Leaving Room

IMG_5288When Claire was 18 months old we took our first step into the adventure that would become living in Rettland by starting physical therapy. Before there were any blood tests, behavior assessment or other services, there was PT with Dr. Tiffany. She was our first point of contact for helping Claire and I hung on her every word. She explained the mechanics behind what Claire was and was not doing and how the wiring in the brain worked. The most profound thing that Dr. Tiffany taught was was to wait for her. Before we knew that Rett Syndrome was a thing that people got, we were learning to wait, to give Claire space to contribute. I’m still working on this concept, albeit on a more generalized level. I have learned to wait for Claire. I have seen the value in giving her time to make a choice because she really does care which pieces get picked out for her pumpkin, it just takes her body forever before it will do what her brain is asking. When I back off and leave room for her to answer, the payoff is often so rewarding. Yesterday, instead of silent tears in her bed (like years past) her gentle smile lit up the room when her pumpkin was complete. It was a victory for everyone involved. It reminded me that much like Claire, I need to leave space for people to help me and get to contribute. It has been such a difficult pill to swallow, admitting that I need help but I’ve started to. As I have shown my vulnerability and invited people in to assist me, I get to see the joy that they experience in helping out and that is truly beautiful. It’s one of the many lessons that I get to learn with my constant little beautiful reminder Claire. We must go slow and leave room for people to contribute, sometimes we get to help and sometimes we need the help, the good stuff is in the flow between it all.

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