Now and then, either when I can’t help it or I’m feeling brave, I’ll briefly allude to Ella’s hospitalization.
But now, 2 and a half years later, I feel it’s time to talk about her diagnosis.
My earliest memory is the closest I’ve ever come to a near death experience.
It was the summer before I turned 4. We were at a family friend’s house for a Fourth of July party and I was standing by their busy pool, all alone. A boy, who I remember having a reputation as a trouble maker, was running around pushing grown ups into the pool. This mischief had nothing to do with me until I was suddenly flying. Then sinking. I don’t think I’d ever been under water until that moment. I remember the rush of activity to get me out– my sisters grabbing hold of me before fighting over who should save me. At some point in this tug of war, I ended up back at the bottom of the pool. All alone again. Until in the blurry distance, I saw a shape with a jet black halo and I knew it was my mom. I don’t remember not being able to breathe but I remember knowing it was her and not being afraid. She was 7 months pregnant with her 7th child and she’s the one who came to my rescue.
Turns out, there are just some things only a mother can do.
Growing up, all I ever wanted to be was a mother, a stay at home mom. Other dreams- writer, home decorator, party planner, curator of childhood- came later but the earliest, most constant ambition was motherhood. I was embarrassed by this, thinking it was weak or the easy way out of having a Real Job. Part of me felt like I was a coward and motherhood was my chosen hiding place.
Those fears were, of course, ridiculous. Motherhood, easy! Cowardly! Not a Real Job! But that’s the thing– you don’t even get a glimpse of what it means until one day, you’re on your way home with more people than when you left it. Life’s most pronounced before and after.
I had Ella five days before my 25th birthday. I didn’t know that having her would turn the dial on my perfectionist tendencies all the way up to full fledged OCD. That meal times and bedtimes and routines and schedules would become the metric for whether or not I was doing my job well. Not easy when you’re dealing with something as inconsistent as a newborn baby. But still, I followed my instincts. Keeping track of everything, noting patterns so that successes could be recreated and failures could be avoided. I didn’t always like this about myself; the strict routines could feel like a self-imposed prison. But instincts can’t be helped– you don’t know what motherhood is going to turn you into until you’re already there.
And I didn’t know just how much it would cost me until I was sitting in the emergency room nursing my son as a doctor told us that our daughter, my baby girl, had Type 1 Diabetes.
There I was, doing something for Jack that only I could do, with Ella sitting exposed and unprotected in a hospital bed. There was no nursing cover, no shield I could put between her and the world, her and this diagnosis. Motherhood is a kingdom where you have all this power but no control.
And for weeks before that Saturday, I couldn’t control Ella’s thirst. She was terribly, insatiably thirsty all of the time. I thought it was a habit we needed to break. Kids go through phases, right? And no one else had mentioned Ella acting differently so I thought it might be my anxious nature playing its usual tricks. Maybe mother didn’t know best because the mother was me. I tried my own OCD-approved strategies: alarms, distractions, schedules. Nothing worked. It’s a phase, I still told myself. I even called her doctor’s office and since she had no other symptoms, they said she was probably fine. See? It’s a phase. But like I said, instincts can’t be helped. And even as I tried to will it away, I sensed the danger creeping in like a dark shadow.
In my denial, I vaguely remembered this tragic story I’d followed in 2015 about a little girl who died from complications from a late diagnosis of Type 1 Diabetes. I thought I remembered her mom saying she’d been thirsty in the days leading up to the catastrophe that would eventually take her only daughter’s life. That mother’s honesty saved our daughter, saving me.
So I want to be honest. For years, I’ve struggled with how much to say. At the time, I said nothing because the community I was trying to build on this platform didn’t seem real and Ella’s diagnosis was almost too real. Certainly too painful. I also couldn’t fully explain the devastation I felt. Type 1 Diabetes is not the worst news you can receive at a children’s hospital. But I felt blindsided, betrayed. Like this was specifically designed to hurt me where I was weakest. That first night, as Ella slept peacefully while machines beeped around her, I was up 3 am, just scrolling through the thousands of pictures I had taken of her over the years. Our life before this diagnosis. Where nothing was wrong, nothing was known, and everything was fine. The worst before and after I had ever faced. This was a departure from the plan, the perfect childhood I had been trying to create. Now Ella and Jack would get a T1D mom. An angry, fearful, broken shell.
But I think about that little girl who died in 2015. What if I hadn’t seen her story, read her mother’s words? I think about my own experience with gestational diabetes, which accustomed me to finger pricks and nutrition labels. That random week when Ella kept spitting up apple juice so we stopped giving her sugary drinks altogether, months before they could have had fatal consequences. A near death experience, which makes me shudder. I think about the OCD that I hated. The OCD that couldn’t spare Ella from this disease but made the transition to managing it for her nearly seamless. When she was diagnosed, I did feel blindsided and betrayed but the truth is I had been prepared for years, if not my whole life, for this experience. Sending Ella to me, an obsessive compulsive, pattern-watching mom, was the plan.
When I was a teenager, during some after-school car ride, I asked my mom about that time I was pushed into the pool. I laughed at her retelling, as it matched exactly with my recollection. That boy was, in fact, a troublemaker and she watched in disbelief as I flew, and then sank to the bottom. After watching the failed attempts to get me out, she jumped into the water herself, seeing my bulging eyes at the bottom of the pool. When I asked her how she even knew I was in the water, she laughed and said, “Oh I had been watching that boy and I knew exactly where you were.” She, too, had seen the future, sensed the danger creeping closer. There are just some things only a mother can do.
My earliest memory was the closest I’ve ever come to a near death experience but Ella’s diagnosis felt a lot closer to drowning. It changed me, hurt me, broke me for a long time. I didn’t know that this is what you’re signing up for; you just don’t know what motherhood is going to do to you. It’s changed me, hurt me, broken me. It’s also strengthened me, turning my fears into knowledge and anger into resilience. It’s blessed me with my wildest dreams and my worst nightmares. It’s a burden and a privilege. In motherhood, there are moments you may sink but you’ll learn to fly.
xo
eb