Living with Down Syndrome

My daughter with down syndrome is only five months old.  I can’t even begin to explain all of the emotions I have felt these past five months, and I can’t even to begin to explain all of the emotions I fear for in the future.

I didn’t know my daughter had down syndrome until I held her, after she had gotten cleaned up, weighed, etc. The shock was unreal. It literally felt like I was having a nightmare. Here I was expecting a normal healthy, and quick labor, and in reality it was a long and complicated with heart breaking news.

Even thought it was so heart breaking to hear she had down syndrome, at first, I did feel very lucky it wasn’t severe. Apparently there are several degrees of down syndrome and at least three different kinds of down syndrome. Most babies that are born with down syndrome, I found, have to have some sort of surgery right after birth. Whether because of the common heart defects that are associated with down syndrome, or stomach issues that are also associated. Luckily my daughter did not have stomach or intestinal issues, however, she did have ASD (Atrial Septum Defect, a little hole in her heart).

I feel incredibly lucky that my daughter is so healthy considering she does have down syndrome. I mean the biggest concern for my daughter when she was released from the hospital, was that she needed oxygen, and not even a lot, barely anything, but the doctor seemed to think it was her ASD, she had that was causing her to need the oxygen. Less than a month after she was released her pulmonary specialist took her off of it. As far as her ASD, we don’t know anything, Her cardiologist seemed pretty confident that it was small enough to close on its own. She is suppose to see him in November, so we will see how that is going.

Sometimes I feel bad for having a daughter with down syndrome, who is so healthy, and she is always surprising her therapists, who say she is right where she is suppose to be, considering she does have down syndrome. Her low muscle tone, seems to be what is holding her back in some areas. Overall I am happy and lucky to have her, down syndrome and all. I just can’t help finding myself wonder and worry about her quality of life. As much as I love her, it always makes me sad to think that she didn’t  ask for this. I just have to hope for the best, and so far, like I have said before isn’t so bad. I am very lucky and blessed!

I read this article, 7 reasons why having a child with special needs makes life better, and reason number six is, “Every Milestone is a Big Party”. That could not be more true! Earlier this month, my daughters therapist was working with her on rolling over. Later that afternoon, my daughter had rolled over all by herself. I was so excited, I sent a text to her therapist and told her! A long with anyone else I wanted to share that with. It is a really good article for those who are interested! You can find it on https://drexelle.com/7-reasons-why-raising-a-special-needs-down-syndrome-child-makes-life-better/

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