Navigating Grief and the Loss of a Medically Complex Child

There are so many cliches when it comes to grief. The ones I have heard the most from well-meaning people wanting to help: "It'll hit you at seemingly random times", or "It'll get easier with time, but it never really goes away". And my favorite "Everyone grieves in their own way."

Suffice it to say, there is no roadmap. And grief is unpredictable.

There's plenty of writing about grief already out there. There is writing about grieving the loss of a parent, a partner, or a child. But what isn't written about as much specifically is grieving the loss of a profoundly disabled, medically complex child- the range of emotions, and the complexity of the situation.

I've heard from other parents who have lost their medically complex children. I'm finding that there are a lot of common threads, including mixed emotions. The shame around some of those mixed emotions causes this population to navigate their grief and process their loss alone.

But I'm going to name the thing that most of us don't talk about. At least not publicly. I refuse to be ashamed. Because multiple truths can coexist. And mixed emotions don't take away from how much I loved him.

Our grieving journey started shortly after Declan was born. Before that, if you count the loss of his identical twin in utero. Or before even that if you count our infertility journey. But specific to just Declan, if I had to pinpoint the moment grief began, it would be when the doctors told us that he needed a trach and a feeding tube.

Not understanding what a trach was going to mean for us, I initially reacted more to the feeding tube.

"How would he take a girl (or boy) on a date if he can't eat?" I asked.

"How will he explore new foods and new cultures?" I fretted.

If only I'd known that a feeding tube would be the least of his problems.

We grieved when Declan was trached and had his feeding tube. We grieved when he was diagnosed with Moebius Syndrome, all while holding onto hope and focusing on the positives. We grieved the injustices that he suffered along the way. We grieved his cognitive diagnoses, the loss of hope for the life we'd dreamed of, and the impact on his twin brother.

We grieved the loss of our own freedom and goals for life as we anchored down to manage alarms and medications. We grieved our marriage when we fell apart, though we were able to put that piece back together. I remember when Ryan and I were talking about reconciling, one of the things that held me back for a bit was that when we were apart, I got a real break from the constant grind of keeping Declan alive. He'd go to his father's house, and I could breathe. I could go out and have a life.

We had been grieving Declan since he was a tiny baby. We'd been grieving the life we hoped we'd have. That we'd worked for and planned for. And we had been grieving the future we knew he'd never get - one of normalcy and self-sufficiency.

Like I said before though, many things can be true at once. While we grieved, we also lived - to the best of our ability. We loved our children. We clung to hope. We fought for Declan. And we did our very best. We didn't focus on the grief. Afterall - that wasn't going to help us, or him.

Since Declan passed away, our grief journey has changed. It's sharpened; it's dulled. It has morphed.

The biggest complicating factor that makes grief look different for us -caregivers of medically complex children who pass- is relief. And the shame that we feel for that relief.

We'd been running a marathon for 10 years. And losing him meant stopping to rest and catch our breath. My nervous system finally got to stand down. But it also meant that we were experiencing emotions that you aren't supposed to feel when your beloved child dies.

So, yep. I said it. And I've heard it from almost every caregiver that I've talked to who lost a severely disabled child.

I'm sure if the caregiver community were polled, there would be a strong negative reaction to this. Which is why most of us don't name this publicly. All of us know that when our child was alive, if someone who lost their child said they felt relief (even along with profound grief), we would have raged against it - at least at one point or another along the way.

Losing your child is the greatest fear that these caregivers face on a daily basis. Admitting that you may feel relief, or that there may be silver linings to the loss of that child while you are fighting every second of every day to keep that child alive, feels like a deep and profound betrayal of the life that you are dedicated to and have given everything up for.

But like the life we led while our children were still alive, this path is isolating. Even more so.

The relief I felt when we lost Declan lived in tandem with my deep and overwhelming sadness. Because that was also true. So, I also used it as a lifeline.

I really don't know how I'd pick myself back up if something happened to one of my other children. As Elizabeth Stone said, "Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body." But the silver linings kept me from falling into a pit of despair that I would never recover from.

So, despite the guilt, I grabbed on. And we started doing things that we couldn't do while Declan was alive. We did what we had done to survive the challenges we faced while he was alive: We focused on hope and joy and made the choice to keep going.

My grief still takes me out at the knees, sometimes when I least expect it. I thought the twin's 10th birthday would be hard for Nash. I didn't realize it'd be so hard for me. I had been doing alright, and then BAM- it hit me.

Thanksgiving though? I was totally fine. I think because Declan didn't eat. We often made him sit at the table with us for a few minutes, but he usually ended up off in his room reading or watching a movie for most of the meal.

Something I am currently finding to be very triggering: every year since the twins were babies, we've had Christmas photos taken. I have a canvas for each year of their lives, lining our hallway.

HOW are we supposed to take these photos without him though?

The whole point was to document their lives. And now he's gone. But Nash is still here. And Beck is here now too. So don't we owe it to them to show them that they matter? That we still do these things for them?

We usually would do photos of the boys, and then photos of the family. But I'm a blubbering mess just thinking about doing this without Declan. I don't know if I can take these photos. Nothing says Christmas joy like red, swollen eyes and tear stains, right?

My mom had an idea to photoshop the photos. Maybe that would work? I dont want to give him angel wings, but we could maybe add him in and make him a little see-through. I've also thought about changing the tradition somehow. Make it a summer thing instead? Do it outside?

I don't know how this portion of the story ends. I don't know that it ever will.

I know that the immediate relief has faded and left me with just the sadness. I know that it has only been 3 months and it feels like both an eternity and only a blink of an eye. I know that I loved my little boy and miss him, but I don't miss the life we had with him.

And I have to remind myself of that to keep the darkness at bay. I don't miss the constant vigilance, the beeping machines, the toileting challenges, the staffing issues, the constant advocacy with all of the institutions he relied on. I don't miss being a fill-in nurse. I don't miss the complex care management. The stress. The fears of the future.

I do miss his hugs. I miss his singing and dancing. I miss walking into the living room to find him doing princess yoga classes on YouTube. I miss hearing him squeal with delight. I miss laughing at his ridiculous princess pajamas that were too small for him. I miss him stealing my phone to scroll through Spotify to find his favorite vulgar songs and then hearing him laugh when the adults were horrified. I miss the funny stories about him and his little buddies at school.

All of these things can be true. And if you have lost a medically complex person, you're not alone in feeling that way - even if no one around you is saying it out loud.

And, if you missed it - I also wrote about human composting and end-of-life choices here.

https://video.wixstatic.com/video/135c32_300604f359894fd78fe805bf87ecaa22/1080p/mp4/file.mp4

Declan pulling up his favorite vulgar song and rocking out