Blog Hop: My Disability Connection

This weeks Wednesday Blog Hop is :Tell me more about your connection to disability.

My connection to disability started when I met my friend Ashley, when I was around 12 or 13 years old.  Ashley's sister, Tracey, had a genetic disorder called Prader-Willi Syndrome.  Tracey was only a couple of years older than us.  Her favorite activities were sticker books, coloring, baby dolls, playing card games, and eating at TCBY.  She loved going to church, and she loved our Pastor.  Sometimes she loved the pastor a little too much, and Ashley and I would have to convince her not to tell off the pastor's wife, because, well, that just wouldn't be nice.  Tracey had a boyfriend and many people that loved her.  And she was happy.  Along with Prader-Willi came her biggest struggle: eating.  You see, Tracey couldn't just eat a meal and feel satisfied.  She was always hungry.  I think you would really have to witness it to understand, but the best way to describe would be to compare it to what a crack addict would do to get their fix.  Tracey's mom had to keep the pantry locked at all times, and they had a pad lock on the refrigerator, because, like I said, she would never be satisfied.  For the most part, Tracey was child-like, she had physical limitations from her obesity, and along with that, she had health issues.  During my teen years, when I spent a lot of time with the family, I remember health concerns here and there that would come up:  sleep apnea and some hospital stays here and there.  But for the most part, Tracey led a very normal life.  She went to school, did things with her family, drove her sister nuts, went to church and all of our soccer games.  She played card games with Justus, who is now my step-son.  By the time I got to college, however, her health was not doing as well, and it was harder for her to get around.  Eventually, she could no longer walk due to all of the weight that her tiny frame was carrying, and she was confined to a bed.  At Christmas time, my best friend's sister's husband, who is also now my step-son's step-dad (ok, try to figure that out.  I dare you).  Anyway, so he dressed up like Santa, because Tracey loved Santa Claus, and he gave her presents and just sat and talked with her.  She smiled from ear to ear when she was with Santa.  At the time, I was pregnant with Madison, but this was a matter that held a bit of contention.  Because Tracey loved Brad.  Brad spent a lot of time with Tracey, hanging out and talking with her.  Then, when I came home from college on break, I was taking her "Brother Brad" time, and she wasn't happy about it.  So when I told Tracey that I had a baby in my belly, I believe her answer was, "No! Shut up, Tricia."  But the way she said my name sounded more like "sissy".  It wasn't long after that, that she would pass away from the complications of her health issues.

I have no doubts that those last years of Tracey's life were hard on her family and her, as she was sick.  But I also know that whenever we talk about Tracey, we never talk about the times when she was sick or in the hospital.  We talk about how she loved Santa.  We talk about the time that she colored on Ashley's face with a permanent black marker while she was sleeping, because she had been mean to her earlier that day or walking down to the corner to get a snowball together, or the way she could put together a 1,000 piece puzzle upside down without even looking at the picture.  These were the things that mattered.  These were the things we loved.

So I guess I have had a unique experience that many people in my situation have not had.  I learned a lot from Tracey.  I learned that someone with a disability can be loved by many.  They can lead happy, fulfilling lives.  When I found out Kamdyn has Down syndrome, most of these lessons were still buried deep within me, and it took a while for them to come out.  But now, I have no doubts that God led us all together, because He knew all along that I was Kamdyn's Mommy.

If the world of disability were a course, my time with Tracey would be Disability 101.


Now, for anyone who doesn't follow here regularly, I have a 2 year old daughter.

Kamdyn Kristy

And on top of being energetic, funny, spunky, adorable, and sweet.

She has Down syndrome.

Happy Blog Hopping