Sunday, October 30, 2011

Spina Bifida Awareness: Meet Jeremiah!

Today we share a story about a handsome little fella, named Jeremiah!! Here is what his mom, Hannah has to say about him:

We found out at my 20 week ultrasound that Jeremiah our son had Spina Bifida. Actually, our doctor never said Spina Bifida when he was explaining everything to us. He kept saying myelomenigocele, a term I had never heard before. As we were walking out, it was the nurse who told us the more common name. And that is when I remember first feeling scared. I knew about Spina Bifida. I knew that there is a wide range of abilities and challenges in the SB community. I didn’t know where our son would fall in the spectrum. I hate the unknown.

Jeremiah was born on April 19, 2010. I delivered by C-section, and got to see him for a few precious minutes before they took him through underground tunnels to a connecting Children’s hospital. My husband Chris went with him, and I stayed with my parents in recovery at my hospital. Jeremiah had his initial surgery to close his back just hours after he was born. About six hours after he was born, Chris rolled me in a wheelchair through the tunnels so that I could see Jeremiah. We did that every three hours for three days so that I could feed him and spend time with him. It was such a relief for me to be released from the hospital.

Jeremiah was born in the pike position, with his legs up by his head and his knees hyper extended. He could not lower his legs, and I was concerned that he would not be able to even sit in a wheelchair. Through a series of casts, they were able to lower his legs and bend his knees, and also help to correct some clubbing in his feet.

 Jeremiah has a shunt and has had one shunt revision. He is very healthy! He just tested out of occupational therapy, and he is progressing in physical therapy. He is now 18 months old and he has just started to take some steps. He has done more than I ever thought possible!

When he was first born I remember wondering if I would ever stop equating Jeremiah with Spina Bifida. What I mean is, every time I thought about Jeremiah, I remembered that he had Spina Bifida. I am happy to say that now, Spina Bifida no longer defines him, at least in my mind. He is so much more than SB! He is funny; he’s a tease; he’s a momma’s boy; he’s ornery; he’s a fighter. He loves to pray in sign language and pat the Bible. He loves being outside. He loves to throw rocks and get dirty. He’s just a kid. I can’t imagine our family without him! 
Thank you Hannah for sharing Jeremiah with us!!


Kim said...

He is simply adorable! I also can relate to what you said about not equating him with SB. I'm not sure when we stopped thinking of it all the time, but the day does come when SB takes a back seat, and you just live your life and enjoy your beautiful child for just what he/she is. A lovely child of God. :)