Little ray of sunshine 

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I would say that I generally fall under the umbrella of optimistic. Not so much that I live with my head in the clouds, but not so pessimistic that I can’t see the forest through the trees. When I first heard that Ella could have cerebral palsy, I mourned, but I also could not accept that she would be anything but magnificent. I had this vision that she would storm through the NICU doors, and shout “See?! Look at me! I’m Ella and a total badass!”

It hasn’t exactly turned out that way, but one thing is for sure; that girl is strong, and her strength shines out of her. I’ve never met a happier kid, especially one who has fought so hard to live, like Ella has. 

Ella really and truly is a ray of sunshine. Everywhere we go, people gravitate towards her big infectious smile and full belly giggle. Friends from school see her in the neighbourhood and it’s like she’s a celebrity. “Ella!” they shout, “Ella! Over here!” and she giggles and waves, much like a princess would, I imagine.

Of course, I know this. As her mum, I see it and love it and could not be more proud of her or my other two kids, but when others see it, and feel it, it brings tears to my eyes as it is impossible to imagine life without sunshine. One of my friends recently sent me a message about a conversation she was having with her mum, who was having a rough night. And in it, she says Ella was sent to this earth to heal hurt spirits, and even writing this now, I am tearing up, as I think of my beautiful girl’s impact on the world. Her role in filling souls with love and light. Her abilities to look at you, into you, and to spread her smile through to your very core, to fill you with warmth, and to know that it comes from the purest place, that fills this mama with such hope and pride for the future, hers, ours, and the world’s, and reminds me that she may actually be the tiniest little superhero after all.

Ella, spreading joy one grilled cheese at a time


Yes, I am staring at your child

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The other day, I saw a girl out walking with her parents. Doesn’t really seem like anything out of the ordinary, and yet it was extraordinary. This little girl, probably about eight years old, was walking holding onto her mum’s hands, who was hunched over behind her, and rocking some lovely AFOs.

Most people might not even notice the foot orthotics on her as she slowly and carefully shuffled on down the street, but I did. And I noticed her parents, so loving and happy, laughing, and looking so proud.

And I stared at her. Yes, I stared. Not for the reason others might. I stared at this girl in her AFOs, walking. I stared and I cried. I had no idea who they were, what their story was, even what lead to them being out for a family walk on a beautiful day. But, I cried. I didn’t see that little girl in that moment; I saw Ella, walking and laughing and loving everything.

I stared at her because she was everything I wanted for Ella. She was strong and beautiful and sunny and bright and her parents looked like they were living on the other side- the sunny side of the street where those other people live, the people who haven’t lost or fought or mourned their child’s future, the imagined one we all have.

And I stared because I rarely see such an amazing thing. Or, I have but just didn’t notice. I didn’t notice the AFOs or the strength those families have. I didn’t notice until it was all I could notice. I didn’t stare because I hadn’t been to hell and back with my sweet girls. I didn’t know, but now I do, so I stared, and I cried and I smiled and I laughed and I dreamed. I dreamed of that being Ella and I walking on the sunny side of the street.

Tales from the exhausted mama

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Once when out with the kids, I turned to my friend and motioned towards the kids, saying, “And THIS is why I’m so exhausted.” Her response was, “How could anyone not expect you to be exhausted?” I suppose it’s true, most parents walk around like exhausted zombies, constantly complaining about whatever stage their kids are in; infancy, teething, terrible twos, threenager. Or we’ve been kept up late or had our sleep interrupted for sick babies, bum changes, nightmares, or their favourite stuffy has slipped all of half an inch from their grasp.

Ella has the right idea this morning…


I also realize that when in a family with two parents being exhausted, a family with just one parent can expect even more exhaustion. My coworker describes it as respite care; when one parent is physically or emotionally done, they can tap in the second for a breather before losing their shit, but when there’s only one mama outnumbered by three hooligans, the exhaustion seems never-ending. Sometimes, I wonder why I’m so exhausted when I didn’t do anything- except keep three tiny humans and myself alive.

Raegan’s, ahem, naptime


Today, I found the exhaustion was seeping into my bones more than usual, perhaps thanks to the unwelcome snow and hail we received? Yet, after dinner, the kids went on this hugging spree where they kept asking each other for hugs and giggling profusely at each other. Then we sat and read a story with apt awe and attention before moving onto counting penguins before the kids headed to bed. 

Braeden and Ella share a hug


Earlier, I found myself wondering about the terrible twos and what I dub the fearsome fours, and how Braeden never really experienced the terrible twos but has embraced being a threenager and now a fearsome four year old, but what luck that I have daughters who do seem to fall into the terrible twos as well. I easily fell into a thought process of how shitty that is, but then watching them reminded me why this kind of exhaustion is the best kind. These three hooligans keep me up, make me slightly crazy, and exhaust me beyond limits, but also have given my life so much meaning, purpose, and love. 

And yes, many sleepless nights. Sigh.

Braeden and Raegan hug it out

In celebration of nurses

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There was a time I never really gave nurses much thought. Not that I didn’t care, just that I kind of took them for granted, that when you got sick, nurses would just be there, much like you take oxygen for granted.

A NICU nurse helps me hold Raegan for the first time


But when my girls were born just over ten weeks early, I spent a lot of time with nurses. I saw them every day for 80 days in the good, the bad, and the very ugly. I saw their determination, expertise, and mostly their hearts. I saw them leave their families every morning or every night to care for the smallest, sickest, neediest babies. I saw them understand without saying a word when they were needed and when they needed to silently close the door.

NICU nurses helped me feed, bathe, and hold my itty bitties


In fact, it was a nurse who realized something was going terribly wrong for Ella. Without her and her very quick thinking, would Ella be here? I’m honestly not sure. It was nurse after nurse who checked in on her constantly and sent her sunshine rays of love and hope and peace. 

My first time holding both girls


It was a nurse who calmed my fears about holding Ella, who seemed so precious, so fragile, for the first time and another nurse who helped me hold them together. It was nurses who helped me feel like a mum in an environment that felt anything but homely.

Ella and Raegan wearing their NICU shirts


When we go back to the NICU, it’s nurses who are so excited to see the girls and hear about their latest adventures. Nurses who cheer Ella every step of the way.

Never again will I absent mindedly think of nurses, instead I will always remember and be thankful for what they did for my girls and for my family. How they kept us whole and always reminded me to find the rays of sunshine wherever I was.

Happy Mother’s Day from the other side

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According to marketing execs and those in advertising, what mums really want for Mother’s Day is to sleep in followed by breakfast in bed and completed with a lavishly over-the-top designer gift that will instantly make her feel like the hottest mama on the block. 

Of course, for any of that to be possible, one would need a partner or some super grown-up kids. For those of us without either of those, what’s our Mother’s Day all about? Do we even get one if the only person acknowledging it is ourselves?

As we watch our social media feeds get flooded with pictures of gifts and emotional shoutouts, our day is just like any other. Except, we’re not really like any other. Sure, every loving and caring parent works their booty off for their kids, but when all is said and done, when the kids are in bed, and you pop your feet up on the couch, what really sets us apart, is that, at that moment, we are so utterly and completely alone. We don’t have a person to run through the ups and downs with, someone to make the big decisions with, someone to plan with and laugh with, we just have silence and the overwhelming feeling that we have no idea what we’re doing.

And it’s not that we don’t, of course we do. Our kids are well taken care of, well loved, and are filled with the big dreams we have for them. Yet, there’s this constant devil on our shoulder telling us that we can’t do this alone-that this job was meant for two people. And that exhaustion that seeps into every single bone in our body throughout the day makes that devil feel even more real until we find ourselves standing in the sunshine, ready to flick him off of us until we’re thrown for the next loop.

And it seems as though we have no time for ourselves, yet we spend so much time by ourselves that the paradox is almost deafening. 

So, we didn’t get brunch today or jewelry or even flowers, unless of course we bought them for ourselves, and I damn well hope other mums did, that they do when they see beauty that catches their eye and their hearts, because this job is damn hard no matter how many parents there are, and yet we rarely celebrate ourselves. 

Happy Mother’s Day to all the mums who always feel like you’re not quite good enough, not perfect enough, and yet, you are.

Don’t try to know my story

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Before I had kids, I remember there were certain parents I would see and I would just wonder how they did it. Maybe they had a bunch of kids close in age or multiples or a kid with special needs, but I would just marvel at them, their skill, their smiles, but I never understood their struggle, not really.

I mean, I’m a great empathizer. I’m in social work for a reason; I care deeply about others and try my best to alleviate their challenges in whatever way I can, but I never presume to know what something is like, I’m always very aware of how we all see the world differently.

Then I had a couple of crazy years with the kids and my story flipped upside down. I’m not lamenting anything, my kids are pretty awesome, but it’s never really easy. 

When meeting others, or even just sharing brief moments in time with strangers, I’m met with one of two responses; I don’t know how you do it or I totally get you. 

But here’s the thing, you don’t get me. You don’t know my story. You see me and maybe assume things. Maybe you’ve correctly figured out I’m a single mum or that, yes, those are twins with an older brother close in age. But, chances are you haven’t seen the scars from the girls’ pregnancy, their journey into life, wrapped around me like invisible thorns, occasionally pressing in harder than expected. You probably can’t tell Ella has cerebral palsy and hydrocephalus until maybe you see me struggling to get her out of a swing or high chair, or maybe that she’s not walking when her siblings are. Can you tell how much I struggle with working and being away from the kids? How I sometimes envy those couples walking by hand in hand with a brood of smiling children? That there is a smile, but behind it loneliness and sadness and disappointment with how some things are?

Of course not, because you don’t know my story, just as I don’t know yours. Let’s not pretend to. Instead, let’s appreciate each other’s unique take on this thing called parenthood, and remind ourselves that no matter the struggle, we are our own harshest critics, and there are more pages to still be written if we allow it.

two of three kids literally run circles around Mama


I want to walk

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Ella in her stroller wheelchair

 
Navigating life as a special need parent can be simultaneously exhausting and overwhelming. Even just realizing how inaccessible the city is can feel downright depressing as you start to think about how much it will effect your kid as they start to grow up.

We definitely take our triumphs wherever we can; Ella started drinking from a straw! But, the hits always seem to keep coming.

Last week, we were all out and about with Raegan and Braeden running around like the hooligans that they are when Ella said, “I want to walk.” It came almost from nowhere and left me slightly dazed for a minute. What do I say to her? What do I do? She’s so observant and notices the differences between her and other kids, and I hate that. I hate that I can’t just say ok! And grab her from the stroller and watch all three run and play together. 

Instead, I mustered “I know you do, and soon you’ll be walking even more in your walker.” I know it wasn’t the answer she was hoping for and definitely wasn’t the answer I wanted to give, but what else is there? I want her to walk and run and play and dance and maybe one day she will do all those things, but I don’t know that and I can’t tell her she will in the same way that her siblings do. 

And yet, that desire to do those things will get her far in life. I always knew she’d cheekishly flash her middle finger to all her naysayers as she learned new things, she is like her mama after all.

But those questions are coming, I know they are. Questions about being different, and her telling me she wanted to walk just told me how unprepared I am for that and how little I really know about this journey we’re on together. But that’s the thing, we are in this together, no matter what, together.

Just a trip down hospital memory lane

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Last week Ella got sick. And I mean, they’re all in daycare so germs and sickness are pretty standard fare, but she seemed really sick; hot and clingy and having trouble breathing. A trip to the doctor turned into a trip to an outpatient pediatric clinic in a hospital.

But, when the clinic was closed, the woman behind the counter said she would take me to the ER and when she saw me weighted down with Ella and all my stuff, she put me in a wheelchair and started wheeling me down the halls of the hospital.

When I looked up, the sign said NICU with an arrow pointing in the direction we were headed, and I looked down at Ella, snuggled into me, struggling to breathe, and I realized the last time I was in a wheelchair was the day after the girls were born and I was being wheeled down to see them for the first time.

It caught my breath and I had to struggle to keep it together, to act like this was just like any other visit to the hospital, we were just any other mama and babe. But then, ironically, when we finally got through to pediatrics, they sat us next to the only incubator in the place. As Ella snoozed on my shoulder, I marveled at how she couldn’t even fit into it now, and yet had spent almost her first three months of life tucked into one.

It’s amazing how things seem totally fine then something comes along and just knocks the wind out of you and it’s hard to regain momentum. After being physically and emotionally exhausted that night, I spent the next day in a downward spiral trying to pretend that I wasn’t immensely effected by my wheelchair trip; how ridiculous that must seem to someone on the outside. But, to those who have been there,  any little thing triggers us; the pack of diapers on a trolley in the hallway, the sign saying NICU, the smell of hospitals. The dread, the hatred, the sick feeling, and the guilt. So much guilt. Guilt that she was sick, guilt that she had been born too soon, guilt that I’m a working mum. Just guilt and sadness and hatred and fear and nothingness and everything at the same time.

Ella’s doing fine now,  she left chatting and giggling and demanding to listen to Elsa again and again. But her mama still struggles, is still exhausted, still feels guilty. I wonder, will I randomly find myself remembering the NICU twenty years from now, when my girls are grown? Will the smallest thing be like an instant time machine back to that moment of the unknown? Or will that moment slowly dissipate until it’s only a fraction of my memory? Will I continue to stroll down hospital memory lane or will I eventually close that door and walk the memory lane of love and hope and tranquility? 

Please excuse the slightly emotional Mama over here

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I spend a lot of time thinking and talking about my kids. Don’t get me wrong, I’m not one of those mums who can only talk about her kids, but I definitely find they come up a lot in conversation, as well as constantly being in my mind as I navigate life as their parent.

Yesterday, I was absent mindedly thinking about Ella and laughing to myself about how chatty she is and how as soon as I went in to their room yesterday morning she was telling me all about how her sister dropped her toy and was sad and had her jammies on and Mama has a sweater on and let’s sing Let It Go together. And then, just for a moment I thought about how my heart breaks for her that so many people won’t see that; they’ll see her equipment or her “disability” or whatever else they feel sets her apart from them and how unfair on her that is. How unfair that she will always have to work that much harder to have people see her for who she truly is, and at that moment,  when I thought about that and life’s injustices,  my eyes welled up and I couldn’t stop the feelings from boiling up, out of my heart and out into the world.

I wondered if that would go away, or if it would just be another injustice or pain or disloyalty that would continue throughout her life; school, friends, navigating a job. And how we feel it’s our job as their parent to protect them and have people know how awesome they are, but at some point it becomes their job, and they’ll either thrive at it, or they’ll struggle, but will learn in ways they couldn’t had we taken the lead from them.

Of course, we know that’s hard for all kids, but it’s that much harder for kids who are different, and kids can be cruel  – but so can adults, and I want people to see chatty hilarious Ella. The Ella who after brushing her teeth this morning said to me, “beautiful Mama!” followed by “Mama hug!” where she leans her head on my shoulder and pats my back and it instantly fills me with sunshine and warmth and I want others to feel that too, because nothing that’s happened compares to that smile of hers, and that just makes me slightly emotional.

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Pigtailed Ella for Easter

Two years and a million adventures later

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Two years ago today, my girls came home for the very first time. Technically, eight days old, but really 80 days old, having been born a little over ten weeks early.

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First day home! March 28, 2014

At the time, I had all kinds of questions floating through my head; Can I do this? Can I handle twins? Do I have any idea what I’m doing? Will Ella be ok? What’s going to happen? Will we be happy?

To be honest, most of those questions I continue to ask myself on a daily basis two years later. While grateful to be out of the newborn twin stage, and no longer as sleep deprived, I haven’t yet figured out how to get the “I got this attitude” that some mums just have seeping from their very core.

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Mama and Raegan, March 28, 2015

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Mama and Ella, March 28, 2015

Looking at their pictures from their one year home party, and it’s shocking how babyish they were then and how far away from babies they are now, especially as Raegan tells me with a scrunched up grumpy face; “Raegan do it!” and then proceeds to actually do it. And having to put Ella’s hair up in a ponytail because it’s starting to grow into her eyes, and I’m thinking to those first few days when we didn’t even know if she would make it, and here I am doing her hair and listening to her sing Let It Go.

We’ve had a hell of a couple years, too many doctor’s visits and emergency runs to the hospital. Too many times telling the same story,  hearing the same results. Too many times pushing for people to believe in Ella.

But, we were together and we’ve shared more laughter than tears and it seems impossible to reflect on at the time, but two years ago I left the hospital thinking nervously, now what? No more reinforcements or check in person,  just me. Well me, and three majestic hooligans who bring a smile to even the grumpiest grump’s face, and I guess that’s all you really ever need to be sure of as a parent, the rest are just adventures.

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Ella and Raegan, March 27, 2016