Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, April 10, 2010

Random thoughts from the past week

I know my blog has been seriously neglected this past week. I have A LOT to say, believe me, but some of it has to wait for a few days. Partly so that I can write about it without sobbing a huge puddle of tears, and partly because it just has to be that way for reasons I can't explain right now.

Yes, we have posted many pictures of smiling, happy children on the CTR blog. And for every smiling child we posted, there are two or three who are not. There are 200+ orphans in the facility we visited, but we only met about 50. The rest were at various preschools or special needs kindergartens. That's a good thing...I think, that they are out and about. I'll just say there are still plenty of mysteries, and I'll leave it at that.

But, in all of those faces, there is one little girl...



This child..."M"..crawled right into my lap, and my heart. She has Apert syndrome, and is typical with children who have A.S. her fingers are fused. She has had one surgery to release one finger, but will need several more. She let us take a picture of her hands.


She is only talking a small amount, but nobody is really sure why. But it is NOT for lack of WANTING to communicate! "M" is amazing at getting her point across! And she understands EVERYTHING that is said to her, following directions and trying her best to fit in. Here, she listens carefully as her caregivers tell her what I'm saying, "You're so beautiful!"



She then, very carefully, used the ends of her fused hands to tuck her short hair behind her ears, and gave me this very self-satisified grin.


You can't tell in these pictures, but at 10 years old, "M" is the size of your average 4 or 5 year old. This is not typical of Apert syndrome, but IS typical of a child living in an institutional setting and suffering the effects of social neglect. The caregivers in this facility try their best. But M is in a situation where there is one caregiver for every 12-15 children. When she goes to bed at night, there is nobody to tuck her in. I think of Angela, and how every night there is someone to read her a chapter of her latest favorite book, (about crocodiles!) or to sing her favorite song, (Somewhere Over the Rainbow). "M" doesn't have that. She puts herself to bed, covers herself up, and probably helps the little boy who sleeps less than a foot away in his own bed. Does she wonder, when she goes to sleep at night, if her mom or dad are going to come for her one day? I wonder if anyone has EVER sung to her at night as she drifted off to sleep?

Her smile- and her sweet spirit- have haunted my dreams every night since.




3 comments:

Molly said...

There's always a couple that snag my heart and keep me up at night. Bless you for loving on M. She may not know it, but she will be forever loved in your heart. I pray for her forever family.

Lund7 said...

Keeping you guys in my prayers!

Maybe "M" could be Angela's little sister??!!

Alyssa said...

she is beautiful..all these kids are so beautiful. I wish they didn't have to live like this..ugh..breaks my heart.