Caregiving, Disability, Mental Health

November 14, 2020

The Notebook: Journal of my daughter’s health crisis

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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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My mother loved to give notebooks as gifts. For birthdays and Christmas or to mark big transitions in life, my mum would write a short inscription on the first page of an often pretty floral journal and add it to a gift bag, a stocking or even inside my suitcase. I have a collection of these little notebooks all around my house, and to be honest, many of them are empty or just have some random scribblings in them. A few of the notebooks, however, now contain copious medical notes documenting my daughter’s 8-month hospitalization from January to August 2017.

I’m going to share some of the words I poured into these notebooks during the first weeks of my daughter’s health crisis. I don’t remember what occasion I received this one for, but whatever it was, I was supposed to “have fun”.

I wrote this first entry on January 9, 2017 while sitting in Katie’s room in the PICU at McMaster Children’s Hospital. My 9 year old daughter was in a deep coma with a drain in her brain to relieve the pressure in her skull and connected to a ventilator because she could not breathe on her own. I was recalling what had happened 4 days previous.

Well, I didn’t know I’d be using this little journal to document such a terrifying event, but it turns out, I am.

It’s January 5, 2017, about 5:32 pm. I’ve called 911. Katie was losing consciousness in the back of our minivan after suddenly crying out and complaining of a sharp pain in her head. Alex and Katie and I are in a Tim Horton’s parking lot. It’s very cold and I’m terrified. Katie can’t focus on me and she can’t speak. Alex is crying and I try to calm him down, but now I’m crying too.

I talk to the 911 dispatcher for 9 minutes before the fire department arrives. Katie is sweating so I unzip her coat. She’s losing muscle control and I’m holding up her head with my hands. I call her name and she tries to look at me, but her eyes roll into the back of her head. The firefighters arrive and give oxygen. Then the ambulance arrives. Questions fly at me. Does she have allergies? Has she taken any drugs? Could she have had any alcohol? Is she ill? No, no, no and no!

I call Rich still at work and Toronto, and now he’s on his way. Then I’m told that the paramedics are very concerned because Katie isn’t regulating her own breathing. They’re going to take her to the nearest hospital, Hamilton General, but only one of us can accompany her in the ambulance. Leaving Alex with the firefighters to wait for a taxi is out of the question, so I say I can drive there. I try to concentrate on my breathing and on driving. It has started to snow quite a lot now. My body is numb. Alex texts Rich to tell him where we’re going. My son is so brave. He reminds me not to speed.

We arrive at the General. The ER is full and everyone looks desperate. We are ushered into a private room where a social worker greets us. A complete sense of doom overtakes me and I ask what the hell is going on.

A doctor comes in and then takes us to see Katie. She is intubated. She couldn’t breathe. I’m so scared and think I might be sick. We’re told she’ll now be taken to McMaster, but again I’m told that there’s only room for me in the ambulance. Then I see my brother who is there to get Alex and I feel brief but welcome relief.

I ride next to Ivan, the paramedic driving the ambulance. I don’t feel like we’re driving fast but I guess we are. As we pull in, I see Rich. Some more relief, but then immediately again, fear.

There are more doctors right away when we enter the ER. A neurosurgeon has been asked not to go home. Katie is taken away for a CAT scan. My brother and Alex are there and then my sister-in-law arrives. Hugs, tears and fear. We’re in a small waiting room. When do I call my parents? What do I tell them?

A doctor comes in to give us the results of the scan. Someone thinks to take Alex out. It’s a brain bleed and it’s very large. They think it’s been caused by something called an AVM. She needs surgery immediately.

We meet the surgeon. He’s tall. He tells us he has no time to explain the details of what he is going to do. He must perform surgery “to try to save your daughter’s life”.

Those are the worst words I’ve ever heard. More fear and more tears, but there is also thankfulness that this blessed human possesses these skills and that he is here now to help our daughter. Yes! Go and save her life. Now!

Then my parents arrive. Someone has called them. More tears – sobbing.

We’re in a new waiting room now with new social workers. I don’t yell at these ones though. They bring us water and ginger ale. There are other parents who look worried, but not terrified.

On the TV, the Americans and Canadians battle for the title of Junior World Champions of hockey. Canada cares a lot, but I don’t care at all. Alex and the other dad watch the game. The rest of us worry and retreat into our deepest fears. Pillows and warm blankets arrive. It’s 9 pm, maybe 10. We’ve been told surgery will last until at least 1 am.

Banish the thoughts. Consider all possible outcomes. She’s gone—surely this is too serious, it was too late.

I open my phone and look at her pictures. I can literally feel my heart breaking. I write her a note.

                                    I need you. You’re my joy. Fight, Katie! We love you.

My friend Chuck arrives with stuff from home. How hard must this be for him? His last time in a hospital was the day he lost his mother, only months ago. More bravery.

I cocoon into myself. This is the worst. I learn that the other couple’s son has broken his femur after being thrown from a snowmobile. They’re telling my brother that his hockey season is over now for sure. I want to swap medical emergencies.

It’s almost 1:30 am. We are taken upstairs. New waiting room now. The fourth of the day. We see the surgeon and he comes to speak to us. He has the best possible news, all things considered. He thinks he was able to remove all of the bad blood vessels. He may have to go back in but that will be weeks from now. He feels good about the surgery. Her recovery will be slow, very slow.

You can feel the sudden lightness in the room. More relief, for the time being.

Over the next 8 weeks while Katie stays at McMaster, first in the pediatric intensive care unit, and then in their complex care unit, I fill this pretty floral notebook. It sits beside Katie’s bed and when medical personnel come in, whoever is in the room at that time, tries to make sense of their medical jargon so it can be documented in a way that makes sense to us. There are notes taken by Katie’s aunt who visits daily. There are some taken by my mother, a retired nurse, who is fighting her own battle with metastatic breast cancer and tries to come as often as she can, but she’s often too unwell. There is even one entry written in my dad’s shaky hand. He is also a daily visitor. But mostly they are my notes that Rich uses from time to time to type up email updates that are sent out to friends and family.

I can gauge Katie’s recovery over the years based on how many notebooks I’ve filled. I believe there are four from the first year and after that the entries decrease in frequency and I turned more to keeping records in a large binder that contains letters from doctors and therapists and letters to the three schools that Katie has attended since her stroke. But the notebooks are special.

Allie G.

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  1. Deb P. says:

    This, breaks my heart and warms it at the same time. You are one brave, amazing mama bear. Both for what you have been able to be to your daughter and family through all this…and for being open and vulnerable enough to share this very personal time in a powerful piece. Thank you <3

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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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