The year was 1976. It was Christmas time. And it was three weeks prior to my due date. My parents didn't know until my mom was about seven months along that I was even coming in to their lives (she was obese and thought she was gaining more, though she was eating less). At the same time, she also had a tumor that sit next to me in the womb area, making barely any room for me to grow and made it difficult to move (or even breath out the fluids I swallowed).
I came in to the world literally backwards, butt first. As I did, I tore her to the point of her nearly dying from the severe blood loss.
Then it was shown that from my chest wall, I had a collapsed lung and after further inspection, that I had a Tracheal Fistula (my esophagus was basically severed, almost completely).
After stabilization, airlift transport and an eighteen hour surgery, where I "died" four times, I had my lung re-inflated and had the fluid removed. But I was also trached and they had to do the repair along with everything else to my esophagus.
First, it was that I most likely wouldn't live past 24 to 48 hours. Then, the first week. Then the first month. Then six months.
All the while, per the doctors, I would *NEVER* walk independently, talk, feed/drink independently (as in require tube feedings) or have viable pregnancies.
Plus once my parents even fathomed bringing their almost-three-year-old daughter home FOR GOOD in 1980, they were once again met with resistance. They were firmly told that there was NO way that they could sustain me on their own and it was best to place me in an institution to get the level of care THE DOCTORS felt I needed.
Well, I went home with my parents, against Doctor's advice. My in-home nurse was FIRED after the first three weeks of not allowing my own mother to care for HER child in any way. And both my mom and my dad had started me on a path of learning and doing. Walking, talking and eating.
Today, I eat anything I want. And drink anything I want. Of course, thanks to my esophageal tract still being way too narrow and having a "dent", I have at times, trouble swallowing my food without it going the wrong way. Rice and carbonated sodas being the main culprit.
I walk ALL over. Have ran 7-mile races, and plan to run the four-miler (and walk, too!) in September with one of my kids.
And I have three great kids. Each unique in their own way. One like their mom. One like their dad. And one with a mix of the two of us.
Please, I urge you strongly to watch the following video. Yes, this man has had a MUCH harder life than I could ever have had, medically speaking.
Thanks to the UNCONDITIONAL love of his father, his dedication to his son, and the fact that this man NEVER ONCE let the obstacle of severe disabilities his son has hinder the now-grown man from enjoying life to its fullest capacity despite being so severely disabled that he requires a Speak Box and a wheelchair.
Believe me, you will need to get out a handful of tissues, because you WILL cry from the awesomeness of witnessing the powerful pull of love.
Thanks to fellow member Rainey, from the FaceBook group, Abled & Disabled United for Community Change for initially posting the video on the group's wall.
My life and experiences with a child deemed 'disabled' with several mental disorders. Yes, I indeed have a CRAZY life with a "legally papered crazy" kid!
Wednesday, May 18, 2011
Living Life To It's Fullest...No Matter The Disability.
Labels:
awareness,
community,
disability,
disabled,
groups,
handicap,
handicapped,
hope,
medical condition,
parenting,
special needs,
support,
video
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1 comment:
wow...
that's all...
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