Birthdays and Breathing

Sebastian was born not breathing. He was grey and floppy. But he was alive.

April is HIE Awareness month. One of Sebastian’s (many) diagnosis, subsequent to his cerebral palsy, is HIE, Grade II. Grade III is the most severe. I have never written about his HIE before. I have only added it to the list of his diagnoses on every hospital and application form I have ever had to fill out. Every form. The people who read those forms know what it is. The people who have children with HIE know what it is.

Hypoxic Ischemic Encephalopathy (HIE) is a type of brain damage that occurs when an infant’s brain doesn’t receive enough oxygen and blood. It is a dangerous condition that requires immediate medical intervention. HIE affects 20 out of every 1,000 full term births. HIE caused Sebastian’s cerebral palsy, so it’s not subsequent at all. In fact, it is the reason for his long list of diagnoses. Cerebral Palsy. Seizure Disorder. Gastro-intestinal Reflux Disorder. G-tube. Non-verbal. AAC user. Bla, bla, bla.

Sebastian’s birth was traumatic. It was not hard. It was not challenging. It was not exhausting. It was traumatic.

Okay, it was all of those things, but the most important word here is trauma. I never processed this trauma. Instead I immediately started caring for my baby. I was alone in a big city, far from ‘home’ and family. My husband was a journalist working very long hours and after his two-week paternity leave, had to return to work. I suffered extreme postpartum depression and I had no idea. We moved to Cairo. I found all the necessary therapists that I needed to before the move. I did not go back to teaching. I became a stay at home mother. I became a full-time caregiver.

I did not process the trauma. I am processing it now through (EMDR) therapy and it’s hard and it’s big and it’s life changing. I’m thankful.

Sebastian will be twelve on May 6th. I got my ears pierced when I was twelve and my dad gave me teeny-tiny diamonds to put in them. It was a milestone birthday for me. Sebastian’s twelfth birthday feels like a milestone for me too. I always celebrate Sebastian’s birthdays BIG. Because he is alive. He almost wasn’t. This year for Christmas I bought him and his dad tickets to see the Toronto Symphony Orchestra play to the backdrop of Star Wars: The Force Awakens at Roy Thomson Hall. It was supposed to be on May 9th. It was a double gift, Christmas and birthday. Which was good because those tickets were pricey! I got an email a few days ago that said this event had been postponed until May 11th. 2021. Thanks coronavirus.

How do I celebrate Sebastian’s birthday big this year? How do I bring the people together in his life that have made up the beautiful community we are now a part of? How do I soothe my soul and celebrate the life that was so hard to bring into this world? Last year we had a May the Fourth Be with You birthday party and Kylo Wren and Rey came to teach the kids how to be Jedi’s. The year before that we went bowling. Before that we had an Animal Ambassadors, they brought rescued animals to our house for the kids to learn about, hold, and pet. He had just recovered from major hip surgery. We always have coconut ice cream sandwiches or special dairy free cupcakes with outrageous toppers at school.

I celebrate birthdays BIG.

Because we are here. Sebastian is here. He’s alive. He’s thriving (his clinics that follow his weight may argue, but I assure you, numbers don’t mean everything). Sebastian loves Star Wars. He has a service dog named Ewok. He loves chocolate and ice cream. He loves cooking shows and wants to be in charge of a café menu someday. He likes to judge who prepares the best pancake bites during our Saturday morning pancake breakfasts. He loves jokes and shares them daily with his step-by-step switch or eye gaze computer. He has friends. He makes them laugh and keeps them accountable. He loves music and dance parties and basketball and soccer. He is so much more than his diagnoses, but they are also a part of his identity too. They are also a part of mine.

HIE has impacted our lives in so many ways. It’s a thing. It happens to a lot of babies. No one ever told me that before I gave birth. I wish they had.

Mid-day Gratitude’s and Challenges

The kids and I have just finished our lunch on the back deck. The sun is shining and I know we are lucky to have a back garden and outdoor space to stretch our arms and legs and enjoy a little bit of nature during this period of self-isolation and social distancing.

We are lucky to have each other.

We haven’t done any online learning today. We haven’t been on any virtual museum tours, math or reading websites. We spent the better part of the morning with me making an attempt to place an online grocery order and the kids watching celebrities read to them from Storyline Online. The order didn’t go through. They had three books ‘read’ to them. Yesterday we spent way too much time with screens, so today we are taking a break. Mostly. It’s hard when visiting with friends means more screen time too.

My daughter, Tallula, has painted florescent rainbow stripes on the back-garden fence and it brightens everything. I put the vintage sheet with yellow roses over the dirty cushions on the patio couch and we choose music from Seb’s iPad to sing along to in the sun. I rake up leaves into big piles. We roll through the garden spotting purple, yellow, and white crocuses open in the sun.

Getting Sebastian, to the back garden in his wheelchair is a bit of an obstacle course. I fold up the ramp at the front of the house to navigate over the raised corner of the front garden without tipping his chair forward or bumping into the fire bush, more skeleton than bush. We manoeuvre past our neighbour’s large basketball and hockey nets, situated in the centre of the shared alley. Later the basketball net falls over in the wind, blocking our path completely.

Tallula points out both the blooming flowers scattered throughout the garden and Ewok’s dog poo. Sebastian is uncomfortable from his morning blend, but I try to clear up the garden anyway. Sebastian’s dog, Ewok, runs up to give him kisses and Seb settles for a moment.

A pair of chickadees swoop down just over Tallula’s head and she screams in horror, as if bats in a cave have been caught in her gnarled hair. This sets Sebastian off, and he is now inconsolable. I will have to enlist his dad, working from home, to help calm him completely. I feel lucky he can take that break to help me in that moment.

I wash my hands for the umpteenth time and take over with Sebastian. I take his growing almost twelve-year-old body out of his wheelchair and carry him up the stairs to the deck and into the house. I vent his tummy to get the air out and give him a toileting break. He wouldn’t want me to share this, but it’s an important part of the picture of our day. Due to the pandemic, we’ve canceled all caregiver support.

We need to ensure Seb stays healthy.

We return to the garden where Sebastian feels calmer now and I rake the leaves while he watches his sister paint. The sun is still shining. Sebastian and Tallula’s dad joins us on the deck after lunch, giving me a half hour break to do something for myself. I find a quiet place inside and take some deep breaths to centre and then do some writing. I feel good in his moment, refueled. Ready to take on the second half of the day.

I carry Sebastian down the back-deck stairs and we join Tallula at her painting station. We cuddle up on the patio couch and read The Fantastic Mr. Fox by Roald Dahl. Ewok comes over to give Sebastian kisses and lays at his feet. We read for nearly an hour.

Sometimes it’s one day at a time, and sometimes, it’s just hour by hour. Today we finished a book in the middle of the afternoon with the sun beating down on us. We do what we can with what we’ve got.

Today, it’s a seesaw that just might balance out.

Fairy Gardens and Family Self-Isolation

As the weather begins to warm and we rake away the leaves, to see the tiny green buds reaching for the sun, we revel in the opportunity to spend time outside.  It’s been almost two weeks since school was forced closed and March Break Camps canceled due to the request to stay home and ‘flatten the curve’ during the Covid-19 pandemic crisis. Everything is still grey, though the sun does try to make an appearance every now and then.

I remind the kids that rain will make the flowers grow and the dirt will become green and alive with flowers returning from the year before. Daffodils. Crocuses. Lady bells.

I recently sprained my ankle so getting out and about has been challenging. While I can’t take the kids for a walk around the block with Seb’s service dog, Ewok, I can lean on a rake and pull the leaves into great big piles, left sitting until a yard bag can be procured. Not an easy task while all non-essential businesses are closed and we hunker down in our home to keep the most vulnerable, like our son, safe from the disease. While Sebastian prefers a roll around the hood with his dog; his sister, Tallula, is happy to dig out the fairies and gnomes hiding in the garden shed from the summer previous. Since I can’t carry the big wooden crate with all of the painted rocks and tiny figurines, there’s even a Smurfette among them, she makes several trips between the back and front gardens.

Sebastian likes to be doing something most of the time. But he needs help to do everything.

While watching his sister build the fairy garden isn’t his favourite thing to do, as people walk by, moving to the middle of the street to keep their distance, they say hello and that brightens all of our moods. We feel a little less alone in all of this. Ewok settles in next to Seb in our walkway, and I take to decorating the rocks with sidewalk chalk to add a little more colour.

Sometimes it’s hard; I feel guilty with Sebastian just watching while we move about and build a fairy garden. But I have to be ok with it. Because it’s also for his sister, (and I also have a sprained ankle and am not Wonder Woman). Giving Tallula the space and time to create something, whether or not her brother can be directly involved, is important.  Because sometimes it’s about her. It has to be.

Dear Tallula-bula

Dear Tallula-bula,

You are the sister everyone would hope for, but only Sebastian got to be so lucky.

You are the sister that makes him laugh when he’s feeling overwhelmed, tired, or in pain.

You are the sister that tiptoes away to make a big heart, cut out and coloured in bright red marker, with an ‘I love you’ message on the back; because Sebastian’s foot got stuck in his skinny jeans and we thought we might have to cut it out, (the jeans, not the foot).

You are the sister that creates the best energy for dance parties.

When you were little, you used to sit on Sebastian’s tray facing him as I twirled his chair around to ‘What I wouldn’t do’ by Serena Ryder.

Now we twirl him back and forth across the room to each other. And Serena Ryder is still one of our favourites.

You are the sister that learned to crawl because she wanted to reach her brother’s glasses and pull them off of his face, making us all laugh together with each no that I said.

You are the sister that said ‘Are you gonna catch me guys?’ wearing your pink piglet outfit during a game of dress up; you waited until Sebastian got a head start, with my help, to starting running away.

You are the sister that helped Sebastian learn how to play games on his eye gaze, so little that you still pronounced his name, “Abees’.

You sit next to him now, so he can ask for help if he needs support navigating his folders.

You teach others how to communicate with him.

You are the sister that thinks drool and reflux is gross, but still climbs up into bed to snuggle next to your big brother for story time, knowing he might do either or both.

You are the sister that invites us to parties in your bedroom, with handmade tickets, even one for service dogs, and special accessible seats, so that we can watch you perform a song about the things that you love in the world: friendship, gymnastics, music, and singing.

You are the sister the loves all abilities soccer because you and your brother get to play on the same team, with the same friends.

You are also the sister that loves your own school friends, quick to explain something about Sebastian to them if they don’t understand, ‘he smiles for yes and puts his eyes up for no.’

You are the sister that I was afraid to have for three years after your brother’s traumatic birth.

You are the sister that let out a loud cry upon taking your first breath outside of my womb, a cone head from all the pushing and getting stuck in the birth canal.

But you made it into the world, so much more easily than your brother. But your life in the world may not always be easy.

You are the sister that sometimes misses out on things because your brother is sick or in hospital.

You are the sister that also knows the hospital so well that you find the fun in each visit; hugging the big, purple Mickey Mouse statue in the cafeteria, every time.

You are the sister that has to calm your emotions so you don’t upset your brother.

You are the sister that feels a weight other sisters don’t feel.

You are the sister that helps your mama when she is tired and weary. You are the sister that loves learning how to help take care of your brother, even though we never ask it of you.

You are the sister that offers unconditional love and comic relief when we all need it so much. I can’t imagine our lives without you.

You are the sister that completed our family.

Love always, no matter what,

Mama Jama

Recovering from Broken Heart Syndrome

Did you know that you can die from a broken heart? In some extreme cases, broken heart syndrome can lead to severe, short-term heart muscle failure*. But in most cases it is treatable and recovery is possible within weeks.

What defines a broken heart?

Is it the loss of a loved one? A break up, or some other traumatic shock? The long, slow grieving process of a child’s sickness or neurological diagnosis? The wearing down of the self over time; always putting others before you?

What about separation from a partner because the relationship can’t handle the stress of raising a child with a disability, or you just weren’t compatible enough to weather this life together any longer.

What about the separation from a child due to time in the hospital?

What about endless appointments and siblings to take care of too? What about just forgetting you are important too? Broken heart syndrome presents as a sudden, sharp pain in the chest, right in the heart.

Shortness of breath following an extreme emotional or physical event. Women are more likely than men to experience this kind of pain, which is a reaction to the surge of stress hormones in the body. We have all heard how stress can make you sick, wear you down.

It can also kill you.

It’s an extreme thought, I know. But, even while not common in broken heart syndrome, it does happen. Our mental health can and does affect our physical health. And as parents, we often take care of ourselves last. As a parent of a child with a disability, it is even more likely that we are the last to visit the doctor.

Last week, I asked my husband to take me to the ER for these very symptoms. They had been happening for about four days. A pain so severe and constant, that I didn’t know what to do to make it go away.

It was not the heavy weight of a panic attack (I’d had one of those the week prior), but it also wasn’t accompanied by heart attack symptoms such as arm or upper back pain, or light-headedness/fainting.

I had no risk factors; being a vegetarian, a healthy weight, and moderately active. The ER doctor did not believe there was anything wrong with my heart. But my EKG (electrocardiograph) was abnormal, so a stress test was scheduled for the following week.

No one seemed interested that I was taking anti-anxiety medication or that I was under a lot of stress.

So I finally asked the ER doctor if one could have a heart attack because of a stressful event and he mentioned broken heart syndrome. A newly-defined diagnosis, not much is known about it, but it does exist.

When I returned the following week for a stress test, my EKG flagged me to do a stress echo, where ultrasound pictures would be taken before, during, and after a grueling ‘uphill’ bike ride.

What it showed was that my left ventricle was much wider than normal and my heart was pumping much slower whileresting than it should be. I was asked if I had a problem with alcohol (some binge drinking in college, over 20 years ago, was not likely the cause) or had been treated for cancer (no).

The doctor also said it was possible that a virus has caused an insult on the heart and I would eventually recover from it. Another echo was scheduled for a year out to see if my numbers had changed. I was diagnosed with borderline cardiomyopathy. I had a broken heart.

It was true, 2018 has not been kind to me. It has been a struggle.

I started taking antidepressants in April. I had anxiety attacks. I started seeing a psychotherapist. I finally started taking care of myself. I began to think about who I was again, outside of a wife, mother and caregiver.

But it was going to take time and I kept getting dealt punches and knocked down faster than I could climb out. It all caught up to me and my heart broke. I stared at the ultrasound pictures on the screen. My empty, slow-beating left ventricle. I saw it move faster and grow smaller with exercise.

A resting heartbeat should be a fast as what my heartbeat was when I exercising. Would exercise help? No, it just had to heal. Reducing alcohol intake would relieve some strain. Say goodbye to that glass of wine while preparing dinner…

What broke my heart doesn’t matter. It certainly was a collection of things.

What matters is our mental health and how it can affect our physical health. And as a parent of a child with a disability we are often struggling to balance dozens of appointments at a time, add a sibling recovering from a tonsillectomy, and some fairly big marital stresses and BOOM!

A broken heart. I’m only 41. I have to be here to take care of my kids. So I need to take care of me. I have to learn to say no when I feel overwhelmed. I have to learn to stand up for myself when something happens that is not healthy for me.

I have to take breaks. Take walks. Sleep more. Let go.

Letting go is big and it can mean so many things. But once set in motion, the weight lifts and the pain disappears and I feel lighter again. I start to remember who I was before all of the things I am now. I start to rediscover myself and explore new interests. I start to be me again. My heart begins to heal.


Two Different Trips to the Hospital

Leading up to her tonsilectemy my daughter would ask about it every night. I tried to help her feel calm and give her time to ask questions. We would talk about how she would go to sleep and when she woke up her throat would hurt. Everyone told her how many popcicles she would eat and how much ice cream.

As if cold treats would be an equal trade for wading through a groggy anesthesia and then days of pain medication that made her feel like a zombie and tasted disgusting.

And hurt her throat to swallow!

No one told her it would be difficult to drink ice water or that she would get tired of only being able to sip on apple juice because dark coloured juices could be mistaken for blood if she did in fact vomit early on post-surgery.

No one told me that I would flash back to the hall in the hospital where my son barely survived his traumatic birth when walking with my daughter to the pediatric ward. That hall seemed so much longer and wider in my memory than in our recent visit while back in London (UK).

It was the first time returning after the last time we left; finally bringing Sebastian home after 16 days in the NICU. No one told me that I would remember the first time he was put under anesthesia and the look of fear and confusion in his eyes as he went under.

No one told me what it would be like to instead see my daughter put on a blue cap and walk through a door and then imagine her walking down the hall to the OR, holding the nurse’s hand to be put under anesthesia.

Without even turning to look back and later nodding her head when I asked if it was scary to go back there without me.

I’d done this loads of times before. How many times had our son, with cerebral palsy, been put under anesthesia for dental work, g-tube surgery or MRIs for his seizure disorder. How about hip surgery? That one lasted 8 hours. I didn’t even know how long a tonsilectemy would last, though I was fairly certain it would be under an hour. And I was right.

Forty-five minutes later, hardly enough time to drink a large cup of coffee and eat a pastry, the doctor would come looking for us; all went well and Tallula would be in recovery shortly. The waiting room volunteer would take one of us to see her. It felt strange that only one of us could go as we both always went for Sebastian.

Leading up to Sebastian’s hip surgery we watched a video on the hospital website and visited with the anesthesiologist.

We made sure they asked him what flavour anesthesia he would like, and he would respond with a yes by smiling and vocalising and a no with his eyes up. We made it to strawberry and he was happy. Tallula attended a Child Life class in a hospital playroom with a half dozen other children who would have the same or similar surgeries around the same time. They were able to ask questions and look at photos of a puppet waving goodbye to her ‘parent’ at the hallway to the operating room.

I sat in another room with other parents watching a video to explain a process with which I was already too familiar. But this hospital didn’t allow a parent to go back for anesthesia, although it was what we took turns doing for each of Sebastian’s surgeries. Ok, after two I made my husband do the rest. I just couldn’t keep doing it. But I still didn’t want him to feel alone or afraid. I was worried about Tallula feeling the same.

Sebastian does not have the ability to voice his concerns, fears, or ask questions about surgery and hospital stays.

We teach as much as we can about the process so it feels comfortable and not scary, asking a lot of yes and no questions as we go to help gauge how he is feeling. Tallula has all the words but when she woke up groggy and confused from her surgery, she still pointed to her body and said ’Is it done? Where are my tonsils?’ I thought she meant in general and I began to explain that the doctor would have done something with them and she waved her hand and said ‘No, where are they in my body?’ Had I actually failed in telling her that her tonsils were in the back of her throat?

Had we all failed in explaining her basic anatomy for the surgery? Did we just assume she knew from listening to our conversations about strep throat and popcicles? That she would ask the right questions beforehand? Or was she just so disoriented from the anesthesia, she couldn’t remember?

It was a new experience watching my daughter wake up and reach for me to cuddle with her.

She tried to pull me over the bed rail until I flagged down a nurse and convinced her to lower it so I could lean in and cuddle with my six year old daughter; the little girl that still needs me next to her to fall asleep at night. I read to her as she floated in and out of sleep. She swallowed hard and coughed. I held my breath each time, fearing she’d vomit up blood, as I have heard is possible. She did not.

I texted my husband updates and looked around a recovery area that would have been big enough to accommodate him and sighed because it wasn’t allowed. Once she’d kept her first popscicle down we were moved to the next phase of recovery, where her dad could join. There would be no overnight stay.

There would be more reading and popcicles and then a visit from the Child Life volunteer. Tallula would take the tv remote and find the cartoon channels, English or French, it didn’t matter. The remote next to her ear, bringing me back to Sebastian’s hip surgery recovery days that lasted much longer than the four hours we’d be required to stay here.

We returned home to a freezer full of ice cream and popcicles of every flavour and Grandma ready to give Tallula all the extra attention she deserved.

It was her turn to have all the special food and all the cuddles on the couch. Sebastian couldn’t wait to see his sister when he arrived home from school, greeting her with a hand made card with well wishes from school mates and a joke recorded on his step-by-step switch.

It felt good to be home. All of us together.

Let the recovery begin.

Special Needs Families: My Son and His Service Dog

When he came to live with us he’d had extensive, ongoing training.

My husband and I attended four days of intensive training with Ewok to learn his commands and have his trainer pass the baton to us.

The update? He’s an awesome dog with impeccable training and he already adores our son.

Once we got Ewok home, it was time to work on reinforcing his bond with Sebastian. This morning when Sebastian got on the bus to go to school, Ewok wanted to go with him.

I think our reinforcements are working!

Each morning Ewok bounds up the stairs to greet Sebastian while he’s still in his bed.

Ewok sleeps in his crate downstairs. Eventually he will sleep in his own dog bed in Sebastian’s room. Sebastian kicks his legs in excitement, loudly vocalizing and smiling, anticipating their reunion.

I move Sebastian from his bed to my lap on the floor, or in a chair, and he gives Ewok a treat. Then Ewok cuddles up next to Sebastian so I can help him pet Ewok.

It’s the best part of a very busy morning in getting ready for school. As I see Sebastian’s face beam from his happiness with his new buddy, a rush of emotions overtake me. My heart is full.

Having a dog in our home is a new experience for our family. And Ewok is not your typical dog.

He’s been trained in specific commands and he will continue to learn more to assist Sebastian.

In addition to his commands, I have him come to Sebastian when he is upset and help Sebastian pet him, which immediately calms him.

Ewok gives him kisses and then lays at his feet, as close to Sebastian’s wheelchair as he can get.

When Ewok arrived, we put him in a down-stay command next to Sebastian during meals and other times so he would get used to being with Sebastian while practicing the command for longer periods of time.

This was to help him know that his place is with Sebastian, but also build his stamina in down-stay so that we can go out to a restaurant or a doctor appointment with Ewok.

Already, Ewok is choosing to lay near Sebastian without being commanded to do so.

To continue with Ewok’s training and retaining the training he’s had, I have taken him out on adventures each morning, such as a ride in the accessible van to the grocery store, farmer’s market shopping, and posting a parcel.

Sebastian has one day a week in which he does therapies instead of school, with part of that time home with me.

This will also allow him the opportunity to go on adventures with Ewok too and reinforce his training.

This past Thursday we took Ewok to the library, on an elevator, and then browsed and checked out some DVDs.

Over the weekend we took him to a busy farmer’s market as a family and on a hike where many other dogs were present.

Ewok has to heel next to myself or my husband, his lead attached to Seb’s chair. He has to ignore dogs, kids riding by on bicycles, and people purchasing food. He’s doing it!

As Ewok’s handler, I have to be ‘on’ at all times. I have to make sure he’s following commands and not paying attention to people, noises, dogs, or traffic.

I’m definitely more tired by the end of the day than I thought I’d be! But we get to have fun too. I toss the ball to Ewok in the back garden, while Sebastian watches from the porch.

We have to make sure he doesn’t get excited around Sebastian but we also have to make sure Ewok gets the exercise he needs and the down time from working.

When we are out, he has his vest on and he is working; sometimes that could be hours. When we get home, he usually takes a big nap!

Sebastian’s sister has loved seeing how Ewok has connected with Sebastian, ‘oh that’s so cute,’ I hear her saying when Ewok is giving him kisses or sitting next to him. She also struggled at first, ‘I bet Sebastian loves petting Ewok; he looks so soft.’

She has taken on the task of filling Ewok’s water bowls and loves helping with the ‘pooper scooper,’ a contraption that has a long enough handle so Seb can help too. We help Sebastian fill up Ewok’s food dish and he gives him plenty of treats.

I know that she will help others understand that Ewok is a working dog while we are out and I imagine her helping Sebastian tell other’s about him too.

So far, that’s been my job while his sister spends most of her time trying to ignore Ewok. She understands that he needs to bond with Sebastian. And as she sees it happening, it get’s easier to do.

Ewok has toys and bones that he has moved from his crate downstairs, to his dog bed in Sebastian’s room.

After Sebastian left for school today and we went upstairs, he went in to Seb’s room and to his bed to look for him.

Watching him attach to Sebastian is an amazing feeling. And it’s just going to keep getting better.

Special Needs Families: Getting ready for Ewok

We were all really excited to see him again. The last time we had seen him was in May, for Sebastian’s birthday; he came for a visit with his trainer.

Sebastian was the only one of us allowed to interact with Ewok. It was difficult not to say hi, look at him, and even ignore him when he came up to say hello. But it is important that Ewok creates a bond with Sebastian.

As Sebastian is in a wheelchair in which he cannot move independently, Ewok has to go up to him. We have to hang back and allow that bond to happen and reinforce it with praise.

I wasn’t sure whether Sebastian’s five year old sister would be able to hang back like his dad and I, so she went to the park while we followed behind Sebastian, Ewok, and his trainer on a walk around the block.

I teared up seeing Ewok at Sebastian’s side; greeting him with kisses, and Sebastian’s wide smile. For his sister, it’s easy to interact with Ewok; she can embrace him, pet him, and even speak to him.

When we started this journey towards a service dog for Sebastian, I have to admit, I didn’t think about how it would fully affect the rest of our family.

My focus was on Sebastian and how having a service dog would enrich his life. I thought about the amazing bond he would have with a dog, a furry best friend by his side, all the time.

I thought that perhaps someday his dog would be able to notify us if he’s having a seizure or bark to get help if Sebastian needs it.

I set my eye on a goal for Sebastian and I am dedicated in achieving those goals.

Fast forward to our first training session with Ewok; we started with hand signs and verbal commands; sit, down, stay, ok (release), come, and heel.

Ewok must be able to respond to our commands every time. His leash will be attached to Sebastian’s wheelchair; we must tell him what to do when we stop to chat with someone, or wait at a crosswalk to cross the street.

He has to stay next to Sebastian and never get excited enough to run, as he’s large enough that he could take Sebastian and his chair down.

He’s already doing a phenomenal job with the trainer and now the baton is being passed to us.

Once we learn how to command Ewok and he responds consistently to our commands, we can train with Sebastian and then bring Ewok home.

I’m excited about the new dynamic having a service dog for Sebastian will create for our family. After our session we talked a lot about Ewok coming to home to live with us.

We talked about him being Sebastian’s working dog. How we can’t cuddle with him or get him too excited because he always has to be ready to follow commands.

He won’t be climbing up onto the couch to watch TV with us or cuddle with anyone other than Sebastian.

We plan to get a really big floor pillow so that Sebastian can cuddle with Ewok, or relax on the floor next to his wheelchair.

Ewok can hang out with Sebastian in another room while I’m making dinner. If his sister leaves the room, Seb won’t be left behind on his own.

Sebastian is excited that Ewok will have his own special bed in his bedroom.

Sebastian couldn’t wait to tell his friends at school about our first training session and his visit with Ewok.

I printed a photo of them together for him to take to school. His sister asked for a photo of Ewok, ‘because I love Ewok too.’

‘You know that he is Sebastian’s dog and he will be a working dog so you won’t be able to cuddle with him, right?’ I mentioned again.

‘Yes, mom, you told me that already. I understand,’ she replied firmly. And I know that she does.

I have conflicting emotions. I’m giving my son the opportunity to have the bond of a lifetime with Ewok, and yet also keeping his sister from creating the same bond.

As parents we want to do the best for our kids. We often struggle with feelings of inadequacy about whether we are doing something right or making the right decisions.

My husband reminds me of the things that don’t come easily for Sebastian, like friendship and playing on the playground. Of course I know this.

Sebastian will be able to take Ewok for a walk, while his sister hangs from the monkey bars or makes new friends, easily. Research tells us that kids with disabilities struggle to build meaningful friendships.

I look forward to seeing Ewok (hopefully) make that part of childhood easier for Sebastian. I hope that he will not only be Sebastian’s buddy, but help break down barriers that disability often creates.

Ewok will become a part of our family. But he will never be the focus of our family.

We will never treat him as the centre of attention. He will be Sebastian’s buddy and Sebastian will learn to count on him to be by his side.

Ewok will calm Sebastian and be his #1 buddy. Having Ewok will not only enrich Sebastian’s life, but in doing so, enrich ours.

Special Needs Parenting: Two Kids, Two Schools

She’s attending senior kindergarten this year at our neighborhood school, which for us is directly across the street.

It would be her first time at school so we were all very excited, especially her big brother Sebastian. He’s going into Grade 4, so he knows how much fun school can be.

The school has an elevator, so Sebastian was looking forward to enjoying the tour too.

It took us up all three levels of the school to a view of the CN Tower and the downtown skyline, visible from one of the hallways.

It seemed quite spectacular for the other little boy on the tour, new to our neighborhood. I’m one of those moms that wants a tour so I know where my kid is going to spend her days.

I also want my daughter to feel comfortable and ready for goodbyes on day one, knowing where she would be going once inside the building with her new teacher and peers.

Tallula’s kindergarten classroom is on the main floor, but there are steps down to both the gym and the music classroom. Therefore, despite having an elevator, the school is not fully accessible.

Aside from the lack of accessibility, it also has no nursing or the additional academic supports and support staff that Sebastian needs for his epilepsy medications and g-tube feeds, so he cannot attend our neighborhood school with his sister.

He cannot be the big brother on campus for her to say hi to on the playground. He can’t come home for lunch like his sister can either. His presence is absent, as are any children with wheelchairs or other physical accommodations.

I believe that a part of Tallula’s own identity, that of a sibling of a child with a disability, will also become something that is not a part of her learning experience at school. Yet it makes up a big part of who she is.

Her peers won’t have the experience of knowing someone with a physical disability at school either. I often wonder how this will affect her relationships with them as well as her brother over time.

We have lived in this neighborhood for four years; I have visited several schools in the city we live in, hoping to find a school that could accommodate both of my children, even if it meant moving to a new neighborhood.

I so badly want them to go the same school. Sebastian goes to a school a bus ride away, in a congregated setting for kids with disabilities and medical needs.

I strongly believe in and advocate for inclusion; without it, how will society change?

But over the past two years I have had to come to terms that inclusion in our school district is not possible on the level that Sebastian needs.

Most schools, like our neighborhood school, cannot provide the kind of care, or accessibility, his school can provide for him. Sebastian’s school has a phenomenal music program and a pool, which are both really important for him.

The other schools I had visited, which could potentially accommodate both of my children, had neither.

After we toured Tallula’s new school and discovered that they have a music and drama program, and even met the drama/dance teacher, I was really excited for her year ahead.

I thought, “This is going to work. Both of my kids are going to get what they need to thrive at school, even if it’s not at the same school.”

I felt that I would be ok with my kids going to different schools because I really believe that the programs at each one support my kids in the ways they need and that will help them grow.

I have had to accept that life doesn’t always coincide with my educational philosophy or what I had imagined for my family.

But later that afternoon I received Sebastian’s bus pick-up and drop-off times – which would add an hour each way to his school day – suddenly I felt deflated rather than hopeful.

The sense of discrimination we often deal with in all facets of our daily lives, crept slowly back in, determined to sour the first days of school.