I had this post nearly worked out and ready to write when I received heart breaking news. Those of you in our rett family may also be experiencing grief after learning about Anna. After I got the news, I got really angry along with a whole bunch of other emotions and have had to fight really hard to get back to a place that I can see beauty in life again. The simple truth is that life is made up of lots of little moments. The past weekend I had a few that caught me off guard and it was pure joy. So I have decided to share that story with you in a hope that it might encourage or inspire you. Sometimes hope pops up when you least expect it.
It had been a very long week. The process of Claire starting a new class with a brand new teacher and a brand new aide with a new SLP and PT had me pretty overwhelmed. Claire was doing well and I was terrified that I would let them learn Claire and in the process we would loose ground, the spark in her eye would dull, the anxiety would take over, the seizures would come and the little ability to use her body that she had would decrease. Those emotions alone were enough to exhaust me. Add to it the ignorant and hurtful things said by random people and the work of taking care of the girls. I was moving through each day, trying to put one foot in front of the next and be as optimistic as I could, but I was tired.
When the weekend came we had the opportunity to go to our farm and pick a load of tomatoes. Food inspires me. Knowing where our food comes from gives me such joy. Every year I can enough tomatoes for the year. Each week, when I open a jar, I think back to the times that we have visited the farm, what the air smelled like, what the girls faces look like stained with tomato seeds, catching Jared eating off the vine (he claims to not like tomatoes, so it’s a big deal) and the trunk of my car stuffed with bags of beautiful early girls. We had a relaxing morning and eventually made our way down to the farm. Claire had fallen asleep in the car as she was recovering from some “brainstorming” for lack of a better word. I had low expectations of this trip. I figured I would stay at the car while Claire slept and enjoy watching Jared and Chloe in the field. So I was delighted when Claire woke up pretty lucid and ready to go have some fun. It turned out to be a spectacular day. After testing a few tomatoes and hanging out in the field a little, farmer Tom started up his tractor and we went for a ride. I am not sure what exactly it was, but sitting on a hail bail bouncing around on the dirt was an equalizer, in that moment, rett syndrome wasn’t keeping anything from Claire. She sat and enjoyed the sights and sounds like all of the other kids. As we went down a row of apple trees, Chloe picked them, eating two apples, one in each hand. We stopped at a field of strawberries and Claire savored the soft fruit, warm from the sun. Other than one moment of boredom, Claire was so at ease, not fighting her body or frustrated that she couldn’t tell us something.
After eating our fill of tomatoes, apples and strawberries, we packed up and headed home. As we drove I felt content. Claire hadn’t had a seizure and Chloe didn’t tantrum. We had 35 pounds of dry farmed early girls that were begging to become salsa and a handful of padron peppers to snack on during salsa production later on. Typically, I start the whole canning process after the girls are in bed for the night. Being as tired as I was, I thought that perhaps I would get a head start while the girls were still up. Then the most obvious of thoughts finally popped into my brain, let them help. So Chloe washed 10 tomatoes for me. We hooked up Claire’s switch to the blender. I put the serranos in and then Chloe added the tomatoes. Then it was Claire’s job to pulse it and she did great. Both girls loved being part of the process. Claire lit up and Chloe jumped up and down cheering her on. The whole process that they were involved in was only 10 minutes but I think it might have been the best 10 minutes of the year for me.
It was in that time that I remembered about a dream that I had long ago. When we moved here, Claire was still a typically developing child. I dreamed of taking her to Pie Ranch and other fun food things. As the regression set in I stopped dreaming and I honestly had forgotten that I ever had. In that 10 minutes I not only remembered that I had a dream, that was being fulfilled, I was reminded that Claire continues to do lots of amazing things. Her life is full of so much potential. I was inspired once again to dream bigger and to hold on to hope. Hope that today can be wonderful, that Claire can be her own person, outside of her diagnosis. Hope that our life can at times feel normal and be filled with joy. In the context of all of the events of last week, I am reminded of the gift of each day. Some of them filled with things harder than I ever imagined and others filled with dreams bigger than I knew. Now I just hope that on the next hard day I can remember this and maybe even dream a little.