Line free is the way to be….I think….probably….Yes, okay, we’re definitely maybe ready for this. I think.

This morning we got a belated Christmas gift:

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I hadn’t wanted to say too much until it was actually done, because we have already delayed the line removal procedure once due to a cold – and we have been close enough to this enough times to know that even when things seem to be going stupendously, that can disappear in the blink of an eye (remember what happens when we get cocky enough to look progress directly in the face? Poof! Liquid shit.)

It’s funny, thinking back over my evolution as a short gut parent. This is the fourth time we have stopped TPN, and the second time we have pronounced ourselves line-free. The first time, a lifetime ago, when we were still with our old GI and before I had begun to make peace with the NOT KNOWING, we only stopped TPN because I pushed for it – and oh how I chafed when we were required to keep his line for a whole month before pulling it, just to be sure he could gain weight without it! And when we finally did achieve that golden pinnacle of line-free-ness, I threw a party, and I fought like hell when we began to move toward replacing a line and going back on TPN.

The second time we stopped TPN, I felt seasoned. I accepted the waiting period, or so I thought, because I knew exactly what kind of hell it had been the previous summer when L’s nutrition slowly failed. But I still went to every appointment with eager anticipation that this time would be the day GI would give the approval to pull the line, or maybe this time, or surely now this one – and I made myself crazy, as seven months slipped by, with me always thinking this week would be the week, until a series of mild illnesses proved that L was not ready to be off of TPN after all.

The third time we stopped TPN, just about nine months ago, I was resigned to the process. I fully expected months on end of weight checks and labs and waiting just a little longer, and then a little longer still. I didn’t ask when we could pull his line (or at the very least, I didn’t ask relentlessly at every opportunity). And four months later, when TPN returned and we began discussing surgery options, I was not surprised. I didn’t fight. I knew he needed it.

And now, having just stopped TPN for the fourth time, I have completed my 180 degree swing. Last month, just two weeks after our last night of TPN, GI began talking about pulling his line by Christmas.

Are you sure? Shouldn’t we wait just a bit longer?!

He can do it, she said. He’s ready.

And so, just in time for the new year, we head into what I supposed you could call Phase 2 – although this is really more like Phase 2 version 4.0, and in reality, like always, we will just keep chugging along and hoping this doesn’t turn out to be Phase 2 version Samsung Note 7.

Although, you know, now that Ivy is gone, if Phase 2 begins to catch fire we can just toss L in a pool. He’s been asking to go swimming….

Look out, 2017. Next year is the first year of the rest of L’s life.

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Red, Red Wine: the story of a boy and his Neil

Last year for Halloween L dressed up as Neil Diamond. neil-1

This is the story of why, in the year 2015, in a classic-rock-and-Black-Crowes-loving household with a fire truck-obsessed child, there was absolutely, without question, no better costume for my two-and-a-half-year-old son.

Once upon a time when L was about nine months old, I bravely took it upon myself to drive the four hours to my hometown with L, alone. “Everything’s gonna be fine!” I thought to myself. “I’ll leave at bedtime and he’ll sleep the whole way there.” And that is indeed what happened – at first.

Two hours into our journey, just as I was congratulating myself on my prowess as a capable, independent mama and thanking the Lord for the night time – L woke up. With a fury.

I tried to soothe him. I offered a bottle. I offered a pouch. I pulled over at a rest stop and bounced around a few empty parking spots with L and his TPN backpack. He. did. not. care. This was not his crib and he did not want to be strapped back into the car and he was ANGRY AND EVERYONE MUST KNOW IT. I finally gave up, bundled us back into the car, gritted my teeth, and turned up the music, resigned to another two hours of car seat rage. He screamed through Robert Plant. He screamed through John Lennon. He screamed through Aretha. He screamed through Chris Robinson and Pete Yorn and Eddie Vedder and Dave Grohl. And then – NEIL came on.

In the still of the night, as the first bars of Neil Diamond’s “Red, Red Wine” filled the car, a miracle occurred. L grew quiet.

The glorious calm lasted only until the song ended. Skeptical but hopeful, I hit the back button. “Red, red wine….Go to my head….

Silence. Two minutes and 42 seconds of delicious silence.

When he began to scream again, I put the song on repeat and held my breath – and lo and behold, he immediately quieted. Amazed and confused, I listened to that beautiful noise for the remaining 45 minutes of our drive.

Two days later, it was time to embark on the long way home. I was certain the wondrous musical salvation I had experienced on the drive there had been a fluke and was preparing for a long, rage-filled ride. Again we left at bedtime; again L made it only about halfway home before waking up; and again – FURY.

I did not hold out much hope, but I resolutely turned up the volume and searched for Neil. “Red, red wine….Go to my head….Make me forget that I….Still need her so….

SILENCE.

From that point on, I was a believer. Going for a long drive? Neil Diamond’s “Red, Red Wine.” L won’t calm down at bedtime? Neil Diamond’s “Red, Red Wine.” Holiday travel? We listened to Neil Diamond’s “Red, Red Wine” on repeat for more than 20 hours in one three-week stretch of December 2014.

Red, red wine
Go to my head
Make me forget that I
Hate my car seat

Red, red wine
It’s up to you
All mom can do, she’s done
But yelling won’t go
No, yelling won’t go.

I’d have sworn that with time
You’d get used to your car seat
I was wrong, and I find
Just one thing makes you not scream

Red, red wine….

It was consistent and effective. If L was upset, Neil Diamond’s “Red, Red Wine” quieted him almost immediately. Other Neil songs would not do. Other versions of “Red, Red Wine” would not do. L knew what he liked, and what he liked was Neil Diamond’s “Red, Red Wine.”

From January 2015 through the summer, we didn’t drive much. After a while, our Neil addiction dwindled. Then, at a little over two years old, L started going to school and we started spending more time in the car. Z and I thought our commute offered a great opportunity to provide a little musical education for L. And one September morn, I wondered….we hadn’t played this song in months. At nearly 2.5 years old – would he remember?

I put it on. He grew still, listening. “….It’s tearing apart….My blue, blue heart.” /closing bars.

“MOAR!”

Hello again, “Red, Red Wine.”

Every day on the way to school: Neil Diamond’s “Red, Red Wine.” It came on the radio once in his classroom and when it was over and they couldn’t play it again, he sobbed. When I picked him up from school, I was the one getting side-eyes from the other parents for carrying the toddler who was yelling, “Mama! Car! Red wine! RED WINE CAR!” all the way down the hall and out into the parking lot.

imageWhen he entered school in August our feeding therapist was pushing for a speech evaluation because he didn’t have a big enough vocabulary. By the end of the winter, he could sing every word. And we let the little boy sing.

Forget lovies and soothies and mama snuggles – all he really needs is you, Neil Diamond.

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