I, Elin, am the mother of three amazing adolescent and grown-up girls. Our youngest child in the family, Sofie, is 15 years old and will start in 10th grade this autumn. Sofie has dyskinetic CP (level 5) and needs support most of the time. She communicates with her eyes and is cognitively age appropriate. This story provides an insight into a family life that has some additional challenges, and especially in this Covid-19 time.
When Sofie was in 7th grade, she became critically ill due to a carnivorous bacterium and had to amputate her left arm. As she has never been able to use her hands willingly, Sofie has never missed her arm to a large extent. A few months after the amputation she was called to the hospital’s outpatient clinic to assess prosthesis, but in her case it was out of the question because she has too many involuntary movements in her body for it to be comfortable.
The responsible doctor wrote in the report: «An incredibly cheerful girl who is strikingly unaffected by having removed the entire upper extremity”. And that is a correct description of our girl. Despite her limitations, Sofie’s mood is always top notch.
Her attitude and her smile
We constantly find that people around us, who may not know her or us very well, may be surprised by how smiling and cheerful she is. “She is so brilliant”. “She is so brave – after all she has been through”. “What a fantastic strength she shows”.
Well-meaning sentences, and good words, but not to forget that the life Sofie lives, with the challenges it represents, is the life Sofie knows. She has nothing else to compare with.
Just as someone born blind does not have the prerequisite for knowing how a person who sees perceives colours, Sofie has no prerequisites for knowing how life could have been as able-bodied. It is thoughts we “able-bodied” usually have because we compare her life with our experiences. She is born with the body she has and with the challenges it brings, and it is important not to forget.
Proper facilitation and adaptation is essential for participation in activities
The important thing is that we manage to adapt to everyday life so Sofie can participate in activities on par with others.
She runs sitski with us, she can bowl with a ball ramp, and she can make delicious muffins for homework in “cooking lesson”. The difference is that Sofie needs support to carry out these activities.
Sofie has personal assistance most of the day – at home, at school, during leisure time and at night. She sleeps with CPAP, which is a small machine that increases the air pressure in the airways when sleeping. This requires an awake night watch because she is not able to remove the mask herself.
Sofie’s personal assistants have become a natural part of our daily lives, and without them, the Covid-19 lock down would have been a whole different story for us. We, the parents, changed the dining table and the TV room into home offices, and Sofie and her other sister, finishing her last year at high school, did homeschooling in their respective rooms.
A different summer
This spring was a strange time for all of us, and with self-imposed isolation, the days have been calmer than usual.
One thing you learn as a parent of a child with special needs and great necessity of adaptation – you become a master of long-term planning! With a father who is half Icelandic and with an adapted cabin in Iceland, all summer holidays have mostly been booked in January.
Sofie was supposed to have a surgery in her spine (due to scoliosis) in April, but the arrival of Covid-19, postponed all surgeries. Now a new surgery is scheduled for September – and we are crossing our fingers and hoping everything will go as planned.
The rehabilitation after a spinal surgery takes time, so for the first time in 20 years we didn’t plan anything for the summer. Taking the current situation into account, this was okay.
So now we approach holiday time without any plans! All we know is that we cannot drive more than 1.5-2 hours away from home, due to Sofie’s scoliosis. She needs frequent change of position to prevent pain.
I believe that both our original plan to stay at home, and what home isolation during Covid-19 has taught us, have resulted in less stress related to “what to do” during the holiday. It is so much fun looking forward to holidays, to do other things and meet new people. But it is also a useful reminder that it is nice to “just” stay home.
Many families in the same situations as us cannot travel far, they cannot plan holidays, because the child’s health is not compatible with this. And I think that sometimes it can be good for us to be “forced” to find our own “happy moments” at home in our own house and neighbourhood.
One of my «happy moments» is when my girls pulled a prank on me. They tricked me into thinking that Sofie had fallen out of her wheelchair after some heavy dancing in the living room, and the scene was of course filmed! Sofie’s oldest sister lifted her out of the wheelchair and placed her on the floor and then dropped the chair with a bang. “Mom, mom, come quickly!” My first thought when I saw her lying on the floor was “Oh no, her spine and the surgery coming up”! And guess what! The girls laughed their heads off!
Postponed surgery also means postponed communion. The priest is service-orientated, “the door is high, and the gate is wide”, so communion will be when it suits us. We are very grateful for that. Like the long-term planner I am, the napkins are ready, the menu is set, and the Icelandic national costume is ready to be used by our youngest girl.
But first – holiday and time off, then spinal surgery and straight spine!
Innowalk – a possible assistive device to use after surgery?
Sofie got to try the Innowalk as a little girl. She struggled with poor head and upper body control and at that time it was challenging to accommodate this. When we finally found the perfect solution, the try-out period was challenged by the insurance company’s requirements for duration in the device per day. At that time, it was hard to manage these demands due to our full-time work, exhausted children after a long day at school and kindergarten, and alternating daily capacity. Unfortuna tely, this destroyed the trial period.
Perhaps the Innowalk may again be applicable once Sofie has been through the spinal surgery and her spine and hips again are pain free? Because – although Sofie doesn’t know what life is like on two legs, she appreciates getting into a standing position.