Thank you for saving my baby

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Yesterday was World Blood Donor Day, and I have a message for someone who is very special to me, yet someone I have never met. Someone who has no idea I exist.

But to you, special person, you magnificent soul, you amazing person, thank you.

Thank you for saving my baby’s life.

Thank you for taking the time to donate your blood, your being, part of your body. Thank you for not being too squeamish, too scared, too busy, or too important.

Thank you for giving me back my daughter.

You didn’t know when you donated blood what would happen. You might not have even thought about where it might go.

But the blood you donated went to a teeny baby, MY teeny baby. My two pound little nugget who was struggling to survive,  who needed your help to live. And you gave her the help she needed and kept my family whole.

You’re probably not aware of how special you are to me, to my family. I don’t know what you do or where you live. I don’t know if you have a family of your own. But I know one thing; you’re amazing. You kept my daughter here, where I can hold her, watch her grow, listen to her laugh. You did that. Without you and others like you, so many more of us would know insufferable loss.

Thank you, kind soul for saving my daughter, and in turn, saving me.

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Ella, day two in the NICU before receiving her donation

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Ella, 17 months later

Introducing TheCaffeinatedMama! – Ennui Magazine & Network

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I’m on a mission to change the world one blog at a time! I’m always looking for new places to write for and for new things to write about. In short, I love writing and any chance I get, I’m going to jump on it.

So, I’m super excited to announce that I will now be blogging for Ennui Magazine! I just posted a quick introduction to myself, but feel free to subscribe to the new (and free!) zine to keep up with any new pieces of mine!

http://ennuizine.com/2015/06/11/introducing-thecaffeinatedmama/

We’re 17 months!

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17 months! Ella and Raegan June 7, 2015 (day 515)

17 months! I can’t believe that we’re getting closer and closer to two years old and the girls’ ages no longer being corrected.

Time has flown by since the last month update. Seems like I blinked and here we are.

Surprisingly, Raegan is not walking yet, but she has taken steps on her own. She is so much like her brother who didn’t walk until 14 months. She’s scared to let go of things which was his problem too. She loves to walk with you holding her hands so maybe before next month?!

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Miss Raegan

Raegan has become so super cuddly, she just flops into you and starts sucking her thumb, with her finger curved over her nose. It’s super adorable and kills me every time. She also twirls her hair so has a curl at the very top.

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The Queen of silly faces!

Miss Raegan loves to scrunch her nose up and make funny faces. She’s also super chatty and has so many teeth! She wants to do what her big brother does and Lord help me, it won’t be long until she is.

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Ella in her preemie power tee!

Ella has been doing really well lately in many ways. Her right hand is opened up more and she’s using it more to grab toys and food. She also claps with her hands open. Our nanny is great about doing exercises with her which she said go well.

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That face though.

I’ve noticed that Ella seems to get super upset when I do her exercises with her or take her to her Conductive Education class. I’ve also noticed that she gets upset when she watches Raegan and Braeden playing together, and I think she understands that she can’t do some of the things that Raegan can. Of course how do you explain to a 17 month old what’s happening (and they’re actually only 14 months corrected.) It’s hard to see her struggle,  but she is so strong and I know she can do it.

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Swing lover!

Today we also attended our NICU ‘s preemie picnic where we got to see other families we met along our journey and the staff who took care of our girls and continue to do so. It’s so nice to see everyone and get to celebrate our girls. They loved their pizza and big brother Braeden loved the trains and Lego and bouncy castle and firetruck and cookies and pizza and face painting!  Man, these kids are spoiled! Plus, Mama got her face painted too at the insistence of one three year old, but he also made me a fabulous pasta necklace that matched one he made himself,  so how could I say no?

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Mama’s play date with Raegan

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Itty bitty Raegan in her brother's old stroller! (Day 511)

I didn’t have to be at work as early this morning, so I stayed home with Raegan. I was going to take Ella to her Conductive Education class, but I’m sick, so decided I better avoid the other babies. I was thinking as I pushed her along in Buds’ old umbrella stroller that I rarely get alone time with Raegan. Mostly, I spend alone time with Ella at appointments and sometimes with Buds to go to the store, but rarely Raegan.

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Ooh, water.

After breakfast, she was so cuddly with me, it was so nice to be able to give her all my attention. First, I took her for a walk and listened to her babbling to herself, so happy to be facing everything. Every time I peeked in at her, she would give me a huge grin.  Her little legs were crossing and uncrossing and pumping up and down. All I could see from the top of the stroller were her feet, such happy feet they made me laugh.

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My view on our walk

Then, a stop at the park where we of course tried out the swings and practiced our walking. We even bumped into friends at the park!

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Swinging!

Then, the two of us sat on the bench and had a snack (she didn’t share but I enjoyed my tea) while watching the other kids. She was mesmerized by the swings going back and forth and we sat there for about ten minutes, which is like four hours in Raegan time.

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Selfie!

I brought her home and we played and then I got her lunch ready and it was time to go. I had to sneak out as she started to cry when she knew I was leaving.

Normally Raegan is very nonchalant but she has been so loving and cuddly lately, and I adore it. She snuggles right into me and often sucks her thumb while twirling her hair.  I mean, swoon.

I also have to say that going out with one baby is so insanely easy that I was convinced I was missing something. Here’s hoping I get more solo dates with all three minions soon!

Battle of the Bulge: Month Four Update

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May 31, 2015 3.4 pounds to go!

So technically, this is more like month four and a half since I missed the update on the 15th with everything going on.

I must say, my Weight Watchers journey has been an interesting one this time. My weight has fluctuated up and down at random intervals. I technically only have 3.4 pounds to my pre baby weight but I must be carrying more in my belly than before the girls because although my clothes fit, they’re just slightly tighter and don’t look as great.

I thought for sure once I got back to work I would find it easier to stick to the points given I’m packing my lunch, but the late nights also mean being hungry and noshing late. Must contain myself!

My hernia makes it hard to work out, sometimes it feels fine, and other times it really hurts or is just an annoying, dull pain. Walks are scarce now that I’m not at home during the week.

It’s definitely a process that I need to figure out and I’m hopeful I can either get back into swimming or do something else once the hernia surgery is done.

On to the next month of making better choices and hopefully figuring things out!

Conversations with my three year old about Cerebral Palsy

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Right now I’m holding my breath waiting for the first time Ella asks me why she’s different and what that means. I’ve become teary eyed reading others’ accounts of these talks, but we still have some time before that happens.

Buds, on the other hand is three and knows what’s up. He’s smart and empathetic. We’ve talked a few times about Ella and her Cerebral Palsy.

The first time, I explained to Buds that when she was born she had a booboo on her brain and that she may have trouble walking, or might not even walk at all. His response; “but I can hold her hand and help her walk.” Swoon.

Tonight, at dinner, Jason handed me Ella to hold and Braeden said, “I don’t like Ella, I like Raegan better!” And I asked him why he said that. It’s because Raegan can play with him and Ella can’t.  To be honest, that’s heartbreaking to me. I would give anything for her to be able to play with her brother and sister and have been hunting for a chair to help her do that.

I reminded him about what we talked about before, her brain injury, and how she needs and loves her big brother. He took her hand and said, “Ella, you’re my best friend.”

It will take him time to fully understand,  just like it will take most of us time to. But, we’re starting the conversation, and one day he’ll be able to tell anyone and everyone about Ella.

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The three minions!

What does special needs mean, anyway?

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I’ve thought about the term “special needs” a lot since the girls were born. As a social worker, I’ve worked with kids and adults with all kinds of levels of functioning and with every type of concern or difficulty you could imagine.

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Ella in her GoTo seat at Sunday dinner for the first time, May 24, 2015 (day 506)

I’ve never liked labels. I don’t think social workers should identify anyone or diagnose. I hate the DSM (a diagnosis tool). In fact, I’ve always felt that when every other person or professional is labeling someone and calling them by their diagnosis or presenting concerns, the social workers should be the anti-diagnosis, reminding others the great things about our clients.

I feel the same way about special needs, and especially my Ella. I’ve written about my reluctance for her to be diagnosed before. Our NICU described it as the elephant in the room. But you know what? So what? Ella is beyond a diagnosis. And her diagnosis of cerebral palsy? Literally means nothing. Like so much, there’s a spectrum and that diagnosis answered nothing for us. When I go somewhere and you see Ella sitting on my lap, and not in a high chair, me telling you she has CP wouldn’t tell you anything except that she’s not using a high chair.

When you think about it, we all have special needs. None of us are exactly the same, we all live on a spectrum. Saying someone has special needs doesn’t describe their relationships,  their personalities, their undeniable strength that a “typical” person doesn’t even know if they have because they’ve never had to find out.

It doesn’t describe the heartache and worry that brought about the diagnosis, the loss of relationships, the number of appointments and therapists, the added stress, the feelings of isolation. It also doesn’t explain that once your baby is special needs, so is your family. One for all and all for one. It changes everything, that saying, special needs. It changes everything, and yet, changes nothing. Not really, not deep down. Just on the outside, like raindrops hitting a window while you look out from within, all cozy and warm, and loved.

To be honest, I still have no idea what special needs means, but I do know that we should think twice about the labels, and think instead about the person.

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Playing hide and seek!

Please pardon my chaotic life

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So this post may sound like a long list of excuses, but I feel it’s owed given my long absence.  

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Mama and Ella at our friend's first birthday!

After getting back from the trip, I was sick, then celebrated our belated Mother’s Day since I missed it, then started a new job and have been working long days and not getting home til late and there’s been so much I’ve wanted to write about, but I’ve been so busy and I’ve seriously missed writing.

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Raegan crawling through the tunnel in her party dress

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Bum!! 🙂

With me back at work and us still waiting for daycare spots, we have a nanny working with us. I’ve never loved the idea of a nanny, it just wasn’t for me, but one of our lovely NICU nurses recommended her and she’s been great. The girls are both doing well and have adjusted so far. Their daily trips to the park probably help with that! 

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Ella and Raegan wearing their new sailor dresses from Paris

I’ve been leaving early and getting home late and haven’t seen much of the girls. When I got them from their nap Friday, they were so excited to see me, Ella kept touching my face, maybe to make sure it was really me?

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Buds

My parents have been taking Ella to all her appointments lately since I’ve been at work, and they’ve all said she’s improving and getting stronger.  I’ve noticed it too; she’s reaching more and grabbing for everything. She is still arching back a lot when playing and cannot sit on her own. We keep trying all these various seats and play areas for her, but nothing’s worked yet.

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Ella and Grandma at her Conductive Education class

It’s also validating to hear other people say she’s getting stronger, because I thought so, but I’m hardly a professional.

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Raegan

At my group Thursday night one of the kids referred to something as being retarded, and I had a massive internal reaction. We processed it, because that’s what social workers do!, and I found out he didn’t even know what the word meant. What was an emotional response in me turned into a huge teachable moment.

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Buds gives Raegan a hug while playing!

I hope I can get my act together and make sure that I have time to not only write here, but my other writing as well which is so important to me and is one of my great loves.

Kids are the worst

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I just got back yesterday from a week away in London and Paris. (Hence my unusual quietness on the blog front.)

Aside from the trip being awesome, it was the first time I was away from the kids, and it made me realize something;  kids are the worst.

I mean, think about it.

They ruin our sleep. Forget about sleeping in, or sometimes even sleeping at all.

They’re super demanding. They want to eat NOW and drink something NOW and have a snack NOW and buy a new toy NOW. It’s like I’m living with three mini Miranda Priestleys.

They’re full of germs. Full of them. Constantly. Buds has what I call a daycare cough because it’s almost been a constant addition to our lives since he started school. And the runny noses literally never end.

They refuse to sit still. Have you ever been at the grocery store by yourself and found yourself pushing the cart back and forth like you would a stroller? Or realized you’re rocking back and forth when you hear a baby crying? That’s because kids cannot sit still. Ever. God forbid you’re waiting for the light to turn green or are in a line anywhere without movement.

They’re kind of gross. Seriously, think about it. Some of the things we have to do as parents are actually disgusting.

They need so much crap. I brought two carry ons for a week long trip. To take the girls to the park, I need to pack the stroller with everything I may possibly need in any given scenario; rain, wind, sun, warmth, cold, hunger, thirst, poo, dirt, bumping into someone I know. Seriously, why is there so much stuff?!

They cost a lot of money. The continuous growing plus demands for food, water, and clean bums, and all the stuff they need cost tons of money. Then there’s the long term costs like education which really start to add up. Without kids, I may just have possibly been a millionaire.

They’re loud. Why are they always screaming or crying or banging toys together? Like, dude, Mama needs about five hundred seconds of absolute silence. Can you manage that?!

They embarrass us. Why are the kids so well behaved at home and then the second they leave the house it’s like the exorcist? And why do people stare at them encouraging the behaviour? Can I just go out to run an errand without having to quell a meltdown because it’s rainy/sunny/cold/Tuesday?

They take forever to do anything. Need to run to the store for one thing? Count on it being at least a two hour trip.

Seriously, kids are the freaking worst.

But they have chubby fingers and curly hair and they love cuddles and singing songs and giggling and blowing raspberries and playing with the dog and the park and going for walks and they always make me laugh and I missed my three hooligans soooooooo much.

Man, kids are the best.

We’re 16 months old!

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16 months! Ella and Raegan May 6, 2015

Ok, so technically the girls are 16 months minus one day, but I am currently sitting in the airport waiting to board a flight to London, so wanted to make sure I got their update done before I left.

Misses Ella and Raegan are both 19 pounds, 30 inches. It’s actually hard to believe they’re the same exact size because Raegan looks like such a small fry.

Raegan has 7 front teeth plus 4 molars and Ella has 6 front teeth plus 4 molars. We’re obviously some good teeth growers.

Raegan is super close to walking. She can walk holding onto your hands and cruises everywhere. She’s her usual feisty self, and has now taken to picking up her plate while staring at you and turning it over so all her food falls off. It’s quite lovely. Raegan also has the sweetest little curls in her hair, which she mostly gets from twirling her hair before falling asleep.

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Raegan eating her first corn on the cob!

Ella has started her Conductive Education class and had her second one today.  She cried, but did so much better than last week, including sitting cross-legged with support and bearing weight on her legs while standing supported. She was quite tuckered out after from all her hard work! She also got to ride in our wagon for the first time with her adapted seat from Firefly. She was not a fan at first, but once I took her hat off, she loved it.

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Ella riding in our wagon for the first time!

It’s been hard transitioning the girls out of my full time care, probably as hard on me as them, if not more. I’m away for a week so hoping Ella has a better time this week not being so attached to Mama, while being super pumped to see me when I get back, of course.

It’s so hard to believe another month has gone by, though not surprising with how busy we’ve been.

P.S. follow me on instagram for amazing vacation shots!! http://www.instagram.com/adventureswithmultiples