If I knew then…

Yesterday I posted this picture to my profile with this caption, “I didn’t know it at the time, but this picture was taken the day that Claire lost her hand use. The day before she fed herself Thanksgiving dinner, she hasn’t eaten a meal independently since then.” What I did not share was how I almost passed out just typing those words. I have really strong memories of that day and I wanted to share them, for those families who are dealing with a recent diagnosis, you are not alone.

It was Thanksgiving, about six weeks after we had received a diagnosis of Rett syndrome. Claire had just turned two and on that day fed herself birthday cake. That wasn’t at all unusual because at the time, she fed herself a lot of her meals. She drank her milk from a sippy all by herself too. In fact, she had such good hand use that they ran the test for rett syndrome to rule it out. Still the news sat heavy with us. Like anyone with this diagnosis, we wondered if the regression had started or if it had already stopped. Amongst the uncertainty we tried to keep living, we tried to move on that our little Claire hadn’t changed just because her label had. Since it was just the three of us we went up to Petaluma to stay at a fun hotel and eat a turkey dinner cooked by somebody else. We sat and tried to enjoy it but the tension was inescapable. Claire fed herself stuffing and mac’n’cheese. Jared and I were annoyed with the service. I don’t remember what exactly the problem was but I do remember something frustrating. Sadly I wonder if there was really an issue or if we were both just so stressed out that we made things more difficult than they needed to be. We went back to our room where Claire passed out and we went on pretending that everything was alright. The next morning we found the closest Starbucks and got our usual order but something was different. Claire would typically eat little snacks but she didn’t. Jared stared at Claire as she obsessively moved her fingers and hands. I tried not to notice. We had such fun planned for the day. We were driving out to Bodega Bay and stopping at an old creamery on the way there, what a perfect way to avoid black Friday. Claire passed out in the car and Jared and I fought. I told him not to obsess about her hands because freaking out wouldn’t help anything and he shut down. It is easy to look back and say if we knew then what we know now. The truth is that I have learned a lot. I have had to apologize to Jared. I didn’t realize it but his freaking out was just as much a real form of grief as my denial was. The problem is when neither of the two see the other form as acceptable. Since then I have met many families that have had the heartbreak of the diagnosis and the regression associated with Rett Syndrome. I just want you to know that it is alright. Whatever you are feeling, it is alright. Perhaps I am trying to make up for those fights that we had when I told Jared that it wasn’t alright and that he had to embrace Claire how she was. Either way, just know that you are not alone. The pain that goes with watching your child slip away and not knowing what is next seems obvious, but sometimes it helps to hear somebody else say it’s alright.

3 thoughts on “If I knew then…

  1. I think it is SO very important that parents take the time to grieve in whatever form it takes. Telling parents out there that it is alright to feel is powerful coming from someone who has been in the trenches. I've learned grieving is something you can't necessarily do together. Thanks for sharing this…I'm sure it was difficult to remember that crazy time.

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