For Jacob

Best son ever.

This is a story of firsts.  My first marathon, and my first child.

If you’ve been following along with my story from the beginning, you may recall that in Why do I Run? I explained that you’d have to wait for the real meaning behind why I continue to run.  Well, the wait is over.

If you’re expecting a lighthearted tale about my first marathon, I’m afraid that this won’t be it.  I was more than a little hesitant to write about this subject matter, but I feel that it may be helpful to a number of people who will find themselves in the same situation that my wife and I did.  Having said that, if this resonates with you, or you feel it may help somebody else, please share it with them.  That is why I am writing, as I know when we went through or tough times, we searched for the stories of others.  With all of that being said, here we go.

After tackling the Around the Bay 30 k race, I had decided that a marathon in May was definitely not something I was ready for.  I completed another half-marathon in May instead, and shortly thereafter, I signed up for the Scotiabank Toronto Waterfront Marathon to be held the following October.

Around the same time, my wife and I had decided that we wanted to start our family.  I can recall that in June of 2014, on the night before the last day of the school year, my wife told me that she was pregnant.  Obviously, this was amazing news, and we were both really excited for the upcoming addition.  There were even a few tears of joy shed.  My wife was due in February of 2015.

I had established a good base fitness level from the 30 k and half-marathon training, and after a little break post half, I set my sights on training for the full marathon.

I used the Runner’s World Smart Coach training program (the free version), which I still use for my programs today.

That summer, we had some friends from Sweden visit us and showed them around Ontario.  We had shared our happy news with our families and a few close friends, and revealed our news to our visitors too, as we knew it would be difficult to hide it from them since they would be cohabitating with us for two weeks.

My training was moving along nicely, and I was beginning to feel more comfortable at the higher distance levels.  In addition, I had learned my lesson about nutrition at the 30 k, and had started to use some energy gels.

Things were moving along nicely with my wife’s pregnancy as well.  The time for the first ultrasound came, and we were super excited to get to hear our child’s heartbeat, as well as get our first glimpses of them.  I remember my wife coughed at one point and we saw our little one do a little flip.  Truly an incredible experience.

In September, we moved into our first house.  We had been living in an apartment following our time in Sweden, as we figured (correctly) that moving back to Canada, having our wedding, and buying a house, would have been too much.

We found a nice spot that was good for us, and settled in.  The nursery was set up, and our excitement was growing.

The marathon was also fast approaching, only about five weeks away at this point.

I had managed to get my long runs up to just over the 32 km mark.  When training for marathons, I like to add 200 m to my runs to simulate the final 200 m of the 42.2 km marathon distance.  Just a little quirk that I include in my program.

I felt fairly confident that I would be able to finish the marathon, but at this time, was not 100% sure.  I set the following goals for the big day:

  • Finish.  At the very least, regardless of time, I needed to finish it.
  • Beat Oprah’s time of 4:29:15 (I figured if she could do it, I could too, and 4.5 hours seemed pretty respectable as a finish time).
  • Finish in 4:12:00, I figured if I ran pretty well by my standards, this was the time I could get.
  • Finish under 4:00:00, if things were going really well, I was kind of hoping to break 4 hours, but not expecting it by any means.

Much more importantly, things were progressing with my wife’s pregnancy.  She was showing, and our baby was making their presence felt with kicks and pokes which my wife felt regularly, and I was fortunate enough to feel occasionally.  I also started getting into the habit of talking to our baby by speaking to my wife’s belly.

A couple of months after the first ultrasound, we went in for the second. We were even more excited for this one, as we knew we could find out the gender of our child.  We both wanted to find out the gender, as we felt we could not wait for the big day.

My wife went in for the ultrasound, and I was invited in some time later. Unfortunately, we were told that due to the position of the baby, they could not determine the gender.  It turns out, our baby was being shy.  I joked that I was OK with this, because it meant they were being classy and ladylike if they were a girl.

The baby was still moving around and the heartbeat sounded great. However, my wife left the ultrasound with a bad feeling about things, thinking that something was wrong.  The ultrasound technician had asked her if she had been sick or dehydrated lately, as the amniotic fluid was low.

I don’t recall the exact timeline here, but it was either later that day, or the following day, that my wife was contacted by our doctor and told that she was to do nothing but rest.  She was being referred to a specialist due to the amniotic fluid being low.  This was obviously tremendously concerning.

We were worried, but I can recall feeling positive about the situation, just feeling that everything would be OK.  After all, the baby was being really active, as my wife felt them regularly, and we saw the movement at the ultrasound.  In addition, the heartbeat sounded awesome.  What could be wrong?

The marathon was now a couple of weeks away, but obviously, my running took a backseat.  I ran less, as I of course wanted to be home to support my wife.  I do recall one night in particular, where with my wife’s encouragement, I went out for a 40 minute or so run.  As I came back up towards home, the sun was setting, and a song came on my iPod called Safe and Sound by Capital Cities.  It has a very positive feel to it, and at that moment, with the music in my ears, and the sunset in front of me, I just felt really confident that everything was going to be OK.  I told my wife about this after I got home, just trying to reassure her, as I had been doing over the course of our experience.  In my heart, it was also what I felt.

After what seemed like an eternity, the day had arrived to meet with a neonatal specialist at the London Health Sciences Centre (LHSC) Victoria Hospital.  We were of course nervous, and anxiously wanted to find out what was going on.  At this point, we knew nothing more than that there was low amniotic fluid.

We were scheduled for another ultrasound that morning, to be followed up by a meeting with the specialist.

My wife was called in first of course, and after waiting for about 45 minutes to an hour, I too was welcomed into the room.

I was really happy to see that the our baby was moving around a tonne, and their little heart was still beating away powerfully.  Unfortunately, once again, we were still unable to find out our baby’s gender.  Still being shy!  That was OK though, as we were just happy to see the movement, and hear the heartbeat.

The ultrasound technician left to get some printouts and my wife and I had a chance to talk.  She was really positive, and said that things seemed to go really well.  Part of her fear after leaving the last ultrasound, was due to the demeanour of the technician.  Conversely, at this appointment, the tech was much more outgoing and did not seem worried.

We left this appointment feeling really encouraged about things.  Of course, we knew that there was still some sort of complication, but things just seemed better now.  It can’t be a big deal if the baby is still being active and the heartbeat is so strong, right?

We went over to meet with the specialist, feeling really optimistic.  We waited patiently in the interior waiting room, and a doctor came in shortly thereafter.

The doctor introduced himself, and did not take long in getting to the diagnosis.  

There are some moments in your life, which you will always remember.  There are very few moments in my life when I can remember the exact words that somebody spoke to me, but this was one of those instances.

Sitting by my wife’s side, we were informed that “your baby has something called Bilateral Renal Agenesis, or Potter’s Syndrome.  This is what is termed, a lethal diagnosis.”

The doctor spent some time with us before leaving us on our own.  I can’t really even describe the feeling of hearing those words.  Shock, grief, sadness, disbelief?  None of them do justice to what we felt in those moments.

A short time later, the first doctor returned with the head specialist, who went over things with us in more detail.  Essentially, what this all meant was, that our baby was not developing kidneys or a bladder.  As such, they were incapable of producing enough amniotic fluid.  We were told that the cause of this condition is unknown, that we could have done nothing to prevent it, and that it is a 1 in 5000 type of occurrence.

The doctor explained that there was nothing that could be done for our baby.  Nothing.

This helplessness was especially hard to deal with.  As a parent, a huge part of your job is protecting your child.  I was powerless.

We were offered the opportunity to meet with a counselor which we did after taking a short walk and trying to wrap our heads around things. This of course, was impossible.

We met with the counselor which was part of a whirlwind of a day.  She would become very helpful in the lead up to the birth of our child, and in helping my wife after the birth.

She went over our options, as the doctor had.  I had decided in my head what I wanted to do, but in my mind, the final call would be up to my wife.  After all, she was the one who would have to go through things physically regardless of the course of action we took.

In the end, we both came to the same conclusion about what we wanted to do.  Neither of us could bear the thought of terminating the pregnancy.  We still wanted to have the opportunity to hold our child.

We would have the baby.

Our families were aware of the situation prior to us meeting with the specialist.  We ended up being at the hospital for quite some time that day. When we got home, we had the terrible task of informing our families that we were going to lose our baby.

Not that it mattered at the time, but the marathon was scheduled for the Sunday after we received this devastating news.

At this point, my wife and I tried to come to terms with things, which of course was pretty difficult.  There were many tears shed, and many moments of comforting one another.

We were of course both off of work at the time.  I recall one morning coming across a video online of The Foo Fighters performing their song Miracle on The Late Show with David Letterman.  When I clicked on the link, it began with Dave (Letterman, not Grohl) giving a heartfelt speech about the meaning of the song, and how it related to his relationship with his son, Harry.  I continued to watch the video, and the lyrics of the song really hit home with me given our situation.  This song remains close to my heart to this day.

As far as the marathon went, my wife and I decided that we would travel to Toronto, as the hotel was already booked, and we figured a night away may not be a bad thing.  I had decided that running the marathon itself would be a “game-time decision,” as I was not sure if I would be up for it mentally.

Prior to heading out for the weekend, my wife made a really poignant observation.  Again, one of those moments in time where you can remember exactly what was said.  She said to me, “everybody is talking about the baby like they’re already gone, and they’re not.”  As part of that conversation, she had the idea, that we should do things together as a family while our baby was still physically with us.

With this in mind, we went to some local parks and ponds, and took some really nice pictures.  We bought some books, and every night we read some to our baby.  Some of these were really tough to get through, but we managed.

I’m really thankful that my wife thought of this as something to do.  I hope that you never find yourself in our situation, but if you do, I recommend taking the time to build some memories, as difficult as it may be.

So, we headed off to Toronto, did the marathon packet pick up, and settled into the hotel.  We explored the view from the rooftop of the hotel, and just stayed in for a relaxing, quiet dinner, and night at the hotel.

Heading off to bed that night, we had decided that I would probably still run the marathon the following day and planned accordingly.

It’s one of the best decisions that I have ever made.

I woke up early and got myself organized for the run while my wife slept. Before taking the short walk from the hotel to the start area, I did a couple of pieces of writing.  On my left hand, I wrote my wife’s name, and the initials of our yet to be born child.  Since we did not know the gender of our baby, we had chosen names for both.  So, I had two sets of initials on my hand (J.C.M. and I.G.M.).  In addition to the names, I had written “42.2 4 u” (42.2 km is the distance of a marathon).  After writing a brief note for my wife to read when she woke up, I gave her a kiss, and said goodbye, before making the short walk to the start area.

The race got started, and physically I felt good.  I must have drank too much water before the run, as I had to stop and pee about 12 km in (this took 17 seconds; yes, I guess runners time everything).

As I was running, our situation with our child was of course on my mind. I can vividly recall running down Lakeshore Blvd. and thinking about things that we could do together as a family before the upcoming birth in order to create some more memories.  As I was contemplating these plans, a song by the Counting Crows came on my iPod, Mrs. Potter’s Lullaby, which, given our baby had been diagnosed with Potter’s Syndrome, struck a chord with me so to speak.  I remember thinking that it was kind of neat, that as I began to think of my child, this song came on.  Along with the aforementioned Foo Fighters song, and one other song that I will get to later, this song always reminds me of our firstborn child.

As far as the running itself goes, I was feeling good.  I recall having some knee pain at one point, which was unusual for me, but it passed.  As I got up into the mid 30s kilometre wise, I realized that I had a really good chance of making it under 4 hours, and I was actually able to pick up my pace towards the end of the race.

As I did this, I realized that I had managed to run some extra distance on the course, so, the cushion I thought I had to get under 4 hours was not as big as I first thought.  I pushed on, and passed a number of people towards the end.  I ended up finishing with a sprint as I knew I would be really close to that 4 hour mark.  The elites at the race started before the rest of the runners, so the timer at the finish line which was now in sight, was not an accurate representation of my time.

As I crossed the finish line, I stopped my watch and it read 4:00:01.  I figured that I may have gotten under 4 hours, as of course, pushing stop on my watch could have taken a second or two after crossing the line.  I would have to wait until the official results to know for sure.  My watch also showed that I had covered 42.82 km, more than required, which is easy to do in big runs with thousands of runners.

I collected my medal (as an aside, I was not a fan of the medal as it had a store on it, Honest Ed’s, not something I would really want to display). More important than my finishing time, or a medal, was being reunited with my family.  I met up with my wife at our prearranged meeting spot. She had come to the finish area and saw me finish.  I was pretty focused on the finish line, so unfortunately, I did not see her.

We took a few pictures, walked back to the hotel to get our car, and headed back to London.  Along the way, my wife checked the official results: 3:59:59.

Once we arrived back in London, we decided to go for a walk in Springbank Park.  I took some pictures of my wife and her beautiful baby bump with the picturesque fall leaves in the background.  We also took a picture together of the two of us, a picture that is still displayed in our home, and holds a lot of meaning for me.  The spot where we took the picture is always a special place when I go running by as I’m reminded of that time together with my wife and child.  It has also become the spot where we go to remember our child on their birthday each year.

We continued to deal with the nerves, heartbreak, expectations, and all of the other emotions associated with the situation we found ourselves in.  A short three days later, about a week after the diagnosis, we were in the hospital awaiting the arrival of our child. 

The whole process went from Wednesday, overnight into Thursday.  We had originally planned on going through this on our own, together as a couple.  But, we had then decided that we would like for our parents to be able to join us after the birth, and have the opportunity to meet their grandchild.

As part of our preparations for the birth, we had been told that the butterfly is the symbol of prenatal loss.  As such, on the room number sign for our room, a small butterfly was posted.  This lets the hospital staff know the situation, so that you are not constantly having to explain the scenario around the birth.

The nursing staff that we were fortunate enough to have, were absolutely first class, and made our stay under very difficult conditions, as pleasant as it could be.

We were still able to hear our baby’s heartbeat as my wife was monitored throughout the process.  We had planned on having the monitor’s audio going throughout the whole delivery, but my wife decided closer to the time, that she would like the sound turned off during active labour.  The expectation was that our baby would pass during labour, and this would have made continuing with the process really difficult if we could hear the heartbeat stop.

Some babies born with Potter’s do live for a very short time right after birth, but in most cases, they do not survive at all.  This is because, due to the lack of amniotic fluid, their lungs do not develop well enough for them to be able to breathe.

On the afternoon of October 23, 2014, our baby was born.  As expected, our baby was stillborn.  His gender was finally revealed, and we officially welcomed Jacob Carter McKay into our hands, our family, and of course, completely into our hearts.

This was of course extremely bittersweet.  It’s hard to describe the conflicting emotions that you go through during this time.  I was of course incredibly saddened that our baby had passed.  At the same time, I was incredibly proud of my wife, and incredibly proud of our beautiful baby boy, Jacob.

Jacob weighed exactly 1 pound, but the weight and impact that he has had on my life, is immeasurable.

My wife and myself spent some time alone with Jacob.  We were told that we could spend as much time at the hospital as we wanted to.

After some alone time as a family, I went out to the waiting room and collected our parents.  I explained to them that Jacob had some bruising on his face from the birthing process.  When babies are born premature, their skin is really sensitive, so this bruising is common.

Our parents came in and spent some time with us and Jacob.  We ended up being happy with our decision to allow our families to be a part of this day.

We took a number of pictures to help us hold onto the memories.  Pictures with us, as a family.  

In addition, we read a story by Nancy Tillman called The Night That You Were Born which we saved for this day.  We also had plaster casts made of Jacob’s feet.  And together, listened to Miracle with Jacob in my hands. Hands on a miracle.

Again, I can’t say enough about the care and compassion we received from the staff at the London Health Sciences Centre.

In reality, we probably could have stayed there forever.  How do you let your child go?  We ended up staying at the hospital with Jacob for about seven hours.

When it was time to say goodbye, we were given a couple of options.  One was that a nurse could take Jacob away.  The second option was for us to take him away to what is called the “quiet room” on our own, where he would then be cared for appropriately.  Accompanied by a nurse, we took Jacob to the quiet room and said goodbye.

I went and got the car while the nurse took my wife downstairs.  With us,  we took a memory box which had a number of items from the day, the measuring tape Jacob was measured with, some of the clothes he wore, and so on.

We made the drive home, still in a state of disbelief that this had happened to us.  Not only did it happen, but it had all transpired within a week or so.

As we arrived home and exited the car, it was after 11 pm.  I have a vivid memory of the sky that night.  It was really clear, and full of stars.  Those stars to me, were a sign of a connection between my son and I.

A day or two later, I heard Coldplay’s A Sky Full of Stars which would complete the hat trick of songs that remind me of Jacob. Every time I hear one of them, I am reminded of our beautiful baby boy.  In a sky full of stars, I think I see you.

We went to bed on the night that Jacob was born, and surprisingly, did manage to sleep.  Over the next days and weeks there was a lot of grief obviously, and trying to come to terms with the events which had just transpired.

I can remember waking up one morning, and there were tears in my eyes as if I had been crying in my sleep.  Until that point, I would have never thought this to be possible.

In the time after Jacob’s birth, we would continue to read a lot of other people’s stories.  As my wife remarked at the time, “it is amazing that any healthy babies are born, considering how much can go wrong.”

So, how do you get over the loss of a child?  The answer is, you don’t. In the weeks and months that followed, my wife and I had the support of our families and friends, and most importantly, one another.

We would spend time both together, and on our own, with Jacob’s memory box.  Going through some of the items that were a part of the day.  I liked to smell his clothes, as they smelled like him.

To this day, it is still a little hard to believe that we went through this experience.

I have a number of rituals and ways that I stay connected to my son. When I look up at the sky and see even just one star, I feel connected to Jacob. When I hear the songs I’ve mentioned, I feel connected to Jacob.  When a butterfly flutters by, I feel connected to Jacob.

But perhaps most of all, when I run, I feel connected to Jacob.

He was with me for my first marathon, and he’s been with me for all of them since.

So yes, I run because I enjoy it.  I run because it helps me stay fit, healthy, and happy.  But, I also run, because when I run, I run with Jacob.

I plan on returning to the Toronto Waterfront Marathon in 2018.

This September, I will be running the That Dam Hill Ultramarathon in London, Ontario to raise money for the Children’s Health Foundation, in honour of my son Jacob, my daughter Hadley, and all of the children and families who use the services provided by the Foundation.

The Children’s Health Foundation supports the Children’s Hospital, the Children’s Health Research Institute, and the Thames Valley Children’s Centre.

I am attempting to “run” for 24 hours in order to raise $24 000 for the Children’s Health Foundation.  This event is the Canadian 24 Hour Championship.  I am asking that each person who reads this post donates $5 (of course, larger or smaller donations are also appreciated) and shares my goal with 5 other people.  In addition to personal contributions, I am hoping for corporate donations.

The ultramarathon will take place in Springbank Park, and as it is a loop, will pass by the spot that reminds me of my son Jacob, a number of times.

If you would like to donate, you can follow this link to my personal fundraising page administered by the Children’s Health Foundation.  All funds are donated directly to them.

Thanks for taking the time to read my story, I hope you can make a donation, and will share my story (you can do so by using the buttons below).

If you are looking to make a corporate donation, or can put me in touch with somebody from your organization, it is greatly appreciated.  You may email me at neilgordonmckay@gmail.com to make those arrangements.

Thanks everyone, and don’t forget to donate.