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I'm Janice, mom to two sons: one in college and the other a teenager with Down syndrome. I read most of the introductions including the first one which said, "As scary as the words 'Down syndrome' may sound to a pregnant mom, I want everyone to know that the reality of having a child with DS is an amazing & wonderful journey - not the scary diagnosis that it sounds like." I partly agree with that; having a child with Ds can be an amazing and wonderful journey, and it has been for me, however it is a much MORE scary diagnosis than it sounds like. At least that's my take on it. When I found out I might have a child with Ds, I ignored the doctors and refused to have an amniocentesis because I wasn't going to give up my baby for such a silly reason; I knew I would love him just as much if he turned out to have Ds. Ignorance was bliss throughout my pregnancy. Then came his birth and immediate health problems--scary stuff. I was so ignorant about Ds that I didn't know how common serious congenital health problems are in Ds; I just thought our kids' extra chromosome affected their intellect. Well, from all of the stories I've heard since then, we got off easy in the health department--fortunately; but we didn't exactly escape with no health problems. And no one told me that I might spend his first 10 years sleep deprived, never once getting a full night's sleep from the day he was born, or the huge toll that would take on my health. (Fortunately, I finally get to sleep more now that he is older.) No one told me how expensive it would be either. And what about the not-so-medically-based co-morbid conditions our kids can have like ADHD, autism, apraxia, eating disorders, sleep disorders, toileting issues, stubbornness, temper tantrums, wandering.... Of course, anyone can have a kid with autism that doesn't have Ds, but children with Ds are much more likely to have autism than most kids, autism and probably also all of the other issues I mentioned and more that I didn't bother to list. Having a child with Ds is no walk in the park; it takes a lot of effort and provides a lot of heartache. All that said, that stuff no one wants you to hear until after you have decided not to have an abortion, I know I did make the right decision for my life. My son fills my heart with joy; he's a fabulous kid, a fabulous kid with lots and lots of major problems, but.... Well, if you knew him, you would know what I'm talking about. What a charmer! The sweetest boy! And cute! And such a comedian! What enthusiasm! He fills my heart with joy but also with sadness. He has a great life now, but the chance of him having a great life after I'm too old to provide it are, unfortunately, pretty slim. Who's going to take care of him? He won't be taking care of himself. He only has one sibling, one who loves him, but he has his own life to live. My son takes most of my time, but I don't have to make a living; who else will ever be able to devote their life to making a great life for him? I fear no one will. I can try my best to put him in a good situation, but I know that we don't have, the state doesn't have, his brother may never have the kind of money it would take to provide for him in the way he deserves. Worry about his future is always in the back of my mind, but I live day to day and make sure he has lots of wonderful opportunities and experiences. And he and I do really enjoy a fabulous life, for now at least.
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