It happened after leukemia treatment ended. I had spent over three years during treatment waiting for everything to get better, and then it didn’t. I gave it time, it still didn’t. I gave it more time. You get the picture.
Since bringing Ben home, I had consistently set my sights on the next hill, just knowing that once we got past that next hill the downhill roll would begin, and his quality of life would dramatically improve.
And so would the rest of ours.
It happened over and over and over. Sometimes things would get better, but it never lasts. And you know what they say about hope deferred. I lived for years with the heart sickness of deferred hope.
Until I let it go.
Don’t get me wrong. We’re still diligently pursuing every avenue possible to give Ben the fullest, best life possible. I’m just realistic that he has a complex, convoluted situation, and that we need to live our best lives in the present rather than chasing an elusive dream of an idyllic, or even normalish, future.
In so doing, I have avoided the devastating crash of the next wave coming, because instead of stubbornly believing that it isn’t coming, I’m dutifully preparing and watching for it. Instead of constantly setting my sights to an unlikely future, I’m living today and working to make it the best today possible.
By being realistic that each day and the foreseeable future will be just as challenging for him, I can manage our resources to make sure each day is the best we can make it with the challenges instead of wishful thinking of coming days without challenges.
Letting go of that wishful thinking nearly crushed me. I so want for my boy to be happy and healthy in every possible way, and admitting that the next breakthrough wouldn’t necessarily make that happen was a paradigm shift of epic proportions. It left me learning a whole new way of coping with life with the complexities of my child’s needs, but I did learn. I learned to be more steady and cautious with my energy and optimism, and to live fully, focusing on each day and giving it my best in the moment.
And though letting go of hope comes with a certain sadness, it also comes with freedom and peace.