By car, his school is about a twenty-minute drive away. Add another pick up or two and that time can easily double.

Last school year he had a super bus driver and a reasonable 40-minute commute.

I was hoping for the same route and driver this year, but late on Friday afternoon before the long weekend ahead of the start of school, I found out Sebastian would have to ride the bus for nearly an hour each way, extending his school day by almost two hours.

For a kid with cerebral palsy and seizure disorder, that extra time makes a big difference.

Anxiety set in, as I now had to worry about him having seizures from exhaustion. Worse, having them on the bus without anyone noticing.

Would he even be able to go to school every day? Would he be so tired from the ride that the next day it would be difficult for him to learn?

Sebastian isn’t a napper, even when he’s exhausted, so I knew he wouldn’t fall asleep on the bus.

Riding the bus for him isn’t the same as it was for me when I was a kid. I grew up in the country and rode a large bus with dozens of other kids.

Even though I was one of the first and last off the bus each day, I had loads of friends to talk to. It was social.

For Sebastian, there have always been only one or two other kids on the bus, each secured in their own specific seating; which for Sebastian is his wheelchair.

He also requires assistance for communication, so it’s not as though he’s enjoying extra social time. But what he is enjoying is some independence.

The new bus route making me feel again that sense of discrimination and frustration settle in to the pit of my stomach at the lack of real inclusion in our school system.

The frustration for me runs deeper than an extended bus ride. Why can’t my kids go to school together?

We live across the street from our neighbourhood school, which my daughter is attending for the first time this year. I walk her across 45 minutes after Sebastian has gotten on the bus.

Gone are our mornings of doing jokes together for him to share with his switch. Will our breakfast routine change too?

Sebastian’s dad works late in the evenings so we have family breakfasts compared to family dinners. Will I even have time to eat before he gets on the bus?

On the first day of school Sebastian has a few seizures and isn’t well enough to go to school.

He’s happy to take his sister across the street to her new school and pick her up again later that morning for lunch at home with us. My daughter can come home for lunch. Sebastian wishes he could too.

Day two and Sebastian is good to go. All smiles, which only alleviates a little of my anxiety. Will he be able to eat all of his breakfast? Will I get his meds and bag packed in time?

Will I remember to brush his teeth, have time to clean out his feeding bag from his g-tube, and put on his AFOs and hand splints before the bus arrives?

Messages, notes, assistive devices all packed the night before, no time to review the joke from two nights ago.

Mentally ticking off the list while feeding him breakfast, packing his lunch, and watching the clock.

Listening for the beeping of his bus as it backs up into place and turns on the flashing lights, hoping drivers will be patient enough not to pass, as required by law.

At the end of the school day, I walk over to pick up my daughter and then wait another 40 minutes for Sebastian’s bus to drop him home. When it arrives, he’s exhausted.

More seizures on day three but he manages a half day at school and I pick him up early. He stays home on day four.

How is this going to be work all year? Should I take him to and from school to keep him healthy, at the cost of his independence?

We call it soccer in Canada but my husband still calls it football.

And Sebastian loves to watch it.

I was never sure if he would enjoy watching sports because I thought he would never play them.

But he loves watching all of them, basketball, soccer, American football.

Always with his dad.

And as it turns out, he plays one too.

Every week Sebastian plays in an all abilities soccer league with his younger sister.

When Sebastian was still in pre-school one of his teachers set him up to kick goals during playtime outside.

At first she would hold him up under his arms so he could kick the ball to the goal. The other three year olds would cheer him on and run up and say ‘you are great at making goals Sebastian.’

Once he got his Kidwalk walker; he started kicking those goals independently.

I loved seeing the photos of their play time at school and hearing the stories.

I was so thankful he went to an integrated preschool so he could have these opportunities.

I never imagined he would play in a league or on a team.

When he was 5 he moved up to another school, and while it wasn’t integrated with typical kids, he still had gym time and the opportunity to play games with kids of different abilities.

Sebastian had an amazing gym teacher who came up to me after school one day and told me how he had kicked the oversized beach ball all the way across the gym during class.

He had been so happy and so proud of himself.

Sebastian was playing soccer and he loved it.

We did our best to play with him outside during the warmer months, going for walks to the open space across the street and kicking the ball.

He needed one of us to steer him in his Kidwalk and sometimes encourage him, especially when he got tired.

He also needed a flat, hard surface, so playing on a football pitch wasn’t possible.

We found out about an all abilities soccer group meeting at the facility where his school was, in the same gym, on Sunday afternoons.

It was right during his lunch time but we decided to try it out.

Once we did, there was no looking back.

He was in love with the game and we were in love with him playing it.

He has a volunteer that helps him steer and encourages him so we can sit on the sidelines and cheer him on.

There are skills the kids work on for most of the session and at the end they play a friendly match.

I love watching his sister run over to check on him or even better, try to block one of his balls from the goal.

Sibling rivalry.

The kids pass each other the ball and cheer each other on.

It takes Sebastian triple the time to get to one side of the gym to the other so he can’t participate fully in the game.

But the kids always pass the ball to him to make a goal at least once and his smile is priceless.

The independence and camaraderie Sebastian feels during the hour he’s playing soccer means so much to me and even more to him.

This summer we were invited to play in a league outside in a nearby park, by the same teacher that had introduced soccer to Sebastian over four years ago.

Uncertain about the grass, we helped him navigate the terrain to the goal and he practiced his kicks and foot skills with a friend that used to share his bus route, so excited to see him and so full of enthusiasm.

They took turns cheering each other on; her with words of excitement and he with vocalizations and smiles.

The sun setting behind them, both accessing the football in their own way, he in his walker and her in her Upsee, they were out there in a local park, just playing soccer.

Everyone tells me you aren’t the right size. Below this percentile. Not quite to that one.

You love to eat. But it’s a challenge for you and you burn a lot of calories doing it. It took me too long to accept that you needed a gtube to thrive. You needed a gtube to keep you going when you were too sick or too tired to eat. You needed it to help you grow.

I was afraid of something that ultimately made your life so much easier and gave your body so much more energy.

Every time you get sick I am so thankful for that gtube. And I’m certain you also get sick less often because you have it. You have those extra calories to fight those nasty bugs.

When you can’t fight those germs off, I can make sure you still get your meds and the food/hydration you need to keep you out of the hospital for dehydration.

And your teeth! They love me for it. Those resident dentists in the early days thought your cavities were from nursing before bed, ha! Try several medications laced with sugar several times a day. Try severe acid reflux several times a day. Both of which have dissipated due to not just gtube feeding, but eating a healthy, organic, blended diet. *

As with everything new, tube feeding was a learning curve.

It took a few years even to get into the blended diet. It was scary.

There was no one to support me aside from online forums and a super book, Complete Tube Feeding, I got the BlendTech mixer well before we started using it for blends. I even made oral blends before tube blends.

I was afraid. Afraid something would get stuck. And one evening it did.

I had figured out a way to get Sebastian’s blend through the pump rather than just via syringe.

The pump administers the food at an even pace which is helpful in avoiding reflux for him. It still gets stuck and I have to fiddle with it but once I do it flows through. Except this time it didn’t.

It was either hemp powder or ground flax seeds that did it. I had just changed Sebastian’s mic-key button two days earlier. Those things aren’t cheap. I had to do it again. Luckily I always have a spare, just in case.

So I popped the tube out and I saw that tiny speck stuck and no warm water syringe would clear it. No soda water available either. I switched the mic-key button out and finished giving him his bedtime meds.

After he was asleep I fiddled with the button some more; more warm water flushes and some massaging of the tube. Finally I was able to clear it.

Because that’s what we resourceful mums do. We don’t give up.

Sebastian still has reflux. I try to slowly increase his tube feeds but he loves to eat to (soft puréed foods).

Doctors still tell me he doesn’t weigh enough. I know this. But his legs continue to get longer. I know he’s growing. I also know he will never be the size his age says he is.

I never tell people how much he weighs because it would shock them. But he’s healthy, and the gtube helps keep him even healthier.

I remember the week before his gtube surgery I would massage lotion over his tummy after his bath. I did the ‘I love you’ massage to help move his air through his tummy because it can be so painful for him sometimes.

I remember thinking this tummy will never be smooth or without scars again. It will be changed forever.

It was hard to accept that then. Now I wouldn’t have it any other way.

It’s a battle scar well worn, just like my own stretch marks from birthing two children.

The scar tissue on his brain causes little electric charges in his brain that sometimes become seizures. Some months he has a cluster of seizures, though very short ones, never fun.

Sebastian had an EEG in March 2016 with his (then) new neurologist (who is amazing).

I learned that his seizures are local, not global, and they move all over the place.

Sometimes in his left side and sometimes on his right. This means that they don’t interfere with his learning or his ability to interact with others/the world around him.

This made my heart happy. His medication helps keep the seizures regulated and so we do have periods of a 1-3 months where we don’t see seizures. Sometimes he has them at night, which is super scary since we don’t know until we get him in the morning and there is a large pool of drool/drool stain on his pillow.

We start to feel comfortable during the quiet period. But the seizures always jolt us because no matter how many we have seen, they get you every time.

It was dinner time and we were telling daddy about meeting a boy in the museum cafeteria today. We talked about how you both loved the bat cave and then we saw him coming out just after us later in the afternoon.

Your right arm went up in what I thought was excitement and then I noticed the twitching. I looked into your eyes and you could still see me but you couldn’t respond.

As your arm twitched I fumbled to get my phone to time your seizure. Thankfully you didn’t have any food in your mouth.

These new epilepsy apps allow me to video the seizures.

Your dad grabbed your hand and your little sister played in the background, oblivious to your seizure.

I was thankful for this. I stared at you through the lens of my camera and reached out my left hand to steady your twitches, but also feeling them so I’d know when your seizure had finished.

It felt awful and strange to watch you through a lens. To be videotaping your seizure like some home movie. I let go of your elbow in case I would mask what your body was doing.

It fell limp and your body let out a sigh at 48 seconds. I added another 10 seconds in the app since I’d started the video late and I wanted to make sure we had recorded the entire event accurately.

Emergency measures happen at 5 minutes. Ativan between your cheek and gums.

Then you turn into a zombie for a day or so.

Thankfully we haven’t had one that long since your seizures officially started the summer of 2010. But we’ve had to use the Ativan to ward off seizures too, when you’e been sick and had days without sleep.

I don’t like to do that anymore after seeing you so spaced out for so long. I wasn’t surprised about this seizure, though I thought it would have come sooner, since you were recently ill with strep throat and had many sleepless nights.

I suppose we can guess when they are coming but only your body really knows.

We are 6.5 years in to this epilepsy thing. Your medications manage your seizures for the most part.

Your last ones being in November. Watching your seizures makes me feel completely helpless. There is nothing I can do. Monitoring the time to make sure we stay in the safe zone. I want to be able to do something and I’m afraid of the time I’m not there when you really need me to do something.

So I decided to find you a dog.

We knew you loved dogs after your first brief stay in hospital when you were just 2. You hadn’t smiled in a week and you perked up only when the hospital therapy dog came in for a visit.

Fast forward to over 6 years later and you are eagerly awaiting your very own service dog, Ewok, to come live with us. Hopefully he will be able to let us know when you are having seizures too.

There are a lot of things I wish you could tell me.

What do seizures feel like for you? How does your medicine make you feel? Are you happy to be on your medicine even if it makes the world cloudy or your tummy hurt sometimes? How tired do you feel after a seizure? Is there something you wish I would do to help you feel better afterwards? Do you still feel tired the next day?

Some of these I can guess or even know and understand a little bit just by knowing you.

I talk to adults with seizures to gain some perspective. I hope that with the aide of your eye-gaze you’ll be able to help me understand more. I am super diligent in your time clock, making sure you get the sleep you need and trying to keep you as healthy as I can.

But we can’t live in a bubble and sometimes we like to stay up to watch the sunset in the summer time.

Soon I will sleep a little better because Ewok will watch over you while you sleep. Regardless of whether he will detect your seizures, he’ll be there to calm you and get us if you need help. Your seizures will always be a part of you.

We won’t allow them to keep you from enjoying your life, they just require us to make a few adjustments.

Sebastian’s first flight was a short jaunt from London to Zurich. From the beginning he was an easy flier.

We wanted to try it out before flying to Cairo but nothing could prepare us for all the doctors on board being summoned to our seats to see if we needed help for Sebastian who sounded like he was having trouble breathing due to his strider and strained cry.

All of this before asking if we needed assistance!

After that first long haul flight there were many more, some on my own.

A mom on her own traveling with an infant always gets plenty of positive attention as the flight attendants were nearby to help as needed.

Of course I was protective and rarely let someone hold him since he needed a bit more support than your typical baby.

Nursing helped stopped a lot of tears and unwanted doctors showing up at our seats during later flights too.

As a baby we used a carrier to travel with Sebastian and thankfully we lived in Cairo for his first two years where a car seat was not required in taxis and when we travelled elsewhere it was by train or plane.

Sebastian’s reflux caused him extreme unhappiness whenever in a car seat since his head control wasn’t strong enough to sit up straight.

This meant he wasn’t ready for a stroller for some time either which made travelling easier, one less piece of equipment to fold and lug aroud.

Though once he was eating solids he needed to be upright and a stroller was used as a stand-in for a high chair since he couldn’t sit up in the simple restaurant highchairs.

We did lose a wheel on his stroller on a flight from Cairo to Dubai once and had to spend a day shopping for a new stroller which was only partially reimbursed.

But one can only argue with Egyptian Air officials for so long.

Fast forward to school age when Sebastian is outgrowing his carrier, stroller, and high chair but still needs support for all daily activities.

Sebastian got his Red Racer just before his 3rd birthday. When we chose the Zippie Iris with tilt we chose a model that would break down (into pieces for easy travel) as well as withstand a rougher terrain.

We wanted to be able to take it hiking as well as into a car and onto a plane.

Our first trip by plane with the Red Racer (that’s what we call Sebastian’s wheelchair) was from Toronto to London, non-stop. I write extensively about our trip here, but will aim to summarize with a few basic tips below.

Travelling with a wheelchair:

1. Break it down as small as possible. Put all of the removable parts into one or two large Ikea shopping bags. This will include footplates, head rest, seat back and bottom. I later learned we could have also removed our wheels, but I don’t think it’s necessary. Take the Ikea bag on board and the flight attendant will store it for you.

2. Fold anything down which doesn’t detach, for us it was the back and handle bars.

3. Lock moveable pieces in place. I used plastic locking strips to hold the back bars from moving from the base of the chair. This did prove to be an issue on landing when the flight attendants had to find something to cut them off due to restrictions for such items like scissors on board.

4. Attach a laminated photo on card stock of your child in the wheelchair with a very short hello message.

This humanizes the chair and reminds those moving it that it is an important piece of equipment which allows the user independence and the ability to do simple activities for daily living.

Two men who transported Sebastian’s chair below the plane thanked me for attaching the note.

5. The chair base will be waiting for you just as a stroller would as soon as you disembark. We chose to be the last off so we had space to put the chair back together as well as remove the car seat from the plane.

6. Car seat: if your child cannot sit up independently as Sebastian cannot, a car seat is a must for the plane.

It must be airline approved and will have a sticker somewhere on it that says so. Airlines do not approve any other seating.

Depending on the airline and the size of the seats it can be very tricky to get in but not impossible!

I recommend bringing a very simple/compact car seat style. Obviously the weight and size of your child will also come into play.

Sebastian still fits in a forward facing car seat.

Many of them hold up to 65/70lbs. Sebastian is nowhere near that. Even at almost 6 years old.

7. Accessories: Bring a small, foldable stroller if your child fits in one for places you may have issues with accessibility.

(We were also travelling with a baby so we could take it on board for her free of charge. Otherwise you check it with your luggage.) This was necessary for us when travelling in London.

When Sebastian was in his wheelchair we needed to take buses everywhere. This added a lot of time to our trips.

For tube and even train travel, we found it easier to bring his stroller, though next time that won’t be an option because he’s grown out of it.

We also have a new hiking carrier ready to try out for really off-road travel. We also bring noise cancelling earphones for underground travel and airplane take off.

Travelling with medicine by plane:

Sebastian also has epilepsy so we need to travel with his regular medication as well as emergency medication should he have a seizure lasting more than 5 minutes.

If you are travelling with any kind of medication, make sure you get a form from the airline for your doctor to fill out which states the needs of your child, including physical, nutritional, and medical.

This will make any accommodation requests possible. It is also wise to have your child’s specialty doctor, such as a neurologist, to draft and sign a letter in regards to travelling with medication, listing each in the letter.

With a major air travel experience under our belt we decided next to go on a road trip into Quebec from Toronto.

This time we also had the added task of making sure there were accommodations for Sebastian’s G-tube along the way as well as fully/partially accessible places to stay, eat, and tour.

We hired a mini-van for the drive and found using the wheelchair was very accessible throughout Quebec.

Though we still used to stroller for hotter, city explorations, the metro in Montreal and around the walled area of Quebec City. When you have wheels, you are always looking for ramps and disappointed to see stairs.

Traveling with a G-tube

1. Contact accommodation to find out if there is a small fridge in the room or if we can have access to the main fridge (such as when staying in a bed and breakfast or guest house versus a hotel).

We also chose to stay in short-term apartment accommodation (Airbnb rentals) and wanted to be able to make dinner or get take out and eat where we were staying.

This made a huge difference in ease of making sure we could prepare Sebastian’s food and formula for eating and for his tube feedings as well as have the ability to clean everything with ease.

2. Have a day pack with everything needed for a meal/tube feed on the go. Including a small jar of dish soap for rinsing feeding bags.

We have cleaned Sebastian’s bag in many restaurants while on the road.

And we’ve also tossed a few without reusing them because it was just easier or more sanitary.

We also have a travel bag with cold packs in it and a thermos for keeping food warm. I purchased a small, plastic, portable food masher to enable us to mash up food when out to eat so he can eat from the menu as well. He had a lot of spaghetti!

3.We haven’t experienced travel by plane with the tube yet so I can’t say but I definitely plan to notify the airline to find out what they allow in regards to liquids, batteries in his pump, etc.

I will get the doctor’s note to cover everything he needs. Just to be safe.

My husband and I are world travellers.

We met on a remote island off Malaysia. We have travelled in many countries and lived in half as many.

We have a strong desire to travel and expose our children to the world and a variety of diverse cultures, places, and experiences. Living abroad is no longer realistic due to Sebastian’s current educational, physical and health needs.

Travelling abroad is complicated. But it is not impossible. We want our son to be a part of the world around him. He can only do that if we take him. And take him, we will.

Next stop: Belfast.

Memory 1

We are sitting in a bright room around a long rectangle table. My mom is on one side of me and my husband, Ali, is on the other. I’ve been in a room like this before. Where doctors take you to tell you their news in private. The last time was when my brother, Josh, died. This time there was a big file on the table in front of our doctor. 

A file that large for a baby so young. My baby. He probably talked about the notes in the file. I don’t remember.

I only remember the words ‘cerebral palsy’.

We walked out, arms around each other. Shocked. Almost unfeeling.

We said nothing but went to the sink to wash our hands again before going into the room where our son was sleeping, still hooked up to machines, though far fewer than in the beginning.

He was moving from the NICU to the SCIBU (Special Care Intensive Baby Unit).

A graduation of sorts. A milestone not found in your ‘What to Expect when You’re Expecting’ bible.

Memory 2

It is dark. Ali and I are sitting on the bunk next to Sebastian’s cot in the SCIBU. We are facing each other. I’m imagining a severely disabled child in a huge, oversized wheelchair.

An image likely taken from some movie or ad. Not from a real life reference. Because I didn’t know anyone in a wheelchair. I didn’t know anyone with cerebral palsy. We are looking at each other.

He says incredulously ‘Cerebral palsy? What does they even mean?’ We embrace and both start crying. ‘I don’t know,’ I say, with that image in my mind. ‘I don’t know.’

Although we knew before leaving the hospital Sebastian may have cerebral palsy, we didn’t have an official diagnosis until he was 3 months old.

At 5 months old we had the specific diagnosis of dystonic CP. At 10 months old we told the world about it. That was our first step towards acceptance.

I’m not one to routinely dole out advice. But I will tell you a few things that work for us. Keep us sane, happy, and in love. With ourselves, each other and our family.

–Take time to grieve. Know that it can come in waves. It’s OK. Things are not what you imagined they would be. It will take time. But don’t stay here too long. Help each other move forward.

–Have a sense of humour. At least one of you needs it. For us, it is my husband. He makes me laugh, even when I don’t want to. He finds the humour in a situation that doesn’t seem to have one. Sometimes it’s for me.

But really, I think it’s mostly for him.

–Listen to each other. Whether it’s about a new diagnosis (there are always more after the first one), how your day went, or even the score of the basketball game.

Being available to listen is huge. Whether it’s a five-minute phone call at work to vent or a twenty-minute discussion after the kids are in bed about something happening at school or in the office, or wherever.

It validates your feelings and supports your team effort at tackling anything and everything.

–Go out. Together. Alone. With friends. This can be tough. You might not have family or someone else you trust nearby to watch your kiddo while you have a date night.

Until you do, have date night at home. Treat yourselves to takeout and a new movie rental. Have an impromptu dance party in the living room.

Invite friends over after the kids are in bed.  Making sure you both get out for ‘you’ time is huge too.

However often repeated, it’s very true: if you don’t take care of yourself, how will you take care of your child?

–Have an outlet. Whether it’s writing or playing basketball. Watching movies, comedy sitcoms, or sports games. Sewing quilts or cardio with a punching bag. Do something to take a break from your reality. Enhance your reality. Find a way to channel your emotions. Good and bad. Happy and sad.

–Go on an adventure. Or a holiday. If the funds aren’t there to get out of town then explore your city or take a day trip.

It might take some extra planning depending on your child’s needs, but it will be worth it.

–Talk to other families with children whose diagnoses are similar to your child’s. Share that information with each other. Some of my closest friends are those I’ve only met once or online who have first born sons with similar birth stories and diagnoses. In the early days, it saved me. And I’m pretty sure that saved my husband.

–Acceptance. It’s possible you won’t get there together. But it’s important to get there. It’s the only way to move forward.

Our son has mixed/dystonic cerebral palsy. It affects his entire body.

Severely.

He cannot walk or talk. He will always have cerebral palsy. Because of cerebral palsy he has epilepsy and reflux.

More recently his hips are moving out of place. He also has a g-tube and takes several medications. Sebastian is five and a half. He loves his little sister and laughs at her all the time because she is very silly.

He wants a pet dog and loves reading books and playing Go Fish with his family.

He loves dance parties and prefers speed to caution when in his Red Racer (wheelchair).

He has his dad’s sense of humour and my sense of adventure.

He’s an awesome big brother. He’s learning how to go potty on his special toilet which encourages his little sister to do it too.

He has inch-stones and milestones in his own time.

We love him fiercely. We accept him for who he is and we include him in everything. Are there modifications? Yes. But we still go places and enjoy life.

We make it happen. One day at a time.