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Grieving and finding support after my son’s devastating diagnosis

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Denial. Anger. Bargaining. Depression. Acceptance. As a former Victim Advocate, I knew this cycle well, but I only linked it to death. In death, there’s time. Time doesn’t heal the loss, but it does give the opportunity to ease the pain. So what happens there’s no space from the loss? When the loved one you’ve lost is still sitting right in front of you, living and breathing? Where does that cycle end for me? Does it end for me?

When our son was diagnosed with Cerebral Palsy at nine months old, our whole world came crashing down. We began mourning the loss of the life we thought we’d have with and for our family. We mourned the loss of his possibility for a “normal” life. It was the death of dreams. I began the cycle.

It would take five years of bouncing around, stuck in the cycle of denial, anger, bargaining, depression, and back to denial again before I finally hit my major acceptance; major because there are times of mini-grief. It hits me every now and again. When I let my guard down, I go on with life, when I think I’m at my strongest. It hits me like a sudden breeze, knocking me off my feet, taking the breath from my lungs, the tears wrenched from my heart. Each time he has a seizure, or there’s a new diagnosis (Cerebral Palsy, Epileptic, ADHD, Sensory Integration Dysfunction, Developmentally Disabled, ASD Features), or when I watch him with friends, I can start grieving again.

So, now I also accept that among all the tired days and nights of the endlessness of his care, I will grieve. It will come and it won’t stop. I have found ways to get by in giving myself permission to grieve. I have come to accept that I will never truly finish grieving. Getting to this place in this unforeseen life wasn’t easy. Here are a few things I did that any parent who is grieving can do:

1. Develop a support system. Talk with your spouse, your parents, a friend, a neighbor. Talk to anyone who can experience things with you.
2. Do research and educate yourself. Books, the internet, professionals, parents.
3. Visit forums or support groups like Cafe Mom,  Google groups, support groups like Parent to Parent which will match you with a parent mentor with similar lived experience. 
4. Read blogs by parents of special needs children (search for special needs + blogs). See that you’re not the only person going through this. Or start your own blog or journal. Grabbing a notebook and writing your thoughts can be cathartic.
5. Become an advocate for your child. No one will know your child better than you, and quite frankly, no one else is going to do it. YOU need to be the one to help your child be the best (s)he can be.

Finally, accept that you will have highs and lows; you will cry, laugh and throw things. Give yourself the latitude to be human. This is one of the most difficult things in life to be handed to you. Grieve over what you have lost, over what your child has lost, but never fail to see the light in your child’s eyes.

Gina St. Aubin is a former victim advocate and present day stay-at-home mother to three children, one with special needs. She writes at her blog Special Happens, a resource and blog full of inspiration, information and insight, written primarily by contributors with children with special needs.

Mile High Mamas
Author: Mile High Mamas

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