jaysaint Getting it all down on paper…

Alden, over his shoulder as he walks out of the room, “Hey Grammy, I’m going to take a nap. If you want to destroy me, now’s your chance.”

Today in the car…

Alden: “I want to climb Mountain Everest.”

Me: “Please don’t ever climb Mountain Everest.”

Alden: “Mommy. If I don’t bother the abomindable snowman, he won’t bother me.”

My patience is running short today. I need reminders and a little patience for myself.

Don’t let the cheerful faces fool you.

Let me back up.

I has three work trips, two unusually long, in four weeks. Many things fell by the wayside (hello blog), including Easter prep. Stuffing baskets is the easy part. At least I assume it’s easy. I didn’t lay eyes on ours until the same moment the boys did. Thanks Damon! What I mean by prep is filling the boys in on the giant rabbit who is going to come to our house in the night. Driving to school on Friday it occurred to me that Alden probably doesn’t remember last year. I opened the conversation with “Hey, guess who’s coming this weekend.” Turns out the poor kid not only doesn’t remember last year, he doesn’t remember ever hearing of this before.

My half of the conversation looked a lot like this:

— “Not a rabbit rabbit. A giant rabbit. With, like, pants on.”

— “He brings eggs because… he is friends… with a chicken. Also with Santa!”

— “No, no. Santa isn’t coming this weekend.”

I managed to confuse him so badly that at one point he said, very tentatively, “Is it my birthday?”

It was pretty much a gallop downhill after that.

What I don’t understand is how anyone manages the Easter basket candy at 7am. Do people give kids their baskets and then yank the candy out of their hands until a good breakfast has been had by all? We did not, and so in short order we had two kids in total sugar freefall. We didn’t let them eat much. But it was enough that they refused their breakfast. And so we crammed two buzzing, fussing little boys into their Sunday finest and carted them off to church. A new church my Mom wanted to visit. We were late. We had to search for the nursery. My allergies got the better of me and I had to leave for a while mid-service. I was that woman no one knows walking repeatedly up and down the aisle. When we picked the boys up after the service and Alden hugged me and said, “How was the wedding?” We do not normally look our Sunday Best on Sundays, I guess.

We got off on the wrong foot and could not get our mojo back all day.

Tantrum Eggs

That’s Elliot taking advantage of Alden’s basket-flinging fit.

And that’s Elliot hoping to make a picnic of pretzels he found in the church playground gravel.

He didn’t appreciate being thwarted either time.

Having a swingset all to ourselves helped, though.

My Mom also made us an excellent brunch for which I had to do not one thing. And I’ve gotten this posted before the end of April. I’m going to call it a draw.

In the last hour I have heard the following:

“Mommy, my new rule is that whenever I touch you I have to stop and hug and kiss you.”

“Wanna fight?”

Two days ago I walked through the B concourse of the Cincinnati airport while leaving a message with the doctor’s office saying, “Please do not make me get on this plane without hearing his MRI results.” My boss and colleagues have been the soul of flexibility with us, but I could not hold off the travel any longer.

I futzed with my bag (which was actually a pet carrier because that’s the kind of awesome planner I am.), ordered a drink I then ignored, checked my email, stared at a magazine. The nurse called. Alden’s MRI was normal. What that means is all the most horrifying words I’d heard doctors say over the last month and a half — starting with leukemia and ending at brain tumor — were off the table. I did not think he had a brain tumor. I would have insisted that clearing it was just a formality. I mean, I was already at the airport ready to fly away. Obviously I didn’t think he had a brain tumor. Except I must have feared it more than I was willing to admit. Because when she told me that I felt as profound a relief as I have ever felt. More than I thought was possible. Knots in my chest — the thick kinds you see on ropes in a boat — just let go and I found all this extra space in my lungs. I was dizzy.

I am so grateful. So so grateful. That word isn’t good enough. I don’t know what is. So many families get a different call. We could have gotten horrible, life-destroying news at several turns in this and every time it went another way. There’s no reason but luck. God, the universe, karma isn’t more effective in our lives than anyone else. We don’t love our kids more than other parents. We didn’t try harder than other parents. Alden isn’t stronger than other kids. It is profoundly humbling to be on the right side of fortune.

This boy has a bright future.

What a miracle is ondansetron, also know as Zofran. We still don’t know what’s wrong with Alden, but a well-timed dissolving pill keeps him vomit free. It’s been six days, which is the longest we’ve gone since this all began. There is some terrible cycle that needs to be broken, and what works is to slip that pill in his mouth around 2am. Some people shudder when I tell them I have a standing alarm set for that hour. It’s so much better than the alternative, though, I hardly feel it. If I have to give him a pill every day at 2am every damn day, I won’t consider that too terrible a sacrifice.

Treating a symptom is not the same as finding a cause or a cure. I’m determined to find the first and hopeful to find the second. I’ve heard lots of suggestions, the most likely sounding one so far being a nightmarish condition called “cyclical vomiting syndrome.” I suspect we’ll need a neurologist along with our gastroenterologist. The various doctors we’ve seen have also mentioned rheumatology and allergists. It’s a lot, and it’s confusing.

In hopes of cutting down on the dithering we’re working to get him into the University of Cincinnati Children’s Medical Center. That’s a high-wattage alternative, a research hospital with the #1 ranking in pediatric gastroenterology. I am trying not to indulge in the idea that they will save us, that they will fix us. We just need them to help us.

Alden’s pediatrician asked me last night if we’d tried a night without the Zofran. I told him we haven’t had the nerve. I know we’ll have to do that eventually, but until we get into UC we’re just going to keep doing what’s working.

Alden shows his IV rig to appreciative office workers across the way.