I will never forget that first night in the hospital… after a long, hard labor I had welcomed my beautiful little boy into the world, slightly jaundiced, but otherwise healthy and whole. My emotions were a mess as my two year-old daughter held her brother for the first time, snuggled beside me on the hospital bed, clearly still recovering from the terror of Mama being gone when she woke up that morning.
But as night fell and visitors left, I entered the first of many very long nights with my son. He cried inconsolably, struggling to nurse, struggling to sleep. Nurses tried to come and take him to give me a break, but I couldn’t rest, wondering how he was when he was away from me.
The confidence I felt when my daughter was born seemed to evaporate like early morning fog, as all my best efforts to soothe and nourish my son proved ineffective.
“Is something wrong?” I asked one of the nurses. “I can’t seem to help him. Why doesn’t he latch well? And why is he gagging?”
Patiently and calmly, the nurse told me some babies just took a little longer to figure it out, that some babies were fussy, that I should give him to her and get some sleep.
But I couldn’t sleep. Maybe it’s just a difference in personality… or maybe it’s a boy thing… after all, I had no experience with baby boys…
I tried reassuring myself. I tried to believe the nurse. But fear had started to set up camp in my brain. I knew something was not right.
Two days later we were sent home with a clear bill of health, apart from instructions to hold him in the sunlight to keep working at curing his jaundice.
My parents stayed to help, my mom holding her newest grandbaby in the sunlight with all the delight of centuries of grandmas glowing in her face. I held my daughter and rested as much as possible. We kept working at nursing. My baby boy kept crying.
“Something is wrong,” I told my husband. I told my mom. I told my pediatrician.
“Don’t worry, he’ll be fine,” they all said. “It’s probably just colic. He’s probably just a fussy baby. He’ll outgrow it. He’ll be fine.”
I turned to the dark and frightening world of self-diagnosis on the internet. Words like Developmental Delay, and Fragile X Syndrome, and Autism Spectrum, and Sensory Processing popped up. And I read, and read, and read.
And I cried with my baby as he tried to nurse, as he tried to sleep, as I rocked him, and bounced him, and shushed him with lullabies and humming.
Our first diagnosis from our pediatrician was at 6 months. We got a referral to a local early intervention program.
My husband got angry. Clearly I was just worrying too much. Our son didn’t need therapists. He was going to be fine. I was too uptight and needed to relax. Everything was fine.
But it wasn’t. So therapists came anyway. Speech was first, helping him swallow. OT came with a Wilbarger protocol. PT came and he started to walk.
And still he cried. And never slept through the night. And hated going to noisy restaurants, or being buckled in his car seat, or pushed in his swing.
Those first few years were painful, and exhausting, and lonely. I fought with my husband over every doctor visit, every intervention, every therapy appointment.
I still didn’t know what was going on, but I knew we were making progress, and I wasn’t about to quit.
Diagnoses came over the course of a decade. Puzzle pieces started fitting together. I became fluent in the language of visual schedules, and sensory inputs. I learned how to be the safe harbor my son needed by holding him close and bouncing instead of rocking. No humming. Definitely no singing. He needed me close with a firm touch and unintuitive silence.
He learned what he needed, and was soon able to let me know when he needed to jump in his trampoline, or just have some space by himself. He knew when he was ready to engage again, and did so with joy.
A divorce, remarriage, a stepson, and a toddler later, we have learned SO much. I feel like I will never stop learning.
My boy is able to be in the present moment unlike anyone else I’ve met. He loves people and forgives almost instantly. He has a huge, tender heart and a mischievous streak that inevitably gets him in trouble.
But even now I can’t allow myself to go too far into the future very often. There are too many unknowns. Too much is still uncertain.
Throughout our lives we face a multitude of uncertainties. What is the next right thing to do? Are we being lead by true intuition or by our worst fears? What if those two coincide?
Perhaps you have your own story of diagnosis. Maybe you’re in the middle of it right now. Maybe there is something else entirely that is your unfixable thing to be faced.
Whatever it is that kept you reading this far, take a moment.
Breathe in deeply through your nose.
Let the air expand not only your lungs, but your abdomen as well.
Let your breath out slowly through your mouth.
Let your face relax, your jaw loosen.
Drop your shoulders.
Breathe. Slow and deep.
Pay attention to that voice of wisdom inside you.
I could never have imagined all those years ago what life would be like today. But I didn’t need to. I usually had no idea if what I was doing was actually the next right thing. I fumbled around filled with fear and uncertainty.
You don’t have to do that. Or you can, if you want. But right now, you can breathe.
You can do the thing in front of you to do.
And you can do it with kindness for yourself and for those around you.
All will be well.
It may not be as you expected, planned, or wanted, but all will be well.
There is Love guiding us.
There is enough light for this moment.
All will be well.
So much love,