blog-gfx-joydechdr-1500x670n

The Joy and Ache of the Holidays

I want to join Monica and our trustees and staff in saying how hugely grateful we are at RSRT for support from so many people. From families that spearhead events, to parents and others who do RettGive campaigns, to state and international Rett organizations and those who work so hard to run them, to every donor at every level—thank you for making it possible for RSRT to spur research towards a cure.

As a father, I get overwhelmed with emotions when I think of everyone who is making a difference to my daughter, Eleanor’s, life and to so many other lives. My gratitude feels heightened around the holidays. Maybe that’s because when you have a daughter with Rett, the holidays can be especially hard. My wife and I took Eleanor to a local production of the Nutcracker ballet last weekend. We were very proud of her, as we always are. She sat for over an hour and her eyes lit up at the music and the lights and the dancers. Was she sad? Was she thinking—I wish I could dance like that? I don’t know. She seemed happy for most of the performance, if a little restless. But I know for sure that I felt the ache of sadness. Eleanor is 7, and for the first time this year some of the dancers were her age, or maybe even younger. I’ll admit I felt a hint of jealousy or bitterness too—My daughter deserves to be up there dancing as much as the next girl. Why does she have to have this damn disease?

There’s so much joy in Eleanor and in being her father, and most of the time that supersedes the sadness, fear, and yes, jealousy, that can come with Rett Syndrome. But I did feel these emotions last weekend, and I find that they come out around the holidays more than at other times. I know from talking with fellow parents that I am far from unique—they’ve felt all these feelings too. The holidays are bittersweet for us. We are elated to watch other kids experience the magic of sending Santa their wish list, of opening presents and actually being able to play with them. We do everything we can for our children to participate in holiday experiences, but reality hits hard when their arms tremor too much to hold a present, or when Santa asks what they want for Christmas and gets no response.

For all these reasons, my gratitude is even deeper around the holidays to all who contribute to RSRT and share a vision with us for a future without this disease. You, all RSRT’s supporters, are the agents of change for my daughter and for so many others. I look forward with all my heart and mind to the day when Rett Syndrome can be cured. We will reach that day when the research brings us to life-altering treatments and a cure. We will reach that day when Rett ceases to oppress and constrain our children at all times, including around the holidays. I wouldn’t be doing this job if I weren’t confident about that.

Thank you, and happy holidays to all.

Tim Freeman