“We must let go of the life we have planned in order to accept the one that is waiting on us.”
Fourteen years ago this month, I found out I was pregnant. Brian and I were so happy, we had been married six years and were ready to become parents. I guess almost as soon as you find out there’s a baby coming, you start dreaming. The first one for me was dreaming about whether it would be a boy or girl. For some reason, even from the beginning I felt like we were having a boy, but the wait to find out seemed to take forever.
Then finally, we knew for sure that a boy was on the way, and a whole new set of dreams started. What would he be like? What would he enjoy? What would he be when he grew up? I think Brian probably had dreams of a quarterback, my Dad of a fishing buddy, and me of a history loving bookworm.
Even those first few months staring at that adorable face I just knew all of those dreams would come true. He was precious and seemed perfect in every way. After all, nothing could ever be wrong in our family; we would breeze through life with an incredible son who everyone would wish they would have been lucky enough to have.
Pretty quickly though, things did go wrong in our family. Milestones were delayed, and in some cases missed completely. We watched kids born after Collier rapidly surpass him in almost every measurement. We carried him from doctor to doctor and therapist to therapist amassing several diagnoses along the way. The one day in 2013, right before his 6th birthday, we got the granddaddy of them all……autism.
While part of me did mourn the diagnosis, another part of me went into research mode. If there was a way to help my child, I would find it. New doctors – got them; new dietary program – started immediately; supplements to help him function better— my house looked like a pharmacy. Whatever it took, we would find a way to make Collier succeed and make him the exception to all those scary autism statistics.
The last seven years we have poured our hearts, souls, and finances into helping our son. But over the past few months we’ve had to face the harsh realities that so many of our dreams will not come true. Collier’s autism is also joined by an intellectual disability, and it is not improving, despite all of our interventions. All of our evaluations in the past year have put him in the less than 1 percentile for speech, language, reading, academic fluency, and academic skills. Can you even imagine what it is like to know that more than 99% of kids are more functioning than your child? I honestly hope you don’t, because it’s pure unadulterated heartbreak.
I always thought, if we just work harder he’ll understand. Or if I just find his “style” of learning it will magically click. Or a million other “if onlys” and “maybe this times.” But I think I’m finally ready to let go of some of these thoughts and dreams. It really hit me hard recently. We had spent three days going over an event. We had read an article about it, read a chapter in a book, watched a narrated timeline in a Teachers Pay Teachers unit, and watched three YouTube videos. Afterward I asked him to explain to me what the event was, and he simply looked at me blankly.
It’s not like he didn’t want to tell me. He put his head on the desk, pulled at his hair, tried to come up with something, and ended up in tears still not able to give me a simple answer. But the final stab to the heart was when he asked in a tiny voice, “Are you disappointed in me?” Because the resounding answer to that question is NO! NEVER! I watch this kid work hard every day trying so intensely to get the answer right and trying desperately to fit into a world that isn’t made for him.
It was then I realized, it was time to really, truly, finally let go. To realize that there was no miracle intervention coming, no life changing therapy, no brain curing supplement. To accept that this may be as good as it gets and find a way
to live with to celebrate that. To once and for all let go of the life I had planned, not only for Collier but for myself, and embrace the true path before us.
So here I am, letting go. What is that going to mean for us exactly? Well, probably things along the lines of focusing more on how to cook and clean than learning all the amendments to the Constitution. Or working harder on budgeting and balancing a checkbook than we do algebra. But I think the biggest thing is just accepting and loving Collier for where he is today. I never want my son to feel like a disappointment. Like the Psalmist I want him to know he is fearfully and wonderfully made. How can I advocate for autism acceptance in the world, if I’m not doing it in my own home?
I think it also means finally letting go of other personal dreams I’ve had for him as well. That he would drive, marry, have a job, live independently, and one day make me a grandmother. And how’s that going, you ask?…..Well, if you could see the tears on my keyboard you would know. Could any or all of those things still happen?… Maybe. But I have to get myself to the point that I’m ok if none of them ever do. Otherwise I know I haven’t truly let go and accepted him.
Does this mean I’m giving up? Hardly. I’ve already been in research mode again – but this time for the best functional reading and life skills math curriculums (if you’ve got a suggestion, let a girl know). I’m also working on a list of local social skills programs geared toward young adults for when life gets back to normal again. There will ALWAYS be goals in this house (sorry Brian and Collier), but they will just look a little different from here on out.
And it’s ok to be different.