DS 24/7 All Day All Night

My daughter has Down Syndrome but I can’t think about Down Syndrome all the time. She is my child. She happens to have Down Syndrome.

Sure, I love to read books about people that have a child or a relative with DS. Yes I love to see a movie or TV program featuring DS. I love reading all the blog entries contributed by people that have been touched by somebody with DS. I get a little thrill when I bump into people with DS that I haven’t met before.

This is the extent of my basic interest in DS. I have met others who have been to every conference about anything remotely to do with DS. They have traveled all over the country to be aware of all the latest reasearch and therapies. They are familiar with every specialist, every obscure therapy, every far out nutritional supplement/holistic treatment that may help DS. I can appreciate that it is very good to be aware of all that is out there, but frankly it EXHAUSTS me. Is this very terrible? I get so anxious when another parent will volunteer a list of vitamins and specialists that their child uses. I feel so clueless about all the latest research. Quite frankly I don’t follow the research that closely. I am sure if there is some wild breakthrough I will somehow hear about such a remarkable discovery eventually. Is it so very pessimistic of me to believe that there really will be no major life altering discovery about DS in the near future? Or am I just realistic? It is what it is I think.

I am just wondering how many others out there are thinking about these things in the same way that I am?

I basically trust that my daughter was born at the right time to benefit from all the programs that are out there. I am so grateful to the parents that came before me that helped get the whole early intervention programs and educational services in place. I whole heartedly trust the recommendations I get from my daughter’s teachers and therapists. I never feel the pressure to research every single treatment out there. Likewise I go to a general pediatrician for my daughter. I am an RN and I do read up on some of the recommendations for children with DS and my group of pediatiricians works along with me. I feel that I am helping the general medical community be more aware of the DS population. Why should she need a specialist? Sure we see a cardiologist and endocrinologist as needed, but for basic medical care I feel completely confident with a general pediatrician as opposed to one that specialized in the developmentally disabled. (Ofcourse it does help that I have a medical background. Even so, my group of pediatricians are wonderful and are pretty much on the ball.) I have never considered supplements and alternative treatments. I don’t believe in them. I think that is for people that want to waste money on some magic snake oil. I can understand how they may be seduced into hoping that there is some magic cure, but I for one I am disgusted by all that nonsense.

Well I have rambled enough. I just wanted to say that I think about DS quite a bit, but I refuse to obsess over it 24/7. I don’t think it is healthy. I do however love reading all the blogs about people’s personal interactions with people with DS. I can’t get enough of that sort of stuff. I guess everyone has their own way of coping. I guess I shouldn’t be that judgemental of a parent that is feeding their kid noni juice and  fish oil supplements and dashing across the country for the latest research conference. What are your thoughts on this readers out there? I am curious to know.