A Chance Meeting

We were out grocery shopping on Saturday night and as we came to the checkout I overheard the lady two people ahead of us talking with the teller. She was mentioning that she worked in a NICU. I took her for a nurse right away; could have been gender bias, or just something about how she held herself and how she spoke.

I wanted to go up to her and thank her for her work in the NICU. It takes a special type of person to work in a NICU, seeing sick babies and families in distress every day. I was hesitating though.

I have this fear that if I bring up Reilly, or the NICU, or death, or cemeteries, or funerals, or babies or … or … or … then Veronica will be sad, upset or depressed. And I don’t want to hurt Veronica any more than she has already been hurt, so I rarely bring Reilly up, even though I know that this too can be hurtful and puts a bit of a wall between us. It’s dumb and wrong and tragic and understandable and necessary and sad and … and … and …

So I was hesitating, I wanted to thank this woman for the work that she does, but I didn’t want to risk Veronica being upset.

Finally though I felt I needed to, I timed it so that she was just getting ready to go; I didn’t want a conversation. I slipped past the person in between us, and said excuse me and apologized for the interruption, then I asked her if I’d overheard correctly that she worked in a NICU. She said that yes she did with a bit of a puzzled look on her face. So I thanked her. I said, “thank you for the work that you do”. Then I turned around and went back to getting groceries from the cart out onto the checkout conveyor. It didn’t seem that Veronica had noticed.

And that was that. I had felt the need to recognize her hard work in a very limited way and I did. In my head and heart I was hoping that she was going home with a bit of lightness in her step, knowing that there are people that appreciate what she does.

Well, that was supposed to be that. As luck and random chance would have it, her car was parked very closely to ours.

So while Veronica was getting Lachlan into the van the woman approached from the front to where I was standing and thanked me for my recognition of her work, but asked why I gave it.

This wasn’t in my plan.

So I told her that we’d had a son in a NICU. She said that she had been working in NICUs for 14 years and asked which NICU we were in. I told her BC Women’s. She told me she had worked there until 2014. I told her we were there in 2014. She said that she worked there until late summer. I told her we were there in January and February. She asked our last name. I told her, and told her that our son was a CDH baby named Reilly. She apologized for not knowing the name but said she had worked as charge nurse quite a bit.

If you are watching this movie in your head right now, you are looking at the conversation from the woman’s right side, more facing towards me with the van just over my right shoulder. You are also seeing Veronica come towards the front of the van having put Lachlan in on the passenger side. You are seeing Veronica noticing that I’m talking to some random woman and start to come forward.

And now you are hearing the woman ask, with hope and happiness in her eyes, how our son is doing.

And you are hearing my voice catch, seeing my face lose composition, and, in my imagination because I didn’t see it myself, seeing Veronica stop like she has been poleaxed.

I stammered out that no, he wasn’t ok, our son had died.

The light died in her eyes. I imagine that she’s seen hundreds of parents go through the loss of a child in her career working in the NICU. I imagine she’s cried with them and held their hands as they’ve lost composure. But this was out of the blue, a random, chance conversation that went sideways with a single question.

I thanked her again for the work that she did, said how much it was appreciated. I turned again and went back to the van, hopped in and started it up. Veronica asked who she was, I told her. In that moment she was angry and confused. I was in tears and crying noisily as I backed out and started driving away.

It never leaves you, that raw feeling. It is under the thinnest of layers of scar tissue, ready to be exposed to the world.

My desire to thank someone for their work had resulted in pain for the woman, pain for my wife, and pain for myself.

But I was sincere, I really do appreciate the work that she does in the NICU. And I hope that she knows I just wanted to say thanks.

Sean

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Two Years later

Two years ago Veronica and I were told that there was nothing more that could be done for Reilly. We cried, we held each other, we asked questions. Ultimately, we made the hardest decision either of us has ever been faced with; we made the decision to end support and let our son die.

I have beat myself up over that decision since the moment it was made. There should have been more than I could have done, better questions I could have asked, just something else.

I felt like I was ready for Reilly to die if that is what just happened during one of the many procedures or if his body just gave out trying to recover.

I wasn’t ready to be the one to make the decision to take actions that would end his life. I don’t wish that decision on anyone, and I suffer knowing that right now in hospitals across the world, that decision is being made, over and over.

It is two years later and our world has changed in many ways.

Veronica had been staying at home with our son Lachlan and during the pregnancy with Reilly. Since then shes taken two school courses and worked in three companies. She has just moved into a new position recently and loves the work that she is doing.

I had been working in a software company at a very senior level. I was laid off, found new work, and went to school to learn new career tools. Since then I’ve moved companies once again and am actively using all the new things I learned day to day. I am not at the level I was in my previous career, but I’m building nicely in my new career and am working in a company with a lot of room for growth.

In the two years, our older children have moved out to follow their own adventures. Gabrielle is living with her boyfriend and they are moving to a new place downtown where she is taking on a new career path, a huge opportunity. Chance has a beautiful new daughter bringing our count of grandchildren up to 3 beautiful, healthy kids. Sierra is living with her boyfriend and going to SFU, her dream of medical school remains alive and she is moving towards it. Miranda has moved in with her mother for her final year of high school, she’ll be graduating at 16 by the end of the summer.

Our son Lachlan is turning 4 at the end of this month, right at the end. He’s a leap year baby, so I guess technically he’s turning 1. He’s sitting on the couch behind me using my phone to watch Pokemon on Netflix, so I guess I did something right eh?

And we moved, from a rental in Burnaby to a townhouse we bought in Maple Ridge. We are living now in a city we’ve never lived in before, adjusting to a slower pace of life in the shops and malls, and a longer daily commute.

So yeah, our world has changed in many ways. It’s almost non-recognizable really.

Here’s what hasn’t changed though.

We continue to love and miss Reilly and wish desperately that he was here celebrating all of the life changes with us, the good and the bad.

I continue to beat myself up over the decision made to end support and let Reilly die. I know what questions I should have asked that might have changed his care if not the ultimate result. I’ve learned more about his situation and condition and I know what I could have done that I didn’t do.

Our hearts continue to beat, our lives continue to change.

Our memories change, some crystallizing, some softening. But our memory of Reilly is forever. Seared into our hearts, our minds and our very flesh.

Happy Birthday Reilly

Today you would have been two years old.

Today we should be trying to keep your ice cream hand prints off of the furniture and making sure that you love your new toys, or at least the boxes that they came in.

Instead we are remembering the last time we saw you, the day we said goodbye.

I love and miss you my son.

Be at peace.

Dad

Mother’s Day

It isn’t a mistake that Mother’s Day comes in the month before Father’s Day. I figure that as dads, if we screw up Mother’s Day we get ugly ties a month later… and what is the number one gift given to dads ever? Ties, obviously.

On Mother’s Day a dad is responsible for making the day the best that he can. He plants flowers, or he buys brunch and makes quiche for dinner. If he makes pancakes they are in the shape of hand prints and they come with chocolate milk, a flower and probably a tray for bed. They take children out so mom’s can sleep in, or they get out of the way so that mom’s can have that special moment. On Mother’s Day dad’s become facilitators for whatever needs to happen to make it a special day.

So, let me ask a question, how do you do Mother’s Day when the big event of the day is taking your wife to visit your son’s grave? How do you be the facilitator to happiness and joy on a day where you make that trip?

For me, yesterday sucked. I felt like I was failing at the one thing that dad’s are supposed to do on Mother’s Day… make their wives happy. I simply wasn’t going to be able to do that yesterday by waking Veronica up with a fresh coffee and some horrible chocolate pancakes that Lachlan would have stirred the batter for and carried in to her. I wasn’t going to be able to take her out to a nice brunch with the older kids or arrange a family dinner on the deck with grand parents or grand kids all over the place.

Mother’s day right now is a special day in hell. See, Veronica and I are hurting. Every day is bad, some days are worse. January 28 we celebrate Reilly’s birth. February 19 we memorialize Reilly’s death.

On April 19 we ignore the fact that it is Veronica’s birthday so that we can recognize International Congenital Diaphragmatic Hernia (CDH) Awareness Day.

So where does that leave me as a dad on Mother’s Day? My wife Veronica, the love of my life, the woman that I want to spend the rest of my days with; is not done grieving. Mother’s Day is hard for her.

Yesterday we went out to the Gardens of Gethsemani cemetery. We figured it would be a quiet day to say goodbye to our dead. It wasn’t, I guess Mother’s Day is a busy day for saying goodbye to moms.

I dropped Veronica off as we pulled in so that I could go and spend a bit of time with my mom. I sat beside my mother’s grave talking to her and looking at all the other families out there, including a guy with a young boy who looked to be about 5 years old. I believed then that they were there to say happy Mother’s Day to that man’s wife and that young boy’s dead mother and it almost gutted me. I pray now that, like me, that man was saying goodbye to his mother and not his wife.

When I went back to Reilly’s grave Veronica had been there for a bit and was sitting on the grass crying. I felt like a complete shit interfering with her grief. As situations go that’s a screwed one by the way. I wanted grieve for my son but I felt that I couldn’t because my wife already was. Dumb right?

Picture the movie scene. We stand at the foot of the grave and we hold each other. One of us (usually the woman), falls across the grave and wails. The man touches her back, helps her up, and then hugs her until it all makes sense.

Now picture our reality.

My wife was sitting on my son’s grave crying. I sat behind the headstone because I can’t bring myself to stand over his coffin. There was a new patch of grass put over his body, but there is still a space of 1-2 cm around his gravestone where it hasn’t grown in.

On the side of his stone, between Veronica and I, was a slug who was just moving around.

I couldn’t move that slug or kill it in case it had eaten of my son and so kept a small piece of him alive, so I sat next to it and made sure it didn’t crawl into my shoe. That’s a lot creepier to read that it was to live by the way.

I could barely reach over and hold Veronica’s hand because of our positions, but I wouldn’t lay across his tombstone or his grave area, I just couldn’t do that.

cut scene.

When we buried Reilly he was the only person in the row.

He now has 4 dead on his right, and 2 on his left. 2 spaces over from his left is another black marble stone with the last name of Wilson.

While we were there talking to Reilly we met the family of the boy buried under that stone; Jeremy Wilson. His mom, dad, brother, and his unborn brother or sister arrived while we were there. They came and put things on his grave marker and washed it up. They even gave me a tissue and some water to wash off Reilly’s which needs a bit of care and attention.

The mother was clearly distraught. Hearing her crying and hearing Veronica crying somehow made everything better and worse all at the same time. Better because I knew it wasn’t just us who were beat up by the loss of a child, that we were “normal” for this new definition of normal. Worse because it told me that if this was normal, I had no expectation of it getting better anytime soon.

For the rest of the day I could hear that woman’s crying mixing with Veronica’s. I could see them both crouched down at black marble stones with the name Wilson engraved upon them.

Yesterday was a tough day. I failed in any effort to make a good Mother’s Day for my wife.

Sean

 

Preparing for the day

Some days you just know are going to be tough and you just know are going to suck.

There will be an event on your horizon that you look at and say, yeah, that’s going to make for a shitty day.

You try and prepare yourself if you can, but often you just can’t.

I’ve been preparing for today for a bit over a year, since I stood in a hospital hallway with our head neonatologist and agreed to allowing an autopsy for Reilly. I told the doctor that if there was something we could learn to help other babies with CDH in the hospital, or anywhere, then we should learn it. I meant that then, I mean the same thing now.

We received the preliminary autopsy report late last spring or early into the summer. We had to jump through hoops just to get that, finally getting a copy from Veronica’s doctor’s office. The preliminary report was just that though, preliminary, no real conclusions, just some raw information. It was enough to raise questions though, questions that we would need the full report to answer.

It wasn’t until September that we received the full report.

If you have never read the full autopsy report for someone you love, don’t. Let your family doctor review it and tell you what you need to know. If you need to investigate further, hire someone professional as an advocate for you and let them read it dispassionately.

I’ve read a couple now, the one for my mum and the one for Reilly. In both cases I have learned a lot, but also in both cases I have wound up with more questions than answers. With my mum’s report I looked up what I needed to know, and knowing that the information wasn’t going any further than that, I let it go.

With Reilly’s report though that wasn’t going to be good enough. I am committed to learning everything I can and being sure that that information gets back into the medical community to teach doctors and to improve the chances for survival for every baby born with CDH.

So, we first asked Veronica’s doctor to review the report, call us and walk us through what it said and answer our questions. That was frustrating, she simply didn’t know enough about CDH to answer anything usefully and we had to teach her what some of the information meant.

Then we started the process of getting a formal review done with the head neonatologist at BC Children’s and Women’s Hospital.

I’ll admit up front that I pursued this less than diligently. I sent emails and made the occasional phone call, but I didn’t go and force the situation. It never seemed like the right time, you know?

We were going on vacation in November, then there were birthdays, and then it was going to be Christmas, and then everyone is on vacation, etc…

Finally, we were at BCCW to drop off a box from CHERUBS that we had bought for the NICU to get information to parents of CDH babies. Just when I walked into the hospital the neonatologist called me back out of the blue. We were in the hospital, he was in the hospital, so we arranged to meet.

During that meeting we went over some basic information about the autopsy with both of us working from memory. Some questions were answered, some tough questions were asked, and we said that we would meet again for the formal discussion.

We had enough information also to book a meeting with one of the hospital leaders to talk about consistency in care issues that came up while Reilly was at the hospital.

And that brings us to today.

Today Veronica and I are meeting at the hospital to do a formal review of the autopsy and figure out what there is to learn from it.  We will also meet with others from the hospital and figure out our next steps.

I am dreading the day in a lot of ways. My biggest wish is that I could just do this myself and leave Veronica at home and out of it. It is going to be painful and difficult going through the autopsy report and while it is necessary, it’s not something I wish upon the woman I love most in the world. I’m OK with being a controlling chauvinist on this one.

I also dread the sure knowledge that after we learn all there is to learn from the autopsy, we have to move onto the next stage and our next steps. We’ll figure out what those are, but I anticipate it will be a difficult time.

So we have both taken the day off of work and we are dropping Lachlan off at daycare in a bit so that we can just handle the day together.

It’s going to be a tough day.

Sean

Reilly Wilson – Celebration of Life – Day 23

Day 23 Posts – February 19, 2014

Goodbye Post – February 19, 2014

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In that picture you can see Reilly looking straight up into the camera, it is probably the best picture I have of him without medical devices covering his face. That I had to wait 23 days after his birth to get it still bothers me.

I’m afraid, almost, to say that this was the hardest day of my life. My fear is that if I say that out loud then the Universe will find another day to make even worse.

The day started like any other. Reilly had had a tough night with some bumps, but he was stable in the morning and doing well.

We had a team meeting to go over ECMO and how things were going scheduled for the afternoon. We knew it was coming because there is only so long we could stay on ECMO safely, each day increased the chance of infection, stray clots, or runaway bleeds.

There were so many times we had to just sit and wait for various things. Waiting for stabilization, waiting for surgery, waiting for test results, waiting for this meeting or that meeting. Waiting for this specialist or that specialist. Waiting.

This wasn’t any different, just another step in the waiting process. I am trying to remember if there was a sense of what was to come, quieter nurses, a more restrained morning meeting, but I can’t remember anything that came to me at the time.

We had this meeting in the main conference room in the PICU, there were a lot of doctors and nurses in the room, and when we walked in we knew it was bad.

The doctors felt that they had done everything they could. Reilly’s lungs just weren’t healing. The support from the perinatologist was gone, he didn’t feel that anything more would change the outcome.

In short, it was time to say goodbye and disconnect Reilly from the machines and let him die.

I know that some very few of the people reading this post will know what those words sound like. You have my deepest sympathy.

Everyone else can only imagine and I pray you never find out for yourself. Leave it to the realm of nightmare and unreality.

There really wasn’t as much of a conversation as you would think at this point. We were shell shocked.

I remember being worried that they were just going to go out and turn off the machines right away, before we could gather family. They assured us that they were not. We could take the time to gather people together and say goodbye.

I remember wondering where the cut off was in time? Did we have to be out by 9pm or something? What about 9am tomorrow?

No one mentioned a time of course and they were all solicitous concern for how we were feeling.

Things are a bit fuzzy for me now about that next couple of hours.

We cried, we spent time with Reilly, we called in our family and some friends.

We also called our priest and asked him to come and deliver last rights, only 23 days after I’d baptized Reilly myself within a minute or so after he’d been born.

How can I describe that day? I can’t really. So I won’t.

There are some post links below, and some pictures that tell more of the story.

I want to finish this part of the post though with a couple of pictures and a memory.

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This picture was taken by the hospital staff and it is mere moments before everyone just left us alone with our son in our arms for the very first time in his incredibly short life.

I’m crying as I type this now, fuck I hate that. I hate writing that.

We both had a chance to hold Reilly over the next few minutes. To talk to him and rock him in our arms while we watched the light go out of his eyes.

You could see that he was confused by what was happening, either the movement that he wasn’t used to, or just how his body must have been feeling in those last minutes.

While in my arms he gave a small gasp, only the second noise we had ever heard him make. I brought him back to Veronica and she held him then with me hugging them both, much as you see in the picture.

Reilly never took his eyes off of Veronica then and he quietly passed over that very fine line and into death.

When we walked out of the hospital, leaving our son behind with the medical team, we walked into snow falling across the parking lot. It felt right somehow. A show of cold tears from God who had taken our son Reilly back to him.

We also found out that there had been the aurora borealis seen across Vancouver and Burnaby as our son was dying in our arms.

Barnet Marine Park, Burnaby. – with thanks to Natasha Wheatley who took this picture and posted it in her blog with others: http://www.natashawheatley.com/blog/2014/2/19/vancouver-aurora

 

That’s all I have for the day I think. I need to get dressed now and head out to the cemetery.

Thank you for following the posts over the past 23 days and remember Reilly with us.

Sean

Some post links here from last year. These are the ones that we used to communicate what was happening, and what had happened.

Goodnight my son – Post from February 20, 2014

Hold Fast – Post from February 20, 2014

Eulogy for Reilly Albert Joseph Wilson

Some pictures from that last day:

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I still take heart when I see that small bear with the little LED light. That battery has long since burned out, but the bear still holds it and has a place of honour on our Reilly shelf.

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There just aren’t enough holding hands pictures in the world and it’s really something that obviously resonated with me when I was taking pictures. That sense of connection you get when you just reach out, hold someone’s hand, and feel the warmth of their skin.

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Look at that beautiful boy, so serious in his demeanor.  God I miss him.

 

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This is the last picture we have of Reilly. After we had bathed him and dressed him, and wrapped him up in his blanket.

He looks like he was ready to go home here.

I love, and hate this picture. I love it because he looks so comfortable and so ready to go home. He has no medical devices attached to him, he’s just been bathed and dressed by Veronica and I.

Mostly though I hate it because it is the best picture I have of my son, and in it he’s dead.

 

Reilly Wilson – Celebration of Life – Day 22

Day 22 Posts – February 18, 2014

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As I was starting this post I looked at the date and saw February 18th and for just a moment though I had 4 days left of posts. It was a bit of joy until I realized that I was on day 22, not day 18. That was a fucking sucker punch.

Veronica took some digital video of Reilly on this day last year just as he was waking up. She managed to get more than a few vids, but I selected the one I liked the best to post up today. Just getting it up on YouTube to post here I’ve watched it a number of times and it’s tough for me to see, but it also fills me with love.

This was a good day.

Sean

Pictures:

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My beautiful wife Veronica sitting with Reilly and just touching him, being near. Veronica did this a lot, just sat there touching Reilly, letting him know that she was there. I was more likely to be bouncing around, looking at the machines and the numbers, monitoring his movements and his motions, looking for anything that meant it was time to call a doctor or a nurse.

I think that I took on the role of caregiver first, parent second.  That was only possible because Veronica was taking on the role of parent first. And I think that’s a mom thing right, or at least it should be.

I regret a bit that I spent so much time looking after Reilly and not as much time just looking at Reilly. But someone needed to be that consistent care advocate, there is only so much involvement that the nurses can have with someone who isn’t their child.

I believe, unequivocally, that my advocacy and constant care improved the quality and length of Reilly’s life. I caught things that the doctors and nurses missed.

That means that we had longer with him in the end. And it gave me more days to just sit and hold his hand when I could.

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Reilly holding my hand, and me holding his.

 

 

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This was such a complicated procedure, one that they wound up trying and failing at repeatedly before finally managing to get an NJ tube in place so that we could give Reilly more breast milk, bypassing his stomach.

Sean

Following our Journey having lost our son Reilly to a Congenital Diaphragmatic Hernia