The day that could have been

March 20th, the first day of spring, and the girls’ due date four years ago. I often reflect on this day as it gets closer. The day doesn’t cut as deep as it once did, especially the first two years; when they were still in the NICU and their due date came and went and the following year where I recognized how strange it was to only have one year olds developmentally when we had already celebrated their birthdays two months before.

Today I wonder about this day. The day that could have been. If the girls hadn’t been born so early, if this day was their birthday and today we celebrated turning four, what would have changed? I wonder about the girls’ personalities, so ingrained since they were still holding down the fort in my belly, but would the resilience be there? Would they still be so empathetic? Would they be the same if their lives hadn’t started too soon?

Raegan recently had an appointment and the nurses kept saying how calm she was! How patient! Most kids won’t sit still! And knowing that normally that girl is a ball of energy I wondered if that calmness came from the experience of being through the gamut as a tiny baby and then after as she grew. Did being born premature normalize being in a hospital more than it would for other kids? Are those beeps and bells a comfort that connects her to her own experience that she couldn’t even remember?

For Ella, has the challenge of physical limitations made her love life more? Her infectious laugh at some of life’s silliest moments could be because her view of life and the world shifted when she had to work just that much harder to get the things that she wants.

There’s no way of knowing for sure, of course, but I suspect that those girls are who they are because they were born ten weeks early, because it took them 80 days to breathe fresh air and have spent years going from hospital to hospital and appointment to appointment that their beings were changed slightly in the best way because I couldn’t have asked for two happier, sillier, funnier, more loving, or empathetic girls, and of course that day changed me, those 80 days changed me, and I couldn’t parent in the way that I do if we didn’t all become resilient together.

And so, happy due date, baby girls, no matter the coulda woulda shouldas, I wouldn’t change a thing about you.

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Happy birthday, little bear

Six years ago, you made me a mum in an epic delivery story that literally involved me being wheeled down the hall ER style before you were born in the middle of the hallway surrounded by onlookers.

You burst into this world and every day since you’ve been asking questions, figuring things out with a never ending curiosity.

Unlike me, you are extroverted; talking to everyone and always making friends. But like me, you are empathetic and compassionate, calm and a bucketful of energy.

I am so proud of the little man you are becoming, or not so little as you tower over your classmates. You are picking up French and excited to learn. You are adapting to change and learning how to handle emotions in the most challenging of times.

You are hilarious and silly but serious about building and the Pittsburgh Penguins. It seems like only yesterday I had you in the baby carrier and now you want to wear shirt and ties.

I long to see who you will become, but also willing time to slow down ever so slightly to soak up more moments with you and your sisters.

Happy 6th birthday to the boy who made me a mum, the boy who keeps me on my toes, and the boy who filled my heart the first time we met. You’re one of a kind, kid, and I’m so proud to be your mama.

Oh motherhood, how you’ve saved me

Admittedly, there are lots of things that children can make difficult; sleeping in, dating, staying up past 9 PM, and finding any relevant solo time. For single parents, we don’t get the opportunity to tag team; to switch off when we’re tired, sick, or just downright done. We are on all the time. Middle of the night nightmare cuddles? Yup. Tantrum at the grocery store full of people judging and staring? You better believe it. Phone calls home from school? Absolutely! It’s constant, and it is mentally and physically exhausting and that’s before even going to work.

But, as someone who struggles with having mental health concerns; trauma, depression, and obsessive-compulsive disorder, I really believe that my kids have saved me. There are days when I feel it in my bones, the extreme loneliness, the isolating thoughts from my OCD and depression, the physical and mental scars burning into my flesh that the idea of getting out of bed seems overwhelming. But, knowing that there are three tiny humans who need me, who need their mama to not only be there physically, but to be present in the moment, it fuels me.

Admittedly, we often find ourselves in survival mode; there is so much to do between work and three different schools and meetings and appointments that just getting through the day seems to be more than the average human can muster. Yet, we manage. In our own crazy way, we push and pull through survival to thriving.

There are days that I look at my daughters and I am simply amazed by them, by their strength, their determination. Those two fought to survive and I feel it is my duty as their parent to show them how wonderful and bright the world can be. To show them double rainbows and the wonders of hot chocolate with marshmallows. No, there will be no more surviving for those two. At one time I wasn’t sure Ella would ever see outside, would ever breathe air outside the hospital, and now, there is no stopping the dreams I have for all three of my kids.

And then there’s Braeden, so big it is hard to believe he was born under seven pounds. I see how much he struggles with feelings and how strong they can be; a trait I believe must come from me. To be overwhelmed with feeling is something I know almost daily, but I have learned to adapt and he will too.

Today began as a dark day – tears and hollowness and then my daughters were in the car singing together, and giggling and Braeden skated, something he has been so scared to do and was just so proud. And they lit me up. Those crazy, off the wall monkeys, they keep me grounded and on my toes but they have kept my soul warm and my heart full, and I am the lucky one who gets to be their mama.

Happy 4th Birthday, baby girls!

Today, my dear sweet girls, you turn four. You have turned the last four years into one hell of an adventure and I expect nothing less for your futures.

Four years ago today, at this time, I hadn’t yet met you. Instead, I was being prepped for my c-section; terrified of what was to come, scared for my tiny babies whose hearts weren’t beating much. But then, you came, two dark-haired warrior princesses. And through thick and thin, we’ve been together. Through the darkest of days, you have made me smile and laugh.

To Raegan, my Itty Bitty one;

Never change. Always be your eccentric, sassy, loving self. I hope your curly hair continues to grow as wild as you. You are so silly, loving, and kind and want to do everything your big brother does. Your love of pandas and babies and dolls is as fun to watch as your love of cars and trucks. You love princesses and especially the bad ass ones, which is of no surprise to me. May you continue to grow and learn. May you explore the world knowing that I will always be here to bandage your cuts and scrapes. May your smile warm other’s hearts as much as mine, and I hope your excitement for life continues to grow as you do.

You will always be my tiny fighter.

To Ella, my big hearted warrior;

May the world know your laughter more than your tears. May you find yourself growing in a place that will accept you and love you for who you are and all that you can do. You have been a fighter since birth and so empathetic to others, so kind hearted and understanding. I hope that never changes; hope your compassion and lightness of heart stays with you always as you navigate a world built to exclude you. I yearn to watch you grow and to become your own advocate more and more. I cannot wait to see you moving on your own. I hope that you always ask questions and that you love finding the answers. I can’t wait for us to explore the world together.

You will always be my big, brave girl.

I am so lucky to be your Mama, girls. My life is a whole new adventure I never saw coming but wouldn’t change for the world as I get to watch you become the people you are meant to be. I love you baby girls, my fighters from birth, my sassy monkeys, my heart. Happy birthday, girls 💕

Happy New Year, Mama

Tomorrow marks yet another year and even more new year, new me pledges. Of course, we all recognize that change is hard but there’s a deep seeded desire to change things; to not remain status quo. This year has been a hard one to witness; a year full of social movements fueled by the daily assaults and microaggressions faced by thousands, a President whose office has sickened me every day where I cannot handle watching the news anymore, countless natural destructions, and the loss of many. It has been difficult to parent in this state of unrest, difficult to sometimes find the goodness in others, and for many of us, difficult to find the ability in ourselves.

So, of course Happy New Year to one and all, but I’d like to leave a note in particular to my fellow mamas.

Happy New Year, Mama. Happiness to you and your loved ones as the year starts fresh. May your littles be tucked into bed at midnight and may a smile or snore find you come the strike of the clock. May your heart be full of light and ready to hold steadfast as the North Star of your family. My biggest wish for you and I is to know how badass we are, how our parenting may be nothing alike but we’re holding it down for our tribe in the best way we know how. And may judgmental glances bounce off our glittering souls as we recognize that we’re doing a fantastic job that is usually thankless, and often unnoticed until we’ve essentially screwed up or let one ball in our constant juggling act bounce to the ground.

Happy New Year, single Mama. You tough as nails strong souled woman who is probably, like me, entering this year feeling exhausted down to your core. My biggest wish for you and I is for us to one day know our strength. For you to wake up, look in the mirror and see your cape flapping behind you. I hope we can see how we’re superheroes; how parenting isn’t meant for one and how it is beyond necessary to remember we are human with our own hopes, dreams, and aspirations and we are allowed to feel loss that we are in this alone, to acknowledge that this isn’t what we pictured for ourselves, or our kids.

Happy New Year, caregiver Mama. For every mum who is caring for a child with different needs, whether it be illness, disability, or injury, may this year bring you and I peace. May we wake up without tears, but with hope. May the grief we experience for our child be lessened; may we recognize that our kid’s awesomeness is at least in part to our own. My biggest wish for you and I is to have a year where we compare our stories less with others’. May the heartbreak we experience as we see other families be lessened, may we know that there is no perfect day, no perfect life. May we see our child’s strength and begin to recognize our own.

If nothing else this year, I hope that I and all the mums in my life, fighting their own battles, wiping their own tears locked in their rooms, know that this job will never get easier, not really, but we can handle it. If we can handle the side eye and the calls from school and the tantrums at the mall, it’s because we were built to handle it, those stretch marks on our tummies or dark eye circles proof that our bodies are strong enough for whatever shit gets thrown our way.

Happy New Year, Mama. May you keep being the mum you need to be and start loving yourself as much as you allow yourself to love others, you deserve it.

This little light of mine

In all the craziness of this time of year; the wrap up at work, present buying, birthday and Christmas celebrations, wrapping, wrapping, and more wrapping it is easy to get swept up into the madness of the holidays. Every night has been filled with either baking goodies to give out or wrapping presents, after spending a day working and living the glamorous mum life.

But, other things have to get done too, and as the girls move from preschool to Junior Kindergarten, I have decisions to make. Raegan doesn’t need to register for school yet, but as I’d like Ella to be enrolled in a school program with therapeutic elements and reverse inclusion, her application is due sooner. So this week, I met with Ella’s teachers to complete the application and naturally this includes areas of strength for Ella and other areas of difficulties.

Ella’s teachers started by telling me how empathetic Ella is; how much she cares for the other kids and wants to include them; how she offers them a hand when they’re sad. They told me about how curious she is; always asking why something is the way it is. They told me how determined Ella is; how she will attempt to army crawl throughout the whole school just so she can be independent. As much as the idea is difficult and upsetting, one of the reasons I’d like Ella to be in a wheelchair is for her own independence; for her to be able to move around on her own.

Ella’s teacher described her body as not being as strong as her mind; something that is true, though difficult to hear nonetheless, how no matter how determined that girl is, her body has limitations that she tries to push through, often completely exhausting herself. Her list of goals for next year is really focused on building that strength for her to gain more independence, something most 4 year olds are really craving.

But it was when her teacher described Ella as a fighter – no matter what, fighting to use her right hand, fighting to sit up straight, fighting to walk a little further in her walker, or fighting to keep going despite it all – that I really flashed back to that tiny baby born too soon. I told them, then, that Ella has been a fighter since birth; literally fighting to survive, the tiniest baby I had ever seen demonstrating a strength and desire to live that I had never seen before, or since.

Because the simplest truth about Ella is that she is a fighter, but she’s also incredibly smart and bright, she’s happy and loving and longing to experience life. Ella is the brightest light on any dark day and I’m lucky to call her my daughter.

A little Christmas jiggle

It’s funny how much our bodies really take a physical toll from our emotional scars. I’ve noticed lately how much my back hurts, my shoulders, my arms on a Monday morning after carrying Ella around all weekend. How much harder it is to get out of bed just from exhaustion no matter how much sleep I get.

Someone recently said to me how they eat to fill an emotional hole; something I know all too well. After all, I’m the woman who sought solace from the NICU in a bag of Oreos. When the weekends are long and stressful and exhausting I’m like GIVE ME ALL THE SNACKS and frantically try to dig through the cupboards for some semblance of junk food. Of course, I’ve been healthier so yummy soul filling snacks are few and far between now. I’ve been exercising and increasing my weights and walking my butt off; my Fitbit and I are such buds.

But, this morning I got dressed and just saw jiggle. Rolls. Fat. Mounds even. I’m 100% sure that we all have these days, even the most confident must at some point feel as if they’re less on point, justified or not. I recognize these negative thought patterns now and how quickly I can spin out of control, throw in the towel, and shed tears instead of pounds.

I have learned how hard it is to recognize my own value. No matter how hard we resist, we have been told by social and cultural norms that our appearance is our value and that our partners will love us even more if we look damn fine. I’ve given that idea the middle finger; recognizing that it is no one else’s role to make me feel confident than myself. It is up to me to look in the mirror and see strength, determination, and perseverance. And yes, to see how hard it is to not eat my feelings, to not gorge myself on salty delicious snacks (did someone say snacks?), but not to only see the lumps and bumps, the stretch marks, the jiggle. To see the muscles and tone, to see that big god damn smile. To recognize that confidence is beautiful and that I can be confident and curvy.

Today, as my mind whirled, as thoughts of you’re not good enough danced in my head, as images of delicious and unhealthy food floated through my brain, I shoved them aside, put my workout clothes on, and while snowflakes fell from the sky, did Pilates barefoot, stretching my body, feeling it shake, and seeing just how strong this mama is – Christmas jiggle and all.

Fa la la la la

I’ve written about the holidays on several occasions; my first four years ago when I was living in the hospital at this time keeping a watchful eye on those sassy babies living it up in my tummy. Last year, my focus on the holidays was hopeful; with a long year behind me but hopeful for a better year ahead.

This year, as Braeden and I decorated our tiny yet full Christmas tree, I became reflective again, as I always seem to this time of year. As he carefully chose the location for his favourite ornaments; the minions, fire trucks, and Santas, I watched him as his excitement grew that Santa would now see that we’re ready for Christmas. His calm happiness reminding me of the juxtaposition I face with him; so loving and cuddly one minute to explosive anger and frustration the next; how hard I have been working to keep him from being labelled as a challenging kid in class or a behaviour kid. How hopeful I am that this year will bring him peace and allow him to love school again and want to learn and lead.

As he placed Ella’s fairy princess on the table for me to hang, I thought about the year we’ve had, how strong my girl is, how much she has to say and how determined she is to do things on her own, and I look ahead, somewhat sadly, knowing that it is less and less likely that my sweet girl will ever walk on her own, instead finding herself in a wheelchair, something I suspect sooner than later. As people tell me how far her personality will take her, I am hopeful that she too will lead and will break down barriers within so many who place so much value in physical attributes, often missing the very core of what makes people incredible.

Raegan’s ballerina reminded me of her incredible determination and lately I have noticed how much she has changed; gone is my little baby and here is a big girl with wild hair and deep set dimples. Here is a girl who is so happy and wants to be and do everything her brother does. She is sassy and sweet and cuddly and determined and seeing her grow, I am so proud of my former two pound tiny sack of sugar, and I know she has some incredible aces up her sleeve in store for me.

And, this year, I have a new favourite ornament; a small ball filled with purple glitter and the word sparkle on it. It’s really such a core of myself; to sparkle. To bring out an inner fabulousness that fills my life with something beautiful. Many days this year it has been hard to find it, only a glimmer appearing on my darkest of days, trapped within a cloud in my soul, and yet others, the sparkle has been so bright it has opened up my life in ways I did not see possible. I am so hopeful to have that sparkle more; to really feel it and have others feel it. Remember how nobody puts Baby in the corner? Well, it’s about time that this mama take control of her sparkle and not let anyone dim it. After all, ’tis the season to spread love and where better to start than within oneself?

Once a preemie, always a preemie?

Today is World Prematurity Day, our third since the girls were born ten weeks too soon.

I’ve been reflecting a lot on prematurity and its place in our story. I recently spoke on a Parent Panel to share our stories of prematurity and journeys home from the NICU. I caught the tail-end of a former preemie’s talk; that preemies are resilient. And, of course I couldn’t agree more.

Though, as I found myself telling our story, talking to our 80 Days, it was hard to speak some of those words, not because of the pain or the memories, more because of how it doesn’t feel like our truth as much anymore. You would never know looking at my girls now, 36 pounds and three feet tall that they were once so tiny, so terrifyingly small. You wouldn’t see the appointments, the surgeries, the early mornings and late nights. But, you would see the equipment, the AFOs, the difference in these identical girls.

Of course, Ella’s cerebral palsy is directly related to her prematurity, and a more resilient girl I doubt I’ll ever meet. But, our story has evolved.

I often wonder who wears the scars from prematurity the most; those tiny babies bear the physical scars, though they get smaller as the girls grow, but I’d say the parents truly carry those scars. Sometimes almost invisible, hidden behind the busy days, the normal life of families, sometimes a burning red, an overwhelming feeling.

Last night, I met with Ella’s teachers. One of her teachers said how hard it must be to see children with CP who are doing more than Ella can, who are able to successfully walk on their own. At that moment, my scar was burning and I felt as if she knew my parenting shame, the thoughts that make me feel like a terrible human; that yes, it kills me that Ella can’t walk, that she can’t have the surgeries, that my strong, sweet, amazing Ella may never know what it’s like to walk on her own. That she will find herself in a wheelchair soon. How unfair it seems that others can, but my Ella can’t.

My girls, those premature babies, born too soon, surviving so much. Yes, preemies are resilient, but god damn preemie parents are resilient too, after all, where else would they get it from?

It’s all about the sparkle

I have a smattering of freckles and moles, mostly on my arms, that Ella has taken to calling sparkles. At first, I corrected her, as she was trying to say freckle but sparkle was easier. Then, I realized that her calling them sparkle was not only that much more fabulous but just so Ella.

Some people have taken to calling me Glitter Girl as I love glitter and anything sparkly. Love it. LOOOOVE it. Someone once asked me what the deal is with my love of glitter, and when I was thinking about it, I think my love of the sparkle comes from my work. Having always worked in social work, I’ve heard about and experienced many a dark day, sometimes those days making it hard to see anything of lightness in the world, and yet, glitter is a constant reminder to myself that no matter how dark the night, there is always beauty to be found in the world, in people, in life, though sometimes it takes some digging before the true shine comes through.

So, when Ella started calling my freckles sparkles, I was all, “ya damn right, I. am. fabulous. Check out my sparkles!” Then, Ella pointed out her own sparkle on her foot, right by her toe; “Look, Mama! I have a sparkle too!” her face was all lit up and she excitedly giggled. And I thought, if any one could personify sparkle, it’s this girl. This strong as a warrior kid who has been to every hospital in the city twice, whose life is full of equipment and appointments, whose body bears the tiny scars of a terrifying day, and who works harder than any three year old I’d ever met is glitter in a bottle, sparkly from her curly hair to her AFOs.

At my desk, pinned to my board, is the quote, “She who leaves a trail of glitter is never forgotten,” and all I see in this girl’s wake is sparkling glitter, the next generation Glitter Girl.