Barefoot in the sand

Feeling stuck, Bella?

As the pandemic continues, I bet most of us are feeling the same way.

The summer was solemn. Quiet. Reflective. We made the best of it, of course, but it wasn't the summer anyone was hoping for. Typically the summer months are a chance for Kiera and I to finally forget about colds, the flu, and other such things that keep us anxious regarding Bella's health. The summer is our big chance to let down our guard.

We socially-distance every winter (regardless of Covid-19), and this spring and summer was basically an extension of our winter routine (but with even more restrictions).

Limited visits to see family, only outdoor hangouts, and no physical contact. No hand-holding, no hugs or kisses from Bella's grandparents, aunts, uncles, or cousins. It was a real shame, and it had a profound impact on all of us, whether we realized it or not.

Love from a distance can be unbearable and heartbreaking, and unfortunately a lot of families found themselves in similar situations.

Besides that, everything felt so strange this summer. The masks. The rules. The distancing. The way people interacted with one another. The overall uncertainty that followed you with every passing day.

Learning to accept and adapt to this new reality was the biggest obstacle everyone faced.

Some days would offer the perfect distraction. An activity. A trip. A temporary thrill. You'd forget about the craziness of the world by getting swept up in some fun. Those were great days, of course.

But in spite of those good days, the very next day could turn out to be the complete opposite. You could be swallowed into hopelessness, and you wouldn't even know why or how.

The emotional ups and downs were draining. They were a huge test of mental strength and spiritual resilience. We had no choice but to grind it out, much like the rest of the world.

Arabella loves the Toronto zoo. It's our favourite place to hang out. So when it opened up again in July we were excited to head back and experience all of the wonderful things we missed.

It was was fun, but it wasn't quite the same, you know?

Barricades, one-way paths, closed attractions, sanitizing stations - we were constantly reminded that things were far from normal. It was like that almost everywhere you went.

We needed more distractions...

So that's exactly what we did.

We went everywhere we could just to get lost in some fun.

Petting zoos, for instance.

Bella was obsessed with donkeys this summer. She just had to bring her donkey figurine to show the real donkey.

We hit the local beaches.

Bella got her first taste of yoga, and loved holding poses with mom.

Lots of car naps.

Plenty of activities at home.

Spaghetti faces 😁. Bella started to enjoy eating a little more this summer, which was a pleasant surprise to us.

Playtime at the local parks.

Lots of nature hikes.

Lots and lots and LOTS of nature hikes!

Best of all, towards the end of August we got a chance to go on a week-long cottage vacation up north. It's the same cottage we always visit every year (usually with Bella's grandparents). Due to the pandemic, however, it was only the three of us this year.

Even though we were by ourselves, we had a great time. It was just what we needed. This is where we really broke away from the world. An opportunity to unwind and re-calibrate.

So we did what we do best. We got lost in the activities.

We got lost in the sand.

The vast wilderness.

Got lost in one another.

We made a ton of great memories.

And made some new friends too.

We disconnected from the outside world and got a chance to look deep within ourselves.

It wasn't the summer anyone was hoping for, but it had it's share of wonderful moments. Most importantly, we all stuck together and made the best of a strange and sometimes difficult time.

I'll leave this post with a short video of the view from the cottage shoreline. I'll be dreaming about that view until next summer, where hopefully we can see it once again.

 

Summertime sadness

Hey, do you want to go on a bike ride?

Five minutes later we're on the trails. Kicking up dust. Bella always enjoys a change of scenery. And so do I.

This summer was all about local adventures and quick getaways. Bike rides were an everyday occurrence for us, and it was usually reserved for daddy-daughter time.

Ah, yes. Just the two of us.

We had a lot of fun going from place to place, trail to trail, pond to pond. We kept things moving. We were constantly changing our surroundings (since there wasn't much to do anyway), and it kept us both entertained.

Oh, we had a blast!

It was my time to bond with my daughter, and Mom got a chance to do some things on her own. After all, Mom is constantly with Arabella while Dad is working. 

I love my one-on-one time with this girl. 

We would be out for hours. Searching for turtles. Marvelling at the colourful sunsets. Watching the trees bend and shake in the wind. Throwing rocks into streams. Feeling alive and energized by nature. 

Just breathing it in.

Those moments meant everything to me during a summer that was quite challenging in so many ways.

This wasn't the kind of summer anyone had expected. I felt frustrated, disconnected, anxious, uncertain and emotionally worn out. 

I felt stuck and completely out of sorts.

This pandemic has taken a huge toll on my mental health.

I spent a lot of time reflecting on my outlook and attitude. Why do I focus my energy on things that are out of my control? Why do I pay so much attention to the things that I lack?

When I noticed the things I was missing it only reinforced and perpetuated negative feelings. Suddenly I found myself caught in a downward spiral, and it become more and more difficult to get out. I was drowning in negative thoughts.

So what's the cure for summertime sadness?

Gratitude. Thankfulness. Counting one's blessings as they unfold each day. Rejecting negativity. By doing that you actively change your perception of reality.

So that's what I'm working on. Being grateful.

I did a little digging on the subject. Turns out that gratitude is a natural anti-depressant. You see, when you practice gratitude you activate the "feel good" neurotransmitter dopamine - and those chemical powers reward the reinforcement of patterns. Therefore, the repetition of thankfulness brings on more of the same good emotion. 

That's how you can change your reality. That's how you change your perspective. 

Gratitude is a state of mind, an insistence on a certain perspective that affirms the good things in life while rejecting the bad ones.

Currently two members of our extended family are battling cancer. They're fighting the biggest fight of their lives. How do they cope? What gives them the strength to face each day?

And what am I complaining about, anyway? 

"Wake up!" I tell myself. "Wake up!"

Look up at the trees, the sky, the sun. Look what a blessing this day is. 

It's very difficult to attract more good in your life if you are busy meditating on what you don't have.

Count your blessings daily.

I have my eyes to see, my lungs to breathe. Every organ in my body is working, pumping blood to my heart and brain. I'm grateful for my books to read, my skills and talents, the roof over my head, my wonderful family, friends, my wife, daughter, and every human that has ever loved me and whom I ever loved. 

That's what it takes. And suddenly, things don't seem so troublesome anymore.

Chew chew chew

 

Arabella gets 95% of her daily water and nutrition through her g-tube. We're so used to it that we don't think twice about it. If we're on the go, we take water and Bella's blended food and feed her while we're out.

 

We slowly push the food through her tube and then resume our adventure. It's that easy. To be honest with you, the g-tube is a blessing in disguise.

 

I personally don't know any toddler who eats as healthy as she does. What's for dinner tonight? A plate full of sweet potatoes, baked chicken, avocado and zucchini. Throw it all in the blender, mix and serve.

 

Arabella gets such a variety of healthy and nutritious food. Seeds, nuts, oils, and healthy fats galore. But despite all this great stuff she still hovers around 21lbs. Girls her age (3.5 yrs old) average around 32lbs. 

"Not a big deal", says Arabella's doctor. 

 

She continues to gain in height (which is on track for her age) and that's a very important factor. Although skinny, it doesn't mean Bella's not healthy. We're just so accustomed to seeing children with extra weight on them that we assume it's the norm. Especially with little kids, we tend to think "chubby" = "healthy" and that's not necessarily the case.

 

It's all about frame of mind.

 

Oral eating is still a big challenge for this Minnie Mouse. But one thing is for certain: Arabella loves Grandma's home-made chicken soup. She can only take really tiny spoon-fulls.

 

Little bits at a time.

 

She also loves spaghetti. Everything has to be cut up into very tiny pieces, though, otherwise she can't handle it. "Chew chew chew", we keep reminding her, over and over.

Bella needs to be watched closely because she can easily be overwhelmed with the food in her mouth.

 

Some days are better than others. Some days she's doing great, eating well and managing the food that's in her mouth. Other days she'll gag, cough and even throw-up. 

 

Some days you can tell off the bat: it's not going to be a good eating day.

 

G-tube to the rescue. 

 

 

These g-tubes a modern miracle. They're easy to use and they never seem to bother Arabella. At $300 each, they last about 6-8 months before they need to be replaced. They are well worth the money. We replace it ourselves and it's rather easy and painless.

 

When it comes to liquids, Bella does best when you give her a little bit at a time (preferably through a straw). When she sucks by herself she usually takes too much at once, so we manage the amount in order for her not to get overwhelmed. "Easy does it" is the recipe for success when it comes to eating and drinking.

 

Everything has to be controlled, and that's the way things go.

 

That's prematurity for you. Bella's eating/drinking aversion has a lot to do with her past - so as much as we try and put the past behind us, it's always right there with us. And that's totally fine with us.

We embrace it.

And with every struggle there's always a silver lining. It's been the theme throughout Arabella's life, and it's helped shape our outlook and who we are today.

Something from the past

When Arabella was in the hospital (she was about 4 months old) I wrote a blog entry but I never posted it. At the time I didn't think it was appropriate to share. Perhaps it was too raw and I was afraid it would be disheartening to some readers. But I think it's worth posting this today.

Here it is...

---

There was a new admission into our room last Friday night. A baby was delivered and scheduled for immediate surgery. I witnessed the baby's family pour in and out of the room for the next few hours while I held Arabella in my arms. It's obviously a joyful time for the entire family, but you could sense the undertones of anxiety. 

Happiness mixed with fear. Immense hope with hints of despair. It's a journey of constant clashing emotions.

Most of the little ones here at Sick Kids are fighting tough battles, and unfortunately in some cases it's life threatening.

Do you ever look at your own life and wonder why or how you ended up where you are? 

Sometimes it feels like God has sent me here on assignment, like a reporter is often sent deep into a region of crisis. 

Welcome to ground zero.

In a way, I am a quiet observer. I take mental notes of everything that happens around us, whether I realize it or not. 

Kiera and I regularly talk to a few of the other parents in the NICU. We get to know other parents that are here for the long haul, much like ourselves. We run into other moms and dads in the family kitchen, by the pump rooms, or in the hallways. Eventually we strike up a conversation, and we get to hear about their joys, triumphs, conflicts, and struggles. 

A lot of the moms here tend to band together for support. Often times it's about affirming those feelings of frustration and helplessness. Who else to better understand than another NICU mom? The other moms have helped Kiera immensely. 

Dads are generally more on the quiet side, perhaps offering a nod of affirmation to other fellow dads. Although unspoken, it doesn't mean that they are indifferent. Dads have their own way of coping and dealing. I'd categorize most of them as "strong but silent".

Many of the little ones here at Sick Kids are on an odyssey very much similar to Arabella's. Stories that are on the up, trending in a positive direction. There are still bumps in the road, but they are manageable bumps, ones that don't threaten lives or have the potential to shatter hearts.

But each story is different and unique from the next. 

We've met 3 couples so far who have lost one of their twins. One couple in particular we've gotten to know exceptionally well. 

I learned not to judge anyone from a distance. You don't know the burdens that they carry. 

A young mother lost her baby boy over the weekend. Her husband was overseas and sadly couldn't be there. The baby's issues were very complex, and it was simply a matter of time before God had to take him home. I saw this mother come in every day to spend time with him. Precious, precious time. You would never know by looking at her that she was dealing with so much. Her family came in to support her on the day the boy passed away. I saw a lot of quiet hugs.

I wonder how many silent prayers these hallways must have heard over the years.

Another mother comes to visit her baby girl everyday knowing that her little one wont live much longer. A complex liver issue, and the baby isn't a candidate for a liver transplant. Doctors have told her to consider ending the baby's intensive care, but she tells them to do whatever they can to prolong life, and she fights along side her daughter. She says she just wants to spend as much time with her as possible. This woman somehow manages to flash a big smile each time we see her. How does she do it? What does she tell her 5 year old daughter (who we also see by her side)?

When I hear some of these parents' stories, I try to imagine how it must feel like, but I cant. 

It must be a pain that cuts deep into your core.