Ainsley just turned 3.  A 3-year-old’s mind is an interesting place. Especially when there’s a handy big sister to teach you new concepts. Ellory likes to pretend that there are monsters under the bed, spiders hanging from the ceiling, and witches in the closet. This used to scare Ainsley until Ellory also taught her empowerment. Their conversations go like this:

<Whispers>

“Ainsley, there’s a huge monster under the bed.”

“There IS?  OH NO.”

“It’s ok, Ainsley. We’ll get rid of that monster. We’ll wack him and smash him and chop him into 4 pieces and send the pieces to the middle of nowhere.”

Ainsley’s not afraid of monsters anymore, and her worst threat has become, “If you don’t stop doing that, I’ll put you in the middle of nowhere!”

This is the context for our conversation earlier tonight. Ainsley, for the very first time, ripped out her pump site. I’m not sure how it happened; she says she did it on purpose but I’d be surprised. Either way, she wears a steel set so it must have hurt like a mother.  Unfortunately, tonight was not a pump change night, so we had to do an unnecessary set change, something that, lately, is always a horrible undertaking.

I won’t drag you through the reenactment of my attempts to avoid the inevitable. It was the usual –  rationale did not prevail.

As usual, Ainsley became upset. She hid from me, she whimpered, she cried. I remained sympathetic yet implaccable. I try to keep it undramatic, at least from my end. A bit of good advice I heard once, that I always try to employ, is to make it just another chore, like brushing your teeth. It’s something you probably don’t love, but still something you’ve got to do. We try for that tone – let’s just get it over with and move on to something better.  That’s all well and good when you’re 33, and completely meaningless when you’re 3.

Finally, as usual, Greg had to pin her down while I applied her set as fast as possible. This makes her feel totally violated, understandably. She hates it that we force her to do something painful, something that she absolutely does not want to do with as much passion as its possible for a 3yo to have. But because we can overpower her, she has to do it. She doesn’t understand or care about any of the whys of it.

Afterward she locked herself in my room and I let her. I gave her some space and after a while she came out and asked me to hold her. Then,

“Mom, I want you to take me and put me in the middle of nowhere.”

“WHY, sweetie?”

“Because there I won’t have diabetes anymore or have to wear a pump anymore.”  Then her eyes well with tears as she says, “But then I would be all alone and I wouldn’t get to see you anymore and I would miss you.”

This is a conversation that should never happen. These are thoughts that should not be in the mind of a 3yo child.  In her world, the worst thing you can do to someone is to send them to the middle of nowhere, and she would rather go there than have diabetes. Worse, and so heartbreakingly bravely, she assumed that she would have to go it alone. Why? Because she’s the only one of us who has diabetes.  Now she’s thinking that she has to choose between having diabetes, and having a family. That is so fundamentally wrong, so horribly horribly awful, it crushes my spirit as a mother and as a person.

I lifted her up and looked her straight in the eyes and assured her of the only thing I could.

“Ainsley, you will never be alone. I will always ALWAYS be there with you, no matter what. We stay together. Ok?”

“Ok.” Looking greatly relieved and encouraged, she ran off for movie night. And then Greg and I went downstairs and cried.  This is what living with diabetes is really like.

A few weeks ago we took our kids to Disneyland for the very first time. This was somewhat ambitious of us as Ainsley has only been diagnosed for 8 months, she’s only 2 years old, and she’s still wildly honeymooning.  Still, I have learned over these months that we cannot live in fear and that, as a parent, I will not allow diabetes to take the experience of life away from my daughter. Thus our mantra has pretty much become, “If we can’t get rid of you, then you’ll just have to come along.” And off we went.

We didn’t go without some serious preparation, however. The week before we left, I combed our support group archives, diabetes forums, Twitter. I read all the tips and tricks and, most of all, I read about mini-g. I had heard about it before and thought to myself, we really need to get set up for that,  just in case but I’d never done anything about it.  Before we left, I filled some extra glucagon prescriptions and we loaded up an insulated pack with regular insulin syringes and the glucagon. And thought no more about it.

I don’t know if it was the travel or the flu the week before or the alignment of the stars and moon but pretty much as soon as we set out on that trip Ainsley’s BGs went all to hell. High highs, plunging lows – we were on the BG Scream Machine.  Our first day in the park, I cried as I stood in the middle of Adventureland because I was watching the Dex instead of my daughters’ faces, and I couldn’t get Ainsley’s sugars under control no matter what I did, and I knew that she couldn’t feel well at a 400 or a 40, and diabetes was ruining the most anticipated trip of all time.

Eventually, a little bell rang in my mind and said, “Remember, when you’re riding the BG roller coaster and can’t get off, the basals are probably really wrong.”  Thank god for that small voice of experience. At her age  - and honeymooning –  Ainsley’s basals rarely stay the same for any length of time and on occasion we have seen this kind of thing happen when there was a big change. I decided to go whole hog and ratchet the basal way up because we were only in Disneyland for 3 days and I was damned if I was going to lose another minute. We reverted to known foods and low carb and that night I stayed up all night watching the Dex and tuning the basals. It’s important to note that I couldn’t have done this without the Dex. Not at all. It would have taken way longer and wouldn’t have been safe. I <3 CGM technology.

The next morning as we packed our diabetes backpack for the day, we agreed to pre-load some syringes with glucagon. Just in case. Off we went and we had a much better day. The new basals (double and triple her old settings) were performing great and we were seeing much less variability.

That night we had reservations for a (very expensive) dinner at Ariel’s Grotto which afforded us with premium seating to Ellory’s Great Disneyland Dream – the World of Color show. It’s a very cool outdoor show in California Adventure Park all done with giant fountains and light projections.  The dinner at Ariel’s Grotto is prixe fixe; I was prepared for this and had researched what would be served as much as possible. I knew a huge dessert tray would come out at the end. I even asked the chef if there was any possibility of carb counts – no go. Ainsley had been doing so great all day that we decided to just let the kids go whole hog and eat themselves sick. Ainsley was beside herself with joy – she ate tiramisu, white chocolate film strips, chocolate cups filled with mousse. And I sat by watching, tacking on another 10 carbs here, 20 carbs there, until we were done. We went off to wait for the show to begin.

The Dex was showing Ainsley to be in the 200s which I thought was pretty much to be expected and not too bad, actually. She and a bunch of other children were running around playing while we waited. Something about her behavior must have been off, some small thing that triggered in my subconcious and I thought, something’s not right. We tested and instead of being in the 200s, she was 90, now with double arrows straight down on the Dexcom. Not immediately a cause for panic, we checked the IOB  - 2.5 units onboard. For Ainsley, this is a very large amount of insulin. An amount so large that I didn’t think that at 90 with double arrows down we could catch it up fast enough with food, definitely not without a truly horrible low first. Greg and I looked at each other and jumped into action. I grabbed her up, he whipped out the glucagon, and in less than 10 seconds she was back on her way.

We tested and tested. The glucagon pretty much stopped her descent right where she was and held her steady throughout the show. We were able to hold our kids and enjoy the experience with them just like a major event hadn’t almost happened. It worked beautifully.

It chills me to think what might have happened. Without the Dex, we wouldn’t have immediately known her rate of descent. Without the IOB feature on our pump, we wouldn’t have known what a whopping huge amount of insulin was acting in her body. Without the DOC, we wouldn’t have been ready to go with the mini-g. That night could very easily have ended with her in the emergency room instead of oohing and aahing a spectacular light show.  We count our blessings.

Since then, we really feel like a load has been lifted. The fear has been taken out of glucagon, and that is no small thing. If you are thinking of trying mini-glucagon, the recommendations are as follows (and use a regular insulin syringe):

• ages 2 years and under: 2 units
• age 2 to 15 years: 1 unit  for each year of age
• age 15 years and older: 15 units

Disclaimer: I am not a medical professional. Information I share here is not intended to replace the advice of your doctor or other medical professional.

I’ve been trying to get Ainsley pumped up for the pump. Har har. I’ve been showing her the very impressive brochure over and over, emphasizing that she can choose whatever cool color she wants (always pink, despite my push for green). I’ve reminded her over and over that when we get the pump, we won’t have to do shots anymore. Now that we’re getting so close, I was really talking it up today. Ellory sat next to  us on the couch, in the background.

Fast forward to a few hours later when Ellory walked up to me and said, “Mom, when Ainsley gets the pump will that mean she doesn’t have diabetes anymore?” “No, babe, she will still have diabetes.”  ”Oh. Well, will it mean that she’ll be like a normal girl and she can eat whenever she wants?” A few skipped beats. “Yeah, babe, it will mean that she can eat whenever she wants.”  She smiles happily. “Ok!”

Why did this  happen? What kicked it off? Why do some kids get diagnosed at 2 and others not until they are 10 or 15 or even (as is becoming more common), in adulthood? These are questions with no good answers.

The first thing many people ask me is who else in our family has Type 1. Answer: no one.  Most people believe that Type 1 is a purely hereditary disease. That is so not true that in fact most of the Type 1 families I have met also have no one else in their family with Type 1.

The reality is that Type 1 has a genetic component but it’s only partly responsible. It may even be only a smallish piece of the puzzle.  Viruses look like good candidates right now, as do environmental factors. The viruses and the environmental factors may very well be be interrelated. And require the presence of a certain genetic component. Type 1 is a complex disease.

This website does  a beautiful job of collecting the major hypotheses and theories out there, as well as associated studies and information. I was particularly interested in the studies relating latitude with incidence of type 1. For example, Finland has the highest incidence of Type 1 of any country in the world. It turns out that, in either direction, as you approach one of the Earth’s poles, the higher the incidence of type 1. Closer to the equator = less incidence. It can be seen dramatically in Australia; the North end of the continent (closer to the equator) has a lower incidence of type 1 than the South end (closer to the pole). Weird, huh?

This ties into the Vitamin D hypothesis. Studies show that higher levels of Vitamin D have somewhat of a protective effect against Type 1. This correlates with living in an area that sees more sunshine. Likewise, low levels of Vitamin D have been found in diabetics.  Similar studies have been done with Omega-3′s.

Needless to say, Ellory can now hardly see her plate for all the vitamins piled in front of it at mealtime.

Ellory is 4.5 years old and she is a cowardly lion. Meaning that she is a coward (when it comes to pain), and she is a lion about her cowardice.  The first time we ever had to take her for a blood draw, it took 4 adults to hold her down. The other day Greg tried to remove a nasty splinter from her foot. The effort took 2 hours, a tremendous amount of screaming, pleading, and bribery, and culminated in . . . a nasty splinter in her foot. That’s Ellory.

Most people tend to be fascinated by the things that scare them the most and so Ellory is deeply fixated on Ainsley’s diabetic torture devices. She wants to know all about how they work. She wants to examine them. She HAS to watch every finger stick and insulin shot. She insists on it, and yet then cannot help herself but to engage in a strange stationary dance of trepidation as we prepare the test or shot. The dance increases in speed as we approach and she starts saying things like, “Oh, here it comes . . . it’s going to hurt . . . here it comes . . . I hope it doesn’t hurt too bad” until at the last she is vibrating right off the floor and speaking in terrorized tongues. Poor Ainsley.

Needless to say, I sat down and had a talk with Ellory about being supportive and not scary. The dance continues, but now she shouts things in English like, “oh, um, oh, ah, ah . . . GREAT JOB AINSLEY!”