Over three hundred people came to say good-bye to my son….
Justin was six months away from his 18th birthday and his graduation. Yet he was embarking on a journey that we all must take, a journey from this life, through the veil of death, into the next — a graduation of sorts.
Justin was a special needs child. Yet his “disability” gave him a special ability to live life beyond the way most of us live — with joy and love. He often reached out to gently touch those who sat next to him — to communicate connection with another soul in a way he couldn’t verbally.
His severe developmental delay meant he had to wear diapers throughout his life, which was an added burden on us, his teachers and caregivers.
Justin had acute hypotonia which meant, that while he had control of his muscles, his muscular strength was very weak. Thus he required a wheelchair or a stroller all his life.
He was also severely verbally challenged; while he could “speak”, his speech was incomprehensible, except for a few “words” that we who cared for him could understand. A Picture Exchange Communication System (PECS) was developed to aid us in communicating with him. PECS enabled Justin to tell us when he was hungry, what music he wanted to listen to, and what activity he wanted to engage in.
Yet to really “hear” his voice required spending time with him, simply sitting with him, allowing him to connect with you and you with him. Through those times of closeness, my wife, Diane, began to learn more about not just hearing Justin’s voice, but also sensing and hearing the voice of God.
Justin also wasn’t my biological son; as a father I didn’t go through the turmoil and grief of learning that my hopes and aspirations for my son would be muted by disability. On the contrary, Justin’s special needs were already evident when I chose to marry his mother. In choosing Diane, I was also choosing Justin with all his “disabilities”. And like Robert Frost’s traveller: “that has made all the difference”. When we choose to love, especially in the face of its burden, we are rewarded with love.
The title of this post was a newspaper headline that caught my eye as I walked to my car. I didn’t have time to read the article, but it speaks of grief: whether a loss of friendship through death or conflict. For us, Justin’s “graduation” as I like to call it, came after a ten day battle with sinusitis and pneumonia that quickly turned into acute lung failure when his infection entered his blood system. It was a heart-wrenching time as we watched our son lying comatose in a hospital bed, kept alive by a battery of machines and a recipe of drugs. Throughout those days, as we visited Justin, we relied heavily upon God to uphold and carry us, and gently prepare us for his death.
In the two years following his death, my wife wrote her first book: ALIVE and WELL. It is the story of a mother of a special needs child — her journey through life and death, rejection and restoration, joy and sorrow. Her website is www.dianeknight.com. She is currently working on her second book about learning to hear the “voice” of God.
Over 300 people came to say good-bye to my son who in the criteria of our culture never accomplished anything, nor was productive; in fact he was a burden. Yet, his “burdensome, unproductive” short life changed the world of over 300 people so much that they gave up work, school and other pressing things in their lives so they could say good-bye.
Today, six years after his death, we still miss Justin; waves of grief still come and go when they please, and often when we least expect them. Seeing the newspaper headline brought a vision of Justin’s hospital bed, then his casket, then his grave — all in the five seconds it took to walk past the newspaper. Death stays with us, even when life moves on — like a shadow we can’t escape.
We have all lost our “best friend” today — something or someone who has impacted our lives in such a way that they changed our world. It may be a friend from school who we’ve “lost” over time. Perhaps it’s a child lost through miscarriage; or a longed-for-child never conceived due to infertility. Maybe it is a spouse, gone either through death or divorce. Perhaps it is a dream we’ve pursued with vigour, yet never saw fulfilled.
All of us have experienced loss. All of us grieve.
No one finds enjoyment in grief. But to shun it with a tough facade, to bury it with denial, or be ashamed of it, is unhealthy. Just as scars are a sign of healing, grief is a sign of love. We’ve lost someone we cared deeply for. We allowed our world to be changed by that person and we feel the impact of their loss.
The alternative to grief is far worse. It is never giving ourselves to anyone. While this appears to protect ourselves from grief, it is really robbing ourselves of life, of love, of hope. It robs our world of the changes that another can bring. By choosing to love, to engage in another’s life, we open ourselves up to the riches of their love, but we also expose ourselves to the risk of grief. This is real life!
What “best friend” have you lost? What grief are you experiencing? Instead of reflecting on the loss, share with us the joys, rewards and memories you received by leaving a comment so we can enjoy your “best friend” too.
