I can remember the timeline leading up to it with startling clarity, even if the emotional memory is a big fat blank. I can replay those few weeks between Henry’s birth and Penny’s diagnosis like I’m watching a movie, a movie about someone else, some other birth, some other family. I’m sure it’s some kind of self protection that I can’t remember how any of it feels, even the good parts.
I was in labour for weeks, contractions all the time, walking around 3, 4, 5cm dilated, anxious about when it would actually be time. Penny was having a tough time at night, night terrors and wetting the bed, again and again. When we finally went to the hospital, Henry was born within minutes of us leaving triage. My water broke, and a few pushes later, he was there, nine pounds and change. A few days in the hospital, some trouble with baby's low blood sugar somewhat ironically, and we were home. I vaguely remember being very distraught about having to give him formula via a supplemental system, and looking back with everything I know now, I feel pretty ridiculous about how I reacted.
Home, with Jim on paternity leave for six weeks, was supposed to be glorious. I remember thinking about how much we would get done and how much family time we would spend together. The first afternoon we were all home together Jim and I actually talked about Penny and the far off possibility of Type 1, a vague concept to us at that point. I even got a meter I had from when I had gestational diabetes and tried to test her primarily because I was sure it would make me feel better, but she got really upset and I just gave up. I called her pediatrician instead and scheduled her 3 year well-child visit, which was several months over due. We ended up with a two week visit for Henry in the morning and a three year visit for Penny in the afternoon of the same day. For the next two weeks we just plugged along, taking Olivia to school, up at night with a newborn, just a blurry haze of diapers, breastfeeding, packing lunches, ordering take out, tired and grateful to have the time to be together. Henry was a joy, easy and affable, even at a few days old. We had an appointment with Olivia’s psychologist and Henry, content in the stroller bassinet in the corner of the office, laughed after the adults in the room did, at only a few days old. The doctor, an expert in infant and child development remarked on how extraordinary it was for an infant that young to already be engaging socially through laughter.
On the day of the peds appointments, it made the most sense for me to take Henry in the morning and for Jim to take Penny in the afternoon, while I picked Olivia up from school. Henry’s appointment was a nonevent. He had surpassed his birth weight and was apparently thriving. I had no anxiety about Penny’s appointment because she was clearly fine, and any worry or concern we had was unfounded. They were going to check her urine, laugh at us for being over cautious. I remember talking to Jim on the phone as I pulled up in front of Olivia’s school. "There is something weird," he told me, "but they are going to send it to the lab, and it is probably nothing." A dear friend happened to be in front of the school at the same moment. I mentioned my concern to her briefly and she assured me it was nothing. For some reason, this part always sticks out, the worry on her face paired with her desire to comfort me in the moment.
We met up at home. We put the kids to bed. We made rice and melted Trader Joe's frozen orange chicken. We sat on the couch. Jim got an email with Penny's lab results. Minutes later the phone rang. Time to go. Pack a bag. You'll be there a few days. I might never eat orange chicken again.
From there I have only snapshots. Penny in a hospital bed. Needles so tiny I can hardly see them. Nurses cooing over Henry sleeping in the stroller bassinet in Penny's room. Being baffled that the hospital cafeteria would give her pancakes but not fresh fruit. Jim holding me. Me holding Jim. Both of us holding Olivia trying to explain things neither of us fully understood yet. Henry laughing. My dad and my stepmom and Jim's mom and dad showing up to fill in the gaps at a time when Jim and I were almost all gaps. Nursing Henry in our bed while Penny slept beside him, her body curled around him, her breathing slow and even. Counting her breaths, reassuring myself. She's breathing. He's breathing. I'm breathing. We are all still alive.
I lost his entire first year. I don't remember when Henry rolled over. I don't remember when he crawled or walked or started solids. I couldn't tell you when he cut his first tooth, how he handled his first fever, or even what his first word was. That year is another entry on the list of things Type 1 stole from me. I don't remember so much about that first year of his life. It is lost to me in a haze of panic and stress that I am still recovering from.
I do remember his laugh. I do remember that he was alway there, in my arms, with his heart on his sleeve and his easy smile. I do remember the weight of his tiny body against mine in the middle of the night when I was sure I could not ever again take a full breath, reminding me that he was breathing. I am breathing. We are all still alive.