When I first started realizing that something was seriously up with my body and wasn't going away, I was sooooo relieved and thankful that it was happening to me and not one of my kids. It is something I told myself on a regular basis to stay positive.
However, my particular type of dystonia is genetic. What? Oh, man, that sent me into quite a bit of despair for quite awhile. Do I want my kids to go through any of this? No way. It has caused me to be fearful, anxious, worried, etc...
Is any of my worrying or being fearful for them helping them? Absolutely not.
What has happened is my focus has changed from simply trying to get from day to day with a slumped over weak manner about myself to -- wait a minute! No, I am not going to just take this day by day to wait and see what will happen. My focus now is going to be on fundraising and raising awareness so that if my kids, or anyone elses kids, do have to face this frustrating disorder, maybe in some way I can help to make it easier.
I am definately open to hearing any and all suggestions or thoughts anyone who happens to stumble across this blog may have.
I absolutely love, love, love this time of year. Hope all is well with you.
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Hey Debbie,
ReplyDeleteWe have ice and snow, yuck! Just a thought, what about raising money for the Dystonia Coalition? My husband is running the NJ Marathon in May and we're looking into how we can raise money...to be sent to the coalition. The cure is what we need and that's why the research in that area is most important. Waiting for the coalition's response on that. Hugs, Sue
Hi Sue,
ReplyDeleteIce and snow! That sounds pretty but cold. Yes, a cure is exactly where I want any money raised to go also. I agree, research is definately the most important. It is so nice your husband is running the marathon. I hope you are having a great day!