Wednesday, March 31, 2010

Sunday March 28 – The Seven Year old Adult

You start the day in parent mode. First thing this morning, you advise Quinn, “I want you to have fun today. Do your best and have fun that’s all that anyone could ever want. I am very proud of you.” Quinn smiles and says “I'll do my best.”

We actually got to the meet a few minutes into the warm-up period. As we get in the door, Quinn pauses and says to us in a serious parent like tone, “When I’m on the floor, don’t try to get me to leave the floor because I’m not allowed to leave and I shouldn’t be distracted.”

In past meets, we would try to see how many times we can get Quinn to wave to us during the event. I guess those days are numbered – he is growing up. We watched and I tried to videotape Quinn doing his events. Quinn did do his best and was quite pleased. So pleased that he actually took a moment to wave to us a few times. He was rewarded for his efforts with a ribbon for the pommel horse and a Dairy Queen lunch with us. He had a good morning.

We met up with Tara when we got back into town. Her choir, the Truro Youth Singers, performed at the church. She wanted to see Quinn do his thing but was torn about the commitment to the choir. When it came down to it, she chose the choir. Although I’m sad she missed seeing Quinn’s meet, I’m glad that she has a strong sense of commitment to the choir. After all a choir is a team thing.

I suggest in the afternoon that you help Quinn make the devil sticks. You don’t want to do devil sticks with Quinn. “I am useless I can’t help him.” You say. You can’t imagine how you will be a role model to the children when you can’t find the drive to do a simple thing like oversee a project like this.

The other day, I had suggested that Tara could go to a movie this afternoon. When it became obvious that I can’t leave you alone for fear of you trying to get up by yourself and falling. (you have done this twice now – when I’m out of the room.) I had to renege on my offer of a movie. Tara couldn’t take this decision without complaint. She has wanted to do things with her friends for months now. I have been putting her off, saying, “It is just for now, when Daddy is home, life will get more normal.”

“Well, Daddy is home and I still can’t do things with my friends.” She cries. I explain that we have all had to make sacrifices and that she would have to be patient. I said she should consider the sacrifices that you had made just to live. This just frustrated her more and she stomped off to her room. She is angry at you and angry with me.

You start to sob about being a burden. Quinn puts his arm around you and tell you, “We want you in our lives Daddy. We want you here for us. You are still the same Daddy. We love you.” Quinn’s kind and supportive words without tears seemed very grown up. This is our sensitive little boy, who would cry and not know why at other times. Now he is supporting you.

I could hear Tara’s crying in her room. I go to her – she doesn’t want to talk. Finally she does. Tara feels like an outsider – not able to go to the movie and then we all missed her in the choir performance. We both have a good cry. As I am trying to collect myself, Quinn comes and reaches out with open arms ready to give a good strong back-patting hug.

Tara’s melt down lead to your and my meltdowns. Quinn carried us through it all with hugs and positive thoughts. He is a seven year old adult.

The children and I recover from our weak moment and continue with our day. You can’t climb out of your despair. You start to cycle through the ‘I don’t want to be a burden’ dialogue again.

We all have bad moments and times of weakness. That’s way we need each other… to help the other through the rough times. Today was Quinn’s day to carry us. Tomorrow it will be someone else. We are all here for each other. It is a team thing.

Shortly after this, Erin arrives at the door, as if sent by a divine power, she comes to your side to hear your worries and help you deal with them. Within a few minutes, Harold arrives and he sits beside you with his arm around your shoulders, lending an ear and a thoughtful voice to your fears. Being a fellow survivor who also knows the pull of cigarettes, he can identify with your feelings.

What gives us meaning in life? Some might say being essential to another’s wellbeing is what makes us human. I think that is a trait shared by all animals but it is something that humans tend to forget but it is the healthy part to any relationship.

By the evening, I find you and Tara are cuddled in your chair. It’s bedtime for Tara but I didn’t have the heart to pull her away. The two of you had made up.

On Friday’s Tara and Quinn joined a running club at the school thanks to Karen, a teacher at the school who watches over Tara and Quinn on Fridays. This week they were given handbooks to read over about living a healthy active life. Being a detail oriented person, Tara has started to fill in the diary section that tracks what she eats and the activities that she does. You are proud of Tara for being so diligent. “If you run 20 km then I will give you my GPS watch.” You tell her.

She is happy now, She has a short term goal.

Saturday March 27 – Finding the Good Guy

This morning, Quinn’s eyes light up when we showed him the devil sticks that we ordered for your PT. Enclosed with the devil sticks is a booklet outlining the other juggling things that one can order. Quinn immediately starts to plan how he is going to make money so that he can buy other juggling gear. A diablo is next on his ‘to get and do' list.
The two of you talk about how he can make devil sticks to sell. Quinn and I make a short list of things we need. We got all the things we needed to make several devil sticks at Home Hardware for the cost of one set online. He is very excited about this as a project.

You visit Donald again. It was a much better visit then last week. Donald was very tired before but you had a good chat today. Later in the day Janice, from the church, came to visit you. She offered up news of the church and her recent visit to Australia. You really enjoy your visit with Janice. The two of you have a special relationship as co-workers at the church. She misses you at the church. She started running, partially, because of you. This summer, she is off to Iceland to run in a half marathon to raise money for diabetes research.

Today is my Mum’s birthday. We had dinner at Juanita’s. You and Mum seem to have more in common now with all your combined hospital experience. Between you having a more talkative nature and wanting to share, the two of you talk more the I ever seen you talk together before.

Tara is spending the night at Juanita’s because we are double booked tomorrow. Quinn has a gymnastic meet in Sackville and Tara’s choir has a performance at the church in the morning. I insist on making it an early night. If we can make it to Sackville by 8 am, It will be a miracle.

At bedtime you reflect on the day. You are searching for your roles. “Visiting Donald is one thing that I can do.” You say. “I am a nice guy and I want to be really good to the people in my life and show them how much I care about them.”

Somehow you have forgotten that you are a good guy. Connecting with family and friends will help you find the ‘good guy’ inside you again.

Friday March 26 – Bedtime Stories

I talked to a psychologist today at work. She is a dog person and visited today with one of her dogs. I asked if there are different psychological approaches for post stroke recoveries verses other mental health issues. She said that there are. The psychological staff at the NSRC had suggested that your care would continue when you come home. I am very relieved knowing this because like every other part of the brain, I can see that this brain part heals slowly too.

After work today I rush about picking up a few things to help Chris-proof the house. I bought a bath bench and shower nozzle. I found a few more things that I need for your sling glide to the bathtub.

The OT suggested that we get a ‘M-rail’ for the bed. I am unsure what an M-rail does but a I do know that you have difficulty pulling yourself up to the head of the bed. You need a grip to pull yourself up, so I strategically placed a large eye in a stud and tied an old dog leash to it. This should work well to pull yourself up to the head of the bed.

We haven’t got the toilet seat frame yet but I have a borrowed commode over one toilet and a 2x4 screwed to the counter beside the toilet that enables you to use it to push up. You tested the system first thing when you got home. Once you got settled on the throne, you shook my hand and delighted in the effectiveness and simplicity of it. You want to use your wood craving things to finish the top of the 2x4 off nicely and I know two children who would love to paint and decorate Dad’s ‘push up posts’!

No phone call last night – big mistake – I should have called – you were worried. There was no answer and then it was busy and then it was after 10pm when the patient switchboard shuts down. You worry about things that would never happen. Logic tells you that you these are not rational thoughts but you still think and obsess on them anyway. You can’t help it.

I asked if you smoked. “Yeah, three.” “Oh no” I groan, “Really?” “No, but I thought about it a lot.” You said. I am proud of you. One day at a time. This is another week under your belt ... a lifetime to go.

Juanita and Wayne brought you back from the city. The first thing you want to do once you are in the house, was go to your mancave. This is the first time you entered it on your own steam since August 30th. You give a big sigh and said you felt like you were home. You quickly get settled in but struggle with your TV remotes but that is excusable – I struggle with your three different remotes. It turns out it wasn’t us at all, it was the a cable problem. A quick phone call fixed that.

You are not as interested in TV since your stroke. I had feared that the stroke was going to make you into a TV watching zombie. You are far from it. It seems that the only things you like on TV are reruns of your old favorite comedies. Steinfeld, Friends, Corner Gas. I ask you if you want to watch the mountain of baseball games that I taped last fall during the playoffs. “I don’t understand it anymore – I tried watching some spring training games but I can follow them.”

While this may be music to the baseball widow’s ears, I worry about what this means. Is this a symptom of other deficiencies that we haven’t identified yet or is this something that just has to ‘reconnect’ again? Watching MLB, especially your beloved Angels, was a passion for you. If this passion is lost, what other passions are lost. I hope that this is just a sign of an inability to concentrate for long periods. With time, I hope it will come back.

At the children’s bedtime, you read to them. ‘The Diary of a Wimpy Kid’. I tidy up your mancave so that it is free of tripping hazards while you read. You didn’t miss a single left margin while reading. This is a big improvement from Christmas time. Time seems to have fixed this. I am glad because the local home care coordinator dropped of a rather thick booklet about self managed care. It explains everything you need to know as an employer. We have some lengthy light reading to do together. That will be our bedtime reading

Tuesday, March 30, 2010

Thursday March 25 – Homecare Plan is Taking Shape

Today I got a call from the homecare coordinator at the NSRC and also the local contact. It turns out the local coordinator is a neighbor. She feels that the self-managed care program would be ideal for you. She must perform some cognitive tests done first to ensure that you are able to supervise a self-managed care program.

In essence, a self-managed care program allows you to hire a person and develop an employer – employee relationship. Once that this is in place, the provincial homecare program will give you funds to supplement the cost of your home care. This system provides a lot of latitude. We can hire who we want and can direct the employee to do specific tasks to help you through your day. A job description should be done and an evaluation to provide feedback. With me working more, we would need someone for full time hours.

To start the local homecare coordinator envisions home care for about 6 hours a day starting at 7:30 or 8am until 2 pm. After this point, we would have to arrange of someone to be with you the remaining time that I can’t be home. This is where friends and family will be a huge support.

I feel really good today – almost enthusiastic about the future – a lot of the reason is because you are feeling positive and I can see a plan taking shape with you at home..

After piano lessons, the children and I go shopping for a shower nozzle and grip bars. Tomorrow I will get a bath bench. Tonight, I installed supports by the toilet for you to support yourself with when using the throne. They are simple and made with a couple of pieces of 2x4’s but I think they seem to work well. You will get to try them out this weekend.

I missed talking to you today. When I tried to call, there was no answer. Then the next thing I knew, it was after 10pm and the patient calls won’t go through after 10 pm. I hope you don’t worry about me not calling.

Wednesday March 24 – Thinking Like a Parent

When you have a good day – so do I. I slept well last night and awoke this morning full of energy. Our great phone call last night still has me floating above the clouds. I can see a 180 degree turn from this time two weeks ago. I think the last week in Halifax together as a family and the weekend home and visiting Donald, Marsha,Chris G and the church was instrumental to your mood shift.

Spring is coming and I can feel it in every way.

This morning, I spend a long time on the phone, Bringing people up to date on your progress. I have started a list of people who might be able to commit a few hours here and there to spend with you to help with your homecare when you get home. With my somewhat erratic schedule and being oncall at times the 24 hour adult attendance is going to be hard to achieve.

We will have to be creative in how we do this. Eventually, we may not need an adult with you at all times, but until we can find a routine and establish some safety rules and provide a safety net for you, the 24-hour supervision is a must.

You had another good day today. You have a strong voice and you have hope.

“I think I know what I want for a tattoo on my left arm.” You say. “A unicorn, with the date of the Boston marathon when I first ran it and a space for the date of when I run it next.” The unicorn is a special symbol because it is part of the Boston marathon logo.

I ask you what you think about signing the children up for soccer this year. They did love to play soccer but transporting them could be difficult with me working. We decide that we should all take the summer off and just spend time together as a family. “We need to find our roles again and just hang out together.” You say. I have to agree. This summer would be a good one to take off from the usual running around between soccer and day camps and baseball and swimming. We need time just to be a family again.

You are thinking like an insightful parent.

I tell you the plan for the weekend. You are going to come home with Juanita and Wayne on Friday and stay until Monday morning. This way, you will get to see Quinn at his gymnastics meet on Sunday morning.

I tell you that Quinn was sad again at bedtime. It seems to happen a lot. I think that when he puts his head on the pillow, he starts to take stock of his day and think about the future and counts days. Thinking about all the days that you haven’t been here makes him sad.

I really think the time you spent at home last weekend has helped you start to see a future that isn’t so bad. “When I get home, I will need lots of rest. I want to let Quinn sleep with us occasionally. I think it will be good for both of us.

There you go again … thinking like a parent.

Tuesday March 23 - Hope Blooms

It was a late morning this morning. The children were hard to get out of bed and I found it hard to get going too. It’s the weather I think. Last week seemed surreal with the great weather now a gray wet day seems disappointing. We walk to the school knowing that ‘late slips’ are a given. Tara tells us about the best dream she ever had. You were in it of course. No wonder she did not want to wake up. “I want Daddy to come home … I miss him.” She says.

I notice that the crocuses are coming up that Paula planted in the garden last fall. When the bulbs had arrived in the mail, I was in a frenzy. I felt overwhelmed. Everything seemed out of control and just as I was starting to think I couldn’t do any more things, the bulb order that I made before your stroke came in the mail. I couldn’t imagine when I’d find time to plant the bulbs. Then Paula, a fellow parent from the school, offered to do some gardening for me. Now the fruits for her labours are emerging through the soil and will be blooming within the month!

I find it so exciting and comforting to see a plant make it through the winter. When I see the crocuses emerge through the soil, I think about the miracle of life and it gives me hope.

On the walk to work, Annie and I got behind a smoker. The smell made me gag. How could I not notice that you smoked? The smell is so strong. Maybe I am just extra sensitive to it now since your confession and my subconscious amplifies the smell.

A long-term client, Margo, brought in her new puppy today. She and her husband have always been cat people. Margo lost her husband, Gordie, a few years ago. Now she still has cats but she has also gone to the dogs.

Gordie had a stroke too. He survived the stroke only to be taken by cancer a few years later. She shares with me her experiences. “Cherish the memories that you had before the stroke. They were a gift and now you have a new gift. A gift of a second chance.”

Your PT was sick today. She had come to work but you told her that she should go home and look after herself first so that she would be able to help you and other patients later. After your session with her she went home. You want to get her a special present for your graduation day from the NSRC. “Devil sticks!” You exclaim. “I want to get her devil sticks.” Your PT seemed to really enjoy playing with Quinn’s devil sticks last week.

We had gotten the devil sticks in Newfoundland last summer. Erik had taught the children the basics of the craft and Quinn has been perfecting and experimenting with them ever since. Your PT seemed fascinated with them. She started twirling the flower stick right away like she had been doing it all her life. I think she must have been a majorette in a past life.

Devil sticks would the perfect present for her.

You sound good tonight. You seem strong and positive about the future. I love talking to you when you are like this. Your strength is contagious. When I called Fran shortly afterwards and Luiz answered. He said “Your voice sounds strong and good.” I guess that your strength is contagious.

When you have a good day … my day is great.

I am falling for you all over again. Where have you been for the last few years. I had lost track of the great guy that you are. This stroke has brought you back to me. Your positive energy is spilling over to the future. “I want to work on who I am now and get better.” You said. “I need to find myself and my place in our family when I get home.”

You had a dog visitor today. A Lab. He was a nice dog and you enjoyed seeing him.
Whenever you met a new dog, your first gesture to make friends with the dog was to put your two hands together and make a squeaky noise with the palms of your hands pushing together. This seemed to always interest the dog and fast tracked your friendship with any canine.

You can’t make those sounds anymore. “I need two hands to make the sound.” But rather then dwell on it, you simply say. “We should get another dog. One that I can train.”

We talk about the spring and summer that we are looking forward to. The Cabot Trail Relay is on the last weekend of May. We are all very excited about going to Cape Breton or ‘Cate Brookin’ … as the children used to call it. Probably because we would always visit our friends Kate and Brook and their family. This year Annie will get to visit with her sister and two brothers and her mother. It will be a great time.

As we talk about this I realize that Tara’s dance recital is on the same weekend. “Oh no” I gasp. “How am I going to tell Tara?” You jump right into parent damage control mode. “Let her know and let her make the decision of what to do. I know if she is prepared for the choice, she will decide that she would rather see her special friend, Linnaea, more then dance at the recital.” I know that you are right. Your parenting intuition is right on.

Tonight Quinn and I put up the last handrail to your room. Now the whole house is assessable to you. Tomorrow, I am going to get a bath bench, shower attachment and install small posts in the bathrooms by the toilets to make getting seated on the toilet a little easier. Then, all we need to make is a hand rail to the garage and all the significantly big things will be done.

At bedtime Quinn started the counting again. Counting to the weekend. Three days. Counting to Easter. Twelve Days. Counting to the days until you come home. Thirty days. And finally counting to his birthday. Forty-six days. I think this is his newest stalling tactic to prevent an early lights out.

Tara decides to compose a song for your. As she lay in her bed, she hummed a tune while searching of the right words in her head. This song is for you and she wants to call it ‘Together Forever’.

Paula planted bulbs last fall and they will bloom soon. HOPE. Last fall, I planted my love and time with you and it is starting to bloom too. More HOPE.

Monday March 22 – Find Our Family Rhythm

I have been thinking about my ‘Me time’ as you call it. Right now Walking to work with Annie is my Me Time. This morning I opened an email from a friend. Sue’s email was about dogs, a subject close to both our hearts. It suggested that dog’s purpose is make you stop and think and appreciate the moment. “When someone is having a bad day” It said, “Be silent, sit close by, and nuzzle them gently.”

We need this reminder because sometimes we forget to appreciate the moment. I sighed as I read it. She’s right, and I am very guilty of forgetting lately. Recently, when I’m having a bad moment, Annie will nuzzle my elbow for attention. I was thinking that she wanted the attention but maybe she knows that I need the attention and is trying to tell me something. From now on … I will stop and think and try to appreciate the moment.

While walking home with Annie today, my mind was dancing about with ideas. I was thinking about sound. Hearing is a sense that comes from both sides and the brain processes the information so that one can tell the direction of a sound without thinking about why you know the direction. This must be because the brain integrates the auditory information somewhere. Your hearing seems fine so I wonder if there is some way that hearing can be used to compensate for your left neglect and visual field cut.

On a CBC radio show, I remember hearing about a woman who had a chemical accident that cause blindness. Since then, she has developed a special ‘seeing’ device that allowed her to ‘see’ with her ears. Her glasses have a camera, which changes a visual image into sounds that she trained her brain to ‘see’. This seems miraculous to me. I wonder if there is an application for your deficits.

As I climb the hill towards home, I start to design, in my mind, a hoist to go in our bathroom so that you can into and out of the bath tub safely. As my mind circles about the obstacles in our bathroom to building such a devise, I stumble on a memory from last year. The air is warm and the ground is soft and the light of the day all transported me to a time when we were hiking in the woods on a trial in Earltown with you almost a year ago. Oh, How things can change in a year.

Just as I was starting to feel a wave of grief come on, a car pulls up beside me. It was Karen who looks after the children on Fridays. She offers me wise words of hope and support. She said exactly what I needed to hear right now. “When Chris comes home, you will find the rhythm for your family again, meanwhile it’s one day at a time and have faith.”

It feels so good to hear that message from someone else. My own voice of hope gets hoarse after a while and I can’t hear it so well. It helps when other voices join in and increase the volume of the message.

She closes her words of wisdom with a quote from ‘Kung Fu Panda’. “Yesterday is history and tomorrow is a mystery, today is a gift … that’s why they call it a present.”
Only another parent of young children can appreciate the wisdom and significance of quoting from a children’s cartoon.

It was a good day for you. You had that chance to smoke … but you didn’t.
“One day at a time.” You say echoing Harold’s wise words about not smoking from the weekend.

This is the last week for the PT student who is visiting from Sweden. You think the world of her. She is going to be a great PT. She seems to intuitively know how to move with the patient to get the best response. As I have watched the PT and her students work with you I can appreciate a intuitive nature that develops where the PT is so connected with your body mechanics that they know what you are doing right or wrong long before the patient does. It is a skill that I suspect takes a long time to develop.

Each patient would be like a new dance partner. The PT has to learn the subtle body mechanics of each patient and adapt their movements wit the patient. I got a small taste of this past weekend. It is mentally exhausting to constantly be aware of another human’s body. I found myself hushing the children when I had you walking or doing stair. I don’t dare multitask while walking with you.

We talk for quite a while on the phone tonight. You sound good and strong and you sound hopeful about the future … whatever it will look like. You said “I treasure the now … I want to live in the now and not hide my feelings.”

This is a good example of the ‘new you’. There are parts of the old you that I haven’t found since your stroke. The parts that make up the new you have always been there but they are magnified. It will take a little time to get used to the more open, honest, philosophic and sincere version of you. But that’s OK … we have the rest of our lives and I going to love to do it.

We are so much closer then we ever have been. It is mostly because you are talking and sharing and being open about all your feelings and thoughts. It’s a double-edged sword. The sharing can be a little over whelming sometimes but on the other hand, I feel very connected to you because of the sharing. I think that this new level of communication will be the basis of our new family rhythm.

Sunday March 21 – Walking in Church

We all slept in! A sleepy Sunday! We planned on going to church this morning and as usual, you want to be there early. You want to get there an hour early! So I started the day rushing from task to task. I get you set up to shave yourself while I have a shower. When I get finished you had done a beautiful job with the week’s growth of hair on the right side of your face but the left was almost untouched. I attempted to shave the left side. We were down to one blade that didn’t appreciate the job I was asking it to do … it tried to plow through the week’s worth of hair. Needless, to say, the left side was looking a little raw, by the time I got finished with it.

I think that shaving could become a combined effort between you and Quinn. Some day he will have to shave. He is very fortunate to have a practice face that doesn’t have great sensation to hone his skills on. When I share this thought with you, you weren’t too thrilled.

As you finish off your bathroom stuff, I play a CD on the computer that Anne sent you. She and a group of musician friends, who she plays with recorded some songs. She thought that one song in particular would touch your heart. She was right. ‘Carrin’ On’ – brings you to tears. I print the words and you weep and ask me to play it again and again.

We get to the church with 15 minutes to spare. I am honestly impressed. You think we could do better next time. You brought along with you Anne’s CD to be played in the church some day during an offering. You want to share the gift of music with other people who you love.

Jay’s sermon today was ‘What is Your Name?’. It was a very appropriate sermon to hear. He discussed how we are named by our world around us. Sometimes we let these names define us rather then allowing us to define a name. We don’t name ourselves. You have been struggling with your identity and how you see yourself and others see you. Your most recent struggle is ‘Stroke survivor’ rather then ‘Stroke victim’.

After the church service you reconnect with many people from the church. You feel good. This is your home. You exchange greetings, well wishes and hugs. You want to show off what you can do. So, for a few of the congregation who lingered behind, you show them what you have learned at the NSRC. The PT’s words – “no recreational walking” - did pass through my mind but I figured what’s the harm, let’s try. You did. You walked a good 15 feet before seating down. They were all impressed. After you showed off you new skills, I circulated the pledge sheet for the March of Dimes. You got your first sponsors.

Later in the afternoon, you start to consider what you would want for a tattoo. “What about ‘The path of least resistance’ tattooed on my left arm?” You ask me. “You gotta do better then that!” I reply. I can think of so many great inspiring and thought provoking tattoos, but I don’t want my thoughts invade your thoughts. This is your idea, You need to run with it ... after all it is your left arm.

Chris G came to visit in the afternoon. The two of you talked about what you can do after Chris retires in June. He is interested in model planes. This is a passion you had many years ago. You even have a half-finished plane in the basement of the church. You think that your plane building and flying days are over – you need two hands to flight a model plane. You are more interested in model trains.

I think the two of you could pass many happy hours talking about planes and trains. Sounds like the two of you could have a happy marriage.

On the drive back to Hailfax, You are distressed. You want to be home for the children. I think this is an excellent example of your parenting instinct coming back. You say that if you aren’t home Quinn will miss bedtime stories. You won’t be here tonight but you will be here for the rest of Quinn’s childhood. To be present for emotional support and mental stimulation for the children is the real part of parenting. This was wonderful sight to see you reading to Quinn last night.

On the drive to the NSRC, we cruise by the new building across the road. It is going to be a research facility with the Brain Repair Center there. This is Dr Mendez’s baby. It is well placed. From your room window, you can look out at the building and watch the progress. I have noticed a lot of progress in just the last six weeks. When you first came to the NSRC, I thought it was going to be a parking garage because it had that open concrete look. Now windows have filled in the spaces and it is taking on the appearance of a high tech building. This building represents my future hope for your recovery. Brain Repair with stem cells.

On the drive home, I reflect on your first weekend home. You played all the important roles this weekend. Husband, father, friend to Donald, Marsha and Chris and to your extended family at the church. I think that this time spent with family and friends must have a healing effect.

There are still many more things to do to get the house ready for you. The overall disorganization at home is very noticeable this weekend. I finally had time to appreciate the clutter. I missed the annual fall purge and the pre-Christmas kid stuff purge and now it’s almost spring and time to purge again.

Spending more time at home enables me to see this clutter and it is starting to get to me. I want to get a handle on it before you get home. As things are right now, it is not wheelchair friendly or a safe walking environment. I know that Tara will give me resistance … she is such a collector. An organized collector. I will have to find the right motivation for her to purge. Thankfully, Quinn will be a little easier to convince. He would do anything to get you home. I start the process by making a purging plan.

Monday, March 29, 2010

Saturday March 20 – A No Cry Day

Quinn wakes up with Daddy! He is all smiles. Tara gets up and slips into the big bed. The four of us in the big bed cuddled up it was so nice. I didn’t want it to end. When the clocked ticked past 8am, Tara jumps up and asks if she can call her best friend. As she talks to Madeline, her speech gets faster and faster. She is so excited at the prospect of Madeline getting to see you when she visits later in the day.

After breakfast, you note, “No crying today by 10 am”. While you visit Donald at Cedarstone, I get groceries. You want to make it a routine of going to visit Donald once a week if possible. I think in many ways, the two of you have a lot in common with only 44 years separating you.

The children have their friends over to visit, It is almost like a regular Saturday afternoon full of domestic life. Cooking and planning meals, cleaning the house and settling disputes between children and tidying up after them … It felt great to be home.

Stairs weren’t a big deal really. They are nerve racking to do and they require 100% of our attention. No multitasking while doing the stairs. I won’t even let the children talk to us while you are on the stairs. One mis-step can lead very easily to a fall. A fall can seriously set you back in your recovery. It is difficult for me, a multitasking addict, to stay focused on one thing but it is important.

I have to be your voice of reason and safety. You are usually the cautious one and I’m the risk taker in the family. Being the cautious one is a new role for me and I find it easy to fall into “maybe we can do it” attitude. It’s dangerous thinking. I keep reminding myself what the PT said on Friday. Walk and stairs only when necessary not for recreational demos.

Together we explore your backpack. This is the backpack that you had in the car when you had your stroke. It had the cigarettes in it still. I had thrown in your GPS watch and your rings as well. I put the cigarettes in the garbage. You want to get more but I can’t let you slip now.

It’s a beautiful day and we decide to go outside for a walk about the neighborhood. We meander our way down the street and arrive at Marsha’s house. You give Marsha and her husband, Doug, a complete comedy routine of your experiences in the rehab. The lines were funny and the timing was good. You still have a comedian’s delivery. The stroke didn’t take that away from you.

Later in the day, Harold, our neighbor, visits. Being a fellow stroke survivor and ex-smoker, he can empathize with you. The two of you talk about smoking and the effort it takes to quit. Harold has been smoke free for a while now but he says that it’s really just a matter of taking it a day at a time.

Harold is very involved with the local Stroke club. It is for stroke survivors and helps them overcome their deficits and thrive despite them. He is going in the March of Dimes pledge – Walk and Roll A Thon that takes place April 10 at the Truro Mall. He brought some pledge sheets for you to get sponsors. You will be home that weekend and you want to be involved.

The two of you talk about how a stroke affects people. Harold has a seemingly ‘invisible disability” from the stroke. Anyone looking at him wouldn’t know he had a stroke but the he still has effects of the stroke, which have lingered. The recovery, for him, continues every day. He is an inspiration to you.

By 10 pm you still haven’t cried today.

Quinn happily sleeps with us again

Note to readers: The Walk Roll A Thon in at the Truro Mall from 9 to 11:30 am. Come and see stroke survivors make a difference in their lives and the lives of others. Chris will be there Walking and Rolling.

Friday March 19 - Small Things are the Best Things

Today was the day that I went to walking school. The PT said that she would show me how to assist you walking and doing stairs. If all goes well, then you get rewarded a cane which means we can go home of the weekend!

I tell you, at breakfast, that I’m a little worried about helping you. Quinn overhears the conversation and pipes up in a little but authoritative voice, “You will help Daddy, one step at a time … just one step at a time.”

At the PT’s walking school, she demonstrates with me walking her as she mimics your gait. She has obviously done this before. A third person watching us from a distance would wonder about our crazy antics. It might have looked like we were applying for a position in the Monty Python’s Flying Circus Ministry of Crazy Walks.

She emphasizes that the walking is strictly for getting from one place to another. She looks at you when she says, “It is not for showing off yet”. The biggest challenge to assisting you walk is to relax and act as a safety not a helper. As you walk, I hold on to your arm sling in the back. Poised and ready to steady you if needed. The other challenge is to concentrate. You don’t track your left foot well. If you don’t effectively move your left foot and not notice, then when you take a step with your right – you lose balance or as the PT says, “You don’t have a leg to stand on.”

Occasionally, as you get stuck with the left foot not moving on cue, I learn to lean you slightly to the right to allow you to take weight off the left so you can move it forward. The timing of this cueing is key to a ‘smooth’ gait. It requires a lot of concentration from both of us. We can not walk and talk at the same time at this stage. I hope that at some point the cueing will be second nature to both of us. But, like dancing, this will take time.

Your PT is a natural teacher. She takes great pleasure at giving Tara and Quinn the tour of the physio pool. She knew that she wanted to be a physiotherapist since she was 15 years old. Now, many years later, she is as enthusiastic as she was when she started her career and it shows and is contagious.

At the end of the PT session you get handed the ‘trophy’ of a quad cane to take home for the weekend! Today you will get to walk through the door of our home. The first time in almost seven months.

Good session with your psychologist today. She gave you some reading material to help your identify with the feelings better. Grey Glasses and belief systems that affect your mood. She tailored the handout to your situation. I can see how actively thinking about this thinking can help you past this stage.

You feel undeserving and inadequate. You are the pessimist by nature about most things in life but you remain are optimistic about running. You talk about running again. When I ask why you seem to have so much optimism for running, you said that you feel that running was the one thing that you could have control of. “I love that line from the song – I don’t go very fast but I go pretty far.”

The chaplain came to see you today. She is a very good listener. Between her listening skills and the psychologist reasoning skills, I think that we are off to a good start for the weekend.

On the drive home, you spot smokers and runners. Thankfully, you saw more runners then smokers. I wonder if this is going to be your new pass time.

On the drive home we talk about where you will sleep. The hospital bed on the main floor or our bed. “In our bed!” Quinn says. Of course he meant yours and my bed, but he has slept on your side of the bed for so long that he thinks of it as his bed too.

This week has been so good for the family. It almost had a normal feel to it. In the morning you would go off to ‘work’ and we would come visit you at work and after go off and do things in Halifax. By today, we had developed a routine and a rhythm. It felt good.

Juanita and I stay up late to put up handrails on the stairs so you can get to the bedroom. After an emergency trip to the hardware store and a trip to Wayne’s workbench for tools, we get finished by 10 pm.

I nervously assist you going down the stairs with Juanita ahead to break your fall. You didn’t fall! So far so good. Once the handrails are complete, We go up the stairs. Still no falls! My confidence is growing.

Quinn is already in our bed. We let Quinn continue his sleep with us in ‘our’ bed. I smile at the thought of Quinn waking up in the morning with him sandwiched between us. I know he will be happy. It is funny how the small things are the best things.

Thursday March 18 – Dancing Together

We danced in the bathroom today! Your bathroom duties, this morning, required my help as usual. The difference was that I was in bare feet. You had your shoes on to give you better traction. It reminded me of the ballroom dancing lessons we took when we were pregnant with Tara. You picked up on the different footwork patterns pretty quickly. I didn’t and as a result there were many swished toes ... mostly yours. Now, you are getting even and I have to be conscious of where your feet are so I can get my feet out of the way. You have to maneuver your feet about when pivoting to get onto the toilet. This is a special challenge in the apartment’s bathroom with limited space.

Your PT danced with you today too. You started with lots of walking and sitting from different positions. I had to take the children outside for a few minutes to get some fresh air and burn off some steam. When we came back in the PT gym, you and your PT were shuffling about in a circle. Clockwise then counter-clockwise. The two of you looked like you were dancing.

She wanted to demonstrate how it is easier for you the circle counter-clockwise and lead with right foot. This is important to know because that means every time you sit down, you have to think about your approach. At this point not only do you have to think and plan your ‘descent into the chair but you have to communicate or ‘file the flight plan’ with whoever is helping you to land in a chair or bed. This small mindless act that we do normally all the time with little thought, becomes a major production and requires the coordination of a well executed football play.

At lunch you OD’ed on your pills. It was an error. I had all your medications for the week. Five pill at 8 am, two at noon and 5 pm and 5 more plus a liquid at 10 pm. To simplify the week I put your noon pills for the week in a pill vial and kept them in my purse so that we would have them wherever we went. The plan sounded good at the time.

As the children and I were getting ready to leave to go to Tara’s hair appointment, I said as I went to the washroom, “Don’t let me forget to give you your noon medications before we leave.” And I placed the pill vial on the table. I was gone of less then 3 minutes and when I get back to your room, I grab the pill vial to give the pills – they are all gone… all four noon doses gone!

We talked to your nurses and they check with your doctor and the consensus is that you would be tired and you should just rest the rest of the day and skip your therapy sessions. So I leave you to rest and whisk Tara and Quinn away to meet Juanita at the hair salon to get Tara’s hair highlighted and Quinn’s mop of hair tamed.

Tara didn’t want me to see her getting done until it was finished so I hung out with Quinn and busied myself next door at the luggage shop. That’s where I found a one strapper back pack for you with spot for cell phone for you. I think that will make getting about, both in and out of the house a little easier.

While the children were with Juanita, I went back to the NSRC for an appointment with the family psychologist. He planted a seed in my mind. Well meaning friends have planted the same crop in my head too. I don’t know if they will spout. The seed is the concept of ‘me time’. It sounds good in theory and I would be planting the same seed in my friend’s head if they were in a tough situation with family illness, but I can’t see how it will happen. Right now, I am content to call a solid eight hours a night of sleep - Me Time.

There was no OT today but tomorrow, your OT are going to videotape you so you can see how you move. I anticipate that this is going to be an emotional moment. Left neglect, hemiplegia, hemianopsia … the perfect storm of sensory loss. The net result is there is no left.

Thursday, March 25, 2010

Wednesday March 17 - A Green Day

March 17th has been a special day for us. With both of your parent’s families come from Ireland. You were brought up being green. I have no green Irish blood in me but the idea of leprechauns and other Irish magic along with an interesting history has engaged my imagination.

Since the children have been in our lives, we try to do something special on Saint Patrick’s Day each year. A few years ago, you made Irish lamb stew. Last year, I tried my hand at an Irish dinner, which included green milk for the children. The green milk seemed like a good idea at the time but apparently, it didn’t taste so good.

This year we all wore green. Quinn had given Tara a green top for her birthday and I had packed a green top to wear today. You and Quinn didn’t have any green clothes so yesterday we made a trip to the local Zellars and bought green t–shirts for you and Quinn. Quinn quite likes the idea that you are matching today.

We make a minor stir wherever we go because we are all in green. We get lots of comments about the green theme. Oh well, the children like it.

Your PT has plans for you. She wants you for a few more weeks … possibly four. She wants you to manage al sorts of transfers so that you can move safely from spot to spot with little risk of injury. She wants you to learn how the manage, not only stairs where there is a hand rail, but also curbs and other ‘everyday’ minor obstacles.

You have the advantage of being very athletic before your stroke. You used to have great balance. Your balancing skill is somewhat affected but some talent is still there and that has made the transition to stairs and the cane go fairly smoothly. You get a little excited at hearing this. “What about running?” You ask. I have to rein you in and remind you, “You have to walk before you run.”

After PT, the children and I leave you to your lunch and head off to the Maritime Museum of the Atlantic. We check out lighthouses, learn a little Morse code and see model boat builders at work. It’s a whirlwind visit because we have to be back at the NSRC for the psychologist appointment.

In the afternoon, the children hang out with a recreational therapist on the fourth floor while we meet with the couple and family psychologist again. It mostly a ‘checking in’ session. A lot less tears for both of us then the first meeting with him. He notes that we seem better today then before. I have to agree. I don’t want to discount what the psychologist did for us but I think that hanging out like a real family for the last five days was very therapeutic for us.

Dr Mountain says that it’s official – you are staying for another four more weeks the new tentative discharge date is April 22. This is because they feel that they can do a bit more with you. Independent transfers is the goal. This will enable you the actually go to the washroom by yourself. Something that most 45 year olds take for granted. This skill will be quite liberating for you and possibly the start of things to come.

After dinner, you call your mother to wish her a good green St Paddy’s Day. When I talk to her, she sounds tired. Dee Dee has been battling health issues ever since your journey began. It’s a quick call because we called with the cell phone. The children didn’t get to talk to her for long. They both miss their grandmother very much.

Quinn is in tears again at the dinner table. After some coaxing, he said, “I miss Dee Dee”. He said that he was embarrassed to say that was why. You share your feelings about embarrassment with Quinn. You have had a lot of embarrassing things happen to you over the past few months but you have found that no one can make you embarrassed. You wonder aloud if the children are embarrassed to be with you. Quinn and Tara protest loudly to this idea.

They have been counting down the days until they could come to Halifax and visit you. You have no idea how much they miss you. When we are at home and you are in Halifax, they talk about missing you all the time.

Wednesday, March 24, 2010

Tuesday March 16 – What will be My Meaningful Job?

Today your PT is back. She meets the children. She is a bit of a kid herself. She immediately notices the devil sticks that Quinn brought to the gym with him. She is drawn to the devil sticks right away. She seizes the opportunity to do a bit of twirling with the sticks.

The children and I get to see you walk, climb stairs and strengthen your legs on the kinetron – a sort of sitting upright stair master. You also practice several transfers from various positions.

Walking requires a lot of concentration. You and your PT have to constantly be aware of where your left foot is. If you try to kick the left foot forward and it doesn’t go and you don’t notice it, you will fall when you try to take the next step with your right foot. As the PT says, “you have to watch carefully because when this happens you don’t have a leg to stand on.”

Lately you have been thinking that I should take a vacation. “Go somewhere by yourself or with the children but leave me here. You should just relax and not have to look after me.” Now you want your PT and I to go on a cruise together! “I’m not really a cruise-type tourist. I would rather go hiking.” Your PT agrees with me.

Last summer, we went for a hike up at Earltown. It was a wonderful day and the air was clear and fresh. The forest floor was covered with flowers. We had a good vigorous walk in the woods. How I long to know that hiking with you and the children is something that we can do together again.

You have different dreams for the future. “Someday I will qualify again for Boston. Then I will be running for all the right reasons.” This sounds a little like another attempt at bargaining but perhaps you are just stating the future as you see it.

While you are with the OT practicing transfers from chair to chair like a rather insane game of musical chairs, we drove out to Dingle Tower. The tower was closed so we went for a walk along the beach. It always amazes me that when you put a child on a beach, even in winter, they will find fun and joy somewhere in the sand. Today was no exception. Tara and Quinn skipped rocks, looked for sea glass and shell treasures and drew in the sand. Within thirty minutes Tara’s pockets were bulging with shells.

As we started back to the NSRC, Tara states that she loves the ocean. “I am going to live by the sea when I grow up.” She said. “Don’t worry, you and Daddy can come visit.

After dinner tonight, we play a game. Jellybean poker. It’s fun playing together. It is really a math game that also teaches the talent of bluffing. You learn a lot about people when you play poker with them.

Quinn is a risk taker of the family. “After all, they are just jellybeans.” He says with a shrug. He is not much of a bluffer but then it’s hard to bluff when you get good cards all the time like he seems to.

Tara is much more reserved with her betting. Not so willing to take a chance on things. In no time she had her jellybeans all organized by colour in the order of the rainbow. Any bets that she did make were carefully colour coordinated.

You were the first one to loose all your jellybeans. I fell shortly after. Tara and Quinn loaned us jellybeans to stay in the game. Quinn cleaned up then proceeded to share his haul of jellybeans with Tara.

I brought the photo album for 2009 with us this week. I thought you might want to see what you had missed. Most of the pictures, taken after your stroke, were of you and the children in various hospital beds. The pictures show you at different stages of your recovery. Pictures showing you in all levels of consciousness. The picture that really caught your eye was the one I took a day after you surgery in the ICU.

Quinn wasn’t sure if he wanted to see you or not. He was worried that you might look scary. I took a picture of you from the non-surgical side so Quinn could see you before actually coming to your bed. You hardly recognized yourself in the picture. I think this is the first time that you really tried to imagine what our lives were like and how frightened we were.

Negative thoughts still circle around you today. You have been searching for something to do that is meaningful when you get home. You ask about working at the animal hospital.

We have worked together before in an animal hospital. That’s how we meet. But, working with animals is a fairly physical job and I don’t see what you would be able to do that is safe. I didn’t have to tell you that … Thank God. You came to that conclusion by yourself. The thought that you couldn’t even do something at the animal hospital made you weep.

I remind you that the most important work that you need to do is to work on your recovery. You still have some very important jobs that only you can do. Be a father, husband, son, brother and friend. This is your meaningful work now.

Monday March 15 - Stroke Surviver to Stroke Thriver

Today your PT is off and the Swedish student is working with you. She shows Tara and Quinn some of your new tricks. Walking between the parallel bars and walking with a cane between the bars. The children were very impressed and cheered you on with every step. They both felt it was worth the wait to see your performance.

After lunch we all go to see your OT. The wheelchair that he ordered has come and we check it out to see if any changes need to be made. It is a basic chair with no real frills. You suggested that a coffee holder would be a good accessory.

The chair is good fit but some adjustments need to be made and a left arm support must be added. The left arm support is essential for the safety of your arm. Without it your arm would have to be in a sling attached to your chest all the time. The sling is good for transfers but not for the rest on your life. You need to have your arm resting in different positions to preserve the joint integrity as much as possible.

You get into the chair. The chair is new with beautifully smooth wheel bearings. It is noticeably different from the ‘clunker’ that the NSRC has loaned you. “How much does this thing cost?” you ask. The wheelchair supply guy hedges a bit and says it’s about $2500. You ask in your driest voice “If it’s worth that much maybe we cut it up and send it in for the ‘Dollars for Gold’ deal that is advertised on TV?” Then you add, “Isn’t there a program that you get a free wheel chair of every organ that you donate?”

Thankfully, we have insurance and hopefully the wheelchair will be covered. I have found the insurance company a little frustrating so far. They have been very vague about what they will cover and very specific about what they won’t cover. I am still waiting for information about the coverage that you have.

The OT makes a good point. We have to imagine how the chair is going to be used … in the house as well as outside. The use can dictate the quality of the chair. For now we will keep the NSRC chair until the new chair is complete.

You tell the OT that you would gladly give up the use of your left hand if you could have your left leg back again. “That is the bargaining stage of grief.” He says. “Sadly, these are choices that you can’t make.”
After the OT session you and I were to meet with the couples psychologist while Tara and Quinn hang out on the recreational therapy floor. But the plan has to shift quickly. Quinn doesn’t want to be left alone on a different part of the hospital with strangers. He wants to see the ‘feelings doctor’ too.

So, we all pile into his office. We talked about our family, the struggles and challenges that we have had over the last months. I think the children got something out of the session. Tara surprised the psychologist with her insights. He said that she was “Old beyond her years.” She smiled when she heard him say this. She already thinks that she is old beyond her years. I know that she will remind me of this from time to time.

After your therapy sessions, we head out to the grocery store. We were a bit of a spectacle. Not that we were unusual site at the grocery store. In fact we weren’t. I saw at least two other people in wheelchairs. We were the worst wheelchair drivers. Narrow grocery store aisles with aisle displays and wheelchairs don’t mix well with novice wheel chair drivers. I think I will grocery shop solo for a while before I bring ‘helpers’.

The other lesson we learned was that it’s quite hard to fit four people, a wheelchair and a week’s worth of groceries into a Honda Fit. I don’t know how long we will keep the Fit. Once you get home, we will look at other cars that have a little more room in the back and legroom in the front. The Fit is very quite confined in the legroom department. I feel like I’m stuffing you into the car when we load in. Sometimes your left leg doesn’t want to flex because of the clonus or spasms that it has from time to time. This fact makes it very hard to get you into the car.

It appears that your new passion and coping addiction is coffee. To satisfy your craving for Tim Horton’s coffee, I got you Tim Hortons ground coffee … actually decaffeinated ground coffee. There is a coffee brewer at Lenore’s that we can use. One of my goals this week is to see if I can get you onto decaff coffee with a lot less cream in it. I knowledge that you will need something to bridge your addiction gap so that you can cope … I just want to make it as healthy an addiction as possible.

Tonight, I read an article about stroke survivors. It is amazing how language can change your mind set. In the early days of your recovery, I thought of you as a stroke victim. A victim of a random act of God that could not be explained. When one suffers the outcome of a random event, you can not think beyond being a victim.

A few weeks later, when it was obvious that you were making a recovery and you were loosing wires and tubes, I started thinking of you as a stroke survivor. The article I read tonight suggested that the ultimate level of recovery is to be a stroke thriver.

My crystal ball is staring to work again. I am starting to see you as a stroke thriver.

Tuesday, March 23, 2010

Sunday March 14 – Your Waves Against My Shore

Sunday started off with the topic of smoking … again. It continued off and on all morning. Finally, when we were with the children waiting for an elevator, I said in a worn-out sarcastic voice while looking at the children, “I will give you a cigarette to smoke after you watched both our children smoke one each first.”

The children quickly jump on this cue. Like most siblings, they are very good at talking at the same time. It is usually very annoying but this moment was special. “Yeah Daddy that’s a good idea because you’ll never get me to smoke!” Their opinions chimed in perfect unison.

That ended this discussion ... for a while.

This weekend you seem to be obsessing on the smoking theme and the ‘what if’s’. This is different from the ‘I don’t deserve to live’ and the ‘I don’t want to be a burden’ obsessions you have had in the past.

Today, you play the ‘what if’ game’ to extremes and it consumes a lot of your emotional energy. The talk is different but it is a welcome change. Oddly, it helped me realize that these negative thoughts are of a different flavour and that your negative thoughts are temporary … they flow into your mind and eventually they flow out … like a wave.

A wave, coming ashore after a storm, has lots of strength and momentum. As it rolls up the shore it loses sped and strength. Finally it recedes only to be replaced by another wave. In your case the waves are worries, dark thoughts and fears. Your waves can come ashore a gentle sandy beach and leave safe water to navigate or it can come to a rocky cliff and crush against the rocks creating a dangerous situation. The destruction of the wave depends on the shoreline.

You are the ocean after a storm and I am the land. Your waves erode my shoreline. I can let you erode my shoreline gently or dangerously. I can not let your cycles of dark thoughts get into my head or I can’t be strong for you and the children. This epiphany has recharged my determination to help you through this. Sometimes, living so close to your dark thoughts swallows me up but with this mindset immunizes me against the contiguousness of your talk.

I have to remember that this is part of your recovery and if I can just ride the waves out – your storm will pass and your thinking will evolve.

Before we left on Friday, I checked the email. A email from Lynn was waiting. She had taken up running recently and the Cobequid 10 km was one of the first races she did. Now she is in a running group that is organized with instructors. This week she has ‘homework’. She has to think about something that inspires her while doing hill training. She wrote about you and your struggle to survive this stroke. I read to you her email and you are touched. You weep.

You want to walk the some of the Cobequid 10 k this year or maybe next year. You may be able to walk some or all of it…after that … who knows. “I had to be patient throughout this ordeal… I’m not terribly good at it.” You certainly have had lots of practice with patience and a lot more to do in the future. The patience and your pre-existing determination will be an asset later.

For our entertainment this afternoon, Quinn does a juggling show with balls and devil sticks while Tara plays ‘The Entertainer’ on the organ. Then Tara performs a dance for us. At the end of their shows, you picked up a devil stick and started to flip it end over end. I told you about the day when you did the same trick while you were at the QE2. You were still rather dazed, at the time, when you stared to flip the stick. End for end. Quinn and Tara were delighted with this display of talent. You don’t remember this at all. This was weeks before you could talk. This was a very pivotal moment for them. This was the moment that they knew that their Daddy was still inside.

Today, you decided to one-up yourself. You got Quinn to give you two of his juggling balls and proceeded to juggle the two balls with your right hand while the three of us cheer you on.

The children and I play a game of ‘find Daddy’s blind spot’. We started with you looking straight ahead at Quinn who was directly in front of you. Then Tara would walk along your side to the left and to the right from behind you.

There was a considerable difference. There is definitely at least 30 degrees of your field of vision is lost. Now that the children know where your blind spot is, there could be some sneakiness going on. Oddly, that thought comforts me, because I am confident that if the children try to take advantage of your blind spot, they only be able to do it once because after that you will be highly motivated in the future to compensate for it. I think if it works … we should call it the ‘Sneaky Kid Therapy’.

Tonight you start again on the cigarette wave again. You want me to get you some. I decide to change my tactic so I share with you my theory of why you chose to tell me that you smoked.

It is a simple theory. You told me because you felt you might need my help. You felt that there might be a day that you would have a hard time resisting the urge. You told me because, subconsciously, you wanted my help during these times. You wanted me to be your keeper and help your resist then urge. You keep asking me for cigarettes because you don’t want to fail. You could go out and find a way to sneak a cigarette behind my back, but you haven’t. You haven’t because you have the will power most of the time and when you don’t … I do. We are a team.

The ‘Good night’ cuddle with the children almost had a Christmas Eve feel to it. “Tomorrow, we will get to see Daddy walk and do stairs for real!” They had seen a video that I made but it doesn’t seem as real as seeing you in person. Quinn and Tara are both all smiles with the thought of tomorrow as they drift off to sleep.

Sunday, March 21, 2010

Saturday March 13 - Challenges

Today was a day that I had been looking forward to all week. I had planned for it and I was right on schedule. That was when the detours started.

Jeff came today to install the banister. This was all part of the plan and things were going well. Then, I thought that I would call you to tell you what time we would get to Halifax so you knew whether to eat your lunch at the hospital. Over the phone you said that you are sicker then ever with the cold. It’s a real cold and you are worried that you are going to get us all sick on the March break. Damn. I survey the children, they don’t care if they get sick. “We are coming anyway.” I said to you.

In the back of my mind, I’m worried that the cold is an excuse. You are pushing us away because of the conflict we are having over smoking.

For Tara’s birthday, Juanita gave her an appointment at the hair salon to get highlights in her hair. Tara was quite excited about this new level of personal adornment. She was going to be with Juanita for the morning and the Juanita and Farley and Tara were going to meet us in Halifax while Quinn and Maddie and I travel ahead.

It didn’t Tara long to come back home because the hair stylist found nits in her hair! Oh gosh the lice thing again! Actually I think my language was worse then that.

I dig out the delousing gear again and I went through her hair, followed by Juanita. Only 6 nits and no adults. All the nits are 4 to 6 inches from the scalp. I am really sure that these are old nits from last fall … not new ones. Tara isn’t upset about the lice suspicion. She is just disappointed that her hair can’t be done. The hair salon has a policy about finding lice … no services rendered with lice. I am upset for Tara, but I force myself to understand the policy.

The real loss is the extra two hours out of a precious Saturday to sort all this out.

Thank God, it’s a beautiful day and we have the whole week with you. We will make the best of it ... even with the occasional infertile old nit. To be sure that we don’t risk spreading anything, I lug to Halifax all our own bedding.

When we get to Halifax, I ask you, flat out, if you are upset with me for refusing to get you cigarettes. The Promise is still fresh in my memory. It must have been in your mind too because you said, “The promise doesn’t include killing myself with cigarettes.” Appreciating the loophole, I said that anything that is self-inflicted is included in the promise. After talking with the children, you consent to coming to Lenore’s.

You read a chapter in your new running book about a long distance runner! Reading is a challenge for you with the left neglect. Finding the left margin is a challenge with every line of text. So to read a chapter … is a big accomplishment. Now you talk about the ‘ultimate walk’. “You’ll know I’ve gone because all the bananas and apples will be gone with me. I’ll put them in a back pack and I’ll call you if I make it to Baddeck.”

Today, you faced another challenge and you succeeded. You had the chance to smoke – fellow patient was going to give you a cigarette – You asked her for one and she told you she was going outside to smoke in 10 minutes. Patience has never been your strong suit … waiting the 10 minutes was all you needed to get control of yourself again. You tell the children and I about this challenge and we are very proud of you.

Yesterday, I thought about you asking for cigarettes. I had thought of bringing you just one cigarette. A single symbolic cigarette. A cigarette in a container that is covered with many layers of duct tape – the handy man’s secret weapon can also be the frustrated wife’s secret weapon. I figured it would be the “in case of emergency break glass” symbol. There would be so much duct tape on the box that by the time you got it all off … with one hand … the urge will pass.

I couldn’t do that to you. What if that allowed you to smoke again? And if it didn’t let you smoke again, then it seems like a cruel joke to put you through. I told you about my idea. You said “Oh, like the ‘In case of emergency – break the glass box’?” You smiled at the thought but you didn’t ask me to do it.

Well, it didn’t matter. It stopped that discussion dead in it’s tracks … at least I thought it did.

“I can’t say that I’m never going to smoke, I was closer other days then I was today to smoke. Today, it was almost too easy to do.”

You bought your first lottery tickets since your stroke. The thought had briefly crossed my mind that I should keep buying your tickets when you were so ill in the hospital. I had found a carefully cared for stash of tickets along with the hidden cigarettes in your car.

I knew you bought lottery tickets. After your gambling problems came to light with VLT’s we had discussed if lottery tickets were part of the same monster. We both felt that playing the lottery was just a fun diversion and you would only buy a few tickets a week. I never discouraged you from this practice. I figured everyone needs a little fun … if that was fun to you … I didn’t have to understand it. As long it was a few tickets only and for fun then I never objected.

Part of me knew that you would have been upset if your numbers ‘came up’ and your hadn’t bought the tickets. Rationally, I knew the odds of that were far slimmer then surviving a catastrophic stroke. I figured the ‘luck gods’ had already smiled on you and buying tickets was just a waste of time and energy … and money. So I didn’t.

At dinner, We are talking again about the stroke and life and smoking and suddenly Quinn makes a face and starts to cry. He doesn’t get to tug an ear lobe because we see him melt down before our eyes. I reach out and hug him. When he composes himself, he said that he worries that both you and I will die and he is scared.

I am so glad we are getting some family counseling this week.

In the evening, we watched a movie. You and I were on the sofa. I went to the kitchen for a moment to get a drink and when I got back you had slipped off the sofa. You were almost on the floor and you were unable to get yourself back up. I tried to help but I wasn’t quite strong enough. Thankfully, Lenore’s furniture includes a low footstool. It worked beautifully. I could help you get on the stool and then like you were sliding your butt up the stairs, one at a time, you managed to slide up to the sofa.

This incident illustrated to both of us how challenging living at home is going to be. I am going to have to learn some tricks to get you out of situations like this.

Saturday, March 13, 2010

Friday March 12 – Don’t Cave to the Craving

Friday March 12 – Don’t Cave to the Craving

The couple and family psychologist called to check in with me about our session on Wednesday. I felt it was a good exercise. I want anything I can get to help you through these times. When I help you, I help myself and the children. Our next session is next Monday.

The children went to visit you with Juanita while I worked today. When I picked up the children from Juanita’s, Quinn said that the visit was good and he wants to spend the whole week in Halifax. He said, with a little pride, “Daddy didn’t cry or swear at all for the whole visit!” I was a somewhat surprised because I didn’t think that you swore much. I think Quinn’s ‘swear word’ dictionary includes a lot of words that we just think of as everyday words.

Tara was less impressed with her visit. She felt that you were a hard on her and overly firm. She feels a little hurt. I think that the family counseling is coming at an important time.

Smoking was the main topic of our phone call tonight. You start the phone call by asking me if I would do you a favor. “Sure” I answer hesitatingly. “Will you bring me some cigarettes?” Oh gosh, here we go. I feel that I have to be strong for you. It’s easy for me to resist your urge to smoke but it isn’t easy to resist pleasing you.

I realize as we talk that you have a new topic to obsess on. Smoking. The chemical hold that smoking had on you must have let go a long time ago but you are in an emotional place now that you feel you need to reach for a cigarette for comfort.

I suggest my theory to you. I point out that a few months ago, you obsessed about having daily productive visits to the toilet. You had a streak that you kept careful track of. You don’t obsess about that anymore. It was a passing phase … a part of recovery I hope.

This is a phase also. I suggest it will pass. I caution you that if you cave to the obsession of smoking now, then it will never pass because there is no such thing as one cigarette. You will be a slave to nicotine and you will hate yourself for caving to the craving.

“Be Strong” I say at the end of the phone call, “And have hope.”

Tonight, March break begins. We will be in Halifax all week and we hope that you will be able to attend your sessions in the NSRC during the day and stay with us at night, This next week will be a bit of a trial run for real life at home.

With good weather scheduled all week, I am looking forward to this strange type of vacation.

Thursday March 11 - Quinn Misses You

No school today so the children hang out with Maddie and Farley while I work. It’s a busy day but the day slides by smoothly. We are starting to pack and plan for our week in Halifax. The children are very excited about this ‘vacation’ together.
At bedtime, Quinn asks about his gymnastics next week. He wanted to call his coach and tell her that he was going to see you. “I want to visit Daddy more then going to gymnastics.” He misses you so much.

Your were away from your phone at the children’s bedtime and when I tried to call you back you line was busy both times. I catch up on mail and writing and planning for the week in Hailfax and go to bed early.

Wednesday March 10 – A New Possible Discharge Date.

Today was a crazy day. I hadn’t planned on coming to Halifax until the weekend but I wanted to see your PT, social worker and another psychologist. To fit it all in was difficult but I did it. And I’m glad I made the effort because, tonight, I feel a lot better about the plan to get you home.

You have the beginnings of a sore throat today. You haven’t had a sore throat since before your stroke. You used to complain about a sore throat all the time. Of course, now I realize that you had a sore throat because of your smoking. How could I have been so naive? When you mention your sore throat, I swallow hard and ask, “Did you smoke yesterday or today?”

Your answer is ‘No”. But you are having the urge to smoke and it’s getting stronger. I tell you that you have to be strong because one cigarette leads to two, two to four and four to more ... It’s a slippery slope.

I got to see you do stairs today with your PT! She said that stairs are easier then walking. A handrail is more reliable then a cane. The system is beautifully simple. You lead with your good leg up the stairs and lead with you bad leg going down the stairs. The PT said, “ There is a ditty to remember it … The good up to heaven and the bad go … you know where.” She is far too sweet a person to feel comfortable saying the actual word, hell.

She reminded you and advised me of the ‘evil voice’ that lives in a stroke survivor’s head. The voice that will ask you to do risky things. She believes that you heard that voice on Sunday. The voice that said you wanted to practice walking. The voice that lead to the fall. I wonder if the evil voice comes from … you know where.

I ask your PT what the odds are that you will need stair lifts in the house. She thinks the odds are pretty good that you won’t! You want to know if you would be able to walk to the school to pickup the children. She thinks that the best that you can have for now is to be able to walk with assistance outdoors. “What I am hoping beyond hope is that you will be able to walk alone indoors.” She said. “My more realistic hope is that you will be able to transfer independently from the wheelchair so that once you get to a level you can transfer to another chair, toilet etc.”

At the end of the session, the PT suggests that she would like you to stay a little longer then March 25 (Your scheduled discharge date) “A couple more weeks more then the current discharge date” She says. “What!” You respond. You think that you are doing poorly and the ‘teacher’ wants to ‘keep you after school.’ The PT quickly assures you that you are doing well and that she believes there is more that can be done! The second extension is a good thing … not a bad thing. You are still not pleased. “I want to be home for the Boston Marathon, and the beginning of baseball season!”

Tonight I checked the dates. The Angels home opener is April 5, you would get home approximately April 8 and the Boston Marathon is April 19. You don’t see it but you are making progress. You will be home for many important dates.

After the physio session, we meet with the social worker (SW) and the continuing care coordinator (CCC). Together we formulate a plan for having you at home. Homecare NS will be able to provide some care as long as it is personal care or therapy driven. Yeh! It seems that the CCC and I are on the same page. At a later date we can apply for self managed care and hire a therapy assistant ourselves.

We loosely discuss schedules and responsibilities and how to hire someone. The CCC makes a good point when you lament that you don’t want to be babysat. She is not coordinating babysitting. She is coordinating therapy … ‘home based’ therapy. She is planning for your graduation from the NSRC to home therapies. That is something to rejoice over not regret. “We are trying to maximize what your independence will be.” She says.

The SW has found programs that you can be involved with like the stroke club and the VON day program. Between therapies at home and going to PT appointments. There are also other programs in Halifax that you can be involved in. We want to keep you engaged in your therapy and in life. You fear that you will end up a vegetable in front of a TV.

After lunch we meet with your new OT. Unfortunately, he is only temporary until another OT starts in two weeks. He, hopefully, has a loaner wheel chair coming soon and you will get to test ride it first to make sure that it will work for you before a wheel chair is bought.

Later in the afternoon, we meet with a couple and family psychologist. He is a soft-spoken slow talker, much like you. We both find him easy to open up to and as our discussion unfolds, several epiphanies occur to me.

The biggest epiphany is that you are scared. You aren’t really suicidal … you are just scared and that’s OK because I’m scared too. This situation is completely foreign to us and it will take time for both of us to adjust to it. Things will get better and thankfully, we have the luxury of time. Something some people don’t have as much or any hope and no time to adjust to their health problems.

My new strategy for your dark thoughts is to reframe them into words that they really mean …”I’m scared.” Maybe that action will take the discussion to a new level.

Tonight is parent - teacher night. Quinn’s teacher is pleased with his progress but sees room for more reading in his life. Pathetically sadly for me is that his French is at a level that is beyond my skills. Language has never been a strong suit with me, I have enough trouble with the English language. I had hoped that when the children started French immersion, I would be able to learn by their side. I have increased my vocabulary but I worry that I will lead him astray with his French phonetics. He needs you and your guidance in reading French.

This is a special parent role that is waiting specially for you.

Thursday, March 11, 2010

Tuesday March 9 - Hope whispers, "Try it one more time."

Jeff came by the house tonight to size up the job that we need to do on the staircase going from the dining area to the living room. It’s not a big job and it might be the only house construction job that we need to do except install more hand rails and grab bars.

I am relieved that he will be able to do it. That removes a small load. Not I have to wait to figure out the bigger part of your needs. Stair lifts and homecare. At least the stair lifts are a one-time expense but the home care will be on going and we will have to budget carefully for this.

Lately, you have been distressed at the mention of the phrase ’24 hour supervision’. You don’t want to be baby-sat and I don’t want a glorified housekeeper. We need some one or a couple of ‘some ones’ who are able to work with you while I’m at work, getting kids, groceries etc. We need them to help you with your therapies not make meals or do house cleaning. We need therapy assistants not baby sitters.

Tomorrow I hope to find out what the plan for home care is.

My call to you is brief. You were on the phone earlier and I’m on call tonight. “Who were you talking to?” I asked. “Kevin! He is going to walk with me in the Cobequid 10 km Race in August!” The thought of this choked me up, I manage to spit out the words “That would be amazing.”

I am ashamed to say that my realistic mind kicked into gear and made me say cautiously: “If not the race this year, then maybe maybe next year. We have a long way to go before you can do 10 km.” I didn’t want failure to crush you. But iI smile at the thought of this accomplishment. It would be amazing if you could walk in the same race that you ran in last year. Even if it takes you a long time. The taste of victory would be so sweet.

This is the stuff that dreams are made of.

Tomorrow, Quinn is off with his class to the Sugar Moon Farm, a maple sugar operation. He has been counting the days for a few weeks now. Tonight an email from Quinn’s teacher arrives to remind the parents of the event – as if our children . At the bottom of Quinn’ teacher’s email was the phrase:

"When the world says, "Give up," Hope whispers, "Try it one more time."
~Author Unknown

I am continuously amazed how the ‘signs’ keep coming. I seem to find little nuggets of hope in all sorts of unsuspecting places.

I have a feeling that I’m going to be using this quote a lot in the future.

Monday March 8 – Positive Affirmations

You met your new OT today. You were stuck in a ‘worst case scenario’ mood today. You asked your new OT what would happen if you didn’t improve at the NSRC. He mentioned that a long-term care facility would be an option. You could live there. I was appalled. You would never reach your full potential of recovery in a long-term care facility. It would merely be a storage place for you until you die.

I don’t know why he even humored your query. Going along with your worst-case scenario thoughts offered no benefit to you. If his intent was to scare you into getting with the program, he failed. He just handed you another way to get out of our family and not be a ‘burden’ because that is the way your brain thinks right now.

I wish that the medical community would think before they share their thoughts with you. There should be no place for negative thoughts in a rehab facility. I understand that offering practical and safety-first ideas are important but they should keep their negative opinions to themselves or at least share them with your family first before dumping them
on you.

I blame the system not the individual for this slip up. Your new OT has no first hand experience with you. If only there was better continuity of care for you. In your stay at the NSRC, you have had two rehab doctors, two different residents and now two different OTs. Only your PT remains the same from the day you got into the NSRC. All these changes in less then eight weeks stay at the NSRC. This seems overly stressful for any patient, let alone someone with a brain injury that has difficulty processing things.

Chris and Terry came to visit you today. Chris G retires from teaching next year. You suggested that you are retired too. “Retired at 45 years.” You said. “No you aren’t retired … you just changed jobs.” I replied. “This is the biggest and most important job you have ever had.”

We talk about Quinn and his passion for gymnastics. I question the sacrifices we have made for his participation. Monday and Wednesdays are nightmarish to get through, largely because Quinn is at gymnastics for three hours after school. It is really hard to get through the evening and yet, get him fed and to bed on time.

You expressed your parental opinion. As always, you look at the big picture of what gymnastics does for Quinn. I know that you are right. If it helps him find and fulfill a passion in his life then it is worth a little sacrifice. The other day, when I was a little frustrated with the crazy Wednesday evening schedule, I expressed to Quinn doubt about whether he should do gymnastics again next year. He was indignant that he should and must do gymnastics next year.

You don’t realize it, but you are still a passionate advocate for our children. That is a very important parental role.

Remembering the positive affirmations you wrote on Tara’s birthday card, I thought that you needed to hear some positive affirmations too.

“I believe in you.” I said at the end of the phone call. “You have to have Hope.”

Sunday March 7 – The Giant Crossword Puzzle.

This morning you announce that you want to tattoo the word ‘’Burden’ on your arm. How I have come to hate that word. I certainly don’t want that word to be a self-fulfilling prophecy.

I did’t want to hear that talk first thing in the morning. Last night I had promised you that I would get you some Tim’s coffee in the morning. I escape your ‘burden rant’ to fulfill my promise while Fran and the children hang out with you.

When I get back you are disappointed that I didn’t get you a 4X4 and doughnuts. We have a big conversation about impulses and control. I know you want comfort food. I do too. This is a hard time for you and comfort food looks good, but too much caffeine, cholesterol or calories and any nicotine are not doing you any favors. These were the crutches that you used to cope.

There is a fine line between being your warden and preventing you from getting these things, and being your partner and helping you heal.

Saying no to the nicotine, caffeine, cholesterol and calories means that you can say yes to you recovery. This is a hard choice but in my mind it is a no-brainer choice.

Fran gives you some emotional support while I stand my ground about the cream in the coffee. I know there so few things that you can control. I point out that you can either allow the impulses control you or you can control the impulses.

Both Fran and I can relate to your need to satisfy impulses. Food is a big comfort to us. You were my warden and Fran says her boys are hers. We all need a warden and a partner in our day to day struggles. It’s part of the human condition.

One of your presents to Tara was the video footage of you walking with a cane. I played the video for the children and Fran. The children are very impressed with the progress you have made. During March break – I hope that they can see you in action first hand.

You really wanted to practice walking, like you had been doing with your PT all week. You persuaded me to try … against my better judgement. You tried to walk with me holding your right arm. A small miscalculation in footing made you fall. Thankfully it was a soft landing and I was able to get you back into your chair easily and safely.

You were really shook up and I should have never allowed you to try something like this. I have learned the lesson. I won’t let this happen again.

The other present from you to Tara was a card with some wonderful parental positive affirmations on it. This is a card that I know that she will cherish for years.

Later in the day you have a little chat with Quinn about the gymnastics meet yesterday. You tell him how proud you were of him. You say, “You are a hard worker and you are not a quitter. When you get bigger and stronger … Look out!”

More positive affirmations for Quinn. When are you going to be able to give yourself some positive affirmations.

A young lady who you befriended at the NSRC gave you a poem. She had a stroke too. She has graduated from the inpatient to the outpatient list. The poem is entitled ‘Don’t Quit’. As you read it, I recognized it. It was the poem that someone had posted to the blog:

Our time together seems to go by far too fast and yet today,I am somewhat relieved at the end of the day that I can move onto other things. It’s as if I need a break. A break from countering your negative talk. A rest from always trying to find the bright side. At the end of the day … I still have energy but I need to redirect it.

This whole thing feels like a giant crossword puzzle. I can get ‘1 across’ easily but ‘2 across’ is harder and ‘3 across’ is just a wild guess. So to prove ‘3 across’, I have to look at the ‘down’ clues. That works of a while but then I get stuck on them.

I keep moving from the across approach to down approach. I find small solutions that seem to work or at least show me that I’m on the right track. I still don’t get to see the whole crossword puzzle solved but thank God there are different tacks that I can take at different times to help find solutions.

Wednesday, March 10, 2010

Saturday March 6 – Yes to Ribbons and No to Negative Thoughts

We have to get up early to get Quinn to the gymnastic meet. I worried, needlessly, that I wouldn’t be able to get you and the children up and dressed, fed and out of the apartment by 8 AM. But I did it! Actually it was 8:03 when we left but I still felt pretty good about it.

We get to the Alta Gym exactly on time. Quinn is whisked off for warm up exercises. I maneuver your chair through the crowd and find a spot where most of the gym is to your right, so you won’t miss much. As we get settled, you notice out of the corner of your right eye another parent. “Isn’t that Sam’s Mum?” you ask. Sam was on Quinn team last year. He and his family moved away last year. Sam’s mother was accepted to veterinary college in PEI and started to study veterinary medicine this past September.

I had met her once before, but I couldn’t remember what she looked like or her given name. I just knew her as ‘Sam’s Mum’. We spotted Sam doing warm up exercises. “She must be Sam’s Mum. Go over and say Hi.” You demand “I would but I wouldn’t be able to get the wheelchair there.” “What if she is not Sam’s Mum – I’d be embarrassed.” You refuse to let me cave and continue to coax me to go. To get you to shut up … I humor you. You were right. She is Sam’s Mum.

Sam’s Mum, Lisa, asked almost immediately about you. I said “See for yourself – we broke him out of the hospital for the weekend.” As we talk, it turns out that Lisa and I have more in common then a shared love of the veterinary medicine and sons who love gymnastics. It turns out that Lisa’s husband, Wayne, suffered from a severe brain injury five years ago. He was in a motorcycle accident. A truck ran into him. He was in very serious condition for a long time and in a coma for six weeks.

During the long days and nights while Wayne lay there fighting for his future, Lisa stood as a guardian over him. She said that she would not allow anyone near Wayne that did not have a positive attitude. She felt that this was a big reason for their survival. She spoke passionately about her experience.

Positive thoughts are instrumental to a positive outcome.

At the time Sam was five years old and Mathew was a mere four months. I can’t even imagine how strong this woman, who stood before me, must be. I am in awe. She shrugs her shoulders and says, “You just do it.”

Wayne is with his family at the meet. Lisa introduces him to you and the two of you talk. He shakes his head and says, “The wheel chair brings back memories… wheelchair to walker, walker to cane.” Now he is walking without anything. He has to be careful on stairs but he can do them. He is even thinking about going back to school and doing another degree.

You are in awe of him.

Quinn had a fun at the meet. You played the over protective parent … angry with the judges for not seeing your son’s brilliance. No ribbons this year. We decide, along with Quinn and Tara, that the best ribbons are the ones you give yourself. They are the ribbons that mean the most.

Quinn is happy with his performance … even without real ribbons … that is what counts.

The birthday money that Tara got was sitting heavy in her pocket. She needed to spend it. You and I had a good parental talk about the money. Your Mum was generous with the birthday money this year and it seems like a lot of money ... even to a ten-year-old. Every year, to date, you have taken birthday money and put it in her savings account. “This year should be different.” You say. “It’s not every year that you turn 10.” Tara is pleased with this decree.

While at the meet, I rack my brains trying to think of where Tara could spend her money in a fun, yet responsible way. Since we are in Halifax, I wanted to think of something that is not available in Truro. Then it came to me. ‘Michael’s Craft Store’. Last year while Quinn was at the same meet, we went to Michael’s to hunt for glow-in-the-dark sticks and paint for your Tidal Boar Runners team and the Cabot Trail Relay.

The four of us spent a long time roaming about the store with ideas bouncing around in our heads of the unique projects that we could do. After a few hours and a few dollars we emerged with bags of treasures.

When we got to Michael’s, Tara eyes widened … she made a ‘bead’ line for the bead section. You were tried, and wanted to wait in the car. I was disappointed, I had hoped that this trip to Michael’s might spark an interest that you would consider a hobby.

You are not ready for this idea yet.

It didn’t take long for Tara to load up on beads. I reminded her about her birthday budget. The bead fever caught on, Quinn spotted a bead kit complete with tools. He knows to the penny, how much money he has in his wallet. He checked out the price and whispered to me, “I want to buy this, I have enough money, but will you carry it?” Then in a quieter whisper he said, “I don’t want anyone to see me buy it … it’s too girly.”

At the checkout, we were one of those families that no one wants to get stuck behind in line. Tara was over budget, and because the prices weren’t on the beads they each had to be scanned again to figure out how to downsize the order. Finally, she was under budget by four dollars! She was quite proud of herself.

Fran meets us back at the apartment. She is in town for the weekend. We celebrate Tara’s birthday dinner. Beef tacos and chocolate mousse - as requested by Tara. At dinner I asked Tara what her top three memories were for the first decade of her life. She didn’t even have to think, She said without hesitation, “Trip to Boston, the moment when Mummy came to us and said that Daddy was going to die and be an organ donor and the day that Quinn was born.”

After dinner, you and I talk. You worry about dragging the children down with you emotionally. As parents, we had hoped to inspire our children but the fact is that our children are continually inspiring us.

“Past, present and future, I am scared of it all.” I tell you to stop thinking about the past and start thinking about the future, because hope only lives in the future. You have to look forward to the hope. I remind you that we have been through the whole range of emotions. We went from NO HOPE to a new level of hope. As one hope is realized, a new one hope forms and slowly enters our lives. Every realized hope is like a ribbon. A sign of accomplishment.

Your dark negative thoughts make me think about Lisa and her resolve to not let negative thoughts entry her husband’s inner sanctum. How can I protect you … from you?

You are alive! That deserves a ribbon. I know that you don’t feel hope now … but you will.

Tuesday, March 9, 2010

Friday March 5 – A Family Weekend

I talked with the family psychologist this morning. We have an appointment set for next week. You and I and the psychologist. I hope is that we can lay the groundwork to help you realize your abilities, as a parent. These abilities are still very much intact, they are just laying below the surface and you have to tap into them and believe in yourself.

This is going to be very important. Because the sense of failure that you have about parenting, affects the children too. Like any mother, I want to protect them and yet allow their influence help you heal. This will be a delicate balancing act that I don’t know if I’m capable of.

You didn’t get to see your psychologist today. It shows. You are not it a good place emotionally when we finally get to the NSRC. I thought to myself, this is going to be a long hard weekend.

Thank God we have activities planned to help keep you engaged in life rather then let you slip into despair. Between, Quinn’s gymnastic meet, Tara’s birthday and Fran visiting, I think we can keep your emotions on the positive side.