Thursday, January 14, 2010

Quilting Guild and Ds

The San Antonio quilting guild is pretty large. They have hundreds of members and the meetings are really interesting. They have really good quilters and instructors come from all over to teach and the topics are fun. They do a lot of community service including presentations at schools and libraries and making quilts for the hospitals and soldiers. I keep saying 'they'. There is a reason for this.

I used to go regularly, even through my pregnancy with the nerdlet. I went after her birth and it was really the only time I would leave the nerdlet with her daddy alone. It was where most of my quilting customers would come from. I stopped going a few months before I got pregnant with the bear cub. All of a sudden it became inconvenient to make time in my schedule. It happened one Saturday when one of the members gave a little speech during the announcements.

She announced that her baby was born without Down syndrome and she cried telling us how happy she was and how grateful she was for the prayers and how awful her whole pregnancy was thinking that her son was going to have it. I went a few more times after this speech, but I never really felt comfortable around her again. This lady owns one of the quilt shops and I have never been and will never go to her shop. This was before my life was personally affected by having a child with Ds, but I could not seem to get over the fact that she would allow such a diagnosis to make her miserable.

I know that is a normal response to grieve when you have a child diagnosed with Ds. I understand that it is seeing all your dreams for certain things all disappear at once, as opposed to your other children where your dreams for them disappear one by one as they grow and change and show you that they are who they are and not who you dream them to be. I never went through this, but even before the nerdlet, P and I had many discussions about how if our children wanted to be hairdressers or poor struggling musicians or whatever that we would support them in who they were. Maybe that helped. Maybe it helped that it was so hard for P and I to conceive in the first place.

There is a facebook meme that parents of Ds are posting. "My wish for 2010 is that people will understand that DOWN SYNDROME is not a disease; people with DOWN SYNDROME are not looking for a cure but ACCEPTANCE." I do think it is important that people realize that it isn't a disease. People ask if parents would cure their child that has Ds if they could. Would you trade your child for another child if you could? I guess those that abort their children because they have Ds would. Isn't that what they are trying to do? I would certainly have cured the hole in the bear cub's heart, but now it is cured - through surgery. I would help her not have to struggle with learning certain things, when it comes to that. Would I cure the part that makes her smile all the way down to her toes? Would I cure the part that makes her greet everyone with that happy grin? Would I cure the sweetness that causes the ladies at the gym daycare to say she makes them want to have another baby? Would I cure what makes her the person that she fundamentally is? No, I would not exchange my daughter for a different one. I love her the way that she is.


  1. I'm catching up on my reading. I'm right there with you. I cannot fathom not wanting the child you are blessed with. Not for one second.

  2. And that was me, gretchen. couldn't make my lj username work.