You don’t prepare for the moment you realize something’s “wrong” with your child. No one expects that their joy from one of the happiest days of their lives will be overshadowed with pain. No one ever tells us, as parents of special children, that one of many the things we will find ourselves doing is grieving….a lot. When discovering our children have disabilities, what “normal” activities our kids will be unable to do, when our families are torn apart…we grieve.
Denial. Anger. Bargaining. Depression. Acceptance. The time we spend in each stage is as individual as our children.
Most people think of grief as it links to death. Devastating. An overwhelming sense of being alone and helpless, lost, regrets maybe, resentments possibly, guilt, anger, and the physical aching of pain twisting within our chests. Time doesn’t heal the loss or take it away, but it does give the opportunity to ease the pain.
Time allows for space from the loss; life continues, we manage to adjust without that loved one. Eventually, we remember them with fondness rather than overwhelming sadness. But what happens when you can’t “get away”? When there is no “space”? What happens when the loved one you’ve lost is sitting right in front of you? How do we manage this? Where does that grief cycle end for us? Does it end for us?
When our son was given his first diagnosed of cerebral palsy at 9 months old, our whole world came crashing down. We began mourning. We mourned the loss of the life we dreamed of, of the loss of the family we foresaw. We mourned the loss of all of his possibilities for a “normal” life – of his ever becoming a pilot or police officer.
We mourned his loss of having the world wide open for him.
It was a death of dreams.
“So I thought it was over. But I guess not. It’s funny how time passes and you think you are ‘okay’…Today I was broadsided by an unbearable wave of grief for my seven-year old son as he watched his friends choose teams for a relay race at his best friend’s birthday party. Before I knew it, I was crying”. - Stacey Linn
Grief comes around to hit me every now and again. When I let my guard down, when I go on with life, when I think I’m at my strongest and that we have our son all figured out. With every new diagnosis, each EEG, the majority of doctor’s appointments (and you know how many that can be), in IEP meetings, after this testing or that…it hits me like a sudden breeze, knocking me off my feet, taking the breath from my lungs and wrenching the tears from my heart.
So, while I’ve finally found myself at a point of acceptance for the journey J allows us to share with him, I’ve come to different kind of acceptance about grief.
I accept that among all the tired days and nights of the endlessness of the hyper-vigilance of his care, I know that I will grieve. I know it will come, and give myself the opportunity to do so. I give myself the permission to grieve.
…and I have come to accept that I will never truly finish grieving.
…and I couldn’t be happier, because I am simply thankful to have my special boy.
What do you think about your grieving?
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