Sunday, July 28, 2013

The Other Noah

I remember when I was pregnant with Noah and how even then I knew something wasn't quite right. I can't tell you what but I felt it. When he was born we were very excited that we had a little baby boy to love. His two big sisters adored him. But, the struggles for Noah started right away. He was having trouble with sucking and took and hour to drink 2oz. of formula. We spent the first several months of his life eating an hour and sleeping an hour 24 hours a day, just to get enough food in him, even doing that he still wasn't growing much.
 When he was 6 months old he only weighed 9lbs and still had no head control and that's when all the test began. We saw an endocrinologist to find out why Noah wasn't growing. He found nothing........ This was the same time that we started taking Noah to therapy hoping that it would help with Noah's ability to do things. Thinking about it now reminds me how desperate I felt.  In my desperate mind I kept thinking if I worked hard enough with Noah he would be on track by his 1st birthday. He obviously didn't happen but the fight continued to make him stronger.  That then brought on  how guilty I felt for not having the time for our two little girls as much as I would like. They never once complained but I still always wish that things could have been different for them growing up.  Morgan and Emily I'm so sorry if I ever made you feel like you weren't loved and cherished while growing up. All three of my children are my world and I'm so proud of the people they have become.
When Noah was 15 months old he only weighed 12lbs. He still couldn't sit up. This was also when he was diagnosed with Trisomy 8. What a blow that was. I remember riding home from Columbus and
Scott and I didn't say one word to each other. It felt like someone was standing on my chest. It was so hard to even breath. I remember the doctor telling us that Noah was going to be a vegetable for the rest of his life and that we should put him in a institution. I would never do that to my beautiful baby boy. Yes, he may not be able to sit, talk, or even eat on his own but he is far from a vegetable. He has so much personality, you just have to take the time to get to know him.

A month after getting Noah's diagnosis, Scott was diagnosed with testicular cancer. I remember feeling that I couldn't handle one more thing. Sadly I chose to focus just on Noah and block out everything else. I wanted to do everything I could to make Noah stronger. To this day I regret and feel so bad that I wasn't there to support Scott. What a scary time it was for him. So, Scott when you are reading this know that I love you very much and I'm sorry I wasn't there for you the way I should have been.

Speaking of Scott, I'm glad he has stuck by me and feel very blessed to have him in my life. Having a special needs child is tough. Most marriages with special needs children don't last. We have had our ups and downs but, I'm happy to say that we will be married 25 years next April. I think it times for a second honeymoon to celebrate. If only we could afford something like that.......

I love Noah so much that it hurts to consider that there was ever another "Noah" out there that could have been mine. that could have been the easier road in life.  A life where he didn't have to fight every single day to do the most basic of things. Where everything came naturally. Where it all came without all the trips to the doctors and hours of therapy. It kills me to think of the what "ifs". I love the person that he is. I feel most people look at him sitting quietly in his chair, that he understands and feels nothing. 

 He knows more then people give him credit for and if they would just take the time to talk to him, they would get the biggest smile. Guaranteed

1 comment:

Michelle Rastetter said...

I could just copy and paste this to my family - it applies so much! Brent also had cancer, hodgkin's lymphoma, about 6 months after Caden was diagnosed... that time of my life was just one huge blur, but I remember the guilty feelings that I had about leaving him to fend for himself while I was struggling to care for Caden and still have something left for Collin. You hit the nail on the head! I always tell my students at school that kids who have disabilities are way more like them than they are different... they just have to take the time to get to know them!