How Charlie Changed Me

One year ago today, my son Charlie died. I thought this day would pass like any other day. I’d get up, get to work, and go about my business.

Not so much.

As I wrote in a post last year trying to make sense of my thoughts, the barrier between life and work breaks down when you lose a loved one.

So, I decided to write another post. I’m writing it for myself but posting it for (hopefully) the benefit of others. It might be too personal for some here on LinkedIn, so feel free to stop reading.

TL;DR - death sucks. It also changes how you view life.

“You never know what’s going on in someone else’s life. Always lead with patience and compassion.”

That was one of the lessons I learned very well last year.

What you see on the surface may be very deceiving.

It was the same way with my son, Charles Felix Ferguson. I remember very well the day he was born - January 26th, 2022. He looked perfect! An absolutely beautiful baby boy without blemishes in my eyes.

Outwardly, this was true. Inside, not so much.

He had an AVM in his brain called the “Vein of Galen Malformation." I had never heard of this condition before Charlie. 4 brain surgeries later, my wife and I got to know it quite intimately.

One of the most difficult parts of our journey was the rollercoaster ride of hope and despair. Joy and sadness. Until the end of February, we truly thought he would come home.

Partly because I assumed he’d make it, I continued to work minimally throughout all of it. Someone’s got to pay the bills, right? I remember getting on still several video calls early on… in many ways, pretending like nothing was going on.

What’s on the surface may be deceiving.

I remember one day, in the middle of a video meeting with customers, I got a phone call that wasn’t good news—then had to get back on the call with them. I wanted to break down and cry but held it together. Barely.

I think this world is often filled with too much pretending.

Showing only your best side. Filters. Showing only what’s perfect and amazing. Not the reality. Not truly connecting.

I remember on this day a year ago, going down to the Duke Hospital cafeteria to grab some food and meeting this other dad along the way. He shared that they should be able to leave soon with their newborn. I rejoiced with him on that good news - then he asked me about my boy.

I could have put on a face. Pretended. But I didn’t. I shared that we had decided to take him off the ventilator today. Because of his condition, we didn’t know if it would be hours, days, or weeks, but it meant that he would likely die. I’ve never connected with a stranger on such a deep level so quickly… before we parted ways, we embraced like brothers.

It was both uncomfortable and wonderful at the same time.

We are blessed with two other children. That day we had them come up to the hospital and meet their baby brother for the first time (and last). It was also wonderful and uncomfortable. The joy of our family being all together, but deep sadness knowing it was so temporary.

Charlie helped me realize another important lesson: what really matters in life. You learn what's important when it’s taken away.

Right before Charlie was born, I was working hard on launching a whole new video podcast series for UpTech Report - I had over 50 interviews lined up with tech leaders. It seemed like a huge deal to me. At the time. Due to Charlie's complications and early delivery, we canceled all the interviews. As I realized very quickly, the whole thing meant absolutely nothing to me.

I wish I had spent even more time with Charlie. Held him more. One of my favorite memories was that last evening with him where I rocked with him as he lay on my chest. No more tubes, very few wires. We had the Princess Bride movie playing on my laptop in the background in this small private room they gave us. I could almost imagine we were at home and life was normal. So simple, yet worth all the money in the world.

But it didn’t last. Barely an hour later was one of my worst memories that still haunts me. My wife is snuggling with Charlie, but she suddenly calls out to me. Seeing the look in her eyes as she asks me to check the heart monitor. Seeing his heart rate dropping to 35bpm and knowing instantly this is the moment. My stomach felt like it had dropped. My breathing quickened. I quickly called out to the nurse and then I remember just embracing both my wife and son. I watched as his tiny little breaths become more ragged and labored as his heart failed. Watching him die, seeing his life fade away before my eyes was… it’s difficult to put into words.

I’ll say it this way: a piece of me died that day.

That night I went to a very dark place—grief and depression at its worst. Thankfully, my wife and I had each other. We brought ourselves back from the brink. For many weeks after, we rarely left each other's side.

And life around us continued.

The world moves on. But when you lose someone, you don’t really move on.

Someone shared a good analogy for it. It’s more like you lose a limb and learn how to live without it. But you still don’t have that limb. A piece of you that was there that should have been there for your entire life, is not.

We have had this fear of letting him be forgotten… or forgetting him… and so my wife and I sometimes find ourselves in a mode of stasis. Reliving certain moments over and over in our mind. We hold on to each memory with a death grip, even if it’s like a rose with hundreds of tiny razor-sharp thorns causing pain, but the idea of letting the beautiful rose go hurts more.?

The great thing about writing is that it helps get it out of our heads without actually letting go. Each moment we had with Charlie is not lost. Each one is forever immortalized. Forever remembered. Now we no longer need to hold it all in our mind with the same ferocity. Rather, comforted in the knowledge, that we can always look back and pick up this beautiful memory whenever we want or need it.

I’ve done a little bit of writing down memories myself, but my wife has taken it to another level.

She decided to write down and publicly share the entire journey from discovering Charlie’s abnormality through the 4 brain surgeries and all the ups and downs of his short 33 days here on earth. Through her writing and our discussions it’s definitely helped get it out of our heads.

For those interested, you can find my wife’s writings here https://instagram.com/howcharliechangedme

For me, I’m writing this more to bring clarity to my thoughts. Too often I simply “soldier on” focusing on what’s ahead, not realizing I’m still carrying this weight. Put on a smile and assume the feeling will follow.

This brings me back to my first point…

“You never know what’s going on in someone else’s life.”

Through losing Charlie, I‘ve realized how many others have experienced something similar. It’s made a profound impact on me - bringing home the reality that behind the smile of many people I meet, there is pain. There is grief. There is anxiety. Overwhelm. Depression. Sadness.

It makes me want to know the people behind the smile. To connect deeper. No more fluff. No more “fake” happiness. No more pretending. It can be uncomfortable, but yet wonderful when we can know and love each other at this level as human beings.

“… The Lord gave, and the Lord has taken away; Blessed be the name of the Lord.” - Job 1:21 NKJV

I’m thankful to God for the short time I had with Charlie.

I’m thankful I still have two amazing kids on earth that I get to love on. It’s impacted how I interact with them actually: I’ve had several days this past year I find myself yelling at my kids, annoyed with them for whatever reason. Then I remember how I would have loved even the chance to have Charlie be around to do something that would frustrate me. It helps me put everything back into context and usually look passed it.

This is connected to the other lesson I learned, one that I find silly I still need to repeat to myself: You never know what will happen tomorrow. Cherish today.

Experiencing the death of a loved one brings us back to the reality that life here on earth is short.?

You can easily pour yourself into work with the plan to spend more time on the things that matter later.

Don’t do that.

I fully believe the purpose of life is to love and to be loved in return. Any effort and time spent focused on that lives on, echoing into eternity.

I almost took today as just another day. Get up, do work, get on with life.

I’m glad I didn’t.

If I need to write a yearly post to remind myself of these truths, I will.

I also pray that anyone who reads this doesn’t need a loved one to die to

• know you don’t need to put on a "happy face"
• have empathy for those around you
• recognize what truly matters
• and cherish today

This is #HowCharlieChangedMe . I hope it helps you.?