Dear New Parent Whose Baby is Hospitalized

You are not alone. And if you’re reading this, you’ve come to a good place.

Two wonderful moms, Jess and Kayla, have created a space, Beyond the Beads, for families to share their hospital experiences and to come together and support one another. They asked me to share my family’s story by answering a few questions posted in a word document on their site. I used the questions as a guide, but the existence of the form itself prompted memories of my hospital experience.

Forms. In the hospital, there were plenty of them. After my twenty-week ultrasound, which showed a soft-marker, or indication, for Down syndrome, I sat in the genetics clinic at McMaster Children’s Hospital filling out the same form for the second time that day with my family’s medical history. With my husband Dan by my side, we waited for the results of my ultrasound and bloodwork. The high-risk obstetrician arrived, test results in hand: positive.

Then, in the NICU, after Elyse was born, I was handed a from with a checkbox and the word disabled. I wondered: aren’t all newborns disabled and dependent on their mothers?

When a fetus is diagnosed with a chromosomal difference doctors consult their own forms and checklists. In the case of Down syndrome, the two most common health concerns involve the heart and the gastro-intestinal system.

Elyse was born with duodenal atresia—an atresia meaning a blockage in the duodenum—a section of the small intestine. She would die without surgery, no food able to pass through. I’m thankful we knew about the need for immediate surgery beforehand because I’m a mom who likes to prepare. I read what I could, but ultimately, nothing can fully prepare you for your child’s hospital experience. It’s just something you have to get through.

Our eldest daughter Ariel was 18 months old when Elyse was born. The forms to fill out were minimal with her birth; she was a textbook baby, mine a textbook pregnancy. The contrast between my first and second pregnancy experiences was one of the most difficult aspects of our hospital stay. I had to push away surreal thoughts of this shouldn’t be happening and embrace the idea of this is happening and you will get through it.

Elyse underwent surgery to fix the atresia at one day old. Dan says waiting for the surgery to be done, and knowing our baby was okay was one of the hardest parts for him, as well as the days of her being in critical condition that followed.

We made the best of our hospital experience, and I encourage other parents in our situation to do the same thing. Take mini breaks. We were fortunate to have family and friends babysit Ariel so Dan and I could visit the hospital together in the evenings when he was off work. After singing to Elyse in the NICU and reading her stories, we’d head down to the café on the main floor and grab a hot chocolate. I cherished those brief reprieves. And somehow, miraculously, we’d find ourselves laughing between tears, enjoying each other’s company, and I’d think who else that has a newborn and a toddler at home gets to do this? We made the best of a difficult situation as a coping mechanism for survival. In many ways, I found myself completely cut off from the outside world. What mattered for those four and a half weeks was to check off the doctor’s boxes: get through surgery, intubation and heavy sedation, ditch the NG tube, build the strength for one breastfeed, then two, until Elyse could successfully breastfeed eight times in a day and we could bring our baby home.

Another difficult stage was right before the finish line. Dan recalls when Elyse was moved from the NICU to the “ICU lite” as he called it, also known as the PICU (Paediatric Intensive Care Unit).

“I was like, okay, well can’t she just go home then?” he said. From my end, one day I showed up in the morning for my daily vigilance over my baby and she was gone. The team moved her to the PICU overnight without telling me. I quelled panic, and in the end, the news was good, our baby was getting stronger, closer to home, but the scenario brings up an important point. Good communication. We were greatly comforted by the physicians’ plans. We felt like our baby’s life was in good hands because the team at Mac took the time to explain what was going on (notwithstanding the occasional blip or two). As the parent, make sure you’re included as part of the team. You establish this relationship by showing interest, asking questions, and being involved as much as possible with your child’s care.

Before we were in the hospital, I talked to another mom whose son had been through heart surgery.

“During that time,” she said, “you will be a mess.”

It’s going to be tough. Things are going to be hard.

“But now,” she said, “those days feel far behind us. I almost forget they ever happened, and one day—I know it’s hard to image now—but it will feel that way for you too.”

Elyse is eight years old now and, in our case, these words ring true. Life goes on. Acknowledge that what you are going through is hard. And know that it will pass.

Our hospital experience was part of our journey as parents, and we’re forever grateful to the professionals who saved our daughter’s life, and in a way, saved ours too.

Elyse has been back to the hospital for follow-up appointments, a few minor surgeries, but we continue to approach her life as we did those days in the hospital: with joy and one step at a time. And with love. When we sang to Elyse or read her stories in the NICU, the nurses in the room would lean in because they could feel our love and they wanted to be a part of it. I believe, above all, that love healed our daughter. Please, if your baby isn’t doing well, or they take a turn for the worst, know that isn’t your fault either and not because you don’t love them enough. If you’re even thinking like that then I know you do carry an abundance of love inside of you. Sadly, sometimes no amount of love can make a sick baby better and I see those parents; I’m sending you all the care and love in the world.

Our love for each other and our baby got us through our time in the hospital and there is no form for that, just a whole lot of feeling the way with your heart.

Don’t Judge Me

On Monday after the holidays, Dan looks after our three girls while I sit upstairs in my bedroom office writing a class assignment due in the next few days. He’s being incredibly flexible and generous with his work time, and I am grateful for that, beyond grateful. We had many intense discussions all through the summer, when the kids were home for six months straight, and then the announcement came that the kids would be home at least an extra week after the winter holidays, which felt, to me, like a punch in the stomach. How would the kids feel about staying home again? How would I get all my work done I had to do that week before my residency the second week of January? Most importantly, who would be in charge of the kids and the kids’ schooling that week?

Later that Monday afternoon, I received a call from the girls’ school. The totality of words exchanged is a blur and unimportant, all that matters is the final outcome: Elyse can come back to school for the week. I almost cried.

I’m going to speak for myself here, but maybe sometimes in the parent disability community, we are too afraid of acknowledging that we need help because we’re afraid that somehow makes our kids look bad. Like, all those times we advocated for how capable they are and how they can do so many things (and they CAN), but there are also so many things they need help with, and my god, parents, we can’t do it on our own. I really can’t.

When the school called me and said they would take our daughter, I wanted to weep with relief. I almost did. Why? It’s complicated. She needs the help. She needs one-on-one. We don’t have the time. We don’t want to teach her one-on-one; it causes conflict and inter-personal drama between members of our family. There are only two of us, my husband and I, and we have three kids and a needy puppy. We both have full-time work. Having to homeschool our kids puts a strain on my relationship with my husband and our marriage. I’ve written about it in a few essays you will one day get to read (in my next book!), but I will write about it here too because it needs to be known. Having the kids home for six months put a huge strain on our marriage. We were pushed to our personal limits. And part of that is our kids’ ages. We have a four-year-old, she was three at the time. And part of that is, yes, I fully admit it, having a child with Down syndrome. I’m ready to fully admit it. In the case of my family, and of course I don’t speak for other families on this one, given my daughter’s personality, and by virtue of being our middle child, and because she has Down syndrome and her brain works and processes somewhat differently, there are additional challenges we face in parenting her. There are additional challenges we face in meeting her needs. At times, these challenges are not small. These challenges aren’t insurmountable, either, but it depends what you have on your plate. These challenges aren’t nothing.

But here’s the part where I get mad, because some asshole is going to say, “see—there! Having a kid with Down syndrome is harder, that’s why we aborted.” Or give some terrible excuse about why kids with Down syndrome should never be born in the first place. To which I would like to respond: Who named you god? Who crowned you king of the species, decider of who lives and who dies? Why do you think you are so special that you get to decide? And why in the hell would you think that just because I find there are challenges in having my daughter with Down syndrome that that would mean I don’t want her here? Why do we discount family? Why do we discount love? Why do we always discount love? Kindness? Goodness? Nature?

The problem is that the laziness inside of each of us wants to simplify the narrative. Down syndrome parenting = hard, therefore, something I would not want. But that story is much, much too simplified. Yes, at times parenting my daughter with Down syndrome is hard, but, hear me out, it isn’t that simple. What I would like to be able to do is to tell you that sometimes it’s hard without you judging me or my child. What I would like is for your support. Not pity or charity. Never pity. Don’t even try me with pity. We are a family endowed in privilege, so please do not give us material things. Just love, please. Emotional support. These are the things every family needs right now and always, but especially families who have kids with disabilities.

And since I’ve mentioned the word privilege, I want to point out that having typical children is a sort of privilege. Don’t use that privilege to look down on others. Use that privilege to help people with disabilities and their families rise up.

And what I would like to say is THANK YOU. Thank you to my daughter’s school for understanding that educating our three kids at home, in front of screens all day, was never going to work for our family. THANK YOU for caring about our daughter with Down syndrome’s education by offering us a better way. Thank you for the choice. Families deserve a choice. Thank you to her teachers and educational assistants for making this work. Thank you to her board for heeding the minister of education’s advice. Thank you to whoever made that recommendation to the minister, that kids with disabilities should have access to one-on-one face-to-face education during the shutdown. Thank you for not making me feel like my child is an after-thought.

Thank you for knowing our daughter well enough to see that, to her, the Zoom platform is really just a giant made-up stage where her actions have no consequences, and so butt dances all day long are perfectly acceptable. And funny faces up close to the screen. Picking one’s nose on camera. And that making loud noises when her sister is trying to learn is fun, and so is shutting the computer screen down when it’s her turn to learn even when there’s a real-live person on the other end trying to teach her, and she’s making mom and dad pull their hair out.

THANK YOU, a huge thank you, to her special education resource teacher who knows that, in the week leading up to my MFA residency, I have a shit-ton of work to do, and that my husband and I might explode if we have one more discussion about responsibilities (Okay, they didn’t know about that last part). Thank you for that feeling of joy bursting from my chest when we got off the phone that somebody cares about us, about our daughter, about me and my work.

Because I know, and if you don’t know this you should, but I know, that it is the mother who will get blamed. If school doesn’t go well, if the kids aren’t on time, don’t show up, it’s the mom’s fault. She is the one who is supposed to be doing everything. And guess what? I’m done. I’m fucking done being fully responsible. My husband has stepped up in the hugest way. HUGEST way. And I want to thank him because he knew and accepted when he married me that I am a person with my own ambitions. I am not a wife who has dinner on the table at 5:30 p.m. sharp, like my grandmother was expected to. That was never the agreement. I am the human who works feverishly, following her passions, as long as I can, then comes down in time to eat the dinner he’s prepared for me. At least right now, that’s the wife and person I am. I’m in an intensive program. I’m building a career. I’m also doing what I love. And when his work got tough, you better believe I was there for him. Let no one forget I stayed home to raise our girls for years. I breastfed our babies. I stayed up through the night. I cooked passable meals. I made school lunches. I am not saying he owes me, but I am saying that he can do it too. Men can care for children too. They can take care of the home. Even when they are working. Women do it all the time. Nobody is saying that’s ideal. My husband is doing it, downstairs, right now. He knew that was part of the deal when he married me, that we are equal domestic partners.

But all of this? Virtual learning. A global pandemic stretching into almost a year. A constant underlying threat to you and everyone you know and love. Nobody was prepared for this. And so we’re just doing the best we can, together. But he’s giving, there is no doubt he’s giving, more of himself than he ever wanted to, and for that I am grateful. And thank you to the school for keeping us a healthy family and for giving us this support. And if you didn’t know this was what we were going through, what many, many young families, in some version or form, are likely going through, then now you do. And if you didn’t know that for some families of kids with disabilities, the challenges can seem to stack up higher, now you know that too. Just don’t judge me or my daughter for it.

 

 

Own Voices

“Why are we not telling stories that celebrate and include differences?” asked Amanda Leduc, author of Disfigured, in a talk I listened to recently.

The talk was a wonderful online session offered through Writers Literary Festival (put on by The New Quarterly, based in Waterloo, ON). Amanda Leduc and Emily Urquhart discussed fairy tales, Disney and other storytelling, and how classic narratives impact our view of disability. Leduc explained how disability is perceived as ugly, unwanted, and the antithesis of a happy ending. I can’t get these ideas out of my head now, I don’t want to; I especially need to pick up Amanda’s latest book, Disfigured, where she fully explores this topic.

I’m thinking about how the stories we tell ourselves and the stories we listen to, have a huge impact on our lives. Stories are everything.

I’m wondering about the story young people are taking in, and what it means for a country to possibly re-elect a man who makes fun of people with disabilities, by slapping his limp wrist against his chest and rich suits on camera. I’m trying to distract myself from the possibility of that sad ending. (Update: now I am celebrating the story of a Black, South Asian woman as Vice President)

After reading Dorothy Ellen Palmer’s book, Falling For Myself, I now notice ableist slurs everywhere. Palmer calls out ableist language in popular usage, words such as: idiot, moron, imbecile, lame, among others, and expressions, such as blind-sided, deaf or hard-of-hearing (used as insults) and standing ovation. All of this language contributes to the negative persona of the disabled individual.

I’m listening to Sheila Heti’s book, How Should A Person Be? Nearing the end, after I’ve gotten laughs from the book’s quirky characters, I feel quiet inside, stumbling over Heti’s insistence on using the word “retard”. I understand this is a work of fiction, but authors of every genre have an onus and morality to write in a way that doesn’t demean groups of people. You can argue the right to vulgarity in art and the right to self-expression and free speech. Say whatever you want, and I support that idea in theory, but what I can’t support is language that is ableist and unnecessary and that at its core, borders on hate. What I can’t support is using the r-word three times in a row for the sake of pointing out a character is acting stupid.

A man called me stupid to my face once. Interestingly, it was over an argument with language. He called another man “fucking retarded”, and I happen to overhear and stepped between them. One man left, and I was left facing the name-caller. “Please don’t say that.” I spoke calmly, evenly, while looking up at him.

Our discussion was civile. He disagreed with me, citing the example of his truck having a retarder. I explained my case against using a derogatory term that demeaned people with developmental disabilities, whether he meant it that way or not.

We happened to be standing in front of my child’s school and personnel soon found out what the man had said. I wrote about the experience, briefly, not naming any names, and the next day, pushing my baby in a stroller with one hand, holding my daughter with Down syndrome’s hand in the other and my oldest just up ahead, the man stormed up to me. He had gotten in trouble from the school.

“I know what you did. Did you think I wouldn’t find out? That was stupid. You’re stupid,” he said, walking away in a huff. It isn’t enough for some white men to have all the power; they have to put a woman in her place.

Name calling is low down on the scale of integrity and intelligence and so I won’t sink to that level. But then, I have to ask the question, why do some artists?

In his Pulitzer Prize winning novel, The Overstory, by Richard Powers, while there is beautiful prose and heart-rendering descriptions of nature and a sense of urgency to preserve it, the list of ableist language used through-out this book is long, long and as far as I can tell, completely unnecessary. Let me explain what I mean by that.

In the story I recounted above, the language the man used says something about his character, but I am requoting his words within the context of educating. In other words, I used the ableist language above not solely to entertain readers, or for lack of insight, but for the purpose of educating, to show this type of language is wrong. In Power’s The Overstory, ableist language simply is. It isn’t there to portray a character, it’s simply part of the author’s vernacular.

Writers: here’s a great reason to drop the ableist’s slurs. Every time I read the expression blinded or the r-word, I fall right off the page and out of the book, and I see the white man who wrote it in all of his privilege, oblivious to how this language can hurt. I’m not saying that Richard Powers did this deliberately, I’m simply calling attention to a need for authors to be more deliberate in the language they choose, and to steer away from ableist terms when there are better options. Choose words wisely, in other words. Another way of looking at this is to stop appropriating language from the disability community.

If you want to learn more about this, I suggest following people in the disability community on social media. “Nothing about us without us,” is a slogan that began with the disability rights movement in The United States in the 1960s at the time of Judy Heumann (read her book, too: Being Heumann), and truly, any issue pertaining to the disability community is most impactful coming from individuals with disabilities themselves. Be an ally and listen to the ‘own voices’ of disabled people.

Here are some Twitter handles Amanda Leduc suggests following to tune into the conversation:

Dorothy Ellen Palmer — @depalm

Dominik Parisien — @domparisien

Elsa Sjunesson — @snarkbat

Imani Barbarin — @imani_barbarin

Rebecca Cokley — @RebeccaCokley

Yeah Brown — @keah_maria

Andrew Gurza — @itsandrewgurza

Marieke Nijkamp — @mariekeyn

Lillie Lainoff — @lillielainoff

Adam Pottle — @addypottle

Ross Showalter — @rosshowalter

 

I would add:

Andrew Pulrang – @AndrewPulrang

Gregory Mansfield – @GHMansfield

Alice Wong – @DisVisibility

Jane Eaton Hamilton – @eatonhamilton

 

Here are some stories Leduc also recommended in her talk:

  • Brave Enough series by Kati Gardner
  • One For All, by Lillie Lainoff, publication in 2022
  • Voice, by Adam Pottle
  • Falling For Myself, by Dorothy Ellen Palmer
  • Even If We Break, by Marieke Nijkamp
  • Six of Crows series by Leigh Bardugo
  • Unbroken: 13 Stories Starring Disabled Teens — anthology, edited by Marieke Nijkamp

When we choose to use ableist language, we perpetuate it. We engrain notions of ableism into our culture, because our stories have power. Our stories are important. And so we have a choice to make. The answer to me seems obvious.

I want to leave you with some of Amanda Leduc’s words, which I hope will become a part of the story you want to tell and live: “Every life, no matter how it is shaped, has inherent value.”

And, “Disabled stories and narratives are for everybody.”

 

Dear Troll Who Thinks My Daughter Doesn’t Deserve An Education

“A writer finds the story,” editor of Geist and one of my fellow MFA classmates, AnnMarie MacKinnon writes. This line resonates with me deeply. Every post, every essay I’m now writing; every thread of my last book is one giant hunt, chasing story down, banging down story’s door.

Sometimes the story comes to you.

What’s the story this week? Well, it’s not looking good. There’s news. This past week, Deondra Foxx, Roberta Buckley and Joey Moss, three beautiful souls from the Down syndrome community, have all passed away, with deep condolences to their families and loved ones.

Deondra Foxx is the beloved little sister of actor Jamie Foxx, who wrote in a social media post, “my heart is shattered into a million pieces.”

An announcement on DSE’s website about Roberta’s death was posted: “Roberta was born with Down syndrome into a world where she faced rejection, segregation and only the bleakest of expectations. She overcame many of these obstacles to live and love with dignity and independence.” Roberta’s mom, Dr. Sue Buckley, is a leading expert in education and development for young people with Down syndrome. Sue is well known for beginning research examining early reading instruction for kids with Down syndrome in the 1980s and she founded Down Syndrome Education International in 1986.

Joey Moss is a legend in the Canadian sports world. Moss was a locker room attendant for the Edmonton Football team and then worked with the Edmonton Oilers for decades after Wayne Gretzky brought him to the team’s attention during the 1984-85 season. You can sign the petition to help rename a downtown Edmonton hockey arena ‘The Joey Moss Community Arena’ in his honour.

And while this is going on, a woman in Toronto by the name of Kayla Sanchez started a petition on Change.org, a very different kind of petition, that came to the attention of the Ds community with the title, “Make Down Syndrome Kids Be Put In Separate Classrooms As Normal Ones.” I’ll spare you the entirety of the description, but it begins: “My son just started kindergarten, where I was heartbroken to learn that there was not one but two children in his class with Down syndrome. I mean first off shame on the parents for not getting the procedure, because instead they have chosen to scar and terrorize normal children.” The petition had only one signature, that of Kayla, and was removed the next day by Change.org thanks to the tireless advocacy of parents ever-vigilant, but was supposedly circulated to other parents in TDSB before its removal. This petition is hate speech and a blatant misrepresentative of an entire group of people.

My first impulse, when I saw this post circulating within my networks of parents, was to ignore it. Wasn’t this just some troll behind the screen, like one of those fake Facebook requests I got from solidly built men in the army? Maybe. Or was there a real, honest to goodness mother out there who genuinely, in today’s society, believed these false notions and horrendous stereotypes and wished to perpetuate the misinformation?

If you don’t know anyone with Down syndrome, if you don’t see anyone with Down syndrome, if you don’t hear about anyone with Down syndrome doing good things in your community, then probably you won’t care to learn more about people with Down syndrome, or maybe you’ll form misguided opinions of your own. Stereotypes. You won’t care to learn more about the good things people with Down syndrome are doing in their communities or what they can accomplish, people like Joey Moss who boosted morale on the team bench and worked hard to do his job. You won’t care about the family members who love their family member with Down syndrome, how Jamie Foxx loved and respected his sister deeply, how she danced at the Grammy’s with him; and you won’t understand how hard family members have worked over the years, and self-advocates, the people with Down syndrome themselves, to not only improve the quality of life of individuals with Down syndrome within the medical community, which has resulted in drastic life expectancy increases, and who have pushed tirelessly for social change because people with Down syndrome can and do learn, dream, work, and contribute meaningfully to their communities when they are properly supported and valued. If you don’t know any better, you won’t understand that people with Down syndrome love deeply and are loved deeply by their family and friends. You might, somehow, not even know their lives matter. Their lives matter immensely.

Groups of people who have been historically marginalized and dehumanized become easy targets for uneducated folks who don’t know any better in their heads or their hearts. To say they don’t know any better is to be generous. I am guilty of once being uneducated about Down syndrome, but being uneducated isn’t an excuse for stripping away another human’s rights. There is no excuse for stripping away another human’s rights. If you don’t know anything about people with Down syndrome and you don’t care to learn, then I suggest you keep your mouth shut.

Though many individuals with Down syndrome lead inspiring lives, I’m thinking of Robert Pio Hajjar , Sherri Brynard, Lauren Potter, Angela Covadonga, Madeleine Stuart, Megan McCormick, Eli Reimer, Yulissa Arescurenaga to name a few, these people have nothing to prove. They don’t do the things they do, become incredible human beings, to show their inherent worth, or so that you and I can feel better about ourselves. They are simply incredible humans.

Children with Down syndrome are loved equally by their family members and we would ask no less of society. And society does love our children, but we still have a ways to go. When someone doesn’t understand why there might be a child with Down syndrome in a typical school classroom, a child that has every right to learn as the next child, we still have a ways to go. When people still use the ‘r-word’ and language to demean those with intellectual disabilities, we still have a ways to go. When t-shirts are being sold on Amazon with the slogan, “Abolish Down Syndrome”, we still have a ways to go. When whole countries decide to target those with Down syndrome – Denmark, Iceland – with goals of being “Down syndrome-free” we still have a ways to go.

I can tell you all the ways as a parent that this person’s words and these kinds of thoughts disgust me; how ableist and discriminatory these practices are. But it’s better if you hear it from a person with Down syndrome themselves.

I will never forget the dignity and grace of South African self-advocate Sherri Brynard. Sherri faced many hardships in her life, including losing her father in a tragic waterfall accident. She went on to become the first qualified teacher in her country and around the world with Down syndrome. When I listened to her speak at the 2014 World Down Syndrome Congress in Chennai, India, she spoke clearly and with conviction, “people like me are aborted,” she said, “we deserve to live!” Every hair on my arm stood on end. Every fibre of my being was attuned to this woman’s powerful message, this incredible woman with Down syndrome standing before me on stage speaking up for her own rights. People with Down syndrome deserve to live, and more than that, they deserve the same support and opportunities in life that we all do, the same civil liberties and freedoms to exist, to health care, education and meaningful employment, and to finding joy and meaning in life.

And for those who are unwilling to accept that diversity is part of the human condition, that seeing and interacting with those who are different from us can invoke compassion and empathy, feelings that make us human and make our communities stronger and better; that people with Down syndrome are here and have always existed, that it’s up to us to take care of one another; that up to 25% of the adult world is disabled, that one day you or someone you love, will also be disabled. If you cannot accept all of these things, then I have nothing more to say to you. Other than I hope when you are old and disabled someone will have the mercy and compassion to look after you when you could not find it in yourself to look out and look after your fellow human beings.

Excluding groups of people is not the answer.

Take a look at the people standing next to you. Look after each other.

End of story.

Mom Guilt

When I look outside my window, the rain is falling sideways, leaving wet streaks, not unlike tears, against the glass pane. Pane or pain? I had a rough morning with my daughter. She got up at 6:30 a.m., brushed her hair for an hour, yelled down at me from upstairs, demanding that I put her hair in a ponytail, while I’m frantically putting together three lunches and breakfasts (plus my own, but mothers don’t really count, do we?) I run up quickly and gently pull her hair back, “there you go. Now, please get dressed.” Another hour goes by, most of that time she spends eating, which is great. I need her to eat. I take out the garbage, recycling, and green bin in the rain, continue to serve breakfasts, put away dishes. Clean new dirty dishes. Now I’m chopping up veggies and serving bunny mac and cheese into three thermoses and by golly, she’s still not dressed. I’m feeling less kind, less gentle, the frustration that has been building up over the past few days of solo parenting is about to boil over.

To aggravate the situation, I have a nagging cold that seems to have gotten worse, with each passing day, instead of better as I hoped. Bring on the Hydra sense and Kleenex box. Saying you have a cold during Covid times is like saying you have the bubonic plague. I’m fairly certain it’s a cold, but still. Nobody wants to be sick right now. I’m trying to avoid breathing on my children, desperate for them to stay healthy.

As the minutes tick by, 8:30, 8:37 – Ariel’s friend arrives on her bike – 8:42, oh now it’s 8:50 a.m. and we really truly have to go. Everyone has eaten breakfast, three lunches are packed in backpacks, agendas are signed, masks have been changed, water bottles washed and filled, hats, mitts, raincoats and rainboots sorted. Children have used the bathroom; some even brushed their teeth. And we could leave and be on time except that one child is buck naked.

That sounds funny, but I am not laughing. Not laughing at all. These moments aren’t about the specific incidences themselves, but about the dozen or so other moments of annoyance in the past few days that have boiled me down to this point. No water left in the pot.

Two hours after I first handed her – handed her – the outfit (why isn’t she getting it herself?) my daughter looks at me at 8:55 a.m. – we’re now to the point of being late – and she says, “No! I don’t want these pants.” She sits on the ground, wearing only her underwear.

ARGHHHHHHHH

I scream. I rant. I act like a terrible mom. I fail.

The truth is that I can’t handle being ignored. And I refuse to relinquish control. These are not flattering qualities, in case you were wondering. The truth is that time presses into my side, making me uncomfortable.

I listened to an interview with experienced broadcaster and author Howard Green and his advice when interviewing was clear: “There is a great, basic, human need to feel understood.” Listen, listen, listen, and listen well, he stated.

When I feel my child understands, that they are listening but that they choose not to hear me, I find that infuriating. The problem is, and it’s always obvious to me afterwards, it is I who is clearly not listening. I who has misunderstood. When I get angry and scream at a child to get ready, what I’m really asserting is my intense need to be in control. To be the A+ parent. I know this about myself. I am competitive, I want my kids to do things “right”, be their best selves, but in addition there’s an immense pressure on parents to be the best parents too: get kids to school on time, make healthy litterless lunches, take an interest in their day, check their agendas, do homework, and follow-up with the school as necessary. Prepare healthy meals, spend time with your kids, sign them up for extra-curriculars, make sure they have everything they need (hats, coats and mitts – winter is coming!), Halloween costumes. Pressure, pressure, pressure. Get it right, moms. You have a full-time job? Good – then maybe you’ll be able to afford family travel, the ultimate status symbol, and that overpriced house you live in or lifestyle you want to afford. Do you have interests? Good – those you can pursue when the kids are sleeping and you’re exhausted. Don’t forget to plan time for exercise, self-care, and a wedge of time for yourself! Gosh, not sure when you’re going to fit that in…guess you won’t. Balancing these ideals is impossible. Yet, I buy whole-heartedly into the rederick of having it all.

 

The problem is at times I schedule my day so tightly so that I can be the A+ parent, self, student, wife, colleague, etc. that there is little margin for error. For humanness. For the needs of needy children. Children always need something. At bare minimum, love. Let that be the rule and not the exception to the rule. I should have learned better by now.

The truth is also that I’m a bit of a perfectionist.

I scan my email first thing in the morning. I know, I know, nasty habit, but the other day, there was an assignment from my Master’s program sitting there. The email came in at 6:20 a.m. my time (my instructor makes full use of his days, too).

I open it and scan for my mark. I cannot tell you how much I enjoy receiving a grade because it’s shameful. I like it way more than I should. And this has led me to the conclusion that I’m a total pleaser.

Another truth. After the first assignment we got back, it wasn’t enough for me to know I got an ‘A’, I had to know what grades my peers received. How did I compare. One friend got the same as me, and another scored well, but slightly lower. I felt sick at myself for asking; I regretted the words the moment they came out of my mouth. My intention was not to make someone else feel bad, but to make myself feel good. I am a hedonist. Pour pleasure over my body, please, send good grades my way, fill my pot until it overflows and I’m good and wet. Now boil me back down with the work that it takes to get me to that point. I’ll take sick pleasure in the repetition of striving for success.

And that’s what it is, isn’t it – “success”? To reach success takes grit, determination. Pain. Refusing to quit. The willingness to boil oneself down again and again until there’s nothing left or the pot is full to overflowing.

When I do quit, and by quit, I mean cease to be the “good” mom, the “nice” mom, the mom who doesn’t yell at her kids, then as hard as I am on my kids, I am that much harder on myself. Don’t ever feel the need to shame a mom; no one can shame her better than she can.

I drop my kids off, then sit inside my house on the steps, feeling like a failure when the doorbell rings. Knowing I am sick, a friend decides to stop by with a treat. She sends me a text to let me know the treat is on my windowsill. She has left my favourite drink and a dessert. What act of grace is this? I feel completely undeserving. Isn’t that what mothers do best? But I allow myself the first sip, anyway, pour pleasure into my body. Nothing bad happens, the kids are at school, this time is my own. I sit in silence. I slow down. I acknowledge gratitude for my friend, I acknowledge I will try and do better next time with my daughter and I forgive myself. I sit down at the keyboard, latte by my side, and begin to type.

I acknowledge parenting isn’t easy, and I’m not perfect, and truly, I don’t want to be.

The Chimera

I’m back at the cottage. The chickadees are here – we call back and forth to one another – so is the rain. But I don’t mind the rain; I’m here to work. The brightly coloured ground is wallpapered with leaves. Inside, the whirl of a heater, a light sucking sound – or is it blowing? Last night, standing outside in the dark, complete silence. This is my definition of a retreat.

I do have a friend, a fury companion. I take him outside for his walk this morning and he refuses to budge from the doorframe. It’s raining, he communicates with his eyes. My pretty, prissy dog. Instead he suggests we play inside, nudging his rope toy into my leg, coyly letting his teeth graze my skin from time to time, just enough to goad me on. I am reminded of the fox from The Little Prince.

“You are pretty,” the prince tells the fox, “who are you?” The fox explains he is a fox and that if the little prince wishes to play with him, the little prince must first tame the fox. Louie is mine, I have tamed him. And now he is unique to me in all the world. But the fox’s words are almost a warning: once you tame me, I will be sad when you leave. The fields of wheat will remind me of your blond hair. We are responsible for that which we tame, and so it is between my vizsla and me. I am here to write, to work, to run a retreat, but I am also responsible for the things I have tamed. We can never completely leave the world behind, can we?

Later, we walk along the driveway and something inside Louie lets go, unclenches. He tears around, digging in the earth, then runs up a storm. Whatever it is that is wild inside of him has broken free. This is who he is, I think, this is instinct. I take him outside to be free, to be who he is. A wild animal. He runs at me full speed, his muscles uncoil as he jumps up at my chest, mouth open, gnawing at my arm.

“NO!” I am firm with him, grab his collar. It’s as though he’s forgotten himself, the dog we’ve tamed him to be. Oh, right. He sits politely, looks at me with those puppy eyes. “Okay,” I tell him, “go play.” Released, he’s off like a shot. Then a minute later attacks me again, playful but rough. Both my pet and a wild animal.

On another day, Louie and I are running together, and something miraculous happens. The moment is like a chimera, an illusion or fabrication of the mind, an unrealized dream, except it comes true.

Louie runs alongside me wearing a black fifteen-foot leash. If I see another dog or human coming, I can easily step on his long rope, or catch up to him and reign him in. I’m teaching him to come back to me when we see other people, but he isn’t perfect at it yet. Remember: taming, wild animal. He’s in training. The leash trails behind him, and bumps and shimmies across the ground like a snake. Louie and I are often close enough during our runs that I have to avoid stepping on his leash, which otherwise causes him to roll and tumble to the ground (sorry, boy). The leash’s movement makes it seem as though it is alive: it’s a trick of the mind and the eyes, and I constantly remind myself it is not so, the leash is an inanimate object being trailed along the ground. One minute I’m running along, the next minute the leash turns into a long black snake, slithering along in the shape of an ‘s’. The chimera becomes real.

I am running along and the end of the leash does turn into a real snake. I have to hop over the reptile to avoid stepping on its long body. The snake was likely sunning itself on the dirt path, when down comes my wild animal, clopping along, barreling full speed along the trail, disturbing the snake from its rest. The snake scurried off in my direction, appearing to materialize out of the end of the black leash the same colour as its body.

“Oh!” was all I could manage as I hopped over the snake the length of my arm.

This has to mean something, I tell myself, jogging along. Leashes don’t just change into snakes for no reason. Maybe it’s what is real isn’t as it seems? Maybe it’s about creating something out of nothing? Maybe it’s about life materializing? Maybe it’s about being at the right place at the right time to witness a miracle, or the wrong place at the wrong time, depending on how you look at it? Maybe the snake carries no meaning at all, the three of us just passersby in the grand scheme of the universe? But I think I know better than that. Maybe it’s about watching where I step, about learning to see what’s in front of me? Literally, what I am almost stepping on. Maybe the snake was a warning, a sign to turn and run, or a gift of the inanimate being made real? Of my worst fear, that of the leash or rope, actually being a real snake? Isn’t that one of those things many of us fear when we’re outdoors. That that stick over there is a snake that might curl around our arm and bite us? It’s funny how the snakes we encounter in Canada really have no interest in doing that, but my dog, the one I’ve tamed, he’s game.

The gift of meaning was in seeing the leash come to life, in beholding the real live snake, and then jumping over it. I did not scream; I did not feel in the least bit inclined to. I’m no longer afraid of snakes, because I’ve taken the time to get to know them a bit better. When we know something, we fear it less. And of course, as I jogged along further, I came to see the snake as representative of my little girl with Down syndrome. The end of the leash could never become real, just like how as a twenty-eight year old woman, I could never give birth to a baby with Down syndrome. That would be my worst fear. Then she was here, and I held her in my arms and saw that fear was only a fear of the unknown. That everything is knowable, and that it is fear that drives us apart. And that my little girl would become unique to me in all the world. She would tame me. It’s not that I wasn’t surprised, that I didn’t jump or that I would act perfectly, as her mother, all the time, but what once seemed scary, no longer held its power over me. I would see the world anew, and I would jog along just fine.

Not One Excuse

Editor’s Note: Our daughter’s school and educational team are extraordinary. We feel fortunate and grateful to have such dedicated educators in our corner and thank them for all their hard work to prepare for our children’s return to school.

It is my expressed wish that not one student with a disability will experience barriers to receiving an inclusive and full educational experience this year.

I’m addressing this piece to no one and to everyone who will listen. This is a projection of my fears as a parent to a child with a disability, magnified, but not unjustified. This piece is not to assign blame or elicit shame or to drag up the past or point a finger or a projection of any behaviour I foresee. The honest sentiments that follow are about how I want to move forward this school year, no excuses. I know I am not alone in having these feelings.

 

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education this year. Parents who have children with disabilities, we are worried about this. I do not want even one excuse. Not a global pandemic. Not a new teacher, a new year, not a new anything. Not my needing to be polite, or to give people time to figure it out on their own that my daughter is able. Not any litany of excuses: we’re getting to know her, she’s tired, we’re just getting back into the swing of things, or list of things they didn’t know about her, because here are the things they need to know about her: …that she should be doing group work, that she should be writing tests, that she should be keeping notes in an agenda with all of her peers; that she can read, that she can write (albeit large – large is okay!) that she can LEARN. That she is an intelligent girl. She may learn differently and at a different rate, but learning differently at our own pace is okay too. People who learn and think differently have drastically changed the world – for the better. Nobody ever questions how long it took them to get there. Different is not an excuse.

I do not want, one more time, to have to go over all of the things that my daughter can do, to have to elucidate her capabilities, one at a time, but my god I will. Because parents of kids with disabilities, if you don’t, if we make assumptions that others understand, if I assume that the teachers’ assumptions are the same assumptions as mine, that Elyse’s educational assistants who spend the day with her know what our expectations are, then, well guess what? Somebody is going to be misinterpreted, and then somebody is going to be left feeling disappointed, and more often than not, it is my daughter, my exceptional daughter, who is going to miss out.

I do not want to hear the excuse of “so-and-so didn’t know.” I am the one who makes that excuse, on behalf of well-meaning individuals, but I’m not going to do that anymore. Because they will know. Because I have told them. Here is what my girl can do. Because they can ask me.

I do not make demands and expect that the school is an island. I set expectations that the school and our household will help meet together. We will read with Elyse at home, no excuses. We can review concepts she’s struggling with at home, no excuses. I will sit down and plan how she can be properly included in her classroom, how to help her participate fully, and I’m happy to do this if it will help my daughter, but what I will not accept is any excuse for why it is not happening. No excuse will do as a substitute for full and proper inclusion and education. Insufficient funding – nope. Insufficient knowledge – nope. A lack of empathy and caring – definitely not.

I will not let my schooling get in the way of my daughter’s schooling. My husband will not let his work get in the way of our daughter’s education. My daughter’s education is not just my responsibility. Mothers are not solely responsible for their child’s education. I repeat: mothers are not solely responsible for their child’s education! No excuses, fathers. No excuses, men. I will not do all of the heavy lifting, but I will carry my fair share of the load.

I do not want one thing to get in the way of my daughter’s education. Not one bias. Not one prejudice. Not one more ableist assumption. Not her sister being in her class, or her glasses fogging up, or wearing a mask or needing to go to the bathroom. I do not want to hear it. Find a way. I will help, and so will my husband, but find a way. There is no excuse for denying a child their right to an accessible and meaningful education. Excuses are a waste of time.

I do not want even one excuse to get in the way of my daughter with Down syndrome’s education.

Genuine situations, honest mistakes, empathy, compassion and kindness, always. But any excuses have got to go.

 

Good, Bad, Who’s to Say?

There are two sides to every coin.  Heads or tails?  Well, depending on the side you are rooting for, which way you’re betting, one side is perceived as ‘good’, the other side as ‘bad’.  This narrative of good and bad plays into so many aspects of our lives, but lately I’ve been thinking about it in the context of how we view others.

I came across an engaging well-thought out TED talk by Heather Lanier (thanks Sue Robins for introducing me to her work) about the problematic nature of framing stories as ‘good’ or ‘bad’.  Lanier explains through the use of an ancient parable that “’Good’ or ‘bad’ are incomplete stories that we tell ourselves.”

The ancient parable of the farmer goes like this:

There once was a man who lived on a farm with his son and his horse.

One day, the barn door was left open and the horse ran away. When the nearby villagers heard about it, they ran to the farm to tell the farmer how sorry they felt for him.

“How will you work your farm without your horse?” they asked.

The farmer simply shrugged and said “good, bad, who’s to say?”

A few days later, the farmer’s horse returned, and following it were two more horses. The villagers were so excited for the farmer’s luck, they ran to his farm and told him so.

The farmer simply shrugged and said “good, bad, who’s to say?”

The new horses were not broken in, so the farmer’s son worked hard to break them in so they could be used on the farm. While doing so, one of the new horses threw him off and his leg was broken.

The villagers again ran to the farm and expressed their deep sadness about the son’s broken leg. “Now your son can’t help you on the farm,” they said with their heads hung low.

The farmer simply shrugged and said “good, bad, who’s to say?”

As the son was healing from his broken leg, a war broke out in the countryside. All the young men were sent to fight. Many died or were seriously injured. However, since the farmer’s son had a broken leg, he was not able to go. The villagers again came to the farm, to say to the farmer how very lucky he was that his son didn’t have to go fight in the war.

Once again, the farmer shrugged his shoulders and stated, “good, bad, who’s to say?”

This parable teaches us to simply be a witness to life’s events.  The idea being that peace is found by observing the events of life and removing all judgement; by sitting back and witnessing without trying to attach labels, and avoiding life’s dramas.

The principle tenant of Buddhism is that craving leads to suffering.  Either craving for something good to last or craving for something bad to end.  One who does not crave, does not suffer – or so the idea goes.  In meditation, the goal is not to judge the thoughts that come into your head, but to let them flow through your mind and watch them from a distance. Thoughts are not labelled as good or bad, nor are they held on to.  They are let go.

Wow.  This all sounds pretty good, doesn’t it?  Letting go of notions of ‘good’ or ‘bad’; meditating and watching all kinds of thoughts float by without attaching meaning or significance.  As a writer, I often try to do the opposite: I latch on to words, haul them in, examine them to death, then stuff them into a basket full of other used thoughts and ideas.  But perhaps I need to loosen up, disassociate from my body a little bit more.  My body is so needy, temperamental; it’s cloistering to the mind.

I received a rejection note this morning for an essay I wrote.  Good or bad, who’s to say?  Maybe the piece will go on to be accepted in a more reputable journal or will lead me to a connection and long-lasting friendship with an editor – who knows?  Maybe it’s eventually printed at a time when the person who needs to read it, reads it.  I can’t help but yearn toward the positive.  However, maybe the essay never gets published.  I have to be satisfied with the idea that the essay just is.  Pain and pleasure, bad and good.

The other day, out on a drive, I turned right at the last minute onto a path I hadn’t planned to go down.  I discovered a beautiful trail; the kids loved it.  Later that day, I swatted at a bug on my knee, assuming it was a horsefly, and got badly stung by a wasp.  So the story goes.  Good or bad, who’s to say?  The key is to remain open; to abstain from judgement.  This is not the same as being passive.  Even meditation – sitting being, seemingly doing nothing – is an intense exercise of the mind.

When I leave for my run this morning, I will either feel good or bad and I’m going to try to not attach meaning to those feelings.  Today’s run doesn’t necessarily signify that I’m a good runner or a bad runner, that I’m in good shape or bad shape, it is just how I’m feeling today, at this particular moment.

I see the value in letting go, but a part of me needs to rebel against this notion of watching our feelings pass by without judgement.  I’m quite attached to my feelings.  I’m all for letting the feelings that are hurtful and painful pass through me, but I’m not so willing to let go of joy and happiness.  I want to fully inhabit my body in these moments.  But we don’t get to choose.  One minute, joy, a new path; the next minute, pain, a wasp sting.  Life is just like that.

When it comes to people though, I see how this principle need apply.  In my own life, the good/bad story has played out like this: the initial Down syndrome diagnosis – pain, bad; getting to know people with Down syndrome – joy, good.  Over and over, in different contexts, the story repeats itself.  My greatest realization of all, through years of reflection and learning to withhold judgement, is that: Down syndrome just is.  And so the story goes.

 

Black Lives Matter

“I can’t breathe.” ~ George Floyd.

Pockets of the United States have descended into chaos in the week since Floyd died in Minneapolis after a white police officer pressed his knee into the 46-year-old black man’s neck. ~The Washington Post

“Peace on the left, justice on the right.” As if to say the two must go hand in hand. ~Terrence Floyd, George Floyd’s younger brother.

I’m having a hard time concentrating.  I want to say something about what has happened, about racism; I want to speak out against the grave injustices of this world, but there is so much I do not know I’m afraid I’ll get it wrong.  I don’t want to offend by not saying the right thing, but I feel a tug, an incessant urging to say something and get over myself, and people are dying – so.

I realize that as an advocate for those with Down syndrome and the disability community, there is one core tenant of advocacy that I hold dear: the view that all human beings are equal.  That I hold people with equal weight in my head and my heart.  I believe in this mantra, we are equal, we are one, but if what has happened and reading the news and following threads on Twitter has taught me anything, it is that there are just some things you cannot see unless it is happening to you.  I am not a black man or a black woman, and so I can’t speak to that experience; I can only seek to educate myself as to how people of a darker skin colour than mine inhabit the world.  I want to know.  And I don’t want or seek to speak for black people – or a person of any skin colour – any more than I desire to speak on behalf of the disability community.  As an able-bodied white woman, I can be but an ally, a supporter.  I would like to declare myself as such.  That means I am actively going to seek out a black perspective in the books I choose to read for myself and for my children, in who I choose to follow, in the diversity of the people I admire and learn from.  The more we know about each other, the more we know about ourselves.  The more we see ourselves in the other, the more fully human we become, I believe.

And sometimes I get so angry about the way we, society, treat skin colour; the same way I feel angry about how people are judged based on their cognitive ability.  The amount of melanin in a person’s skin; the count of a person’s chromosomes; the size of their frame; the sex or gender of their partner.  These factors do not define the person as a whole.  We are more than our bodies.  We are beings of heart and soul.  And our bodies, in all their shapes, sizes, orientations, limitations, colours and creations are beautiful; we are flowers, the fruits and labours of love.  And my soul is aching, wholly aching, for the pain needlessly caused because of hatred for ‘the other’.

“Injustice anywhere is a threat to justice everywhere.”  Martin Luther King said that.  I saw those words written on the side of a building once and they said something to me about how I felt deep down inside.  I’ve mentioned those words before, but they come back to me now because there are injustices occurring everywhere and I can’t pretend – don’t want to pretend – I don’t see.  There are so many people whom I love and care about who have black skin: people I’ve worked with and who are in my family, who’ve married my friends and who are my friends; people I write with or who live in my neighbourhood and I don’t want to let them down.  If I have a voice anyone is listening to, then I want to use it for good.  We have that choice.  Those of us with privilege.

I don’t believe in black and white narratives of good guys and bad guys.  That all bad guys are white and good guys are black, or vice versa.  There are black men who have done wrong and black men who have become president and done so much right.  There are white men who have done right and there are white men who have done so much wrong and become president.  Privilege.  Power.  Those who abuse it.  Those are truths I believe in.  I don’t believe in black or white narratives, but I do believe in things I can’t see, that can only be felt.  I do believe in a racism so ingrained in our society, we can’t even pinpoint it, but we can feel it; we know it exists and we cannot sit idly by.  Because when it slips out, becomes seen, it is deadly.

George Floyd is killed on camera for the world to see; and we do see it, we see it plain as day, right there on the street.  “You’re killing him, stop!” wasn’t enough.  Simply asking wasn’t enough.  His murder is a crime against humanity.  Against men and women, mothers and children everywhere.  George Floyd was somebody’s son.  He was once held, a babe, safe in his mother’s arms against her warm chest.  One of his final words was “mama,” he cried for her, for help.  Nobody saved him.  A man took his life.  And now we are left to weep.  We are left to weep and wonder what could I have done?  We rightly wonder, what can I do differently now?

We can raise our voices to denounce hate.  Even the hate lurking that we cannot see.  We can actively seek out the voices of the other.  What do black activists have to say?  Those are the voices I want to lean in to right now. Those are the voices who have my ear.

And if you aren’t an ally to the other, you aren’t an ally of mine.

 

What Would Happen?

What would happen if you followed your dreams?

 What would happen if you followed not just your dreams, but that little voice in your head, the one you want to ignore because it completely throws the balance of your life into chaos; that voice with the cord that attaches itself all the way down to your heart.  And when that heartstring is pulled, there is no ignoring its song because it’s playing your tune, the tune of who you truly are.

What would happen if your baby was born with Down syndrome and that caused you to question many long-held beliefs that had you standing on shaky ground.  Would you then look around at the people standing next to you anew, with a startling clarity?  Would you live your life differently, follow a different path?  Maybe.

What would happen next?  Well, your baby would be born and you would be a mother or father, of course.  Personally, I have never really embraced the term ‘special needs mom’, but if that floats your boat, you do you.

You would research the proper use of language to be able to use it correctly with your own child.  Was it ‘Down syndrome’ or ‘Down’s syndrome’?  A person with Down syndrome (lower case ‘s’) is the correctly spelling and usage in North America, while in the UK, Down’s syndrome spelled with an apostrophe is the norm.  You would read and you would learn and, something new – or perhaps, not new, just reimagined – you would write.  You would write a blog and one day – today! – you would have been writing that blog for almost nine years, because you started when your first born came along as a way to keep in touch with family far away.

Then what if that blog became something more to you?  What if that blog became a story you needed to tell the world?  What if you wrote a newspaper article, just one.  Just one measly article – what could it hurt?  And what if the rush from that one published measly article and your hope to help create a more just society for your daughter would then inspire you to write more, to keep going, to dig deeper, to settle right into advocacy work.  And what if then, you joined a board of a local Down syndrome association and you met families, many wonderful families, who have children with Down syndrome, families you may never have been fortunate enough to have met otherwise, but they didn’t really have a regular place to meet – so what if you set that up?  What if you coordinated a meeting place and what if you showed up there, who else might you meet?  And what other stories would be told?  Many.  And what if those stories filled your head and some danced for joy and others sank with sorrow into a sea of tears that needed to overflow onto the page?  What if you could write about…all of this.

What would happen if you looked for a memoir on the bookstore shelf written by a mother who had a child with Down syndrome…but there were none, well, when you dug deeper, there were a few, but none quite as young or Canadian or as uniquely…you.  None with your story to tell.  Well then.

What if, scene by scene, chapter by chapter, you began to write your story down.  What if your story were to unfold before your very eyes as you devoured books on disability and memoir.  What if you read one hundred books a year, for three years in a row, mostly memoir – would you know how to write your own then?

What if you could receive an education by doing, by living, and by reading voraciously?  What would happen if you threw in every ounce of emotion you ever felt (leaving room for the emotions of the reader: pro tip), and let it simmer for a while, for a few years and then when you were in the exact right place in your life, which is to say, pregnant and planning to move, which is to say – right in the middle of it – you were to write that book, the story of receiving a prenatal diagnosis of Down syndrome with your daughter?

And during the process of writing a memoir, what if you were to learn something?  About storytelling, and time management, and publication, and copy editing, and narrative arc and plot and weaving in themes and cutting out crap.  What if you were to learn something that could be useful to others beyond the obvious of getting that book about Down syndrome out into the word?  What if you could find your voice.

What if, in the process of writing your memoir, you dreamed up a whole new career for yourself.  What would happen if writing became more than therapy, if it became your lifeblood?

Just what might happen if you decided to take writing seriously?  You couldn’t do that, could you.  That might be too selfish, play too directly into your deepest desires – or could you?  Well, if you keep writing, if you work hard at it, you might just face a whole lot of rejection, and then you might get published in a magazine or two, and you might see more of your name online and in print, and one day, (hopefully soon), you will see your book published, the one that took you three years to write.  And by that point you may very well think of yourself as a writer.

You might decide that while writing is writing and writing is everything, that money and making a living is important too.  You might become an editor on the side and of course, given your background and inclinations, you might consider furthering your qualifications and continuing your education to better be able to teach writing.  You might then consider getting your Master of Fine Arts in creative nonfiction, because you’ve always wanted to do your Masters, you love education, and while you’re waiting to do that, because your children are still growing up, why not travel the world with them?  You never know what could happen, so better plan that trip fast.  What if your travel agent should tragically pass away, would that thrust you into action?  It did for me.

And what would happen, if you decided that you love to write so much you’d like to attend a writer’s retreat?  Let me rephrase that with the truth.  You want to go to a writer’s retreat so that you can learn how to run your own.  Then what would happen if you just went ahead and ran your own writer’s retreat anyway?  Would anybody come?  Would anybody care?  In other words, if you build it, would they come?  And would you come into contact with more wonderful writers?  Would you have a chance to share new viewpoints and explore the world through the eyes of these dazzling women?  You would.

Then what would happen if you wanted to keep your retreat going.  If running a writer’s retreat became an important way to connect with others and use your skills as a teacher and a learner and a writer.  What would happen if you one day envisioned hosting retreats of your own, in your very own special place?

Then one day, what would happen if the world as you knew it fell apart.  If all sense of normalcy was erased.  Would you crumple to the floor and refuse to get up?  That would be understandable, if that’s where you needed to lie.  And some days you do.  You lay there motionless, watching the world pass you by.

But what if you held onto hope, and let the heartstring pull and listened hard to your own inner music?  Might you remember your retreat, and the second book you are going to write and the MFA program you got accepted into and the people who are counting on you?  Even if no one is counting on you, what would happen if you rooted for yourself?  Became your own biggest fan?  You’re #1 – go me!  What would happen if the cheers in your head became louder than all the noise of the outside world?  Not in denial, but in defiance and with reverence to all that you are and can be.

What if you thought about buying your family a pool with the money from all the cancelled plans of the summer, but then instead you thought, no, I want to buy a cottage. What if that would cost you everything you had, but would bring you closer to the people you loved?  To the nature and the water you worshipped?  To following your dreams and dancing to the tune of your heartstring.

Would you listen?

I think I just did.