Last Father's Day, we woke up happy and relaxed. I was well on the road to recovery from postpartum depression, Collin had started sleeping most of the night in his own bed, and we were going to celebrate Kyle's first Father's Day with blueberry pancakes for breakfast and a lunch with his dad and brother. We went and got Collin and brought him to lay with us for a while, and then he started doing that same strange jerking we had noticed the day before. It had been going on for some time, but seemed to be getting more frequent and forceful. Kyle was the one who said what we were both thinking: "I don't think that's right." For some reason I will never know, I opened my laptop, typed in "baby seizures", and our lives instantly changed.
The first video I saw was of a baby doing exactly what Collin had been doing for weeks, and in the comments, the person wrote something to the effect of: if your baby is doing this, calmly pack a bag and go straight to the closest children's hospital. We read the term "Infantile Spasms" for the first time and phrases like "catastrophic seizure disorder" and "poor prognosis" and "mental retardation". There was shock, lots of crying, and hard conversations. I couldn't stop telling Kyle how sorry I was that this had happened on his first Father's Day. He was sorry that it happened right as I was starting to heal. And then, somehow, we went on with our day. I have no idea how. I made pancakes. I served lunch. My whole self felt like skin after a burn - there's the initial jolt of pain, then the lull of numbness, and then the waves of actual burning start. They wash over and make it hard to think. I was sick to my stomach all day. Everything felt hazy from the burning.
The next day, we got in for an early EEG and didn't even make it all the way through before they had paged the neurologist on call (Dr. Awesome, thank goodness) and escorted us to express check-in. But we didn't know any of that yet on Sunday. On Sunday, we were just stuck with our fears and our grief.
So this Father's Day was very significant for us. The initial plans were to celebrate with some special activities, but then Collin's seizures came back this week, which makes that kind of planning tough. Instead, we made plans that turned out to be even better: we had the calmest, most 'normal' day possible. A special omelet breakfast, lots of down time together as a family, cheap lunch at our favorite burrito place, a diaper run to Target together, naps, and an evening at the pool.
And I just feel so, so thankful. I look back at our raw, terrified selves this time last year and can finally see the extent of growth that has happened since then: the priorities that have shifted, the insecurities that have shriveled up. Last Father's Day, we were being burned alive by our fear of what was to come, by our grief over losing precious hopes and expectations. This Father's Day, even though we still struggle, we are full of appreciation for our Collin, of joy over all of the things he's accomplished that we didn't know if we would ever do and excitement for new things he will show us.
And let's just be clear about how all of this came about. It's not because we're good people or because we worked so hard or are special in any way. This could just as easily have destroyed us. It was a gift. It was grace. It was God at work in people who were too broken to make it through the daily necessities, much less crawl up out of that mire onto solid ground again. And yet here we are, not on the other side but in the thick of it still, but living in hope and deep love for our precious son. We were able to reclaim this Father's Day because God brought good and beautiful things from horrible and crushing things. The more I experience, the more I become convinced that that's the only way this kind of change can happen.