roughly 1500 photos. I am editing and cropping and hurrying to get that post up. A-mazing pics I tell you. Oh' the boys never fail me when it comes to pimpin for the camera.

**********************

Gearing up for school round these parts. Apparently we are late to start?? I dunno. That said though, I will have an entire day for writing. As in no kids, Mommy will be working. I am so excited for this carved out time to blog and continue on with Paxtons book.
I. Will. Make. This. Happen.

Until next time friends!

loves...

Hugs,
J

Lake June Baby!

2011-08-02T20:22:00.000-07:00

How does the song go.... back to life, back to reality. Mmm hmm, less than 24 hours upon our return from one of the best weeks ever I was bellied up in the pediatricians office; one kid with swimmers ear and one with a yeast infection in a place where boys should never get one, just saying. The water and sunscreen took its toll on my babies. Eczema flared, toddlers sat in swimmies to long leading to exhibit B ; ) and baller little boys jumped off the second story dock that led to an ear ache so bad I couldn't take his shirt off. Oh the price we pay for fun eh'!

This was Mason and I in one of the early, note: early, 30 minutes of shut eye he got since sitting in that doctors office. Kid was in serious pain and was up ALLLL night. So tonight, my pictures are phone I Phone pictures, because we all know girlfriend always has her phone by her side making it all to easy to shoot the hell out of some good times. My Canon ones are to follow when I have had more than 30 minutes of sleep. For now though I couldn't wait to share one of the most relaxing, fun, belly laughing weeks ever! Lord knows I love some me some belly laughing and lord knows I need it. I have been all to emotional lately over Paxton. I just can't nix this fear that encompasses me. I may or may not have cried one to many times during this fabulous week out of sheer fear that he wouldn't be here next year to enjoy this little slice of heaven.... why, why can't I just push it aside. Gahhh!
Anyway back to the fun!

Like......oh I don't know, jumping off of two story docks screeching like a little girl the whole way down:

Or.....getting up on water ski's for the first time in ohhh' I dunno two decades and on the first try (just thought you should know that. This beaten body still has it! Booya)

But mostly it was being with my babies, my family and amazing friends for 7 days. Where from sun up to sun down we romped around in our "swim soups" with nowhere to go and nowhere to be. Heaven I tell you!

Or watching my Dad also get up on skis for the first time in even longer than two decades, my brother rocked it too. Oh my heart swelled to see my loved ones grinning from ear to ear and I laughed even more as the days progressed and we all gimped around as if being hit by a mack truck. Tubing and skiing are no easy task and our bodies are still letting us know that.

And in the words of Pitbull "and I might drink a little more than I should tonight..." will lead girlfriends to bust out to the The Wap on the lake dock for God and all the world to see. Awesomeness!!!!

Cause seriously isn't that what it's all about. Having fun, dancing as if no one were watching and eating up this life! We ate it up! Oh yes we did:

And the most priceless of all:

Making memories with my boys that will last a lifetime. Cheering so loud I peed myself when Austin my ultra shy boy jumped off the deck. Or fist pumping when Mason beat me in air hockey. Or tearing up when Paxton snuggled with me on the dock with a "sucker". They will grow up knowing that every Summer we go to the Lake. It's a place where life slows down and love races.

The view from there.....

We said goodbye to the First Annual Soulard/West Lake June Vacation, but know that there are many more to come.

Note the sign language for the letters S and W. Told ya, you go right back to being a kid there.

Until October Lake June, until October XOXO

Finale. NEVER!

2011-07-13T20:19:00.000-07:00

My oh' my, every day that I swear I will find time to sit down and blog time slips by at lightening speed. I wind up looking at the clock going when did it become 9 o'clock again! Paxton is obviously home from the hospital and I truly apologize for not at least having stopped in to share at least that much with you. He finally started eating three days into our hospital stay and just as I was about to completely melt for lack of car and its ability to get me my McDonalds diet cokes, we were discharged, praise God.
We even made it home in time for our Fourth Of July vacation week. And I do remember lying on the vinyl hospital couch absolutely positive that we would not be making it.... just as we have had to cancel two prior trips due to Paxtons health. Not that I care, lord knows I would go to the ends of the Earth for my little nugget. I am just so thankful we got to go and have fun.

The boys. were. in. their. glory.

*******************************

And so, as the days passed by I realized just how much time had flown by since we had first started going to the beach house for the holiday week. It made me more than a little nostalgic.

Take a look....

(this is my golden boy just shy of two years old)

(and mason to young to even join in the festivities. he was inside in his jams)

Or here, a year later....

(i am six months pregnant with pax)

then, there's last year when we were blessed with the gift of having our third son join us. after all we had been through the prior year, this getaway was A-mazingggg!

( i feel like when you look at this picture, the joy radiates from me and that joy is finally being home, two open heart surgeries behind us)

~2011~

This year we attended family beach week with more people than ever. Friends and family came from near and far to play with us. We all piled into rooms. Food, kids, sand and people everywhere.

It. Was. Awesome.

HLHS brothers and best friends (clearly) ~ Asher and Pax

(The famous Morgs)

HLHS Moms and best friends (clearly) ~ Me and Ashers mom Charity

Auntie Lisa and Daddy

Morgs and Nanny Max ever my "person", bodyguards, DC getting, just get it, belly laughing peeps!

(nice combover max, just sayin....)

~And 2011's Grand Finale~

(nothing melts my heart more...)

(pure joy at the sight of austin)

pax worked those baby blues and scored his first girlfriend

mason trying to hone in on brothers chick

um... when did I acquire a teenager? kid isn't even 5 yet and he comes up to my chest, as evidenced here:

and in the words of The Black Eyed Peas : I just can't get enough

austin declined attending the fireworks because they are to loud and chose to lay on the couch ringing my pink bell that has : ring for another drink inscribed on it. Classic West right there!

my boys. all three of them love me so deeply. and it's all a girl can ask for. if they only knew the love i have for them...

************************

mmm hmm.... it was that good.

and while our children refuse to show just how good our "acation" is here in this 100th attempt at a family photo, trust me when I say they had a bliz~ast! And once again we made memories that years from now will surely have me looking back, nostalgic yet again, wondering where the time went. So in the meantime I relish it all. The Mommy I love you's, the kicking, screaming, tantrum throwing moments because all to soon this house will be far to quiet. We have one more "acation" in store this Summer and it's coming in two weeks. This one may take the cake folks, so stay tuned. As always I promise I'll be back. Maybe not exactly when I say that I will, but know it is because I am knee deep in my kids, and when time allows I will surely be back to update you.

Love and Hugs~

ps: anyone notice some similarities between these brothers....

(Austin at the same exact age as -----------------> Pax)

I Know! I Know!

2011-06-21T15:39:00.000-07:00

I can hear the chatter now about how long it's been since I have posted. I like to think ya'll missed me enough ;) I have been away from the computer for so long because I have been knee freaking deep in getting my sh*@t back together after two years of total complete chaos. I am insanely type A when it comes to organizing and being on time and having it together only its kinda hard to have it all together when you have a special needs baby. Lord have mercy just when you get it together you wind back up where you started, as in the hospital. Oh yes, we are camped out in room 561 here at All Children's Hospital once again. Only after being transported via ambulance of course because when Pax does it, he does it right!

So here's the sitch.... Pax has not been eating. Eating is essential for him to maintain his weight while his heart works so hard. He is also a baller walker now and runs after his brothers stealing whatever it is they might have in their hands, which leads to piercing screams round the clock. So between not eating and walking Pax is looking a little...shall we say... biggest loserish. Not bad, in fact for an HLHS baby he is actually rockstarish. The main concern is losing instead of maintaining/ gaining and 4 bites of cottage cheese for breakfast and 1 1/2 chicken nuggets for lunch just will not suffice. Although I can't say I would mind looking into his diet plan. I kid people, I kid! : )
SO we load up to come get checked out for a typical appointment yesterday and Pax decides when I am just 15 miles from home to start projectile vomiting all over himself and the car. I have nothing and I mean nothing to deal with that kind of mess (i.e. note to self, put emergency beach towels in car for times like that) My "emergency tupperware box" in the trunk contained diapers, wipes, paci's, nuts, fruit snacks, crackers and the like, but no towels. Clearly food is always a priority in our house.
So I pulled over, stripped him, used blanks to clean up what I could, called Cardiology, tried to get my and hands to stop shaking. There came the adrenaline folks. I knew what was coming. Off to the ER we went. By 6:30 pm last night we were admitted in St. Pete. Baby "McDreamy" couldn't so much as be phased by all the chaos, he was just tickled peachy at all the ladies gathering round to ooh and ahh at him and let me tell you, boyfriend milked. it. up.

In a nutshell, they think he has gastritis from being on Asprin for such a long period of time, as in his whole life actually, so we are going to start him on trial Zantac and see if that helps get him to eat. If it does then we found the answer, if not we keep trial and erroring. I am hoping she figured it out though. Cardiac wise he looks to be right where he should be. Praise God!
He even got to get out of bed for 20 minutes today and take a gander at the outside world. And I got to get my exercise once he got tired taking his wagon for laps around the unit. Yay for me! Pretty sure I have gained a good 10 sneaking bites of Paxtons mac n' cheese that he won't eat.

Prior to our big adventure yesterday we have been one busy family going boating, to graduation/birthday parties and loving the time at home with no school or schedule to worry about. We wake up and end up where we end up. Last week we wound up at the Petstore and came home with two fish one named "Austin" and the other named "Mason" appropriate I suppose ; )

(we're not the wild wild wests for nothing)

So we relish the little things. We relish where we have been and how far we have come in two years. We relish that our single ventricle boy is walking and talking like it's his job. We relish the hard and the ugly for they have made this side of it awesome and beautiful. You can jump on board and go where this life is going to take you or jump ship and never find the glory in saying you've made it through the single, hardest time in your life. While this journey is far from over, we have decided to stay on board and fight through the good and the bad. For this....

And for this....

Eat it up friends! As I was wagon walking this afternoon I saw a 14 year old boy fighting for his life just down the hall. Daddy was bedside patting his hand as alarms sounded and doctors surrounded his bed. This morning as I went downstairs to find some sort of caffeine, I once again looked around at all the exhausted, worn down people trudging in the same direction as I. They were clearly here all night not sleeping just as Pax and I had not. They each had their own story, that I will never know, but I know the look, that exhausted walk and I know that we all fight our own fights, but here in this hospital I am constantly reminded to find my blessings and eat them up. Every. single. day! For we never know just how long we will have. It's a sad lesson, but a good one just the same because we parents of sick children never take for granted the time we do have. Seeing that 14 year old boy fighting for his life made me wonder if that would be me one day with Pax. Truth is, its very, very possible. Makes me sick to my stomach, but reminds me to hug a little tighter and laugh a little longer. I hope you all will follow my lead.

****************

ps~thank you morgie porgie puddin pie for stepping in and taking over for however long we are gone. you know i would be a complete wreck if i didn't know you were there to completely entertain, teach and spoil the boys. love you.

Technical Difficulties

2011-06-02T17:43:00.000-07:00

As evidenced by first glance at the blog when uploaded we are having a few technical difficulties at the moment. My girl Jennisa will be on it in no time, she rocks blogs.

In the interim I apologize to all of my peeps that I have not gotten back to. Two of three of the boys have ear infections and I am sick as well. Luckily, Pax, thus far, is the least sick of us all. Needless to say there is a lot of kleenex, antibiotics and lysol flying around here. It's funny how I wake up feeling like some kind of crap, wondering how I will make it through the day, then I get this mad, crazy second wind where I run around accomplishing as much as I can knowing that the crash and burn is just around the corner. Anyway, back on point, I apologize if I have not gotten back to anyone. My phone is near, but not a priority when I have two sick kids and one who is spoiled rotten (i.e. Pax) Yah boyfriend thinks the world revolves around him and it kinda does. His way of letting me know what he wants next is to screech at the top of his lungs whilst pointing at whatever it is. I can barely get my hair wrapped up before he's screeching at me for something. We are working on no with him, but god when that big bottom lip comes out I have a hell of a time not retracting.

Exhibit A:

Oh these boys rock my world. Whether it be Paxtons bottom lip or hugging my neck from behind while I am on the floor dressing his brother. Maybe it's Mason asking me if I am his best friend to which I reply, "always baby". Or Austin who screams to his brothers that I am "HIS Mommy!" Three little boys who tear through this house like hell on wheels and yet I am so dang blessed to have each of them.

It's been a rough year. I have trudged waters I never imagined I would. I still am. I am not sure I could even put into words (and that's saying something for me) all that life has taught me this past year. There were days I wanted to give up, days I dropped to my knees begging, days I raised my arms in praise. Days I felt joy I had never known and sorrow just the same. I have said hello and good bye. I have begun and I have ended. I have been whole and I have been broken. I have laughed my belly laugh and sobbed sobs that were carnal. I have felt more in a years time than I have ever felt in my entire life. Most days I don't know what to make of it. I question it, but in the end I trust in the journey. I trust in everything happens for a reason and nothing happens for nothing... So I continue on. Forge ahead. Do what I know to do and find joy in the most mundane places. When they boys are riding their "motorbikes" in the house (yes I let them, my walls are proof ; ) and they come at me full speed ahead and my jumping and squealing sends them into fits of laughter my heart swells and I feel it... that feeling we search our whole lives for. True, raw love.

I was reminded last week that it doesn't have to be huge to be awesome. It can be simple blowing bubbles in the bath with the boys instead of Walt Disney or a 7-11 sandwich instead of a steak. It is in the little things and the quiet moments that life lies. We go to it when we need it and carry on from there.

I had a wonderful weekend last weekend. It was wild, crazy, soft and sweet all at the same time. I will post pictures soon. Tonight though, I am tired from being sick and caring for three amazing little boys in spite of that so I am going to go "night night". I am going to crawl into bed, pull that pillow I love to cuddle into my body and head off to never never land. I love it there. In my dreams....

Until next time.

Goodnight moon,

Picture Perfect

2011-05-26T20:45:00.000-07:00

Don't ya just want to eat. them. up. Slices of heaven they are!
We have welcomed Summer weather here in South Florida. As in, sweating profusely from sun up to sun down, blasting the AC and wishing I was loaded enough to have the remote starter so I don't have to wait approximately a year for the air to be cold enough to not feel like my lungs are deflating. Yah' it's the dead of Summer around here boiling point hitting say oh'... 98 degrees.
The only way to truly get comfortable round these parts is to submerge oneself in water. Our days consist of finishing up the last couple weeks of school, coming home for happy naps and playing in the hose, on the slip n' slide or making our swing set slide a pool slide and whipping down it like "Superheros"

My favorite face that Pax makes. His "ball" face.

Mason insists on having "some cheers" every time we have a drink! So cheers it is!

The boys fakes "cheeeese" smiles

Pax is a tad spoiled and knows it. Here lies one of his infamous tantrums that always end in him throwing himself on the ground in a fit.

When the days seem hard and my heart is heavy, I just turn on the hose, lather up my babies and head for the back yard. Their giggles, enormous smiles and bare bottoms always lift me up.

************************

It will be going on 3 weeks next week that I took my trip to South Carolina. Feels like it was just yesterday and yet a lifetime ago all at the same time. It was everything that I have needed for a long time. I have never traveled alone. It was kinda cool riding solo. I put my earphones in and fell asleep on the plane listening to Lady Antebellum. I got there and hung out with two of the coolest, easiest people to talk to ever. Literally I don't think we shut up the entire time. It was shopping, stuffing face, baby talk, margarita drinking, baby loving fun! I slept like I haven't slept in forever. It. was. epic. Sleep is my best friend and lord knows we have long since broken up, so that little ron de vu was amazingly restorative.

Oh Jackson Ford. I adore you beyond measure beautiful boy! I so hope I get to be your Godmother since your Mama told me I am in the running ; )

Is there anything better.....

Love you Mom!

Believe it or not I was sober when I decided to ride this horse. He was just calling out my name the whole time I was there so ,on the last night I saddled up ; )

I will be going back up in July to spend a long weekend with my girls again. It is a little place of peace for me. I cannot wait to be back.

*****************************

It's late. Time to go to bed and try to calm my mind. My babies are doing well. Pax is walking and talking his face off and loves to give kisses. Austin is like all grown up and will no doubt be taller than my 5'2" self before he turns 7. And Mason oh' Mason he who adores his Mommy like no other. Mason may be the smartest 3 year old to walk the planet. Tonight he called me, and I quote, "a genius" Really cause I didn't learn what genius meant until I was like 15, how does a 3 year old know this... and he used it correctly of course, because I am in fact, a genius ; )

I'll leave you with a few more pics of my boo's.

I may be a little biased, but ya'll know where to reach me when you want to sign these boys for a modeling contract ; )

The boys and I's sign for I love you...oh Austin~bestill my heart.

Goodnight Moon

2011-05-23T19:55:00.000-07:00

I have been trying to post for a little over two weeks now... words escape me. I just know in the end that this life, this one life, is so crazy, beautiful... For all the hurt it entails, love is it's lining and nothing is stronger than love.
I am tired, beat, worn down. I will be ok, I always am, but for now I don't have it in me to put words to keyboard. Thank you for the emails, we are ok. It won't be a long one tonight, but as always I promise pics and a real, funny "Jenn" update soon.
It is when I am on bended knee that somehow life manages to lift me up when I don't think I can handle anything more. I trust that is around the corner....
So for now I am going to go across the house and down the hall to get my smurf of a baby boy out of his crib and bring him to my bed and spoon the living hell out of him. Oh if he has taught me nothing, it is to eat it up. Eat up this life people. The good, the bad, the ugly and the crazy, beautiful.

Goodnight moon,
J

I'll Take Stream Of Consiousness For $100 Alex

2011-05-01T22:49:00.000-07:00

If life would allow me, I would be on this blog every day. It's been one heck of a couple of days. Friday was Paxton's cardiology appointment. The entire two hour drive there was a full blown anxiety attack. Not only was it monsooning out, but I was terrified of what news we might receive.

My BFF met me up there for support and she was waiting in the office for me calm as a cucumber while Pax and I blew in there 30 minutes late, disheveled and out of breath from lugging him across the parking garage and through the hospital because naturally I forgot the damn stroller . CC did what best friends do and calmed me just by her presence! Love you ever infinity no take backs CC, thank you for always being there. Looks like we might be walking the next leg of this journey around the same time.... Heaven help us.

So Pax kept me entertained or maybe vice versa while we waited in between tests and for the doctor. He thinks he's a big shot now that he walks and romped around all bad ass while I tried to remain calm.

Y'all don't understand, well some of you might, how the mere sight of the Sunshine Skyway Bridge (for my Facebook friends that's the bridge I always say I am going to jump off of when I am melting. PLEASE NOTE: I am not really going to jump off a bridge) it all comes back!

Remembering how I felt the very first time I saw that bridge 33 weeks pregnant in route to find out if my son was going to live or die. The hundreds upon hundreds of times I have driven over that bridge while separated from my other two children, living in another city for months on end while my son healed. I HATE St. Pete. Like with a passion. My glass is typically always half full and if I could get it right, I would refocus myself and say I love St. Pete for saving my son. And I do. But that town holds far to many memories of sheer terror, loneliness and sadness. St. Pete will always be a part of my life and I have come to terms with that, in fact I am ok with that because it means Pax is still here with us. It does not mean though, that I have to like it.

Pax did what he does best and sucked it up buttercup, flirting with every.single.woman to grace his presence. He showed them his new walking moves, batted those baby blues and side smiled as if he had practiced for years. The ooh's, ahh's, the he's so bigs, those eyes comments just kept on a comin! Pax drank it in like there was no tomorrow and I grinned from ear to ear that he was mine. He screamed the entire time during his echo and we only got what we needed thanks to my acting like a complete idiot to entertain him. I am not sure if he was laughing at what I was doing or the fact that he actually got me to be so ridiculous.

That echo he fought so hard against showed that he is in fact outgrowing his Glenn shunt. This is why he is turning blue more and needing O support at times. We are going to keep monitoring him closely. Our "goal" is to get him to next April, However we (we as in, his doctor) do not think in actuality that will happen. IF we can, it would be ideal to get him to April because October, which is when we are thinking he will be ready, is height of RSV and flu season. We do not want to put him at anymore risk than open heart surgery itself, but if he can't hold out until April we go ahead with the surgery around his second birthday and pray he avoids catching anything. If anyone thinks I am a germ freak now, watch the frig out!

So after two hours of testing and consults, the two of us wilted and tired, headed for home. Lets just say the anxiety of this appointment was all to much for me. Which in turn had my brain and mind straight up jacked. To prove this I headed the wrong way on the interstate for about an hour. To which I finally pulled over and cried my eyes out at some random gas station somewhere heading away from home. I was some kind of pissed at myself to which I proceeded to call my husband and go off like a sailor. Screaming that I just wanted something to go my way for once. It was one of those toddler tantrums I talk of. Were I not surrounded by strangers I may have even gotten on the ground and started kicking too.

In the end we made it home. Quite quickly in fact at around ohhhh SIX pm that evening. Ugh! I was done and done. I bathed Pax, loved on my boys and drank what may be one of the strongest cocktails ever. Sometimes a girl just needs a little three olives to take the edge off. I needed a shower, but hey that requires way more effort than I had, so I plopped myself into my chair and checked my emails. As per usual God works in mysterious ways. Another Dad that reads my blog sent me the sweetest, kindest email. As I continued reading I felt the harshness of the day begin to fade. He and his wife get it. They understand when I am real on this blog. When I lay it all out there dirty, ugly, thrilling, happy and sad. There are so many emotions that go along with this journey and from day one I have always wanted to be real about them. Their blog too, is real. They both write on it (which I think is beyond cool) and when I read their entries I know I am not alone. He wrote that the one thing we can give each other in this is the "comfort in knowing we are not alone in this". It is true. Just hearing that people read makes me feel like this is not in vein. That sitting here at nearly 11 o clock at night is not in vein because

"it's helpful to know that there are others who know something about it. I find your blog does this for me more than most, so thank you." No longer did the day and it's jagged little digs hurt nearly as badly. After all, had the day been peaches and cream then this journey wouldn't be real. There would be nothing to write and a whole lot less to appreciate.

It never ceases to amaze me when that gel to skin and probe pulls up my sons heart on a screen. His half of a heart. His broken, single ventricle of a heart. It works hard, that little heart and it does not give up. That heart rests inside the happiest baby I know. The kid is the epitome of happy! He teaches me every day to quit my bitchin because if he can go through this life the way that he does then there is pretty much nothing for me to complain about.

**********************

The email also said:

"we love the way you never lose sight of the severeity of HLHS yet embrace life and your incredible kid. I hope you'll be given back the outlet of running soon. You talk about a toughness you have seen in yourself and I agree. The determination to try and live a normal life, exercise, love your kids and go out on the boat with friends is an act of defiance of sorts. You aren't running from the scary reality, but also not letting it steal a disproportionate share beyond what it already has."

I guess I never realized that defiance, but ultimately that is what it is. I acknowledge this for what it is, but damn if it's going to bring us down. I used to feel guilty for doing things for myself such as running or going out without the kids. In fact, until I read that email, I felt guilty. I no longer do. He is right in that keeping some semblance of a normal life is healthy. That amongst the oxygen tanks, boxes of medical supplies being delivered, syringes and pharmacy runs is life waiting to be snatched up. I am snatching the crap out of this life people! It is a gift. I see that through Paxton and while there are days I do want to jump off the SSB because the fear and reality of it all seems to be to much. I also know that it always lessens, that tomorrow brings a new day and with it a renewed sense of hope. While Pax can never be "fixed" I can choose to drown myself in it or pull myself up by my flip flops and carry on ; )

Besides, one can only be sad for so long when the view is this good:

He will always know his Mama as the silly, crazy acting, big smile, belly laughing mama that I am and when I melt I will allow myself to step aside, throw a tantrum at the unfairness of it all and then return to what he needs me to be~HAPPY!

**********************

Speaking of boating, Saturday was Paxton's very first time! The other two boys have been boating since they were in carriers. It's all they ever knew, but I have just been to terrified to take Pax.

However, in typical Paxton fashion he handled it like a trooper. Shocking, I know.

His favorite thing to do was throw sand at his Mimi and her reaction made it all the more funny.

( Mimi getting her tan on)

(Pax laughing at Mimi)

We were on the water from 11 am to 4 pm. When Pax got tired we put him in his stroller, Nanny Max and I rocked him back and forth until he fell asleep all salty and sweaty.

In the end South Florida brought afternoon storms with it and we got pummeled with rain on the way home. I, like any Mom would do, barricaded myself around the older two boys and Max took a beating in order to keep Pax covered in his stroller. Quite frankly it was the most comical scene ever. Taking shotgun was my super type A step mom just getting beat up. Me backwards hovering over my boys trying not to fall with each wave we hit.

Nanny Max bringing up the rear and yes, she is always this funny!

We all shivered for like an hour afterward (except Pax who completely shielded in his stroller), but it was so much fun. I asked the boys today if it rained on the boat yesterday and Masons response was "it was fa-reezing (whilst fake shivering) but you kept us covered in your pink jacket Mommy". Kid is to smart for his own good. I didn't even remember I had a jacket on, let alone the color.

Today I had a migraine to top all migraines but hey same story different day right. Gave myself two shots in the thigh, vom'd all morning and rallied around 3 pm. Sunday fun-day, erh or not.... Thank you Max for taking care of me! I <3 You!

I am headed out of town next week. Will be the first time I travel alone, like ever. Gonna go visit my girl Nikki in NC who just had her first baby boy, Jackson. I am kind of excited to have me time. Course I will surely be xanax'd out come D day because the anxiety of leaving my babies and flying will send me into a frenzy! Truly though I am not a suicidal bridge jumping alcoholic druggie. Lord if I haven't made myself out to be one in this post ; ) Guess like I always say: gotta keep my wits about me!

It is now nearing 11:30 here. Tomorrow I will be kicking myself for staying up this late. I have a long list of honey do's for myself. No rest for the weary though!

To all of my readers near and far, thank you for reaching out to me. It means more than you will ever know. It motivates me to press on in finishing Paxton's book and in continuing to write here on this blog. I wonder where we will be next year at this time.... wonder where this journey is going to lead us. I trust in it and y'all should too. I have met some of the most amazing people through Paxton. Many that I will cherish forever. Big heart hugs to all the heart families "limping along with the Wests" (thank you Rolf, love that!) I will continue to limp on for my son and for all of the others traveling this same path.

That is a stream of consiousness post! Now if you will excuse me I have a baby to go medicate and pull out of his crib onto my chest to smell, kiss and rock.

I will leave you with some more pictures from our boat day!

(Nice hand placement there Mae!)

(mamas from west virginia, can you tell.... ; )

(cross fit what...)

(My boys working their mojo with the ladies)

Night all

A little of this and a lot of that...

2011-04-26T18:03:00.000-07:00

I haven't slept in light years. I actually think you can see the sheer exhaustion in my eyes in the picture below. There is so much that races through my mind twenty four hours a day that not even sleeping pills will help. Yep, I have resorted to the big guns mainly to try and help prevent the migraines that seem to creep up on me nearly daily and had me in the hospital twice last month. It is said that stress and lack of sleep amongst other things trigger them and both of those stressors are forefront in my life. I went to a neurologist to discuss "options". We decided that since I clearly can't get rid of the stress in my life that we would at least try to get this Mama some sleep, but to no avail Nothing and I mean nothing is working. In fact I am not sure what a good nights sleep feels like anymore. Case in point below:

Pax is on oxygen. He suddenly has this inability to regulate his body temperature. He is consistantly blue and panting. His heart is showing me signs of struggle. I am to say the least freaking the frig out. He has a cardio appointment Friday and I am dying to get there and dreading it all at the same time. I need answers and yet I am terrified of them. Oh dear lord my baby boy. I can't even breathe typing this.

There is nothing I can do to change the outcome of that appointment. I know this. I have done quite amazing in the past year and a half of letting him live. Of handing it over, but damn if seeing the changes in him doesn't walk me to the edge.

******************

I spend a lot of time during the day trying to figure out what to write on this blog. Just yesterday I got an email from a new HLHS mom who shared her story with me and I realized yet again how much just laying it out there helps. Part of me wants to say this is easier than you think, it gets better, it doesn't affect your life, your marriage, your hopes, your future. But the truth is, it does. HLHS changes everything. When you walk in Paxtons nursery there's a huge oxygen machine right there, when you open his cabinet there's meds, syringes, pulse ox monitors, stethoscopes and nasal cannulas. It's Pax. It's all I know. The entire family was over for Easter yesterday and in the middle of it I am breaking out his pulse ox to see what his O2 sats are, then throwing on his nasal cannula on like it's second nature. I could see out of the corner of my eyes that some of them staring, but I kept my focus and when all was said and done, I took a deep breath knowing I controlled all that I can control and the rest wasn't up to me. With shaky hands I ate a small plate of food never taking my eyes off of him. It's crazy right. Yet its normal to me. I don't why, I just know that I know how. I can't question it any further...
If I have learned anything this past year, its that you gotta roll with the punches. Take it where you can get it. Try not to question to much and love with all of your heart. I am getting pretty darn good at that.

*******************
I learned yesterday that heaven has gained another HLHS angel. I will never understand and right here is where I have to stop myself from questioning and roll with the punches. Tomorrow it could be Paxton... there are simply no guarantees. I sit here tonight in my big red chair hurting for those that have had to say good bye and grateful beyond measure because my journey could and can take a different road at any time.
My baby boy has taught me so freaking much. The person I was before him is so different than the person I am now. I take risks because who knows if we have tomorrow. I love harder than I ever have and let those people know that. I hope more than I ever have, I hope for the future and all of the things we can't control. I never give up that...maybe...just maybe someday I and others will see that there is always hope. That things happen for a reason and sometimes you just have to trust in that. It's not a lesson I had learned before Paxton, yet I searched and searched for a reason as to why...why... and I finally learned there isn't one.

So I fly by the seat of my pants more, sing and dance truly as "if no one is watching", love harder, hope deeper, try to say how I feel even if I am not sure I should....

It' a learning process ya know. What I do know is that things happen for a reason. Some people question that, I do not. I believe that everything happens for a reason and Paxton was given to me for a reason just as Austin and Mason were. I have learned just as much from them as Pax, maybe not in as profound ways or ways that drove me to the edge, but I have learned alright.

This post has been a wicked rambling one, but sometimes that does a girl good eh? Summer is just around the bend and I anticipate big changes and lots of fun...

In the mean time lemme share with you a few pics from this past holiday weekend....

The first few are of me and "the gang". Morgan is the 21 st birthday girl. Morgs has been a part of our lives since Austin was born. In fact she was the first "babysitter" we ever had and let me tell you as a first time mom that is saying something. He's not my "golden boy" for nothing. Nearly five (yes five) years later "Morgs, Morgie, Morgan" has become a part of our family. I wouldn't dare call her a babysitter. She's more like my sister or "my person" for those who watch Greys anatomy. Morgan was there the day Mason was born, first visitor actually. I called Morgs the day I lost Tadem from my hospital bed in the ICU and together we cried. Morgan is who I text or talk to when Mason and I are in the ER for RSV at 1 am. Or who comes and stays with me in the hospital when Pax has a UTI. She was there when his g tube was pulled. Best of all she happens to be as infatuated with McDonalds diet cokes as I do. There is and always has been this calming presence about her. If anything affected her at all I wouldn't know until I got a private fb message from her.... she, like me, is better off just writing about it.
p.s. I think it's high time for one of the messages I was talking about don't you Morgan...just sayin ; )

In anyyyy case, this Easter was her 21st birthday. Epic right. So we loaded up on the boat and went to a little island called Key Wayden and partied like there was tomorrow, truly like there was no tomorrow. Sunday rolled around and I wanted to do it all over again.... it was that good people!!!!

We started at 11 am and lasted on the beach, in the hot sun until 7 pm so as you can imagine, these are the before pics. Truly though, don't we all deserve a kick ass weekend to freak our freaks. Happy birthday my "Morgs"! I never knew what an intricate part of our lives you would become that first day, but damn if I don't love you so much. One day the tables will turn and I will watch your babies!

Easter was awesome. My boys love a par-tay and a par-tay was what we had!

( Ma Ma and her oldest born)

(Sissy and I)

(Everyone thought it was funny to see me stuffing face with my Aunt Joannes potatoes! OMG, delish!)

(Austins first catch ever, epic for him!!!)

(Mae checking out Austins catch of the day)

(Mama and Paxie)

(Nana and Pax)

( My brother/Uncle Adam with the boys finding their baskets)

(Pa Paw and Pax)

(Morning Easter egg hunt)

"Sometimes people come into your lives and quickly go. Some stay awhile and leave footprints on our hearts and we are never, ever the same."

I have a big girls night out tomorrow to go see Usher and Akon in concert. This should insanely fun and interesting to say the least. That said I will update Friday after we get back from Tampa for cardiology.

Night all~
J

2011-04-22T20:21:00.000-07:00

Everyone has their outlet, their way of coping. Mine happens to be running. I cannot do that right now, haven't been able to for two weeks, had to skip out on a big race because my knee is in a bad way. To date I have had a cortisone shot and an MRI. The truth is, I am pissed. I am angry. Running has saved me. Healed me in so many ways. Ways I didn't think I could be healed. I am far from better after what I have seen this past year there is just no way to be ok just yet. In fact, I may never be ok. My son is sick and that's the bottom line. I carry this weight around with me every day. So the only way to release some of that is to run. I am done, for now anyway. Surgery more than likely looms in my future. Chicago is still in question come October. I am angry. Because dammit I need it. I need running like I need oxygen. It's just the truth. When my world is crumbling around me, I throw on my shoes, my headphones and run like the freaking wind. Oh' it feels so good. My body feels so free. I need to run right this very minute so badly I can't see straight and I can't. The hot tears pouring down my face in anger and sadness. I'm just sad tonight. I just want one thing to be easy right now. Let me have this one thing. Is that so much to ask... I have paid my damn dues.
So here I am heartbroken and sad and like I have done so many times in the past I come to my keyboard for solace. I can't find it in the pavement right now, so my keyboard will have to suffice. This keyboard that holds so many of my tears. This stupid keyboard has been there for me more than any human being ever has. I like it. It won't hurt me. It has never let me down. I always feel better after I spend some time here.
Paxton is walking now. He is proud and I am glowing. I am however, scared. To death. He turns purple at least once a day now and I mean purple! He cannot regulate his body temperature. He pants like a rabid dog when just throwing a ball. His heart is tired. I am his Mommy and I can see the change. Surgery looms in his future too and it's going to be sooner rather than later. I can't breathe when I think about it. Can't put him down. I just left his room where I snatched him out of bed, laid him on my chest and rocked him. I sobbed. Sobbed that I can't fix this for him. Sobbed at the unfreakingfairness of life.

Some days, tonight being one of them, I wonder just how much one person can take before they snap. Like I kinda want to snap right now. Just roll around on the floor like a toddler and kick and scream and cry. Why. Why me. Why us. Life as I knew it is over and that's ok because I have him to show for it, but good God if I haven't changed in so many amazing ways and yet some not so good. It's just the truth. "Wounded war veteran" that's what I have been told I am and when I look into the eyes of my best friend CC who has traveled this same damn road, I see a wounded war veteran and I always seem surprised when I realize I am looking at myself. I am like a vault now. Keep it all tucked inside. Don't stop moving so you don't have to think. Go through the motions without ever skipping a beat and yet I am broken inside. Truly. You just don't go through this and come out whole.
My glass is always half full, but damn if I don't have some bad days here and there. When the one thing that keeps me sane is taken away I falter. I have nothing, but this damn computer. Like here where I had nothing but a computer to get me through, I did what I had to do. Just as I will tomorrow. Tonight I will cry endless tears for all that is, for all that might have been, for all that I would change. My heart hurts for so many things right now, but I will make it. I always do.

"For all that has been~thanks! For all that will be~YES!"
Oprah

For all that has been, I am thankful, even the parts I think I would rather not have had to endure. They have taught me oh' so much and really though isn't it better to hurt and feel something than to feel nothing at all. I don't know why God keeps testing me. I just know that no matter what I will make it. Sad, hurt, broken yah' maybe. But tomorrow is a new day and I will pull my damn boot straps up and keep on keepin on. It's all I know to do. It's all I have ever done. When I feel alone, I will come to this keyboard. When I feel helpless, I will think of all that I have done. When I feel heartbroken, I will concentrate on healing.

"Anything worth having is worth fighting for..."

What I want to fight for is happiness, a life lived to the fullest, to love with all of my heart, to let go of it all and just be. And with that will come peace and freedom. No one can make us happy, but ourselves and while I have a long way to go on this journey, I will keep trudging. I will keep trying. I will keep being who I know to be and whatever comes with that will just be an added bonus.

Life ain't always beautiful, but its a beautiful ride.... and that is so damn true.

G night friends... I will check back in on Easter when a new day has sprung and with it the old Jenn will be back in business...

Love
~J

Special Needs Glasses

2011-04-12T20:00:00.000-07:00

Why hello there! Betcha you weren't expecting a post since its been... oh' I dunno~ forever! I stopped writing for quite some time. I would try and I just didn't have it in me. Then the other day I received the most amazing email from a blog reader. He inspired me to get back on the horse. That it matters. That someone is reading.
So here I am friends!

This Dad has been my buddy for awhile now. I am not sure how he stumbled upon my blog, but he did and wrote to tell me about his special needs son in which I wrote about here. Holy cow what a year can do! It never ceases to amaze me. Today Tapp is doing well and happens to be insanely gorgeous. Will he have his struggles? Yes he will, just as Paxton will. Will we as their parents have ours? Yes we will and yet there is something comforting in the fact that as alone as we all can feel at times, there are people all over going through similar things. As I sat at a stop light reading his email tears welled up in my eyes because it had been nearly a year and for each of us probably a lifetime of change in one small little human being. In my reply I spoke of how life changes when you are given a baby with special needs and oh' does it...

It gets harder and better all at the same time. Worry lines every cell of your body and yet you are given these "special needs glasses" the minute they arrive. These glasses that allow you to see everything for what it is. In spite of the fear there is the ability to see the fragility of life and the beauty of it in richer, deeper ways than ever before. As I wrote to Matt, some days those glasses fog over and the clarity fades, but they always clear and when they do the itty bitty moments are all the more joyous.
I spend a great deal of time trying to teach myself to not let the worries of tomorrow overshadow today and that is hard to do when you take your boy in the pool and have to rush him to a warm bath because he turns blue even though its 90 degrees out. And as I did that the glasses fogged and instantly I wondered if I would be loading up to head for the hospital. It is always the first thought in my head when anything is off with Pax, but he rallied and so too did I. My glasses cleared and I let him be a "typical" child which means crawling around on the patio getting dirty and dripping ice cream cone all over his gorgeous face and down his shirt. As much as I want to keep him in a bubble, I also want him to live and when I see the smiles that consume his face when he gets a chance at freedom I find I let the leash go just a little more because in the end my friends, god forbid something should happen to him, I would want to know the time he had here was amazing and fun and free. He is pent up enough each time he goes to the hospital I do not want to confine him anymore than that. I want him to swim and run and be all crazy with his brothers.

So those of us who wear those "special needs glasses" are pretty amazing because we have taken the gift handed to us and learned from and shared it with others in hopes that all of us someday will wear the glasses that allow us to see how amazing life can be not just in the big moments, but in the small ones too.

(love the tongue of concentration)

There is such a depth to loving a child that words cannot describe, but never knowing how long you have that changes everything.

So dear Matt and all of my other peeps that walk this journey along side me:
together let's rock our glasses because damn if we aren't all the more stronger and wiser wearing them!

****************************

So we have been busy roundtheseparts ; ) The boys are growing like dang weeds. They're turning into sassy wannabe teenagers, outsmarting me and crap if they aren't adorable whilst doing it. S'ok! They don't call them Mamas boys for nothing.

****************************

I have been racing pretty often and nothing makes me feel better in this life than a kick a*# run. I am signed up for my first full marathon (26.2 miles! Straight up crazy I know) in Chicago on October 9th, 2011 which happens to be my heros 2nd birthday. Swear to God I will cross that finish line somehow, someway people. For him, he who was has been in more pain than we can imagine. Oh' I can't even freaking wait.

(mud pits beyond mud pits and I loved every minute of it)

(My Fan Club! I can feel the enthusiasm : )

(My best friend Charity and I. Her son Asher has HLHS too and running very literally saves us. Together we ran a 1:54 half!)

My dad is a cross country/track coach at a local high school here. Has been since I was a wee one. Guess that explains my mad addiction to running. I ran for him in high school and following in my footsteps are my sister and brother. Last month (yah I know way behind here) Dad held his yearly cross country banquet to award all of the kids for their hard work. In addition to the 3 awards he has been giving out for years, he decided to add one this year

(kleenex please)

Sommer is my maiden name which in turn means my sister and brother received this award on its first year. Dad cried while giving the speech as did my sister and I. Then I gave a speech and as I looked out over the parents and runners all I saw were tears. Real, genuine tears for his struggle and it meant the world to me.

And I glowed with pride that he was mine, my Dad cracked jokes and my sister wiped her tears. It was glorious...

***************************

***************************
Well, I suppose it's time for me to turn in now. Never never land is one of my favorite places to be. I love that place in between awake and deep sleep. Where at times the body jerks reminding you of where you are and where you are headed. The quiet of the room with nothing but the purifier to lull you, the soft, sweet smell of sheets, the cool side of the pillow and these guys who are the cherry to my sundae!

Sweet dreams
~J

Why Hello There

2011-03-21T07:37:00.000-07:00

It's hard to believe its been a month since I have last posted. It has been weighing heavily on my mind, as has other stuff and truth is the other stuff won. Thank you to the readers who have reached out to make sure that we are ok and to let us know you have missed us. Truly, you made my days.

So I have been living in this pendulum between insanely grateful and scared to death. I am not sure if just over a year puts it all into perspective or what, but my fear that seemed to be controlled, although in hindsight was just to busy to grasp, is now in full force. I cannot get over this nagging feeling that something is going to happen to Paxton. I don't know what it is and I am in a full fledged boxing match over the conclusion that it's mothers intuition or just plain fear/anxiety. Paxton is so amazing. Oh he's so happy. Sees the rainbow instead of the rain. Makes lemonade whenever there are lemons. If I could just be like him we'd be all right. He is almost walking and when you see how proud he is pushing his walking train around you will light up like a Christmas tree just as I do. It's impossible not to. The kid is infectious.

The boys have all been sick and I am now sick. Pretty much it's like wildfire in a house of 5. I swear it just goes in circles. Only one who has avoided it all is Daddy. Course spooning with them after they just get done puking is pretty much asking to get sick, but I couldn't stay away if I tried. And here I am laid up in bed for 3 days with 102 fever, body aches and nausea. This only after going to the hospital last Wednesday for a migraine so severe I couldn't keep anything down for 24 hours. Yah' it's that good people! So I got fluids and some killer drugs only to turn around and get the flu. On the bright side, I showered this morning! It's only been... what 36 hours because the thought of getting under water when I felt like an iceberg already was debilitating.
Who knew though what a little soap and razor action could do for a girl!

So here we are a month later. Bills to be paid, crap to be done and a list the has gotten infinitely long. I breathe. Remind myself that it will all be here to tomorrow too. That while I am not the Mommy I used to be, the one who had her shit together at all times, I am also not the Mommy I used to be... I am Mommy to a special needs baby. He who has shown me that it really doesn't matter. Let the bill collectors call asking for money for a $600,000 surgery and find it comical to answer and then hang up on them just as fast, as if in middle school doing a prank call. You pay what you can and that's what matters. Find the humor in running out of pull-ups and using Paxtons diapers as replacements instead of beating yourself up over nothing. I am not in fact, Costco after all. I am learning to love the new Mommy I have become. She's not as type A have it all together as she used to be, but she tries and she loves. She spoils her boys a little to much, her heart hurts for what they have been through this past year. She clings a little to tightly to a little boy who has moved mountains. She tries to claw her way back to the wife she used to be. Baby steps. It's all baby steps. Nothing monumental happens without roadblocks.
I take the ebbing and flowing as it comes. Try not to question it. Try to realign myself to that place of peace and trust. That place of handing it over and knowing the destination is out of my hands. My oh' so controlling hands.
Oh' it's good to be back. To tune out and hear nothing but my fingers grace the keys. I have missed you dear blog. If for nothing else than to just pretend I am the writer I have always wanted to be. Oh yes, someday just as with everything else....
I cannot wait to post pictures of my ever growing babes. They are truly heaven on Earth!
I will be back! I will. I am realigning myself to those things which make me whole. Writing is one of them. My babes are one of them and if I blog for no other reason than my kids then that's reason enough.

Please hold! Cause I'll be right back!

Hugs~
J

Holy Stream Of Consiousness

2011-02-22T18:16:00.000-08:00

This post has been a long time coming and I apologize. My life is crazy. I stop a lot and wonder how it got like this. When did the pace pick up to lightening speed. Where evenings end with me sitting on the couch "whewing!" the day away. In all honesty I thrive on it I suppose, but I do wish there were more hours in the day. Time to stop for the things I love. Like writing, that is easily put to the wayside when other things wait in line.
Paxton is home. We have been home for nearly two weeks now. In that time I have been to a 13 month old HLHS babies funeral, spent many a nights crying over the unfairness of it all, run a race that led to a personal record.

(my cousin amy, my sissy, me, my girl charity and kimmie)

I have spent time with my babies in the backyard and gotten a "hypoallergenic/dander free" puppy to accomodate Paxtons allergies yet allows the older two the dog they so desperately beg for.

Oh' life you are wild. You are crazy. But I love you. I am kind of like life~wild and crazy I've been told. I just keep going. Don't stop cause if you stop you'll have to think. So I drive here and there, run to and fro, plan this and that all to keep the pace that I sit and wonder about.

I need to write thank you cards, need to pay bills, need to make appointments need need need.
So I stopped today. Stopped to breathe and reach out to my peeps. To let you all know that my baby boy is home. He is a fighter. He said hell to the no about spending the weekend in a hospital so they released us and we came home to brothers and hung out at the park while other parents stared at the rash all over his body as if he were some contagious freak and my mama bear instinct eyed them down like a hawk. No it's not contagious folks, he has half a heart and can barely fight the common cold so F you!
Yah sometimes I get a little touchy about it. I get defensive. He's had enough to fight without others passing judgement on a 16 month old baby.

I want to shout to the world, have you no idea what's important! Have you no idea how precious this life is. It should be a rule that everybody spend time in the ICU at a Children's hospital. Every person to grace this Earth should be required to endure that because this world would be ever so much kinder, calmer, grateful.

I have a race this weekend. I am psyched. The pavement is the only place I feel whole. Where I am doing good and right. My girl who fights this same fight along side me will be there running it with me. This is our outlet where no judgement is passed. No expectations held. We just rock it. We leave it in the dust behind us because we are ONE BAD MOTHER RUNNERS and if all we have is each other and our babies in the end then well, we did one thing right.

(thanks C for my car magnet, i am in love with it!)

Yah it's a crappy post. Don't have a lot of inspiration to give today. Only that I wouldn't change it for the world. There are highs and lows to this just as with anything else in life. Sometimes word vomit helps. Sometimes it doesn't. Today I am giving it a shot. Taking this weight on my body and throwing it onto the keys of this computer hoping for some release. Sweet release!!!

And now it's time to go walk this new puppy (cause really what I needed in life was a damn puppy, but if him sleeping in bed beside me doesn't tell you that I already love him I don't know what does) get the car cleaned, pick up the boys, haircuts, lunch, naps, somewhere in there workout, play outside, dinner baths, bed and a big fat "whew!" at the end of it all.

And when I am old and gray I will still be doing the same thing. I know without a doubt I will still live life at lightening speed. It's how I am. It's in my blood (thanks Dad ;)

Some days I wish for a slower pace, but mostly I just wish for peace in my heart. Peace so that I am able to allow myself slower days where thinking isn't avoided. Where memories can filter in and out without hurt or sadness or fear surrounding them. I'll get there. One day at a time.

"Life Ain't Always Beautiful, But It's A Beautiful Ride"

Love

Heavy heavy heart

2011-02-09T19:40:00.000-08:00

I learned last night that another HLHS baby has gained his wings. Kian Moss fought for every day that he was present on this earth. When I pull up his blog and see that radiant smile, I simply cannot believe he is not here anymore. I spent a great deal of yesterday vacillating between the unfairness of it all, feeling guilty and feeling the pain, but not actually knowing one ounce of it. It is my biggest fear no doubt and as I sat rocking my own hlhs son in the hospital rocking chair (yes we are in the hospital) I felt like I couldn't breathe. Couldn't hold him enough. Smell him enough. Squeeze him enough.
This entire unit is full. Full of sick cardiac babies and yet I know there will never be answers, even though my heart seeks them at a time like this.

I have decided that chubby cheeks, bright eyes and radiant smiles are all pre reqs for hlhs. Every baby that I meet with hlhs has these qualities and they tell their story through features instead of words. Some days, I have decided words would never be enough anyway.

********************

Paxton is back in the hospital. He came down with a virus that has really kicked his butt. We were admitted Tuesday night and were hoping to make it a short stay, but the virus has gotten worse since we have been here. Clearly I brought him in just as it was beginning and it still had to run it's course. He started with 103 fever and has since gained a full body rash with welt like blisters all over. He is on iv fluids and antibiotics because he is refusing to eat or drink. While his fever has broken we have set up shop here until we see that his symptoms are subsiding instead of worsening. Typically I am in this mad rush to get the hell out of here and while I am still desperate to be home with my other two boys, I remind myself of how much worse it could be and to relish all of the moments. Even ones we would just assume not have such as sitting in the hospital.

Or having to say good bye to one of the favorite people in my life and explain to him as he cupped my face in his hands saying "but I want you Mommy" that I promise I would be home soon. All whilst not crying my face off.

And when he was out of sight, I lost it. I miss them so deeply when I can't be with them. I stood in the tunnel looking out the window as they drove under sobbing and waving like a lost puppy. It was a long walk back to the room. The big, hospital hallways seemed extra large and empty with my meager self walking through them. I, of course, pulled it together by the time I opened the door to Paxtons room, because it's what we do here. Because it could be so much worse...

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It's still hlhs awareness week and before I had to jump ship and head to St. Pete I had put together a slide show. I would like to share it with you all. It meant so much when I put it together, but man if it doesn't mean the world to me now as I sit here mourning the loss of one of Paxtons heart brothers.

(turn off blog music at the bottom so you can hear slideshow)

This journey never ceases to rock me to my core...

"I never feel more alive than when I am in great pain, struggling against insurmountable odds and untold adversity. Hardship? Suffering? Bring it! I've said it before and I've come to believe it: there is magic in misery."

~Dean Karnazes

Love

a little of this and a little of that...

2011-02-03T13:09:00.000-08:00

February proves to be a busy month this year. Iam going away this weekend and next weekend for a baby shower. I am heavy hearted at the moment over this because as crazy as it gets around here, I never want to be away from my kids for extended periods of time. I panic and think of all the things that could go wrong. Once I am physically away for a couple of hours, I do seem to adjust, but the initial departure kills me. Especially next weekend when I get on a plane. There's no quick return and that freaks me out. With that said, I know they are in good hands so I will try to enjoy the alone time as best I can.

This month is also CHD Awareness month. For obvious reasons this cause is very near and dear to my heart. I have walked heart walks with pax, alongside dear friends in hopes of raising money for this cause. I run in honor of my little heart hero's every time I pound the pavement. The sad thing is, and I fully admit until it struck me personally, that i did not know that congenital heart defects kill more children and babies than all childhood cancers combined. It is most certainly a cause that needs far more awareness. I know of St. Jude and all of the cancers among children, but what I did not know about was just how large the heart world was, especially among children. When I walked into the cvicu 9 months pregnant I was astounded at it's size and how full they were. I literally had to be held up because I could not believe this would be home in a matter of weeks. I sadly and shamefully admit that I did not know. When I was told my son only had half of a heart in utero, I can remember thinking "I'm sorry, what?" You just don't know much about it until it smacks you dead in the face. Today I know with a clarity that brings me to tears. Wearing red tomorrow in support of CHD Awareness will bring me to tears. Pax brings me to tears. sad ones and good ones. He knows no better, but I sure do. His journey is far from over and so many of his friends are fighting this same fight. It's scary. Every. single. day. is scary. Every single day is meds and checking profusion and color. Panicking if he gets a simple bout of diarrhea because if he gets dehydrated we are outta here. Receiving boxes in the mail with pulse ox probes and oxygen tubing. It's day to day for us, it becomes a normal, but the fear that gets pushed down is never pushed away, just down. So I ask anyone who reads this to look at this face:

and wear red tomorrow in his honor. to support the fight that he fights every day of his life. From the moment he made his entrance into this world he had to fight. Within an hour he was poked and prodded in more ways than will ever be fair and that was only the beginning of his journey. While it's easy to look at the pictures I post of him in the hospital and feel it in your hearts, those images fade and the deceitfulness of HLHS comes into play. It's easy to forget the gravity of it all when someone sees that gorgeous smile, or hears the shrieks he can belt out with the best of them. So many don't know how many babies lose this fight daily. I know. I always remember because sadly at any given time that could be us. There are no guarantees how long we have these miracle babies with us and I never lose sight of that. I can simply look at him and dissolve into puddles.

It's surreal this journey. It's a crapshoot. It's eye opening. It's life changing. It's forever, for however long that is. It's something I would never, ever change. I don't believe pax would have the spirit he has had he not had his struggle. Every.single. hlhs baby I know has a spirit that words can't seem to define. They, just get it. They rock it because they fought the fight. They're still fighting the fight. It's like they just know. If even half the world had their spirits, it'd by far be a much better place.

February~the month of hearts and of love. There could not be a better month to group CHD Awareness into.
The month of love and of hearts, broken, fixed, repaired and in heaven to be celebrated, honored and made more aware of today than ever before.

CONGENITAL HEART DEFECTS KILL MORE CHILDREN AND BABIES THAN ALL CHILDHOOD CANCERS COMBINED. LET'S RAISE AWARENESS AND HELP SAVE MORE LIVES FOR THESE AMAZING LITTLE SPIRITS THAT FIGHT MORE EVERY DAY THAN WE WILL OUR WHOLE LIVES.

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So I have this bucket list and it's been there awhile. some things on it, a long while, others fairly recent. But I finally took the plunge and picked a full marathon (26.2) miles and registered. It's the chicago marathon on October 10, 2011. That would be the day after Paxtons second birthday. It was my sign. My motivation to do it. Because on that day two years prior Paxton will have been two days away from undergoing his first open heart surgery at 4 days old. It never leaves me I tell you. The dates never go away. So I figure if not now, when... I am in the best shape of my life and it's always been on my bucket list. I will do it for him. I will get to the breaking point and it will be then that I will turn to him for strength because there is no pain like having your chest cut open, being put on bypass, being left open to allow for swelling with a ventilator down your throat, medically paralyzed for days.

While I don't want the details to be forefront forever, right now they still are. Last year was beyond a whirlwind as I was knee deep in it. There were hundreds of hours and days that I could do nothing, but stand by helpless. What I would have given to take it all away, to release it all somehow. That pain. That pain of not being able to do anything is still so raw and I will be releasing on the streets of Chicago in just over 8 months. Hell to the yah! Thank you paxton for pushing me to my limits. For showing me that I can do things I never thought I could do. My how we have been such inspirations to each other. I know I help him when I simply put him on my chest at night and he wraps his arms around me and falls into a soft, comfy sleep. He would stay there all night if I let him and there will be days that I do.

Bucket list item #2: to write a book.

I have always wanted to, have always been a writer. never found an outlet such as this until we lost our third baby and then found out about Paxton. So many people tell me to compile this. To make it into a book to help others. That it's real and true and raw. It's not sugar coated. There are days I didn't know how to continue on and I wrote just as it felt. I look back on those today and man if I'm not proud. Man am I glad I told it like it was because it allows me to really, really be on the other side of it all and celebrate.
Whether I ever accomplish this bucket list item is yet to be determined, but if I did, it would be because of Paxton. Unbeknownst to him, he is my strength, my driving force.

The list goes on.... and those I will share with you more in the coming weeks. For now I am working on two of them. I am excited and hopeful. If nothing but to inspire just one other person to do something they never thought they could do or to help someone else trudging this same journey.

Yep, I have found my purpose and while it caught me by complete and utter surprise. While it rocked me to my core. Had me hanging on literally by a thread. It is the most powerful, special, insanely fulfilling purpose I can think of and when I look into those deep blue eyes I know I am home, just like his brothers, they are my home.

It's pretty awesome to think that I helped to make that amazing little man. That little fighter and that's all the purpose I need.

Happy Weekend My Friends!!!

WEAR RED TOMORROW! Do it for blue eyes and all of his bff's!!!!

Love
~J