Why We Exist
Simon was born with a multitude of concerns immediately from birth. Due to a lack of blood and oxygen to the brain, Simon was diagnosed with spastic quadriplegia Cerebral Palsy along with a seizure and pain disorder. This diagnosis was life alternating, not only for Simon, but his parents, Liz and Andre.
Many questions went unanswered as only time would tell how Simon’s disability would affect his quality of life and the typical milestones of childhood development.
The first few years were difficult for both Simon and his parents. Many days were spent attempting to sooth Simon through constant holding and physical contact and distractions in the form of music. As he was unable to communicate his needs, wants or desires, Simon’s parents were left wondering what was causing their little boy to cry all day. Between working and caring for medically fragile child, the family was soon overwhelmed and their role of parents transitioned into the role of full time caregivers.
Simon’s health needs increased in complexity as did the amount of daily medications, supplements and personal care. Simon soon had an exhaustive list of medical professionals from surgeons, specialists, nurses, and physiotherapists. Simon’s parents continued to adapt to their son’s ever changing medical needs and learned to manage complex medical regimes.
Simon was unable to tolerate the use of a wheelchair, sleep independently or leave the family home. Simon’s parents spent many days and nights holding and rocking him, trying to take away their son’s discomfort and pain. Mentally, physically, and emotionally the overall family unit began to crumble. They were alone and afraid of the unknown for their son and family.
On September 1, 2012 Liz and Andre made the toughest decision of their lives and choose to have Simon permanently placed in care. For parents to make a decision like this for their five year old son was heartbreaking. They did not know if they were doing the right thing.
And then there was a break in the clouds. His parents no longer needed to be Simon’s nurses and caretakers. They only had to be one thing, his mom and dad.
Over a number of months, a routine was developed and a plan was set in place and as Simon became familiar with his various caregivers and environment, positive changes started to occur. With support and guidance, Simon’s parents continued transitioning into their role of mom and dad. They no longer were required to monitor, manage and implement Simon’s complex medications and care routines. They were able to focus on their son, family, and rebuilding personal relationships. Soon the family unit began to flourish.
Simon excelled in a multitude of areas both developmentally and physically. Simon now uses his wheelchair on a daily basis, sleeps alone and tolerates new, loud and what would have been overwhelming environments, strengthening his independence. Simon started exploring the city and participated in many events outside the home like the Calgary Zoo and swimming.
A milestone achievement was accomplished when Simon successfully completed his first year of school, attending fulltime, five days a week. Simon continues to amaze his parents and family as he reaches goals and truly demonstrates the level of excellence one can achieve in life. Simon’s parents continue to be heavily involved in his personal growth and development through their daily visits to the home. Through laughter, cuddling, music, and participation in family activities, the family is now truly thriving. This cannot be more evident as Simon recently became a big brother and welcomed the newest member to the family, his sister, Stella.
Simon continues to teach each individual he comes into contact with that love, happiness, and joy goes hand in hand with a child with a development disability. He has excelled both developmentally, physically and emotionally and will continue to accomplish goals his parents never dreamed were possible for him.