Wednesday, July 8, 2009

What would you say?

What would you say to a woman who has just found out she is carrying a baby with Down syndrome and is torn about what to do?

This question was posed on the Ds New Mama blog and got me thinking.

What I think I would first do it let that woman express whatever she was feeling at that moment: fear, frustration, anger, loss, etc. It’s all valid and I wouldn’t want her to feel guilty or afraid that I was going to be judgmental. Crying, yelling, or just being quiet are all things that I went through myself upon learning of my daughter’s diagnosis.

When she was ready, I’d talk, following her lead. I’d answer any and all questions that I could. I’d direct her to where she could find answers that I didn’t have. I’d advise her to write down anything else that came to her mind so that she could seek enough clarity to make a well-informed decision.

I’d offer to have her meet my daughter, if that were feasible, so that she could see that she is a child, first and foremost, not overcome by her diagnosis.

I’d tell her about local services, if it made sense to do so.

I’d hug her if I could.

I’d tell her the truth about how there will be highs and lows if she were to continue her pregnancy, just as would be the case with any child, and that her idea of “normal” and “perfect” would change.

I wouldn’t fill her head with platitudes. I’d tell her that everyday people have babies that require a little more than others and that she, too, could do it.

I’d bash other myths for her as well, while attempting not to overwhelm her with information.

I’d advise her to stay off of the Internet unless she knew exactly what she was reading since there is so much outdated information out there falsely presenting itself as accurate.

I’d suggest blogs that gave a true-world example of what her life could be like with a child with Ds.

I’d tell her that there are so many people in this world who make it their business to advocate for children like hers, to ensure that child would receive the best possible opportunity to reach his/her full potential. One day, she may be one of those people.

I would tell her that opportunities for people with Ds are growing steadily and her child can be provided with the tools to excel. Each generation has the chance to improve upon the successes of the past.

I'd make sure she knew of the extended Ds community that would welcome her and her baby into its fold with open arms.

I’d offer her any of the books I had with Ds as a subject matter, if she wanted to read them. (I'd warn her about the scary ones.)

I’d let her know that I would remain available to support her, if that's what she wanted or needed.

What I hope I wouldn't do is force my views on her. I would simply do my best to give her the most well-rounded view that I could. You can get "doom and gloom" regarding Ds just about anywhere. It's the real talk that is hard to reveal and that's what I would try to provide.


ds.mama said...

This is a great post Chrystal. It is all things I would have wanted to know/hear.

datri said...

That's wonderful!

Jessica said...

Very well said.

Wendy P said...

Chrystal - I wish someone would have said all of that to me.

Hector and Jennifer Varanini Sanchez said... are so right on with this post. Absolutely the perfect approach and I hope/wish I can and will be this type of support for someone someday. You are awesome!