What do you think of when you picture the average 2-year old? Running all over, climbing up the cupboards, learning new words every day, snacking on new foods, never-ending energy.
My image of a 2 year old has changed. It has been forever altered by my great-nephew Noah. He has spina bifida, which is an opening in the spinal cord at birth. The opening was surgically repaired the day after he was born. But the ramifications of spina bifida are life-long.
Because of the incomplete development of the spinal cord, Noah is just now learning how to stand and use his feet to walk. His feet are both turned inward, which will have to be fixed by surgery when he is a little older. His leg muscles are just now getting strong enough to support his own weight.
Also because of the spina bifida, he has a shunt to keep fluid from building up in his brain. He has had to have that replaced already once, and there is always the chance that his shunt will suddenly stop working which requires emergency surgery to replace.
A seemingly unrelated issue is in fact another consequence of spina bifida. Noah has had a feeding tube since birth. He has never tasted the sweetness of a strawberry, the sour of lemonade, the creaminess of ice cream. He receives all his nutrition through a tube that pumps milk directly into his stomach.
Over the past several months, Noah has started to throw up his milk. A few weeks ago, Leah (my niece) finally took him in to Children’s Hospital. They kept him in for 5 days to find out what was going on. By the time he was discharged, he was tolerating his milk feedings again. So he came home. Leah has followed to the letter exactly what they were doing.
Now, he has gradually become even worse than when she brought him to the hospital in the first place. Yesterday, he tolerated only one out of five feedings. He is already so small compared to other 2 year olds (he only weighs 23 pounds), and now he is only keeping down about 14 oz. of milk in a day.
Please don’t think that this 2 year old is like the orphan pictures you see on TV ads, all sad and mopey. Noah is the happiest little boy on the block! He laughs and giggles, he plays with his big brother, he loves to play with telephones and TV remotes. It’s just that he can’t keep his food down.
As you pray for me and my family, would you please add Leah and Noah to that list? Leah is more a sister to me than a niece. She has supported and helped me enormously on the journey I am on. And I hope that she could say the same of me. I love her so very much and to see her pain as she travels her journey just breaks my heart. I understand her pain and grief when she shares her deepest emotions with me and I just wish I could fix it all for her.
Instead, I hug her and let her cry on my shoulder. I take late night calls and let her cry in the phone until my sister arrives at her house to take the kids for the night. I brainstorm with her ideas of what she should try next. It all seems like I’m not doing much.
Meet Noah – not your average 2-year old – but awesome just the same!