Tuesday, February 10, 2009

Down Syndrome Creed

My face may be different but my feelings the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach and to love
as God in the heavens looks down from above.
To Him I'm no different, His love knows no bounds
It's those here among you in cities and towns
that judge me by standards that man has imparted,
But this family I've chosen will help me get started.
For I'm one of the children so special and few
that came here to learn the same lesson as you.
That love is acceptance, it must come from the heart;
we all have the same purpose, though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do but at my own pace.

-- Unknown

Monday, January 26, 2009

Bad Hair Days

It has been such a wacky winter. First two weeks of snow, and now very cold and dry. Not a typical winter at all and the worst part is what is happening to Suzanne's hair. The cold and dry makes it impossible for her very fine hair to lay flat. It floats around her head in little strands that stick straight out. She looks like a porcupine.


Suzanne has a few tactile issues, meaning that she is picky about how things feel. She doesn't really like finger paints or sticky things, she only wears shoes when she has to because she checks out everything with her toes, and she hates to have anything on her head. No hair ties, barrettes, rubber bands or hats. She'll put the hood of her jacket up only if it's really windy and her neck is cold. This makes keeping her hair neat a real chore. We've tried short hair, but daddy thinks she looks like a boy. We are now growing it out, but now she gets syrup in it on a regular basis. Things really were easier when she was practically bald with that sweet little Mohawk...


Kirk, on the other hand, is going through an earnest phase of hat hair. Grandma Pat got him a Carhartt hat at the Big R (she was appalled that he wanted the brown one) and he wears it every day,which means his hair is a mess at school every day. Uhhhh....

Mom/Della! I want to apologize for all those years of insisting on wearing flowers with plaids and stripes and mismatched colors and forgetting to wash my face before I went to school and all those other things that drove you crazy. Your grandchildren are getting even for you.


I think I'm going to dress up a little today. Yes, I'm just vacuuming and doing laundry, but I clearly need to set a better example. Kirk is probably a lost cause, but there is still hope for Suzanne. In fact, here's a picture of me cleaning the kitchen...

Up With Downs!

You haven't experienced life until you've experienced it Suzanne-style...