Anyone here with congenital disabilities?

franjo · 03-15-2003, 02:26 AM

Hi everyone,

I primarily post on the Spinal Cord Disorders board, but would like to hold some discussion about the experiences of children who grew up with disabilities.

I spent a lot of time at various Shriner's Hospitals while growing up. My memories of those days are filled with every possible human emotion imaginable, some very intense. I just think it would be great to exchange experiences with someone who has gone through something similar.

Thanks!......franjo

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Spina-bifida occulta; Congenital Scoliosis (dextrorotatory); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; various developmental abnormalities of the spine.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989

andreaphilip3 · 05-08-2003, 12:51 PM

hi,

i was born wh cp&went through endless surgies&pt.

franjo · 05-08-2003, 03:21 PM

Hi Andrea!!

I was beginning to wonder if I was the only one in the world with a congenital disability!

It's nice to feel special, but I don't think I'm THAT special!

Thanks for replying to my post. I'm sorry that you've had to have so many surgeries. I hope they were successful ones. I'm scheduled to have a tethered spinal cord release on June 5 (my second). All in all, I've had about 16 surgeries. Not all of them were related to my disability though.

If you are like me, a lot of your childhood was spent counting the little dots on the ceiling tiles, post-op. I can still see those d*%# tiles in my mind!!! I missed most of my 4th grade, but was able to keep up with home tutoring. Shriner's has school in hospital, which made all the difference.

There was a lot of teasing to overcome too. I don't know how old you are, but in the 60's children weren't as politcally correct as, I hope, they are now. Most of my energies were spent trying to be as normal as possible. I would sneak regular shoes to school, put the old clunky orthos and my Milwaukee brace in my locker, then continue through the day until time to go home. Then I would don all the paraphenilia once more and return home....no one the wiser. I was such a rebel!!

Also, back then, at least in my experience, doctors did not seem to think that the young patients needed to be apprised of what was in store for them. I often had to glean information from what I'd overhear, and even then, most of that I didn't really understand. For instance, at age 10 I had my first myleogram. They gave me a sedative injection, whisked me from Shriner's to Barnes hospital in St. Louis for the procedure. No one told me what was happening, and I thought my parents were not aware of what they were going to do to me. I thought I was going to have surgery and my parents didn't even know. So, I fought that shot with everything I had...I was determined to stay awake....I really felt as if I was being kidnapped. I get angry when I think of some of these experiences. No one even bothered to tell me what was going to happen to me! I hope it's different for children today, because when you're a child, and left to your own frightened imagination, the images conjured up are often more frightful than what is actually about to take place. But those images are very real to a scared child. What were they thinking?!??!! GEEEEZ!

I hope this finds you well today. And I do hope you'll post here again. Take Care....

~Teri

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Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 and 57 degrees); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; various developmental abnormalities of the spine.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989

andreaphilip3 · 05-08-2003, 06:46 PM

hi!
a sense of humor, i like it! im sorry bout yr surgeries... good luck wh the upcoming one i had 10.. yuck&yes they were successful&yes i was teased upon being mainstreamed at 71/2(was born in 71&yes i know what u mean about ppl not bein aware. my motto is this: teach awareness at an early age so they can teach their parents!

franjo · 05-09-2003, 01:52 AM

Andrea,

WOW! I just noticed the number of posts you have under your belt. I can see myself someday having that many...I have grown to really value these boards.

I do like your motto. I have a 3 yr. old son who, I believe, will benefit from having a mother with disabilities. Already he is very protective of my cane when other children want to hold it. On the other hand, it's difficult to be everything I'd like to be for him, as a mother. I do have my moments of "Woe is me!" But we deal. And improvise. And modify, modify, modify. He's great PT too!

There is definitely more joy there than woe.

I'm also sure to prepare him for doctor visits, etc. I start telling him two days before an appt. what he can expect to happen, and where I'll be. I don't ever want for him to feel that sense of confusion and abandonment that I went through. I guess that's one good thing that came out of my experience.

On the more positive side, I cherish the experiences I had with the other children while in hospital. It was like one big family, and it was truly heartbreaking to say good-bye and go home. I lived, side by side, with children from all over the world and with a wide range of disabilities, religions, races, and backgrounds. No school could ever match that kind of education. I think of them still, and wonder how and where they are.

I was witness to my best hospital buddy, Melva, take the very first steps of her life at age 13. I'll never forget her beautiful, beaming face...freckles all around.

Anyway, enough rambling. Were most of your surgeries done in NY? My next one will be in Chicago. Great city. But most importantly, I feel like I'll be in great hands. God's hands first, then the surgeon's. Thanks for the good wishes toward my surgery. The older I get, the scardier I get!

Sometimes I wonder if knowledge really IS power.

Hope your day is blessed. Take Care...

~Teri