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I’m just going to put it out there. Living with a child with multiple disabilities, I don’t believe there’s a six-step grieving process, that you go through anger, denial, etc., and at the end comes acceptance.
For us, and for families like ours, things happen differently. Before I explain, a little context…
On our honeymoon, I snorkeled at the Baths of Virgin Gorda, diving and swimming around prehistoric boulders the size of small buildings. For a while I was down there alone, and I plunged along one of these great dinosaur eggs, rappelling down its smooth face toward the underside, into a scatter of blue and yellow fish. For a brief shimmer, I couldn’t right myself, scrabbling my hands against the rockface. Then I seized my calm and pushed off the boulder and let the watery force lift me to the surface. It happened so quickly, I knew little fear. Only the sensation of being too deep, too long.
I had that same feeling beginning the day Gabriella was born. Not only did we face the changes all couples confront with their first child, but we encountered new routines unique to our daughter. To secure her dislocated hips, we triple-diapered her. We learned to soak off the tiny casts that the orthopedist put on the vertical talus on one foot and her clubfoot on the other. And before she was two weeks old, her weight fell below five pounds and we rushed her to the ICU.
In the following months, cataracts appeared and she underwent four surgeries, one to extract the blight from each eye, and two more to implant intraocular lenses. The surgeon broke and reset the bones to correct the clubfoot. A bump emerged on her head and swelled, leading to a frozen section that indicated that the tumor the neurosurgeons had removed was a malignant sarcoma. And we already had a diagnosis that not only threatened our daughter with mental delays and a shortened lifespan, but loomed over future pregnancies as well.
You hear about the six stages of grief: shock, denial, anger, bargaining, depression, and finally acceptance. And we certainly did our tour of the stages. Exhausted, overwhelmed, unable to focus on anything else, we sleepwalked through those first weeks in the hospital and out.
Denial followed soon after. I became unwilling to accept what was happening, and more so that this would impact the rest of our lives, but it was and it would.
Anger consumed me, and for a while I blamed God. I didn’t understand why this had happened to us, to this tiny faultless child. And that led to bargaining.
We were depressed a lot in the early years. Despite my natural optimism, it took a while, but we got to acceptance, too. So why then do I reject the traditional notion of the six stages?
Because the grieving process has not been a onetime thing, the stages coming rapid-fire in their own sequence.
Every time we confronted something new, a fresh process started. I felt shock in the beginning, shock again when our daughter became dehydrated, shock that she had cataracts, shock at the diagnosis and again with the frozen section. While I was denying Opitz trigonocephaly, I was in shock over the cloudy spots in her eyes. While I bargained with God for a pathology report that refuted the sarcoma, I accepted the forthcoming strabismus surgery.
So when I say I don’t believe families with children with disabilities have a grieving process, I think instead that there’s a series of six-step processes, one within the other like Russian nesting dolls.
In a way, knowing that brought us wisdom and comfort. The emotions were different each time, but we knew we would make it through the emerging process as we had the prior round. But that didn’t mean we dreaded any less the pain of the one in our sights.
In the end, life with Gabriella will always be different. We accept that, even if we follow a circuitous path to get there. Again.
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