October

I like to say that I hate October but the truth of the matter is that I just hate Rett Syndrome, a lot. October is Rett Syndrome awareness month. It is also the month that we received our diagnosis and the month that we celebrate Claire’s birthday, which is more complicated than it sounds. I want to skip ahead to November. I love when we all focus on what we are Thankful for. I get to spread love around with the jewels I canned over the summer, eat pumpkin pie for breakfast and not stress about the IEP. If I could bury my head and plug my hears for the month of October I would…but I can’t. Recently Chloe has become her sisters advocate. It’s close but I might say she wants a cure more than I do, and that’s a lot. Chloe tells everyone how we need money to make a medicine so that all the girls with Rett Syndrome can talk. She talks often about our upcoming journey to Oakland and how she plans to change the world. As she goes on and on and on about handsthis, Claire sits, grinning, so so proud of her sister. How can I not get behind that? So, awareness month, here we go! I am going to try to post a little bit each day, a face that is here in Rettland with us, something that makes it easier, something that makes it harder. The fact of the matter is that Rettland can be very isolating, so I will use my tiny voice here, to remind myself and everyone out there that we are not alone in this.

4 thoughts on “October

  1. Janie Beaumont says:

    You are never alone in this, we are fighting very similar struggles here on the other side of the pond, always thinking of you guys… sending love this month……cant wait to see you next year xoxo

    1. I remember when Claire was younger and can imagine that you aren’t just kicking your heels up and enjoying fall. So thankful to not be alone and can’t wait to see you, big hugs to you all, sending all our love as we fight this together.

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