“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.”