Archive for the ‘Life Reflections’ Category

My daughter’s journey to independence has been a long and often difficult process. This year we stepped it up a notch with the pursuit of a camp that would also provide therapy for Callie. We decided to try Ability Camp (see previous post). Let me fast forward to the day of the trip….Wholly crap were we up early in the morning! It was 3:30am. We got up, washed, ate and loaded the van barely able to focus. Even with the ridiculously well laid out plan and help from family members, we were still running late.  Read the rest of this entry »

I had one of those moments recently. You know, the ones that make you think you are in the right place at the right time. I was having my post operation appointment. Since my surgery could not be done locally, my follow up with the surgeon was far from home – about 150 kms or more. I felt somewhat burnt out when I arrived. For a moment, I wondered if anyone would notice if I snuck into a treatment room and took a nap. I decided that probably wasn’t the best option. So I tried to act as normal as possible. The waiting room was full with the usual suspects, those wanting to hear results, those terrified of potential surgery, and those unsure what’s actually wrong with them. There were the supporting spouses, the solo troopers, the repeat patients and the odd child in tow.

  Read the rest of this entry »

I should probably spare you this story, but nahhh. It’s kind of comical and somewhat a success. If you read my posts you already know that I recently had surgery on my ankle. You also know that my daughter is a wheelchair user. This has made for some challenges for us in the last month since my surgery. I decided to test the boundaries and take her to a movie on Easter Sunday. So here’s the rundown of our movie mission to see “Dr. Suess’ The Lorax.” 

 

Now on one crutch, I rushed about the house to get equipment, lunches and extra everything in case of accidents or emergencies in order. Many times I showed Callie my Easter bunny hop when my wrist got sore and I chose to abandon the use of my crutch. Of course this provided her with great entertainment. Mommy looked funny jumping up and down on one leg. I thought this movie idea would be a nice thing for her Dad to experience with her. I also had a hidden agenda that he could help take her in and out of the vehicle so the plan was in motion. Read the rest of this entry »

It’s been one month since my surgery and it’s been interesting. I’ve scrambled in many ways to function with minimal mobility and still care for my child who has a disability. My respite help has been unpredictable. Either I have a lot or none at all. This led to many challenges. But, I have survived – so far.

My surgery hindered me in another way that was unexpected. If you’ve read my past posts on Rick Hansen and his Global Accessibility Map, you would know I’m a strong believer in what Mr. Hansen and his foundation do. The Global Accessibility Map is particularly of interest to me and close to my heart. I was excited when I heard he was nearby recently with the Rick Hansen 25th Anniversary Relay. I hoped I would get the chance to introduce myself and have what probably would have been a very brief chat given his schedule. Unfortunately, my current situation of mobility and lack of respite support didn’t allow me the opportunity to go. As disappointing as this is for me, I like to think positive and believe the time will come one day.

Now for the good news. I was finally able to complete one of my stories and a chapter of my novel. For anyone who is unaware, I write children’s books that focus on the creating awareness and inclusion for children with disabilities. In all the chaos of my post surgery challenges, I managed to meet the deadline to submit one story and an excerpt from my novel. Now I just have to cross my fingers they’re accepted.

So in conclusion, I am still on the mend with a few extra bumps and bruises. I may not be able to do as much as I would like, but it will all come in time. This period of having to put my feet up gives me time to reflect, envision and write. I hope you get to relax and do the same - but skip the surgery and do it just because. 

 

I’ve been having trouble lately sitting down to write. Since my surgery, I’ve felt nothing but exhaustion. I think some of that has been from thinking about things I didn’t normally have to. I’ve been used to routine and suddenly that’s changed. Making the adjustment into using crutches or a wheelchair has been mind boggling. For example, I can’t cook on crutches very well so I use the wheelchair. My problem then becomes how do I reach the stove knobs or drain my pasta, etc. In the wheelchair, I have ongoing issues of not being able to get close enough to what I need to. On crutches, I can’t carry anything and a simple task of reaching to close the door becomes a balancing nightmare.

 

Normally when I write, my environment has to be quiet. In this scenario, it’s my mind that I can’t quiet. I’m overflowing with questions each day. How I do get my child to school. How will I bathe her? What’s the easiest way to make meals? How will I lift her into bed? Perhaps my situation is a bit unique with both myself and my child using wheelchairs. I know other mothers who are wheelchair users that have children. I don’t know any whose children also use a wheelchair. If I did, I would certainly be picking their brain for advice. Thankfully, I was able to get some extra respite support during this time and some help from neighbours. I don’t think I could have managed without it.

 

I feel guilty discussing my latest mobility challenges when mine are only temporary. So I’ll conclude this post with the utmost respect for all those who deal with these challenges on a daily basis.

 

I have a confession to make. I haven’t been writing much lately because I’ve been doped up. I thought it was best that I didn’t attempt to write when I could barely keep my vision straight, never-mind type on a keyboard. The fact is I finally had surgery this last week on my ankle and pain killers became my best friend.

 

I had been waiting for this surgery for so long, that I truly believed it probably wouldn’t happen and it almost didn’t. One hour before I was to leave for the hospital, they called to cancel. I was about to be rescheduled for an unknown date in the distant future. So, I did what any mother of a child with disabilities would do, I begged and pleaded for them to reconsider. I explained how this procedure was years overdue. My child was getting heavier and I could no longer carry her down stairs without my ankle giving out. I spoke of  how this had taken me months to organize with advertising, hiring respite support, accessing funding, training that support, organizing neighbours, school, transportation, etc. I added how my legs were once my income as a dance instructor. My sanity was coming crashing down in a hurry and though I felt defeated once again, I also felt for the poor women on the other end of the call.  She told me she would discuss it with the administration but it was highly unlikely they would change their mind.  An agonizing 10 minutes went by. Just as I was about to give up hope, she called and said “Could I be there in an hour?” I was two and a half hours away. The answer was a definite “no.” She said “Just drive, get here ASAP.” With that, I had a neighbour come over till my child’s sitter arrived and blasted out the door. Read the rest of this entry »

I sat down for my weekly dose of Grey’s Anatomy tonight. Ok, I admit it’s a little odd that a woman who has had too much of the medical world and not by choice, should still like to watch medical shows. Just Grey’s Anatomy. It’s quirky. It makes me laugh, has me hanging on the edge and well, makes me cry too. 

So there I was curled up with a blanket and a tea, dog warming my feet, child asleep. I was ready. Oh no I wasn’t!

“Preemie Alert! Preemie Alert!” I desperately need someone to come up with an alert, a heads up, a quick turn it off- save yourself!

It’s been years since my daughter was born at 26 weeks and I still can’t watch anything on TV about premature births. It feels too raw and TV sometimes appears too real. 

Did I turn it off?  Noooooo. That would be too easy. Instead I sat there kleenex in hand, eyes focused on my blanket and fingers crunched into my palms. I convinced myself it was ok to look up. Big Mistake. Just at that moment they showed this tiny little soul. Let me say that even now as I’m writing this, I’ve had to delete many lines because they were getting to descriptive and close to home. 

So there it is – the reality that years later and it’s still not ok. Perhaps it never will be. I got over the grief of not having a normal child birth experience. I got over the realization she would be my first and last because life went a different path. I accepted there were things we probably won’t get to do together. I have counselled other parents of preemies. Even after all of that, I can’t watch a silly TV program that shows a preemie birth.

The clips for next week’s Grey’s Anatomy show the family making difficult decisions for their baby. I guess I won’t be watching that now will I?

With the seasonal colds finally dwindling down to a bare minimum, it was back to winter fun. What better way to experience all that winter has to offer, then the annual Sun Peaks Adaptive Snow Sports Festival.

 

It was three years ago, I opted to get Callie her membership with the Disabled Skiers Association of BC. I believed adaptive skiing was a way for her Dad to be involved and share some fun with his daughter. It ended up being a great idea. Callie has been having the time of her life and her Dad is enjoying his little girl.  

 

My deluxe snow-limo ride

As I await surgery on my ankle, I have not been able to hit the slopes and share in the excitement. To my surprise, the folks at Adaptive Sports Association of Sun Peaks decided there was a way. They arranged for me to ride in the snow-limo. Callie was going in a “Guestimation Race” and they thought it would be great if I could see her race up close. Beneath my sunglasses I choked back some tears. I hate to miss any part of Callie’s life and I was going to get the chance to really see her do what she loves. 

 

So there I was, all strapped in and planted on the chairlift. My guide was wonderful to chat with on the way up. On the way down, there was a moment we had to go mach speed in order to catch Callie’s race. I met her at the starting gate, wished her luck and the race was on. The proud mama held up her phone to record the event as we paralleled her descent. Though this video turned out, my earlier efforts to take pictures from the snow-limo ended with a video of nothing but my lap. Seems photography is not my forte when carving down a mountain. At least it worked when it counted most. Unfortunately, I can’t get it to upload. Clearly not that tech savy either.

Ready to race

 

If you are a person with a disability, adaptive skiing is a fantastic outdoor sport to consider. Otherwise, anyone can go up in a snow-limo and your guide will go as fast or slow as you like. It’s a great way for people who don’t ski to experience the mountain and see it’s majestic views. 

 

A big “thank you” to ASSP, DSABC, Sun Peaks and all the volunteers that made this event happen. Fun was had by all!

 

 

 

There are moments when I wonder “Did I do the right thing?” I doubt there’s a parent out there who hasn’t thought that at some point in time. We are responsible for helping our children learn right from wrong, independence, manners, life skills, etc. We are responsible for keeping them safe, making sound decisions for their health, well being, present and future. Sometimes knowing our decisions are correct is a bit of gamble. I don’t know how many times I have questioned myself.

  Read the rest of this entry »

It’s here!  The dreaded cold from hell has arrived at my door.  For the last week I have tried so hard to keep Callie from catching any bugs.  It was clear she was fighting something off.  I had been warned they were dropping like flies at her school. Teachers and students were opting to stay home with their sniffles, kleenex, fuzzy slippers and bathrobes.  So we did the same just trying to avoid it.  Clearly that didn’t work.

I feel horrible that this is all I have to share with you today.  I’m  cursing myself that I stayed up untill 3AM Saturday night playing cards with friends.  I was already exhausted and that’s when it gets me.  The evil little germs take advantage of the over-tired mom and BAM! I’m sick, Callie’s sick, even the dog looks under the weather. 

If only I could learn that having a life can not be abused by ignoring my body signals.  There’s that little voice that reminds you when you’re going too far.  Slow down before you fall down.  “Do I listen? Noooooo.”  I decide I’m super human and can do everything on my agenda and more.  Is it any wonder I feel like I should be walking around with a big “L” on my forehead.

So, here I am, the less then pretty picture, scarf around my neck, fountain coming from my nose, sneezing so hard the neighbours can here me and a vice grip squeezing my brain.  Ughhh.  This is so not what I wanted to be doing today.  I’m sick and tired of being sick and tired. 

Snifflufogus, signing off.  Keep well my friends.

 

(Wheel-ist-ic) Adj: awareness or acceptance of actual fact, real existence, or truth with relation to inclusion, accessibility and/or persons with disabilities.

Let’s Be Wheelisitic is a blog designed to open communication, share and create change through parenting, awareness, inclusion and advocacy. Over the years people have encouraged me to use my voice and experiences with my daughter to help others with or without disabilities, or parents of children with disabilities. This blog is my way of doing just that. I hope you will find this site enjoyable, educational, helpful, and rewarding.
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Be a rainbow in someone else’s cloud. — Dr. Maya Angelou

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