Monday, October 11, 2010
I think that all OB/GYN & Perinatalogist offices should have a brochure for parents that have just received the DX of Down syndrome in their baby. Not one made up by doctors about "possible" complications or "common disorders" but one made up by actual parents of a child with Down syndrome. I remember when my perinatalogist told me that my son had a 1% chance of having DS (because the he noticed a slight thickening in his neck) going home & researching DS. I looked at so many different websites that had so many negative things. I was just overwhelmed! I am one to prepare for the worst possible scenario so I was just heart broken to think that my child "could" have all of these "possible" complications or "common disorders." I don't remember seeing one positive thing. So I decided not to research any longer. I had prepared myself enough, or so I thought. Once Troy was born, I realized that I knew all about the medical complications but nothing about how day to day life would be. I had let the overwhelming information discourage my research....& I needed to know everything. But as I began the research again, I noticed that I read the same negative material. But this time I knew exactly which of the "possible" complications & "common disorders" that my son had. Now I could focus on those instead of the others. I learned that my son would grow slowly & that his fontanelle (soft spot) would not close as soon as Chancey's did because of the slow growth. Then I learned that his bones would grow a little slower causing his teeth to erupt slower & in an unusual order. Then I found out that most males with DS are sterile...which broke my heart because I want grand kids from all of my kids (but he can always adopt). But none of the material told me to be patient, he'll do everything that typical kids do, it will just take him a few more tries to master the skill. No where did I read that my son would be so determined to do those things that it would amaze me beyond belief. It didn't say that my son would LOVE those that LOVE him in return & that his love would be so pure. I can't recall reading that his infectious smile would melt my heart & that just being near him would fill my soul with such joy. It didn't prepare me for the love & respect that I'd feel for this beautiful boy. He has touched my life in so many ways & has brought so many blessings on me that I resent that doctor for even mentioning the word 'terminate' to me. Now I can't imagine life without Troy. So I wish that I could personally talk to each & every parent that has just received the DS DX. Maybe then the statistics would be different (90% of parents terminate their pregnancy after receiving the news that their baby has DS). Actually, I could just show them my brave little son & he could do the talking for me!