Thursday, February 12, 2009

Neural Tube Defect

This post is to organize some thoughts floating around in my head.

I once met an eight-year old girl who has spina bifidia worse than I do. She was fascinated with a demonstration on rivers that I was giving. I had a lot of fun telling her about how I became a scientist and that if she really wanted to do what I do, that she should figure out ways to make it work for her. Her smile has stayed with me for years.

She was a sharp one. She'd make an awesome lab rat with her attention to detail. Independent too. She left her dog at home when she came to museum because she didn't want to deal with him that afternoon. I know she'd make a great Earth scientist. Other than her, I have only met one other person with the same affliction.

In fact most days I forget about the x-rays that finally explained why I had trouble with balance, mobility, and dyslexia. I thought constant pain in my back was normal for my entire life. I actually have to remind myself to not go into the field alone, climb up short outcrops to grab "quick samples" with no safety equipment, or play tackle football with my friends anymore. I'm just grateful for each day I have the ability to walk on my own.

If FH and I were to try and have a child, every OB I've spoken to would have me in for a scheduled c-section at 37 weeks. I cannot have an epidural, so I would be out. I force myself to get up and walk these days. If I was in the same shape now as I was in high school, prior to the diagnostic x-rays, I am pretty sure I'd not be in as much pain. Getting fat has not helped the issue.

When I go back to school for my master's I will have to get a dog to help me in the field. I cannot carry the same amount of equipment as my peers and be able to put in a full, productive day. Apparently in the city of St. Louis, MO I qualify for disabled parking. I will refuse the honor for as long as I am able. I'm one of the luckier ones. And I refuse to forget that.


The miniatures will continue in the next post. Curtains are up, but the furniture is not in yet.


The Carolina Quilter said...

I'm glad you persevere despite your disability. My parents adopted me after my mother had 7 miscarriages and then a child with severe spina bifida who was paralyzed from the waist down and died at 9 months old so I believe that I would not have met my darling husband and had my three children had it not been for her having been born to them. They loved her until she died and then they gave me the gift of a family-at that time and then in my future as well.

Mini Leaps and Bounds

Karen B. said...

How old were you when you were diagnosed? Is there a progression of this disease?

MiniKat said...

I was about 20. There is no progression that I know of. I was born with this defect and it went unnoticed until a random x-ray that happened to be pointed at the affected section of my back. It explained so many random things about my growth and development that made no sense.

Sharon said...

Hm, I think David was diagnosed at birth. He had difficulty with knee lift so his walk appears to be cerebral palsy. He is unable to drive so takes the train to work. The steps are a bit of a challenge but boy can he cook.