Tonight I write with sadness. I am feeling constrained, tied down by the life of my girl.
For it’s long after the diagnosis, the therapy regimens and surgeries, the doctors appointments and research, that the life we have both chosen to lead is clear and ragged and oh so different than what I had ever planned.
It’s a life where everything is in slow motion because that’s how our girl rolls – literally sometimes. It’s a life where there is never any pick up and go, jump in the car let’s have an adventure, c’mon lets be spontaneous and free and easy.
It’s a life where we don’t get invited places because we literally can’t access them. No hiking, no exploring, no let’s let the kids run around – heck let’s run around with them!
This life is calculated and measured by steps to be taken, stress she can handle, places she can fit or roll or manage. This life is full of limitations, and tonight I am feeling all of them. The friends who don’t know how to just hang with our girl, the friends who don’t know how to hang with me because we are different, and different can be pretty uncomfortable for many who don’t understand. Truth is, sometimes I don’t know what to make of us either.
I find myself planning my life around her. I have the great joy of two fun weekend plans out of town, but for me that becomes a challenge. Two consecutive weekends away from my girl are stressful for her as our support system is adequate, but definitely not great. So I chose one weekend over the other when my heart clearly wants to do both.
As I write this, I shed a tear for my lost fun, my cumulative sacrifice of almost 15 years and I wonder in my sadness, how will this continue? How can I continue?
Clearly, this is a moment, an opportunity to see what I really want. Funny how a single tear will literally wash out the fog of emotion so that I can shift toward what I desire.
Tonight, I want a support system, someone who can help with my girl who gets her, who has fun with her, someone she can enjoy and hang out with who has the skills to help her. In short, we need a clone of my girl’s big sister to bring love and joy and play and understanding.
I need someone to help her go to bed at night, to manage the up to 2 hour routine with fresh legs and a happy heart, for I see that I am weary.
I am weary.
This journey is full of love and expansion, but it is long. Endurance is not for the feint of heart. It requires training and rest, good nutrition and support at every turn. It requires a constant assessment of the current conditions and appropriate adjustments to those conditions.
So here I am, just reassessing my situation. What am I going to do with it?
Get some help. Know anyone?
P.S. Just having a plan makes me feel oh so much better. Doesn’t that work for you too? Clarity, my friends, even for the next moment, is what brings peace, connection, ease.
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