I will never forget the first time my daughter rolled over. She was just two months old, and by some fluke she managed to flip over while laying on the bed. I made a huge deal of it, as only a first time mom can, talking to her, cheering, and immediately beginning to anticipate when she would roll over again. Days turned into weeks, and weeks into months. Then one day she did it. And then again. And again. Suddenly she was rolling across the living room, going wherever she wanted.
Her development continued in this way… she would consistently do the next “big” milestone, like sitting up, or crawling, or walking, one time and very early. Then she wouldn’t do it again for at least two weeks. But once she did it the next time, she had it nailed. Seriously, once that child started to actually walk, she rarely fell. It was like from the beginning of her life she was wired to only do something if she could do it well (yikes, I know).
Her brother was quite different. He took forever to hold his head up in a way that made me confident he could sustain it. Every developmental milestone was delayed, heightening my search to figure out what was going on. I think I thought if I knew what was happening, I could fix it. There must be some therapy, some medicine, some diet that would help him.
But no one seemed to have answers, and even when answers came, solutions did not follow.
It was the first time I’ve felt so completely powerless.
We would go to church and I would stay in the nursery to help, watching all the other babies doing things mine could not do.
Comparison to his sister or to his peers was excruciatingly painful. I knew I shouldn’t do it. I had heard all the people say, ” he will do it in his own time.” And I knew that if he was going to do anything, it would be in his own time. The problem for me was not the delay, but the unknown… it wasn’t about doing it in his own time, it was about what he would or wouldn’t do at all.
Each milestone that passed brought a fresh wave of grief.
Would he learn to sit up?
Would he crawl?
Would he walk?
When would he say words I could understand?
He cries so much, if he could just speak, maybe he could tell me what’s wrong and I could make it better…
Then came school, and all the things were hard. Fine motor, reading, writing, math, peer relationships, gym class, recess, field trips…
And with each struggle, grief. We can say all the nice things about developing character and growing through adversity, and I can accept that to be true for myself. But for my child? Sure, to a certain extent, yes. But not like this. When everything is hard, that doesn’t grow you, that defeats you. There has got to be a limit to what a person has to bear.
Of course, this was really just my struggle. I would guess that if my son could tell me about his early school experience, he would say it was fun. He knew he was loved, and I have entire scrapbooks filled with joyful pictures of shaving cream projects and sensory tables, PT’s balance beams and OT’s scissors.
He might have been behind his peers, but I am pretty positive he was blissfully unaware of any difference.
No, this was mostly my problem. But it really was a problem. Grief seemed to ooze from my pores, like too much garlic. Grief over the unknown, grief over the unfixable. It never quite left and it never quite consumed me. I pushed it off with prayers focusing on what I had to be grateful for, and all the things I could do to make things the best they could be. I believed in cures and new medications and miracles. But just underneath the surface, I questioned God’s goodness, and felt plagued with the why of it all.
Then one night, in the middle of the night, laying in my son’s bed as he rocked back and forth beside me, unable to sleep, I heard very clearly, “I am not going to heal your son. This is something both of you need.”
Tears welled up in my eyes and ran silently down my cheeks. This was not the answer I wanted. This was not the clarity I sought. And yet I knew it was true. Deeply and unshakably true.
Since that night, I have experienced varying degrees of acceptance, from raging against it to hesitantly embracing it. The words that God placed on my heart from that time on have been trust and surrender, neither of which seem to be my forte as I am still working on them over a decade later.
Through all these years of grief, it seemed like no one really had the right words for my experience and yet I knew it was not unique. Many other parents I talked with experienced similar sadnesses as they raised their children with special needs. This grief was not a one time event, as in the death of a loved one, with lasting impact. Instead, it was a series of events (or non-events like missed developmental milestones), each like a dull ache, lingering… chronic grief.
Sometimes I felt guilty for feeling the sadness at all… my child was not typically developing, but as far as I knew his disorder was not life threatening. How could I grieve when other parents have lost their children?
But I’ve learned that grief doesn’t follow rules, and feeling guilty for feeling what we feel rarely makes us feel any better. In fact, more often it leads to despair and stuck-ness.
Instead, I have come to expect this chronic grief. It seems to be a natural partner to chronic illness, but I never know when it will show up, I just know that it will. And when it does, the only thing to do is to acknowledge it. Look at it, full-on, without hiding. Much like a storm, it is here now. It was not yesterday, and it likely will move through by tomorrow. Somehow acknowledging this makes it both less surprising and less overwhelming. I feel more able to roll with it, and not be drowned.
And just like an unexpected rainbow immediately following a storm, as I have come to expect grief, I have also been amazed by joy. As I get better at letting go of my own expectations for what “should” be and accept what is, I am finding that what is can be exquisite. Joy springs up in the recognition of goodness that still surrounds and upholds us. Joy slips in in the simplicity of mutual care, expressed through small acts of kindness. Joy underpins the creation of our own path, making a unique life that works for us. Joy overflows in watching my children grow at their own pace, in their own ways, light-bearers all.
Grief still settles in beside me at times, usually accompanied by some worry about the future, or perhaps some present pain, but it is a familiar presence, lacking the power it used to hold. This life, all of it, is making me soft and strong. It is forming me and my family into the shape of grace.
Wherever you are on this journey, may hope accompany you. May you see dawn breaking on the horizon, because even if circumstances don’t change, you can. May this path open you up and fill you with grace.
So much love,