As I’ve enjoyed reading peoples goals and resolutions I wondered why it’s not something that I have done. Then I remembered that for about 7 years crazy storms had been blowing through our life. During that time, when I was sick, when we were in the process of figuring out what was going on with Claire, when we watched her slip away, it was all I could do to catch a breath between waves and being sucked back under in the current. It didn’t feel like there was a lot of choice even though I can look back and see that the choice was just to not give up. The winds have subsided for now and I’ve got my feet on some solid ground so I can think it through a little more. I can look out over the coming weeks and months and see some of what’s ahead. As I do there is one word that keeps sticking with me, my word for this year will be: unless.

It started with one of my favorite lines from Dr. Suess’ The Lorax “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not” It very clearly pertains to life here in Rettland with regard to research, treatment, services and so on. The only reason that we have come so far so quickly is because there are a lot of you out there, working together who care a whole awful lot. For me, unless is bigger than that. Bigger than just starting a foundation to help with one little problem that I see. It’s a choice. It’s a series of choices each day. I can get overwhelmed unless I choose to look outside my circumstances. I get down and I can stay there unless I choose to look around and be thankful for what I do have. Unless reminds me that there are options, that I can look for another way. Claire cannot speak unless she uses her eyes. I cannot make it unless I lean in on my faith and my friends. Rett Syndrome could ruin the life I had planned unless I surrender what I want for something better, more vulnerable, honest, beautiful and awesome than anything I could have ever dreamed of.


Do you have a goal this year? A resolution? A word? I’d love to hear. If you are just catching your breath, trying to not be pulled under and can’t fathom adding one more thing to think about, hang on. The storm will subside. You can do this.

5 thoughts on “Unless

  1. Your last paragraph describes me completely at the moment – I feel we are barely keeping our heads above water, and knowing that everything has to get worse before it can get better does not help….. But it is encouraging to read your blog, and see how well you are doing. I am so glad that you all had such a magical Christmas. All best wishes for 2014, and all that you aim to achieve in it. Love Liz x

    1. Thank you Liz! I really never thought that we could enjoy this sort of joy again after the beating we took. Hold on, keep being gentle on yourself and take small steps. I hope for you that this year things will ease a bit and you might be able to take a few deeper breathes and get a few glimpses of the good life that can exist despite Rett. xx

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