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Loving a Special Needs Child: My Journey with Bernice

Jan 24, 2023 | 0 comments

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Jan 24, 2023 | Essays | 0 comments

Bernard and Lucy Adams adopted two year old, Bernice all the way from china. Having lived next door to them for a large portion of my life, and having baby sat for them their two older children; Bernice was often left in my care.  The journey of caring for Bernice was far from easy, in fact at sixteen I found it quite challenging. Bernice is a special needs child, whose diagnosis was unfortunately delayed until her arrival to the Adams family.  At the time, Bernice weighed less than twelve pounds. Completely underweight, she had no appetite for food; and I found that I always dreaded being given the duty to feed her. Even a little task such as a drink of cola or juice would soon turn into a mountain of duties.  She would often fall asleep in the middle of the feeding, or simply refuse to keep her food in the mouth.
I recall one particularly frightening experience, when the Adams went for an office party. They called upon me to sit with Bernice. I had considered rejecting the opportunity, but I need a new phone and at sixteen a new phone seemed like a life line. I reported to the Adams home, whereupon Lucy proceeded to give me my duties. Among them was the duty to bath Bernice. I filled the tub with warm water and placed Bernice in the tub. However, she soon started to cry and struggle refusing to sit in the tub.  Frustrated, I was forced to get her out of the tub but she proceeded to cry inconsolably for an hour. As a young teenager, I panicked and called Lucy. One week later Bernice was in a full body cast.  E could barely touch her or hug her; her bones seemed to break at even the slightest touch.
While with the other children, we often spoke of and revolved around schedules, feeding and bed times; with Bernice things were different from the beginning. Our discussions with the Adams often revolved around treatments, surgeries and the drugs which she was to take. I could not carry Bernice from one room to another, but often had to settle for sitting her on my lap covered in duvets to protect her casts and fragile bones. With the older Adams children, baby sitting was fun and exciting an easy way to earn extra money. With Bernice, the duty became scary, challenging and something that my mother often had to force me into. Bernice seemed like more of a plague sent to torment my young teenage mind. However, as I cared for her, my hear began to grow fonder of the fragile little girl. When she was not in pain Bernice could smile brightly and light up even the heaviest of hearts. I wrote my social studies report on the care afforded to special children. During the research I met more parents and even young siblings most of them my age, whose passion lay in caring for their sick child.
I grew closer to Bernice, even going as far as to baby sit her while she was in hospital so that her parents could have a break. The Mississauga children’s hospital became like a second home not just for the Adams but also to me. We cheered her progress and got devastated when she took some steps back. We invented ways to keep her cheerful, structured home projects that would ensure the safety of Bernice. Bernice was so fragile, that her parents could not afford to invite friends and neighbors who might mistakenly pick her up and therefore injure her.
I can honestly state that during the first year of Bernice coming into my life, love and even affection was hard from my side. All I did was my duty, the minimum expected from me. Bernice was just a simple way to earn extra money. But by the time she was diagnosed with osteogenesis imperfect, Bernice had become the center of my life. While my friends spent time visiting each other, or shopping in malls I spent my time with the Adams either in hospital or at home. A few years later, Bernice and her family moved to another state to seek better medical care for her.  Bundled in heavy duvets she smiled and waved at me on the drive way. As I watched their car disappear, I realized that Bernice had taught me one of the most vital lessons in life: sometimes those who are not so easy to love need that love most.
Bernice has moved on, perhaps to a better more secure and comfortable place. She may not have hugged those who loved her a lot. Hugs and kisses were considered a special gift, which was so rare. This is why loving her was slightly difficult. She was not a playful girl; we never played dress up because she could be easily injured. We never baked or played with doll houses, yet Bernice continues to be the biggest influence in my life.

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