Wednesday, March 4, 2009

Grief - part 1


“Forgiveness is the key to action and freedom.”
-Hannah Arendt

This post isn't meant to be a downer, but as a foundation for you as a place to start. You may not have felt you were going through any emotional stages when you found out about your child's disability, or you may still be in the midst of the torment. Feelings are not right or wrong and you can feel any and every emotion as much and as long as you need to.

I want you to grieve for the loss of the “perfect life” that you’ve been dreaming about since you were a kid.
I want you to grieve for the loss of a “normal” child.
I want you to grieve for the loss of your not being a “normal” parent. Cry yourself into exhaustion!
Why? Because you can learn from the torment that all parents of special children experience - you must feel the grief fully now or it will come back to haunt you later. After your grief is spent, you can then put those feelings in the trash and concentrate on your blessings, but you have to get through this first.
“I cried and cried and cried until there wasn’t anything left. I’d try to hide my crying but the swollen red eyes were a dead giveaway. I stopped eating and just couldn’t figure out how to see any happiness in the world. I should have been happy my child lived at all but all I could do was cry for the life she wouldn’t have. My whole body hurt for months and I started having panic attacks.” ~Deb
Grieving comes in many forms, but most people go through these seven stages: Shock, Denial, Anger, Guilt, Depression, Acceptance, and Growth. You can find the Elisabeth Kübler-Ross grief cycle at Though the research is about the death of a loved one, you too are going through the same feelings for death of hopes and expectations. The feelings are real and perfectly normal to have.
You may think that you’ve already passed through all of these stages when you first heard the doctor’s diagnosis. It’s true that can be the worst of the shocks, but new things crop up at every stage during your child’s development….an undiagnosed heart condition, a family member not being supportive, elementary school, assisted living, so you may revisit these stages and feelings again.
There aren’t “things to do” with each of these stages, you just have to feel them through. I’m sorry, but it’s imperative to your future, and that of your children, that you take each stage as it naturally comes. This is about knowledge as power.

This post is about the first two stages. I'll cover the following three next week, the remaining two after that.

Stage 1: Shock ”Is this really happening?”
The first reaction on hearing the bad news is one of classic shock. This initially may appear to everyone as if there is no reaction at all to the news. I had a buzzing in my ears. You may nod and accept the news without appearing to be troubled by it. Inside, you are frozen and the news really hasn’t taken hold yet. To get the news through, I had to be told several times.
This was followed by the more external signs of paling of the skin (hard to do when I rarely sport any kind of natural color), shortness of breath and physical freezing. I was classic textbook shock. I should have been in one of those cheesy films with the bucket of cold water being thrown on me and I come up sputtering. My friend, Jackie, told me she also had a loss of appetite because she felt numb and confused.
There really isn’t anything you can do about the shock but ride it out. This stage doesn’t last very long as Denial swarms in quick.

Denial: I don’t think so!
After the initial shock has worn off, the next stage is usually one of denial where you pretend that the news has not been given. You effectively close your eyes to any evidence and pretend that nothing has happened… my son does “la, la, la, I don’t hear you” with his fingers in his ears.
Typically, you will continue your life as if nothing has happened; pretending those three monkeys with their hands over their eyes, ears, and mouth are your friends. In the workplace, you will carry on doing your job even if that job is no longer required. You can file every paper in your office and leap tall buildings because your life is just fine thank you. If you are doing any of the three things below, you are paddling up “De-Nile” river right into the first big depot of Anger.
* No change in daily routine
* No preparations for future needs
* “Not my child!”

One thing you need to keep as your mantra is "perfection is not perfect". Perfection is simply the expectations that are unattainable.

If someone says they haven't grieved and life is rosy, they are a freaking liar or have a substance abuse problem. Let's just call it on the table. We're talking about the life of your child, and very directly your life as well. Next week we'll dive into the anger, and more, the suppressed anger; because for some stupid reason we special needs mothers are never supposed to get angry.

Well, let me clue you in.......I was pissed and it still flares up at how unjust the world can be.

Until next week, when we are getting angry again (HAHA), have peace in your heart. And if you can't, then keep yourself and kids safe.


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