Monthly Archives: December 2014

Christmas, in a moment

Two weeks ago, our little Aimee spiked a fever, became lethargic, and refused to eat. She slept. And slept. And sat up to drink juice, and slept some more. It was worrisome, but I figured she’d pull through it like our kids always do. Three days passed, and she wasn’t getting better. We were watching her chest rise and fall way too fast, muscles pulling in, sucking in air. All she wanted to do was sleep. Ricky bundled her up and took her to Urgent Care on Saturday morning. Her oxygen level was 83%. They called an ambulance.

My family was in town, and we had plans to spend the weekend at a cabin, with snow and a cozy fire and presents and the like. It all fell away. My brother helped me get to the hospital (my keys were in the vehicle Ricky had taken), my mom went into laundry and cooking mode, my other brother played with the boys. Family.

At the Emergency Department, Aimee was receiving breathing treatments, fighting her mask and looking pitiful. She kept rasping juice….drink…..go…..no and we could only hold her, and try to distract her, and keep her from pulling at her lines.

Her tests started to come back. Negative for flu. Positive for RSV. Chest x-ray shows right lower lobe pneumonia. She was still breathing so fast. Her heart was beating 180 times each minute. Faster than a newborn. Grunting. Retracting.

Albuterol, Xopenex, repeat, repeat. No significant response. The doctor came in and said Aimee needed to be transferred to a Pediatric ICU for close observation and high-flow blended oxygen.

I tried to get Ricky his backpack and phone charger before the transport team arrived, but had just pulled into our driveway when he said they were there. He went with them, and I told the boys what was going on and started getting things together.

Aimee was well cared for. We all were. The high-flow oxygen was holding her airway open, providing positive pressure. She stopped grunting, which had been her attempt to stent her own airway. She had been working so, so hard. The first night, I slept in the chair, pulled right up to her crib, lulled to sleep by the knowledge that she was on monitors and they would alarm if anything went wrong. I was so grateful for that. It was like having that first newborn–just needing to know that they’re still breathing until you get used to the idea that they’ll be okay.

Ricky and I switched off, twenty-four hours each. Aimee was a little better each day, and we texted each other updates. O2 down to 6. Back up to 8–she started grunting again. Down to 7. Down to 6 now. Clear liquid diet. O2 at 3. Soft diet. Assessments every 4 hours now. Watching Dora. 

We couldn’t eat in the room, so I talked with other parents in the kitchenette over our food, asking about each others’ babies, offering well-wishes. You feel a bond with other parents whose kids are suffering, and walls break down a bit. You recognize the same tired, brave look in their eyes.

After four days, she was transferred to the regular pediatric floor. No more glass door and constant lights. Oxygen at 2. Regular diet. These markers of progress being checked off, one by one. Little victories.

On the morning of Christmas Eve, she was lively enough to video chat. Nicky did his silly slapstick routines and it was the first time in a week we had seen her smile. Oh there you are, little girl. We’ve been missing you.

I packed up the boys and we made the now very familiar drive into downtown Baltimore, and went up to the family lounge outside the unit to bring Ricky his lunch. To our surprise and delight, both boys were allowed to come in for a visit (Silas with a mask, since he’d been coughing) and Aimee lit up.

A few days earlier, I’d been invited, along with other parents in the PICU, to upstairs and “shop” for any kids on my list. A volunteer handed me five tickets and took me to a ballroom filled with toys (and very nice toys at that). I chose some things for the kids and took my gifts to a row of more smiling volunteers who wrapped them for me. I put them in the corner of Aimee’s room, thinking maybe we’d have a chance to open them. At that point, she wasn’t excited about anything, so I knew it might not happen.

There is something magical about more than one child in a room. They speak to each other differently than we can. So when Aimee and Nicky and Silas were together, the mood changed completely and their two tired parents felt a new energy.

Since we had this unexpected time together, we (giddily) told the kids we had a surprise for them and pulled out the presents. It was a much sweeter moment than I’d thought to hope for.

We had our Aimee back.

Even though we were able to go home later that evening, taking our girl with us, that moment was what made it Christmas. There is no better gift than having your people all together in one room.

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church.

This is probably a thing I’ll never be done talking about.

In the early, cold months of 2014, I drew back from my own life. I couldn’t bear managing things anymore. I’ve already talked about all that. I let go of heavy things, so very slowly, and just as slowly gained clarity about why I was so tired. I gave myself permission, at long last, to stay away from a Thing that causes me anguish and irritation–a Thing that does so much good, that has done good for me too, and that I have served with sincere love–but a Thing that is complicated and a vehicle for manipulation as well as those good things. Church. I went on a gray Easter Sunday and didn’t return again until two Sundays ago. Another gray, cold day.

I went for the ritual of it, for the beauty of spending a Sunday morning with my family, and thoroughly enjoyed that part of it. I went as an act of love for them. I wasn’t scared. I didn’t need to run away or cry in the bathroom or put on a Sunday face. I regarded what was said, found much of it to be incomplete, and went out the doors. It felt like a production, but a wholly sincere one. They think this is what we want, I suppose. I could keep doing that, keep going so that my children have a familiar place to gather each week, but don’t know if I should. There are good people there. There are good people out of there too, but they are harder to find–not gathered so easily.

I’ve missed the ritual of it. Here is the honest truth: I need something outside of myself to bring me to care like I should. As this lovely song says, we could use a guiding star.

It’s getting to where I can incorporate little snippets of Biblical wisdom into my children’s morality lessons. Generosity–if you give to the poor, you give to God. Kindness. Love. Servant-hood, estimating others highly regardless of social station. There is so much good there. I don’t immediately get knee-jerk angry when I open the good book, because of all the things I’ve worked to let go. My parents showed my what it is to give joyfully. I carry this with me.

I want my children to have the gift of faith. I don’t want it to be a heavy thing they feel obliged to carry. I know this weight–it makes you old while you are still young. It makes life seem like a survival trial rather than a gift.

Am I one of the nones? Perhaps. Or I’m one of the alls, because truth is simply true. No one has to bend over backwards to prove it.

I sleep heavy. I used to take such a long time to finally drift off. I’m not afraid of the dark and remnants of my childhood fears of demons lurking, harassing me because I was “doing things for God” have slipped mercifully away. I’m not afraid, and I’ve been afraid my whole life.

When I attend births, I feel like I’m in a holy space. This is what church used to be for me. Now: the trees, the wind, the water, the air–my church. Groups of people sharing life together, watching their babies play, eating good food, telling their stories. Whispering love to my husband. Watching my children grow into amazing and beautiful people, stumbling and flourishing. Watching the seasons come and go. Breathing easier than I ever have. Finding ways to make others breathe easier–I’m bad at this, at not burying my head in the sand, but the struggle is church.

I haven’t found it in myself to declare a label for all of these thoughts and feelings. Maybe 2015 will bring that ability. I don’t need to, for now. I have no desire to cause pain to others, but also no desire to cause pain to myself. I’d love to be understood, but I’ll settle for live and let live.

The brain is so strange and wonderful. What seems completely obvious to me now was not in any way merely a few years ago. I said to my brother, as we hashed out some things like you only can in the wee hours of the morning, that only three years ago I sincerely believed that people who hadn’t spoken a specific set of words were going to Hell when they died. We are capable of holding such conflicting thoughts at the same time. We laughed, we understood. We grew up in the same alien world, and now we’re trying to live in this one.

A fear-based belief system is just a house of cards pretending to be a fortress. It looks small and sad now, but it kept me up at night for how many years–twenty-five? twenty-eight? It’s hard to say. It was everything. All-powerful.

That moment–sitting on a kitchen counter, finding commonality with my little brother, just knowing that we both know–church.

In 2015, I want to seek out more of this. I hope to find it.

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