There are no bells

For most of my life I have had structure provided for me. As a student there were bells to tell us when class was over. In university, classes were scheduled for us. Then I went back to school as a teacher and for 15 years now I have been ruled by the bells, my life scheduled for me. At Parkwood I had a schedule too, every morning it was put up on my whiteboard by my nurses - I didn't always like it (I believe I complained about being "put upon") but, it was structure.

I have been home for a week now. With no structure. Meals happen, bowel and bladder routines happen, the kids get on and off the bus each day and we try to get to bed by 10pm. There have been appointments, but not every day. And all of my well intentioned lists of "this is what I will do at home" mostly remain not crossed off. Sometimes I used to feel this way on summer holidays - so much to do, but life getting in the way of getting it done.

I want to do therapy. Exercise, stretch, get outside (therapy for my mind). At Parkwood it was easy to do therapy, it was organized and planned for me, I just had to show up. It was their job to make sure it happened. Now it's my job. My job to make sure that my muscles get stretched everyday so they don't shorten. My job to work on my core muscles so they can learn to turn on automatically, not just when I say contract. It's my job to stimulate my nerves and think toes move - so that one day it might happen. It was easy to work hard at Parkwood, I had people rooting for me and looking for improvements every day. At home, it's different.

It's not that Theo is not rooting for me, because he is. It's just that we have not established our new routine. He is on his old one, kids lunches and activities, laundry, chickens, getting the farm ready for winter. And me? I am desperate for my legs to come back, but this week I didn't have any drive. Goodness me - remember those mornings from my previous life? I would get up, be at the pool for 6, swim crazy hard then go to work, coach then go home to my family. Or get up on a Sunday, in the dark, join some friends and run for hours, just for fun! What happened to that motivated Julie? I want to find her.

A lot of people are telling me I am doing great, I look good, and I need to give myself a break. It's okay to rest. In my head, somewhere, I know that is true. But I am afraid. I made great gains with my therapy at Parkwood and I don't want to lose them. I have to be my own coach now and am not sure I will listen to myself. I don't have the tools - the plinth, the lokomat, the bike, the standing frame. The doctor says all of my gains will come by 12 -18 months. Tick tock. How can I make my body work the way that it was? And, there are no bells.

Home is where

We arrived home today in the evening light, trees and sky both glowing. Kitsy cat greeted us on the driveway, but ran as soon as my wheels appeared - she does not like them. I rolled up my new ramp - it is quiet lovely - through the new doorway and into the sunroom (still quite a mess of summer things, including my mountain bike and my wetsuit, stark reminders). The kids and Kathy did not even hear us pull up, things are so quiet in the country. There was a lot of "Mom! Look at this!" that took some time to get through, like the new bathroom sink, door and light switch and the roll-under in the kitchen sink. All very welcome and surprising additions to the modified/accommodated Tiny Farm house. Thanks Casey!

The drive was long and took a toll on me, exceeding my pain threshold. So I am in bed with extra covers and a magic bag. We had to make a couple of stops, one for Starbucks and one at Shoppers. Did you know that a box of 30 pre-lubricated catheters costs $165? Funny that just today one of the nurses was telling me about how they teach people to wash and reuse their catheters for a 24 hour period. Using 5-6 catheters in a day will sure add up, and washing is not an option for me at this stage of the game. I now have my 5th UTI. Tonight's cranberry juice was heated in a mug and delivered with a small bowl of chips by my wonderful daughter. If only I could just pee like everybody else.

Our new Sleep Country bed is set up, and even though the regional manager delivered the bed frame that was missed on the original order, the two XL twins are not the same height.  I am displeased. Theo is already taller than me by a mile, and now his bed is five inches above mine! Add it to the list, right Jane? This too shall pass. We will likely spend most of our day tomorrow getting this space organized. I need to be able to reach what I need when no one else is around and park my chair so I can get out of bed. Had a great surprize of some custom made and signed slider boards from my Madill Team - they will keep me moving - thanks Mark.

The kids are the same, which is good. Still being goofy, occasional tears and needing lots of direction. But being helpful too, both of them. Home. Bathroom is clean, laundry is on, dishes on the counter, furnace is humming, extension cords stretched across the floor (safety first!) and lots of food in the fridge. I hear that the office and the family room are full of random furniture, moved for renovation purposes (I haven't looked, I'll take Theo's word for it).

Kitsy cat even came in for a head scratch. It's nice to be home.

This is where the rubber meets the road

"You must be excited to be going home" is almost the same as "are the kids excited for school to start". It really is the kind of thing that someone would say who has not really given it much thought, or they are just looking for something to say. Kids are NEVER excited to go back to school, who would be? Why would you ever want summer vacation to end? Leaving Parkwood is not the same as starting school, but the analogy of these statements fits. Think about it - this is going to be an emotional time, a new routine to establish and a major time of adjustment.

Don't get me wrong here, I am looking forward to going home and getting away from here. To the peace and quiet of our Tiny Farm, to be a family again and eat real food. But. And that is a big but, because things are not ending here, they are just beginning. This is where I will see if I can do what I have learned here at Parkwood. Sure, I have been "independent" as a patient for a while, but there was always a call-bell nearby, and a nurse or therapist to help me out. I could pull a curtain and shut out the world. This is where I will see if I am able to reduce the number of infections that I have to fight and patient enough with my bowel care to not have accidents. Can I force my body to get stronger and will I be able to wake up more motor activity? How am I going to be able to slow down my drive so I don't constantly overdo. Am I patient enough to ...survive?  Leaving Parkwood is not the end, this is just the beginning.

Some of my friends have said that they have not been able to help out as much as they would have liked to - my response is that this is a long road. We will need help. And we will be asking for it. We will need help with things that we don't even know we need help with. I can't walk, can't stand, can't move my legs except if I lift them with my arms! Everything at home and in life is going to be different. Until we get our feet on the ground (I say stupid shit like that all the time) and learn about our new life, we won't know what to ask for. Things I do know: we will need help with meals, help to get to appointments and get groceries, help with my therapy and time to just be "normal". Although I have come to realize that there is no such thing as normal anymore.

Here are some of the facts about my return home:

1. I come home to TFB on Thursday afternoon, after PT and my wheelchair fitting. Theo is picking up me and all my stuff. 
2. The house is ready enough. We will be making only minor changes until we know if we are moving or building a new house. This decision will not be made for some time (insurance and legal actions pending).
3. Our bedroom is in the dining room, with a new bed being delivered tomorrow. 
4. I hope to bring home a wheelchair that will have a front wheel that will attach to make it more "off road" capable. 
5. We have purchased some equipment, and rented other pieces of equipment until we know what works. 
6. I will not be driving with hand controls until I get assessed and trained (starts mid-November) and we buy a new car.
7. I have decided to go to Parkwood for robotic therapy (FES bike and Lokomat) one day each week for 12 weeks.
8. I have not decided where I will be doing therapy, otherwise. I need to talk to the prospects in person.
9. We likely will hire a PSW and a house cleaner. 
10. The ramp is done. 
11. We have an appointment every day the first week I am at home. 

Are we ready? No. Do we have a choice but to manage? No. Lots of people have said to me "I would never have been able to do what you are doing - you are so strong". Although I try to take it as a complement, I don't believe them. If you were in my shoes, you would do the same. You would not give up, you would not give anything but your best. So now we will be doing that as a family, giving our best. That will be hard, we will not be at our best all the time, no one is.

This is where our new life begins. I am sorry that this has happened to Theo and my two wonderful children. But we will figure things out, one hurdle at a time. This is where the rubber meets the road.

Like a rope around my chest

Eight days. And today is a beautiful day. On days like this I have been wondering,if I were teaching right now, what excuse would I have used to get my classes outside...

I have time for "recess" this morning so I am drinking coffee with my laptop out on the patio - while the kids from the daycare play on the other side of the yard. I took a chance coming down to the Tim Hortons; now that I am self-propelled I can't carry a coffee and move my chair at the same time. When I got downstairs I happened to run into Jean, my social worker, who graciously agreed to help carry my coffee outside for me. So know I have to consider whether or not to put my hat on, the plastic surgeon doc suggested I not let my scars get any sunlight - but it feels so good on my face.

So aside from a bit of pain in my back, I am feeling well today. I am hoping that the pain in my back (it's kind of new) is caused by the back rest of the chair that I am trialing right now. It is too high; it comes to the bottom of my shoulder blades. This afternoon I am supposed to be meeting with Cliff from Motion to hopefully try a different backrest. Right now I have the TiLite ZRA, which is supposed to be the best titanium chair out there. Being told to choose a wheelchair is like being give a bunch a of money and told you have three days to go and buy a car - except you have never even ridden in a car before, let alone know have to drive one. Not easy.

Doctors and spinal cord patients talk about "level of injury". My level of injury is T4. What happens for me and most other patients is like a really tight rope tied around my chest. That rope is right below my breasts, exactly on the line where my bra sits (T4). It is also in the same spot where my chest tubes were inserted during my stint at Victoria. I have never really had a good explanation about what causes the pain (that tight rope) but I imagine that all the nerves at that level just get cut off, so they kind of go haywire, sending out impulses all the time, but with no purpose. This is what they refer to as nerve pain.

So throughout most of the day I am distracted enough to be able to ignore the pain, pretend it is just the annoying elastic of my bra, but at the end of the day when the clothes come off it is there. Like a fire burning around my chest. Lately, in the past couple of weeks, and not every night, that fire seems to be entering my lungs. So I finally said something about it to my nurse a couple of nights ago. She checked my vitals, all good. She listened to my lungs, all clear, no crackles. She offered me a couple of tylenol, which I took, but it didn't really change. I went to bed and felt better in the morning. But later in the day that feeling came back. It is so hard to describe. It's not heartburn, it's not fluid in my lungs that I need to cough up. It feels like the rope is tighter, like there is pressure in my chest that gets worse with a deeper breath. Pressure increasing as the day goes on.

So when I told Lisa about it yesterday and she suggested it was anxiety, I was quiet doubtful. That is not the type of person that I am. But then I saw Stephanie who said the same thing - and explained why anxiety was a very plausible explanation. Then when I saw Kristen and she listened to my lungs and felt how well my chest expands for breath - she agreed. I started to believe, and to talk about it. Anxiety makes sense. Not that I am having a panic attack, but I have a major change coming up in eight days. There are very few things that I am able to plan for or have control over for this change - and that is not something I am used to. I am a teacher, I plan for a living. So this is going to be hard for me, not being able to be in control. But what I can control is how tight I let that rope get. Talking about it helps, so hopefully it won't get too tight today.

Brave face

This is from last week, Friday October 9th

Today I have not been able to find my brave face.  Most days I can.  I look at what needs to happen in order for me to be stronger and more independent, and I do it. I know that there are several reasons why that brave face won’t surface today.  Everyone here says that infections just make you feel like crap.  So that is reason #1.  My 3rd UTI and 4th round of antibiotics, so a UTI can only be ignored for so long and then antibiotics are a must. Prior to the invention of antibiotics, UTIs were the number one killer of para and quadriplegics. 

Not only does the infection make me feel awful all over, it also makes my leg spasms worse and my legs more uncooperative than usual.  It also makes me cry – and the tears come pretty much anytime someone talks to me.  Reason #2 might be me having to make a decision about a wheelchair and not knowing how. I am comparing apples to bananas here and I don’t  like it.  Retailer has not been helpful – hopefully that changes.

Also a big weekend for me is in store.  My whole family is coming for Thanksgiving, and it’s my birthday on Sunday.  I am afraid of not being able to keep up and do fun things which I want to do so badly.  I am also afraid of not being able to find my brave face even though I really want to, really badly.   So as I go to bed, I think that tomorrow will be better.  Those nasty bacteria will be stomped on by the antibiotics and things will seem clearer – I hope.

Being Thankful

Today is Monday, Thanksgiving Day. I have just been through my Facebook feed, seeing all the pictures my friends have posted of all the things that they are thankful for; fall colours, carved turkeys, friends and family, running on the trails of Huron County. I have also read "my wall" and have seen all of the birthday wishes...which I am thankful for. I am also thankful for all the birthday wishes sent to my phone this weekend; so nice to hear from so many friends.

This afternoon I had a nap. It was the first time that I actually slept while taking a nap. I had woo bear over my eyes, a fresh set of earplugs and had Ella close the door on her way out today. And I slept. It took a while, but I know that I slept because it was someone knocking on the door that woke me up. I am not sure how long I slept for, but it felt good. You see, I was tired and I actually listened to my mother. I wasn't sure what I was going to do this afternoon after everyone went home, she suggested I rest, and honestly there was nothing else I could have done.

I was tired because I spent the weekend with my whole family. And they treated me like a queen. It was wonderful. You see, my mom had made this plan weeks (maybe months) ago, that we should all stay at the Best Western (across the road) for the long weekend. We booked rooms for everyone, including their (one) wheelchair accessible room, and everyone came. Dave brought Karla and the girls on Friday - what a long drive. Lara and Ant, Jane and Darryn and the kids came Saturday; Sue and Jim and a well timed hockey tournament brought Cam for the weekend too. Mom and Dad stayed for the duration and Mary and Bill came back and forth for meals, to hang out and to see Cam's hockey. Theo and the kids eventually arrived Saturday afternoon and everyone stayed until today.

The BW is more-or-less like a resort, but without the swim up bar - [I still managed to find a rye and ginger to have with my dinner - thanks Ant]. Dave and Karla had a King suite with a big table that we could eat breakfast at [thanks Mom] and Ella and Maia even had their own suite for a night [thanks Jane]. The girls loved it - staying up late to watch a movie "it was a horror movie, but it wasn't scary!". My siblings all took turns carrying me into and out of the pool (not at all accessible) which was lovely and I showed off some of my swimming tricks. I think that some were surprised that I was able to keep myself afloat. The kids love the pool there, Oliver has done the waterslide 96 times and Ella is still young enough to just play. I loved watching them have fun with their aunts, uncles and cousins - and even Gramps did a lap of the pool before retiring to the hot tub.

It was a packed weekend even just with visits, but I still managed to squeeze in some shopping, of course. Dave and I went to check out possible future vehicles (Honda H-RV and Subaru Impreza) and Theo, Mary and Bill and I went to find me a Lay-Z Boy. Well, Dave did not buy me a car, but we did find a chair which I hope can be ordered this week. The choice of vehicle will be a difficult one. I have to get a new car because both of ours are standard, not an option for me anymore. I want all-wheel drive, low enough for me to independently slide into and something that I will easily be able to get my chair into. All three seem to be a tall order - but the guy from Honda is calling me this week anyway :)

Ten days, and yes, I am counting. Theo and Casey are going to be busy this week...

Just like a run around the block

Eight weeks in, today was a day of firsts in therapy.

At home last weekend I did not provide much help in the kitchen. Usually, I was politely asked to back my way out of the kitchen so they could prepare their own food, so I did and mine was brought to the table for me. Ella and I did make a nice pot of soup, but my work was at the kitchen table with the squash, far from the kitchen.

Today, I got to cook, in a real kitchen. One of the jobs of OT is to make sure that patients are prepared to go home and do the activities of daily living. So today I cooked lunch for Gary and I in the OT kitchen. It is pretty much a regular kitchen, but there are a few tools that I will need to get for home. I used a tray to carry things on my lap and there is no cupboard under the kitchen sink, just doors that open so I could roll my legs under and wash up. I made egg frittata with toast with eggs, shallots and a red pepper from our farm. Gary said he  doesn't usually make "fancy" eggs, so I taught him how to broil the top of the frittata until it was golden. It was nice, it made me feel productive. I wish I had taken a picture.

Speaking of pictures, check this out:

This is called the Lokomat - it is basically a really expensive treadmill that I am strapped to. It has a waist harness and four straps on each leg and foot. It is hard to tell from the video, it looks like I am walking on a regular treadmill,  but the lokomat is doing the walking for me. Kristen explained all the physiological benefits for using it, (like keeping my legs ready to walk, in the event that my motor control returns) but let's face it, it is just plain awesome. I am not sure if you will be able to hear the audio - but I am wanting them to crank it up so I can go for a run around the block - run Forrest, run!

Tomorrow I swim at 9 am and then Jane and I are off to Vic for my last (hopefully) follow up appointment.

The List

I like a good list, funny that I married a list guy too. But his lists are a bit different than mine. Before my accident, Theo made lists, but they were scattered around on random pieces of paper - backs of envelopes, coloured paper home from school, even on edges of the Globe & Mail Saturday crossword. Since then, however, he has changed his ways. He always had a little brown book that he wrote down special lists or funny things that the kids did or said, but that book is now his massive list book. Ever since July 29th he has been keeping notes, writing down questions and making lists. That book even contains my first "questions". I use quotations because my first questions were those that I was trying to ask after I came out of anesthetic and they were just mere scribbles on the page.

So after this crazy awful weekend of pain and disappointment I have a pretty big list of things to do and ask tomorrow. Theo forgot to bring his book with us tonight, so I will start with the things he is supposed to remember to do (hopefully I remember what they were...)

Theo:

1. measure the width of the hallway upstairs
2. send me the contact info for Adapt Able
3. talk to Casey about the ramps
4. describe to me your plans for the front wheels of a practical outdoor chair

Me:

1. Call Adapt Able and give them my side of what I need in a house - Adapt Able is the company that comes and does an assessment of the house and makes a recommendation to the insurance company about how much should be spent and what should be done to renovate the house to allow me to live to my maximum living potential.  This will include me explaining that our bedroom will need to accommodate a king size bed. Don't think that this is me being grandiose with my living. What it will actually be will be two twin beds put together. Mine will have the head/foot raise/lower option and likely a bar on the outside. Between the beds (and thus the need for twins) will be a strap that I can grab to help me roll over when dressing. I will also tell her about the difference between a roll in shower and a tub bench - the tub bench does not allow me to wash my hair/body with two hands, I always have to hold on to the bench so I can keep my body up-right. 
2. Talk to Gary about my wheelchair. I have made some inquires with people in the know, and they think my chair is too big. The tighter your chair is to your body the easier it is to maneuver. Also, we at Tiny Farm Blyth, do not live in the world of pavement and cement sidewalks. I just about died of spasms and back pain going down the driveway. This is not okay. My plan is to pick my kids up from the bus stop everyday, and I will not be putting myself through that on a daily basis. Since getting two chairs straight away is not very logical, I am going to ask for two sets of tires. I will wheel myself out to the sunroom, transfer to a chair, change the wheels to large knobby mountain bike wheels, transfer back to my chair and away I will go. That is the plan, we'll see what Gary says. 
3. Try on my new MEC mail-ordered bathing suits. My suit (10 years old) still fits, but a racer back is murder to get out of when wet, so I have some other options. I wanted to try them on this weekend, but the energy needed escaped me. 
4. Talk to my new OT about the equipment I will need at home, specifically the bed. I hope that by the time I am home the new bed will be there. We slept on the queen bed from the guest room which I think was my brother's when he was a teenager? I'll just say that it is a bit on the soft side and once I rolled into the middle there was no getting out. 
5. Call my case manager about the mini-ramps that were dropped off last week at the house. The company had come to do measurements to install ramps inside the house anywhere there was a lip or drop (like into the family room). They dropped them off. That is all - no installation, didn't check to see if they fit and in one case all they did was one side of the lip, not both. Not acceptable in my mind. 
6. My bonus list item is to figure out how to use iTunes on my Chromebook. I have some iTunes cards (from friends and even still from a staff meeting) and I have a fun new little iPod I would like to load up with music but am not sure where to start. 
7. On top of all this, tomorrow is a shower morning, bowel and bladder care, OT, speech, PT and hopefully some time outside. 

Not a bad list for a Monday - the trick will be getting the calls in in between my therapies. We often play phone tag and I can't talk during therapy - that would be like taking a call in the middle of class - not very respectful of a teacher's time. 

It's all about time. Having time to reflect is something we don't put on our lists. I wish we did, because it is important to build it in. Theo and I did some reflecting on the way home tonight. Man, can you believe that I said that? What I mean is, on the way back to Parkwood. Here is what we came up with: The first time of many things is often hard, the first day at school, the first day of a new job, the first day in prison...just started "Orange is the new black". What made this first especially hard was that it should not have been hard, after all it was just going home. Home has not changed, it's me that has. And that is something that I can't seem to get my head wrapped around yet. 

The other thing that may have lead to my crash on Saturday was just holding on for so long. Holding on to get home, holding on to be in the peace and quiet, holding on to hold on to my kids and share a bed with Theo. I know that many times I have done the same thing while working - holding on and tricking my body to stay well. There is no time to phone in sick while teaching, so we tell ourselves to stay well - and then when the holiday or long weekend comes - there is the crash. 

I am sorry that my crash lead to so many tears, I wish I could have changed it. But I am glad it happened because now it is over. The first time is over. Now I know what to expect and what I really have to get ready for. I will keep working on getting stronger. Funny thing happened on the way home. We made a stop to pick up some dinner. Getting back into the Element (it is quiet an uphill slide) and once in the passenger seat, I said to Theo, "that was mostly you" meaning he basically pushed me up the slider board and into the car. What made it funny was that he was just about to say the same thing to me, meaning that I did all the work. So my upper body is getting stronger, and now I have evidence. A good thing for my scientific mind. Another funny thing, speaking of minds, is that in my brain testing I am doing just as poorly at the math as I ever had done before. How about that Boys of Science, that wack to my head added no new math skills. Too bad. 

Dystopia

Imagine that you were living on the International Space Station for several years. Your time away causes you to long for your family, friends and life back on Earth, but you pour all your energy into your scientific experiments and on keeping the station running.  When your time is finally over on the ISS, you are ready, excited to return to the way your life used to be. Now also imagine that while you were away you forgot completely about gravity? You come out of the landing ship unable to walk, can't find the muscles that you know you used to have and can't do the things that you used to do - even though your home has not changed. The children you love are still smiling from the other side of the table, the kitchen still in a comforting state of disarray and your loving husband still warm in bed beside you. But this thing called gravity it is preventing you from doing all those things you used to be able to do.

So this is why my weekend home, by utopia, has turned into dystopia. I have been living on the ISS, pouring all my efforts into therapy and healing, where laundry is done, food is delivered on a tray and there are at least eight different (highly trained) people continuously available to assist me at any given moment. So when I returned home, to the place where I (usually) enjoyed doing all of those daily living activities like cooking, cleaning, laundry, playing, and can not do them, I start to give in. All my work on the ISS, what was the point? I wonder how I will ever be able to overcome this (gravity) and participate in life again? My wonderful children seem to understand and are helpful as much as they can be, and my most patient and caring (untrained, but quick study) husband goes above and beyond to help. But when all I want to do is get up off my chair and walk over to the couch to be beside the warm wood stove, and can't, the reality of my situation sinks in evermore. In my life before going to the ISS I used to be able to get up and move to wherever I wanted to. Now I can't.

I can't get up stairs to say goodnight to my kids in their beds, I can't reach the kitchen sink, dishes or oven controls. In fact if I am in the kitchen anyone else who dares to join me does so at the risk of losing their toes. I can reach the microwave, but can't hold a bowl of oatmeal or a cup of coffee and roll my chair at the same time. In fact the slope of my legs makes it impossible to carry anything without the risk of it landing on the floor.  I can get into the bathroom, but can't reach the light. I can get into the office, but the carpeting makes for a difficult turning radius. Ella and I attempted to get out to the garden only to get caught in a hole in the lawn that even Theo had to turn my chair around in order to extract my tires.

I have had an extraordinary amount of pain in my back this weekend. I am unsure if it is the result of the long drive home Friday or the softness of the mattress we are sleeping on. I have taken more pain pills then usual and even lay on the floor on a sheepskin in front of the fire to try to ease this discomfort. That of course presented the problem of gravity again - requiring the brute strength of Theo to get me back up and into my wheelchair.

Ella and I are going to make butternut squash soup for lunch today, something that I would have done with voluntary assistance in the past, now I will be doing it with supervision. Maybe I'll be helping by chopping onions at the kitchen table, or pealing some apples and pears. I know that we will adjust, and make some changes to the house to make things a little more manageable. In the mean time my frustration level, sadness and longing for how things used to be is unbearably overwhelming.

Fast Friends

This is me with my new friend Dave in front of the nurses station in 4A East.

Now watch this:Murder Ball.

So now you know what Murder Ball is and who my new friend is: Dave Willsie - Team Canada Wheelchair Rugby - 2015 ParaPan Am Games Gold medalist. And that is the gold medal in my hand! 

Dave came to see me this week on Tuesday; Joanne (charge nurse) came into my room in the morning and said that I had a visitor. Dave rolls in and says "so, you are the famous Julie". Apparently people have been talking about me? I had seen Dave's pictures in the hallway here as the "Parkwood Boys" with their medals, but didn't recognize him. Dave is a quadriplegic, and has been for 20 years. He has travelled the world with his rugby team winning both Olympic and ParaPan Am Games medals. 

Dave is my new fast friend. We just clicked - started talking about everything. There is some kind of invisible barrier that just melts away and everything is on the table for discussion. He was "checking out" my chair (his words, not mine) and I now know a lot about what I should be looking for. He told me about how he learned to live as a quad from all the guys on his rugby team - while travelling! The functions (or lack thereof) in a paralyzed body are unique and complicated and newbies like me like to gather as much information as possible. Dave lives in his own house and runs a business with his brothers, all while traveling the his team. Next week they are on their way to England. He is such and inspiration to me - gave me a huge boost of confidence. Thanks Dave.

While he was here he hopped out of his chair to show me his seat cushion. Right from his wheelchair into the visitor chair - no slider board - and it happened so fast I almost didn't realize he was doing it. Later, I was thinking about how easy he made it look, and then I thought well of course, he has been in a wheelchair for 20 years. I need to cut myself some slack - I am only two months in, but my slider board transfers are getting pretty slick...

Next Friday my Rec Therapist and I are going to go and check out the Para Swimming at the pool here in London. Very exciting!

I know, I know, pace yourself, Julie. 

Staycation

For the first time in two months, Theo and the kids will be staying home for the weekend. They will not be doing the 1.5-2 hr drive down the pokey highway all the way through the city to see me. Instead, I am going home. That's right, I will be doing that trip in the opposite direction, Theo is coming to get me, and all my paraphernalia, and I get to spend the weekend in my own home!

I have told a few people this, and their first question is "what about the house?" which really means - what state is it in, has it been renovated, how will you manage? The short answer is that nothing is different, we have made no major changes. The long answer is that we are borrowing equipment from Parkwood to make it work: a ramp, a commode, a tub bench and of course my loaner "carbon lite" manual wheelchair. Our bedroom is now in the dining room and the table in the family room. The doors are wide enough, although not ideal, as I will have to watch out for my knuckles.

And we are just going to see how it goes.

Next week is my "discharge planning meeting" where the Parkwood Yellow team and my Rehab First team will get together and outline the plans for when I leave this place on October 22nd. I know a big part of that planning will be about how I will manage at home, and (as you know) I will want to have something to say about it. How can I contribute meaningfully if I have not given it a try for myself? So here we go - to give it a try.

This is going to be a very emotional and exhausting weekend for me. Theo is concerned about how being home, and seeing all the things that I used to do while standing on two legs, is going to affect me. I know it will, and I know that I will cry, likely a lot. But I am ready. I have been waiting for this time for far too long. Time to be with my kids, listen to them tell me all of their 9 and 12 year old ideas and thoughts. It will also be time to be in the quiet of the our lovely country 10 acres. Time to sit with Theo and share ideas and make plans. Just us four.

So wish us well, I know you all do - and when the time comes that I am home for good and rested and ready, we will welcome you to a big thank you bash - because we are so thankful.