The Battle Between Control and Acceptance
It’s an ongoing tension.
The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Mike and I love to problem solve. We continually evaluate our days and tweak here and there in an attempt to make things better. We keep a backpack fully loaded with diapers, wipes, change of Jack’s clothes, antacids and liquid Motrin. Whenever we want to go out somewhere, we are prepared. I make a weekly meal plan so I only have to make decisions about dinner once — not 7 times. And I make enough food for leftovers. I feel so passionate about controlling my environment, that I even wrote a post about it.
What I find ridiculously hard for me is acceptance. I’m not talking about trying to catch Jack up to his typical peers. That ship sailed a long time ago. No, what I’m talking about is that no matter how much Mike and I may plan, we won’t be able to troubleshoot our way out of every situation.
As some of you know, Jack has been on a medication for the past year which has dramatically reduced his headaches and self-harm, and has greatly improved his mood on a consistent basis. Sounds perfect, right?
But it’s come with a major side effect.
In a nutshell, Jack goes a week and a half without sleeping more than an hour or two each night, then crashes for 14 hours of sleep for about week. Then he has a few days of normal sleep, then the cycle begins again. Every month. Without fail. I write about it more here.
This month marks a full year of tracking sheets, data compilations, and working with talented and patient specialists who struggle with us to resolve his sleep issues.
It’s so frustrating that we keep addressing this wacky sleep schedule with other drugs. And our reward is a new crop of side effects, which require new treatments. Yet the bizarre sleep cycle stubbornly remains, sneering at our efforts. It’s like playing “whack a mole” with his body. We ask ourselves whether we’re helping him or torturing him with our good intentions. Some days it’s impossible to know.
The Cambridge Dictionary defines acceptance as
1. general agreement that something is satisfactory or right, or that someone should be included in a group: 2. the act of agreeing to an offer, plan, or invitation: 3. the fact of accepting a difficult or unpleasant situation: .
In the first half of my life, I basked in the first two sunny definitions of acceptance. I happily accepted ideas and friends and jobs and promotions. And even Mike’s proposal.
Yet acceptance in the second half of my life frequently involves the harsh reality of the Cambridge Dictionary’s third definition. This by far has been the hardest one of all. I’ve had to accept Jack’s physical and cognitive limitations. That our family life will look different. Some of our options reduced.
Mike and I must struggle and work out for ourselves our own definition of acceptance. How far to push the testing and the medications versus accepting the fact that his life will have periods of pain that we can’t fix no matter what we do. That will take an awful lot of humility on my part and an ongoing challenge in the coming years.
I don’t know whether or not Jack will remain on this prescription much longer — a miracle medication that gives him peace of mind, happiness and focus, yet strains his body physically. Our plan is to evaluate by summer if we can better manage his sleep side effects through a promising medication finally approved by our insurance.
If not, we stop the treatment. And work our way through the inevitable disappointment and grief that awaits.
But I know that once we walk through this painful wall of sadness, we will eventually make it to the other side and view the beginnings of acceptance. That’s happened before. But it won’t happen on my timetable. There will be nothing Mike and I can do to troubleshoot our feelings away, except trust in the knowledge that we’ve done all we’ve could.