These pictures are priceless to the parents, avid hockey fans.
Some of these players will never truly know the value
of the time spent with these children.
Sunday Scribblings prompt this week is " Lost"
Lost is an understatement to how I felt this week when I heard my friend’s second child passed away within twenty two months. What do you say to a woman standing on the bluff of dismay? Usually a chatterbox, I was silenced.
Albeit shocked about the timing, part of me wasn’t surprised given the history of the past year. Too many bouts in the hospital with difficulty breathing, elevated seizures then a feeding tube.Hints I chose to deny.
Every morning my friend took her son to preschool where he sat in his special chair with all the other special needs children. Such a happy little guy with limited mobility, dependent on everyone, he seemed to smile a lot, much like his parents.I loved it when he giggled. Attending school was risky, with classmates carrying normal childhood viruses he could easily contract. But it was such a joy for him being with other kids, giving him a semblance of normalcy.
There was a time he could roll, push buttons with his fists to make music exude from his toys. Occupying himself with childhood sounds in a close to normal way. However this last year there were many set backs as his health deteriorated. Meanwhile his parents monitored every move. Aware of every nuance preceding a seizure, mother policed his hospital care. She was her darling boy’s voice. Knowing when he was uncomfortable, angry, or unhappy. Just like any good mother knows.
My friends nonchalant way of preparing food and medication to be syringed every few hours without skipping a beat amazed me. Never a complaint over the laborious chore of feeding him, the years before the feeding tube was inserted. Attending to every need, sound, bathing, changing and carrying around a five years old without a peep of objection. It became very matter of fact, it was her normal. She cuddled, carted him around with all of his apparatus, spoke to him with love, jesting with him as though he understood each and every word. It’s impossible to know for sure he didn’t.
My friend did her best under very difficult circumstances. It was rare for her to take respite care for her son.On occasion her mother stepped in to give her a reprieve, she also had a sitter who was trained to care for disabled children on an hour to hour basis. Lately it was only when hospital staff convinced her, with assurance he would have twenty four hour hospice care could she even consider leaving his side. During his hospital stays she spent every moment overseeing his care, sleeping there for days on end. I wonder if anyone realizes how difficult it is to have a disabled child. All the sleepless nights concerned over each breath. I know I didn't.
With each bout of illness came fear and worry of losing this adorable little child. So deeply loved by his parents. So what do you say to someone who has already lost a ten month old daughter less than two years ago, now a five year old? These children with an undiagnosed genetic disorder left their parents,friends and family totally distraught.The fact that he rallied and seemed to be doing so well the previous month made things all the more startling.
Instead of me, woman of many words finding the right sentences to comfort my friend in her days of need. Guess what, we cried together, and she so lovingly consoled me with her tender words. My dear friend of over twenty years, shared with me in detail, the last hours of her sons life.
Twelve loving people surrounded his bed, read him stories, sang his favorite songs as he laid there. His parents assured him of their love for him, what a precious gift he was to them and everyone who knew him. How his courage and strength amazed them, how honored and proud they were to have him as their son, then they gently let him go.
When he passed the sun shone so brightly through the window, on the other side a bright rainbow appeared as though the heavens opened up to receive him. Everyone felt the passing of his little life as spiritual moment of beauty. Although the moments of grief are dark and the pain grueling, every so often my friend gets a wonderful wave of peace. And she knows it’s her son, saying “Mommy it’s okay, I’m at peace now!”