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....

1 comment:

Amy Bennett said...

Ahhhh this is SO beautiful. So eloquently expresses what's the depths of the soul of every heart mom. Thank you.

Happy Birthday Pax!!!

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