Moodle

I know I am not the only person who has a child who is “different”. I hate using that word, but it’s the only way to put it. I’m talking not just about physical differences, but AD/HD, learning disabilities, etc. There are so many of you out there, how is it that often we all feel alone?

My daughter has a medical condition that is physically based, but is invisible to the naked eye. However, it will always affect her, and typically is degenerative in nature. She is a happy, playful, beautiful girl. Caring, compassionate, and very aware of how her actions effect others. But she also has these medical problems that for her are a part of life. She seems to accept that (at least for now) but I still struggle. I still have this burning desire to fix this for her, even though I know I can’t. It’s so hard to look at a child you love so much and know you can’t fix a problem that effects their quality of life. Children are so innocent, pure. They don’t deserve all of these complications, and yet they are abundant in many forms.

I found out yesterday we might be facing surgery for GERD in the next few months for her. On top of surgery being scary to anyone, I am worried about it’s effectiveness in children (it’s not going to last, we know that, but we don’t know how long it will last since she still has so much growing to do) and then I also am worried about her other condition which could very well affect how well her body heals and it could possibly mean that the surgical procedure wouldn’t last as long as a “normal” childs would too. It’s scary, and I hate it. We have one last medication adjustment we are trying now, but then our options are out. We left the appointment yesterday with a “start your research so you can be ready to meet the surgical team if it doesn’t work in a couple of weeks”. The reality has set in.

My biggest fear? It’s the same as all of you who have a child with any special needs. It’s that I won’t make a good choice, or do a good enough job, and she’ll have to live with the consequences for the rest of her life. Logically I know that I can only do the best I can, and as long as I continue to research and question and be involved in her medical care I shouldn’t question myself. But the fact of the matter is, that’s easier said than done. Like all of you, I love my children (and husband) to pieces. I want to do any and everything possible to give them good lives. But I can’t fix it all, and that is hard to accept.

To those of you with children who are “different” know you are not alone. There are people out there who understand what you are going through and the Internet is a great way to connect with them. If you have a child with some kind of special needs, do a search on yahoogroups for a mailing list supporting that condition. There are tons of them out there and they are a great way to connect with other people in the same boat as you. Give it a shot - it is one of the best therapies for me and might be for you too!