From Hope to Healing

During Marc's time at Sunnybrook Health Sciences Centre in Toronto, Ontario, following a massive stroke and brain bleed, a friend suggested I start a blog. I'd been making notes each day and updating his progress on Facebook but after some thought, I realized that this could be something that Marc could later read to follow his journey back to health.

I thought it might also serve to help someone else. If it can help even one other person to recognize the signs of a stroke or to help a family member understand what happens during this battle, then it was worth recording.

This is Marc's story. It begins with our hope for his survival and follows his healing journey.

For those of you new to blogs, you can find previous posts in the Blog Archive on the right side of the page. Each post has the date so you can easily follow along day by day. Just click the one you want to read. This story starts on Saturday, December 8, 2012.

(To see the earlier blog posts, click on "2012" in the Blog Archive section and it will open the posts from December)

Monday, March 11, 2013

Monday, March 11, 2013 - Milestones and Miracles

The weeks just seem to whiz by these days.  While Marc was in the hospital, the routine was predictable.  Now that he is home, our calendar is crowded each week with appointments, therapy sessions and other events.  Some days it seems I barely have time to breathe. 
During Marc’s physio appointment last Tuesday, he got some very good news.  He redid a balance test that he had done previously at RVH and this time he scored 54 out of 56.  Instead of a gold star he got the go-ahead to stop using his walker in the house. His smile was so big I thought his face was going to split open.  The first thing he did was go upstairs and put his own clothes away.  Then he emptied some garbage.  We don’t call him “Mr. Clean” for nothing. 
Marc’s balance is still not 100% and his left neglect is still an issue with his vision, so he needs to be very cautious.  He also needs to use a walker, or at least have assistance, while walking outside until all the snow melts, but he is enjoying every moment of this new found freedom.
We had our three-week case conference last week as well, with the members of the CCAC team who handle Marc’s various therapies.  The consensus is that he is still progressing very well and his OT and physio are continuing on a weekly basis to accommodate his recovery.  
We also got the ball rolling for Marc’s Ontario disability.  It takes a while to come into effect and we are awaiting forms to be filled out by the doctor before we can submit the entire package.
In the midst of all of this worrying about how we are going to pay our mortgage and simply survive before Marc’s disability kicks in and while I am trying to find work that I can do while looking after Marc and my mother, we had yet another “universe is listening” kind of moment take place. 
I received a Facebook message from a woman from my office who I really don’t know very well.  She just became a licensed realtor as Marc had his stroke and it turns out that she had been reading our blog and felt compelled to help.  She offered to do a fundraiser for us and I couldn’t say no.  Asking for help is not something I do well, but this felt a little different since the participants would get something out of it. 
Perdita contacted the Ferndale Banquet Hall here in Barrie and found out that it was pretty easy to set up a spaghetti dinner.  She would set up a Facebook event page and sell tickets and half the proceeds would go to our cause, which in this case meant helping to pay our mortgage.  It would buy us one more month. 
This Sunday evening we will sit down to a spaghetti dinner and afterward enjoy some live entertainment, courtesy of some very talented friends and family.  If anyone is interested in joining in this celebration of Marc’s milestones during this healing journey, you can find the details at this link.  Perdita chose to call it Stroke of Luck, which not only honours the name of this blog but also honours St. Patrick's Day. 
There have been many milestones the past few months and equally as many miracles for which we are forever grateful. 

Wednesday, February 27, 2013

Wednesday, February 27, 2013 - Letting Go

Going through a major medical crisis of any type is incredibly taxing.  From the onset of the medical crisis through the healing process, your life invariably changes in some fundamental way.  The person involved, and often their families, have to adjust to those changes. 
It’s like being plunged blindfolded into a large body of unfamiliar water.  You know the surface is up there somewhere but you can’t see it through that blindfold so you swim blindly upward trusting that you will survive.  You break surface, gasp for air and then are forced to swim for shore, wherever that may be.  At some point you realize you have to trust in the current to carry you back to solid ground. 
If you’re lucky, support will be there for you;  a safe place to land as you learn about your limitations and figure out how to set reasonable, attainable goals for yourself.  You learn that you have to let go much of what once was in order to make room for the new. 
Today during music therapy, Marc did just that. 
Rebecca taught Marc “99 Red Balloons” on the bass. Then she handed him some red balloons filled with helium.  As she played and sang, Marc wrote what he wanted to release onto each balloon, except for one. 




The Past
The final balloon was reserved for the message Marc wanted to send to the world.

And then he let them go.

Time to welcome in the new.

Friday, February 22, 2013

Friday, February 22, 2013 - The Second Week Home

The honeymoon is over. 
Someone, I forget who now, called the first week or so when a person returns home after a prolonged hospital stay “The Honeymoon Period”.    
I didn’t understand that expression at first.  How could that be?  Isn’t it wonderful for both the patient and the family to again be under one roof?  That’s why I can’t recall who threw out that term.  It was something I quickly dismissed, although I did find that it niggled in my brain from time to time that first week. 
Our first week was busy with appointments and getting Marc settled into life at home.  There was a new routine to establish and therapy appointments to fit into our lives.  It was rather exhausting but it was also very nice.  Marc was home and life was good.  We had adapted everything that needed adapting to Marc’s recovery needs and it was all working very well.
I knew the honeymoon was over last Sunday.   
We don’t take the walker upstairs at night because it is literally two steps to the bathroom and our bedroom is beside that, with the foot of our bed being just inside the door and to the right.  The walker wasn’t practical in this instance so we opted for me to be behind him as he walks those few steps.  I get up at night and walk with him to the bathroom when the need arises, ensuring that he is safe. 
That night I ended up sleeping just down the hall in our spare bedroom.  Marc had been tossing and turning when I went to bed at midnight and he was keeping me awake.  He promised he would call out to me when he needed to use the facilities. 
And he did.  Once. 
In the morning I awoke to a noise coming from down the hall.  I couldn’t place it so I peeked out the bedroom door.  There was Marc, very quietly inching his way out of the bathroom, clutching the door jamb as he rounded his way back into our bedroom. 
Later that morning in the kitchen, I turned to see Marc carrying his cereal bowl and walking across the kitchen to where he had left his walker. 
Busted.  Again. 
I was furious.  Did he not get it?  He is still minus a bone flap on the right side of his head.  If he falls and bumps it he risks death or possibly severe brain damage.  With his balance not yet at optimum performance, combined with the left neglect, it’s a recipe for disaster. 
He couldn’t see my point of view and I refused to yield to his insistence that he is “okay”.  My job is to get him well safely.  We spent a frosty two days until we were finally able to talk it out and come to an agreement.  He would use his walker at all times or have me as spotter until we could speak to his physiotherapist later in the week.  We agreed that her word was law. 
Needless to say, his physiotherapist wants Marc using the walker, or my assistance, at all times.  She was also our tie breaker on the issue of walking while holding the walker with one hand and a glass or dish in the other.  She reinforced what I was trying to get across to Marc.  Whatever he wanted to carry is to sit on the seat of his walker so he has both hands on the handles for safety. 
The honeymoon might be over but at least life feels much safer now, at least from my perspective.    
After that little episode, the rest of the week went much smoother and ended with a real treat.  We chose this afternoon to return to the rehab floor at RVH for a visit.  Marc and I wanted to visit his old roommate who is still recovering from his stroke.  It was wonderful to see him again.
It was also nice to visit the staff and some of the other patients that Marc had gotten to know.  Two weeks ago today they cheered Marc on during his victory lap as he left the care of the hospital and wheeled his way to reality.  Today he was back as a visitor, free to leave when he’d had his fill. 
We got such a nice, warm reception from everyone we encountered.  It’s hard to explain, but part of me misses the rehab floor.  Don’t get me wrong.  I’m very happy not to have to make the trek to the hospital every day and I’m ecstatic that Marc is home.  It’s just that being there had become such a routine.  Everyone was so nice and Marc got such great care.  That’s the part that I miss. 
The honeymoon may be over but now the real living begins.  Marc continues to improve steadily and one day we won’t have to battle it out over his safety. 
I can’t say that life is getting back to normal because what was once normal is now a thing of the past.  We are now working on the “new normal” and discovering together what this next chapter of our life will look like. 
I’m pretty sure that whatever awaits us, it will be an adventure.

Wednesday, February 13, 2013

Wednesday, February 13, 2013 - First Week Home

Phew!  What a whirlwind week this has been. 
Marc got home safely last Friday and we had a quiet weekend, partly because we were snowed in Friday and most of Saturday, but also because we had decided that too many visitors right off the bat wouldn’t be a wise idea.  During Marc’s home visits the weekend before, he got pretty tired out from all the visitors.  Lesson learned. 
Marc is doing very well at home.  Because my mom lives with us and has a walker, incorporating his walker into the mix was a no brainer.  Helping him in and out of the shower is also second nature.  We passed that test. 
The whirlwind part started yesterday.  We had an appointment scheduled for Marc’s regular music therapy in the afternoon but then had to add in his OT appointment as CCAC (Community Care Access Centre) is starting to set up their in-home therapy sessions. 
That was manageable.  Then we got a call from his new physiotherapist and yesterday was the only day she had an available appointment.  That made three therapy sessions in one day.  Poor Marc.  He did very well with it all, however.  It was also nice to meet his therapists. 
Tomorrow the CCAC case manager is coming by to meet us and so is the social worker.  We may never need her services, but it’s nice to know it’s available. 
Friday Marc sees our family doctor and then I think we’re free and clear for a few days. 
We know it won’t always be this hectic.  Next week there will only be three therapy appointments and they won’t all be the same day.  Life will start to ease into its new routine as we embark on the next phase of this healing journey.  Marc is home and he’s getting stronger each day. 
Tomorrow is Valentine’s Day.   We are planning a quiet, candle-light meal at home. No cards. No flowers. No presents.  We simply don't need those things this year. We have all we need.  We have each other. 
That’s more than I could have hoped for back on December 8th.   

Friday, February 8, 2013

Friday, February 8, 2013 - Home Sweet Home

It was nine weeks ago today, just after midnight as we were about to go to bed, that Marc suffered his stroke.  Nine long weeks that went from hoping and praying for his survival to cheering him on through recovery and rehabilitation. 
But when you think about it, nine weeks is a very short time, considering the severity of his bleed and that his chances of surviving were so slim.  Marc’s recovery seems like a miracle.  He has worked very hard to reach this milestone today. 
Today he got to ride out of RVH on a floor cleaner.

Okay, he didn’t actually ride out of RVH on a floor cleaner.  He didn’t even get to drive it and not because he got busted before he had a chance.  No, for once Marc got permission to do something. 
Earlier in the week Marc jokingly told Catherine that he should drive one of the floor cleaners to practice his driving before returning home.  The next day, Catherine surprised him by arranging for Marc to pose on a floor cleaner for a picture.  She emailed it to me after.  Just another reason why we love the rehab staff!
I woke up this morning to piles of snow in the driveway from a massive snowstorm that had blanketed the area since last night.  I was determined to get to the hospital for 11:00 am so I could meet Marc after his pool therapy and attend his graduation ceremony from rehab. 
I shovelled the porch, around the car and down the driveway to the road.  I just needed enough room to back the car out and I could worry about the rest later.  Just as I finished, I realized that there was no way I’d be able to get the 50 feet or so down the side street to the better travelled street onto which our house fronts.  We live on a corner and our driveway is on the side street.  Our small side street rarely gets plowed this early on.  My heart sunk as I realized that it could be closer to evening before they got to it. 
I started to cry.  I don’t think I’ve cried that hard since the night Marc had his stroke.  I was devastated to think that we had made it nine weeks, through all the hours of rehabilitation, just have to miss Marc’s final day and his graduation ceremony. 
I looked up at the sky and said, “Really?  You’ve got to be kidding.  We’ve come so far.  I need a snow plow right now so I can shovel out and get to the hospital.  Please.” 
I went back into the house and sat down with a cup of coffee.  I haven’t missed one day with Marc since this happened.  How could I possibly miss this?
Before I could figure out a way to get to RVH, I looked out the window to see a snow plow going up our side street.  I was dumbfounded. Someone up there must have taken pity on the woman standing in the snow having a meltdown.
I quickly cleared the mountain of snow the plow had dumped at the end of the driveway, had a quick shower and I was ready to go.  Just as I was leaving, a neighbour came by with his snow blower and cleared the other side of the driveway. 
I took this picture out of Marc’s hospital room window.

The rehab floor has a tradition.  They get their “graduates” decked out in their farewell outfits, stick a sign on the front of their walkers and clap them through the hall to the nurse’s station on a victory walk. 
Marc was one happy looking pimp. 

A final pose with his rehab angels.

I tried to take a video of Marc’s victory walk but all I managed was one second at the start and one second at the end.  I was crying (again) and hadn’t noticed that my phone’s video had clicked off. 

I was really upset to realize that I’d missed capturing such a momentous occasion.  I was being pretty hard on myself until Marc reminded me that we no longer sweat the small stuff and that at least I was there to share it with him. 
We made it through the snow storm and finally, after nine weeks, Marc arrived at home for good.   
We made it through the scariest time of our lives but we are together again and we will tackle this next chapter of our lives together.  Marc will continue his therapy and his path along this healing journey.  I will figure out how to support us and my mother.
Marc has taught me a lot the past nine weeks.  He taught me that we can face any obstacle and if we try hard enough, we can move past it. 
I have no doubt that there will be many more victory laps in our future. 

Thursday, February 7, 2013

Thursday, February 7, 2013 - One More Sleep

One more sleep. 
That’s how much longer we have to wait until Marc is home for good.  Just one more little sleep. 
Last night’s overnight pass was great.  Marc is still healing and is used to the hospital routine of going to bed early, so he conked out at 9:00.  He was wondering how he’d feel sleeping in his own bed again since the last time he tried that, back on December 8th, it didn’t end well.
Turns out he had nothing to worry about.  He said he was asleep before I got down the stairs after tucking him in. 
I was worried that I’d be worried about him during the night and wouldn’t be able to fall asleep.  That worry was unfounded as well.  I only woke up once.  It was so nice to have him lying there beside me again. 
So much for all this worry.  The night went better than both of us expected so we feel very ready to get our lives back. 
I dropped Marc back off at RVH at noon in time for his physio.  They can have him for just one more sleep.  
It feels like Christmas Eve.  Tomorrow I'll get the best present ever.  Marc.   

Wednesday, February 6, 2013

Wednesday, February 6, 2013 - Overnight Pass

Marc had physio in the morning today so when I arrived, there was only music therapy before he was set free for his overnight pass. 
I just love how Rebecca manages to tie so many things into each session.  Working on the drums was great for following direction, coordination, left neglect, reading, and concentration.

After some practice, Marc was ready for more of a challenge. 

More listening and coordination.

Next week, Rebecca is going to meet us at our house for music therapy.  I’m sure she’ll be happy not having to lug all those instruments through a big hospital.  I know Marc will be happy to see her.  I think music therapy is the highlight of his week, especially since she is teaching him to play the bass guitar during part of each session. 
Marc is now home for the evening and seems pretty content sitting in his chair, watching our favourite t.v. shows. 
We could get used to this.