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Goodbye on Good Friday

iStock_000004566565XSmall.jpgShortly after the Cat started first grade, he told me about a boy in his class. "He's a triplet," the Cat explained, before telling me that he wears a necklace to cover his tracheotomy scar.

"A triplet?" I asked, intrigued. After all, I've always thought multiples were pretty "cool." We were still new at the school, so I didn't know the other families yet. Soon thereafter, I found his sister's name in the school directory. I later met her in person: a beautiful blonde who looked nearly identical to her brother.

"Did you mean 'twin'?" I later asked the Cat. After all, there were only two kids in the directory.

"No. Triplet."

A few weeks later, I saw a girl who looked about 2 years old. Her face and body were puffy. She wore thick glasses. She walked a little bit, but mainly sat in a stroller. She didn't speak. It didn't seem possible that this little girl was the same age as her sister and brother. But she was the third triplet. She bore no resemblance to her womb-mates on the outside.

I saw her fairly frequently after that. She attended the same early intervention location that Splig did for his speech. She came to her siblings' recitals and parades, usually propped up in a stroller or wagon.

Today was a "graduation ceremony" for the month-long "Pioneer Days" school program that the third-graders completed. The Cat attended along with his classmates, including the two of the three triplets.

The third triplet was not there. Nor was her mother.

Soon another parent filled me in. The words came fast: You know, she was very disabled. Compromised. In pain. Stroke. Life-support. Second stroke. Struggle. Her whole life has been very difficult. No brain activity. She can't fight back this time. Her body is so tortured. Pulling the plug.

The other parent and I talked about souls. About eyes smiling even when twisted lips and tongues cannot form words. About gratitude, comfort, and understanding even if on the surface nothing seems to change. We talked about how difficult it must be for the family, and how much her siblings understand or don't understand. This family has been through so much, we exclaimed, because although the two blonde triplets look perfect on the outside, they have their own social and behavioral quirks. We talked about how our perspectives are so skewed, because on one hand we think of a release from a difficult situation, from pain, from extreme disability; and yet, it is the loss of life. But since it is not our child, we cannot understand. And since we have not shared the womb with another, we do not know what it must be to have one depart.

On the stage, the two blonde children sang, recited poetry, and smiled as they received their diplomas. Do they know what is happening today?

After the graduation, we exchanged hugs with the father and grandmother. Several of us tried unsuccessfully to hide tears. But what business did we have crying? We have no concept of what it might feel like to be in their position. But we saw in their loss our own vulnerability, and simultaneous guilty relief that it isn't our family.

For the religious, that this girl's death comes on Good Friday might be a comfort. May something indeed "good" come from her departure from this world. If she indeed suffered, her suffering will be over. We might think a "burden" has been lifted from the family, but of course they'd rather have their daughter alive than to be granted respite from her difficult care.

April is Autism Awareness Month, and - today - April 2nd in specific is "World Autism Day." There are months for cancer awareness and other sorts of "awareness" and yet we're all aware. Unfortunately, things like autism are even more misunderstood by the inaccurate information that such "awareness groups" put out. Stereotypes are perpetuated while understanding remains nil. People cheer, so proud of their "awareness" and then turn around and discriminate.

I wish we could understand that all kids (and adults) are different - no matter if they hand-flap or if their bodies are disfigured. Someone who "looks" perfect may have another sort of "disability" or may just learn a different way than your child does. We all have strengths. We all have weaknesses. Instead of awareness, people need understanding.

I don't know how much this girl understood. I don't know if her mind formed cohesive thoughts, if she knew her siblings' names, or who she was. (I am sure she knew who loved her, and I'm sure she felt happy when they were near.) I admit having that curiosity that I know I shouldn't when I first met her. When we are faced with something different, we wonder How did this happen?

But something I do understand, is that this little girl will be very missed.

Comments (4)

Oh how difficult. Everyone has their own cross to bear, but it's heartbreaking when it's so tragic.

Aww. My heart goes out to them. What a nice post. I spent last week comparing my dad, nearing the end of life and regressing into dementia, with DuckyBoy's beginnings over the past few years of fighting his way into socialization and the world at large. Transitions of life suck.

It is always terribly sad when a little kid dies! :*( i wouldn't even have known what to say to that family, because what could you possibly say that could be comforting in that situation???

oh how tragic. A friend of my daughters has a sister who was in that position and it is absolutely heartbreaking....Her service was the saddest one I've ever been to. My daughter definitely knew what had happened and still talks about her from time to time.

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