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Tuesday, May 7, 2013

If I had a super power...

I was talking to a friend the other day and we were saying what super power we would choose if we could have one...I obviously said I would choose the power to heal my son. Monday night Zion gave me yet another reason why I would choose this power over any other ability when we were discussing why he needed to change pajamas. For those of you who don't know, Zion has a gtube (a port used to shoot formula feeds directly into his stomach) by his belly button. Every night we do a formula feed through his gtube while he sleeps to compensate for calories he doesn't consume orally through the day. We also hook him up to a pulse oximeter to regulate his oxygen saturation and heartrate. Long story short, he had on a pair of footed zip up pajamas that he didn't want to take off, and he refused to change into another pair. After I reminded him we wouldn't be able to hook up his gtube and pulse ox to his toe, he began to cry saying "it's not fair I'm the only one who has to do treatments..." Talk about breaking your heart...he is 100% right...it's not fair. But how do you explain to a 4 year old that despite that fact he still has to do all these complicated and uncomfortable things because they make him better and he cannot survive without them? He continued to tell me how he didn't want to have to do treatments anymore and it wasn't fair he always had to do them when no one else did. It literally broke my heart and also brought a whole new level of fear as I realized that not only are we dealing with the physical aspects of SMA but we will also have to face the emotional distress it will put upon him as he is able to comprehend more and more of his condition. In that moment I just wanted to wrap him up in my arms, and with a simple kiss heal his broken body and mend his broken heart. I think of a child scraping their knee and crying for mommy or daddy...as the parent rushes up they sweep the child off their feet, dry their tears, and kiss the "boo boo" to make it all better. Some ailments or injuries are an easy fix for a parent, and the child goes back to normal almost immediately. My heart weighs heavy because Zion faces a difficult journey that no number of kisses can cure...nothing I can do can magically take it all away for him. I won't be able to stop the cruel words of an ignorant bully from being said. I won't be able to cure him so he can run up and down the field playing with the other kids. I won't be able to fix his body as it fails to produce a breath on its own. I don't have that super power...I don't have that fix all kiss. All I have is a pair of loving arms...ready to pick him up and find joy despite the pain. I have legs that can carry him up and down that field running from the other kids. And I have the privilege of hooking him up to the machines that help him make each and every breath. I wouldn't trade anything for Zion. He is my best friend. And in reality I do have a super power. I help create little miracles...wrapped up inside skinny legs, trembling hands, and the most beautiful blue eyes you will ever see. So tonight, I find peace in that, and know that ultimately he is all the super power I will ever need.

Much love,
PH

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