Here are some things I have learned after having our five-year-old son diagnosed with B-Cell ALL (leukemia). Written with love.
You’ll be in trauma mode for some time.
It’s normal and OK to find it hard to sleep, eat, and concentrate.
You’re not losing your mind: your short term memory will be shot.
Having a daily afternoon nap or walk outside helps me.
It won’t always be like this.
Ask for help with all the things.
(I’m still learning.)
Small or big, you will find generosity and support from the most surprising people in your life.
Don’t be shy about calling mental health support lines, day or night. There’s nothing wrong with you.
You’re a human going through an awful experience.
Ask for a friend to regularly check-in with you to ask how your day went. These people are gold.
You’ll be bombarded with information.
You’ll be given information about treatment, procedures, drugs, appointment dates, things to do, and not to do. And that’s just from the medical system.
Then come the social workers, charities, and support networks, all with their resources, grants, paperwork, benefits, and services.
Your friends and family will send you information about alternative treatments, new research, and diet recommendations.
It is exhausting to even think about reading it.
(And I love reading normally.)
Say thank you, file it away, and don’t feel guilty.
(Cut all sugar out of their diet? Yeah, the drugs will do that without you needing to even try.)
Focus on what you need to know for today.
Try to be kind and forgiving.
Everyone in your house will have big feelings and at different, inconvenient times.
Try to dump on someone outside your house, someone who can help keep you sane.
This thing is relentless.
Right when you’re wanting to have a relaxing weekend after an exhausting hospital stay is when the big feelings will pop up for someone else in the family.
Emergency mode first. Recovery mode next.
Both are hard.
Sometimes it’s just easier to let little things slide.
You’ve got a bigger battle to fight.
It’s weird seeing people for the first time.
There’s this particular look on their faces: a combination of horror and terror. It’s like they’ve seen a ghost and aren’t sure what to do next.
You’ll feel uncomfortable too. You’ve never seen this look on a person’s face staring at you before. It’s the stuff of movies.
It’s there for the briefest of times, then fades to a look of worry.
They don’t know what to say or do. They’re scared of doing it all wrong. They’re horrified that it’s happened to someone they know. They’re terrified to think about what if it had been them.
When a friend saw me for the first time since she’d heard the news, she burst out, “look at you!” mid-sentence. It was like she was relieved that I was still me. Maybe she had expected me to be a pile on the floor.
People say things.
There are no right words.
In the beginning, the rushing flood of messages from everyone will be a blur.
(Some may have spent a lot of time trying to craft the right thing to say, I felt bad because the words just floated past my eyes. I did, however, feel the love.)
In time, you’ll find things that people will say to you. Some of these will irritate you. You’ll know, too, that people mean well.
Most of it comes down to people wanting to acknowledge you’re going through something horrific, but do not want to know or talk about it. Or, they assume that you’re not comfortable talking about it.
This is not because they don’t care.
Many of the things they say are closed statements, not questions. These don’t open the door to discussions.
Things like, “I hope you’re good.” Or anything starting with “I hope…”
(When life isn’t easy, what can you say in response? You shut down. You say thanks and move on.)
Nurses often start a conversation by saying “Gosh, you’ve had it awful lately!” You relax and say, yes I have. Then you’re away talking, and things don’t feel quite so bad.
You’ll also hear, “It’s every parent’s worst nightmare”.
(Actually, I can think of worse things which could happen.)
Or they will say, “I can’t imagine what you’re going through”.
(Their next question is never, “Can you help me understand?”)
I hope you can find your people.
The ones who are OK with talking about hard things.
The ones who know you will always want to talk to someone who wants to listen.
This is a marathon, not a sprint.
You’ll hear this a lot and it is true.
I’ve never run a marathon. Nothing about it remotely appeals to me.
The faces of runners look anguished, their bodies and willpower pushed beyond the limits of what they imagined.
And they trained for months for this.
The people on the sidelines cheer them on while enjoying a nice day out in the sun.
But they watch.
At the finish line, the runners collapse in relief.
It is over.
A version of this article was published in The Daily Mail.
Photo: Hospital ceiling. You’ll spend a lot of time looking up at this.