Share This Post

Special Needs

The Acceptance of Grief After My Child’s Devastating Diagnosis

The Acceptance of Grief After My Child’s Devastating Diagnosis

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 a 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 like Special Happens, Cafe Mom,  Google Groups.
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. The site is dedicated to sharing experiences and resources while developing a community of support for families of children with special needs.

Mile High Mamas
Author: Mile High Mamas

Share This Post

12 Comments

  1. Beautifully written, moving, and raw. Your son is blessed to have you as his mother. Wishing you much joy and happiness amongst the grief.

  2. Gina, I really love how this post turned out. No one would wish this on their child but your honesty with coping with it gives me hope that if I am ever in the situation, there is always a silver lining. You are truly an inspiration.

  3. What a great post! Thank you for sharing it.

    ~Momma
    http://thecasualperfectionist.com

  4. Thank you both for your comments.

    I hope to gues post more for Mile High Mamas.

  5. Gina,

    Great post. I relate easily to what your struggles are and your journey having a child with special needs.

    I have a 13 year old son that was born with partial corpus callosum.

    Our struggles get bigger each year as he’s in middle school. It has been a frustrating few years fighting bullying and ensuring that he’s getting the support that he’s supposed to receive.

    http://onemomsopinion.blogspot.com/

  6. One Mom’s Opinion~

    It does seem that the struggles never end and continue to grow as our special kids grow. My heart truly aches for my son and every other special needs kid and family out there.

    Thinking of the bullying to come makes me just as breathless as the continued grief. I’m sorry for what you and your son are going through. I just wish it could all be ‘better’…knowing it can’t, I then can only try to be a strength for my son and for other parents out there.

    Your son is lucky to have you.

  7. Gina,

    The post was absolutely beautiful. Your honesty was heartwrenching and inspiring. Thank you for your bravery and sharing part of your story with us! I look forward to reading your blog!!

    http://www.coloradodentons.blogspot.com/

  8. Melissa D~

    Thank you for taking the time to read this. All of us, all mothers, need understanding of our individual plights.

    Gina.

  9. Gina,
    Thanks for writing this.

    I am the parent of a son w. similar issues and as he enters his teen years we’re adding diagnosis and watching the list of things he will not be able to do grow.

    I sometimes feel frustrated with myself for continuing to struggle with feelings of grief, resentment and anger. My son is 13, I think to myself, I really should be over this by now.

    But while I cope and my son has brought me incredible joy I still get overwhelmed by grief periodically. Hearing that I’m not the only one who can’t move permanently beyond grief helps.

    Anita

  10. Anita~

    I’m so glad this helps. The funny / not so funny thing is that I’m starting another mini grief cycle now as my son is developing more aggressive behaviors. It seems every corner we turn another struggle eases its way into our lives.

    It comes down to the constant change that our kids go through. The changes of any child, then their disability changes on top…or what emerges from each NT development. It’s incredibly difficult for us, for them; it’s incredibly difficult for anyone without our similar experiences to understand completely.

    Most important for us when it comes to this, is the acceptance that we will continue to go through it. We don’t have to come to grips with our children’s difficulties on a finality basis… nor should anyone expect us to. You’re allowed to have feelings of grief, resentment and anger.

    All we have to do is love our children. Hang in there. Know that he is thankful for your love and support.

    Gina.

  11. sober swarms Delphinus assimilations playwright?wither fawned

  12. Thank you for the wonderful insights!!

Leave a Reply