Winning and loosing

It’s only April and I can’t believe the highs and lows from this year. I sat in awe this morning at just how incredibly amazing my life is. We have a home that is an easily accessible refuge for our family, I have a husband who is committed to live a life full of love and whimsy and the girls offer the craziest, most beautiful form of balance that anchors our daily life. There will be more clinical trials for Rett syndrome than ever before this year and progress in the labs is happening must faster than I could have conceived of just a few years ago. I have more than I deserve.


At the same time, I’ve had greater struggles with my own health this year. Claire is showing us new challenges with what she needs. I am seeing my friends daughters with Rett have greater complications and I’m hearing of too many girls with Rett syndrome leaving this Earth too soon.

In my head it’s balance. The hard, the dark, the grief, it allows you to appreciate the beauty, the light, the joy. Instead I am finding myself unsteady. As I see a friends 1 year old start to take her first steps, my chest tightens and I get a muscle spasm above my eye as I am reminded that we are still working on this skill with our 10 year old. As I feel the pain and grieve, I am surrounded by what I can best describe as the peace of God.  It’s so overwhelming and beautiful that I lean into it only to find that it is so intense that it feels like being hugged by a fire.

I am left fragile and in awe. It’s all so freaking good and so damn hard. It feels unsteady. I suppose that somehow it is balance. I haven’t been writing much and this is why. I feel like a broken record, it’s so beautiful, and so messed up. I hope with time that I might be a little less fragile and have a few more things to say, but you might not hear from me for a bit. If you are out there breaking apart too, you aren’t alone, don’t quit.

2 thoughts on “Winning and loosing

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