Yesterday was not unusual. It began with the customary round of whinging.
“I don’t want my eggs like that. Can I please have runny, not hard?”
“He’s got my hard egg! Why did he get the hard egg when I wanted it?”
I swap them.
“But he touched it! I can’t eat it now!”
Just eat it.
“Don’t put sauerkraut on! Awww, I don’t like it ON the eggs it has to be NEXT to the eggs.”
“I want mine mixed in. Not on top. I can’t eat sauerkraut on top.”
Sauerkraut is like medicine for your tummy. Shhh, just eat it.
“I love sauerkraut, Mum. Give me more! But not on the hard egg. It HAS to be runny.”
The knot in my stomach which re-formed the moment dream-reality made way for the watery light of dawn, tightens a notch. I watch volatile Mr 6 anxiously for signs of meltdown and try to keep the emotional temperature of the room below lift-off. The tasks mount up. 45 minutes to departure, another course of breakfast still to do and cooked lunches and salad yet to commence. I flick on Ed Sheeran, my pretence at calm. The boys hum along.
The day is bulging with unmet tasks when we arrive at school fashionably late. I am geared to drop, kiss and run. The Year 1 teacher has other ideas.
“May I talk to you about an incident in drama yesterday?”
If, like me, you have a child who walks precariously between function and implosion; who overreacts to basic stimulus such as heat, light or sound; who bolts when overwhelmed and cannot be touched to calm; who spends most of his day in a state of pain or fatigue with his body burning hot and mind foggy; then you’ll know. You’ll know that feeling.
My knotted stomach climbed a notch to nausea.
“Sure”, I smile, endearingly, submissively. Smiling helps with hostile teachers I’ve observed.
“Yesterday, William was spooked in drama. We’re not sure of the trigger this time. He’s not in trouble, but he ran out near the road and couldn’t speak afterwards. We need to develop a strategy for when this happens”.
So we talked while 22 six-year-olds swarmed around our feet. The bell came and went, the kid’s behaviour degraded like boisterous puppies, and William’s teacher looked intently at me and said “I’d like to hear more. I’d like to know how I can facilitate him better. Let’s make a plan. Now’s good.”
My gut eased.
If, like me, you are the mum of a child who cries without reason, cannot eat a carrot without a tummy ache (or amines, salicylates, oxalates, sugar, grains, green things), overreacts to external stimulus, and treats education as a revolving door, you’ll know what happened next.
Yep, I sat in the car and cried.
You’ll know just what that teacher’s kindness meant to me.
You’ll know how many times a teacher has rolled their eyes disparagingly in your direction because you asked that they not partake in the birthday cupcakes. Sugar makes him crazy, you say, which is a tiny slice of the bigger truth.
You’ll know how damn hard it is to keep him level enough to even attend school. You’ll know of the days missed when you couldn’t get him functioning, the expensive appointments, the healing food plans attempted and rejected, the extended family irritation because you missed another gathering, the cost of alternative supplements and the rollercoaster of waking up to that puffy, exhausted face day after day.
Hardest on your heart is the years lost holding him on the floor, mid-episode, when he couldn’t tell you why he felt so bad but that he was ‘oh so sorry’ for screaming. Another playdate missed.
You’ll know how much it hurts that you can’t fix it.
If this is you, then I know you will be more interested in telling me the triumphs. The day your non-verbal 4-year-old began speaking. How Mr 7 can now eat diary without a hospital trip. That Miss 3 has moved on from formula to 6 foods without vomiting. I know how resilient you are, what you’ve invested and just how much you’ve sacrificed to be here.
Each of us will experience this process differently, and for me, I couldn’t do it in isolation. I’m so grateful for the encouraging cluster of conversation we share on a weekday morning in the park. And the hours of chatter online. Your honesty and empathy hold me up. And in the darker hours, at the end of a troubled day, when the results came back worse than expected, or I failed to ride a 6-year-old storm, at those times my faith takes me home to a loving God who sees every minute and holds me through it. That is truth for me.
Healing Mums, I’m glad to be one of your number. We did not arrive here by choice, but it is a badge I wear with honour to be walking with you. My prayer is that today you will feel encouraged to persist another day. That’s all we have to do.