How We Got Here: Part 2 (and Where We’ve Been)

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.

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Mad Lib Monday # 1

So here it is, the first product of my new “game.” Brought to you this week by Treena. It was close, though… Amy had some great working answers, particularly the last one, as noted.

SUPERSTITIONS

Although we believe ourselves to be slovenly civilized, most of us are really fleas at heart, because we still believe in pasty superstitions that began while humans still lived in cheese. Some of these superstitions are:

1. If you spill salt, throw some over your left ear lobe, for mellow luck.

2. If a black lemur runs in front of you, you are in braised trouble.

3. If you break a ladle you will have 5.375 years of swollen luck.

4. Never extrude under a ladder.

5. If your tibia itches it means you will have a rusty visitor.

6. If you want to keep vampires away from you, always wear pork cracklins on a string
around your lip. Amy’s version was “cucumber” on a string around your “big
toe.”

Baby Girl

Six years ago after what seemed like the longest nine months of my life – 13 putrid weeks of round-the-clock nausea and five agonizing months of worrisome ultrasounds – and the shortest imagined delivery that almost ended in the car, Ava was born.

She was, perhaps, the most anticipated baby ever – she was planned, and she was the highly coveted girl…. albeit without the dilated right renal ureter that continues to be loosely followed by a CHOP urologist. the grandparents’ only other grandchild was my firstborn, Owen, so they were beyond thrilled for another and a GIRL!! My mother-in-law was beside herself; having had two boys, she’d missed out on the little dresses and pink frilly stuff and cool girlie sandals she now buys with frivolous abandon.

She was born amidst worry over what we didn’t know – would she be “normal”? What would this “hydronephrosis” mean for her life? She, like her brother, developed jaundice after birth, but required nearly two weeks on the wallaby blanket and frequent visits from a visiting nurse who would stick her foot to check her bilirubin levels. During those visits my newborn baby girl would kick her spindly legs and flush in fury the deepest shade of red. The nurse commented on how strong she was – a little fighter – as the moment her foot was touched she’d launch into her miniature tirade. Naive me – I beamed with pride and smiled nervously as her foot was again stuck for a blood sample. Little did I know this “little fighter” would one day face the biggest challenge of her young life and make every day a test of my own strength.

Over the days, weeks and years since, I’ve watched her evolve from a clingy momma’s girl who could not be touched, held or even looked at by anyone outside her inner circle (me, daddy and Owen)… slowly to open her arms my mom and mother-in-law and, after two years or so, begin to talk to and even hug my dad. It would take nearly two more years before she would even talk to my brother or her father’s brother.

Publically she is polite, quiet and shy – leaving all who meet her to comment on her sweetness and how cute she is (and after they walk away she says indignantly, “I am NOT cute”). She will never let on how spirited she truly is; she reserves her most challenging moments for lucky me. One of my friends once called and was shocked to learn the source of all the ruckus in the background, as Ava ran through the house screaming at the top of her lungs.

At home and inside her ever-widening comfort zone she is silly, loud and boisterous, singing little songs she’s either learned or made up, doing her best Beyonce butt-shake and getting up in your face and invading personal space. She has a quick temper that turns aggressive when things don’t go her way, particularly when she’s engaged in Wii with her brother. She drives me crazy with her demands and insolent refusal to cooperate when it is most critical, dodging blood glucose tests as I chase her through the house and screaming like a homicide victim when I catch her. She is not above fearlessly boycotting food just minutes after an insulin bolus for 60 carbs, for such ridiculous infringements like Owen smiling at her, or my refusal to to let her eat dessert first.

She is what my mother warned me would be a “challenging” child, and while it is frustrating at all levels for all of us from time to time… it is this tough-as-nails constitution that is her source of strength through all the things no child should have to endure from the tender age of two. She endured 5-6 insulin shots a day for the first year of her diabetes life, having to wait for food and watching other little kids stuff themselves with the cholesterol-raising cupcakes and cookies that she so craves but knows full well today she should not have all the time. She has had to endure up to 17 finger sticks a day to check her blood glucose, hundreds of insulin pump set changes… with (as she already understands) no end in sight… and yes – there are many days when she’s just had enough. What would you feel??

And yet, on the flip side, with those she is closest to, she is sensitive and affectionate, squeezing her brother in a bone-crushing hug while declaring “I love you… you’re the BEST brudder.” She has an almost intolerable need to be close to me, and I have to remind myself that one day I will miss her desire to sit on my lap for lessons or just a snuggle. She is warm and open, and often mischievous with those she knows well… family or friends. She has a fantastic sense of humor, and a joyful laugh … and it doesn’t matter whether you share the joke or not. Often, NOT sharing the joke somehow increases her hysteria.

She is smart as a whip and a fast learner, grasping academics with ease… and quick-witted with lightning-fast delivery of comments more likely to emerge from a 14-year-old. Her sense of logic is sometimes far beyond her years, how she rationalizes concepts you’d never expect her to understand, like how she will take over her diabetes care and when, who she will see in heaven and who will go first, whether or not she’ll have babies and who I will marry next (no kidding). I cannot at this very moment think of a single specific thing she said recently that blew me away, but believe me -they are daily and numerous. (I’ll blame it on sleep-deprivation.)

I celebrate my spirited daughter… with all her unnerving, annoying and endearing qualities… she is in so many ways my “mini-me,” which is probably the source of my constant frustration and empty wine bottles. It took me nearly 3 weeks to write this to my satisfaction.. I kept stumbling for the right words as she drove me to the edge of madness where screaming is the only method of communication, making it so difficult to adequately express how special she is to me and how I love her so… equally as much as her brother, but differently. So, this is the best I can do, today.

Happy Birthday Baby Girl! I love you and the “best mom” is only as good as her best girl.
May 21, 2005 at 3:24am
7lbs. 5oz., 22 inches