Saturday May 8 – Quinn’s Birthday
It’s Quinn’s Birthday today. He is eight years old. He climbed into bed with us first thing this morning. His little warm body curled up between us. For a few moments things seemed as they were before your stroke. Cozy and comfortable … then I heard you groan as you try to shift positions and the reality comes racing back.
Sleeping is difficult for you. You seem to sleep fairly well, but you are very stiff in the morning and it is very difficult for you to get up and get going. I think the big part of it is that you are stationary laying on your back every night. You can’t shift your weight from side to side like you could before the stroke.
This morning is the ‘Doctor’s Nova Scotia Fun Run’. The children have been ‘training’ for the past six weeks. Tara took this undertaking very seriously. The school had a running club every Friday. Tara dutifully filled out the training diary every day in the running handbook that was handed out to the club members. Quinn took a less serious approach but still ran hard and kept up to the older children.
At the Fun Run, the announcer mentioned you and your journey to wellness and also Quinn’s birthday. Both the children were pleased with your notoriety. The children ran their laps of the track while you and I cheered them on.
Quinn’s birthday was a bit of a disaster according to Quinn. Last night, I stocked the pond in our back yard with 8 koi for Quinn’s birthday. This morning, you send him outside to look for them. They can not be found. Quinn is sad that his birthday present is missing. I tell him that they are probably hiding, but he is not convinced. He thinks they are dead. The night before, I had hidden his unwrapped presents in the closet with Annie’s food. Quinn was the first on up this morning and when he fed Annie her breakfast, he cried out. “I’ve seen my presents, now my birthday is ruined.”
We try to salvage what we could of the presents to make it fun. I think Quinn feels we fell short. Then the all boy birthday party proved to be another disappointment to him. In the past, I have always planned and executed great parties. Lots of activities that wore out the children both physically and mentally. Last year we had an elaborate scavenger hunt. I knew earlier this week that I could never compete with the party last year.
The ‘all boy’ party was a mistake. I realize when I watch the other boys play that Quinn is not a rough and tumble boy. He is sensitive and empathetic to others. When he saw a little rough play that lead to a little bullying, he got upset. I think having a big sister has had a big influence on him.
Tara and you save the day and get the boys to play less aggressive games while I talked Quinn into coming out of the tree that he hid in and then out of his bedroom. By the time I got Quinn back to the party, Tara and her friend Lindsay, had the boys playing a word association game … of all things.
This was the pivot point to the party. Things got better and the game that you invented: ‘Coin on a Stick’ was a great hit. By the end of the party, he was having fun and the day ended well
Sunday May 9 – Deja Vu … all over again. Rehab revisited
It’s been at least a couple of days since you have cried.
The last few days have been easier. I think it is because that, while I haven’t accepted your smoking, I have accepted that it must be your battle, not mine.
Quinn’s fish in the pond are mysteriously missing. I wonder if a predator has been at work. So the children and I spent the morning cleaning out a tank to house some replacement birthday fish.
We visited Mum today at the rehab unit in Pictou. It is a smaller facility then the NSRC in Halifax. Mum is upset already with the care she has gotten since Friday when she moved there. She was isolated until the MRSA cultures came back. So we had to gown and glove to visit. We were allowed to bring Mum’s dogs, Poppy and Tilly. They didn’t have to gown and glove!
Visiting rehab again seemed wired. You and Mum exchange stories about your hospital experiences to date.
Monday May 10 – Making Connections
We opened the bank account today for the SMC program. You had the bank clerk in stitches with your comments. I love to watch you make friends so easily. It is a real joy of mine. It is a talent that, I think, has been enhanced by your stroke. I know that sounds weird, but it’s true. You act like you have nothing to lose, you are an ‘open book’ as you say and you reach out to people. I think it helps you feel more human.
Tara and I went to see a psychologist – we put our heads together to think of ways that you can connect with the children.
I think that in time you will be able to make connections easier with the children. Your humour and sensitivity is still there. I think it must be like learning to walk again. It will take a little time but you will be able to do it … just a little differently.
Tuesday May 11
You woke this morning with a stabbing pain in your back. I’m concerned that your core muscles are weak and that your spine is at risk. I think it’s your sacral iliac joint that is loose. I don’t know how to help you with your core strength. So many exercises that are used to increase core strength require some strength on both sides.
Wednesday May 12
Tonight I write an email and mail it out to all the people on our email list who have visited you in the past or expressed interest in visiting. I made a plea for volunteers to help with the visiting schedule. I know that the energy that I expend on organizing and worrying is not sustainable. I know that I have to ask for help.
I’m not good at asking for help. I have learned over my adult years that asking for help is not a sign of weakness, but a sign of strength. But it still goes against my default button of being fiercely independent. Lately, whenever my default button flashes in my mind, asking to be pushed. I think about your loss of independence ... the empathy, I feel for you, forces me to seek help.
My email looked like this:
Chris and I would like to thank all the people who gave us support in our journey since August. Your words of encouragement and strength as well as practical help has been very special to us.
As of April 23, Chris has been home. I had been looking forward to this for a very long time. I thought that this would be the end of our marathon ... but it's not. It's the beginning of a new leg. Now that we started a new leg, we find that we need a new type of support.
I had thought that Chris being home would be easier then in the hospital. The first two weeks were strained with emotions and schedules. The pace has taken it's toll on us. I realize now that this is not something that we can do alone. They say that it takes a village to raise a child ... well it seems that it also takes a village to help heal the weak.
Chris can not be left alone for any length of time. The left-sided weakness along with the blindness and left neglect leaves him at a severe risk of injury. Thankfully we do have homecare support come into our home for 32 hours a week (M,W,Th, F). I am hoping for more hours so that my whole work schedule is covered. The home care support leaves at 3 pm each day and I don't finish work until 4-6 most days and later on Tuesdays. There is no homecare arranged for Saturdays and I am scheduled to work the occasional Saturday.
This situation will change once we find a support worker who we can hire through a provincial program called 'Self Managed Care'. This program helps provide funding for 32-40 hours a week.
This is where you might be able to help. We are looking for volunteers who can bring a positive attitude and energy to Chris and might be able to visit with Chris during the following times:
Tuesdays: 4:30 pm to 8 pm
Wednesdays; 2:30 - 5:30 ish
Thursdays: 2:30 - 5:30 ish
Fridays: 2:30 - 5:30 ish
and the occasional Saturday 9-3
If you can't visit at these times ... that's OK, any visiting is good and benefits Chris' physical, emotional and mental health.
This need will be long term. The doctors feel that there will be minimal improvement at this point in Chris' recovery. I hope that if we can have a large enough list of volunteers, then the commitment from any one person will be manageable for them. If you have children, bring them along. Chris loves children and so do our children. We have a great backyard that is very 'child friendly'.
Our Deep and Sincere Thanks for All the Love that has sent our way.
Gwen and Chris
I found out today that we have no one to stay with you on Friday. Once again, I am scrambling to find someone to hang out with you at the last minute. I am tired tonight. I was feeling sorry for you and for me. I just want to stop the world from turning so I can catch up.
Thursday May 13
I have been frustrated with my attempt to find candidates for your self managed care. Things always seem to fall into place for no reason. Today was no exception. On my way to work today, Annie and I walked a different route then we usually do. It wasn’t a conscious decision, it just happened.
It’s a beautiful morning and my thinking is clear. I have an epiphany of the day: Rest is something I have to prioritize. I have always thought of sleep is just something that happens when you can’t go any more and before you have to get up and get going again. I was wrong.
Like with most things in my life, if I prioritize them, they get done. Saturday, the first thing on my list “To do today’ is sleep in. It seems ridiculous that I have to prioritize this but if I don’t, it won’t happen and I need it to happen. I am getting drained with worry and schedules.
I want to stop the world from turning for a few minutes so that I can catch up with everyone else. I feel like I am constantly trying to gain a little control in my life but every time I manage to control one aspect, another aspect starts to do crazy things.
I have also been foiled in locating someone to fill in on Friday afternoon. But happenstance happened again. I had came to the conclusion that I would have to re book some appointments Friday afternoon so that I could go and get you and bring you back to the animal hospital to wait for me to finish work. Just as I was going to talk to Cecelia, at work on the front desk, I meet Trish at the front desk.
Trish and her brother, Mike, are wonderful doggy people who had moved here from Calgary a few years ago. Trish is an EMT and worked, for the last little while, in a remote area in northern Alberta. She had just returned home. She has followed your story through the blog from the beginning and has been inspired by your story.
She is home now for a while with the hope that she may find employment closer to home. Mike, who is a co-provider for their dogs, has offered support to us over the last few months when he has been in with Sasha and Meeka. The two of them are overflowing with positive energy.
Trish asks how you are doing now that you are home. I smile at the weird ways things unfold at times and reply “Are you doing anything on Friday afternoon?”
It turns out that she is free! Tomorrow, you will make some new friends.
We get a few responses from the mass email that I sent out on Wednesday. Slowly gaps of days are being filled in to help with your care.
Friday May 14
Tonight I overhear you say to Trish that you feel better about smoking now that you have come clean with the confession. I cringe when I hear these words. While a confession should absolve you of guilt, it should not be used as permission to smoke.
Smoking isn’t just about you. Smoking steals time away from me and the children, it steals your health and our family’s future it even steals our family finances. Smoking is a bad choice. You have to remember that you are a good person who is making a bad choice. The addiction is forcing you to make bad choices.
Trish and Mike are fast becoming your new friends. You have a lot of things in common with them and their enthusiastic attitude is contagious to me and …I think …to you too.
Hollis came by to visit just as Trish and Mike left. The two of you talk as I clean up the kitchen. Hollis has been a bit of a coach for you. He has the uncanny ability to pop into our lives when he has a timely message to deliver. Today was no exception. This time his message had a new prospective.
“You got to just get doing things.” He said. It’s been 18 months since his stroke and if you meet him for the first time, you would not know that he almost died from a stroke. He can walk, talk, drive a car, make a meal and do many things about the his home. To look at him, you would think he is normal. But I’ll bet he has a black spot on his CT scan. He knows he does because he knows he has losses that aren’t obvious to us.
“You have a brain that you can use.” Listening to him, I realize that his challenges are invisible to us. Strangely, he sees the abilities that you do have much clearer then you (and I) and all you see are the abilities that he has that you don’t have.
Listening to this conversation from the outside makes me realize that you and I have a lot more to understand about what it is like to live in a stroke survivor’s mind. No two stroke survivor’s are the same in their losses and their abilities.
Saturday May 15 – Everything Will Always Work Out for the Best
Well, the ‘sleep in’ thing didn’t go as planned. At 7am, which represents a 20 min sleep in to me, you wanted to get up. I groggily got out of the warm bed and got you up and settled at the kitchen table. You wanted go outside to smoke. I know if I take you outside, the cool wind will blow away any chance of me going back to bed. I refused and slipped back into bed and slept for another hour and a half!
You did get outside while I was asleep. Lucky for you, Tara is a morning person, she helped you outside. The children are becoming very helpful with some of the day to day tasks that involve your care. Tara has learned how to assist you to walk. It doesn’t take a strong person, just someone who can stay focused and watch your left leg move. Quinn is your water boy. Actually he is the ‘other water’ boy. He has been helping you with the urinal since Christmas.
Later today when we were talking, you were down. At one point you didn’t want to talk to me. I had just made lunch and you didn’t want to eat it. Quinn witnessed this exchange and looked scared. I pointed out to you that our exchange was being witnessed. You looked at Quinn and then sat down at the table and ate lunch.
It’s hard to continually be thinking about other people’s needs when you have so many needs yourself. I think in many ways we were blessed with the children at this time in our lives. Without them as daily reminders that there is a world outside of your imprisoned body, I think I would have been lost a long time ago.
You have been complaining about being cold a lot lately. I wonder if it is just because your metabolism has changed from that of a marathoner to that of a very inactive person. I am worried that it maybe the result of the brain injury. In the early days of your stroke, you had a difficult time maintaining a normal body temperature. Perhaps this is a legacy of damage to your hypothalmus and maybe be causing hormonal changes, or maybe a side effect of your medication. There I go again, over analyzing things to the point of worry. I know it serves no purpose – but my mind takes me there anyway.
You were so cold, you wanted me to hug you and hold you. I did but it just didn’t seem like a good long-term solution. I suggest that you get into the hot tub. You have been in it a few times before. It’s a little scary getting you in but do-able. This is the first time I did it by myself. The entrance into the tub went smoothly, but you cried while you were in it. You were scared but you couldn’t tell me why. Is this anxiety a legacy of the stroke too?
We talk and I tell you how saddened I am when I see you not trying to do things. I know that I have a tendency to wait on you and I have to check myself consistency so that you do things for yourself. Earlier today, you expressed a need to use the urinal. When I suggested that you use the toilet, you insisted on the urinal. I was frustrated and viewed this request as the ‘easy’ route for you. I sad, “Urinals are for the hospital. You are at home now, you should use the toilet. It is good exercise to walk down the stairs to the toilet.” You took my comment as a criticism. This hurt your feelings. You were down the rest of the afternoon.
After the family hot tub session, I got you out and dried and we cuddled on the sofa. I told you that when I see you trying to work at your recovery, I feel strong and I can do anything and everything that it will take to make things happen, when I see you give up and stop trying which includes the smoking, I feel completely drained of energy ...I want to craw into a hole and die.
I can not let your attitude to your recovery affect me like this but it does and I don’t know how to overcome it.
My biggest fear is if you decide to quit trying. “What will happen to me and everyone who is counting on me?” You ask.
“Ultimately” I said, “I have to believe that everything will always work out for the best. This thought has always carried me through many tough times.”
“Don’t you mean everything happens for a reason?” You said.
“No!” I replied, “Things always work out for the best is about my attitude … which is the only thing that I can have a little control over. ‘Everything happens for a reason’ suggests that control is in the hands of someone. What if things are random and only the attitude you adopt is controllable? It boils down to you having only two choices.”
You finish my thought. “To quit or to try.” You are quiet after this thought permeates your mind. “Maybe I will go to bed with Quinn tonight.”
I am so pleased to hear this because few weeks ago you had mentioned that one of your strategies to quitting smoking was to go to bed early with Quinn so that you could sleep away the urge. You and Quinn are in bed by 9 pm. I check in on you at 11pm and you are solidly asleep. I even try to wake you gently, but you continue to conquer your urges with sleep.
When I tucked Tara into bed, I find her looking at a photo album that dated back to when she was 3 to 5 and Quinn 1 to 3. “It’s fun looking at the pictures.” She says. “I wish I was that age again. I had so much fun then.”
It’s very sobering hearing your ten year old reflect on her life when she was five and wish she was that age again. Oh boy, it’s hard to imagine whether we will ever have that kind of fun again.
I just have to keep the faith. Everything will always work out for the best.
I got a phone call from a girlfriend from veterinary college. Marnie and I were roommates and shared many university experiences. Tonight we shared stories about our families and how we are coping with the obstacles put in our life’s way. Listening to her voice transports me to 25 years ago. Her bright quick talking nature is unchanged over the years. It’s good to hear her voice from our past and thoughts about our present. Talking to her reminds me of the advice I gave to you earlier tonight.
Everything will always work out for the best.