Thanks is going out to a fellow Special Needs mom, Amy, over on FaceBook, who I have become friends with, and her “push” for me to post the following.
We met in a WONDERFUL group for parents like ourselves who are parents to kids that are disabled. And it’s a locally-based group for our region, but we accept people from outside the Virginia state lines, as well.
The group is called Parents For Progress, or P4P for short. Our kids have ALL different types of disabilities and mental capacity. We sometimes DO disagree, but never get cut-throat.
So without further ado…
Just two summers ago, I learned how to swim/float for the first time. I was 33 years old (now 35)! If I had what I needed to have done BY the time I almost turned 6 or 7 years old, then I would have learned to swim much earlier, among other things.
Sometimes, even all of these years later, I can find myself angry at my mom for disabling me even more and literally taking away my childhood. And I refuse to let my son to think/feel about me, let alone his sisters for doing the same to them.
I love my mom, and always will. But ever since I can remember, I vowed and have kept my word to it, to NEVER be like her, where parenting is concerned. Even after she had died. And to this day, I will have a moment of anger and resentment pop in to my head. Especially around the anniversary of my “official removal” of my trache tube (December 1, 1989… not even two months after my mom died).
Heck, the way I have been told in the past, I was THE reason why my parents never had anymore children after me. She was scared another baby “would turn out to have the same problems”… Um, MY problems were *somewhat* because of her (having a 50 LB tumor sitting next to me in-utero).
I was extremely tiny and lightweight at birth. I was born almost a month early with extreme fluid on my lung (which collapsed from the pressure and weight of the fluid) and a esophageal fistula (a break in my esophagus tract to determine between the airway and the stomach routes). I died on the operating table like 2 to 4 times in the 18-hour repair surgery (after a touchy care-flight ride to another hospital when I was LESS than 24 hours old), which forever changed the appearance of my shoulder blade area on the right side (and left me asymmetrical in the breast area).
From the day of my birth, she basically (at first, I understood being that I was so tiny and helpless, and gravely ill with having NO hope for a chance at life, really) became a “helicopter mom”. Later in my elementary school years, she was STILL so overly protective, that not only did she volunteer, but also was a yard duty person at lunchtime, a lunchroom supervisor, but decided to also become an “assistant” for MY classroom or one near me as to “keep an eye on Missy”… In other words, I had NO break from her. She watched me like a hawk. 24/7. If I did go to a friend’s house, most times, she would constantly check on me in one way or another.
Now, maybe some people, especially fellow parents, like myself, of disabled children, can see it from our kid’s perspective as well when it comes to being either too lenient, too harsh or too overprotective (or even NOT protective enough).
I know all too well the fine line EACH AND EVERY ONE OF US walks on a daily basis with our kids. It’s such a difficult balancing act. But they also thrive on being treated as “just another normal kid”. Even when getting in to trouble.