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.

Dealing with death is harder than dealing with diabetes, and I often remind myself of that.  The worst days are when I feel swamped by both at the same time.  On such a day recently I was driving in the car and thought, things have never been harder, and I’ve never been stronger.  They are both equally true, and embracing that, I suddenly felt  . . . victorious.

Looking back, I realize that I have been balancing on the head of a pin, waiting for the pain to end, waiting to recover, to get back to the way things were.  But, of course, the way things were is dead and buried with Lindsey. We left it behind in the Pediatric Subspecialties conference room at Kaiser.  Lindsey’s never coming back, and diabetes is never leaving.

I have often said that the only way to love Ainsley is to embrace her diabetes. When people are afraid of it and reject it, they reject her. It is an inseparable part of her, and it does not make her less desirable, less able, or less fun. Diabetes is a hideous hogbeast, and it is just as much Ainsley as her chubby cheeks and spunky personality.

I want her to see herself as such, as a whole person, not her and then that horrible thing. I don’t want her to fragment herself that way.  I know that if she does, she’ll resent the pain and the burden and the singularity of it more and more and grow bitter.  She might try to hide it, or ignore its demands and not take care of herself.  I want her to be happy and secure in herself and ok despite this shitty card she’s been dealt.  Hello Kettle, they call me Pot.

How shall I be bitter about the cards I have been dealt, and ask Ainsley not to be?

I will never be ok with my sister’s death or with the fact that we are totally dependent on the availability of modern medicine to keep my daughter alive. But I think my moment of victory marked a turning point for me, and for us. It was the point when I realized that I wasn’t balancing on anything at all; I was just standing still.

My hideous hogbeasts aren’t ever going away. They are me, and we are we.  Whole and ok we will be. Hogbeasts and all.

Yesterday I got a tweet from my D-friend, Lorraine, who lives far, far away and yet instantly near through the auspices of Twitter.

“Where are you? Everything ok?”

Good question.  It made me realize that I haven’t been present on Twitter for quite some time now. I’ve missed the last two, or maybe even *gasp* three, DSMA conferences – a weekly event that has approached the level of sacred around here. I’ve stopped reading D-blogs. Stopped clicking on links. Just kind of . . . stopped.

I’m still taking care of Ainsley. I still work hard. But I think I’ve just been kind of tuning out of diabetes.

It came full circle when we had our tri-annual endocrinology visit this morning with a new-to-us member of the team, Dr. L. Dr. L is a little more hands-on than our usual endocrinologist who takes the attitude of whatever-you’re-doing-is-working-I’m-just-going-to-leave-you-to-it. Dr. L says he wants to earn his keep as an endocrinologist and so he really dug into the data and tried to help with improvements. He noticed our recent trend of high blood sugars.  I became defensive and said, “You know, every time I get things just right, she changes again and I’m always running to keep up. There’s been a lot of upheaval lately. I’m working really hard but I just can’t ever keep up.”

Dr. L  smiled a gently knowing smile. “You’ve been diagnosed for how long now? A year?”  A year next month, as a matter of fact.

“You’re in the grind of it now. In the beginning, it’s all learning and motivation and hard work. And from here on out, it’s trying to STAY motivated to work that hard. There will always be upheaval and the BGs will never be very predictable. You’ll always be running to keep up. Now the hard work comes in trying to stay motivated.”

You’d think that would be depressing and, in a way, it kind of was. But having someone say it to me just like that, just like it is and always will be . . . I felt as though I’d been holding my breath and suddenly let it out. And breathed in again. I guess I’ve got my second wind. Let’s do this.