Categories
Pinwheels

For Jooniper

Try as I might, when Avery was a newborn I couldn’t imagine my life with him. All I could see was sadness and heartache. Sometimes, just looking at him would make me cry.

Almost four years have passed. I wish I could reach back to that new mother. I’d tell her the things that took me a long time to learn, so she’d have them in her heart right from the beginning.

I’d tell her that its okay to be scared, and to feel sad and lonely. You’d be surprised how many other mothers feel the same. The mothers who struggle the most early-on become the strongest. Their resolve is like steel forged in fire.

If you don’t feel like you think you should feel, fake it. Sometimes going through the motions is good enough. Soon, the motions become habit. After a while, the habit becomes real. It’s a place to begin.

Doctors do not always know what is best for your child, or your family. You know more than you think you know.

Your baby will grow into a whole, unique, complete person. Different doesn’t mean broken.

Having a baby, or child, or person with Down syndrome in your life means it will be full of surprises. If you are a person who doesn’t like surprises, you will learn to appreciate them.

The love you feel for your baby will be one of those surprises. Your understanding of it will appear when you least expect it, like sunlight breaking through the clouds.

The love you get back will surprise you even more. It is the gift so many of us talk about, the silver lining. It is pure, like the love of any child, and unchanging. You may not be able to imagine it just yet, but it is there.

It will wait for you until you are ready to accept it. And as with all good gifts, the only thing you have to do is say yes.

Categories
Down syndrome

China Medical creates two new diagnostic reagents

and will introduce them in early 2007. The reagents are designed to measure “the free beta subunit of human Chorionic Gonadotrophin (“Free hCGβ”) and Pregnancy Associated Plasma Protein A (“PAPP-A”), respectively, in maternal serum,” which are markers of Down syndrome. To read the press release from the company, go here.

I have mixed feelings about this news. I understand that the research is often market-driven, meaning that as long as consumers are interested in these sorts of tests, there will be more of them developed. But what I’d like to see is a commensurate development of support systems for parents who receive these early diagnoses.

Categories
Down syndrome

The Teachings of Jon,

an hour-long documentary by Jennifer Owensby about her family’s life with her brother Jon, who has Down syndrome, will air a second time on Mediacom cable channel 9 at 9 pm tonight. The documentary appeared on PBS earlier in the year and broke ratings records in several markets. For more information about the film, go here.

Categories
Down syndrome

A nurse’s refusal

Focus on the Family, a prolife Christian organization, reports the story of a nurse who, because of her religious beliefs, refused to assist in the abortion of a 22-week fetus with Down syndrome, which you can read about here.

The article doesn’t mention the name of the Chicago hospital where the nurse worked, and I can’t find mention of this story in other news. What I find interesting is that the law supports the fact that the nurse has rights in this situation, and can not be required to participate in procedures she finds objectionable for personal reasons.

Categories
Pinwheels

Happy new year, ASL-style

I remember being a new mom to Avery and watching the second Signing Times video, “Playtime Signs.” At the end, there is an original song by Rachel Coleman. I used to watch the show for myself, just so I could listen to the song, called “The Good.” It brought tears to my eyes, and became a sort-of anthem for my life, then.

The song can be heard here. Or go here to see Rachel demonstrating the signs for “Merry Christmas” and “Happy New Year.”

Categories
Pinwheels

Great news for Gifts…

a collection of writing by more than sixty moms, subtitled, “How Children with Down Syndrome Have Enriched Our Lives.” Editor Kathryn Lynard Soper has signed a contract for its publication with Woodbine House. The book is scheduled for release in early summer, 2007. For a preview, go here.

Categories
Writing

The maternal is political,

and Shari MacDonald Strong’s book project of the same name has a call for submissions here.

If, like me, you’ve found yourself acting as an advocate for your child or children and are interested in writing about the experience, get your submission in before spring, 2007

Categories
Pinwheels

Gift ideas for special needs children

Blogger Dream Mom has posted a list of the best toys she and her Dear Son have received over the years (her son is now 15, but the suggestions are still very relevant), which you can see here.