Psychiatrist Elizabeth Kubler-Ross developed the “five stages of grief” over thirty years ago after working with terminally ill patients. The stages are everywhere: in pop culture, intro psychology courses…and they have come to apply to any form of personal “loss,” whether it’s a job loss, an incarceration, an addiction, a divorce, and many more. I have found myself progressing through these stages with Eli’s diagnosis of apraxia.
Denial: At its core, denial is a defense mechanism: If I deny that this is happening, I do not have to confront the situation and deal with my feelings about it. Denial can help with the initial blow of pain. But, like any defense mechanism, it only works until it doesn’t. I had my fair share of denial when I learned Eli’s therapist suspected apraxia. “This isn’t apraxia,” I said, “He will talk; it’s just a delay.” “He seems ‘normal.'” I just did not want to think about it.
After I realized that a) I couldn’t deny his apraxia and b) I had to think about it and take action, I got mad. Really, really mad. No one was safe from being a target.
Anger: “Why did this happen to Eli? Look at the other 2 and 3 year olds in his class…they are potty trained and speaking like kindergarteners! They/Their parents think they are so great!” (They are two year olds. No one escaped my ire; I just kept it to myself). “I didn’t ask for this.” “This is my/my husband’s/our fault. We are shitty people and shitty parents.” “I am mad at myself for making all the wrong choices: I should never have gone back to work/had post partum/let him watch TV/fed him formula.” “I am angry that we will have to work harder, spend countless hours and dollars on therapy with no promise of any certain outcome.””I am angry that my attention and resources for my daughter will necessarily be diverted because of this disorder.” Shamefully, I got mad at Eli. “Why can’t you be normal?” “Why can’t you just talk and tell me what you want for dinner, dammit?” I never said these things out loud, and I am quite embarrassed to admit that I had these thoughts, but I started this blog to be open and honest, so there’s that.
After anger, one moves to bargaining; personally I think anger and bargaining overlap, because in bargaining, one thinks of what might have been and how they can go back to the before, before the loss/diagnosis/death.
Bargaining: Secretly, I made many deals with G-d. I promised to be a better person/wife/mother if G-d would just give him speech. I’ll quit my job, stay home and be a supermom; please, G-d, what do you need me to do?
Depression: Once I realized I could not negotiate myself out of this, I got incredibly sad. I was sad for Eli: Will he have a “normal” childhood? When will he realize he is “different?” Kids can be so cruel; will he be bullied/picked on/have trouble making friends? Will he have trouble in school academically? I was sad for me: It may be years before Eli can say, “I love you, mama.” While cognitively I know from his snuggles and sloppy, drooly kisses that he feels love for me, I am emotionally sad that other kids can tell their mothers that, and he can’t. I am sad for my marriage and my family: this disorder and intensive treatment will require resources, energy, time and commitment, and it will necessarily cause stress to the marriage and our family. I want a child who doesn’t have this; I want what I can’t have.
As someone who has struggled with anxiety (and probably some depression) for many years, the episodic depression that comes with the grieving process can be especially hard. I have days where I don’t want to get out of bed; I cry: I drink too much wine so I don’t have to “feel;” I over-exercise so that if my body feels pain and soreness, my heart won’t. But, I keep going and recognize this is a marathon, not a sprint (running pun intended).
Acceptance: Finally, acceptance. This will forever be a part of Eli, of our family, of our life. I will be strong to get him the help he needs. I will immerse myself in the literature, become his biggest advocate, and reach out to others for advice. There is no way to go back and somehow change something for him or our family, and I have a sense of inner calm that wasn’t there before.
So, where am I now? I think grieving is not a linear process, nor one with set timelines, and there are no right or wrong ways to do it. That said, these days I waver between grief and acceptance. I have days where I am very, very sad about Eli’s apraxia. I also have days where I am on the CASANA site learning as much as I can, posting questions to listservs and Facebook, fighting for insurance coverage (more on that in another post) and talking to other apraxia parents about our common struggles, hopes and fears.
Accepting does not mean I am “okay.” I may never be “okay.” What it does mean is that we can, and we will, find a way forward. Life goes on, and while it may not look quite as I pictured, we can still paint a pretty great one.