Tuesday, January 31, 2012

hospitals..../stream of consciousness

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

Thursday, January 26, 2012

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.

*******


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

***********


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,
~j


Sunday, January 8, 2012

morning ramblings of a heart mama

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.

Wednesday, January 4, 2012

A Belated Birthday Letter

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....

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