Thursday, March 1, 2012

Trisomy Awareness Month

The month of March is Trisomy Awareness month.

A trisomy is the presence, within a persons cells of an extra chromosome instead of the standard two strands (hence the "tri" for three!). The most common Trisomy is Trisomy 21 (Downs Syndrome), followed by Trisomy 18 (Edwards Syndrome), and then Trisomy 13 (Patau Syndrome).

These dear babies are often given little or no hope of a life or future, or chance of survival, particularly as you go down the "rarity" scale. In fact, some are never even given a chance at all.

I understand the difficulty of a life with a challenged child. I lived it for 16 months. I had the highs, I had the lows. But the thing is, the Trisomy babies I meet, including my special Mikayla, are very often FIGHTERS. Whether they fight for 1 hour or 65 years, they have a spirit in them, that the rest of the "healthy" world don't often have. They are courageous, and offer so much to a broken world. They bring immense joy, and leave behind a river of tears in their absence. They're special in every sense of the word. And while the road is hard, there is hope... and some soar through their adversity.

And what much of the world DOESN'T realise, is that they're humans. Just like us. They hurt. They laugh. They love. Just like us. And just like us, they are WORTHY.

Every Trisomy child is a gift from God. They come with broken bodies sometimes, but they have whole spirits, just as God created them- and just as God sees them.

Learn about Trisomys. There are more cases out there than you know. There are translocations, Mosaics and Partials. And the presence of other Trisomies. Although rare, they're there. And there are mums who need to have time out sometimes, perhaps a dinner with their husband, or a meal. Sure, they look like they're coping, but that's cos they have to. Don't forget about them. Sometimes it's the small things that can make such a big difference.

Mikayla had FULL Trisomy 18, meaning that EVERY CELL in her body contained a third strand of the 18th chromosome. Yip, in a nutshell, my child had something EXTRA. I reckon that made her EXTRA-ordinary!

Miks when she was about 4/5 months old. I LOVED her goofy smile that she did when we wriggled her legs. Miss that smile like MAD!