If we get to sleep, I usually wake up positive. This has been a big shift for me over the past five years. I didn’t use to wake up positive. Honestly, I was living in a fog. The fog of grief. Now most days I wouldn’t say there is grief, just a wave of sadness, and also not everyday. Most days, I’m fine. All things considered, I think that’s pretty good. I didn’t think I’d get to this place.

The reality is, emotionally we live moment to moment. When the good outweighs the bad, we’ve had a great day. It’s when the bad moments start to outweigh the good ones, that’s when we start to wave the white flag.

I’ve been thinking about this a lot. I am tired of the tease of calm waters. The past couple of years have no doubt been hard. Waves of symptoms affecting Magnolia. If it’s not seizures, it’s breathing issues, or GI issues, or balance issues, or unexplained pain, or her body weakening and tightening, her hands have mostly stopped functioning with constant wringing, the list goes on. Rett is relentless, but then we get moments and we breathe lighter. A little bit of weight lifts off our shoulders. Then those moments turn to weeks. We are in awe, we enjoy the reprieve, we hope it stays. We celebrate medicines working. We adventure. Then it stops. We watch daily as symptoms slowly return. The waves start crashing bigger again.

I try not to compare Magnolia to others afflicted with Rett Syndrome. Sometimes its curiosity, sometimes its jealousy, sometimes it’s survival. What is that mom doing that I’m not? I’ll reach out for advice. Usually when I reach out, I find out, they are drowning too or they are in their own dingy rowing like crazy trying to stay ahead of the next crashing wave. I’ve realized, every family is in their own small boat, making sure they are wearing life jackets, because the waves of Rett are relentless. Nobody has found land, not yet anyway. Until we find land, we will keep trying to live our lives as best as we can in our dinghies. #dinghylife #rettlife

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