Does MY Life as I know it end?

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You know your friend who’s child is always really sick? At the hospital every week? You should never stop making time to visit. Like you did when the baby was born and you wanted to visited them right away, or that first time they visited ICU?

I know they are there all the time, but it never stopped being a scary place, where they have to watch their child go through things that no child should ever have to experience.

Where they run tests, scans and trial things over and over, when some days bad new is NEWS, which brings relief – any news is better than knowing nothing, time after time after time.

My child died 4 weeks ago, from a complex and rare condition that saw him in hospital for about 50% of the time.

Since he passed away I have visited my friends in hospital 3 times. Yes, once a week I visit them. When I mention this to my GP or one of our palliative care nurses or even some friends with medical training, they say “You’ll wean yourself off that eventually though? Fill your empty time with things involving the other children maybe?”

The short answer is, “I don’t know.”

But right now, I can’t see that happening.
My beautiful friend Kat Barlow who founded Flexible Freedom, penned an adaption of the poem “Welcome to Holland.

If you know the poem, “Welcome to Holland” it compares planning a holiday to Italy, packing and getting onto a plane only to arrive in Holland. This is compared to planning to have a typical child and finding along the way that your child has a disability or difference.
Then you find as you live in Holland that actually it isn’t so bad, the people that you meet are lovely, and while it isn’t Italy, it’s going to be okay.

Well my friend heard this and said to herself (and knowing her, anyone within earshot.)
“Holland?!! You’ve got to be kidding me, this isn’t Holland, this is f***ing outer space!”

Somewhere along the journey she wrote what I call, “Welcome too….wait, where are we going?”

This begins by boarding the plane to Italy or Holland, but finding yourself thrust back into your seat and pointing straight up, you’re not even on a PLANE! It’s a rocket.

You find yourself living on a space station, where the aliens speak a strange language.

Well for me I’m living in life after the space station. I speak the language of the aliens fluently. Most of my closest friends are other astronauts, parent’s of other little spacemen and spacewomen.

I know the isolation of building your life around the space station. No freedom to come and go as you wish. No ability to have play dates back on earth whenever you wish.

Five years in a world where you have to plan so you can act as soon as a gap appears.

You’re home from hospital after 10 days. The symptoms haven’t completely subsided but they are strong enough that you’re fairly certain that it won’t get worse again – like fairly, maybe, sort of, certain.

Your other children are desperate to get some of your attention. You have new medications and feed regime to sort out, and trying not forget anything. You have that important family event, that has been in the calendar for months. It will take you 45 to 90 minutes to get ready just to leave the house.

You’ve got a couple of bills to pay, they completely slipped your mind while you were in hospital.

But, you take a deep breath, you’ve got an afternoon free tomorrow (if nothing changes) so you message those friends who said,

“We should catch up, the kids can have a play date.”

Maybe just maybe you can sit with another normal adult outside of the hospital and have a normal conversation.

“Nope. Definitely not.”

They’ve already got plans. They offer something weeks from now.

It hurts, for yourself and your kids. You know that weeks from now you have no control over what is happening and your child will probably be sick in hospital again. Maybe even fighting for life.

The window passes, now you have no idea when you’ll be able to let your kids have a normal play date.

Time passes you’re back in hospital. Someone texts; “Were we going to catch-up today?” (From a conversation weeks ago.) “You could come over, we could go to the park.”

I would think, calculated and evaluate. If I go there, I will spend an hour or more getting there and again coming back. The kids will be way overdue for dinner and then it’s bedtime. I would get to spend one hour with Matthew between running around and meals with the other kids.

Is an hour enough to speak to the nurses, the paed, the pal care doctor, the specialist for that thing that we’ve been waiting to see them about for 5 days about?

No. It simply can’t be done.

Without me, Matthew’s pain cues wouldn’t be picked up as quickly, maybe even missed.

The specialist will be off the hook for another day. The nurse won’t think to mention to the paed that he hasn’t had a bowel motion in a week. Which could land him in ICU.

So I reply,

“We’re in hospital again, you guys should come and check out the playground here, and the starlight room. There are so many things the kids love to do.”

Almost every time the reply would come “I’m sorry to hear that, let us know if there is anything we can do. We can’t come in, later on I’ve got to buy new socks. When you’re home let us know.”

Then when you couldn’t feel more isolated and alone, thinking something like, “I wish I had time to go buy new socks.”

A face would appear in the doorway, another Mum with a child or two in two.

“We had appointments downstairs we’ve only got a few minutes.”

So for those few minutes you would feel normal, talking with another non-alien.

Any observer would quickly see that you speak both the alien language and your own as you discuss the day and the week and what the future holds. But that is as normal as it gets when you can’t plan ahead enough for others who live back on earth to find the time to visit.

So when a GP says to me the other day “You’ll stop going into the hospital for visits soon though.”

I said, “My friends are still there.”

“But can’t you see them other places? Outside the hospital?”

No, no I can’t. They still live on the space station, with no control how long they will stay.

So please, please visit them. They can’t change their plans, they can’t tell you weeks it advance what they are doing.

Better yet, if they are a family who spend a lot of time in hospital, assume they are going to be there. Plan for that. Bring chocolate. Bring coffee. Bring lunch.

Take their kids for a walk to the park so they can run around. The Royal Children’s Hospital is designed to bring children joy, if you let it.

As for me did my life as I know it end when Matthew’s body gave up on him?

Only if I let it.

I don’t know what the future holds, but I know the difference a friend’s face makes in hospital and what it means to have someone who understands what you’re living with to talk to. Even to have someone make the effort to visit. So I will continue to do what I know.

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