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mom to #mightytimothy and #ethanstrong sharing our medical life journey one square at a time.
📍Ontario, Canada

First time trying the walker outside. The bumpy pa

First time trying the walker outside. The bumpy pavement definitely makes it very tricky, but he loved being outside and we helped him get around a little.

He loved it.
Timothy even brought him a flower to play with 🥰

I’ve had to give up a lot these last 2.5 years.

I’ve had to give up a lot these last 2.5 years.
And that’s not to get pitty, but to simply share some of the reality of what life looks like having a medically complex child.

I had ideas. Oh so many ideas.
I was ready for hospital newborn photos.
Coming home photos.
Life at home as a family of four.
Breastfeeding.
Enjoying the baby snuggles of my last child with no interruptions.
And SO much more.

I used to run a sewing business. Used to.
There just was too much on my plate with all the medical stuff to upkeep it, so I decided it needed to close. I tried re-opening, but things just never settled down enough to not make it feel like an added burden.

I used to have a photography business. I actually told Shane in the summer of 2019 that I would get back into it, I was ready. We upgraded my equipment, website, business cards. Then came 2 ICU admissions in September, continued health issues and a scary Brain Injury Admission in December.
Now I barely pick up my camera. This heavy, fancy piece of equipment mostly sits tucked away with a low shutter count.

I see moms with their magical array of photos and for a brief moment wonder if I can shift gears, but it’s not realistic. I know that those magical photos hide the chaos that surely happens daily, but it’s just not our life either way.
Our life is therapy, hospitals, meds, equipment, and making memories where a quick iPhone photo to capture that moment has to be efficient.

I’ve lost my businesses, the ease of going out with friends, sleep, the idea of what life was going to look like. And so much more.
I’ve also gained a lot, but I think it’s important to acknowledge what’s been lost. It’s part of the process, whatever that actually entails.
I feel like my identity is solely wrapped around the medical world now.

In this house we grieve our losses and celebrate our wins.

If YOU need a reminder: it’s okay and healthy to grieve the loss of what you thought life would be. The loss of the “you” you were before life changed. To feel the hurt that comes with it. Just make sure to celebrate your wins too.
It’s a balance, once that can be hard to find, but we’ll take it day by day.

Social media can be such a lie 😅 Exhibit 1: th

Social media can be such a lie 😅

Exhibit 1: the swing was a no go. He didn’t want to let go of the Yoghurt container which meant he couldn’t hold onto the swing making for some very awkward sliding around. But look, he’s smiling here for .5 seconds.

Exhibit 2: swipe to see it. Grass. He said no thank you. He’d gag whenever it got near his mouth and just wasn’t a fan. But he smiled for .5 seconds 😅

So what you see is a very enthusiastic toddler about swinging and rolling in the grass when in reality that was not the case whatsoever 🙈
We shall try again another day

This is what I get for being a procrastinator. Tim

This is what I get for being a procrastinator.
Timothy got new glasses last week, check them out! He loves them.

Aaaaaand....they’ve already been lost 🙈 these were his new glasses because he lost his previous ones....yeah how about that 😅
They’ll show up right? 🤞🏻

Either way I had to share these, because how could I not 🥰 ask him for a nice photo to show off his glasses and this is what we get 😅

I never imagined we’d spend hours each week work

I never imagined we’d spend hours each week working on therapy, playtime geared towards skill development, research and so much more.

We’ve adapted (as much as we can) to a new way of life. It’s a crazy ride.

It has taught me to see the world different.
Taught me to appreciate those seemingly small things.
It has taught me to celebrate even the smallest milestones because when you think of it, being able to smile, laugh, sit, swallow, walk, talk, move with intention, breathe and all those other things we do without even thinking about it are so significant. You don’t realize how significant until you’ve seen someone you love not be able to do those things.

It has also connected me with so many incredible people that I couldn’t imagine walking this journey without.

So yes, this journey has been and is very difficult, but it has shown us some very beautiful things as well and I will forever be grateful for the fact that my eyes have been opened to those.

Morning snuggles are the sweetest 🥰 Somehow th

Morning snuggles are the sweetest 🥰

Somehow this little dude is back on a schedule of waking up ridiculously early, which then messes with his day.
Previously we’ve learned that this pattern for him has been due to increased muscle tone/discomfort and neuro irritability so I’m hoping it’s just a little rough patch that will settle itself soon so he can get back to sleeping well at night and have better days 🙏🏻

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