Lately it has felt like I have taken quite the beating from life, most of it compliments of rett syndrome and chrone’s disease. I won’t bore you with all of the details, but I have been talking to doctors way too much! For two nights Claire has been having what we suspect to be cluster seizures in her sleep while she is still fighting off pneumonia. Yesterday horse therapy was canceled so that we could go to urgent care. Once we got her in bed and asleep it wasn’t long before the episodes started, we were on the phone with the doc and had the Valium ready to give in the even that we couldn’t get the seizures to stop. I fell asleep in her bed, holding her, shaking her every time an episode would come. Around midnight I woke and realized that she was alright and that the hell had passed so I stumbled back to our room to collapse. About six hours later I heard more sounds on the monitor. I ran in to check on Claire to find that she was simply back. Happy as a clam and laughing in her bed, trying to wake her sister. I tucked her back in and she eventually drifted back to sleep. It was in the moment of the short walk back to my room that I heard it, it was a peaceful silence, it was such a fond old memory. I used to get up early to go to work and I loved the still of the morning. Feeling oddly rested and inspired I deiced to b e up for the day. With everyone asleep I was even able to shower! I made my way to the kitchen, did the dishes that hadn’t been touched in days and pulled out the bag from the CSA. It might not be exciting to you, but this was the first week of the season for our CSA and I get rediculously excited about it. I even took a picture of it on Wed. when i picked it up.
It was such a pleasure to go through and plan what I would cook, first I had to take the two slugs out of the bag and relocated them to the side of our porch. Then I made ravioli, broccoli and the pasta for the week. Just as I finished Claire beckoned that I come get her that very moment. She was very happy to sit and watch Food Network as I finished up. I let her choose what we would have for breakfast, she decided on pancakes, or as Chloe calls them, pan-cup-cakes. Jared slept in a bit as the girls played, I made pancakes and finished up the dishes I started. At ten to 8 everyone was happy, the food was hot and I felt at peace. It took me back to eating pancakes on a trail ride in Colorado. One of the cowboys had said over and over, “Where you go, there you are.” I know it sounds obvious, but it was sure a good thought to have. I don’t have to stay living every minute in pain and fear because I don’t know what will happen next or bruised from everything that just went down. I can be where I am and enjoy it and it certainly helps when my house is full of really great food!
2 thoughts on “Where you go, there you are”
Wow!! I was wondering why you hadn't responded to my mail. you are right sometimes we need to also enjoy peaceful moments and not fearing the worst about Rett. Did you go for the EEG appt?
Hope she feels better soooon!!
big hugs. 🙂