Ok…I’m going to be perfectly honest with you guys, there are times that I hate Down Syndrome. Yes, that sounds mean and harsh, but let me explain.
I LOVE every single bit of Jana. I love who she is because of having Down Syndrome and given I choice I wouldn’t change any bit of her. But there are things about Down Syndrome I just really dislike.
- I hate how hard I have to push her and work with her to accomplish things most kids do without thought. Everything seems so much harder for her and I just wish she had a break from that once in a while. I hate that often times when she just wants to play and be a baby, I have to push her to do her therapy. She gets mad and upset at me, but if we don’t do it, she’ll get even more behind! I just wish she had a break. That things could just happen for her naturally like “typical” kids do. I know that this struggle with make her even stronger, but as a parent, we do try to make life easy for our kids as much as possible. The world makes it hard enough on them as it is, why add to it!
- I hate being up with her all night and seeing how exhausted she is, but can’t sleep. Last night alone she only got 2 hours sleep before 5:30 am. That’s not good for her!! That can’t be good for anyone. But she does it. Wide awake and happy…but extremely tired. No matter what I do, I can’t figure out a way to help her sleep better. Even with the sleep study we have scheduled in November, we still have a chance of being in the exact same situation. Even though Jana still is decently happy through the day, the lack of sleep is deeply going to affect her overall development.
- I hate how people ask me about her milestones and then ask, “Is it normal for them to start doing that so late?” First of all, THERE IS NO NORMAL! All kids are different and develop at different times. There are averages, but those are not set in stone. Have you ever had anyone ask you if your “typical” kids were normal? I sure haven’t! Just like each typical child is different, each child with Down Syndrome is different. Down Syndrome does not come in levels or degrees. It just is and it affects each child differently. Jana is exactly where SHE is suppose to be. That’s all that is important to me.
- Lastly, I hate how I don’t know how to dream for her. For each of the big kids, I can picture what they will be as adults. Jojo will graduate from Art school and work at Pixar or Blizzard creating video game art. Mason will go to some crazy IV League school and major in Mathematics or Engineering. I still think he would make the perfect Sports Agent. He loves sport statistics and money…perfect combo! Jaylen will go to culinary school. Get a business degree and open up a bakery where she will hire me. (She tells me that all the time) They will each get married and have kids. Drop them off to us for the weekend so they can get a break 🙂 Its easy to picture it all. But how do I dream for Jana? I can see her grown up, going to school, college maybe, being a beautiful girl. But I don’t know how to dream big for her! I want to see her married, having a career, being independent. However, I’m realistic in knowing, those things just might not happen. Down Syndrome takes that away. Instead of pushing her to be independent and growing up to not need us, we have to somewhat teach her that she will always need help. We will have to help her learn that she might not be able to reach the dreams and goals she has set. But find new goals and dreams that are suited for her. One day I might have to explain to her that its not a good idea for her to have children. That she might not be able to live alone. That there are just some things she will not be able to do. Just thinking about those conversations crushes me! We want our kids to strive to be the very best they can. To reach for the highest star and not give up! To tell a child that their dream just isn’t doable…that feels so harsh!
I’m sorry that this post seems negative. This is suppose to be the place where I open up and share. So this is what’s been on my mind. Down Syndrome has opened an amazing world to us. I wouldn’t change that experience. But having Down Syndrome takes away so much from Jana too.