Grief Work

I had a very hard day yesterday.  I finally had two hours to myself for the first time in months.  Two hours that I knew would be uninterrupted.  I let the weight of the past few months bear down upon me, and I let it crush me.  It was time.

Have you ever cried, wept really, in such a way that you heard yourself making sounds that were unrecognizable? I scared the dog.  She ran into another room and refused to come out.  My body was wracked by heaving sobs.  I carried on for over two hours.  When I cry like that, it’s like a lament.  I usually talk, too, and all sorts of thoughts and accusations are shouted into the atmosphere.  Broken dreams, hopes deferred, and toxicity.  It needed to happen.

There’s a name for this: grief work.  When you have a child who is diagnosed with a life-changing illness or condition, the landscape of your life changes.  Every part of it.  Nothing is untouched.  I’ve been here before.  I have another daughter with an autism spectrum disorder (ASD) so I knew that a moment would arrive when I would crack.  Everything is strained.  If the condition requires a lot of services–occupational therapies, speech therapies, mental health services, medical services, and pharmaceutical supports, then your finances could end up in ruins.  Dream 1: Financial security.  When you have children, one of your primary hopes is that your children are healthy in both mind and body.  Dream 2: Healthy children.  Oftentimes, people have hopes that they might travel with their children, show them the world or all the places they have visited.  How can you do that if you have an ill child or a child whose behavior is so unpredictable that even performing daily tasks are difficult? Dream 3: Personal Hopes and Expectations.  What about your child getting a good education? Currently, Grace is only able to go to school for 3 hours a day.  Certainly, it won’t always be that way, but a brain caught up in grief doesn’t always see what is rational.  It panics.  How will Grace catch up? Will my child ever be normal again?  Will my child make friends? Will she keep the friends she has? When she’s self-harming and you’re on your way to the Behavioral Health Emergency Room, will she even make it to 18?  Dream 4: My Child Will Have A Good Life.

Will I ever have a normal life again? Dream 5: I Will Have A Good Life.

There is real loss when your child is diagnosed with Bipolar Disorder…or an Autism Spectrum Disorder…or anything else.  In order to become the parent you must be for your child and your other children, if you have them, you must acknowledge your feelings of loss, your fears, and deal with it.  You must find a quiet spot, lance your own broken heart, and let the toxic feelings out, or it will poison you, your relationship with your child, and your relationship with your partner.  Feelings are feelings.  They do not reflect upon the quality of your character, but if they are stuffed and swallowed, then they can embitter it.

  • Why me?
  • I didn’t sign up for this.
  • I don’t want a mentally ill child.
  • I want my healthy child back.
  • I hate my life.
  • It’s not fair.
  • I had dreams for my own life, too, you know.
  • I feel so alone.
  • No one understands what this is like!
  • My friends get to take vacations, and their kids are taking classes.  Their kids are healthy.  We’re broke, and my kid is hospitalized! I hate this!
  • God is punishing me.

It can get pretty toxic when you start letting it fly, but it must be let out.   Underneath all the infected rhetoric lies the grief, and that’s what must be felt.  Once we grieve properly, we can begin to see our lives, our children, our relationships, and ourselves more clearly.  Many people think that grief is only for the loss of a loved one–when someone dies.  Nope.  We grieve for all sorts of things, and the loss of a healthy child in the form of a long-term disability diagnosis such as Bipolar Disorder requires grieving.

Elisabeth Kübler-Ross identified five stages of grief:

  • Denial and Isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Not everyone goes through every step, and not everyone grieves “in order”.  It seems, however, that most people do experience grief in these terms.

I encourage everyone to grieve properly no matter the loss.  Grief acknowledges the worth of what was lost and your own worth as well.  It also liberates us from unmet expectations and hopes deferred so that we can go forth to forge new hopes and dreams in light of new circumstances which is crucial.

For more information on the Five Stages of Grief, here’s a good article.


12 thoughts on “Grief Work

  1. When I began to understand the depth of the problems you are facing with your daughter I instantly began to weigh my own reaction should I be in your shoes. My mind went quickly to those crossed out dreams, and I shuddered. I am not sure I am nearly together enough to deal with this level of turmoil. I have experienced grief for many those dreams before, but nothing has shaken me to the depth you are talking about. I am impressed by your strength.

    • My first reaction is to say: Please don’t be impressed with me. I’m actually not doing so well right now. I’m really struggling because these things always spill over into other areas of life and poke at other things. Things I really don’t want poked. Nonetheless, I’m being poked. I don’t like it. REALLY don’t like it.

  2. Wanting health and life security is probably fairly universal (I say probably because I feel myself leaning more and more towards not caring). So what I don’t get is why people refuse to see that we’re all in this together, and it’s just luck of the draw, and some people get a bad draw through no fault of their own (despite what some people on the political spectrum would have us believe). Share the risk, share the rewards, you could be next I say. You’re right: you didn’t sign up for this. Other days I’d say, yes you did, but today I say, you know who signed up for this? Society did. Civilization did. Well step it up, society and civilization, Get your priorities straight. We’re all in this together. Life isn’t a spectator sport.

    • And, you would called a socialist for that. 😉

      Well, I think that when we have children, we don’t anticipate extraordinary illness. In that context, we didn’t sign up that, and that’s something that people must work out, or they’ll get stuck in the bargaining phase and never move on. I’ll get nailed for this, but oh well…Cure Autism movement? That’s one really big movement of people stuck in the bargaining phase.

      • Ironic how the antisocial guy — excuse me, the asocial guy — would be called a socialist. So I’ll argue the every-man-for-himself side. You signed up for it. Either you did your homework first or you didn’t, but either way, it’s your fault and you get what you get. And it’s my fault I’m living with MS.

      • I never knew I could be at fault for someone else’s descent into mental illness. I don’t know how to respond to your comment. I also never knew that a person could be held accountable for their own body’s attacking the myelin sheath. Yours is a worldview I don’t share, I think. And as for the one statement I made in my list of griefs: I didn’t sign up for this. No, no one signs up for childhood-onset schizotypal bipolar disorder just like no one signs up for MS or no one signs up for any other kind of human tragedy. We just don’t expect it. That’s why it’s a loss. That’s why we must air our grievances and do the grief work so that we CAN get on with living in order to move forward rather than getting stuck.

      • Just to be clear: it’s not my fault I have MS. It’s my fault I’m living with it and not just getting out of the way. As long as I can keep a job and be productive, society begrudingly props me up. But the cracks are very large and easy to fall through. We all sign up for this stuff merely by being alive. Shit happens, and it shouldn’t matter who it happens to. An attack on one is an attack on all of us. We’re all in it together.

        I’ll stop confusing you now.

      • I think your use of the word ‘fault’ confuses me because fault implies culpability. In that sense, I don’t believe I’m at fault because I exist. Just because I can correlate existence and tragedy doesn’t mean one causes the other, hence, correlation doesn’t imply causation. No, I don’t think that mankind “signs up” for all manner of suffering just because they exist meaning actively “signing up” for it as in volunteering for that certain circumstance as a person signs up to fight a war. And, I don’t blame myself because I suffer because I exist. That’s foolish. How would I ever move forward with any sort of empowerment in my life if I were culpable in that way? No. I did not have a child so that she could be mentally ill, and she did not come to exist so that she could experience an illness that has no cure. None of us do that.

        That question is: What does one do with that? How does one grieve that loss? And how does one find empowerment, strength, hope, and optimism in the face of an illness that will never be cured particularly when it begins in one so young and has the power to affect not just the child but everyone around her? And, can completely annihilate her ability to get an education, live alone, and even kill her before she comes of age? These are legit questions that must be answered honestly.

    • Sincerely..thank you. This has been a very…trying year for our family. I’m trying to learn from it and let it improve me. I want to let it teach me so that I can be a better human rather than let self-pity or “why us?” hold sway. So..thanks for reading. It means a lot. xo

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