We’re 22 months old!

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22 months! Ella and Raegan, November 7, 2015

So, technically the girls were 22 months yesterday,  but the day kind of got away from me, so here it is.

I can’t believe we’re only 2 months away from the girls turning two. What an absolutely crazy ride it has been, and it’s only just started.

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Hallowe'en!

Raegan is as sassy as ever. She never, ever, ever stops moving (yes, please read that as if Taylor Swift were singing). She loves school and is being so curious about everything.  Her language has grown substantially lately. She copies words perfectly, even ones like Minion. She for sure has more than 50 words now and more every day.

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Raegan trick or treating as Dorothy

Raegan ADORES her big brother and copies everything he does. It’s simultaneously hilarious and terrifying as she tries to act like a 3 year old. Raegan loves to play with cars, trucks, and trains with her brother,  but also loves babies, stuffed animals, and dolls. Today, we got an Anna who is the new favourite; “Anna! Anna! Anna!”

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Chilling with Anna and Elmo

Raegan loves Elmo, and yesterday handed me the remote with a very intense look and said only “Elmo.” She makes me laugh, and lately has wanted extra cuddles and I love it.

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Mama and Raegan on Halloween

Miss Ella is doing really well, getting stronger every day. She recently received a special chair for school which provides her more support but also allows her to sit up at the table with her friends,  which she loves. Proper seating has always been one of my biggest concerns for her so that she doesn’t get left out. Her language is improving every day and she is not far behind Raegan.

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Ella as Little Red Riding Hood playing in the NICU follow up clinic

Ella also recently was fitted for her first pair of AFOs,  foot braces. She’ll get them in a couple weeks and they will help her to build strength in her feet and legs for using her stander, and hopefully,  a walker.

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Colouring!

At Ella’s appointment recently, she was diagnosed as having mixed cerebral palsy affecting three out of four limbs.  But she is really doing well with her right hand; using a spoon and colouring and passing left to right and right to left. I’m so proud of her and so thankful for her amazing nanny who does tons of exercises and activities with her to build her strength.

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Mama and Ella

Miss Ella was filmed as part of the World CP Day video, and her photo is being used on their website as well. She is literally the poster child for determination, strength, bravery, love,  and hope. I couldn’t be more proud of all 3 of my adorable and amazing children.

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Stronger every day

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Ella, my sunny girl

I recently just started the 21 Day Fix Extreme version. It’s basically a pumped up version of the regular fix with a lot of balancing on one leg and jumping with weights. The thing is that I kept telling myself I couldn’t do it; it would be too hard, too intense. I wasn’t strong enough or capable of doing it. I was scared to try because I just didn’t believe in myself.

But the thing is; I can do it. I mean, ok, some of it with modifications, but I do a lot more than I ever thought I could because I’m getting stronger every day. Physically stronger, and now I’m working on getting mentally and emotionally stronger, too. My journey reminds me of a bubbly toddler whose story has seen many hard times already.

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Sitting in a cart unassisted for the first time!

Ella is getting stronger every day, too. It’s noticeable;  her right hand is open more, she’s using her stander and standing up with help. She’s playing more and reading books, banging around instruments. She’s sleeping on her tummy, rolling both directions. I’m amazed by her every day. I popped her in a cart at Winners and she did so well; she held on with both hands, and though she would fall to the side, she was trying and I’m so proud of her for that.

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Playing at our NICU follow up appointment

We just had a follow-up appointment at our NICU which was meant to be an 18 month assessment where she plays games like puzzles and points to pictures. She had a really hard time,  not with the exercises, but with her seating, and the assessment had to be stopped. Follow-up identified that she needs equipment stat so that she doesn’t fall behind. We’re heading in this week for AFOs  (leg braces) and looking at seats to try and help her. She is so smart and I want her to succeed,  not be held back because of the inability to sit in a regular chair.

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Standing and playing with her amazing nanny!!

Ella is stronger every day, and I’m getting stronger every day, too. Her spirit amazes me, and makes me so proud to be her Mama.

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Mama and Ella

Multiplicity Fall 2015 by Multiplicity Magazine

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I am excited to share a new piece I wrote for Multiplicity Magazine about how having twins will make you a better you (page 64 of the issue).

When I first started writing this piece, I really felt like I couldn’t come up with anything, then the words started flowing.

I ended by talking about strength; how having twins will make you stronger. I can’t even begin to remember myself before my girls. We’ve been on an amazing roller coaster ride together and every day we get stronger.

To all my fellow twin (and more!) parents, you got this. Seriously. No matter how your story started, we’re part of an amazing thing that most people will never know.

I present to you, 12 ways having twins will make you a better you.

Damn right we’re going to celebrate Cerebral Palsy Day

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Yesterday was World CP Day, a day where everyone wore green and hopefully learned a bit more about what cerebral palsy is, and what it isn’t.

My Facebook feed was flooded with green from other mums I know who also have children with CP and by organizations looking to promote understanding and compassion. Every one of those posts celebrated World CP Day, and essentially, cerebral palsy.

For some, the celebration of a medical condition may seem odd, but only if you look at the world in terms of can and cannot. Really, I have yet to meet a child with CP who isn’t special in ways other than their CP. Ella is the giggliest,  happiest girl with giant cheeks and a love of food. None of those things are because of her CP. That’s just her essence, what makes her her; special, unique, and amazing. All of my kids are different and hilarious and sassy and adorable. Only one has cerebral palsy.

Days like yesterday are meant to remind us that not all kids walk before their first birthday, not all kids can handle hugs, not all kids can sit up on their own, and, really and honestly, there is no such thing as a typical kid.

Every child, whether they have cerebral palsy or are on the spectrum or wear glasses or are “typically” developed, is special. Every one unique. Every one so deserving of love. Days like yesterday only serve to remind us of this.

So, we will celebrate and my daughter will always know to be proud of herself and will know we are so proud of her, and every other child who does their best and brings love to the world.

Happy World Cerebral Palsy Day!

Ella, her brother and sister, and mum and dad participated in a World CP Day video, which can be found here:

We’re 21 months!

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21 months! Ella and Raegan, October 7, 2015

21 months…so close to two, I can’t believe it! It’s been a busy month and even a busy few days.

The girls haven’t been feeling great thanks to some daycare germs but have kept their appetites and willingness to play. Raegan was weighed today and clocks in around 22 pounds. Ella was about 21 the last time she was weighed, which is hard to believe that the Itty Bitty one could be bigger!

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Raegan and Elmo, October 7

Raegan is fully walking on her own and generally looks like a drunk toddler most of the time. She has a ton of words, with her favourites now being no! and Elmo, of course. When you ask her a question, she either responds with an excited yah! or enthusiastic no! She’s been great at school, coming home dirtier than the day before.

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Supporting the Blue Jays!

Raegan had her 18 month corrected appointment today at the NICU and they were super impressed with her language and walking.

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Ella with her funky hair!

Ella’s language has improved so much as well, with lots of new words. She is rapidly catching up to Raegan and I think her favourite words are Ella and Mama! At least those are the words she says most often. Ella is also doing really well at school, though it’s been hard to find a good chair for her. Ella gets one on one support throughout the day that ensures she still gets to play with the other kids.

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Balls are the best, Mama!

Ella is using her right hand more, but her instinct is still to use her left one first; even reaching across her body to avoid using the right. Ella has two doctors’ appointments next week including her 18 month assessment.

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Getting chilly!

The girls are so close; Raegan always asks where Ella is and they love to give each other kisses and hugs every morning and before bed. Their bond is unbreakable. I can’t wait to remind them of that in the teenage years!

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Bed crashing!

Preschool, playgrounds, and buddies

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Buds and his friend and a firetruck!

I have to say, having worked with kids of all different ages, I got to have a front row seat of friendships and relationships in school settings. I can’t tell you how many girls I’ve worked with have dealt with bullying or relationship issues among their group of friends.

But, I didn’t really realize how early it starts, or how it is being a parent to a kid who tells you his friends don’t want to play with him anymore.

Buds made friends really quickly in preschool and was always talking about the same three boys. Then, one day he told us that his friend wasn’t his best friend that day, or that his friends didn’t want to play with him. Some days, he would say his friends wanted to be friends with someone else. Trying to explain to a three year old that you can have more than one friend is both heartbreaking and endearing.

But, there was always one buddy who was always Braeden’s bestie,  and I loved watching them together and hearing stories about their daytime adventures. His friend recently left preschool for kindergarten and Buds was so sad, telling me constantly how he misses him.

So, we recently got together with his friend and Buds was so excited,  he ran up to him and they played and visited firetrucks together and walked down the street holding hands and it was so sweet and lovely and I’m so glad I get to watch as he experiences life, one friend and one day at a time.

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Strollin'

Joining the Semicolon Project – the fight against depression – The Dime Times

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When I got my tattoo of the girls’ names done, I also got a small semi colon done on my left wrist.

Though small, the semi colon is mighty, and the representation it has is astounding.

It’s almost as if I am wearing my heart on my sleeve; I am saying that I’ve struggled, I’ve been there.

In my latest post for The Dime Times, formerly Ennui Magazine, I describe how such a small symbol can mean so much.

http://www.thedimetimes.com/2015/09/21/joining-semicolon-project-fight-depression/

Happy neonatal nurses day!

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It seems like every day is national day of something or other, and usually I don’t even notice, but today is extra special; Neonatal Nurses Day. And let me ask you,  have you hugged a NICU nurse today? If you ever get the chance, you should.  These people, these wonderfully strong and bright people, see so much. So many babies who have to work so hard to live, so many families struggling, so much pain. They also see first cuddles and first feeds. They see love. Every day.

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One of our nurses helping me hold Raegan for the first time

There are literally hundreds of Neonatal Nurses who are so special to me, special because they protected my girls, watched over them when I couldn’t.  They helped me to feel like a mum in a place that can be so cold, so full of fear and the unknown.

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Kangaroo care with Raegan

There is so much you want to say about these people, who don’t know what awaits them each morning. Who don’t know what good will be there, what sadness. And yet, there are no words beyond you amaze me. A very amazing nurse noticed something was wrong with Ella, and saved her. I always think to myself that if they had been at another hospital, if the nurses weren’t as good, would the outcome have been different?

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First time holding both girls together

Those nurses helped me hold my girls; something you wouldn’t think you’d need as a supposedly seasoned Mama, but those tiny babes,  with wires, and monitors, and alarms seem so hard to manage. They watched with me as the girls’ personalities grew, and we laughed together.

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Getting bigger!

They always are excited when we visit, remembering us and the girls’ 80 days in the NICU. Those amazing people, who could be having the worst day, always say hello with a smile and warmness that cannot be described. And that’s why they’re amazing people.

https://donate.sunnybrook.ca/

Seriously, why are we still using the R word?

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Years ago, when I was working in Chicago, the term mentally retarded was still used to diagnose our students – sure, it was shortened to MR, but it was still there, hanging over everyone like a controversial cloud. I hated it, and still do. It’s not a diagnosis, it’s a social stigma.

Now, people say that’s so retarded instead of that’s dumb or weird or whatever. But why do people think that’s OK still? I recently had a group where one of the youth used the r word and just now,  my mechanic, a lovely and approachable man, just referred to something as retarded. About TIRES. TIRES.

I mean, there’s no way you would know my daughter has special needs, or really, that I even have kids when they’re not around, no way of knowing how that word is like a knife in the heart. But, so what? Why is it OK to say as long as you don’t know how personal it is?

And my youth? Didn’t even know what the word meant, what it referred to. How have we accepted this as a normal thing we say and people don’t even know its history, its hurtful nature almost beyond repair for those who have endured years of its taunts.

I cannot even begin to imagine someone calling my daughter that; a girl who is so incredibly smart and strong and lovable and kind. Will it release the inner Mama bear in me? Will I be able to have an open and honest conversation about it?

For now, I want people to know that using the r word is just so fucking dumb.

The paradoxical hospital

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I’m sitting in the same place I’ve sat many times before; the hospital cafeteria. One floor below me, Ella is laying in a giant MRI machine that is capturing pictures of her brain. Her second time, and though I know the routine and what to expect, watching your baby fight the mask meant to put her asleep with all her might then dramatically falling asleep, tears still rolling down her face, remains one of the hardest things.

This hospital, Sick Kids, is much like a paradox; it simultaneously reminds you of how different life is for your child, and yet how lucky she actually has it. Every person here loves a child who was born too soon, or is sick,  or got hurt, or struggles with their feelings. And everyone is battling something. Even the staff have their share of stories; some full of light and hope, and others, darkness and sorrow.

I know Ella will be ok; her MRI is routine and she’ll be fine. But after leaving her in someone else’s hands for 80 days and 80 nights, I don’t like having to do it again. To leave and wander aimlessly through the hospital,  clutching my Starbucks for dear life, Ella’s spotted stuffed cow in my bag.

The air around this place is different, as if the universe is trying to protect those on the outside; a warning to not take things for granted. My heart beats a little bit faster for no reason other than it’s remembering the past.

We are so lucky to have this hospital in our city, yet I hate how often we find ourselves here. It’s a strange feeling, both gratefulness and something else, something that is not anger anymore, just uncertainty.

And that is a place I find myself in often; uncertainty, and I’m learning to be OK with that, and to accept that feeling.