Regression happens. Eight years post diagnosis, I have lost track of how many times it has happened. I know this is just the nature of things.
We were getting used to things being easier, not so intense, not so destructive, not so rigid. We began to relax, to exhale, to forget.
We also began to schedule more, take on more daily requirements, travel, eat less strictly – because we were doing so well. Maybe we got a little too ambitious. Maybe we forgot a little too easily.
It was almost imperceptible at first – a minor irritation over the schedule not being just so, small noises suddenly being an issue again, a meltdown always simmering there, under the surface.
Now, it’s obvious.
How could I forget? It’s not always forward.
I am fighting feelings of fear. The stress and the chaos, the damage and the pain – the boy I love so much struggling so much.
I have spent a lot of time the past few weeks bouncing back and forth between denial, anger, and waves of depression. Because, you know, there are stages of grief, and this is grievous.
More than that, I have spent a lot of time wishing it was different. Or worse yet, thinking that it needs to be fixed, needs to get better, needs to be changed, before we can live again.
It’s Not Always Forward
It’s one of the greatest lies of motherhood – that my children are somehow supposed to be linear.
The grade-level evaluations.
The social expectations of a nine-year-old vs. a twelve-year-old.
The expected reactions to medications and therapies.
The entire world tells me it’s supposed to be forward.
But it’s not always forward. Sometimes, it’s like we are moving in a circle. Sometimes, it’s like we are sitting down in the middle of the road, catching our breath. Sometimes, we are struggling not to run backwards to the comfort of how it was or at least, how we thought it would be.
It’s the very nature of a regressive child.
“How we live our days, of course, is how we live our lives.” – Annie Dillard
Every time I read this quote, I tear up, not only because I am exhausted, emotional and a little crazy, but because I know how much I struggle to live like it.
These moments, even the ugly ones, are all blending together to create the tapestry of our lives. They ultimately will make up my boys’ childhoods. They ultimately will make up my motherhood. I don’t want to wish them away. I don’t want to resent them. I don’t want to sigh and moan and groan and think that I am somehow getting a raw deal.
My life is nothing but a vast collection of all these swirling, slippery moments.
Mothering a Regressive Child
I may not always understand, but I pray for the faith to lean into it. God has shown me over and over again that He is in our midst. He gently, lovingly assures me that it’s not about moving forward. It has never been.
I don’t want my first thought each morning to be, “I can’t do this again.” I know better. I know that playing it all out and expecting the worst never serves me or my family well.
I pray for grace to remember that the real beauty, the real grace, the real living happens only in the day-to-day, right now.
I pray I remember that forward in the kingdom so often looks backward. The least is the greatest. The servant is the master. Death brings life.
Forward is overrated.