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Tuesday, February 18, 2014

Updates From Holland: A Guest Blog By Colton’s Mom

Back in September 2013 I shared a story with all of you titled “Welcome to Holland” in reference to a very special little boy, close to my heart, but I never shared any details about why I wrote this post… until now.

This little boy is my sisters’ son, and my only nephew. He was born September 1st, 2013 and his name is Colton. Soon after being born he was diagnosed with Wolf–Hirschhorn Syndrome (WHS) and his main challenge so far has been with Hypotonia. Every day is a new day, but from what I have seen he is doing amazingly well considering his original prognosis! He seems to be at the lower end of the spectrum and with all of the help and support he has around him, he will succeed! And I couldn’t be prouder of my little sister; she has also been a trooper through all of this and she is one of the best mommies I have ever known!

So, why am I sharing all of this five months later? Well, soon after I mentioned my idea of having guest bloggers, my sister jumped on the bandwagon and wanted to be heard! And without further ado, here is her first posting!

"How do I do it?"

I have been asked a few times "how do I do it?", and I never quite know how to respond. I normally just smile and reply something along the lines of "because I have to." But once I have time to ponder the question (of course this is after the conversation is over), I always have a great response.

How do I do what? How do I care for my son? How do I handle all the stress of juggling doctors and therapy appointments, remembering to give him all his medication daily, keeping his feeds on schedule, trying my best to never forget anything he needs when we leave the comfort of our home? Or, how do I deal with the looks from strangers when we are out in public and I whip out his feeding tube to feed him? Or maybe they are asking how I will help him with all the insecurities he'll have from being different when he's older?

What is it that they want to know exactly?

The problem is not the question. The problem is that they are asking the wrong person. I do what I have to do because he is my son. I do everything for him because I am his mom. He needs me. He relies on me. I do these things because I love him.

The real question is... how does HE do it? How does he handle all of the pain and stress from his rare syndrome? He is the one taking all the medications; I simply give it to him. He's the one eating from a feed tube; I simply mix the formula for him. He's the one being poked and prodded during doctors’ appointments and surgeries; I simply drive him there and offer to comfort him the best I can. And even when the looks from strangers casting pity or confusion are directed towards him; I can only offer him love and show him that no matter how different a person looks, we are all the same inside!

So my answer is… because he is simply amazing! He is so strong and so brave with great determination for such a little boy. Some days are better than others, but isn't that how it is for everyone? I don't know... how do YOU do it?

By: Colton’s Mom