Wednesday, March 26, 2008

Magic Beans

Thomas’s new thing last week was the "magic seed” ..which can also be the “magic rock” or the “magic shell” or the “magic little train car.” He'd find something hand-holdable in the morning, and he’d hold on to it all day.

And by all day, I mean that if a task required two hands, Thomas would turn to us with the seed as if to say, “Hey, can you hold this for a sec?” I'd go in to give meds at 4 am, and he'd still be gripping the bumpy seed or little train.

This week, there's little magic. Thomas is having a tough time of it, so we are, too. I started thinking about how many seasons we’ve been through since cancer started, and how we've needed something different to hold on to at each point.

I've talked to a lot of parents by now whose kids are facing terminal diagnoses, and I think I see a pattern in all of us parents’ experiences:

Stage 1: Chaos of initial diagnosis. We shut down. Do what we’re told. Trust the doctors desperately. Needs: someone to remind you to eat

Stage 2: Anger. We’re mad at the disease of course, but it’s the doctors or nurses or relatives who get the flak. Needs: somebody to listen, and coffee

Stage 3: Learning Curve. Ok, we’re going to have to live with this disease for a while. Let’s get some control, make ourselves useful. Figure out the meds, the equipment, the lingo. Needs: smart nurses and docs who know how to teach

Stage 4: Exhaustion. I know how it all works, but I don’t care. Needs: A nap.

Stage 5: The New Normal. We hold our breath, but try to settle into an adjusted version of life. Siblings go back to school, parents go on a date. Needs: to be left alone a bit

Stage 6: The New Idea. Surely the reason why we’re not cured is because we haven’t found the right treatment, or the right hospital or doctor. If we’d think outside the box or try harder, everything would turn out better! Needs: Someone to listen, and doctors you can trust

Stage 7: Still Sick? Be depressed, anxious after new idea didn’t work. Needs: coffee

Stage 8: Nesting/The New Normal 2. This is probably the beginning of acceptance. We hunker down, prepare for what we can, try to hold on to some fun and peace. Needs: a little family vacation, nice family dinners.

Stage 9: Things fall apart. All stages occur in a single day, out of order, or concurrently. Needs: counselors, smart hospice people, extra patience for the spouse. Coffee.

Stage 10: Acceptance. We quit trying to segregate the sadness from the joy. We stop thinking of death as a thief. Needs: quiet, and friends who can sit with sadness. And coffee.

Diclaimers:
I’m betting on the Stage 10 thing. I think I can see that coming, but it's a guess. Right now it's all the downhill jumble; I can't see much at all, to tell the truth.

Also I’m not totally sure that other people have “coffee” as their main magic seed. I feel certain they should.


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9 Comments:

At 6:39 AM, Blogger Lizard said...

beautiful...transparent...thank you...

coffee will always be my magic seed...

 
At 6:41 AM, Blogger Ctelblog said...

Love is a drug. But coffee is the only drug I can't live without.

 
At 6:42 AM, Blogger Ctelblog said...

And, I agree 1-9 but am not sure how long it takes to ge to 10.

 
At 1:06 PM, Anonymous Anonymous said...

Though I am not one that knows you personally, I feel I know you so well from this blog. I find myself well up with tears of joy and worry when I read your posts.

I find myself drawn to your blog because I am a mother and I my profession brings so many children in this same situation in and out of my life. I find strength in you and your family.

I keep you all in my thoughts and prayers and I wish the very best for you all. You have a bright and shining star that will last a lifetime.

I find much truth in this post, that fits in many situations. And kudos on the coffee. The days just don't seem the same without it.

 
At 5:19 PM, Blogger Thomas, as told to Sarah said...

ctel, you've got a pop song there. Surely Starbucks would pick that cd up...

 
At 1:38 PM, Blogger Michelle D said...

So so cute about the little magic items carried around. Thinking of you guys a lot lately. Praying always. Hugs and toasting my coffee:) Round #8 for me today.

 
At 8:50 PM, Blogger Jana said...

Thinking of you often....praying to jesus....

 
At 7:02 AM, Anonymous Anonymous said...

Sipping my Maxwell House and praying for you all.

 
At 6:52 PM, Blogger Carol said...

Thomas is such a beautiful little boy. I think of you all each and every day (even though I don't even know you). May God bless....

 

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