Day 617


The boys have had a wonderful day. It’s Friday. They both knocked their tests out of the park. Kathy, Gana, and Uncle Bob brought them lunch to their schools. They each came home with a friend and spent the afternoon playing in the rain. In the evening we enjoyed a nice Italian dinner with our family. A wonderful Friday indeed.

I went to my third counseling session with the therapist referred by the Children’s Cancer Center. She’s lovely to sit with. She has helped me quite a bit, but I actually cut today’s session a little short. I felt I’d come to terms with this genetic discovery and had figured out how to plant myself firmly in the moment. I have been successful at redirecting fear for several days and have been enjoying the bliss of the now (Wednesday’s bagel joint revelation really helped). I didn’t think I needed any more help. I even went to lunch with a dear friend afterward, and felt the same way as I was talking to her about it–at peace. Then, my peace was challenged. As I imagine it will be again and again.

The challenge came in a series of emails. I am now part of an email group organized through the Toronto physician’s office to connect the CMMRD families that wish to speak to each other. There are only twelve of us on the list. As the other mothers started to introduce themselves and describe their children’s histories, the reality of this whole situation came screaming at me again. They were hard emails to read. But they made me so grateful that we have identified this predisposition as early as we have.

I think Michael rode the same emotional roller coaster today. He told me that this morning he saw Benjamin hold his tummy a moment and wince. Benji told Michael he has been hurting there a lot lately. Michael didn’t have to tell me where his mind was going. Every ache, every pain, every everything is being seen through a new lens now. We talked each other back down to earth. Benjamin’s pain is likely a gastritis or ulcer type issue induced by sustained steroid use. We already have a colonoscopy and endoscopy scheduled. We’re addressing our concerns as quickly as we can, and right now, in this moment, Benjamin is just fine.

I found the vav today as I watched the boys playing in the afternoon sunshower with their friends. Peace returned easily. These moments are beautiful moments.

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