Betsey's Diagnosis

The day Betsey was diagnosed is forever molded into a part of my brain. It was a very difficult day followed by an emotionally draining week and a terrible, horrible month.

Speedo and I had secretly planned a vacation for our troops to Florida- it was huge. We had never flown with all of them (there were 5 of them at the time, the baby almost 1) and we planned, packed, shopped and arranged on the sly... during school days, after bed time stories and whenever we found time, for months! And we made it happen and pulled it all off one freezing cold March morning (2:30am!).

We didn't realize how sick Betsey was during our stay, there were so many "explanations" we gave as to what was going on with her.

I noticed when I put sunscreen on her the first day she felt so thin. Kids grown in spurts-- they grow out, and then up. Out and up. She was growing. She was thinning out.

We had gotten tickets to one of the Yankees Spring Training games and drove over an hour to watch them play - the troops were thrilled! We probably stopped 3x on the way there for Bets to squat on the side of the road.... It was Florida, it was HOT and we were all drinking alot. We watched about half the game and then left; more bathroom breaks, nursing a baby in stadium seats, a couple other tired kids who would rather be swimming....

She developed a rash on the 3rd day there-- a yeast-like rash. It was so uncomfortable to her, I gave her Benadryl at night to help with the itching. It was surely from the sand in the wet bathing suit all day. The chlorine in the pool. We'd see the DR when we went home, no use in seeing one in FL for such a private matter.

We feasted on warm Krispy Kreme donuts every morning, fresh squeezed orange juice--yummy! Betsey always wanted any leftover donuts. Boy, if I could eat like that and not gain weight! Sugar galore. Stuff we wouldn't dream of giving the troops on a regular basis, but hey, we were on vacation!

The flight home was long. The troops were exhausted. Ready to be home. We touched down around 11pm. Drove home. Tucked all the littles in bed and were in bed ourselves by 2am.

First thing in the morning, after a great sleep in our own warm, cozy clean sheets, I made an appointment at the DR office for Betsey. She was so uncomfortable, poor thing. I honestly didn't think it was serious. The thoughts going through my head, worse case scenerio were something along the lines of bad yeast infection and a UTI. Antibiotics, not a problem-O.

We went in at 1:30 in the afternoon. We happened to see one of her friends there; he had a sore throat, and asked why we were there. I lied. I didn't think Betsey wanted me saying she had a rash! "Oh, her ear, "I told the dad. (I later called the mom to apologize for lying!)

In the room, while we waited for the DR, Betsey had to use the bathroom.... again. The DR came in and we went over symptoms. He wanted a urine sample, of course, and Betsey, I chuckled, would be more than happy to provide one, the camel she had become! But first we chatted. He threw out some scenerios. Yeast-yes, but unlikely at her age. UTI-perhaps. Sounds like it could be. Worms-yes, another possible cause. He instructed me on how to check for the worms should that be the diagnosis, and I shivered and swallowed hard thinking of all of us checking each other for worms in the dead of the night in the dark with flash lights. Oh the visual.

Today, I'd take the worms anyday.

He left with a urine sample and came back forever and a day later.

I can see his face. His soft eyes, his dark features. He blinked slowly as he sat down.

"What is it? Worms?!"

"Not worms, " he said with a slight giggle, in a very quiet voice.

"What?"

"She has some sugar in her urine...."

"OK. We just got home from Florida-we ate out every store with Krispy Kremes. I mean that."

He just kind of looked at me.

She was spilling a lot of sugar, he said. I asked for the whole "small, medium, large" depiction. Large, he said. A lot.

"Which means what?"

"Well, not completely sure until we get some blood tests. But diabetes. You need to get her to the ER right away."

I know I turned a few different colors at that point, I know because when I sit and think of this conversation on any given day, I turn the same colors and the feelings come right back. I had to put my head between my legs. I needed water. I asked him for water. I could not breathe. I started to shake. I didn't know how I was going to get to the ER let alone get up from that chair.

I don't remember leaving the office. I don't remember the drive home. I must have called Speedo. I remember being in the driveway waiting for my mother in law to come and drive me with Betsey to Yale. They would be expecting us. I remember when she got there I was shaking, pale and speaking nonsense, too fast, not making sense.... thought process out loud. I remember trying to stay together as I talked to my mother in law outside in the driveway, out of ear shot from the littles because I saw Betsey's thin face in the window looking outside. But I wasn't together, I was a wreck.

The ER was a nightmare. I called my brother's wife's father who happens to be an endocrynologist on the drive up and had him give me the diabetes 101 talk--what to expect, terminology crash course, numbers and their meanings.

I made some phone calls. I honestly thought that the more people I call that I knew had this disease, would be able to tell me that she didn't have it. Couldn't be. Not my kid. We just got back from a great trip. Things are good. I have a nursing baby at home and 4 other kids to take care of. Diabetes.... what?

The next 5 days were an absolute mush of blur. Mush of blur. I don't know who had half the troops. Speedo, we decided would stay overnight at the hospital with Betsey for the duration and I would come during the days. I couldn't leave the baby overnight, and all the other children really needed some sort of mother at home. Though I wasn't much of anything at that point. I did not cry for 3 days. I did not shower for 3 days. My laundry pile was so big it scared the dust bunnies. Our house was in a holding pattern and a disaster after a long trip away. I slept like a rock from 12 midnight until 5am for 4 days. Exhausted. Got up, got dressed, went to the hospital. One day, I couldn't find parking. Day 4. No parking. So I just parked. I didn't care where. The pediatrician who has seen the troops since #1 was coming in and I wanted to see him. I parked the car in some lot that said No Parking. Someone yelled at me on the way into the hospital and I lost it. I cried for the first time in days. And I couldn't stop.

I got a big orange sticker pasted on my drivers side window and drove around with that thing on for about 2 weeks before I realized it was there and needed to come off. Those days in the hospital were an all day long crash course on how to handle diabetes. Yes, type 1 diabetes. Just like that.

Weight loss. (Like 10-15 pounds on Betsey's little 7 year old self)
Excessive hunger.
Excessive thirst.

Hindsight--- I remember one day in particular before our trip, I was picking up the troops after school, and Betsey b-lined it right through all the moms and dads, straight to the water fountain. Passed right by me. Didn't even see me. Like she was in love with the long lost water fountain and hadn't had a drink in days! I said, "Wow, did you just have gym, what's that all about?"

And pictures ... pictures of her from the couple months beofre when her diabetes had started, she looks sooooo thin. How did I not know? How did I not know.

So they the hospital sends us home. Home with a child who is dependent on shots of insulin to keep her alive. And we have to prick her with this needle. We have to draw up the correct dose of insulin. This is what's going to keep her alive. This is how you mix the insulin, this is how you shake/roll it. This is the long lasting, don't mix it up on accident with the short lasting. Don't give her too much, she could get too much and go lo. She could go into a coma. She could seize. She could die. Take her home. Test her sugar every 4 hours or more. Wake her in the night to make sure she is OK, test her then, too. And her diet. Write everything down. Write down what she eats, when she eats, the carb counts in all of it. And call us daily between 12-4pm to go over insulin injections and changes to doses. Always have food for her when she is away from home. Carry the glucogon everywhere in case she passes out. Set up a plan at the school. Juice is now her medicine. Sugar is her enemy and her best friend.

What? When? huh?

AND, they said, send her right back to school. Just like that.

The first night home, I think I slept 2 hours. I was wide eyed thinking of how I was going to take care of this child.

We had a meeting set up at school with the nurses, the teachers, the pyscholgists, on Monday after the weekend.

I had notes to read them, I tried to explain how they were going to take care of her for me because I couldn't be there. Betsey needs this. She needs that. She is quiet so please, please make sure she is OK all the time. 2nd grade little girl. She just wants to play. I just want her to play.

The meeting ended; everyone except me and Speedo felt good about the plan. I could not believe I had to let her go.

Her teacher took her hand, walked her out of the room, down the hall. I jumped up, went to the door, watched them walk and when they were out of sight, I collapsed... onto the floor, into Speedo. He scooped me up and held me. I sobbed uncontrollably. How could I leave her here with these people who don't know how to take care of her when I don't even know how to take care of her.

I stayed at the school that day. Nursed the baby there. Walked in and out of the school. I was not doing well. Speedo was my rock. He was a silent, steady and calm supporter. He didn't budge. He was crying inside, falling apart, but waiting for me to pull it together. He was willing to give me days, weeks, months to get it together and tackle it and then he could sit and cry. His baby. His daughter. Inflicted with this horrible, terrible, devastating disease.

Betsey you wonder..... how was she? She was great. Didn't miss a beat. Continued straight A's. Continued to the beat of her own drum, just going along, mindful of her body, aware of her sugars and how she felt. A perfect patient. That's Betsey.

But don't get me wrong, she is not OK with it. She hates it.

She cries - not often, but when she does, it is heart wrenching. She is afraid to die. Just the other night, she came into our bed in the middle of the night, asked to sleep with us, told her Daddy she was scared. He asked if she had a bad dream. "No, " she said, "I'm afraid to die." This is an 11 year old child. She should not be thinking about death.

Her little body is forever changed because of the intrusions she must inflict upon herself with her pump and monitor and testing. Her little bum is scarred and bruised from needles penetrating it on a regular basis. Her finger tips get sore from testing. Her mind gets tired of numbers. One night I was testing her in the middle of the night, it was silent in her room, I did not speak. And she mumbled as I drew blood, "200? Correct that. That's high.... just correct it." She was asleep, and still thinking about diabetes. Her mind never escapes it.

Today, Betsey wears a pump. Is it easier? Absolutely. Is it better? Absolutely. Have we "settled" with this? Absolutely not. We appreciate the advances in the treatment of type 1, especially with insulin pump therapy and the Continuous Glucose Monitoring System our insurance, Connecticare, was so quick and willing to allow us to get for Betsey. But never, not for a second, will we be comfortable with her having this. Ever. Every day, the first thing I think of is, Is Betsey OK in the other room? There are many nights I still wake up to test her and make sure she is an appropriate number, not too high, not too low. And all day, I am attached to a phone, awaiting phone calls with blood sugar readings and "on" to know what to do, how to bolus, how to adjust, when to go into the school and change the infusion set. If you've ever talked on the phone with me, chances are, I've had to cut it short to take the call from the school nurse or Betsey.

Betsey tests her blood sugar an average of 9 times a day. She mainly test on her teeny tiny fingers. Some times more, sometimes less. She wears the insulin pump that delivers insulin 24 hours a day through a needle in her bum. On the other bum cheek she wears an even bigger cannula (1" long) that reads her interstitial fluid to give us the "real time" sensor readings delivered right to her pump without having to test [as much.] This device has been a life saver, literally, for overnight blood sugar readings and allows us to adjust her insulin basal rates through the night to keep her blood sugar in a safe range.

Night time is the worst. Betsey can not do sleep overs. Eventually, sure, she will be able to. But not yet. When I go to bed at night, I always have thoughts of the "what ifs" of her not waking up.... Can't help it. It's something that can happen silently, and I would never know. I've gone as far as to set the alarm clock with 2 different times each so Speedo and I get up and check her during the night during times when her blood sugars are so wacky and unpredictable.

She can't always have cake at parties or goodies at friends' houses. She can't always swim - she doesn't feel the sensations of a low blood sugar in the water and it this is such a scary situation. So if her blood sugar isn't high enough, she has to wait it out and watch the fun. She has to watch from the sidelines, seldom complaining.

This isn't fair. But this is her life. This is Betsey's life. And she is an inspiration to me, her siblings, her friends and those who don't even know her.