A day in the life…

A day in the life…

“The kids will be awake soon. I’ve got twenty minutes to shower and get myself together.”

It’s the first thing Shanna thinks to herself every morning when that alarm goes off. Probably sounds like anyone with kids right? Shanna admits that her family’s life likely doesn’t seem that much different than anyone else.

I was able to chat with Shanna recently about day to day life caring for Addison (9) and Kadence (12) who were both diagnosed with a rare genetic condition, Friedreich’s Ataxia, in the spring of 2015. While it’s true there are many parallels to everyday family life… there are also lots of hurdles.

“My ultimate priority every morning is to be ready for the girls. It’s funny looking back at how much of my own daily routine I’ve altered to accommodate this new life.” Shanna’s referring to her new morning routine which now involves a quick shower and a ponytail.

“I usually wake Addison up first, mornings are hard for her, she needs lots of time because she isn’t able to walk first thing. We usually start with me massaging her limbs and then we pick out her clothes and some days (the bad days) she needs help getting dressed. I will carry Addy to the bathroom where I brush her teeth and do her hair and she takes her meds. Kadence is next although she is much more independent, she really likes to be self-sufficient and has altered her own morning routine so she can get ready by herself.”

“It is important for people to know that they always wake up happy and smiling and are really happy kids.”

Once everyone is “polished” the family heads downstairs, “right now in our house that means I’m carrying Addy down the stairs. I usually sit her on the couch so she can do more stretching and get her braces on. Addy’s GI system takes a while to “wake up” as well so she generally will eat her breakfast a little later in the morning at school.” Both girls are gluten and dairy free and that has been a learning process. Kadence usually has something simple like gluten free cereal with almond milk or eggs with gluten free toast.

“The hardest part of the day used to be the drive to school – we’d all cry together when I dropped them off, I hated leaving them and they hated it too. It took some time to learn to ask for help but that has been the biggest part of making the day to day stuff easier.” Now Shanna has a service from the school come and get the girls, “we get them out to the car, Addy uses a wheelchair outside of the house and they are off to school for the day.” The girls get to school about 20 min early and are greeted by an aide, this means they can get safely in and situated in classrooms before the hallways fill with students.

The girls don’t carry books or backpacks from class to class because there are mobility issues associated with FA. Instead, they have everything they need in each room. This was tough at first as both girls struggle with the reality of their condition “Kadence is the most determined girl in the world – it is really important to her to maintain her independence and so we support her while trying to keep her safe.” In addition to the support of both aides and the teaching faculty, the girls also have amazing friends. “They are protective, patient, supportive and understanding – their parents should all be very proud!”

The service brings the girls home after school and this is another time during the day where extra help has been incredible. “I have several friends who alternate days coming to stay with the girls (Colleen, Joanne and Jamie!). They stay with them for about an hour and a half until I’m home from work. Our neighbor friends Hailey and Kira are also generally over, we’re going to miss that the most when we move!” One of the things that has changed for the girls is the after school routine. While they would love to join their friends in the park or playing outside, they can’t. “This year they are both too scared to get on their bikes. It’s simple to other people but to us it is another reality about our lives and the change is constant.”

Like most kids Kadence and Addison have extra curricular activities in the evenings but that is where the similarity ends. “We have activities every day – weekends too!” Eye therapy, physiotherapy, myofascial therapy (for swallowing and speech), massages and chiropractors. The girls both play piano, swim and do therapeutic horseback riding – which they love! Don’t forget about homework, that is a must and it happens every night. “Addy can’t use a writing utensil and so she works with an aide at school and me at home. She dictates and I write, she is very intelligent an insists that the work is her own, even though its my writing.”

In terms of dinner, the crockpot is king! “Our family fav is pretty simple BBQ chicken, rice, and broccoli. I’m lucky because the girls love veggies, so we eat a ton of them in our house! We try to multi-task with doing therapies and stretching while I’m making dinner.” Like most kids a nighttime snack is a must – usually it’s a smoothie packed with all the vitamins and supplements the girls need – like omegas and vitamin C. “Evenings tend to end early, Addison gets tired pretty quickly so after snack its usually off to bed!”

“My favourite part of the day are the goodnights. I carry Addy upstairs and we all go into her room and we all lay on the bed together. We talk about our days, what we’re thankful for, and say our prayers, that perspective is so important for all of us. We thank god for everything we have, we ask for healing whatever that might look like.”

“I love listening to my girl’s prayers.”

The new house will mean that the girls both get to reclaim their independence and maintain their dignity as they grow up. “They’ll be able to move around the house from room to room with ease, Addy won’t need me to carry her upstairs every time she wants to go to her room, she’ll be able to bathe and get to the bathroom in the middle of the night by herself.” In terms of the new house Shanna says “I’d love for life to be more simple, a bit easier, we love our current house, but it’s not realistic for us. Our family needs something that gives us more security, and safety. The girls don’t want me by their side all the time, this new home will give us freedom and possibilities.”

-Shauna Wilkinson

To donate, visit GoFundMe. To learn more, visit Ampossible.org.

 

 

 

How Can I Help?

How Can I Help?

It may be the most common phrase we hear. When friends, family and complete strangers hear about our journey the first thing everyone asks is “How can I help?”

Here is how you can help:

Donate services, gift cards, money. Everything helps. We’re simply working to ensure we can access the resources that our girls need to live as comfortable as possible, and to live a full and happy life.

The costs associated with having two children affected by Freidriech’s Ataxia are overwhelming. The girls need equipment (wheelchairs, walkers, glasses, braces) to be able to do activities that other kids do. They need to participate in activities (such as swimming, equine therapy, yoga) to keep their muscles engaged. They need ongoing therapy, some of them on a weekly basis (physical, massage, swallowing clinics). The eye therapy alone comes with a $2,500 price tag. Per child. Per year. These are all required therapies that the girls need to manage their FA, which are over and above what Alberta Health Care covers.

In addition, we are trying to renovate a house for the girls. A house that they need because their current home is physically unsafe for them and will only get worse as their mobility declines. While we have made progress, we are still so far from achieving our goal.

Nobody likes to ask for help. Especially now, at a time that our province has been hit so hard. But these little girls truly deserve our support. Even if your support means making a phone call to someone you know that may want to provide services or supplies to renovate the new home.

I believe that when times get tough, people shine. You’ve shown us such deep care, compassion and what it means to be a friend. Since the diagnosis last year, there has been an outpouring of support from creative friends with big hearts. The following is a list of fundraisers that have been organized by groups and businesses to support our cause:

Hairbenders Salon – famously kicked off our giving campaign with a cut-a-thon.
The Grundies – a band in Nova Scotia – put together a fundraiser for the girls. Even JD Fortune from INXS popped by to sing a little diddy. (Hint, we may not have not heard the last of the Grundies)
A Beaconsfield, Quebec Slo-pitch team made their wind-up celebration into a fundraiser.
The Chive heard our story and held a YYC Meetup.
The staff at Airdrie Home Depot did employee raffles and a pot luck dinner. Then Home Depot matched employee donations using the “Homer Fund”.
Easy Peasy Meals in Montreal, just wrapped up a fundraiser, donating the proceeds from specific deserts to our cause.
Cusp Dental donated a portion of teeth whitening services to our cause.

Every. Nickel. Counts. Are you part of a small business or group that would like to help? We do still need your support. For help organizing a fundraiser please contact volunteer@ampossible.ca.

Lastly, in the case that you simply have a spare $20 (or more!?), our GoFundMe account could use some lovin’. 🙂

A Pile of Thank you’s

A Pile of Thank you’s

This weekend was amaze-balls. The house was demo’d by a group of volunteers and it’s ready for Rock Creek Builders to get started. But before we begin, we need to take the time to thank the following folks that got us to this place:

  • Gentlemen Plumbers – First things first. We had to fix up a couple things in Shanna’s current house. These fine Gentlemen (Plumbers) saved the day.
  • Home Alyze – donated a Home Inspection.
  • Brent Fraser w/ Rock Creek Builders – I know, I know. We’ve mentioned them already but seriously, they are managing the entire project.
  • Allan Warnock – Lawyer – waived his fees for the paperwork on the house purchase
  • Jennifer Taylor w/ Nuvo Interiors – Interior Design. (She’s already met with the girls and we’re gonna sum up the style in one word: unicorns.)
  • Airdrie Waste Management – donation of the garbage bins for demo.
  • Graham from Prairie Woodlands – for swiftly removing the trees so we can build our ramps.

    And those that gave up their weekend to donate some good ol’ elbow grease:

Margrete Lambden
Terry Lambden
Mark Sitter
Meaghan Kernaghan
Dave Kernaghan
George Neufeld
Elliot Dorion
Gregg Jones
Ronalee Jones
Laurena Pollock
James Plishka
Michelle Carre
Angie Tennison
Seth Tennison
Simon Benoit
Kris Sitter
Karen Nichol
Dean Nichol
Travis Nichol
Joshua Nichol
Kelly Boudreau
Cory Balint

I’ve said it before, I’ll say it again. When you are looking these services, please check out these big-hearted folks first.

xo

Amanda Balint