Theo
(11)
Alberta
Theo’s life has been complex, reflecting the life of a warrior. Two days after he was born, he became my foster son on July 7, 2014. Other than being on the smaller percentile and jaundice, I saw a baby full of life and love. My love for Theo grew along with my admiration for his unrelenting gentleness, kindness, and eagerness to live a normal life despite his challenges. Partaking in years of physiotherapy to overcome some of his developmental delays – such as difficulty walking in the snow, walking up stairs, walking up hills, bike riding, and even running.
Every time someone looks at Theo, he has this huge smile, the type of smile you know is behind exploring a world full of possibilities. As Theo grew up, so did his love for others. He is eager to forgive, make others laugh, befriend everyone, and ensure everyone feels wanted. Theo has always wanted me to be close by, asking for hugs and snuggles every chance he gets.
As Theo got older and grew, his upper body and legs continued to weaken. As his foster mom, I felt there was little I could do for him; I was not his legal guardian. Therefore, I decided to work towards being his strongest advocate. Allowing my intuition and my 20-plus years of experience raising children with physical and cognitive needs to guide me to speak up on behalf of Theo. Refusing to accept “no” for an answer, I would network with professionals about Theo every chance I could. Unfortunately, I overlooked genetic testing because of my lack of awareness and knowledge of Muscular Dystrophy. Once I adopted Theo, we started our journey to find the missing pieces of his challenges. We would visit various specialists, paying 200.00 for each visit, looking for answers because we did not have medical coverage. Only when the school physiotherapist approached us we learned about genetic testing for Duchenne Muscular Dystrophy (DMD).
After getting approached by the school physiotherapist, we faced the challenge of convincing our pediatrician to test Theo genetically. We had to get the school physiotherapist to advocate on our behalf. Unaware and naive about the challenges faced by those living with DMD and their families, I eagerly awaited answers. What took 2-3 months felt much longer. I will never forget the day Theo received his DMD diagnosis, along with the meaning of his particular outframe exon deletion. Theo’s Neuroscience Specialist had to deliver the worst news any parent could hear. Her own eyes misled her stoic stature, knowing I was not prepared; no parent is prepared – your child has a disease that is terminal with no cure available. DMD is a disease that will continually rob him of his healthy, natural, mobile life, early and progressively until their final heartbeat.
After hearing words describing DMD, my life spiraled into what I describe as a time of living in despair. For months after, I struggled to find adequate oxygen, refused to acknowledge that there was no current cure, and was adamant to prove his doctors wrong - after all, humans make mistakes, a mantra on replay in my brain.
Like many other parents, I searched high and low for trials, for any glimpse of hope while combating waves of anger, despair, and loneliness. Paralleled in cycles of living in numbness, denial, and endless sleepless nights. I was submerged in overwhelming feelings of shame and guilt because I was his mom, and I couldn’t fix this; I couldn’t find adequate answers or trials available to Canadians. However, I never clung to hope in its entirety for fear of losing myself entirely. Slowly acknowledging but never accepting Theo’s fate, revisiting thoughts of not realizing certain milestones of Theo’s. As time unfolded, I started to climb out of that darkness, deciding to be as present as I could so that I could be there for him as his jog progressed to a slow walk maintained by a DMD gate, to frequent falls, increased pain, leading to becoming non-mobile and in a fulltime wheelchair, needing lifts and transfers, help toileting and bathing, and becoming fracture prone – breaking his femur.
Although Theo’s story is complicated and full of challenges, we are not unique in the path we are heading, given the experiences and barricades we face, such as the financial burdens impacted by having such a progressive disease. Including Theo’s medical expenses, which start at an average of 300,000. 00 for the necessities for day-to-day living. That is Theo, and I’s current expense, which encompasses bath lifts commode, manual wheelchairs (maintenance for growth), electric wheelchair, hoist for transfers in and out of bed, ceiling lifts to go up and down stairs and into a bath, hospital bed and pressure point release mattress, CPAP machine, garage lift, and accessible van (still working towards). More equipment will be needed as time proceeds and his body declines. The government’s medical programs cover only a tiny portion of these costs. Non are covered under Children and Family services for adoptive parents. Affordability is an ongoing challenge faced by families like mine, needing to search out and piece together third-party funding because the cost is so high that not any one organization will commit to its cost, just so a family can have a form of quality in their lives.
Theo's story continues with a boy finding moments in his life to love and share his inspirational smile and humour. Fill his time with friends and family with laughter and pranks. Despite his natural ability to be happy and full of laughter, he does experience heavy emotional days when faced with a lack of autonomy.
| However, his resilience, hope and sight set on waiting for a cure keep his spirits up. Theo loves being around people, sharing stories, finding meaning in things, gaming, legos, snuggling, and taking every opportunity to experience thrill-seeking rides. Often talking of dreams to dance and learn to play hockey. Living life to his full capabilities – knowing the road to a cure is through the storm. |  |
We want to share our experiences to promote awareness of the various factors that affect a child and family with DMD. Motivating research into finding a cure, advocating for more efficient funding to cover equipment costs and individuals’ unique needs. As we continue celebrating the small wins, we would love to unite communities, bridging the gap between accessibility and exclusion. Honouring those DMD warriors before us who paved the path to putting DMD on the map for research and accessible services. Bringing insight into finding those moments and opportunities to build memories and create the quality of life.
Reflecting back on our journey here, holding insight for the future, I would share the wisdom I learned along the way with other families like mine.
Regardless of how complex and impossible your current circumstances are and the road ahead. Find, engage, and ritualize a self-care regimen. Irrespective of where your journey leads you – your son will need you at your best along the way. You will need to learn to love and heal yourself along the way. For me, I chose fitness because my 120lbs plus son needed me to piggyback him in and out of bed, van, wheelchair and toilet, as well as up and down the stairs for almost 2 years before third-party funding became available to us. Fitness also promoted me to live a healthy lifestyle, supporting my mental health and providing an avenue to destress.
Also, do one thing for just yourself. Whether artistic, learning, socializing, or practicing mindfulness – because the rewards keep us going, the light in a dark moment. Our children want to see us happy. That was my education; no matter how often people saw me drowning in challenges and climbing new mountains, advising me to put my education aside, I refused because this was for me. No one could take that away from me, and in return, I became employable in a profession. Achieving my passion by keeping my eye on the goal and advocating for change for people like us keeps me committed to my path – studying everything I need to know to create the momentum for change in the accessible and vulnerable sectors. Navigating my way and being steadfast in building a better, less lonely community.
