Yes it was a shock to learn our 2-year-old had T1 diabetes. Yes it was the single most stressful event to ever occur in my life to date. We’d had a taste of what it was like to sit hours in an emergency room with a small and very sick child, when a month of persistent fevers finally landed 17-month-old Owen in the hospital for “further evaluation.” It was hell for us as first time parents, our feverish and sweaty little boy drifting in and out of sleep, an IV drip to hydrate him, a battery of blood tests which showed nothing. But he was admitted for the night and it was a horrible sleepless night during which at some point I prayed my first real (and answered!) prayer to God – to please, please make him well enough to let us go home today.
When a child is diagnosed with diabetes it is said that the whole family has diabetes, because of all the necessary lifestyle changes. We began with a very rigid schedule that required insulin shots and meals with military precision:
8am – blood check, must eat breakfast in 30 minutes, THEN insulin shot given within 15 minutes
10am – morning snack 7-15 carbs (no insulin given)
12pm – blood check, then lunch, 15-20 carbs (no insulin given)
3pm – afternoon snack 7-15 carbs (no insulin given)
6pm – blood check, must eat dinner in 30 minutes, THEN insulin shot within 15 minutes
8-8:30pm – blood check, bedtime snack 7-15 carbs
11pm – basal insulin shot only
This regimen we chose used NPH insulin, an intermediate acting basal insulin, mostly because we thought 3 insulin shots a day (one of which she’d hopefully sleep through) seemed a hell of a lot more manageable than the 6-shot regimen of the far superior long-acting Lantus insulin plan. Because of her age we were required to do “post-meal” dosing, since we never knew how much she’d actually eat, and the fast-acting insulin dose is calculated to the number of carbs she ate. Still, it sure seemed like an awful lot of eating going on. Not to mention the fact that those meals HAD to be finished in 30 minutes. Those 3 other snacks were mandatory, NOT optional. Imagine trying to force feed a 2-year-old healthy carb snacks … and let me just say there were plenty of junk-food binges “just” to get her to eat. This NPH program was the absolute worst… her blood sugars resembled a ride on the runaway mouse… shooting up to heights in the 300s and well over 400’s and then plummeting to those somersaulting stomach drops of 60, or 35. And, most of the time, nothing in between. It wouldn’t take long, incidentally, til we made the switch to Lantus – like a raft on a lazy river, where we found control so much better. And then, a year later, to the insulin pump which was like getting a second chance at life.
The husband lost nearly 30 pounds over the first emotionally tumultuous month. And, because I was home with her all day and she clung to me like a baby gorilla, I never ate. I could eat only when she did and, (in those early days) because I spent the entire meal crawling around under the table or around the house with a plate and a forkful of food, that meant AFTER she ate. I’d be so stressed by the time she finally ate everything I had lost my appetite. I dropped down to 105, the skinniest I’ve ever been since high school.
There was a tremendous amount of fighting during that first year: fighting with Ava to get her shots without jerking away just at the moment of injection and causing an incalculable spillage of insulin so minuscule, and yet so vital to her life and health. Insulin you can’t just “give again,” but instead have to wait hours before retesting to see just how high she will go. Fighting with Owen, who was initially freaked out by the whole hospital experience, seeing his baby sister with IV lines coming out of both arms and even her leg at one point and being separated from me for 5 days. He didn’t understand the necessity of eating on a schedule, she became the center of attention and the focus of most of the arguments between his dad and me, and her deafening cries over every shot would send him scattering for quieter rooms in the house.
Fighting with my husband. In retrospect, we were both so freaked out and stressed and exhausted and afraid… how could this not put a strain on our relationship? Some families do pull together and become stronger in crisis; but there are a good many more who fall apart under the mountain of responsibility and accountability for a disease such as this, and we would fulfill that statistic. In meeting another family who’d been through it a few years prior, we learned that they too experienced a lot of fighting. Yelling at each other. Yelling at the child who HAS to eat and take insulin to stay alive. Fighting over who will do what. Fighting over who’s responsible for her eating. Who’s giving the shot this time. Why didn’t you do it this way? Why didn’t you do it that way? We were warned in the hospital about becoming the “diabetes parent”… meaning, one parent takes it all on themselves. That became Me.
I was the strong one, the “backbone,” as my husband used to say. He, on the other hand, fell into a depression so deep it was almost impossible to climb out of it. He was filled with worry over every minute of her day. And, inadvertently, he put more and more responsibility on me for the success – or failure – of her care. Not a fun place to live. Why wasn’t I depressed? Depression doesn’t suit me… it’s not a jab at him, really, I just mean that I just don’t experience it. I experience tons of emotions, many of them plenty raw, but I deal with them in good time and remember where my focus has to be. It is why, I suppose, I am all about JOY. My daughter – and my son – need me. And they need me to be strong in the face of overwhelming storms. It’s not a choice. I just AM.
And so the day came in the fall of 2009, when Ava was finally ready for preschool. She was timid and nervous, but I was excited to set her free to fly on her own… she hooked back up with a friend she’d made a brief but lasting impression with the year prior (which she ended up dropping out of) and they became inseparable. She had two terrific teachers whom I trusted completely. She made friends. She made crafts. She had snacks. I was there. I sat in the Sunday school classrooms upstairs, and enjoyed nearly 2 solid hours to myself for the first time since her diagnosis two years before. I did the testing, I counted the snack carbs, gave her a bolus and sent her back to the class with instructions for the teachers about when and how much. They were so supportive. But, although Ava appeared happy and well-adjusted there, her blood sugars were all over the place. Always high at preschool, I had to determine EITHER to correct the high blood sugar only and give the snack without a food bolus, or give a food bolus and NO correction for the high. It was always a gamble. Sometimes it worked out, but more often than not she’d go low. And only an hour in too (insulin peaks in two hours). Scary.
And that’s how she ended up home-schooled at Pa Cyber Charter School this past year for Kindergarten. Not because I was just aching to home school her. Her father worried about her safety in a brick-and-mortar school, worried she wouldn’t “feel” her lows (as so many young kids do not) or if she did, that she would be too timid to tell her teacher. And this time, I wouldn’t be in another room down the hall, or nearby. He insisted that I home school her and, honestly, by mid-summer I was equally concerned and convinced it was the right thing to do – if it didn’t kill me. It was actually a relief to know I could protect her a little bit longer… but as you already know, that feeling lasted a whole… week.
We’ve come a long way from that first A1c on June 18th, 2007… it was 9.0. Today she is healthy, active, strong – her A1c is 6.1 (non-diabetics fall around a 5 or below)- and full of the piss-and-vinegar that will ensure her ability to cope with this miserable disease as long as we still wait for the cure. I have never met a T1 kid who doesn’t have “it,” that something intangible that marks them special and – I believe – destined for greatness in spite of the challenges they face every day of their young lives. She is such a warrior princess, Ava. She is stronger than I am. This I know.
3 thoughts on “How We Got Here: Part 2 (and Where We’ve Been)”
I can relate to this in so many ways tara just not with diabetes. It feels like I wrote this!! I admire you and you are a great Mom. Ava is a warrior b/c she has a Warrior Mama!! 🙂 xo shelly davidson
Thank you for your great work and… this Blog is a really pleasant surprise! Keep up the good work!
Thanks for your support! I appreciate the feedback!