On Wednesday, my son went for his annual respiratory test. It’s never good news. With a muscle-wasting disease like DMD, his lungs weaken because they are muscles too.

We’ve been down this road many times in our journey, and I’m always just trying to get thru. But after years of having the same approach - hanging on for dear life – I’ve become exhausted by it all. Lately, I’m wanting to create a fresh start in many avenues of my life (must be because I’m getting older.)

My son, Tristan, has always been pragmatic about it all. “That’s just the way it is,” he often says about his condition and his lot in life. I decided I needed to join him in his wisdom this time.

As we were driving down the highway, the Eagles Peaceful, Easy Feeling was playing on the radio, and I let their words seep inside of me and the fear was replaced with gratitude. 

“I get a peaceful easy feeling, and I know you won’t let me down, ’cause I’m already standing on the ground.” Someone, something, is with us, always, that much I knew. And yes, after all this, we’re still standing. We’re still here.

At the hospital, the technician was quick and thorough, and he was funny and warm, something rare in our often stay-at-a-distance medical model of ours. Then he had to take Tristan’s height. Of course, Tristan can’t stand so they measure his outstretched arms, from tip to tip, which gives us an idea of his height. I’m proud to say Tristan is 5’3″, which suited him just fine: he had finally surpassed his mother’s height of 5′ 2.5″!

As the technician was measuring, I watched from a distance…and I let myself drift. I don’t often allow myself to think about the what if’s: what if Tristan could still walk? What if he never had DMD? What sport would he do? What would he look like walking? But this time, I chose another way: I allowed myself to drift in that dreamy place for several minutes, a luxury I never afford myself, and I reveled in the possibilities.

That evening, I had a dream, a lucid dream, where you actually know you are dreaming in your dream but you go with it anyway. In my dream, I was in a lovely garden when suddenly Tristan came walking up to me. He was several inches taller than me, and he stood beside me, looking down at me and gently smiling. I was in awe. “You know honey, this is just a dream,” I said. “I can’t stay here for long.” He looked at me and smiled and said, “I know mom, this feels really good.” After several minutes of standing with each other and feeling the warm sun on our skin, I felt the air shift. “I have to go now honey, but I don’t want this to end. I love you”. “Neither do I”, he said. And suddenly I woke up.

Some would say that what I allowed was a cruel hoax: to allow myself to see and feel what we could never have. For many years I would have agreed,  but for some reason, this time, I wanted to investigate and go into the possibilities of my son being healthy and whole and walking again. And as painful as it was, it was truly one of the highlights of my life.

I can’t explain the dream, other than it felt like a portal, a parallel universe, perhaps, where there was no disease, where my son stood tall and proud, and where the possibilities of what could be lay on the horizon. It was a bittersweet moment in time, somewhere, that I will treasure forever.

Several nights later, I relayed my dream to my husband, and he said the most amazing thing. “Funny, I was going to tell you that several nights ago, I had the same dream - that Tristan was walking. I’ve never dreamt of him walking before, and it was so real.”

Just dreams? Who knows. Maybe we did step into something bigger and more mysterious than we could ever imagine. I’d like to think so.

This past week, I cancelled my son’s cell phone for good.

You may think this is a great move, given todays teens’ preoccupation on technology. You may wish you could do the same thing, no doubt. But our reasons would not be your reasons, to be sure.

See, sadly, our son can no longer use his phone. As his disease progresses, and as his muscles break down, he’s losing the finer motor skills required for smaller movements. That now includes using his cell phone. 

With a progressive thing like Duchenne Muscular Dystrophy, there is always something to give up, and we’ve seen many milestones erased from his life as a result – riding a bike, kicking around a soccer ball, walking the cul de sac, eating his lunch or turning the TV channel. They come and go, like pictures from a camera out of focus. And so it goes… 

When I cancelled his cell phone subscription, the clerk asked me the reason….the admin person on the other end of the phone whom she was talking with wanted a reason to not charge me the additional $50 to cancel his phone.

“He won’t be using it anymore,” I told them. That wasn’t good enough, apparently. Not one to normally lose my cool, it was a tough week. I grabbed the phone from the clerk and spoke in a firm but calm manner to the faceless voice at the other end.

“My son has a degenerative disease. He can no longer use his hands like he used to. He physically cannot use a cell phone. I trust this is reason enough.”

I handed the phone back to the clerk. The store was silent. “I’m sorry,” the clerk muttered in her sweater. I told her it was ok. How was she, a 20-something healthy woman whose whole life was invested in technology and the thrill of it all, understand my son’s situation?

As I exited the store, I paused outside. I reminded myself that we had been down this road many times over the years, and that the letting go never ends, really. You just learn to accept it and let go faster with the next round. There would always be more to surrender to on a journey that continues to take. That I know for sure.

Standing there, on the sidewalk, I took a deep breath, and I silently I gave thanks for all that we still have – him, us, hope, time together – something I’ve learned to do through this challenging road of ours. Because I know for sure that gratitude helps tip the scale the other way, taking some of the pain and regret with it.

It is what it is, I tell myself…again…and I head home.

Last month, my son turned 16. I figured it was time….I asked him (like I ask him every  year) if he was ready / willing / wanting to donate his hundreds of hot wheel cars that he’s had since he was a baby. This time, his answer was different.

“Sure, I think so,” he said. Great, I thought. Time to de-clutter.

So I gathered up all his cars, over 600 of them, and loaded them up and took them to the end of the driveway for pick up. It was a milestone in more than one way.

Ever since he was a baby, Tristan loved to play with his hot wheels. We had one of those fancy car mats and he would zoom his cars all around them. I would sit close by and supervise, of course, but I was always too busy to join him, between college studies, freelancing and being a single mom for part of his young years, I would sit for a bit, then return to my duties. One time he asked me, “How come you never play cars with me?”. I don’t recall if I answered him.

Several years later we learned of his diagnosis, and soon, he was unable to sit comfortably on the floor and his car-playing days came to a close. Had I known then what I know now, I would have made very different choices.

As I carried his cars out to the end of the driveway, I felt the sharp pain of regret stab me in the heart: why didn’t I just sit with him and play cars, build a memory, instead of always rushing off to do something else that needed tending to? 

Some people ask me how I handle a degenerative disease like DMD, and I tell them that in one way it’s a gift: I now know that time is fleeting, and we don’t have the luxury of being lulled into complacency. We have inside information, and we can stay sharp, muscle into every moment and make the best of it. But sometimes I wish I had learned that lessen sooner…Guess that’s what parents do, especially moms - live with the guilt - and there’s always moments of guilt along the way, especially with a degenerative illness like DMD that keeps taking….

Sure, I’ve built lots of memories with my son, but I still focus on times I didn’t build those memories. For me, it was my hot-wheels moment. 

I’ve learned. No more letting opportunities pass. And with that (hopefully), no more regrets.

karen

On Friday, we went to the BCSPCA to give them our yearly donation from my son’s charity. Our donation totalled $970.00.

It’s always amazing to be able to go with cheque in hand and give it to those in need. It also gives us a chance to peruse the dogs and cats within…..

Our son loves seeing them all, but for me it’s a tough go, given some of the hard cases in there – several dogs were blind and deaf from improper breeding, two others were rescued from a mobile trailer up island in which 20 dogs and a bunch of cats all lived, and still another had mange so bad, he looked like he had third-degree burns.

It would have been so easy to not venture in and have my heart torn out. It would have been easier to just mail the cheque to the SPCA. But every year I force myself to go, because if my son has the courage to do it, then I should too. Turning away from the sadness doesn’t make it go away, it only saves me, and that’s not reason enough.  

And so we walk through the hallway, stop at each cage, read the dog’s name and where he came from, and try to piece together his journey or determine what kind of family would be a good fit for that particular dog. Amazingly, none of the dogs are afraid of Tristan’s motorized wheelchair. They often come to the cage and press their noses through the wires, wanting to lick his hand, and I grab my son’s hand and place it near their snout, so they can touch each other. It’s an odd thing, a knowingness of sorts between animal and teen, a kind of connection that I don’t understand, but that I know is important, on some level. 

We’ve been paying it forward to the animals for about 5 years now, and every time we gather our donations, my son insists we drive down there, hand them the cheque, then go in and say hi to each and every animal there. I’m always amazed at his courage, as he drags me along, with my kleenex in hand, past cage after cage….. 

People always think I’m the brave one in the family…no way. It’s my son who is the brave one. I’m just along for the ride.

Today is December 30th and it’s our son’s 16th Birthday.

How time flies…a standard saying, but to us, as real as real can be.

When I look back and reflect on how many miles we’ve journeyed together as a family, and all my son has seen and all that he’s done, all that he’s been through and all that he’s accomplished, I’m amazed and thankful to have been a part of it all with this amazing person I get to call my son.

Happy Birthday honey. Thank you for letting me join you on this journey. I wouldn’t have missed it for the world! XOXO

“The woods are lovely, dark and deep,
but I have promises to keep,
and miles to go before I sleep,
and miles to go before I sleep.” – Robert Frost

Last week my husband asked my son and I if we would go to his new workplace and meet him for a break. I said yes. I wished we hadn’t.

When we got there, his boss (who hasn’t been at the office for months) was suddenly on site. He saw us gathered, and came over to say hi. He said hi to Tristan and shook his hand, bid us a good day, and left. I was very uncomfortable with it all.

See, about 4 years ago, I learned a lesson on human behaviour. I was working for a well-known realtor, and I disn’t share Tristan’s condition with my employer because I didn’t want to go there. He found out from an employee and asked me about it.

“Gosh, it must take a lot of money to take care of your son’s needs,” he commented. I replied it didn’t, really, Tristan was still walking, and the Ministry took care of his equipment etc.

The next week I was fired.

One could say it could be based on poor job performance, or lack of funds or whatever. But he never gave me a concrete answer. But I think I know why: I was a mother of a diabled boy. I was a liability.

I’ve seen this time and time again, in fact ,with a girlfriend, whose son recently went through chemo for an unusual kidney cancer, and when she returned to work, they had given her union shifts to another woman (they said all along the shifts would be waiting for her when she got back). It was some lame explanation like, ‘this other woman had gained more seniority in your absence.” Something like that.

I’m not sure what the fall-out will be with my hubby’s new employer. I’m waiting to see what he’s made of. Will the vision of a disabled boy in a wheelchair cause him to panic and make up stories in his own head? Will he see us as a liability? Or will he see us as just another family struggling with issues, like all families do, and he just happened to see the visual representation of it in a little boy in a lime-green wheelchair?

We’ll see.

Karen

Last week, I had to miss school (darn!) to go to my yearly doctor visits at Children’s Hospital in Vancouver. I ahd a total of 8 appointments, to check my kungs, heart, diet, weight, spine, bones and so on….

On my first day, I met with the dietician who suggested that I should drink more dairy, further suggesting that I should have chocolate milk! Yum! Our next one was at cardio (heart). They did an ultrasound of my heart. The operator told us to wait for the doctor in the waiting room. Two hours later, the receptionist called us in to the doctor’s room. Once again, the doctor increases my heart medication dose every single time. The whole meeting was 5 minutes. Waiting two hours for a five minute appointment isn’t ideal.

On day 2, my first appointment was at 8 am and my last one was at three – long day. Some doctors I like, some I don’t. I like the doctors that are friendly and aren’t afraid to ask questions. I don’t like the ones that are serious the whole time and speak in a monotone voice. It makes me feel not welcome.

Then I saw the respiratory doctor and his student. First the student came in and he was friendly, then he left and came back with the respiratory doctor. He sat down and spoke only to my dad about my lung function…I felt terrified because I thought something really bad was happening. He didn’t even look at me. Then he finally spoke to me…my lung function has gone down a bit, which is what happens with DMD. The doctor then suggested that we take a sleep study to see if I needed a respirator while I slept. They hooked me up to some band-aids that stick to your chest – they noticed that I had good breathing.

They’re not very fun but it’s what I have to do every year.

Tristan

People often ask me how, as a mother, I handle living with our son’s degenerative illness. Simply put, I’ve learned the biggest lesson of all – the fine art of surrender. Finally.

When Tristan was diagnosed, it was very hard to come to terms with how his life would play out: the continual loss of abilities, the surgeries, the on-going medical interventions and the fact that he would always need help the rest of his days. His abiity to work and play, and all simple pleasures, would be severely limited. Life as we knew it, anyway, was over.

It took a lot of years to turn it around in my head, ten years to be exact, and in that time, my physical and emotional health certainly took a beating, but eventually I came to a place of peace with it all. I learned my biggest lesson of all -  to surrender. To let go.

If you’re struggling with fear, chaos, anger or resentment, just try to let go, if only a little. Letting go is not irresponsible, nor does it mean you live in denail. Quite the contrary: when you let go, you are free to move into the heart of evey moment, with lightness, full awareness and with love. It doesn’t happen overnight – it certainly didn’t for me – but the Universe never gave up on me. And I’m so glad She didn’t.

Blessings,

karen and tristan

This is my first blog on my new web site. I hope you like it. I’d like to tell you about my experiences living with a disability at high school.

I’m now in grade 10 and I’m enjoying most of it! My favourite subjects are English and Social Studies, and I struggle with science and math and making friends. It’s hard to talk to people because I’m nervous. I’m afraid of being misunderstood. I need to talk to people first, then they’ll talk to me, but I think they may be nervous to talk to me too. My least favourite times are break time and lunch, because I have no one to hang out with.

When I was in grade 9, my first year of high school, I was a little bit nervous but I was surprised at how people started to pay more attention to me. I think it’s because they’re more mature and I was thankful to be out of middle school and I got all B’s in grade 9, but I think that was a one-time deal.

I am looking forward to next semester because I won’t have to deal with science and math, and I get to do English and my favourite subject – social studies because I love learning about history. It’s one of my favourites.

See you next week…. Tristan

Last week our family took the plunge and purchased a Pro-Bed for Tristan, not a small matter considering the final cost was over $30,000.

Ever since Tristan’s spinal chord surgery in January, his sleep has been very disrupted. My husband and I have been getting up 6-8 times every night to roll Tristan, and to try to make him more comfortable. Needless to say, we were seriously sleep-deprived….and it was starting to show….in our day to day interractions, our health, our relationship and our overall level of happiness.

What we realized was that while we were hoping our son’s sleeping would get back to normal, it never did…until finally someone told us that it was inevitable…he would need to be rolled continuously as things progressed to prevent pressure sores and bed sores. It was neither a doctor or a therapist that provided this much-neede piece of information…it was a well-meaning neighbour who worked in an institutional setting and knew the ins and outs of it all. We wondered why the info had to take this unusual path to get to us.

Again, we came to realize there is no manual for this kind of thing. So many people think that once your child is diagnosed that you are ‘in the loop’ and information – and funding – comes easily.

Nothing comes easy, especially information and the much-needed funding, of which there is none available for this type of thing. Once again, the burden of responsiblity rests on the shoulders of the family as agencies and governments continue to cut back year after year.

And so we continue to meander down this long road of ours, without any parent manual. Support groups…we’ll, I guess they’re out there, but we’re so busy trying to get our daily needs met that it seems us parents just can’t get together to form any such group. And so it continues to be a step-by-step process in which you learn as you go.

But after seven long months of persevering through, our household is finally getting some sleep, and I will be able to return to my work, which I had all but given up, given that I wasn’t able to function with the lack of sleep day after day. For the first time in almost a year, we can see light at the end of the tunnel.

What lays around the next corner, we don’t know, but in our usual fashion, we’ll take it one step at a time, and be thankful for being able to provide this much-needed piece of equipment for our son’s on-going care, which I am thankful we could provide for him. 

I only wish our government would make it a priority to help fund much-needed equipment for other families…because many, many families are breaking down under the double-weight of caring for a child with a terminal illness and not being able to fund the necessary equipment for their care. As a caring society, this needs to shift.