Tuesday, April 12, 2011

Special Needs Glasses

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!

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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.




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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...


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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

2 comments:

Gretchen said...

It is good to hear from you! The boys are getting huge!!! And you are so right about those glasses girl!

Neha said...

Such lovely pictures to start my day (It's 10.00 am in India). Love the one with your father and sister. And Paxton in the Superman tee is too cute!

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