James and the Terrible, Horrible, No Good, Very Bad (Holi)Day.

A belated Happy New Year from the ICU Family!

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N-E-T-S Nets! Nets! Nets!

We went into these holidays with high hopes – my parents and all 5 of my siblings (and one sibling-in-law) descended upon us just before Christmas, and the plan was to have both families together to celebrate.

All was fantastic, initially. Luckily our two families get along well, and we really were having a great time – basketball game, big family dinners around the table, board games…classic family holiday season.

As I reflected on the one year anniversary of the day everything went pear-shaped with J (Christmas Day, natch), holding him while looking around the table our families who we love so much laughing and having fun, anticipating leaving in the morning for a week of skiing at a cottage in Vermont, I though to myself “We deserve this, dammit. We deserved a happy Christmas, and we finally got something good.”

James' and my view of the Christmas dinner table.  And then, 24 hours later...
James’ and my view of the Christmas dinner table. And then, 24 hours later…

Yeah. Spoke too soon; have I learned nothing these past 12 months?

The next morning, James had a respiratory attack. My doctor sister sat with me while we tried a variety of nebulizers, and we eventually got him stabilized after about an hour.

I should have recognized how sick he was getting. But we are just desperate to keep him out of the hospital because of the infection risk, and if I’m being honest with myself I could not admit that something might be disrupting this picture perfect holiday season we had been so enjoying. Also immediately afterwards, the septic tank at my in-laws’ house overflowed into their basement, and between the floating poop in the suitcases and trying to pack up for Vermont while James slept quietly, we got distracted.

This. Urgh...
This. Urgh…

Without being dramatic about it, James nearly died in the ER that day. This was as close as we’ve come since last year. It involved ICU Dad driving like a madman to the local fire station, transferring to an ambulance with me holding J on the gurney, and steroids, epinephrine, Code Blue etc. (I do feel a little guilty for all the profanity the kiddos in the ER must have picked up from me that afternoon, and who knows what J was thinking as his mom was yelling in his face “Come on James, WAKE UP. WAKE F*CKING UP, BABY BOY”). That sh*t was terrifying.

Yes, on J’s one year anniversary of his entry into PICU … he was admitted to PICU again.

At least Max got a ski holiday.
At least Max got a ski holiday.

The rest of the weeks were a blur. Once he got on some antibiotics and diuretics, J had about 2 touch and go days in the PICU followed by rapid improvement – it took 9 more ICU days, but he’s home again. Max still got his ski vacation, it was just with his grandparents and aunties and uncles instead of Mom & Dad. As we had closed on our new house two days before Christmas, we still had to move, which I handled while ICU Dad stayed with J in the hospital. Painters, movers, family members cleaning on their hands and knees … it got done, but it was really like one thing after another (e.g. the furnace at the new house was dead when we arrived, the washer dryer were not working, a nasty busybody neighbor at our old condo complained about our move, condo cleaned for the new owners, the cat decided to express his displeasure with the move by using the duffel bag containing all of the Christmas gifts our family had received as his litter box – which I didn’t discover after he had been doing so for over a week. And on and on and on.)

Food for the hard working helpers...
Food for the hardest working family a girl could ask for…

I started to visualize myself as a pebble in a rushing stream, and it’s a concept I’ve come back to many times since that week. When the water is rushing all around you, all you can do is let yourself be carried along until it calms.  And, at the risk of being labeled a Pollyanna, other than those horrible moments in the ER, I do not think we will have bad memories of this holiday season.

The truth is, while we’ve had a tough year, that doesn’t entitle us to a damn thing. If we wait around for good things to start happening, based on our luck we’ll be doing just that…waiting. Sounds pretty boring to me.

Happy 2015! James, you are hereby ordered to be in next year's NYE picture, at home. OR ELSE (your mom will seriously lose it).
Happy 2015! James, you are hereby ordered to be in next year’s NYE picture, at home. OR ELSE (your mom will seriously lose it).

We have to make our happy and joyful life out of the circumstances we’ve been handed. These holidays were a challenge. But really, what will I remember about them? ICU Dad and I got to spend New Year’s Eve together this year because J is the only kid I know who has an ICU Grandfather who couldn’t stand to see his son spend another NYE on a hospital couch. My 21-year-old sister, who spent a day in Brooklyn on her own choosing paint colors and contracting with a house painter. My sister and brother-in-law scrubbing our new house, top to bottom, just in time for the movers to arrive with all of our stuff. Max’s grandparents and aunties and uncles, coming together to soften the blow of yet another stretch of hospital time for his younger brother. So much laughter despite the darkness.

And that James, sweet baby boy (thank you universe, yet again), survived.

I cracked a joke to a colleague at work, after being asked how our holidays were, that my standard is now “Is everyone alive and safe? If yes, it was great.”  He laughingly responded that my standards had gotten pretty low if that was the case.

James and his Grandma -- post-ICU stay.
James and his Grandma — post-ICU stay.

Maybe they have. Or maybe, our standards are pretty f*cking outstanding. What would the holidays mean without the people you love? If you are not lucky enough to be surrounded by those people, does it really matter where you are or what you are doing? Not to me.

Yes, my baby was in the black hole of the PICU again. But, hello?! He survived and is back at home and making progress once again. Many parents whose kids were in the same position as J are coming to terms with an unimaginable loss this month.

Yes, my cat sh*t on our Christmas gifts. But, hello?! We were blessed enough to have a duffel bag full of gifts from parents, sisters, brothers, aunts and uncles, and a washing machine to clean up the damage. How lucky are we?

Yes, the furnace wasn’t working when we arrived at our new house. But, hello?! We are lucky enough to have a new house with enough room for our family to grow in the coming years, and I had my eminently capable sister and brother-in-law on the case to arrange the repair. Amazing!

Does it sound like I’m drinking the Kool-Aid? Possibly. Or maybe just too much wine. I’ll tell you what: my life feels much more manageable, fun and joyful in this frame of mind.

There is no such thing as a charmed life. Bad things will happen to you, as they have to us. Our job, as parents and as people, is not to let those things write the story of our life. Instead, we have to weave them into a greater tale – right now, ours is about two parents who love each other, their two children, their family and their friends more than anything in the world.

Everything else is just white water rushing on by.

Sorry about all the excitement, guys.
Sorry about all the excitement, guys.
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