We are in one of the most trying seasons of our life right now. Rett Syndrome is hard. Not giving Claire something for it after seeing the shots help is beyond heart breaking. I have friends all over that are struggling, living with Rett Syndrome the best that they can. They keep going each day, hoping that the day comes that something helps. For us that day has come and gone and it looks to return September 2015 when we complete the trial.
People see our struggle and it is hard to know how to help. You can’t carry somebody’s grief for them. I have to cry my own tears. I like to cook so meals aren’t super practical either. People often say that they wish they could help and I don’t have a way for them to jump in.
Now I do.
I have a very practical way for you to directly encourage me, the other families in the trial and the rest of us in Rettland. Would you donate $10 for a NOT SPEAKING kit and take 1 hour and go be awesome and make a difference. I’ve been talking about this for a bit, trying to get these kits into people’s hands before October (Rett Syndrome awareness month) Several have been ordered by strangers, people across the country that I have no tie to and that is amazing and encouraging. Of all of the people I know, 4 people that do not have a child with Rett Syndrome have ordered, 3 of those are people I haven’t seen in years.
It would encourage me deeply to have friends NOT SPEAKING for us this October. If you’ve been wanting to help us out, this would be an incredible way.
To order your NOT SPEAKING kit go to http://rettland.org/notspeaking/