Slipping and Enough

I should have expected this, after all, we moved. Miraculously I remembered to notify the company that delivers our diapers of the new address right away so we didn’t miss that delivery, just a few days after the move. I somehow managed to keep all of the prescriptions filled, even if that one time we were down to the last mL before I could get over to the pharmacy, we didn’t miss a dose. I did have to cancel the eye doctor because I forgot about that appointment and scheduled two others at the same time. It didn’t really matter because the nuero called and squeezed us in at that time anyway and we have to cancel the other two appointments too. Then I remembered to follow up on the mount. We have a rolling floor mount and the arm broke so instead of moving it, we shipped it off to be repaired. I had forgotten all about it since the week that we moved Claire’s Eco broke and it was out for repair too. I sent instructions with the mount, if you fix it before this date please mail to here, after this date, please mail it here. Since we didn’t have to pay to have it repaired they just fixed it and sent it back, to the old address, after we moved. But I had no idea. Eventually I called the company to ask how the repair was going, that’s when I found out it had been delivered and that the person at our old address was out of the country, ugh. A week later they returned and surrendered the box with the mount. That’s when I followed up on the Eco. It’s a mess. Claire’s lovely and well meaning teacher didn’t know that we didn’t use the doctor that she though we used. I didn’t find this out until the Eco had been away for almost a month. So we are just starting the process and she will be without her voice for a few weeks more and it’s all because I let stuff slip and didn’t follow up. I also ordered her gift from American Girl to the wrong zip code and now it’s on back order. I have been finding a bunch of stuff that I let slip this week. It all culminated in my crying on the floor in my closet as I looked through papers and couldn’t find that one that I needed. I felt so helpless. There is more to do than I can possibly keep up on. Aside from all that business of life, there is the actual care of Claire that is also more than is possible. Sometimes if I am not right next to her to notice when she gets stiff and get her oxygen, she ends up turning purple and and twitching uncontrollably. I might remember to rub her feet well and get the dead skin off but forget to stretch her left side and then she ends up crooked for a few days, it seems to never end. What happened? When we started on this journey I had it all together. She got her Eco in record time, saw each of her specialist regularly, everyone who worked with her was thoroughly educated on each of the details of her care and we kept a schedule for stretching, meds and all that stuff so that nothing got missed. I guess life happened but if I am honest, it’s bigger than that. I let go. I stopped grieving by trying to control. Funny thing, when you let go, things slip, that’s what happens. In my tears, on the floor, amongst all those papers it was alright. She won’t have her voice for Christmas or the new parts for her wheelchair but what we have is enough. I have a picture of Claire in her 1st grade class, she is blurry because her friends are dancing with her and pushing her in a circle. That would never happen if I hadn’t let go. The true miracle of it all, that more stuff falls into place than slips through the cracks when you let go and even better, I not too busy to notice. Here is my visual reminder from yesterday, I took Chloe out for hot chocolate and to color. She came to the door with two crayons. I told her we could use a purse and she could bring so more. Here are the contents and it was enough, lesson learned.

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