More bitter than sweet

Piper started her first full day of preschool this morning. By full day, I really mean 2.75 hours. It’s something. It’s a milestone that I have been dreading. Not dreading because she is my youngest, my last to leave the house, but because she is doing it without Tuesday. We laid in her bed and I wept and she sobbed.

I don’t want Tuesday in my heart, I want her in my school.  I want Tuesday to come back
I want Tuesday to come back

I feel so fucking inept. All I can say is, I do too. Because I do. It doesn’t matter how totally impossible and irrational it is, I want her back.

Piper is a great kid. A funny, happy, whirlwind of loveliness. Everywhere we go, people ask her where she got her curls, and she always replies, from Tuesday. I’m sure they wonder what the hell that means.  She will always be our beautiful, painful reminder and for that I am eternally grateful. And still eternally heartbroken.

But, she is also struggling right now. She cries for her twin daily.

I miss Tuesday.

We draw her a picture and she puts it in a drawer. Sometimes Tuesday thanks her with a rainbow. More often than not, a double.

There is very little useful information on twin loss in childhood, and what there is is subjective and circumspect, because if I’ve learned nothing from this tragic world of child loss, it’s that we all do it and feel it different. Someone else’s take on the matter is just that, their take. I’m finding that I am her expert. It’s a daunting task. The bondshe shares with Spence and Axel runs deep and they are her ultimate protectors.

And they are having their own issues, too, that I’m weeding through. Spencer is burdened with this sense of responsibility to care for all of us and make sure we are safe. He has trouble sleeping and we can’t talk him out of it. He doesn’t want to talk about it all. He’s an amazing empathetic and sensitive soul.

Axel, after almost 6 months of the silent treatment for every and all adult, is starting to blossom. He has our sense of humor and and cracks us up when we least expect it. I worry he will always feel the need to be the one that makes us laugh.
We are a psychologists wet dream, the 5 of us.
The 5 of us.
I still hate that.
It should be the 6 of us

Whitt, party of 6.

But we are healing. Somehow we are better than we were a year ago. And in other ways we are worse. But maybe next year we will be a little better than last.
More sweet than bitter.

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Whatchagonnado?

Without further ado, www.whatchagonnado.org

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Exhale

Fever free. Rash free. Worry free. (ha! That’ll be the day. But I’m working on it.)

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The only thing we have to fear is fear itself.

Piper is on her second run of fever in as many weeks. Last night she broke out in a thick rash that she’s worn all day. Sometimes this is how it starts with Neuroblastoma. This fever followed by rash is how it started for Tuesday. 2 years ago, on this date, she was diagnosed.
I replayed and replayed and replayed those first trips to the doctor and then the ER and then the Oncology floor at Children’s, all last night and much of today.
Fear is a powerful enemy. Memories can be palpable. If only I could feel and smell Tuesday the way I can still feel and smell that room at that moment.
Piper is most likely having a reaction to the MMR shot she got 2 weeks ago. That’s what the rash looks like anyway, which happens to also look like Roseola. Roseola is what Tuesday had right before she got sick. I’ve always wondered if there was a connection.
I’ve read, “Where there is no faith, there is great fear but where there is great faith there is no fear.” Whoever wrote that was clearly never the parent of child with cancer.
I remain full of both.

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Flash Dance

I saw her again. That girl I used to be. She was having lunch with her college roomies. She was having a beer with an old friend.
Laughing.
She’s so tempting to me. I want to flirt with her, dance with her again, but it’s too dangerous. How can I come back to this girl if I linger too long at that girl’s side?
Because I have to come back.
People are counting on this girl.

My mind keeps dragging out moments from 2 summers ago. And the summer before that.
I hit them back like a piñata and they swing back at me,
again and again,
until it busts open. All the pieces of my life scattered across the lawn. It can’t be put back together, so you grab what you can in your hands and go on home.

But home doesn’t feel good either. The walls are covered with pictures of that girl’s life. And the cute boy she married. Those people our children will never remember. The ones I want to dance with.
The people we were before.

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