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.  

It’s been 10 years since our son’s diagnosis with muscular dystrophy, so our family decided to create a web site that chronicles our day to day journey, and to post stories, anecdotes, pieces of wisdom, special milestones…. whatever comes to us during this journey on earth that we are all part of. 

It’s our hopes that it will bring peace and hope to many of you traveling your own road, and to provide support or understanding. Know that you are not alone.

Please read Our Story in the accompanying tab (above).

Blessings,
karen, neil and tristan