T1D: A Mother’s Perspective

“We need to go to the ER,” I quickly told my husband, who was just walking through the door from working night shift. I stood there, cradling our 21 month old son, who used to be a chubby little ball of energy, but now I could feel every bone in his tiny, lethargic body.

I knew he was sick weeks before this. He was throwing up, constantly crying, endlessly thirsty, and losing weight at a terrifying rate. I shared my concerns with friends and family, and they tried to ease my worries with, “He’s just going through a growth spurt.” Of course the people close to us didn’t want to believe something was wrong. I didn’t want to believe it either.

We took him to see our pediatrician. She told us to “keep an eye on it,” and set us up with an endocrinologist appointment for eight days later, because his symptoms pointed to diabetes. I don’t have to tell you what would have happened if we waited those eight days before seeking out medical attention on our own.

We were silent on the way to the hospital that day, except when I whispered, “Do you hope it’s diabetes and not cancer?” “Yes,” was my husbands hushed response. I didn’t understand enough about diabetes to know if it was worse or better than cancer, but now I know it’s just different all together. My whole body was buzzing with nerves, and my stomach kept tightening at the thought of my son being seriously ill.

When we walked through the emergency room doors, they took us into triage immediately. We rattled off his symptoms, and the nurse hastily grabbed a blood glucose meter and tested him. “His blood sugar is very high. They will take you back quickly.” Those words meant very little to us then. Now they mean everything to us.

Once we were taken back, the doctor came in to speak with us. He was calm, and said a lot of words and acronyms that we never heard before. It all felt like a blur, and I think we were both looking for some kind of confirmation. Through tears my husband stated, “Childhood cancer runs in my family.” The doctor gave us a direct answer, “No, he does not have cancer. Your son has type 1 diabetes.”

And then I sobbed. Just for a minute, but I let myself feel the wave of relief that he wasn’t terminally sick, and the suffocating fear of this diagnosis that I knew nothing about. That was the last time I cried over T1D.

The next week, we stayed in the hospital and learned everything we could possibly cram in about T1D and our new lifestyle. It was a lot, but I felt confident to take it on.

I know what you’re thinking, “They are going to take care of this little boy with everything they have, and he is going to be the center of their world, and everything is going to be just fine!” That’s true, but PLOT TWIST! At home we had two little girls. One was 2 years old, and the other 2 months.

There is already so much anxiety associated with having a newborn, and I had to leave her for an entire week, to care for our other baby who we almost lost.

And if I’m being totally honest, I was also struggling with postpartum depression. I had three kids under three, and I felt like I was drowning in the weight of keeping them all safe. I was throwing myself pity parties pretty much every day after the baby was born.

But when my son was diagnosed, something changed inside of me. I no longer had room to feel sorry for myself. My son needed me to literally keep him alive, with my full attention, 24 hours each day, with no breaks or vacation.

You’d think this would have tipped me over the edge of full blown depression. And, believe me, my mind has danced around the topic, but I didn’t let myself go there. It actually pulled me out of the baby blues fog, and gave my day-to-day life a clear purpose.

Sometimes I think back to those first few months, and honestly don’t know how I did it. He was just a baby, not even two yet, and we didn’t have any of the amazing technology we do now.

Nighttime terrified me. If I let myself, I could have allowed my anxiety to totally consume me. The thought of losing him in his sleep just wasn’t an option. So, for six straight months, every night was the same routine.

7pm – Put the two older kids to bed

7:30pm – The baby was still sleeping in our room, so I’d lay her down

8pm – Test my son’s blood sugar. Treat high/low if needed

10pm – Test again. Also, I’d set my phone alarm in two hour increments to test throughout the night.

10:30pm – I would go to bed, only to have the baby wake up to eat

12am – First alarm would go off, which would wake the baby. My husband would test our son, and I would console the baby

2am – Repeat 12am

4am – Repeat 12am

6am- Everyone would get up for the day

I was exhausted, which created a haze around those early months. I’m not so sure this was a terrible thing. It makes the scary nap time lows, our first stomach bug, and all the other negative memories fuzzy around the edges.

But one thing that stays crystal clear is how tough my little guy was through everything. Because of my anxiety over needing to know his blood sugar constantly, I was pricking his finger 15-25 times every single day. We were on a continuous rollercoaster, either low or high, and he’d just suck down another juice box, or accept another shot of insulin. Never complaining. Never crying.

Our diabetes management looks a lot different now. He wears a Dexcom G6 and an Omnipod, which means very few to almost no finger sticks and no more shots. My anxiety levels have dipped drastically, and I’ve even slept through the night a few times!

But there is a constant nagging in the back of my mind that never goes away, of all the “what ifs?” I’m on constant guard in case I need to diffuse an emergency, that could happen at any time or place. I am addicted to knowing his number, but being able to just glance at my phone and see it has created a peace in me.

Of course, it is easy to slip into a downward spiral of wishing life could go back to what it was before, but there is no point in dwelling. I made a decision immediately after diagnosis that I would take this on from a positive standpoint, and harness all the angry, worried, scared feelings, and use that momentum to bring awareness to type 1. And that’s when I decided to write about it.

I began blogging, and sharing our stories. Some are about T1D, others aren’t, but something incredible happened. I started forcing myself to take time to do something I loved, and it healed open emotional wounds I was carrying with me. And I’ll let you in on a little secret. I lure readers in by mostly writing humor pieces that appeal to the general public, but every Tuesday BAM! Type 1 Tuesday, and everybody’s getting an education on the disease that turned our world upside down.

Thinking of how far we’ve come makes me unbelievably proud. Each day, my son is able to enjoy his childhood, because I put the weight of the entire disease on me, and that’s fine, because I can handle it. I truly believe being a type 1 parent is not just doing what you have to do, it is realizing you’re capable of doing anything.

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