I've been reflecting a lot this summer on being a Mom and what it has meant in my life. Perhaps because it is the first summer the girls have not been able to be here much. I miss them a lot, but also feel a sense of pride that they are out in the world doing their thing. Isn't that what we all want for our kids?
I'm thinking back to the early years and how much I loved being at home with them. I cherished structuring our day with play, learning and friends. It was a job to me. One I loved and was very passionate about, but the most important job I had ever had, or would have.
Among the many things I wanted to impart on our girls was a sense of confidence in themselves and their abilities; therefore they were exposed to a lot of learning opportunities masked as play so they could always feel comfortable. For example learning to skate, swim play a musical instrument, and another language. I had always felt that given the right tools most kids could make it in this world. Having spent so much time working with youth, I saw lack of confidence came often with lack of knowledge. Feeling foolish for instance because all your friends were skating but you didn't know how. Those were the easy lessons. Important but easy. What wasn't so easy was the one thing I wanted to impart the most, and that was resilience.
I have always felt resilience is the one thing that can get you through life when nobody else can help. If you have that you can make it.
In the past year we have been thanked by both of our daughters in different ways,for teaching them what a sense of resilience can do for them. It turns out that the years of wanting to impart it on them wasn't in vein. They did get it, but it was also reinforced by watching us. They said my health issues has shown them in both their Mom and Dad what resilience looks like. Me pushing on and doing everything in my power to recover, and their Dad being the husband and Father who keeps it light, but devotes everything he has to family in their time of need. So you see, sometimes there is a silver lining; we demonstrated in a positive way the very thing we wanted them to have without even knowing we were doing that.
It was obvious however to both their Dad and I how much they had already had. Jerri had started her career in an intensive neonatal unit by day and visiting me in a hospital by night; and Meghan working in a lab and lake in Sudbury all week long then driving to Toronto every weekend to see me. They were strong, added levity, humour and caring, and made their parents so proud. Sometimes it takes a lot for us to see what gifts we have imparted onto our children but it doesn't have it. If you parent with intention then you must trust it is already there.

Our anniversary was on Saturday. We've been married for 23 years and if you have been following the blog or know us, you know how much my husband helps me with recovery. He is great, and I don't mean he does it all for me, he helps find ways I can help myself. He has allowed me to keep my independence as much as possible by only doing for me what I can't do for myself.
I know there's a fine line that comes with a long term condition or illness. It's that line that couples stumble over all the time. Some complain they don't get enough help while others hate the hovering and overcompensating. We've hit a good spot in our marriage, it's not perfect but it is pretty great. Barry is there for me when I need him but he backs way off when I can do for myself.
This weekend we decided to do something we haven't done for a while, and that's camping in a tent. We wanted to visit a tiny island on the big lake we swim and fish on. With careful planning and a lot of effort on Barry's part we made it happen.
Camping requires a lot of energy and while I sometimes don't know my limits he seems too. I was responsible only for the food, he did everything else. All the packing and unpacking, setting up and taking down of the camp. If I had done those things he need that would be all I could do.
We had a wonderful time. It felt like an adventure. We headed out on Saturday morning with the boat lad ended down and a happy dog up front. It was only a few minutes when we were at our destination, which to our surprise was occupied! In all the years we lived here we hadn't seen people on this island. We were disappointed but decided to keep looking. We found another little island with a sandy beach and docked the boat.
We set up camp at Plan B and it was fantastic.
The key to our success was a lot of planning, and being flexible and having a husband they doesn't mind doing most of the heavy lifting.
We chose a place close to home; that way if we needed to come back because of pain we wouldn't have far to go. It also meant that just getting there wouldn't be painful. And after our camping experience a long drive wouldn't be required.
A comfortable chair was essential. We found the most comfortable outdoor chair and brought pillows along to add to it.
Not one, but two air mattresses. Inflated in the right way they can be not too bad for sleeping. They are also great for outside to stretch out on with pillows.
The food. Cooking while camping can be half the fun but it takes so much energy. Food was basically my responsibility so I decided to keep it simple. It consisted of pre made salads, pre cooked salmon for lunch and pasta with a homemade sauce from the freezer. All took only minutes to prepare.
To make it even simpler we could have used paper plates as well, but since it was only a couple of meals we didn't.
The focus was just to get out there and enjoy nature. We did. We watched a mother duck and her babies, we saw turtles, a beaver and many fish jumping around us. It was most fun watching Whinnie, our Golden Retriever who swan for hours on end. She was like a toddler, in a toy store. She explored the island then ran to the lake and jumped in and then repeated the process hundreds of times throughout the two days we were there.
All three of us were exhausted when it was done. The walking on uneven surfaces, the sand, swimming and being outside was a lot for me. For Barry the loaded and unloaded was added to his list and for Whinnie the hours of fun had her completely exhausted. That kind of exhaustion is different. There's a satisfaction of accomplishment a sense of contentment and the memories it brings that makes it so worthwhile.
So if you have a goal that seems a little out of reach for your level of health, plan well and give it a try, it may be worth all the extra effort.

What does it do to us when we see a friend go through a health scare?

It has shaken me to the core. I know as we age we will see it time and time again, but it has left me with an unsettled feeling. On one hand it scares the life out of me, on another it motivates me to do as we have been doing, living life to the fullest.
Living with the spinal injury has been difficult but had actually become commonplace. There were things I could do and things I couldn't, bad days of pain and very good days without much pain at all. Even when I had been given the secondary diagnoses of a lung disease, we took that as it came. Things were not perfect, but we carried on and lived as comfortably as we could.
During that time we often talked about the travelling we would do when Barry retired. Although we travelled each year, it was generally within Canada and we longed for trips to Europe, Asia and beyond.
It was when I was diagnosed with severe spinal stenosis that required surgery to pervent paralysis that we saw the writing on the wall. Who has faced the threat of paralysis once let alone twice? It woke the both of us up to a future that may be uncertain. We started to realize if I'm doing well enough to travel after the surgery than we must. We can't wait till after retirement. I may have more restrictions than I do now.
With that in mind we decided on a trip this fall to Italy and Greece. My sister and her husband had wanted to go for their 40th anniversary and asked us to go along with them. We agreed.
It has been great motivation for me to get out walking and get this rehab on my back done. I have been averaging three kilometres a day and there are days when I walk much further. It is hard to believe a little more year ago I was in a wheelchair, used a walker and was in a rehabilitation centre. With hard work, and a lot of help, I've come a long way.
We plan to modify some of the tours to suit our needs and other times my sister and I will choose easy routes and join the guys later. I'm happy to push myself, but smart enough to know if I push too hard it will ruin the trip, so I will moderate.
I've had to give up a lot of things because of my condition. I have often felt sad to not be able to participate in some things, but I have also known the pleasure of being able to know my limits and work around them. I've worked hard this year to get to where I am, and sometimes I see someone out for a walk and wonder if they ever realize how fortunate they are to have two working, strong legs. I know the answer, nobody thinks of those things until it happens to them or a close friend. Be grateful, for all that works on your body, and do what you can to keep it working. I know I am!

My knee has needed to be replaced for as long as I can remember. I overused it years ago while learning to walk again. You see I don't feel the left side of my body, therefore I leaned very heavily on it when I was starting to walk again. What I didn't know was I was shifting most of my weight onto that knee and using the strength of the left leg to make up for the deficiency on the right. It worked. It got me walking again, but it put enormous strain on the joint and it wore down. A couple of years later I started to have a lot of trouble with it. Several minor surgeries later and I was told I would need a replacement. That was at least ten years ago.
My surgeons in Toronto think it is a very risky surgery for me and wanted me to wait. Well I have waited and luckily found a work around. It is a product called synvisc. It comes as an injection and is put right into the knee. It adds cushioning where there is none. I have had as many as three shots a year and some years only one. I had carefully scheduled one for this month to help with my walking. I got a call yesterday cancelling today's shot. I was told the doctor wants further investigation before I have another shot. My luck may have run out.
I'm waiting to hear back from them but my hope is I get a shot before the Europe trip because without it, walking is painful.
Then there's the risk of being told my time is up and surgery is required sooner rather than later.
That will be a very careful decision and I can't go there right now so I'm choosing to not even think about it.

I know for many who have chronic illness, with pain, this topic will hit home. I have been doing this since I realized the tole it takes on loved ones to constantly have to think about my comfort while we do something fun. If I decide to do something I try to make it look easy.
When you first have the pain/illness you say I can't, or your family says you can't. Then comes a time when you realize you cannot keep saying I can't or life with get away from you. What came next for me was trying things cautiously. What I found was all focus was on me, my comfort, my risk and everyone had an opinion. They did, and they should have at that time, because they were all greatly invested in my well being. If you are asking for help, understanding and people to accommodate you daily, then yes, they do get to a say in what they think you should, and shouldn't do. It's another one of those things those of us with disabilities must accept.
One very clear example was recently we visited a friend who has been dealing with chronic pain for about three years. It has greatly affected her life and the lives of her husband and family. It has been a very long arduous process. She is finally feeling more like herself, but is far from pain free and does require quite a bit of assistance mainly from her husband. During our visit another friend was texting her to ask if she would consider parasailing. I honestly don't think she would actually do it, but she wanted to consider it. The thought of it actually petrified her husband and he could see all the hard work going down with her sail.
I decided to speak up. I understood both sides completely. I know I love to ponder things. I know in my heart that there are a lot of things unavailable to me now, but I still like to ponder the idea. I also know the hard work and compromise it takes to be a partner of someone in chronic pain. It must be terrifying to see what must look like a cavalier decision.
What comes with pain, is the need for others to help, compromise and adapt. What they need from us is sincere appreciation for those things they offer us selflessly. In conjunction there needs to be an innate mutual respect for each other's needs and dignity. It is a complicated dance. Nobody wants to be told what they can and cannot do; however it is important to feel you're in control of your own decisions. It takes careful consideration on both sides. Bottom line is we all want to feel normal; do normal things, dream normal dreams, but we also need to live within the confines of what life has brought us, while pushes ourselves daily, with love and respect for those around us.
Yesterday was spent walking most of the day. It included walking through the streets of Old Montreal, walking downtown Montreal standing listening to the music of the Jazz Festival and shopping. All were difficult, but I loved it. I decided ahead of time to try not to talk about my needs, to just do my best and naturally find places to sit, and to rest when I could. It worked out pretty well. The one area that is often a problem is sitting in cafes and restaurants with hard chairs. When we stopped for dinner, the cafe did have booths which are ideal, but we were lead to a table with hard chairs. I decided to have a rest room break and when I came back all was solved. We were seated at a booth and it was comfortable. I felt like I accomplished what I set out to do. Everyone had a fantastic time. We left maybe earlier because of me and my legs but it was still a very full, happy day.

Before I published my blog I asked my friend if she would read what I had written and agree to me publishing about her and her pain. Here is part of her response. As always friends are key to helping us through anything. They are our mirrors, our support team and our cheer leaders.

"We were just taking about this - we still need to live and keep our bodies moving or our world becomes too small. Look at what you've done this year; Florida, Newfoundland several times, Ottawa several times, Toronto several times, Montreal, boating, family visits and meals (I know you) and soon Italy and Greece. I really need to gain more courage and learn from you.
This is all in the year you had 3 back surgeries. What the HELL?? Unbelievable. You have kept your world alive and HUGE. You have assessed, prepared, made accommodations and then gone forward. That's how to do it my friend."
That was her answer to me. You see sometimes you need a friend like this to point out all that is right, all that is going well and how you finally have gotten to be able to assess and accommodate most things.
I feel oppressed daily by the little things and sometimes quite lonely, but when I look at the big picture it isn't so bad now is it.
Who cares if I can't stand in line at the bank or the Vatican for that matter. I CAN do a lot of things. And I'm willing to take the time to find out how.

We did it. We have our girls together for a family weekend. It took a lot of planning but here we are in Montreal in a beautiful home with a pool. We have a lots of areas for reading/studying and a big beautiful kitchen to prepare fabulous meals.
We wanted the boyfriends as well, Travis was able to make it but Shayn is in a wedding this weekend so we are missing him.
We traveled six hours to get here and that in itself would have been impossible for me in the past. I do have some great car adaptions I will share with you. First and foremost I have a heated seat, which I have learned to use intermittently. Having it on all the time can make the pain worse I found. I also have a small foam knee pillow that I use for lumber support from time to time. Finally in the seat itself, I have a wobble air pillow to sit on. It takes pressure of the tail bone area and causes muscles to move slightly as you sit. Again, I use this for awhile then take it away for awhile. Finally I drive at least fifty percent of the time. Being a passenger is harder than driving surprisingly. My physiotherapist told me years ago and I have tested his theory and he is right. The biggest advantage to helping with driving is to use cruise control so that your leg is not in one position for a long period of time, which can cause back pain.
Having breaks is key, keeping them short is best because it doesn't prolong the trip too much. That's how I do it, and it works out pretty well for me. I do have pain and discomfort but travelling is worth it. Having my family together to explore Old Montreal once again, along with the Jazz Festival will be so much fun.