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.
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:
Communication Breakthroughs: Braille and Sign Language
The Wheelchair
Special Olympics
The work of Dr Wolfensberger
Medical Breakthroughs: The Guthrie Test (infant heel prick test) & Polio Vaccine (just to name two)
5 comments:
Jen this is amazing and I think it is perfect for Blissfully Domestic. If you sent it in and got it published it could get you a world of traffic to this blog which would be wonderful. If you want to do it let m know and I can network it for you. Maybe it is the next step in this serendipitous story! I just knew that you would be active in this at one point. The support will be wonderful.
P.S. It is amazing that you met that woman at Julia's school. I am sure she can share a lot of hope. Hazie is one lucky girl.
What a great idea!!!
I think that this blog is a great idea. As a mom of a special needs child myself, I would love to have more serendipitous moments like yours. Thanks for sharing.
Jen, you are such an amazing Mom! Your family is wonderful and you are so kind to my girls...they love being with you and your family. I am not sure if you are using Signing Time at home with cute little Hazel...but I was on their site and Rachel the creator of Signing Time has a child who was diagnosed with hydrocephalus and a Chiari Malformation. I am attaching this story from Rachel's Blog > Lucy's Story as I was touched and feel it is amazing....
Hope that is ok?
"Our 18 week ultrasound brought unexpected news. Baby Lucy had hydrocephalus… and that was not all. They could not see her cerebellum, it was pulled back into the top of her spinal column - this is called a Chiari Malformation. Though they could not get a clear view of her spine, the doctors were convinced she also had spina bifida. Spina bifida is a birth defect were the spinal column does not close properly -there is almost always some paralysis. We did cry. Aaron didn’t want to go to work. I didn’t want to move - I just kept thinking about Lucy’s exposed spinal cord and imagining that any move I made could cause her to bump it and cause further irreparable damage.
I noticed the feelings were so much like when we had discovered Leah’s deafness. And then we made a choice. We decided that Lucy’s spina bifida would be exactly like Leah’s deafness. We decided nothing was wrong, we just needed to educate ourselves and do all we could to care for Lucy. I got on-line and found fetal surgeons Dr. Bruner and Dr. Tulipan at Vanderbilt University Medical Center in Nashville Tennessee, they were performing fetal surgery for spina bifida. I watched a virtual surgery on-line, where they repaired the fetus’ spine, just as is it is done once a child is born full term, but THIS surgery was occurring at 22-24 weeks gestation. Four weeks later, Lucy and I became the 82nd mother/baby patients having this ground breaking surgery. I was on bed rest for 10 weeks. Lucy was born 8 weeks early.
Lucy's Birthday
Her Chiari Brain Malformation was reversed and Lucy did not have a shunt until age 3!
When Lucy was 9 months old, she was diagnosed with cerebral palsy. At age 2 her neurologist said she was mentally retarded and would never learn to speak nor would she be able to communicate through sign language. They said cerebral palsy did not change. It wouldn’t get better or worse. But we believe in miracles!
Lucy did begin signing when we were creating Signing Time! - My First Signs. She started signing “MORE” and shortly after that she signed “WATER” and then Lucy’s world opened up. First through signs and later through speech. I can’t imagine we would have thought sign language would be the key to Lucy’s success, IF Lucy had been born before Leah. We probably would not have guessed that through her will to communicate, Lucy would develop fine motor skills that professionals deemed impossible for a child with cerebral palsy. How could we have foreseen that the confidence and success Lucy gained through signed communication would enable to later develop speech with her tiny quiet voice, supported by signs for clarification? Now, at age 6, Lucy fully participates in a mainstream first-grade classroom. She uses a manual wheelchair and a power chair. She still signs beautifully and speaks clearly as well.
Leah was the inspiration for “Signing Time!” and Lucy opened my eyes, showing me that sign language is indeed for EVERY child of EVERY ability.
www.signingtime.com
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