My name is Jen and I am the lucky mom of four amazing daughters. My youngest, Hazel, was born in 2007 with severe spina bifida (T6), hence this blog. She is so sweet and amazing and miraculous. She is 14 months old now, she's had 4 surgeries and spent close to 70 nights in the hospital. This story is just one example of the little moments God has given me to help me get better at being her mom.
Wednesday night I went to Special Ed Parents Night at my daughter Julia's school. She's a 3rd grader and is in a speech class at school. She has an IEP and is classified as language delayed. I go to her IEP review each year and talk to her about her class from time to time but that's about it as far as how much it effects our lives. Anyway-she really wanted me to go to this Parent's Night so I agreed. When I got there I realized it was a handful of 20 minute classes with all kinds of different topics relating to kids with special needs. I didn't really feel that any of the titles fit well with what Julia was struggling with but I picked one and went in. The teacher and I were the only ones in there and we sat in silence for a few minutes waiting to see who else might show up. After about 10 minutes it was clear that we were the only ones coming so we just started to chat. I told her about Julia's 'struggles' and she didn't seem to have much to say about it.
As it turned out she was the coordinator from the
Utah Parent Center. She told me a bit about that and I asked if it was just for kids with learning disabilities or for physical disabilities too. She said both and then mentioned that all the people that work there have to have a child with a disability. "My son has spina bifida." she said. I was stunned. I know it sounds silly but I still haven't been in touch with anyone who is living with SB. All at once I was excited, scared, intimidated, thrilled.
She told me all about her son. He's 20, has had 38 surgeries and has a low lesion. He walks with braces and a bit of a limp but does really well. He just returned from his first jaunt away from home as a real independent grown up. I asked her a million questions and then we both started to talk about how lucky we are have had these babies in this day and age with the medical help there is available now.
This wonderful lady served as the president of the Spina Bifida Association of Utah for many years and was a front runner for a lot of the amazing programs and benefits that families and kids with SB now enjoy. She told me about one of the first national meetings that she went to. There were many adults there that were born with SB in a time when there wasn't much that could be done to help them. They were bent and very crippled and suffered many, many health problems. We both sang the praises of the current medical professionals and early intervention programs that are now in place.
A few days later I opened my
EP magazine and saw an article titled The 7
Wonders of the World of Disabilities
by Jan Carter Hollingsworth and Laura Apel. It is an amazing article. I've been scouring the internet looking for someone that's published it online and the best I could do was
this. It is really worth looking over. I'll give a brief synopsis of it here but it really should be read in it's fullness.
Anyway-the 7 Wonders article, my serendipitous run in at Parent's Night and Thanksgiving all got me thinking about how much I have to be grateful for. How much I owe to the people that went before me to allow me the privileges I enjoy now. Not just in relation to our country and our freedoms but with innovations and adaptations that open up the world for people with disabilities.
Here are the 7 wonders:
The Wheelchair
Special Olympics
Medical Breakthroughs:
The Guthrie Test (infant heel prick test) & Polio Vaccine (just to name two)
