THE BLOG

Why I Find Halloween Scary

11/26/2015 12:40 EST | Updated 11/26/2016 05:12 EST

Designing Jacob's Halloween costumes is an annual project in our house.

One year, we built a drum set around his wheelchair. Another year my husband, Andrew, constructed a race car emblazoned with a Ferrari logo. And this year, Jacob went as a Jake in the Box. It was a family venture: I came up with the idea, vetted it by Jacob, Andrew built it and Jacob's twin cousins and twin sisters spent hours painting it in our garage.

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Last year instead of trick or treating with his sisters, Jacob spent the evening at a pediatric after-hours walk-in clinic, waiting for confirmation that the blisters on his tonsils were strep throat. We expected that the antibiotics would kick in by the morning and within a few days, Jake would be much better. That's what had always happened in the past.

But this illness was not going to be cured with a simple dose of Amoxicillan.

By the end of the weekend, he wasn't better. Jacob was struggling to breathe. His little body working really hard to suck air into his lungs and he sounded like he was gargling. This hadn't happened before so we didn't have supplemental oxygen or medication to assist him. Suctioning didn't seem to help clear his airway and his colour dipped into an unhealthy grey-blue shade.

Not one to panic easily, I knew Jake needed to be evaluated at the hospital. Since Andrew was in Europe on a business trip, and my daughters' school was on the way to Sick Kids hospital, I decided to drop the girls off at school and continue downtown with Jake.

As we neared my daughters' school, Jacob's breathing became increasingly laboured. His colour worsened and his heart rate was alarmingly high. Jake's sisters were scared, one of them had her fingers in her ears to block out the sounds he was making. When we pulled up to the school, I scanned the parking lot to see if any doctor-parent was dropping off their child at the same time. I was trying to decide whether to pull over and call 911 or continue driving downtown.

Sierra and Jamie reluctantly got out of the car so I could rush their brother to the hospital. With a promise to call and let them know how Jake is once he was evaluated, I sped off. Still unsure whether I was making the right decision to continue to the hospital instead of waiting for an ambulance, I drove as quickly as I could, while keeping an eye on my son, trying to reassure him that he would be ok.

Fear screamed from his eyes, and I'm sure it was mirrored in my own.

I remember the tightness in my chest, feeling my heart beat against my rib-cage, my breathing fast and shallow as I kept debating whether I was doing the right thing by not calling 911. I reasoned that I would get to the hospital faster than an ambulance would get to us. I know I arrived at the ER and Jake was still struggling. I remember being seen immediately by a doctor, an oxygen mask fitted to my son's face while the nurse asked me the standard intake questions.

The rest of the day is a blur in my mind. I know that Jake was admitted to the hospital, an iv was inserted and stronger antibiotics were started. I don't remember the specifics of that day, only that I did send a message to my daughters as promised and arranged for them to get a ride home from school with a friend's mother.

I will always remember the following morning, my back sore from a virtually sleepless night by Jake's bedside, my eyeballs dry and sore when I had to press the emergency call button because Jacob wasn't breathing properly. Within moments, a slew of yellow gowns (doctors, nurses and respiratory therapists wearing the protective garb required before entering a patient's room who is isolation with an unknown, potentially contagious illness) appeared, a mask was placed over his face and someone squeezed the balloon of air into his throat, calmly telling me she was "going to call a code".

Jacob ended up in the intensive care unit for 12 days, in the hospital for a total of 33 days. When he was discharged, he was dependent on oxygen at times for his laboured breathing. Six weeks later, Jake was readmitted for another respiratory illness and spent a total of 237 days in the hospital over the past year.

To me, Halloween 2014 marked the beginning of Jacob's deteriorating health. As the end of October neared this year, I was scared. I couldn't help but remember Halloween 2014 and the year that followed. As much fun as the holiday is for most people, I dreaded it. I was nervous for Jake and for our family.

Jake had a great costume ready, and our goal was to go out trick-or-treating with some friends. But I wasn't sure if my son would have the stamina to manage the outing. Jacob is a party-person and not one to miss a chance to be with people, but like so many things in his life, it wasn't going to be easy.

The original plan was to go to a friend's house a couple of blocks away for dinner prior to the evening quest for candy. As we were getting ready to leave our house, Jacob wasn't ready to go. His breathing was not good, and he needed a lot of suctioning. Every time we tried to put him in his wheelchair, his body was working too hard to breathe and he needed to lie down.

Our plan B was set in motion. Andrew and I decided to take Sierra and Jamie as planned, leave Jacob at home to rest with two nurses by his side in the hopes that more suctioning and some time would help him gather some strength.

When the girls were getting ready for the main event of the evening with their friends, Andrew walked home to get Jacob so we could all go out together.

As I exited the house and made my way to the sidewalk, I was greeted by my smiling son, all dressed in his costume and ready for trick-or-treating. Not only did he come out with his sisters, he insisted on staying out as long as they did.