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.

 

 

Leave

I want to be upfront about something. I love my family; I am grateful for my quality of life and the joy I get from spending my days writing. I love my husband who keeps me particularly happy and understands my humour when I call him “pony” and tell him to “make it rain” a pros pos of nothing, at least not something I could explain out of context (or in context). I love having my kids in school and I feel an extra abundance of affection for their teachers this year who educate them during the day. After Covid, maybe all parents of school-aged children are feeling this way? I’m having these fond feelings while simultaneously repeating a silent mantra in my head. One that keeps popping up. Leave, the voice whispers. Just go.

I’m completely happy in my work life. I love my Master’s program, engaging with other writers, having my work reviewed and receiving feedback and criticism and giving that gift back to others. And attending literary events. I’m mostly new to the scene of book readings, workshops and panels and it’s been such a rich experience. But I’m missing something. Something Covid has taken from me.

Freedom.

The freedom to connect with others in person, to gather over the holidays and, especially, to travel. I miss travelling. I miss traveling the way you miss an old friend, deep in my bones, like a visceral ache, a phantom limb. The world was there to explore, full of enjoyment and novelty, and now it’s not.

The other day, I was in the middle of an online poetry reading session, one that I was truly enjoying, when my eye caught the bottom of the Zoom screen window. The word ‘LEAVE’ stared back at me in bright letters. Leave. LEAVE. Yes! That is exactly what I want to do. That voice inside me screams louder.

I want to go away; I want to leave right now and be gone, away from here. I tell my husband, “My brain is sick of this place.” I am fine, physically, but my mind, my mind is not. I spend most of my day in the same room where I work, sleep and often eat. My mind is craving something new. An adventure. An escape. LEAVE.

I want to plan a trip, NEED to plan a trip. I pull up travel advisories and wow, that’s just a whole lot of red. The world is bleeding.

I’m in the head space where I want a vacation to look forward to, a means of escape to break up the dreary winter months ahead. I regularly feel that pull this time of year, but this time, no amount of planning is going to make any difference. Covid will decide when and if I go anywhere.

And I know, I know, this is a small loss in a sea of loses. Only a drop into the pool of our collective tears. But it’s how I’m feeling. I’m feeling the loss of experiences I would have had. I’m feeling the activities that have been taken from a chunk of my kids’ childhood. I’m feeling like my home has become a box, or so the story goes at bedtime, “The mommy lives inside a box and the walls keep getting smaller and smaller.” Penelope’s eyes grow wide. “Oh no!” she says, “what happened to the mommy inside?” It isn’t good. For one, she feels squished, which makes her want to lash out.

Space. What an interesting construct. Physical, as in measurable dimensions, but more so, mental, parameters of the mind. Having my husband work from homeis wonderful in so many respects, but before, pre-covid, he travelled extensively, and I was used to his absence, to filling that space. Now there is no space to be filled, instead there is overlap. And even when he was around before, he drove on the daily to his office. I had days without children that were to myself, when I had to cater to no one’s needs but my own and the needs of my work. Not so in the days of Covid.

“Don’t take this the wrong way, but I’m a bit sick of you too pony,” I tell him, not unlovingly. But it’s more than that. I’ve been a ‘stay-at-home’ mom for the past nine years. Finally, FINALLY, and I have been waiting a few years for this, I was getting to the place where I no longer felt like the mommy-in-a-box, caged in. I chose to be home looking after kids and then chose for that time to end. I was regaining my freedom and autonomy. I signed up for my Masters that included two weeks away, AWAY per year and I was so SO excited about that prospect. A break from my family AND the chance to hang out with writers and just write? With the bulk of my time spent at home with my family? Perfect. I was euphoric to be accepted into the program. The trip out east. The New York City getaway. Both since gone virtual. That low-residency piece was the cherry on top. Covid has eaten the cherry, and some of the cake, too.

This isn’t just about me needing time away for myself, but it is that too. I’m better for my family when my own needs are met. And I care about them receiving the best version of me, a mom and wife in a healthy head space, not the mommy-in-a-box who feels claustrophobic and desperate. At this point, I don’t even know if what I need is to go somewhere else, or if just knowing that I could go somewhere else would be enough. I suspect the latter. Call me spoiled, but I don’t do well with being told I can’t.

Over the last few years, I’ve gone on trips by myself. These might be for a conference or to visit a friend, but they are scheduled time away. That space worked its way into my life because I needed it. We all have different needs. Mine involves space and time to myself and in Covid-era, this has become impractical, unsafe and in many instances, impossible. Even going to the library has become perilous.

I am not oblivious to the rest of the world’s needs, but I am acknowledging this one small loss, because maybe, just maybe, you feel your own version of stuck-in-a-box. Covid has pushed the walls of our world smaller.

While instant gratification is nice, I do seem to have a knack for the long hall. Writing a book. Long trips. Marathon training. My marriage.

Waiting for Covid to go away is my least favourite activity, but in this case, I want to be around for the long haul and so I will hold off on the gratification piece. Other than solitary dog hikes in the forest, I’m mostly staying home. Sometimes sitting on my hands, watching my mouth, pulling at my hair. But I’m staying home to keep my family safe. I’m staying home to keep your family safe. I’m working through my personal frustrations and dissatisfactions because it’s the right thing to do. I’m pushing back against the walls closing me in created within the confines of my mind. I’m especially holding onto memories of past travel, allowing myself to dream about a near future where everyone is vaccinated, the world is safe again, where I could go somewhere if I wanted to and hoping this small grievance and annoyance is all I will have to face.

For the time being, I’m relying much more on a cheaper method of travel. Leave, just go, the voice whispers. And so I pick up a book and fall inside, and that world has never been more appealing.

 

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.

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.

 

Living On A Cloud

I spent the summer after third year university inhabiting une petite village in Quebec as part of a cultural exchange program through Western University. I was joined by students from around the world, but mostly other Canadians like me. The summer was rife with love affairs and love triangles, some that lasted months, others that lasted five weeks (the duration of the program). I meant to leave after five weeks but was having so much fun immersing myself in Quebecois culture, I planned to stay the entire summer break. I spoke in French every waking minute and when my parents came to visit late in the summer, English felt heavy on my tongue, stuck in the back of my throat.

At one point, while visiting a campground where my host family had a trailer, I was riding on the back of a golf cart with a friend. My friend turned to me,

“You know this isn’t real life here, right? We’re living on a cloud.” We laughed; he was right. Our love affairs here didn’t really matter, because this wasn’t real life, right? Real life was where we towed the line, where our decisions impacted our actual reality. Quebec life was…elsewhere.

This summer, once again, I am undoubtedly living on a cloud. Life at the cottage hasn’t been perfect or without its dramas, but it’s been safe, sheltered, illuminating, often peaceful, infused with beauty, nature and life. The proximity to the lake, mere meters, is my greatest joy. I swim every day. Living here has felt more real than my real life.

The realities of school and Covid and returning home to rebuild our past life feel heavy, stuck in the back of my throat. I feel like I’m heading toward a different kind of life on a cloud, a storm cloud, not the kind of cloud you want to be on at all. No love affairs, only the heavy fog of disease that surrounds us. The reality of children being sent back to school, only to be exposed to illness; the slight sign of their humanity, a dripping nose, sending them straight home again anyway. Is there even going to be school for families who have young children, especially families, like mine, with a child who is more susceptible to getting sick? I can’t help but feel the words, “only the strong will survive” like a punch in my gut.

On the storm cloud, it rains every day. It rains down responsibilities, broken promises, false hopes and dashed dreams. While the school system in place isn’t perfect, I feel like I have to try, working parents, parents who are full time students, we feel like we have to try to send our kids back. What’s the alternative? Who’s going to look after them at home? Apple tv? Their iPads? Yup and yup. Technology is both a blessing and a curse. And we’re lucky, LUCKY, to have access to that technology that is both a blessing and a curse. What about those kids who don’t have access? Who aren’t so lucky?

Normally the start of a new school year is like the sight of a rising sun ahead, all blustery blue skies and white fluffy clouds. The sun-man is wearing cool black shades and a big smile with happy sunrays shooting out of his head, a backpack on his smoldering shoulders. I feel like Covid killed the sun-man. I picture my children, their cute faces hidden behind masks, sequestered at their desks all day long, afraid to touch one another, just hoping to be able to attend school because their parents are so tired of looking after them, of trying to be everything to everyone that they can’t keep it together anymore. School is what they desire; that’s what we’ve come to.

Nobody chose this, I know. I also know I will be one among many mothers who are pulling out their magic markers and drawing a squiggly sun-man in their kids’ skies, trying to keep things together, to keep those clouds above looking glossy and bright. I will simultaneously draw a happy face across the squiggly line of my own mouth, because that’s what mothers are expected to do.

But I won’t be happy, and my kids will know that.

I will not be happy to give up my time to write. I will not be happy to put my future on hold. I will not be happy to do half a job. I will not be happy with having people in my workspace. I will not be happy with a disgruntled, stressed out partner. I will not be happy to see my kids at home when they should be at school. I will not be happy if someone in my family gets sick. I will not be happy when there is an outbreak in my community.

My unhappiness is but a drop in the bucket, but I wanted you to know. To the mothers and parents feeling stressed, you’re not alone.

The Curious Incident of the Frog in the Night

I’m a sentimentalist, it’s true.  I am guilty of romanticizing life at the cottage, both to myself and to others. I tend to focus on the good feelings and not so much on the bad experiences. And there’s merit to this, to being an optimist, to seeing the glass half-full, to finding the positives and looking on the bright side. To letting one’s self get swept up in the moment. But we all know that darkness lurks somewhere in the shadows.  I can’t remain clouded to what is difficult and unseemly to write about or I risk only telling half the story – that which is saccharine, sickly sweet. (See Leslie Jamison’s essay, In Defense of Saccharin(e) from The Empathy Exams for a further examination of this topic).

There’s the fairy tale version of our summer stay and the darker elements – the truth of our existence here lies somewhere in between.

Let me tell you a sinister story, reminiscent of brothers Grimm.

Once upon a time there was a princess named Penelope who loved to pick up frogs and toads. All day long, she caught the frogs, watched the toads and cradled them in her hands. At four years old, the little princess was not the best at washing her hands.

Her parents, the king and queen, were very busy running the cottage kingdom, managing three children during a pandemic and working full time. Life in the palace was not always a bed of roses. They argued over responsibilities and often left the children to their own devices. Princess Penelope spent her days down by the shoreline with her frogs.

Now, if this were brothers Grimm, the little princess would likely drown at this point in the story, but stay with me here.

One night, after the royal family hosted visitors for the weekend, the little princess began to vomit. The queen panicked. Was this the dreaded Covid plague?  Her poor baby! What had they done! How could they have been so foolish as to allow others to enter the protective bubble of their cottage kingdom?

Mysteriously, the next morning, after having vomited all night, the little princess recovered. She seemed absolutely fine – better than fine. Life returned to normal with princess Penelope catching her frogs down by the shore. The king and queen stopped worrying about the little princess and fell back into their work.

A week later, the vomiting happened again. This time, there had been no visitors. Was this some sort of evil spell?  No – poison.

The king happened to remember something he once read in a book of potions about toads excreting toxins.

Little princesses aren’t very good at washing their hands. 

Busy monarchs seldom have the time to enforce proper hand washing after every single held toad.

When a toad is squeezed, they excrete a milky poison from their eyes toxic to their enemies. In addition, many water frogs also have bacteria and can carry salmonella, which can lead to some serious intestinal upset. Through further research, the king and queen also discovered that the substance coating certain frogs and toads can be hallucinogenic.  So the story of the princess kissing the frog who turned into a prince – who knows?  Maybe that’s what she thought she saw, high as a kite.

Furthermore, because a frog’s skin is so porous and takes in its environment so readily, holding it in your hand is akin to having someone hold onto your lung. That cannot feel comfortable, and so, perhaps it is best to leave the frogs and toads be.

Now that the case of the curious night vomiting has been solved, his and her majesty have gently, but firmly, instructed the young princess to limit the number of frogs and toads she holds and to wash her hands after handling every single one. Every single time.

According to latest reports, “I’m holding a toad in my hands!”, not much has changed.

And so this story – and her nausea – may continue unhappily ever after.

But, honestly – what can you do?  She’s a kid. Kids are disgusting. And to those who would judge: if you think your kid hand-washes after doing something as dirty as wiping their own ass, check next time, use a magic mirror or whatever you have to do. And when you watch them walk out, hands dry, wipe their nose and pass you by with a grin, maybe then the frog vomiting won’t seem so bad.

Accompanying every bit of life, every piece of beauty, there’s a darker side.

“Oh, I just love the loons!” I told one neighbour,

“Yes, well, they’re not as great as you might think.”  The loons eat the native ducks’ eggs, effectively almost abolishing them from our lake. And the ducks that do survive, another neighbour informed me,

“The ducklings – the snapping turtles pull them under by the legs, one by one.”  One webbed foot at a time.

Nature is murderous, cruel, relentless, toxic. Leeches that suck your blood, wasps that sting beneath the eye. Toads that poison little princesses like a blood-red apple.

At the end of the summer, I’ll hold a picture in my mind of our sweet four-year in a pink tutu bent over the toad in her hand. All eyelashes and a mop of curls. The remnants of salmonella on her small hands.

I’ll try not to get all sentimental over that picture, over the notion of a tiny girl cuddling with her toads, enjoying her warm summer days, the sparkle of the sun reflected in the water, dazzling, under a bright blue sky, the apple of the frog’s eye.  That kind of romanticizing, especially in writing, is enough to make you sick.

 

Blog Post: On Observing Humans

We learn in a multitude of ways.  Directly, from others.  Directly, from ourselves, from the front row seat of the skins we inhabit, with our bodies, our five senses.

I’m standing at the end of our dock in my underwear.  I have de-clothed after a forty-minute run in an attempt to convince myself I should jump into the lake.  The air feels cool, it’s fifteen degrees Celsius and there’s a breeze.  The lake temp is in the seventies – that’s not bad.  Already, here, up North in the Madawaska Valley, fall is sidling in.  A smattering of trees are painted in hues of warm colours.

My toes hang over the edge of the dock, and I’m wrestling with myself over going in when a large white orb torpedoes by under the water right before my eyes.  My first thought is baby sea turtle!  But of course, there are no sea turtles in our lake.  The creature seems too big and moves too quickly to be a snapping turtle.

I don’t have to guess for long.

The beautiful loon crests a few meters to my right.

Wow, I think, surprised a loon can move that fast under water.  To have read the fact would not have sufficed; experiencing the loon move with such streamlined speed and grace is now forever etched in my mind.

I jump in off the dock and feel the water against my skin, warm and not unpleasant as expected.

Recently, we had my sister-in-law and her family visit us at our cottage.  My brother-in-law is a trained and practising ecologist, an environmental consulting expert.  I ask if he’d like to join me on a grueling hike, in the rain; the ascent goes skyward, but the lookout at the summit is dazzling and worth the exertion.  He agrees.

The hike has become a right of passage, an initiation of sorts, to life at the cottage and an introduction to the stark and startling beauty of the area.  On certain days, the climb involves blazing heat and humidity that leaves your neck and t-shirt soaked and bugs sticking to you like Velcro.  On other days, as was the case when my brother-in-law agreed to hike with me, the rain renders the path muddy, the rocks that protrude slick.  On the way down, my foot gives way beneath me.  I catch myself, elbows in the mud on either side of the rock that would have bruised my spine.

“You okay?” my brother-in-law asks.

“Yep.  Close call.” It’s all part of the climb.

I can tell a lot about a person by the way they make it up the mountain.

I power through the path, half at a run pace, treating the hike as sport, legs strong, hopping off rocks with vigour.  Sometimes I pretend I’m flying, while keeping a solid pace.

Dan, my husband, keeps pace with mine, never pulling ahead of me or falling behind.  He knows I like to take the lead and that I expect him to keep up.  We talk amicably, easily, on the way up and congratulate ourselves for exploring and for breathing heavy when we arrive at the top.

“Good exercise!”  We both agree, cheerily enough.

He empathizes over my attire; I would not have chosen to wear a summer dress had I planned this unexpected detour.  He understands my need to plan.  He takes my picture at the summit when I’m not watching.  He offers me a sip of his water, even though I have my own.  He pets our dog and does most of the caring for him.  He poses in pictures with me, even though I know he doesn’t particularly like to do so.  He kisses me, a quick peck, back at the van.  We’re both sweaty.

My brother, my little brother as I call him, sets off up the trail ahead of me, head down, and at a fast pace.  We take turns chasing one another up the mountain.  I think that we are racing and having fun.  We sweat equally hard.  We discourage the dog from biting at our fast heels, equally.  He really appreciates the view at the top, as do I.  At one point, he worries about the dog being too close to the edge.  I agree and we rein him in.  We are both parents.  He is okay with me snapping a few pictures of us, but even having owned a photography business, he takes few to no pictures himself.  I think it’s because he has owned the photography business.  We talk little on the way up, neither one of us can much breathe, but we engage in friendly chit-chat on the way back down.  Afterwards, we chug back water and he thanks me for taking him there.

My friend, a woman my age, approaches the hill with wonder and excitement.  She asked to do it once I mentioned it.  I feel the urge to check back on her as we make our way up, but she shoos me ahead, insisting she’s fine.  She never complains, though her ankles give her trouble.  She is excited about the view before we even get to the top.  She takes many pictures.  She snaps my picture from behind – an action shot – and I pause to take a few of her, too.  I hold the dog and keep him moving ahead so that he won’t bite at my friend or knock her off the edge of the mountain.  The dog is incredibly strong.  At the top, she orchestrates a photo shoot and I oblige.  She admires the view fondly, fully.  She expresses some regret – guilt? – that her husband is not also enjoying this activity, the climb and the view.  She worries about him.  We pick our way back down the trail slowly.  She tells me I remind her of a spry woman in her sixties she sometimes hikes with who blazes along the path, while she often trails behind.

“I want to be fit like her when I’m that age,” she says.

We talk about fitness, how my friend has lost weight – and she has, noticeably – but that she doesn’t weigh herself.

“That’s just a number,” she says.  She goes by how she feels.  I completely agree, though I know my number, more or less.  I know best by the way I feel, too.

At one point near the end, I spot a harmless house fly against her neon green tank top and calmly reach to flick it off.  My friend’s happy and calm demeanor changes, her face drains.

“Is there a BUG on me?”

“Yah, but it’s just…”

She’s flailing her body, shaking her head and hands.

“A fly.”

The offending beast is gone, close call.  We share a little laugh.

My brother-in-law is happy to tag along behind me up the mountain, and I enjoy looking back over my shoulder at the scientist at work.  He is completely lost studying the local flora and fauna.  The ecologist in him shines.  He reminds me of my toddler, always lagging behind on our family hikes, bent over a branch to examine this leaf, or that blade of grass.  His childish nature is glorious to witness.  Simultaneously, there is a meta-analysis happening: the ecologist observing plants in their natural habitat, the writer observing the ecologist observing the plants; the writer taking a snapshot of the scene in her mind; the ecologist collecting samples, “I’ve never seen this before,” he later exclaims, photographing a generic-looking stem he’s collected.  His very words become the evidence of the writer who is the documenter of human behaviour.

I frequently stop climbing and wait for him to catch up.  His eyes never leave the side of the trail, his hands are busy delicately grazing this or that greenery.  We ascend mostly in silence.  He seems unbothered by any physical discomfort the climb is costing him; he’s too busy observing.

Predictably, I reach the lookout before him.  I double back with the dog to make sure he’s okay.  When he arrives, he exclaims, “I want you to show me where this is on a map so I can take (my wife) and kids.”  Also, so that he may document the plant species he has discovered, single samples of which he grasps like a bouquet.  I admire his passion, understand it, recognize it in myself.

“That was great,” he says when we’re done the hike.

I ask my brother-in-law to identify tree species on my property.  I learn that a hemlock, an evergreen wispy tree with droopy limbs and numerous short needles, is one of my niece’s favourites, and where the forest of red pines is at the top of our drive, and how to tell the difference between the white and the red pine anyway: the white pine needles are long and in bunches of five, whereas the red pine have a reddish trunk and long needles that gather in clusters of two.

My favourite new piece of knowledge from hanging out with my brother-in-law the ecologist pertains to the beech tree.  This is where the writer and the ecologist collide.

“They say the trunks of beech trees look like the feet of elephants,” my brother-in-law tells me.  The feet of elephants.  Somehow this line reminds me of a piece I wrote about the souls of dinosaurs.

I have a look at the beech for myself and I have to agree.

 

Hold on Tight to this Earth

The hiss of the tea kettle steaming its siren call rattles me awake.  There’s a small lever on its spout to flick back the lid and once, only once, instead of touching that nubby rubber extremity, I put my finger on the steaming metal.  Only once.  Accidents happen.

Is it a curse/burden or the wild imagination of women, of mothers, to constantly worry/fear/have daymares about the horrible way their loved ones may die or be injured?  Do men have these same fears?

Safety is the illusion, the comfortable narrative we tell ourselves as we hum our way through our days – a hum that can easily turn into a scream.

My brother and his family visit on the weekend.  We go on a day trip to Algonquin park.  Our cottage is situated about forty-five minutes from the east gate.  On our way, as we careen down another steep incline, the speedometer reaching over 100 km/h, I see the sign warning for deer, then I see the sign warning for moose and I can’t help myself, “please slow down.”  I can see the moose appearing from nowhere, hear the crash; I think I’m going to be sick.

On our hike, we spot a stack of boulders with snakes happily coiled up in the sun.  My toddler leans her face in close.  What if a snake were to simply recoil and SNAP.  She isn’t afraid.  She pokes him with a stick, and he slides away.

On the last evening of their stay, my brother and my husband set off to fish in a leaky tin boat at sunset.  Our lake is quite small, but it has pockets of depth, some say up to ninety feet.  Mostly the whole lake is visible, except for a few hidden bends.  As the sun dips further, I walk away from them, turn my back on the water, and walk up the steep incline of our gravel driveway with my dog.  I think, I hope they brought the lifejackets.  We are new to cottage life.  It’s easy to forget your own safety underneath the camouflage of bliss.

I walk back down the driveway with the dog and scan the horizon.  No sign of them.

They had a few beers, I remind myself.  What if they tipped?  The water is calm and secretive.  The lone eerie call of a loon rings out.

Back in my kitchen, as the tea kettle wails, I return a large knife by sliding it into its holster.  What if I missed?  And instead sliced into my hand.  Instead, I am careful, deliberate.  The throaty call of a crow caws out somewhere overhead.

They are around the bend, my brother and my husband, and as the sky fades to black, the stars twinkling overhead, they come back safely to us with fish stories to tell.  The baby fish that ate their worm and caught the monster pike, will someday turn into the monster fish that caught the whale, but there’s no danger in that.

“You don’t have any snapping turtles up here by any chance, do you?”  My sister-in-law tells me a story about the snapping turtle that bit her toe as she dangled on a pool noodle in a lake.  Her turquoise nail polish was to blame, she thinks.  She shows me the scar and I try not to think about it as I swim alone, far from shore, cutting across the lake.  I also try not to think about what if, at this moment, my heart stopped beating.  We do happen to have a lovely snapping turtle, the caretakers of the lake, who likes to visit the fish underneath our dock.

The kids fish and catch fish.  The fish go into a bucket.  The kids and other adults go up for lunch; I am the last one to pull myself from the lake.

“What about these fish?” I call up.

“Leave them, the boys want to eat them.”

I hesitate.  The fish don’t look like they’re doing so well.  One is floating up sideways near the top.  I push aside my instincts.

Over lunch, we ascertain nobody knows how to clean or prepare the fish.  And it seems especially clear that no one is volunteering to kill them or deal with the mess.  Another time.  My brother is the first to head back down to the bucket and the news is grim.

“I think they’re all dead.”  He dumps the bucket of water into the lake in a panic and then realizes he’s just dumped a bucket of dead fish beside the dock.

“No, look!” they’re still breathing, they are just in shock.  Fish swim so that water will pass over their gills.  The bucket provided not enough space, not enough air.  No room to breathe and live.

I am outraged on behalf of the fish.  I can tolerate fishing, but I cannot tolerate cruelty.  That our carelessness has caused the fish distress near death is unacceptable.  Take only what you need.  Still.  One by one they eventually swim away, they live.  Lesson learned.  It’s clear to me who poses the greatest threat and it’s not the snapping turtle.

“How do you keep them safe?” Elyse’s speech therapist is asking me a pointed question, the pointed question, about life at the cottage on the water’s edge.

“Strict rules,” I say.  There’s no going outside without letting an adult know.  No going on the dock period without an adult.  Still.

There’s a sort of marsh on one side of the dock and a beach for swimming on the other side.  The edge of the water is shallow, its deepening slow, only up to four feet by the very end of the dock.  We allow the kids to play at the beach by the marsh.  Still.

One day Dan and I are finishing our dinner.  We sit in the screened in porch with a view of the water and the girls are playing outside.  For one moment, they forget themselves and step onto the edge of the dock.  One peers over the edge into the water, probably looking for minnows, another leans (pushes?) into them and SPLASH!  On one side, our dock is lined with rocks, likely the remnants of an old dock.  Her head avoids the rock by inches.  Dan and I hear the splash, jump to our feet, in time to hear one complaining about being soaking wet, but not hurt.  Not this time.

Louie, our rambunctious pup, weaves through children at warp speed, occasionally deciding to take one out.  We know he does this.  We prepare for this exact scenario.  Keep him on a leash we can grab onto at any time.  Our children, who cling to his neck and pull at his skin and love him dearly, have learned to brace themselves when he gets into this wild state.  Still.

My youngest nephew is but a wisp of a child.  Small for his age of three, which is in itself small; I worried about him the most with Louie.  Sure enough, with our vigilance, which is not vigilance enough, Louie at some point over the weekend, knocked him down two stairs, bulldozed him over in our driveway as we were all saying goodbye, and narrowly missed knocking him off the dock, more than once.  Louie charged full speed right at him on the dock, having escaped an adult grasp, in a frenzy of excitement, and my nephew’s little life flashed before my eyes.  The lake in relief, Louie swerved to the left at the last minute and I scooped my nephew up safely into my arms.

Later, the two of us, just the two of us, took Louie for a walk up the incline.  My nephew didn’t say a word, but held my hand tight, trusting me, as I warded off the dog who wanted sticks thrown for him.  A dog that comes in hot.  I felt like with my hand, I was tethering my nephew’s small soul to the earth.  I daren’t let go.

 

Unable to Perceive the Shape of You

What an odd yet strange and wonderful thing it is to tether oneself to another human being through the act of marriage.  To say, “you’re the one!” with the intention that they’re the one forever.  Until death do you part.  Even after death, we comfort ourselves by imagining our dearly departed waiting for us behind those pearly gates, just on the other side.  Well maybe that’s not exactly how we each envision it; from accounts I’ve read from the other side there are bright lights and an energy, a sort of life force that’s difficult to describe.  A place we go back to from whence we came.  I believe in this energy, in the light that glows within us – ‘our spirit’ – that is extinguished once we’re gone.  It’s a romantic notion, but I have to, I have to believe in living on in some form after death, the way I have to believe in marriage and love.  Both forces are equally dubious yet unmistakeably felt.

I began writing this blog yesterday with the intention of dedicating it to Dan in honour of our upcoming eleven-year wedding anniversary, but the piece took a turn when I remembered a line I heard recently in a reading – a poem, The Country of Marriage by Wendell Berry.  Poems apparently have the power to control your thoughts and fingers typing on a keyboard.  Once I began traveling to the country of marriage through my writing, the piece evolved and transformed itself from the lighthearted voice and tone of my blog post writing into a more lyrical, deeply felt, literary piece you would call an essay, which is, as Cynthia Ozick puts it, “A stroll through someone’s mazy mind.”  Pieces of Wendell’s poem became part of the essay and the basis of each scene construction, forming my own ideas about what constitutes a country of marriage.  You can’t just throw a phrase like ‘country of marriage’ out at a writer and not expect them to pounce on it.  I wrote on that idea with a rabid fervour.  Anyway, you’ll have to read about it in my next book.  I promise tears (mine), steam rising, oppressors, ex-boyfriends, rugged terrain, the torn skin of a scalp, the taste of alcohol, knees pressed together, Down syndrome, and a belly (mine) as full as the moon.  We have gone some places, my husband and I, in our country of marriage.

But this post isn’t all lost causes, because today I remembered another line that I happily dedicate to the man who walks alongside me.

Unable to perceive the shape of you, I find you all around me. Your presence fills my eyes with your love. It humbles my heart, for you are everywhere.

~ The Shape of Water, adapted and translated (likely) from 13th century Sufi mystic poet Rumi

When I heard this, I thought it was one of the most romantic notions conceived, unable to perceive the shape of you.  Rumi is, of course, speaking of God.  Love may be the closest facsimile of divinity I’ve encountered in my life, and so I think these lines are just about right.

Eleven years in our country of marriage, unable to perceive the shape of you, I find you all around me.  Your presence fills my eyes with your love.  It humbles my heart, for you are everywhere.