Tuesday, October 9, 2012

Making changes

This is a photo of Simon's current night-time meds. It is practically enough to make a small meal of and it takes almost the same amount of time to prepare and feed it to him. The capsules need to be broken and combined with yogurt and fed to Simon. The liquids need to be taken slowly to prevent gagging, and the chewables come last... after dinner mints?

The "me" of two years ago would have been horrified to be pumping my son full of drugs. The me of today is just grateful that there is something to help Simon outside of the MAJOR brain surgery which is already being discussed. I'm hopeful that this cocktail is the most I will have to administer, but I know that more meds are on the horizon and will be our next steps in treatment.

Today we met with Simon's neurologist to review the actual EEG, get bloodwork, discuss new medicines (and their side effects) and schedule our next EEG for later this month. We pulled together paperwork and older test results for our meeting with Dr. Riviello on Thursday. We discussed how we could work all together as a team moving forward. Again, I realized that the me of two years ago would have been horrified to be surrounded by so much medical intervention, tests, and hospital time. The me of today is just grateful that we have the resources to get the help we need.

Sometimes I think that the me of two years ago would not recognize the me of today. I wonder if she would look on who I have become with a mixture of pity and/or misplaced judgements. Occasionally I'll see a reflection of my former self -- the confident and self-congratulatory mother of relatively healthy and well-behaved children --  in the eyes of another woman and I realize how far I have come and how far I yet may have to go. I see all in a moment how much I have grown, and I silently pray for that woman I don't know, that woman I was, that she may never have to walk down this path with me. I pray that she may gain the wisdom of a kind heart without ever having to go where others (including myself) fear to tread.

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