Rachel Cunliffe – Rachel Cunliffe

Dear friend,

Many things are best done in person. If I could, I would come and sit with you wherever you are right now.

Maybe you’re reading or listening to this while in the hospital. You’ve been half-sleeping in an uncomfortable pull-down hospital bed for days. Your sleep has been disturbed by beeps from the drip and nurses taking their observations. You’ve been up and down, calming your child.

Perhaps you have ended up lying right next to them in the same bed, listening to them softly breathe in and out while you’re mindlessly scrolling through Facebook at 3:45 AM, knowing the next observation is in fifteen minutes, so what is the point of trying to sleep?

Or maybe you are at home again after a hospital stay. You’re trying to recover and make sense of what just actually happened. You say you’re exhausted, but wish there was a better word to describe how you feel. It doesn’t even feel like you have done a whole lot today except make it through.

I’d start by saying, “Hi, I’m Rachel.”

I’d give you a hug. Maybe I’d hold your hand. A friend did this for me once after a car accident. I was in shock and it felt so, so good and calming.

I’d say, “This is awful.”

“How are you doing today?”

Then I’d stop, wait, and listen.

It wouldn’t feel uncomfortable. This thing has a way of changing us both to become more comfortable with talking about normally uncomfortable topics.

I suspect you too are getting better at talking about hard things. We’re no longer afraid of talking about cancer or asking questions. We have to. We have no choice.

I’d want to hear your story. Not the rushed one that explains the diagnosis and prognosis and skims along the surface, but the one which is sitting heavily in your heart. The one you’re processing every single day in some way.

We would go back to how you found out. We would cover the scenes which replay over and over in your mind. The things you lie awake wondering about as to the cause of it all.

You’d tell me about the people who have been amazingly generous to you. How surprising it is when they’re acquaintances you’d barely been in touch with for years. At some point, you’d tell me about the people you’ve fallen out with, in both small and spectacular ways, and why. The things which make you cry. The stupid things people say which quietly drive you crazy.

Then you would pause and slow down to tell me about your sweet child. The horrible pain they’re going through, the things they scream out in anger, the endless fights over taking their meds, the heavy words that spill out through tears, all the things you never imagined someone could go through. The almost unbearable anguish you feel watching their suffering, wishing you could take it all away. The ridiculous unfairness of it all.

We’d talk about the phase of treatment your child is currently in, the side effects you’re doing your best to manage, and your fears.

All the things you were meant to be doing this year but aren’t anymore. How your priorities permanently shifted in their foundations in that jolting earthquake moment.

We’d swap notes about the trashy Netflix shows we watch to pass the time in the hospital in mutual understanding that the mindless escapism for those few minutes matters.

I’d tell you about how I’m so sick of cooking sausages and bacon, and you’d smile and understand what high dose steroids do to an appetite.

Cancer isn’t completely mysterious anymore, is it? Friend, I wish it was not our new normal. The thing we cannot escape, woven into each day.

You’re adjusting. You’ve never done this before.

There’s a meme that has been floating around the internet in various forms for a few years that has stuck in my mind. It’s for parents of kids with special needs. Paraphrasing it for us, it would go like this:

A parent of a child with cancer fell into a hole.

Doctor: Can you keep a diary of your experience in the hole?

Local authority: Sorry, we don’t have enough money for a ladder.

Charity: Here’s a form. Fill it out to get on a waiting list for a ladder.

Family member: What hole?

Another parent of a child with cancer: I’m here! I’m on my way down! I’ve been there before. I know how to get out, and I won’t let you do it alone.

This is the truth. You are not unseen.

We can do hard things.

I’m reminded of one of my kids’ favorite books called We’re Going on a Bear Hunt:

We can’t go over it.
We can’t go under it.
Oh no! We’ve got to go through it!

You are doing an amazing job holding this all together. You have made it through another hour.

Your tears matter. You matter.

You are stepping into a level of parenthood that most are never called to. You’re carrying this weight for your child and that is powerful beyond measure.

There will be a day when you realize that you’ve made camp and settled. You’ve found a new home in this new parallel universe. You’ll be surrounded by people who are real and have stayed in the messy places with you along the way. There will be space for you to heal from this trauma. You’ll feel freedom and openness and joy again. You’ll learn so much from your child about being truly present in the moment and enjoying simple pleasures.

After this visit together that I so wish could be in person right now, when I stood up to say goodbye, I’d want for you to feel a little less alone and have a little more strength to get through the next hour.

I now want to leave you with the rest of the words in this book. It’s often said that this is a marathon, not a sprint. These are the things I’ve learned from it.

With love infused into every line,
Rachel

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After your child is diagnosed with leukemia

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.

They help.

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.