I share this one because it can’t be stated enough. One thing many of us Special needs moms hear a lot of is, “How bad is the Down Syndrome? Does he have a mild case?” There really is no mild or severe case of Down Syndrome, you have it or you don’t.
I often explain it to people this way, you can’t be “kind of” pregnant, you can’t be “a little” pregnant, it is pretty black and white you either ARE pregnant or you ARE NOT pregnant. However, the way a pregnancy affects each woman is different. Some women sail through pregnancies without so much as a lower backache. Other women hang their head in the commode from the time they first see two lines on the stick and can’t handle the smell of food for 9 months. God created each of us so uniquely that things affect each of us in unique ways.
Cedar has 3 copies of his 21st chromosome and that means that he has Down Syndrome. What I don’t know, and no one but God does, is what he will be like as he grows and ages. I know that we will put everything in place to help him reach his fullest potential, I just have no idea what that potential will be. There are people with Down Syndrome who live independently, who have gone to college, who are movie stars, entrepreneurs, actors, and even a teacher in Brazil. There are also some individuals with Down Syndrome who struggle with basic speech, who are unable to learn math problems and who have loads of health issues throughout life.
The fear for most parents, in the beginning especially, is the unknown. We don’t know what our children with Down Syndrome will be capable of doing, but think about this…we don’t know what any of our children will be capable of. I once had a mom tell me that having a child who had a drug/alcohol problem weighed her mama heart down so much more than did any part of the life of her child with Down Syndrome. There are no guarantees with our children. You could have a child fine one moment who has a horrible accident and becomes paralyzed requiring round the clock care for the rest of their lives, you just never know.
I choose to be optimistic for Cedar’s future. He is showing us that speech may be something he will do well with as we encourage him, yet is gross motor skills are something we have to work very hard on to master milestones. He is his own person and more than anything, he is the tourguide on this adventure, I’m just here to see the world through his eyes.
That is a great analogy! It’s funny, I don’t know how many times I’ve been told, “Well she must have a mild case.” It is well meaning so I try not to take it negatively, but it is difficult to know what to say at that point.
And it is so important for us to see that our little ones with an extra chromosome have strengths and weaknesses like any of our other children, and that we can encourage those gifts they have.
I have heard the same thing, Sheila, that is why I came up with the analogy, you figure someone wouldn’t come up and rub your tummy saying “oh, you are a little pregnant, aren’t you? lol. I think it helps people understand. xoxo