The Ramp

         “Poetic justice” are the words I would describe the events of this last weekend. This particular week had the potential to break me, but instead I had to console myself that A- my life is not normal, B- I am doing well despite how I see myself and C- I love shopping. (OK, I already knew about the shopping but it is a coping mechanism that I have perfected over the years.

         The month of October is EB awareness month. For those who take time to read this, my hope in writing is that even through the worst circumstances we are able to see humour and find joy through our trials.

         Kourtney has had an electric wheelchair since kindergarten. Because I am such a big bad mama bear I have always insisted that Kourtney walk as much as possible. She was only allowed to use her chair for long distances and to get around the school. I never wanted a ramp for our van nor did I ever want to make our home accessible; no wide doors and no stair lifts. The reason I did this was for her to keep some walking muscle memory.  It also allows her to go places that aren’t wheelchair accessible like my parents home of her Uncle Wonderful’s.  Of course the number one reason is so she can transfer onto the rides at Disneyland!

         Over the years though, Kourtney has become increasingly dependant on a wheelchair when going out places so we purchased a manual fold-up wheelchair. Having this gave her the ability to go out with friends in their own cars. With Todd and I both working we would have needed a 3rd vehicle to get Kourtney around.

Although an accessible van is ideal, they are expensive, and puts limits on the number of passengers can fit in the van. This makes it difficult to bring caregivers on family trips and outings. Bringing a caregiver has been our way of life for years now. Not only is the help necessary, it also provides companionship for Kourtney. Over the last few years Kourtney has been requesting a ramp for our van or a new van that is accessible.

         Kourtney presented an insightful case for a wheelchair accessible van. She says that people stare at her more and are more likely to  talk to the people pushing the chair instead of her. Over the past few years she has developed a social anxiety. She doesn’t like to go to places like church or gatherings as she feels she is stared at and ignored. The Handi-dart is unpredictable and taxis are so expensive and unpredictable.  This evidence was enough for Todd and I to look into options for her.

         The best and cheapest way for us to get her electric wheel chair into the van was to buy a 5 foot long metal ramp. It is clumsy and somewhat cumbersome, but for now it works. The electric wheelchair alone takes up a lot of space and the 5 foot long ramp has to fit in the van as well. This means that our 7 passenger van becomes a 4 passenger vehicle. Which brings us to last weekend.

         For the past 15 Thanksgiving long weekends (missing only about 3 years) my family has met in Sylvan Lake, Alberta for a family reunion. Sylvan Lake is a 1100 km drive through the Rocky Mountains from Abbotsford. Over the past 7 years we have taken a caregiver with us. As Kourtney has gotten older she has grown apart from the Saskatchewan group of relatives and was undecided whether she wanted to go. As we have learned to do, we gave Kourtney the option to stay home. After some thought she reluctantly obliged to go and but negotiated that she take her electric wheelchair. This meant we couldn’t take a caregiver with us. This did not sit well with me. With our increase in funding it is rare for me to do a dressing change, mix her medication for the day or even get her up in the morning. For those who know, Kourtney and I have such similar personalities that we usually end up in some kind of disagreement while I am doing her care. My one consolation was that Todd would be there to help out as well. It’s so much easier when we are able to tag team her care. I do not take Todd’s willingness to help for granted. Not many men would be so willing to be a part of the care of their 21 year old daughter.

       A week before our road trip Todd fell off his bike and “did something” to his upper thigh. His pain was intense and he couldn’t put weight on it so we had to call an ambulance to take him to the hospital. X-rays ruled out a broken femur but the pain continued. Todd managed to work and asked the family doctor if he was fit to go on the trip. The doctor reluctantly gave him the go ahead. This prompted a serious one to one talk with Todd and I. I did not want to be Kourtney’s caregiver and his as well. I gave him the option to stay home with Kourtney. By then though, Kourtney’s mind was made up that she was going. This put some added pressure on Todd to go but I also made it clear that I didn’t need two patients. Famous last words.

         Todd drove all the way to Sylvan Lake. Although we broke the trip up into two days, his leg pain intensified. To be honest I found it hard not to do the old eye roll when he was waking me up at night because he was in pain. Lack of sleep is my biggest catalyst for a decline in my mental health. I stayed accountable to my sister Sharon to not allow resentment to take over my compassion. To help me keep perspective this is the man who once stayed over night on a mountain with a broken ankle, walked around for a weekend with a broken fibula, endured kidney stones and corneal infections. Some of the worst pain known to man (other than childbirth and EB).

         Todd still managed to help out with Kourtney, which I was so thankful for. But we knew the 11.5 drive home would have killed him. So we made plans to fly him home on Sunday. This meant that I would have to do all the driving home. With snow in the forecast I was uneasy about driving through the mountains. I felt overwhelmed. The one thing I knew though is that when I need the girls to support me they step it up. Both of them knew how uneasy I was and I started the trip out tired. 

        

         You see, the night before I had to make a 3 hour return trip to Calgary to drop Todd off at the airport.  Todd’s pain was so extreme that he had to use a wheelchair to get around the airport. When he arrived in Abbotsford he called for an ambulance to pick him up as transferring into a vehicle was too much. So, I drove to Calgary and back, had to pack and get Kourtney ready that night. My sleep was troublesome as I envisioned Todd throwing a blood clot or losing circulation to his leg. I kept my phone close by and waited to hear from him. Although nothing sinister happened as I imagined, there were still no answers.  They sent him home after more X-rays and an ultrasound booked for the next day. This frustrated me more as I lay in bed, wide awake.

         After a short sleep I woke up to a fresh layer of snow. Thanks to my brother and brother-in-law they helped me pack our van. Shaelyn and I managed to get the wheelchair in, but I knew that getting it out was going to be tough as we had piled our luggage and bags on top of the ramp. The tears flowed as I anticpated the long drive ahead. I was able to console myself that we could spend the night in Revelstoke or Kamloops if it became too much. But once I got behind the wheel I went into stealth driving mode.

         I love having a GPS on while I drive. I love seeing the km’s go down and try to beat the suggested arrival time. As we drove through sleet and snow, dry roads and wet roads, our destination to Revelstoke was approaching. After 6 hours of driving we needed a pit stop. Kourtney slept for most of that 6 hours and like clockwork, 5 min from Revelstoke she said she had to poop. This was an unusual request as Kourtney rarely needs to even pee on a road trip, never mind #2. But remember the electric wheelchair and ramp?  How the heck would I get it out? I had visions of Shae and standing with Kourtney on the side of the road helping her pee. The best solution was for Kourtney to make a run for it (no pun intended).  As my mind was formulating the exit plan I concluded that Tim Horton’s bathrooms on a holiday = line ups. My best option was the Denny’s. I made Shae go in first to get us a seat. What occurred next was a well-deserved reward for big bad mama bear who made her daughter walk. I helped Kourtney out of the van and said, “RUN!”  Run she did. The bathrooms weren’t close to the entrance but adrenaline took over. She just made it. As Kourtney was serving up her own Grand Slam I was trying to get my land legs back. It turned out I had to do the deed as well. Like all moms we put our needs on the back burner, I had to hold it all in as  I had to find a place to sit Kourtney down. Shae was patiently waiting for us and when it was her turn  she  made sure she didn't  use the stalls we did.

         None of us felt hungry but we also knew that a dump and dash was not a good way to thank Denny’s   for their patronage. We started to giggle and totally enjoyed our time together. The best part was that I forgot about the hour gain from Alberta to BC. That was enough to give me a second wind to push it through to Abbotsford. In 5 more hours we made it home. I usually unpack as soon as I get home but I went straight to bed. Requested that no one talk to me and no one including the animals sleep with me.  Most of my night was spent waking up in fear that I had fallen asleep at the wheel but it sure felt great to have a good rest.

         The rest of the week has been spent going with Todd to doctor’s appointments. Still no answers except that he could rule out fractures of the upper and lower leg, tendon tears, blood clots or compartment syndrome. The pain is getting better but ever so slowly. He’s on and off crutches and looking forward to getting back to work and biking!

         The girls and I giggle about our trip and are so thankful we stayed safe and no accidents inside the van. I will always remember this trip as it was a confirming moment that pushing Kourtney to walk has been a good thing. We did manage to do a lot of shopping and time with our family was very special.

Happy fall y’all.

No signs of cancer since July! We are so excited we are going to Disneyland in November!!!