Pat Furlong wrote a wonderful blog posting of which I whole-heartily agree! http://community.parentprojectmd.org/profiles/blogs/words-mean-something DMD/BMD may break our hearts and make us feel like we are suffering, but our sons do not have to be labeled as dying or suffering - none of us are promised tomorrow anyway! So how do we treat our sons, talk to our sons, talk to family and friends, or even strangers who may notice or ask questions. What would I say? How would I react?
I'm a huge believer in letting my son participate in whatever he wants to do and encourage his adventurous nature. There is no huge fuss over the AFO he sleeps with at night. There were no big parties to make the AFO seem fun and interesting. The AFO's and his shoe inserts (orthotics) are just a part of his normal routine. Most everything he does is meant to encourage his independence life, even when there are times when we do help him up and down stairs or hills. But this is a natural part of our instinct now, and it genuinely feels like a special bonding moment for both him and I. We always respect his need and declaration for "I want to do it myself!" So in many ways, it's a matter of fact for me. It's part of our lives and there is nothing I can do right now to change it. So why fuss over it? Why cry over it? Why make him feel any more out of sorts by my actions and reactions? Most of the time, it's just not worth the anguish nor the energy. It's so much easier to just be aware and understand DMD and not make it into a huge, horrific ordeal.
On the other hand, I often contemplate how much do I communicate about my son having DMD to those outside of our family inner circle - the "Need to Know" circle. Most times, it's no one's business but ours- not to be rude, but to just not make any bigger deal of DMD for my son's sake, then it needs to be. He's too young to be really aware of why he has some limitations. He just does not care that he cannot jump as high or run as fast as his friends or his brother, so why bring this to anyone else's attention needless? The answer is I just do my best to not do this. I'll help him through the realization of DMD as the situation presents itself. He's a smart and vivacious child with such imagination and spirit that DMD is absolutely no hindrance to who he is and his wonderful personality. In other words, it does not define him nor define our family.
So why is that I continue to contemplate how much I should communicate about him having DMD? I know that when I hear stories in the news that would cause me to pause, such as the Swine Flu, I want to throw up that force field around him and tell every parent in his preschool that they need to keep their sick kids home which some people will find very offensive. I do not mean any offense, but it amazes me how many parents won't think twice about dosing their child with a fever reducer and send their child off to school. This is not really my point, I digress.
What I mean to understand is how can I or when should I speak to those outside of the "Need to Know" circle? Using the Swine Flu as an example, I almost sent my oldest son's (he does not have DMD) friends' parents to inform me of any possible flu/upper respiratory colds my oldest son's friends have. I did not send the email because I asked myself, do these parents who I don't even really know very well need to know why I need to know this information? Should I really worry about this? I finally decided that I can stick with the "Need to Know" circle because all reports say this is no more detectable than any other variation of the Flu.
I think the best thing I can do for my son is to ensure I keep an eye out for any potential situations where he may be more susceptible and teach him about how he can protect himself. Of course, as a boy there seems to be a natural instinct to wipe his nose on his arm or sleeve ;-) So, I just keep reminding him about using tissues LOL!
In any case, my "method of madness" here comes down to protecting him from the world of "labeling" rather then protecting him from DMD, so that he can have as normal of a life as anyone can expect. By the way, I giggle here because normal is so subjective! Since this seems to be the bottom line, then it should be easy to come to the conclusion that anyone outside of the "Need to Know" circle just does not really need to know. I can monitor situations like the Swine Flu without shouting to the world why I need to know.
How do some of you feel or handle communications about your child's DMD challenges? I'm curious ...