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The hard
Christopher and I were lounging in the pool over the weekend and I realized it was time for his Vimpat, one of his seizure medications. I asked my husband if he would go inside to grab me his syringe I had packed and a water flush. We floated over to the pool steps, I administered his medication and flush, and then we pushed off. Alexander was sitting on the edge of the pool and said “taking care of Christopher is hard.” Sometimes he says these things just as observations and no other reason. The older he gets the more and more he realizes what needs to be done to care…
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Favorite things. For me.
As promised. A list of my favorite things! I’m going to do my best and try not to have every single thing related to coffee, but I can’t make any promises. 😉 I have to tell you that one thing that has changed for me during this quarantine is that I have started to care a little bit more about me. I have tried to practice self care, even though days are crazy long and I’m exhausted. Aren’t we all? It’s been a helluva time trying to be all the things to all of the little people in the house. School teacher. Therapist. Assistant. Nurse. Playmate. House manager. Chef. And…
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Our visit to the NIH
We recently took a trip, not to be confused with vacation, to the National Institutes of Health in Maryland to participate in a research study. This study is for CDG’s and will give researchers knowledge to *hopefully* help people in the future. The first thing you will read when consenting to the study is it is voluntary. It’s voluntary and you can withdraw at any point. It also clearly states that you may receive no benefit from taking part in the study. Most of this I disagree with. It may be voluntary but it’s necessary. It’s necessary for children like mine to participate. Without them, there is no study. Without…