World Down Syndrome Day

My daughter, Erin, on her 18th birthday.

Today (March 21) has been designated as World Down Syndrome Day. I think it's very cool how this date, 3/21, was chosen to represent and promote awareness of Down Syndrome. The medical term for Down Syndrome (that more accurately explains the cause of it) is "Trisomy 21", describing the condition in which a third piece of genetic material attaches itself to the 21st chromosome pair at conception. I have written elsewhere on this blog about how I feel the term "Down Syndrome", though more commonly and immediately understood than "Trisomy 21", also carries with it so much negative stereotype. So I am all for anything that helps to promote a more unprejudiced understanding of exactly what Trisomy 21 is. Celebrating it today is a good place to do that (and yes I said "celebrate", because that's what I do every time I think about how the presence of my oldest daughter in my life has made it so much better!). I love and celebrate the beauty of my daughter every day of the year. But if you are someone whose life hasn't been as personally touched by someone with Down Syndrome, or if you are willing to acknowledge you may have some misconceptions about it, I'm hoping that today, and in years to come, March 21 (3/21) will be a day that jogs your memory to think about, and be thankful for, how our world is a better place because of the people with Down Syndrome who are in it.

As a side note, when my daughter was born with Trisomy 21 over 18 years ago, I think there were a total of FOUR sites on the web that had information about Down Syndrome. Today, a simple google search on "Down Syndrome" returns over 22 million hits!! I am thankful for all the excellent information that is out there today about Down Syndrome, including the many positive testimonials and other personal stories from family and friends whose lives have been touched by a person with Down Syndrome.

If you haven't yet, please take the time today to learn a little more about Trisomy 21. There is a whole website dedicated to World Down Syndrome Awareness Day, and that would be a good place to start.

My Daughter, Now A Willing Blood "Donor"

One of the medical concerns that can accompany Down Syndrome is problems with the thyroid gland. In our daughter's case, early blood tests revealed a slight hypothyroidism, and so she is on a daily thyroid supplement. As part of continuing to monitor correct dosage, twice yearly blood tests were required. This is where things got really interesting.

Image courtesy m_bartosch / FreeDigitalPhotos.net

Like many people (and kids especially), our daughter did NOT like being poked with a needle to draw blood. I have so many memories of having to wrap her in a sort of make-shift body restraint, and even then, needing 1 or 2 additional nurses to keep her still enough in order to find the vein and get the blood. All the while, Erin screaming blue murder. I recall one particular incident when, after getting her back to the car, I noticed hundreds of tiny red dots on her skin around her neck and face, the micro blood vessels in her skin having ruptured from the intense straining she did in trying to escape the scary procedure.

Over the years she has gradually become more used to, and more co-operative with, the process of having a blood test. Progress in this came to it's ultimate culmination last week when I took her for a blood test at a local clinic/lab. After presenting the receptionist with her health card and requisition form, my daughter was instructed to go to the back room and have a seat in one of the chairs. I instinctively got up to walk back with her when a crazy idea entered my mind. I quickly asked Erin if she wanted me to come, or if she wanted to go by herself. She raised a hand to stop my advance and clearly said, "By myself."

I sat in the waiting room and listened to the nurse talk to Erin and walk her though a procedure she already knew all too well. A minute later Erin came out of the room with a small cotton ball taped to her arm, and wearing one of the biggest grins she's ever had. I was immensely proud of her. To think how far she has come; no more threatening, no more coaxing, no more restraining. My little girl has grown up and has faced one of her biggest fears head on, and come through with pride on the other side. This special girl never ceases to amaze me.