We had snow twice this winter, which is pretty much unheard of for Austin. The first time was a dainty little dusting that only fell for a few minutes and nonetheless captured the entire family’s interest as thoroughly as if it had been a monumental blizzard. I was at work, and I just stopped everything and stared out the window, open-mouthed, like an awestruck child. Back at home, my own awestruck children ran through the yard enjoying the rare treat and letting the snowflakes melt on their tongues. Sam took dozens of pictures of the flakes that were so small they barely showed up on the camera.
A few weeks later, we were positively inundated with snow. Thick, damp flakes fell all morning and settled resolutely on the cold ground. Funny what a difference in perspective we had on that snow day, though. The second time around, we were enjoying a brutal round of strep throat that hit the whole family, except Nico. Lying around a filthy house littered with empty Gatorade bottles and saltine cracker wrappers, Sam and I took turns sleeping and holding a miserable Lincoln, who also had a sinus infection on top of the strep. When the snow started, it was about 24 hours after Sam and I had been given penicillin shots and though we were starting to feel better, Linc was still in a bad state.
By afternoon, the snow had covered everything, and Nico could stand it no longer. He begged to go outside and play in it, a request that we just had to honor given the fact that he had been stuck inside with a bunch of sick people for days already and we just knew the white stuff just wouldn’t last until we really felt up to walking in a winter wonderland with him. It was a moment of parenting excellence, if I do say so myself. We put Lincoln down for a nap, dug out the box of gloves and hats, and tried desperately to add pneumonia to our list of ailments. It was great fun, actually, and for a few minutes we forgot how truly horrible we felt. We made a family of snowmen, taught Nico how to do snow angels, and of course had a snow ball fight. There was even some discussion that we should be grateful that the strep throat had forced me to stay home from work and made the whole family snow day possible.
A couple days later, the snow was long gone, but the strep was proving more tenacious. I improved but then had a relapse, and ended up in the urgent care clinic on a Saturday afternoon while Sam was working. The doctor told me I had an abscess in my tonsil and gave me three more shots. It was (outside of being in labor) the most uncomfortable I had ever been, sitting in that exam room with two kids, waiting for the doctor to decide whether I needed to go straight to the E.R. or if I could be sent home to wait on the effect of the shots. Nico ran around the room like a manic terrier, pawing at everything and hopping all over the furniture. I kept looking down at Linc sitting peacefully in his stroller and thanking God that he was such a good, well behaved kid. He was so still, so calm, despite the terrible circumstances.
So still and so calm, in fact, that I should have known something was wrong. By Monday, Linc’s lethargy was so pronounced that Sam took him back to the doctor. In fact, his appointment was at the same time as my follow up appointment with an ENT. Just before the ENT walked in the door, I got a call from Sam. “We are on our way to the E.R. at the Children’s Hospital. The doctor said to expect him to spend several days there. His O2 was at 70.”
You see, we remembered O2 levels from the NICU days. It meant that his blood wasn’t getting enough oxygen. It should be right up around 100. Even in the scary NICU days, I never saw it get below about 85. When the ENT arrived, I was crying. He took one look at my throat and said, “You must have been in a lot of pain.” I said, “I was, and am, but my son just got checked into the hospital.” He just nodded and dropped the light he had trained in my mouth and simply said, “Well, get out of here, then.”
I spent the whole drive to the hospital berating myself for getting myself treated and letting Linc just sit there in his stroller getting worse, looking at me with those sweet eyes, unable to tell me how bad he felt. This crazy balance we face as parents: take care of them but also take care of yourself so that you can take care of them. My equilibrium felt so utterly and irreparably off at that moment. I rushed into the E.R. room where Linc was already hooked up to a variety of machines, and Sam and I shared that aching look of here we go again.
Linc spent a week in the hospital for some kind of pneumonia that they could never quite diagnose. His grandmother flew in less than a day after he was admitted to watch his brother, Nico, a kindness to us in those uncertain early hours that generated the sort of cavernous gratitude that simply cannot be expressed adequately with words. Especially since, on Linc’s second day in, Sam had his own relapse that caused him to be violently ill and forbidden to visit the hospital for twenty four hours.
I remember spending long hours curled up in Linc’s crib with him, maneuvering wires so that he could lay on my shoulder or holding him upright while he slept so that his oxygen saturation would stay up in the acceptable numbers and get him sent home faster. By the end of it, he’d been given three different antibiotics, a round of oral steroids, and had been hooked every four hours to a vibration vest meant to pound the sickness out of his lungs.
When he got to come home, it was almost as exciting as the first day we got to bring him home from the NICU. The house felt complete again, happy, as if the sickness and sadness and worry had been wiped off of it just by his presence. Sam sent a picture of Lincoln taking a bath a few hours after he was released with a message that went something like:
“Look who seems to be feeling better…”
It was one of those eye opening experiences that make it very hard to keep focusing on today and very easy to start panicking about the what if’s. Paid medical leave (assuming you both have it, which we don’t) runs out fast when you have a hospital stay with a child who must have a parent by his side at all times. I see how sickness can quickly drive a family into bankruptcy. Even with insurance, the bills add up fast. Co-pays and prescriptions seem reasonable until you pay about 10 of them in two weeks time. It’s $100 for us to walk into an E.R. or urgent care clinic. Luckily, we had some tremendous help (more on that later), but still the experience shook me.
We have been lucky so far that Linc has not had the chronic illness that many kids with DS have. He’s had lots of colds, ear infections, some lung trouble, but this was our first experience with a prolonged hospital stay. For a kid who was supposed to have open heart surgery before the age of one, according to the scary statistics we were given after he was born, and who is considered to have a suppressed immune system, he has done remarkably well health-wise. But this experience reminded me that we never know what can happen, that any of that can change in a moment and we are only a few unexpected hospital stays from being in dire straits financially.
So, yet again, this is why we try so hard to be grateful for what we have and enjoy the here and now with both of our kids. Sometimes it’s tempting to focus on the lean lifestyle we have or the fancy stuff we could never afford, but who knows what might happen in the coming months or years that would cause us to look back on this time as one when we were blessed with both adequate finances and health, as a golden era lost to misfortune. Of course, we hope that doesn’t happen, but we simply don’t know what tomorrow holds. For that reason, I am proud of the moments when we do get it, when we rush outside to stare at the tiny little snowflakes in perfect health and the times when we drag ourselves outside to enjoy the snowstorm though we feel like we are at death’s door. It’s those moments that make me believe that no matter what happens in the near future, we will still look back on this as a golden era, the era of awestruck childhood and reckless toddler/pre-school adventure that we can never get back again.
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