I grieved when Willy was diagnosed in 2004. It's so long ago that it's starting to get fuzzy but I recall having a few horrible nights in the hospital crying for what wasn't going to be and the excruciatingly difficult road ahead of us, all while knowing he probably wasn't going to live for more than two years. I've blogged about this before; neither Todd nor myself turned the diagnosis into some long drawn out grief fest. It was tough. More than tough. Especially the first few years. But we jumped in with both feet. Over time, Willy became so normal to us. The lifestyle and culture surrounding the special needs world became second, if not first nature. It seemed we had left the grief in the past and gone on to simply live.
We knew he'd pass early. We had many close calls. Two years ago we signed on with hospice services and drafted a Do Not Resuscitate order for Willy. It still seemed normal. Difficult and sad, sure, but normal. Our normal. Willy's normal. The normal that was our life.
All these events, the diagnosis, the 11 years of decisions and care, the fights with the insurance companies, the hundreds of appointments and hospitalizations, to me they seemed like some sort of post-death grief mitigation. I knew Willy's death would come. Although I didn't focus on it, many times I'd think of what songs I might like played at his funeral and how it would be a celebration of life.
Let me just say Willy's death was not mitigated in any way, shape, or form, by the fact that we knew he was going to die early. And this has surprised me. The dark moments come often. Details of the night he passed haunt me. I try to stay crazy busy so as to avoid the nightmare. Grief waits though. It's always hanging around and shows up at the weirdest times.
After a wonderful weekend with friends, family, and fun activities, I hit the grief wall about 9:00 last night. It came in fast and furious and instantly changed the light mood of our evening together. Ted rolled with the change and immediately kicked into supportive partner mode. He let me talk awhile so he could get a bead on where my mind was, snuggled me tight, and then did what he does. Tried to help me make sense of it all.
Ted explained that it's simple math, really. It was easy to think I had already grieved Willy since I already dealt with his terminal diagnosis 11 years ago. I had already come to terms with what he could or couldn't do, or would or wouldn't be. But grief isn't a zero-sum equation. That earlier grief was not a downpayment or a head start on the devastating loss I am feeling right now. Instead, it's cumulative. It just piles on. The grief I am feeling now is being added to the grief from the diagnosis and the grief from the last 11 years. Now, in addition to all of that, I have to face the loss the way anyone else would. My child died in my arms. There's no sense in which Willy's actual death is "better" or "easier" because I've already gone through these other griefs in the past. There's no "at least" that takes away the sting or the sorrow. There's nothing that could have prepared me for or mitigated what I am going through now. One does not diminish or attenuate the other, but rather they compound and amplify each other.
Ted has said over and over that he'd do anything to be able to carry some of my grief. Of course we all know that is impossible. But with this explanation of what I am forever more going to call "grief math," he did, in fact, pick up some of the burden for me. It makes sense and helps me understand a bit more about why this is harder than I thought it would be.
One of my fellow lissencephaly parents, Karen, lost her daughter Hannah years ago. She's a bit ahead of me in this journey so her words of wisdom are much appreciated. She simply said this:
Grief + Grief = Overwhelming Grief
She also said this, "You think you will never get over it and you will never be the same again, and both are facts, but you do learn to live with it and it does soften."
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