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?

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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.

Oh Mama, you’re doing just fine

So, for those who don’t know, I work in children’s mental health and spend a lot of my time talking about parenting and parenting skills. And all too often am I reminded of my own parenting journey when talking about families.

Since starting school last year, Braeden has had some pretty challenging behaviours that I have thrown every skill and technique in my arsenal at. It’s been exhausting and I’ve definitely questioned my ability to parent, my ability to keep any level of sanity in the house. I was hopeful that this school year would be better, but there were some phone calls from the school within the first couple of weeks and I thought I might lose it.

Instead of totally giving in and berating myself, and him, we talked about how much Mama would like the next phone call home to be something positive that Braeden did that day at school. That’s when he excitedly told me about the postcards his teacher sends when he collect lots of checkmarks. So, every morning I’ve been reminding him about the postcard and about making choices that allow him to bring one home.

Tonight, Braeden excitedly told me he had a surprise for me, when he showed me his first postcard! The look of pride on his face was so incredible and I was so proud of him and happy that he has a moment like this to encourage him to keep up the good work, and really, a moment for me to remind myself that parenting is hard work that even the experts struggle with, and that it’s the little things like this postcard that will keep us both motivated and reminded that we can handle this crazy ride.

And the fact that he was so happy to show me his postcard while all dressed up for picture day was really the icing on the cake.

All the thanks I be giving

Today is Thanksgiving in Canada, and naturally social media is flooded with posts about what everyone is thankful for. Instead of posting a drawn out Facebook status, I figure I’ll write about my thankfulness here.

First of all, I’m thankful for my three curly-haired minions. They can drive me up the wall, but my life has changed for the better since becoming their mama.

I’m thankful to those who have helped me navigate life as a single mum. It’s been a lonely, bumpy, uphill road, and I couldn’t have done it without you.

I’m thankful to have just been able to reconnect with friends and to have been back in Chicago, a city that holds a huge piece of my heart still. I grew so much during my time in Chicago and made ever lasting friends who aren’t afraid to have a few laughs at my expense, or talk to strangers with me at 1 AM.

I’m thankful to have access to incredible health care. Firstly, for keeping my girls safe in my tummy and every day after, and secondly, for the ability to have Ella attending an amazing school and therapists.

I’m thankful to have spent yesterday with extended family and to still have my grandparents in my life, especially thankful to see my kids’ relationships with them. Ella and Great Grandma chatted about earrings, as ya know, you do.

I’m thankful to be employed in the field I am extremely passionate about. Social work is in my bones, and it’s hard to imagine doing much else.

I’m thankful for friends from all walks of life who allow me to be myself. Especially thankful for friends who are truly more like family.

I’m thankful for my city, so full of beauty and grace and history. Thankful to be raising my kids where I grew up and embarking on many memories.

Lastly, I’m thankful for remembering to be thankful. Some days the sun is hard to find behind the clouds and it can be easy to get stuck there. And that’s when you need the people in your life to pull you into the warmth.

That’s not fair!

Ask any parent and I would almost guarantee that their child has a certain behaviour that is like nails on the chalkboard to them. Maybe it’s the fact that they’re a screamer, or that they incessantly yell are we there yet in the car over and over until you want to pull the car over and just say YES WE’RE HERE!

For me, the thing that sends a frisson down my entire body is when my kid yells at me, “That’s not fair!!” It’s like his catchphrase, uttered even in the fairest of situations that just may not be what he wanted. And every time he says that to me, every time I hear those words, I want to sit him down, look him in the eye and tell him what’s really not fair.

See, it’s not fair that Ella has CP. It’s not fair that I have to watch her struggle to be able to do the things that she wants to do. It’s not fair that the world isn’t made for kids like Ella, that it’s made for able bodies, no matter how much one might dream. It’s not fair that there’s therapies and surgeries out there that her doctors don’t see helping her. It’s not fair that for every two steps forward we take, it seems like we’re forced to take a couple hundred back. It’s not fair that I’m doing this all on my own. It’s not fair to be so exhausted and have no one to share life with.

It’s not fair, but it’s life. It’s not fair, but you’ll never hear Ella say that. Ella doesn’t spend much time talking about what she can’t do, instead she tells you what she can and WILL do. Ella takes on every single day with a giggle and a determination that only the strongest warriors possess. Ella’s teachers have the best stories of how hard she works, and though I wish some things could be different, I’m so proud of my tough girl. My sassy princess who sings at the top of her lungs and says hi to strangers on the subway.

It’s not fair, but patience and teaching are paramount in parenting, and so when my kid says that to me over some trivial matter, I remind him how lucky we are, and then I give them snacks, because snacks really do make the world go round.

Give me a second while I readjust my crown

I’ve written a lot about trauma, especially the trauma that accompanies a premature birth. I think a lot of the post secondary trauma I’ve experienced in the girls’ lifetime is related to their birth; more so than the NICU stay. Maybe it was the suddenness of the delivery versus the time I had to adjust to the NICU life, or maybe it was the feeling of loneliness involved with the delivery, the feeling of being stuck in a tunnel and just having to wait and see when and where you would exit.

For the last two and a half years, I’ve had a hernia. Not really a super big deal, it just kind of became like my annoying pet that would sometimes get obnoxious before simmering down again. I didn’t think too much of it until it was my time for surgery. Then, it wasn’t just routine day surgery, but more of a return to the same hospital, the same hallways, the same loneliness that accompanied the girls’ delivery, and truth be told, it was those things that made me anxious, that filled me with a coldness and a dread that was so hard to explain to others. The responses of oh but it’s routine and you’ll be fine and won’t it be nice to have it dealt with made me feel more anxious, and slightly crazy. Of course it’s routine. Of course I’ll be fine. Of course it’ll be nice to get rid of that nagging pet. But you’re speaking logic to a woman whose heart is trapped in a moment three and a half years ago and who can’t catch a breath.

The morning of the surgery I went alone to the hospital, checked in and changed into my oh so fashionable gown. I was asked at least seven times who was there with me. The nurses couldn’t understand how I could be alone, their looks of pity almost rendering me to tears. The seconds dragged and then I was being wheeled through the hospital, peeking out over my feet, just like when I was moved to the operating room to birth the girls. The porter talking to me and me tying to catch my breath to answer him, to not be rude. And then after a years of this annoying little pest, it was as if time zoomed forward and I was in an operating room again. The coldness the same as last time, chilling to the bone. Laying on the table, then the arm rest, the same as my c section. I was given oxygen except it felt like I was suffocating, the ceiling and walls closing in on me, a tear streaming down my left cheek as I tried to remember to breathe, a reflex touch to my belly, except, no that isn’t now, that was then, and instead of waiting to see two tiny dark haired girls appear above me on a screen, my eyes fixed on the surgical lights. Then, nothing.

That moment, the moment when the walls were closing in on me, the ceiling feeling inches away, was the loneliest I have ever felt. With no hand to hold or comforting voice and a room full of people unaware of how major this was-I felt utterly alone, not just physically, but in my soul. I awoke, dizzy, feeling that there should be a face I would see, but instead just the time blazing at me in red.

I’m not sure that the physical healing has been as hard as the emotional. I have wallowed this week in that sadness, and forgot about my suit of armour, my warrior queen status. How easy I find it is to forget that I walk through life every day with a god damn crown on. How we have survived as a family through the ugliest and darkest of days because I’m leading us forward. How sometimes wearing that crown is lonely and the weight is hard to manage, yet I still remain the queen; a queen with all her faults. And so, as a reminder to always put on my crown and armour, I got the simplest of tattoos in a place I will always see, a place to always remember my warrior queen status.

One-on-one parenting for the busy mama

Through a series of random and unforeseen events, I found myself with the ability to spend some one-on-one time with Braeden this past weekend. With three little kids, a full-time job, and only one me, it feels almost impossible sometimes to have individual time with each of the kids. Unfortunately, most of my one-on-one time is spent with Ella at appointments.

So, being able to spend time with my number one man was pretty exciting. It gave me time to do a bunch of special stuff with him, but also allowed us to chat without the distraction of two little sisters around.

We hit the baseball game and I explained the rules to Buds, much to the delight of those around us. He asked countless questions and made connections easily. I'm always blown away by how smart they all are.

After the game, we waited patiently to run the bases and selfie at the dugout. We were both pretty exhausted from so much fun, but not too tired to hit the pool before bed, and then again in the morning. I helped him with his kicking and he soaked me with a water gun. It actually felt like a fun, relaxing weekend for once when too often our weekends are just spent getting groceries and doing errand after errand in between breaking up fights between the kids and feeding them snacks.

The best part was just hanging with my buddy, the kid that made me a mum. Listening to him tell me his hilarious stories and him waiting as I explained things to him. He excitedly told anyone and everyone who would listen about his day, and I realized how important those solo times are, even if they can only be a rare occurrence. The weekend reminded me to try and carve out time with each of the kids soon and that fun may look slightly different now but rewarding nonetheless. Buds, so exhausted Saturday night asked if it was time for bed, and that is always alright with this mama.

Adventures in Cerebral Palsy

I’ve written a lot about letting go of some parenting dreams and expectations when you’re parenting a child with special needs or different abilities. The milestones shift. The path diverts. It really is like heading off on an adventure through the fog; sometimes, the fog engulfs you, stings you, leaves you battered, and other times, the fog clears and you see something for the first time, something you could have never seen on that cleared and sunny path.

Cerebral palsy is like this wild adventure that, really, I know nothing about. I can talk to my kids about school, making friends, and even, God forbid, dating, but CP? CP I know nothing about except what other people have told me, and they don’t know that adventure either. 

And, really, Ella is her own adventure. All of my kids are their own unique, wild ride that changes constantly, just Ella’s has way more loops and crazy turns. And just when I think the coaster is going left, we plummet suddenly, only to climb a hill next.

I have been so awed by my daughter lately; her sitting, her crawling, her hilarious storytelling. Today, though, I was gobsmacked by her. In front of doctors and therapists, Ella cruised. She cruised! My God, the girl moved and tears stung my eyes as the coaster dipped and my body felt as if it were floating for two seconds. And to  them, nothing; to me, the world. The fog left and the sun was so bright, and all I could see was her strength and her perseverance and her determination and the fact that this three year old kid can amaze me more than most adults.

Cerebral Palsy can often be a bitch- just a downright God damn bitch that consumes your heart and soul and fills your life with appointments and therapies and equipment and can’ts and won’ts and needles and surgeries and worry and loneliness and then, just like that, she opens  up a crack, and you’re not sure what’s what anymore. Because Ella cruising? Taking steps, looking so happy; that didn’t seem possible not that long ago. And that shit she did, that is HARD. Like, warrior status hard. 

And I guess that’s the adventure; raising warriors in a fog, not always able to see the beauty around us, stuck in that fog, until our warriors gently remind us to get out of it, to look beyond, to see the adventure that no one chose, that just became, and really, the unknown is always the best adventure, because anything really can happen. 

Happy Mother’s Day, Warrior Mamas

This weekend marks Mother’s Day, a day for cards and flowers, usually. For some, though, this yearly celebration doesn’t do enough to highlight all the ways mums love, all the things mums have seen, and all the ways mums keep it going. 

We can never know another’s story, struggle. For some, Mother’s Day is a day of pampered relaxation, for others, it is a reminder of what may never be, and for many, it is forgotten, replaced by caring for others.

To all you Warrior Mamas, sitting next to your baby learning to breathe in an incubator, to all who have watched their child being wheeled away for surgery or a procedure, to all who have held a hand tightly during stitches or therapy, to all the Mamas who have sat and listened to doctors and specialists, who have googled and researched, who have pumped at 3 AM, who have birthed in tubs, in cars, in surgical suites, Happy Mother’s Day.

Happy Mother’s Day to all mums who do it on their own, those who have divorced or lost, to all mums with partners who feel alone, to all the mums who have yet to hold their baby, to the mums who wipe away their tears in private, the mums who get out of bed every day, to the mums who sit in hospital cafeterias, who keep track of every appointment, every medication, to the mums who cook special meals, who beg their kids to eat. 

To all the Warrior Mamas who face the world, head held high, no matter how hard it is, no matter how different life seems from what was expected. To the mums who battle cancer, illness, anxiety, disability, fear, and loneliness every day. To the mums who raise their swords so their children don’t have to, the ones whose armour is nothing more than skin. To the mums who doubt themselves, who think they are not strong, they are not warriors, I see you, I feel your battle, and you are a Warrior Mama. 

Happy Mother’s Day to all the badass Warrior Mamas, may we raise our swords together, knowing we fight in solidarity. May we be brave, strong, thoughtful, and may we recognize our battles, honour our scars, and love hard and deeply so that our kids will also learn to recognize battles in others and will grow to be their own Warriors.

Happy Mother’s Day, Warrior Mamas.

On top of the hill 

Last week, I ran 5K in preparation for my upcoming 10K in support of the Women and Babies Program at the hospital the girls were born in. Admittedly, I was kinda slow and heading up a hill in the cemetery down the street from me. Breathless, I arrived at the top of the hill.

Slowing my pace, I looked up at my surroundings, which apparently is not something I do very much and I startled at the view. There, on top of the hill, I saw headstones covering rolling hills and behind that, the city; buildings and cranes and trees. Seemingly a world away given how quiet the cemetery was. But, when I turned, from my viewpoint I could then see the girls’ NICU and Ella’s rehab hospital. The irony of standing in a cemetery looking at these two significant locations was not lost on me. How easily the outcome could have differed, how standing in a cemetery could have meant visiting one or both of my girls.

Standing in the cemetery, desperately trying to catch my breath, I remembered how lucky we are, how trivial it all seems sometimes. Yes, there are shitty days, but those are outnumbered by the good ones. And I cannot tell our future; where we will be able to live, if Ella will walk, whether the kids will be happy, but I do know our past, and I know that our present took us on a different path, not the easiest, not the shortest, but one that lead us on top of the hill.