Does Grieving End for Parents of Children With Special Needs?

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.

Holding Hands with my Special Boy

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?

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

12 Responses to Does Grieving End for Parents of Children With Special Needs?

  1. Yvonne says:

    Beautiful

  2. Y'vonne says:

    Im in a bit of a grieving phase as well but different. My boys are amazing blessings but I always envisioned that large family at holiday events with there families and successful college graduates. Iapthough I may have that one day I’m sad because I’m at the end of my child rearing years and can’t physically have any more and with one neuro typical kid the dream is just much different now makes me thankful for what I have but sad at the same time. Part of this is associated to both health challenges and fertility struggles

    • Gina @SpecialHappens says:

      There again, another form of grieving. I totally get that. The large family is something I wanted too. Sometimes I placate myself by saying it’s “as if” we have a large family because of the chaos we live daily. Not sure that’s the same thing as a large family…but I guess it’s just as loud?

  3. Valeska says:

    I grieve everyday for different reasons, and much like you I too have come to peace with the fact that it will never go away… different phases in life will bring different depths of grieving. It’s a fact that we have to live with, with the occasional denial of course ;)

    • Gina @SpecialHappens says:

      Thanks Valeska. Sometimes when I see it coming I try to push it off for as long as possible…then it breaks me when I least expect it…or when the weight is just too great. You’re right too…denial always comes back around…sometimes it’s the best protection we have!

  4. Gina, thanks for this thoughtful post. My son’s birthday is tomorrow. He was diagnosed the morning after his birth. With each new year we celebrate, there is always still that sense of grieving for me. I often hate returning to that place of mourning, but I know it’s just part of the package.

  5. Gina this was a beautiful post. Thank you so much for sharing your feelings.

  6. Marie says:

    Beautiful post. It is hard to hear there is something “wrong” with your child.

  7. breezy says:

    thanks for your thoughts. find this while struggling over whether or not i should still be grieving. my son had a severe head injury at 2 yo, he is 20 this year young people in our circles are pairing off and getting married. though i am happy for them it is a reminder of yet another thong my son will never do.

  8. [...] How we react to disability is as unique as our children are. Some issues are known at birth or a few days later. Still others hit out of the blue a few months or a couple of years down the road. These blows seem harder, the child you had is not the same child. Not only do you loose the dream of who your child would become, you actually watch a child regress or loose the skills they already had. The loss can be confusing to the rest of the family and your friends as well. Comments made during this time can also be hurtful. I had people tell me I had not “lost” John he was still there and yet, the John we knew and loved was most defiantly not there anymore. Our son, the one who sang the Barney song and loved animals, was not there at all. [...]

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