And then I heard her talking to the two young girls that stopped by out front. ‘She has a brother. His name is Sebastian. He can’t talk but if you speak English to him he understands. He says yes and hi with his smile.’ All of this in one breath. I didn’t see the girls’ reaction as I was inside giving Sebastian a drink. I poked my head out to let them know I was there. To say hello. We had just gotten home from camp and Sebastian was both exhausted and thirsty so I turned back in to him as Tallula sat on the front porch. As excited as Tallula was to see him she is also very excited to see the ‘kids’ that live two doors down from us. Two girls and a boy. The middle one, the one who had been talking, then went on to say ‘he’s inside right now, having a snack’. Did these other girls care? We’d never me them before. ‘He’s also 6 but he’s really small, like a 3 year old.’ She has regurgitated nearly everything we had discussed this time a week ago.
Let’s rewind. Tallula sees the neighbors outside playing when we get home from dropping Seb at camp. She leans over our fence and waves while loudly saying hi. It took a few times of her doing this but they [finally] decided to come by. We have a chat and then it’s time for lunch or whatever and Tallula and I head inside. After camp pick up the same thing happens but this time Seb is with us. And there are a lot of questions, mainly from the middle sibling, she’s 7. Older one is 10 and youngest, a boy, is 5. The middle one, A, is very curious but also skeptical. The oldest, S, is very matter of fact. The boy, B, is just sweet like 5 year olds are. They are all unsure about Sebastian. But Sebastian is very sure, and excited, about them.
So we all sat together near the front garden and I tried to answer questions like, ‘Was he born this way? Why is he so skinny? Can he understand me if I speak English to him? Does he go to school? A special school?’ I explain things as simple as I can. I tell them first and foremost that they can say hi to him. That he understands what they say but he can’t talk the same way that we do. He smiles for yes and puts his eyes up for no. He uses a special communication book. Or the iPad. They say hi to him. And he vocalizes back, which sounds like a ‘hi’ much to everyone’s delight. (Including my own!)
Kids are funny. These kids have never met someone like Sebastian. And I think that’s sad. They ask me whether he goes to school and assume he goes to a special school. And he does, I tell them. But after next year hopefully he will go to a neighbourhood school. But he needs a school with an elevator because he uses a wheelchair. S gets excited and tells me their school, the one across the street, does in fact have an elevator. I tell them maybe he will go to that school but that he needs a school which has the right teachers. Which is so true. (And wouldn’t it be perfect if he did; home for lunch! If only it were that simple.)
I want these kids to accept Sebastian. I want them to include him. I can’t make them. But I can introduce them to him. And help them get to know him. And see him for the funny and happy little boy that he is. And hope that someday they will say hello to him before I remind them that they can.
I know it’s late. It’s not even Friday. Kind of apropos I suppose. When I saw the word ‘belong’ I couldn’t resist. You know what it feels like to be left out of the bubble of (new) motherhood when your (first) child has additional/special needs.
Even after Tallula was born I still didn’t belong to that typical mom bubble. I didn’t belong with those new moms who talked about things happening ‘on time’ or, gasp, ‘early’. Like sleeping through the night. Grasping. Sitting up. Crawling. Walking. Talking. I hated being next to these women in doctors offices and clinics, so giddy with excitement at their baby’s first anything. Bragging. Complaining. ‘She never stops talking. She gets into everything! Makes the biggest messes. She runs in and wakes me every morning. She eats all the time. And with such ease.’ Ok, I added the last one for effect. It was difficult being around those first time moms.
Unless their child had a disability too. OR Unless they had a child with a disability too. That’s where I belonged. Even though now, I too, had a baby that could possibly do all of those things listed above. Early. On time. But it didn’t matter. It didn’t matter when Tallula did anything. We got excited about everything and anything but mostly we were filled with a sense of awe and wonder. Because we knew what it was like to wait and hope and believe. Then we knew what it was like to accept. To understand. To acknowledge. And move forward.
Tallula and I attended a babies group this year one morning a week at Sebastian’s previous nursery school. The class was filled with new moms. Some moms were like I was with Sebastian. New to diagnosis. Or an unknown/no diagnosis. Scared. Tired. Overwhelmed. Some moms were the moms I never wanted to be around. Except they weren’t. Because they were there. Mixed in with the rest of us. The class was a mix of typical and non-typical babies and their moms and sometimes their dads. Some moms had other kids and some this was their first. Some of the babies had a diagnosis and needs and some didn’t.
I watched Tallula help those that needed helping and challenge those that didn’t; sharing a toy or taking one away. I watched her make friends with everyone. I watched myself open up to moms that didn’t know what it was like to be one of us, the mom with the exceptional child. And I listened to moms that were just learning and finding their way in this new type of club.
Tallula and I. We belonged. And it felt wonderful. All because of Sebastian and his pure, exceptional, awesomeness.
Just over a week ago we had the opportunity to attend the Easter Seals Regatta. We were invited to ride a boat in the harbor and participate in some boating fun with a BBQ afterward at the Royal Canadian Yacht Club. Several other Easter Seals families were also invited and matched up with other boats to enjoy an afternoon on the lake in the sun.
Toronto firefighters greeted us at the ferry to lift Sebastian (in his chair) onto the ferry which took us to the Toronto Islands RCYC where we met our Captain for the day. We were paired with a lovely couple and their dog who took us out in a sailboat! The kids sat on our laps in their life jackets and Seb’s chair went below deck. We went right close to the fire brigade boat and got partially soaked. The sun was shining and the air was warm. It really was the perfect day.
At the BBQ afterwards we sat with some new friends we met through Seb’s hippotherapy classes. They have two girls, one just a year older than Tallula. It’s always nice to make connections with other families and a bonus when the siblings can connect like she and Tallula did. We also met up with a family that I’ve mostly connected with online. Meeting in real life is always so fun. Her daughter is also in Tallula’s swim class! Sometimes the world feels so big and sometimes it’s just the perfect size.
Thanks Easter Seals for a lovely day out. Thanks to all the firefighters who volunteered to make the boats accessible for our children. And thanks to those that gave their time to sail and boat our families around. Hopefully there will be even more next year so more families are able to participate. The event raised funds with both a silent and visible auction at the BBQ. In its 24-year history, the Toronto Easter Seals Regatta has raised $4.5 million for Ontario’s children and youth with physical disabilities.
The Week that Was
Sword fights with sticks and umbrellas.
Laughter until your belly aches.
Round and round.
Arms up then down.
Side to side.
Cousins and memories and more.
Walking hand in hand.
So big and so small.
Swinging slowly in the shade,
arms around my boy.
Cousins and love and more.
Walks in the forest.
Sun shaded by the tall trees.
Snake across the path.
The city boy jumps and laughs nervously.
Discussions about the Michigan Rattler as he slithers into the cover of tall grass nearby, suddenly uncoiled by a strangers’ steps on his own path.
The boys point out snake holes as we continue on the path and we contemplate where our recent encounter may live.
Smoke then crackle.
Wood from the pile.
Folding chairs in a makeshift circle around the fire pit.
Sticks at the ready, pointed ends. Marshmallows. Chocolate. Graham crackers.
We lick our lips in anticipation.
The kids delight in something new.
Dune buggies bouncing over pot holes and uneven patches of grass.
Helmets on; contemplative thoughts
was that really fun
Too loud and bouncy
for Mama and Seb.
The Mule will do just fine
for the two of us next time.
I used to
be brave take more risks.
Like riding on top of buses in Nepal
while the Maoist Rebels watched the roads at night.
Or just carefree.
Climbing ladders to nowhere
Baby attached in a permanent hug
Ice cold from the well
Fresh from the earth
Running. Jumping. Laughing.
Through the kiddie pool sprinkler.
Cuddles and exploring
Smiles and kisses and hugs
Pictures in sunshine
With Aunt Shannon and Uncle Bill
Ice cream stops
at the only corner shop in town.
Butter pecan for old times sake.
Chocolate because it’s a staple.
Pink (strawberry) for Tallula.
The heat melts it just standing there.
Pink and brown clown faced smiles.
Lake swims with life jackets.
A big, strong daddy to toss each kiddo into the air.
Catching just before the dunk.
Seb laughs until he nearly holds his breath.
Tallula shouts ‘higher!’
And ‘more pease!’
Fish nibble our toes and Ethan catches one in his hands.
The kids swim until their jaws chatter and lips turn purple.
Take a break
but not for long.
Sunshine warms us quickly
and we head back in for more.
Blanket of stars.
Cassiopeia. Little Dipper and Big.
Like a warm comforter from my childhood
keeping my thoughts company.
We miss Joshua.