First Steps on the Down Syndrome Path

Over the weekend Bryan and I met with the Early Matters Coordinator from the local Down Syndrome Association. She has a son who has Down Syndrome so she has been exactly where we are and understands the emotions we are experiencing. Meeting with her helped calm a lot of my worries and fears.

After we got the diagnosis, I began doing a lot of research. I wanted to know what I could. What are the health risks associated with Down Syndrome? What are the miscarriage/stillbirth rates? How delayed are babies with Down Syndrome typically? How major are the differences going to be between when Alex was born and when Mary is born? Will we need anything special for her? Bryan pointed out that a lot of what I was looking up, while factual, had a very “doom & gloom” feel. I was trying to research using the reputable sites, research the factual and clinical information. The thing about trying to research anything in regard to human beings is that it will be different in each person and I was trying to learn ALL of the possibilities. In my anxiety, it was all I could think to do.

Meeting with the EMC helped a lot. She was able to take all of the information I had and put into a real world point of view. Yes, there are several health issues that can come with Down Syndrome, but most children only have one or two of them. In the several years she has been the EMC, she only knows of one baby that was miscarried or stillborn. There are several reasons a baby may not make it, but Down Syndrome alone is not why. It is usually the additional health issues that can go along with Down Syndrome. The delays are different for each child. Some may hit their milestones on schedule in some areas and be delayed in other areas. Some may be delayed in multiple areas, or overall. It is something we will not know until after Mary is born.

The EMC and I are very similar in how we deal with stress and anxiety. Expect the worst and prepare for the worst so if the worst happens you are ready. However, Bryan deals with it differently. He has a more “I’ll deal with it as it comes” approach. He kept telling me that it won’t be as bad as I am reading. When the EMC told me the same, I think he enjoyed getting to say “I told you so.” While I know he told me the same things she did, it felt different coming from someone who had been there, who was further down the path we were just starting down.

She gave us some great reference material, for us and for our families. She gave us some books from DownSyndromePregnancy.org, one for us and one for our families to read. She also gave us a book for us to read to Alex called “We’ll Paint the Octopus Red” by Stephanie Stuve-Bodeen. Bryan and I have read through it and we both like it. Once we are ready to talk to him about it, we will be using this book to help explain it.

For anyone starting on the journey of learning about Down Syndrome, I HIGHLY recommend reaching out to your local Down Syndrome Association. You can find your local one here.

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