Thursday, December 22, 2011

A little American pride right here!


Oh "Masey" how I love youuuuu!


Tuesday, December 20, 2011

Full Up

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.

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.

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!

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

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.

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.

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


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...

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.


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,

Friday, December 2, 2011

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

 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,

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