Sunday, March 2, 2014

Special needs mom

A friend sent me the above "look inside". I can honestly say it made me cry. This is exactly how it is. It is so beautifully written. It got me thinking about our Noelie. We knew early on in my pregnancy that he was affected by the genetic disorder. We hoped that it would get better but knew, in our hearts, that it wouldn't. Every day was a struggle. Every day was a blessing. At our lowest point, Noelie was having a really hard time with life and the doctors told us we didn't have to "fix" him. We could just make him comfortable. Basically that meant sitting back and waiting for him to die.

That was not an option and I knew we had to fight. I couldn't just give up. Noelie couldn't either. He is a fighter. Every day we push him. We have made it so he can grow and thrive, but he still learning and trying. Every day he practices eating with his mouth. He stands up with assistance. He gets stretches. He gets therapy. He gets medical equipment to help him, and us. We don't stay home because he may be hard to move around. We go everywhere. To the grocery store, restaurants, the lake house to go swimming, parties, church, and over night trips. We love making him laugh. We love introducing him to new things. He will not miss out on life. We will make sure of that. The only thing he will never be able to to is visit the Hover Dam because the huge generators my mess with the shunt in his head.

With everything that we are determined to do with him, I have to remind myself that I am human. There are days (especially when I was at the end of pregnancy #2 and recovering from giving birth) when Noelie didn't get all the therapy, or practice eating, or even getting out of the house. Those days came with such enormous guilt. Even now we have "lazy" days. Days when we cuddle more than stretch, or try new things. I just have to refocus and do better the next day. He will become the best that he can be and we will love him for whatever that ends up being. He paints our world with beautiful colors every day and we can't wait to share that with the world!


  1. As a disabled adult, I have to say that while getting out and doing things and getting in all my self care every day is nice, sometimes? I just want to sit around do nothing. In fact, this week one of my best friends is going to come over and we're going to build a blanket fort in my family room, and sit in it and watch Despicable Me and eat cookies. We're well into our 20's and both homeowners. Sometimes, you just need a down day to relax and unwind, and I'm sure your son appreciates the cuddles and down times as much as you do. So please, don't consider them failing in any way shape, or form. They're recharging, fuel to get through the therapies and errands that fill most of our days.

    Also, I saw your post about the sitting up, and that's awesome! How exciting!

    Signed, a fellow Zebra
    (I found your blog through Love That Max.)

    1. Thank you for the encouraging words. Some days it is nice to just hang out. A blanket fort sounds like a good idea! We may have to do that too.