The Acceptance of Grief ~ The Long Version

Photo By: Honikum

(Please check out my post on Blogher)

I wrote a shorter version of this for a forum, but wanted to add the lengthier version here as it seemed an appropriate time and place, and since I’m starting a mini-cycle again.

The Acceptance of Grief:

Denial. Anger. Bargaining. Depression. Acceptance. As a former Victim Advocate, I knew this cycle well, but I only thought of it as it links to death. In death, there’s time. Time doesn’t heal the loss or take it away, but it does give the opportunity to ease the pain. Time puts a space from the loss, life continues, we manage to adjust our lives without that loved one. We eventually remember them with fondness rather than being overwhelmed with sadness.

So what happens when you can’t “get away” from it, when there’s no space from the loss? What happens 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? More importantly…does it end for me?

When our son was diagnosed with cerebral palsy at 9 months old, our whole world came crashing down. We began mourning. We mourned the loss of the life we thought we’d have with and for our family; most importantly, we mourned the loss of all of his possibilities for a “normal” life. We mourned his loss at ever being a pilot, police officer; we mourned his loss of having the world wide open for him. It was a death of dreams. I began the cycle.

I never realized - I never imagined that I would bumble around this cycle for 5 years before I finally hit my major acceptance; major because there are times that I continue to go through mini-grief cycles. I have come to learn that I, as all parents of special needs children, have a different kind of cycle. 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. It hits me like a sudden breeze. It will knock me off my feet, taking the breath from my lungs, the tears wrenched from my heart. In the Summer 2008 issue of “The Journey”, by Parent to Parent of Colorado Stacey Linn writes about how this happened to her.

“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”.

This is me, this is us all. It has hit me when I watch him play, in school meetings, when talking to a friends about having a girls night out, but especially when I’m given additional “bad news” about our son. Each time he has a seizure (the first one 6 days before our daughter was born), each time there’s a new diagnosis (Cerebral Palsy, Epileptic, ADHD, Sensory Integration Dysfunction, Developmentally Disabled, ASD Features) or a new medical procedure (Botox injections in his leg, casting, AFO-Orthotics). It can hit me the moment I think I’m done…but I’m never done.

So, I’ve come to another kind of acceptance. 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. I know it won’t stop. I have found ways to get by in giving myself the opportunity to do it, by giving myself permission. I have come to accept that I will never truly finish grieving. But I couldn’t be happier to have my special boy.

Getting to this function place in this unforeseen life wasn’t easy. The truth is that it took me 5 years to find my way to acceptance; that I bounced around like the pin-ball wizard, stuck in the cycle of denial, anger, bargaining, depression and back to denial again. I wasn’t immediately ready to have someone shove down my throat a reality that I will live with for the rest of my life.

In finding myself grieving, and knowing the differences in how I needed to go through it, there were a few things I found helpful. If you are grieving, or know someone who is, this may be helpful for you as well:

1. First and foremost, you need to have a support system of some kind. Talk with your spouse, your parents, a friend, a neighbor. Talk to anyone who will be in your lives for a lengthy period of time that can experience things with you. Keep them up-to-date on what’s going on medically, and physically and emotionally for you.

2. Do your research and educate yourself. I couldn’t sit and read a book. For me, there just wasn’t the time and my attention wouldn’t be held in a lengthy book. I’m a skimmer, so the internet is a great resource for me.

3. Visit forums. Forums like Mom Like Me, Mile High Mama’s: Special Needs Forum or Cafe Mom can be of immense help. There are also online groups at Google Groups or Yahoo! Groups. You can get advice and guidance from other parents who are going through the same turmoil as you; you can give ideas from what you’ve learned in your journey; and you can lose the sense of being alone on an island.

4. Find informative websites. 5 Minutes for Special Needs, Parent to Parent USA, PACER are just a few.

5. Find blogs by parents of special needs children (search for special needs + blogs). Read them. See that you’re not the only person and that it’s okay to have the mixed feelings that you have. (Also, see my blogroll on the sidebar)

6. Start your own blog or journal. Blogger provides a very quick and easy interface to start your own online blog. You can mark it as private so no one else can read your thoughts and feelings or you can make it public to share with other parents. You can also write under a pseudo name if you’re concerned about your thoughts being identified with you. Grab a notebook and write your thoughts down. Not everything has to be done online. Sometimes seeing your own thoughts written in your writing can be cathartic. Put it in a safe place where only you can review what you’ve written and reflect later on how far you’ve come.

7. When you’re ready, you can join various organizations that have group settings for support with other parents of special needs children and professionals. You can easily find one in your area by talking with a caseworker, school official, a therapist. Many people prefer to join support groups that are made up of parents with children with the same diagnosis. Still others prefer general groups of parents of special needs children since there are cross-diagnosed children and insights to be gained from those parents.

8. Become an advocate for your child by doing these things. 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 the (s)he can be.

9. Give yourself a break! Trust me, I know it’s easier said than done. It took my husband and me about 4+ years to get to a place where we had to do this for ourselves, without guilt. I’m sure our son was ready to see other people besides us and really, we needed it. I’m surprised we hadn’t fallen apart in that time. Breaks could come in the form of you and your spouse taking turns leaving the house – leaving the house. You could entrust a family member familiar with what your child’s needs are. One of the best resources we found for our son and our children was our son’s preschool teacher. She offered, we love her, he loves her, we trust her and she knows him almost as well as we do since she had him for 2 ½ years. It works out great!

10. Accept what you’re going to go through. This is quite different that the acceptance in the Grief Cycle. I’m talking about knowing that you’re going to be a maze of emotions, and a knot of tangled thoughts; you will be weary for some time. You will have highs and lows; you will cry, laugh and throw things (if you need to). Give yourself and your spouse the latitude to be human, to know that this is one of the most difficult things in life that could be handed to you, to continue to grieve over what you have lost, over what your child has lost.

Finally, when you’re ready, continue through your cycle and get help if you need it. But always remember to find strength in the depth of your being, for we are special parents given special kids. We must always continue on and can never stop fighting for our children. We will never cease to grieve. We will never give up hope for a better life for our children, and we will never fail to see the light in our children’s eyes that will melt our hearts and souls.

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