Maya just turned 11 and along with that birthday has been a host of emerging transitions for her and for us. She is a pre-teen now and there are emotional changes, vast physical changes, academic assessments and decisions that we need to make like how she approaches reading and writing and how we physically support her throughout the day. Birthdays are always a little hard (some more than others) as I naturally take stock of where we have come from and where we are going. As a family there is typically a realization that we must loosen our grip on some long held goals and perhaps bring others more clearly into focus, like purchasing a lift and realizing that Maya isn’t going to make transitions without one.

But in my heart I want it all for Maya! I don’t want to give up any of our goals or even place some on the back burner. And I feel a bit like a child stomping her feet and having a tantrum about it. On the other hand, my body and spirit tell me a change is in order for my health and the health of our family. There are only so many hours in a day and only so much energy we all have to go around. This emotional struggle isn’t new to me but it always creeps up every time a transition and reordering of priorities is staring us squarely in the face. And with CP, the need for flexible goals and continuous adjustments is a necessary lifelong skill for the entire family (thank you to the adults with CP who have gently imparted this wisdom to me).

As I muddle my way through some pretty intense grief and move closer to the next phase of acceptance, I find a small measure of comfort and confidence in knowing that I have been in this space before, many times now, and have successfully shed my old skin–we all have. We may have to approach our day differently, make more time to get from one place to another, or say goodbye to some of our goals, but we still find laughter, fulfillment and room for new goals along the way. On the days where the noise of my emotions is so loud that I can’t plan my next step, I know that it’s time to stop, let the wave wash over me and let the pieces of myself and my plans reorder themselves.

Here we go!



Much love and strength to all of you,

Michele, CP NOW nonprofit and CP Daily Living blog