2020 has been a year. I remember in the early months I worried about Robert being accepted and treated fairly. The gap for many with disabilities has widened, thanks to the pandemic. Despite the challenges, the year 2020 hasn’t been only horrible. There have been some pretty great moments too.
To send 2020 off right, our friend Kylie made this beautiful video. She held an “open casting call” for people of all abilities to submit moments in 2020 that represented joy and pride. In the heaviness of the Pandemic news, the quarantine, the work-from-home-while-raising-kids, and the worry that the lack of socialization brought, it’s moments like these that deserve to be celebrated.
Kylie not only recognized this but put it to video!
Some women slip into the role of a confident mom more easily than others. It’s not that they are better moms, it’s just that they are more confident in their abilities.
I’ve been told I’m one of those confident moms. Truthfully, I feel confident in my role as a mom. I’ve always wanted to be a mom, and from the moment my fresh, sweet boy was placed in my arms, I knew this was who I was meant to be. Each sweet baby I’ve carried and birthed has only affirmed that.
I attribute my confidence to my support system. I have an incredible family who is so supportive – they will help me without hesitation or judgement. My boys idolize their grandparents, uncle, and great-aunts.
My family is a constant pillar of support, reaching out to me and offering to help. Family dinners weekly? Yes please! Rainy day drop-ins just for a change of scenery? OK! Don’t mind if I do! A phone call just to say hello? Let’s chat!
When I was pregnant with my oldest, I asked my mother-in-law to come to stay with us to help me to navigate being a new mom. She came shortly after Robert was born and helped me adjust to being responsible for this sweet, sweet boy. Being able to get some rest in those early days was so beneficial.
I also have a group of friends who I can turn to for commiseration – some live 6 hours away, and others live 600m away. Regardless of the distance, these friends are always there to offer empathy, a listening ear, or to build me up after a tough day.
And there are tough days.
Our “public self”, as we all know, is not the complete picture. There are days where I text my husband asking him when he’ll be home because I am not doing OK and need support. There are days when mommy needs a time out because she’s losing her cool and not modelling the behaviour she expects. Because let’s face it, I might be a confident mom, but I’m not perfect.
I have an idea of what kind of mom I want to be. In my mind’s eye, I created a vision board of who I want to become as a woman and a mama.
I want to be a mom who offers her boys a safe place to be, even if they’ve made mistakes. Robert might only be 6 years old, but the foundation for this safety net is being built and reinforced daily. I might not love the choice he made when he took out the acrylic paints and slathered it on himself and his brothers, pretending it was sunscreen…. but, I love him. And while he knew that he didn’t make a good choice, he also knew he is loved.
I want my boys to see a mom who placed importance on community connection. As parents, we get to know our neighbours, look out for them, and check in on them.
I want communication skills to be learned at home, including how to speak with each other even if we are upset or angry.
I want my children to feel celebrated, to strive to be great and to not be afraid to try new things.
I want them to see a mom who models being kind (to herself and others), and who recognizes the importance of making mistakes as a way to build yourself up. Like most parents I know, some of these things I learned in my own home growing up, and others I wished were present.
Sometimes I watch Robert and I see so much of myself in him. He is the typical eldest child (as am I). He’s achievement-oriented, and he wants to be the best in what he does. He can also be cautious, and I see him looking for ways to set himself up for success. Sometimes this means he doesn’t even try because he doesn’t want to fail. He wants to do things “right” and “perfectly” on his first-time attempts at something new. And, boy, does that ever resonate with my personality.
When do we learn that failure is so horrible?
Failure teaches us so much. We know that we have room to grow when we aren’t successful at something on the first try. We don’t expect a baby to be able to walk without stumbling as they take their first steps, so why do we expect of ourselves perfection from the gate?
Failing teaches us resilience, growth and empathy. Giving up isn’t the answer to failure. Moving forward is.
And the same can be applied to motherhood. When we have an imperfect day, we need to remember that moving forward teaches our kids so much, and it gives us strength as parents. Those imperfect days allow us to reframe what is important to us. And when we invest the time into focusing our energy on what matters to us, our energy will flow in that direction. We will show our kids that it’s ok if your day or week didn’t go as you planned. We can accept that, and adjust our focus accordingly. We can fail and still be great.
I am a confident mom.
I am a confident, imperfect mom.
I advocate for my boys, especially Robert. I model a growth-mindset whenever possible. Rather than look at my friends with envy – you know, the ones setting up amazing sensory bins or literacy activities, or the ones baking homemade bread with their kids and successfully implementing a chore routine with them – rather than look at those friends with envy, I look to them for inspiration. What can I learn from them?
Motherhood isn’t a competition. It’s a journey, and it’s hard.
Give yourself permission to accept that it’s hard. But mama… you can do hard things.
As my oldest son is about to embark on his journey as a first grader, I’ve been thinking about the first 6 years of his life, and reflecting on what’s it been like to raise a child with down syndrome.
When Robert was born, we didn’t know he had Down syndrome. We received a birth diagnosis – I was alone in the hospital room faced with minor surgery to close a tear near my cervix. I remember feeling as though the staff felt that his diagnosis meant that our son wasn’t going to be capable. We were mostly warned of all that could go wrong, and it didn’t seem as though there was anyone to champion what our journey might look like.
I remember that Robert was born just before World Down Syndrome Day, and the video circulating that year was “Dear Future Mom”. I cried watching it. Alone in mother care I cried for my son who was down the hall, alone in a NICU room. That video gave me hope, it countered the messages the health care workers were giving me.
In the video, there is reference to how similar kids with down syndrome are to their peers with 46 chromosomes. The similarities are juxtaposed with a message that at times things will be incredibly difficult.
We spent the first year of Robert’s life much the same as the way we spent the first year of our other boys’ lives – sleep deprived, happy and full of wonder that this child was ours. We marvelled at his growth and celebrated all of his accomplishments.
We learned sign language and made a point to use it in order to open up the lines of communication with him as soon as possible.
We were hard on ourselves when we compared the milestones he had yet to achieve with those his (typical) peers were surpassing. He always surprised us, achieving the milestones on his on terms and in his own time.
He reminded us daily that he was capable.
When Robert was 2 and 3, we had many appointments. He was closely monitored to ensure he was growing well and his body was healthy. The ophthalmologist prescribed him glasses. He had bloodwork done, as he will continue to have done on a yearly basis.
Just before his second birthday, he took his first steps. We knew he needed as many opportunities to move and strengthen his muscles, so we enrolled him in all sorts of activities. Gymnastics was his favourite.
He made friends at daycare, despite being speech delayed. Kids in his class learned the signs he used most often. We participated in research studies that exposed him to therapies typically reserved for children with autism, in an effort to help him learn to speak and master new skills.
He went to music therapy. Had audiology appointments every 3 months or so to ensure his hearing was progressing well. We went to provincially funded speech language therapy appointments.
Then, at 4 years old Robert, had an explosion of growth and skills. He started junior kindergarten, and in the 2 years since he learned to walk, he became a flight risk with no concept of danger. Then, like now, his ability to assess a situation to determine if it’s dangerous wasn’t developed. On a field trip to the sugar shack, the educators saw how quickly he can become distracted by a playground.
He had an echocardiogram. More blood work. More eye appointments.
And as his language exploded, his personality became even bigger.
He began his potty training journey, and was night and day trained before the age of 5, with few accidents. He started to learn how to play interactively with others (and not just next to them).
Just before he turned 4, he became a big brother. He took to that like a fish to water, and was so proud to be a big brother.
At 5, Robert began to play violin. He became a big brother twice over – not nearly as excited about the second brother as he was about the first, but still asked to hold “his” baby every chance he could. 5 year old Robert loved to help, to perform, to play and to read. His early reading skills began to emerge, and he had a thirst for all books, especially early reader books.
Our 5 year old Robert could count in French and English, he knew his alphabet in both languages, and he began to test boundaries in new ways (which meant he was getting into mischief).
And now Robert is 6, and he has become a teacher. He loves to show his little brothers what he knows. He will sit next to them and read early reader books en français out loud, pointing out what he finds funny in the images. He gets frustrated when he is made to exercise and stretch new brain muscles, preferring, like many of us, to do easier things.
At 6, Robert is still playing the violin. He loves putting on concert after concert for the family on the back deck, and he can often be found singing and playing air guitar on a makeshift stage.
6 year old Robert still has annual bloodwork and hearing appointments. He still loves being a big brother. He is still looking for ways to get into trouble (ask me about acrylic paint…). He thinks pirates are the best, he loves to make people laugh, and he’ll take to you instantly if you play “le foot” (soccer) with him.
While Covid has prevented him from learning how to better interact with his peers, it has allowed him to learn how to kick a ball over a tall fence, to learn how to play a variety of board and card games, and he has been fortunate enough to develop a deeper relationship and bond with his grandparents.
And I watch all he can do, and how much love he gives, I think back to what those health care workers told us.
They said when he was born that there would be so much he wouldn’t be able to do.
They tried to cast shame and doubt over the newborn I had just birthed.
They didn’t know the first words I ever whispered to him, “you made a lot of people very happy just by being born.”
They didn’t know that we would reject the ideas they tried to plant in our minds, accepting only that he was capable, loved and ours.
Like so many others, we recently made the decision to isolate our family for 14 days. It wasn’t an easy choice – it certainly wasn’t mandated due to recent travel. Our decision came at a time when the information available was mixed, and we weren’t really sure how serious this virus was.
Prior to having made this choice, we celebrated Robert’s 6th birthday. Before those feelings of uncertainty penetrated our lives, Robert was surrounded by a small group of friends and celebrated by a room full of people singing “Bonne Fête”.
He blew out the candles on his giant pull-apart cupcake-cake, and devoured his favourite flavour, ‘show-co-lawt’.
He laughed, was loved, and had the best night’s sleep following his Little Gym party.
The following day, we went over to my parents. It was the beginning of March Break, and Robert was going to camp “Grandmaman et Pépère” while Mom & Dad worked. Just days before, news had come that schools were to be closed for 2 extra weeks, but we had only learned that day that the daycare was closing. Everything felt surreal – was this an exaggeration? A knee-jerk reaction by our government?
The plan was for us to return on Robert’s birthday. We would celebrate as an extended family, watch him open a few gifts, sing his favourite song (“Bonne Fête”), and after cake, we’d take him home.
As the week progressed, each day seemed to bring with it more uncertainty.
I’m sure you all felt it.
One day, you wake up thinking “ah it’s just a bad cold or flu, we’ll be fine if we get it!” and the next, you find yourself obsessively washing your hands, cleaning everything, and physically avoiding people you pass on the street. Then you find yourself looking at the Government’s symptom checker, convinced that the tickle in your throat and the fatigue you feel is caused by this novel virus, and not the fact you are a full-time parent who is simultaneously hopping on conference calls, prepping meals, walking the dog, and scrubbing down doorknobs.
That uncertainty you felt? We did, too.
That feeling led us to make the decision to isolate. We would not leave our home or yard except to walk the dog.
We stopped bringing the littles to the playground at the local school and the nearby parks.
Days later, the City announced all public parks were closed.
The feelings of unease continued to grow.
We were waiting for the news to give us answers, to tell us when to expect normalcy to return.
All that came was more uncertainty.
That uncertainty led to our decision to stay home and isolate ourselves.
This meant that we would not be picking up Robert until those 14 days of isolation were over.
It meant we’d kissed our 5-year-old for the last time. The next time we saw him, wouldn’t be on the day he turned 6, but weeks later.
Since this is a global health-crisis, we understand why we aren’t able to be with him.
We, the adults, made the decision together. Our big boy is with two people we trust implicitly. He is loved beyond measure, he is well cared for, and, boy, was he celebrated on the day he turned 6.
And though I worried about how Robert would feel without his family party on his birthday, I admit, I never thought to consider the impact that this would have on Sullivan.
But recently, that impact became so glaringly obvious.
The other morning we walked the dog to a near-by wooded area, with the kids in the double stroller. Our dog-walking tradition has become one where Sullivan gets out of the stroller when we get to big paths or wooded areas. He loves nothing more than being able to “cours vite! cours vite!” (run fast! run fast!) in the wooded area.
He is so excited that he doesn’t know where to look as he runs along, occasionally falling down as his feet try to keep up with the momentum caused by his level of excitement.
If you’ve never watched a 2 year old run in the woods, giggling, you’re missing a truly joyful sight.
On this walk, as he was running along the path, we came by a woman and her toddler playing on the forest floor. Seeing us, they moved off the path to let us pass.
As Sullivan ran past them, he cried out “LES AMIS! LES AMIS!”. He was so thrilled to see other people, and another small child.
I realized in that moment that with daycare being closed, not only was he not seeing his daycare friends, he wasn’t seeing anyone but his mom, dad, and baby brother. He must be feeling so alone.
Later that same evening, after Sullivan brushed his teeth and put on his jammies, we began the bedtime routine.
As part of the bedtime routine that night, we read books, then I rocked and sang to him, as I told him I loved him and thanked him for a fun day.
When Robert first went to Camp Grandmaman & Pépère, Sullivan would ask to sleep in Robert’s bed. Sullivan and Robert, you might remember, share a bedroom. But these past few nights, he began to choose the comfort (and security?) of his crib instead. Not only that, he’s started to insist on sleeping with his bedroom door open.
That night, I ran my fingers through his hair as I spoke about how we’d get to spend time playing together the next day. I whispered good night, told him I loved him, and left his room.
Without thinking, I closed his door as I left.
He cried. And not just the cry of protest, but the sound of heartache.
When I went to check on him, I asked him if he missed Robert. He nodded. He calmed down in my arms, I told him I loved him, and put him back to bed. As I left the room, I was sure to check that his door was open behind me.
It was this moment that it hit me.
In that moment, I truly realized how difficult this isolation is on Sullivan.
As adults, we sometimes forget that our littles are acutely aware of what is happening around them. We forget how they observe, and try to process and absorb change.
I was guilty of this with Sullivan. I assumed that to him, this wouldn’t be much different than a long weekend, or Christmas break. He’d be able to run, play and cuddle with us every day.
But this boy, my little firecracker, feels things so deeply. I should have known he would notice. That Sullivan would feel a void in the place his brother holds in his heart, in our hearts, and the spaces he belongs in the house.
He misses his daycare friends. He misses his routines. Most importantly, he misses his family – his aunts, grandparents and his big brother.
We are doing our part, and it comes with a huge sacrifice of being separated from our son. We ask that you please do yours.
The sooner Canadians get on board, the sooner this will be over and the sooner our family will be back together.
We are all feeling the change and the challenges. The grief and the uncertainty. Your experience with these emotions might be different than ours, but we are all feeling it.
Please give yourself grace, give your neighbours grace, and most importantly, please #StayTheFuckHome.
My husband and I don’t do much on Valentine’s Day. He isn’t a “card guy” and I don’t like the commercialization of it all. I also feel as though we show each other love in many ways as part of our daily lives.
Robert worked hard on his valentines for school, despite being under the weather (again). After writing out his name over and over on the back of each Franco-Ontarian valentine for his classmates and some of the educational team he interacts with, we were pretty bummed that he wasn’t well enough to go to school on Valentine’s Day.
Despite the fact that Robert wasn’t able to go to school, we vowed to have a nice day together. We started it off with a trip to the Walk-In clinic (real romantic, right?). Robert had been ill for over a week, and the night before spots on his face appeared. It looked to me like he had impetigo, and we thought it best to rule out any other illness while we asked for an antibiotic cream. The walk-in doctor quickly confirmed that he had impetigo, and cleared Robert of any other illnesses. He was given a prescription for the cream, and would soon be on the mend.
Since my husband had the day off, he went to get groceries to make a nice family supper while I was at the clinic with Robert. Little did I know, my husband had a surprise in store for me…
When we arrived home from the clinic, my husband asked Robert to help him with the groceries. I busied myself in the kitchen making us lunch, when suddenly the front door opened and I hear, loud and proud, “Je t’aime, Maman!”
I turned the corner, and there was my oldest boy in the front foyer, grinning ear to ear, holding a bouquet of roses.
And that, my friends, is how you make your wife smile for the rest of the day.
The dinner and wine we shared later that evening was delicious, our time as a family was perfect, but nothing will ever top my almost-6-year-old coming through the front door exclaiming he loves me while holding a bouquet of roses.