The Things People Say

It's funny. I hear the same things from other parents over and over again, after this diagnosis. Please, if you have been the asker of these questions, don't feel bad. I know exactly where the question came from and I harbor no ill will.

-How did you know?

Translation: How would I know?  Click here for that answer. Awareness saves lives. 

-Did you have a history of diabetes in your family?

Translation: Please say yes, so I can go back to believing this lightening won't strike my family.

-But you can control it with diet and exercise, right?

Translation: This isn't a big deal, right? I'm really uncomfortable and would like this to not be a big deal, so we can stop talking about it now.

-You are such a good mom. She is lucky to have you.

I am a mediocre mom on my best day, but the research assures me that that is most likely good enough. I am getting by day to day with what has been put in front of me just like every other parent out there. The fact that I have some big ugly medical shit on my plate doesn't make me a good mom. It does make me more tired than you, but that is the only race I am winning. If I know anything, I know I am lucky to have her.

And the inevitable, 

-I could never give my kid a shot like that.

Yes, you could. You all could. I promise you, you could and you would, without missing a beat. In the face of death, needles are no big thing.

Less common, but still more frequent than I would like are:

-Oh, I have a second cousin/friend of a friend/third uncle twice removed who died/went blind/lost a limb from that.

This is a tough one, especially in front of the kids, especially in front of O, who hears and absorbs everything. 

-My cat had diabetes and my insurance wouldn't even cover her insulin.

This is a real true thing someone complained to me about, recently. I had a very hard time controlling my face.

and

-At least it isn't something really bad, like cancer.

No. Fucking. Comment.

I try to answer the questions as honestly and as openly as I can, putting aside my own reaction to them and trying to provide information while recognizing where the other person is coming from. I'm am striving to be genuine in my life, to ask for help when I need it, to say out loud when things are hard, and a lot is hard right now.

I get it. It is weird and hard and awkward to just let these big scary words like DKA, coma, seizures, amputations, blindness, and hospital just hang out there, heavy in the air. It is hard to know what to say. I guess, I'd just like to give everyone permission to be quiet, to hear the hard things and not feel the need to fill the silence. If you must speak, I am quite fond of the poetry in the phrase, "Shit man, that fucking sucks."

The Thing in Front of Me

I have to stay focused on the thing in front of me, because everything else is too scary. When she is high, I have this gnawing ache of indecision, to treat or not to treat, ride it out and risk the long term complications, the result of the sugar ravaging her kidneys and other organs, or treat and risk the crash the smallest unit of insulin can cause in a body so tiny. When she goes low, a friend, another mom of another small person with T1D, described it best. Imagine your kid running out into the street. Imagine that. That's how it feels and that's how it is when she drops. Now imagine that over and over again. Now imagine that 45 minutes after you drop her off at preschool. Now imagine that 15 seconds after she jumps in the pool for a swim lesson. Now imagine that in the middle of the night. Now imagine that right now.

When she's stable for a few hours, or even a few days, it isn't any better. Then it is the crippling anxiety of what am I going to do to fuck this up? Will it be the extra bite of carrot, or the badly timed injection? Or maybe her swim lesson eighteen hours earlier will cause a low, or a growth spurt will cause a high, or the wind will shift and her pancreas will decide to work for an afternoon or an day  or maybe even two? (Did you know that when a child hits REM sleep their body will flood with growth hormone? Did you know that growth hormone will make the body more insulin resistant? Now you do.) 

So I just do the thing in front of me. I assemble the food. I give the shot. I drive to school. I count the carbs. I treat the high. I kiss the boo boo. I treat the low. I fold the clothes. I give the shot. I change the diaper. I treat the high. I broker the peace treaty. I test the blood. I do the art project. I change the site. I read the book. I treat the low. I treat the high. I treat the low. I treat the high. I lie in bed. I don't sleep, not really. Somewhere in there, I remember when there were big plans, big dreams, things that didn't involve tiny shoes, diapers, or blood glucose numbers, especially blood glucose numbers, but then, an alarm goes off and I'm back to the thing in front of me. Treat the low. Treat the high. Change the diaper. Assemble the food. Count the carbs. Take a deep breath.

Remember that this is a moment in time, that someday soon it will feel safe to look farther out than the thing in front of me, but for now, soothe the baby. Hold the little one, whose body has betrayed her. Kiss the child.  Breathe them in.  Treat the low.  

Love Makes Us Brave

O: That butterfly is just like me. She was brave, for a moment.

We were walking, just the two of us. It was quiet and calm. She even held my hand. Jim had run ahead with Q, strapped to his chest in a wrap, and P, riding on his hip. They were rushing off the beach to check P's sugar and get her a snack. O and I stayed behind to re-spool the kite string and gather up the sand toys. Along the path, on the way back to the beach house, I spotted a butterfly, not a monarch like we typically see, but a shiny black one with shimmering blue tear drops on it's wings. She landed on a shrub. Without thinking, I reached out slowly, placing my finger on the leaf in front of her. She didn't fly away, like I expected. Instead, she placed her front legs on my finger. I held my breath. As she moved her nonexistent weight off of the leaf and onto my finger, something in the air shifted and she fluttered away. That's when O said it. It broke my heart a little, even if at the time, I could not explain why. Brave, for a moment.

I've always wondered if O knows how much I love her, ever since she was a tiny baby. I would hold her for hours, singing and whispering and bouncing, but she would finally calm when I put her down. I would scoop her up and swing her into my arms as a toddler, and my fast movements would scare her, rather than delight her. She's always been cautious, slow to warm, risk averse. I tell her, daily, hourly, how I see her, and how what I see amazes me, but, our signals have always seemed crossed. The way I show love doesn't seem to match the way she receives love. This mismatch will be one of the great works of my life, learning to show her love in a way that she perceives as love, learning and relearning her love language. It is tough, loving someone like that, but it must be even tougher to be loved like that, never quite sure how to respond.  I know she feels uncertain a lot of the time. 

There are glimpses, moments when we connect, share a laugh, a look. She will, occasionally, sit so close to me that we almost touch. I can feel the warmth of her body next to me. I hold my breath. Then, like the butterfly, she's off again. Brave, for a moment, but loved, oh my sweet girl, loved for a lifetime. No matter what. I will never stop trying. 

P: Momma, my legs is tired of pokes. How about my belly?

K: Where ever you want, my love. How'd you get to be so brave?

P: Because you love me. I'm brave cause you love me with your whole heart and all your blood and even your bones. Dat makes me brave.

We were in my bedroom. I had prepped the half unit of insulin in the kitchen and was coming to administer one of her 4-6 daily shots. My question was rhetorical, just chatter. She put her hands on my cheeks, and pulled my face close, her breath warm and sweet. Her answer hit me in the gut like a sucker punch. Because you love me. At three, she said this frankly, matter-of-fact, and she's right. I do love her with my whole heart and all my blood and even my bones, and she knows. Her certainty that she is loved is why she can face the pokes and the needles and the blood in a way that breaks my heart into thousands of little pieces and then glues them back together again with pride. Love makes her brave. 

 Later on that day, I was driving down Pico, heading home from swim lessons. The day had rendered all three of them exhausted and quiet. O was staring out the window, lost in thought. P was singing softly to herself, something about corn horns (unicorns, but don't you dare tell her that is what they are really called). Q was snoring, just like his dad. As we inched our way home, my thoughts wandered back to the morning's conversation. My love makes her brave. That's when I realized that loving them, that's what makes me brave. It caught up with me in that moment, all of it, the stress, the worry, the sleepless nights, the needles, the scary lows, the hoping, the balancing, the pain of not being able to fix it, the fear of making the wrong call, the hurt that I have to inflict day after day. Tears streamed down my face. I am brave enough to face all of it and more, every day, because I love them. I love them with my whole heart, and my blood, and even my bones every minute of every day. Love makes us brave. 

All the Things I Thought I Knew

There used to be constants. There were touchstones in my life. There were things I knew. There used to be things I knew. Some were concrete and some have always been more ephemeral. I thought I knew how to make dinner. I don't anymore. I thought I knew what it meant to be a good parent. I now, don't even have any clue how I would begin to make that judgment about myself, much less about anyone else. I thought everyone should sleep in their own bed. I don't anymore (think that, or, quite frankly, do it). I thought my kids would be the lucky ones. That is the lie we tell ourselves so that we, the parents, can go on living. My kids will be fine. They won't get hurt. They won't get sick.

Momma, you a pirate and I a shoulder bird.

Until, they do. 

Tonight, almost four months post dx, we had our first major "dinner is yucky and I can't eat it or I might die" moment. I'm honestly surprised it took this long. Pre-T1D, I would have taken a deep breath and launched into, "I'm sorry you are disappointed with your choices for dinner tonight, but if you are hungry I would suggest that you take some bites and see if there is anything on the plate that you might want to eat. I will not force you to eat anything, but there will be no other food available until breakfast tomorrow." This was a thing I thought I knew. She could eat the dinner that was served, or she could go to bed a little hungry.

But tonight, my brain was racing and my heart was pounding. I knew her finger prick reading was in the low range and the continuous glucose monitor (more on that later) was trending down, and she had already had several lows today. You see, P is honeymooning. That is the term that the endocrinologists use to describe what happens to the newly-diagnosed when their pancreases, or more specifically, their few remaining islet cells kick back on for a bit, once the synthetic insulin is introduced and the stress on the system decreases. It doesn't mean that she is going to get better. It just means that we have to stay really flexible with our treatment protocol, because we never know when or why tiny P's tiny pancreas is going to try to "help" and kick out a bunch of extra insulin and possibly send her plummeting to seizure/commaville. Long story, short: she needed to eat something, preferably a slow carb, preferably soon. I thought about yogurt, an easy sell. I thought about peanut butter, a sure favorite. I considered the juice boxes tucked away in the wine cabinet. (Yes, we have a cabinet FULL of wine. Don't judge.) 

And then, I took a deep breath and said, "I'm sorry you are disappointed with your choices for dinner tonight, but if you are hungry I would suggest that you take some bites and see if there is anything on the plate that you might want to eat. I will not force you to eat anything, but there will be no other food available until breakfast tomorrow."  I did this while doing another finger prick to confirm her sugars were not dangerously low and while putting a half ounce of peanuts on her plate, but I said it. I like to think that I said it calmly and with the strength and surety that P needed to understand that this was a limit, that she was safe because mom and dad had it under control.

She wailed and sobbed and I held her and repeated, "I hear that you are not happy with what we made for dinner tonight. We can try again tomorrow, but tonight, this is dinner and if you are hungry, I suggest you try some bites," all while anxiously checking her number on the CGM. It felt important, this pre-T1D parenting approach, in a post T1D world. I was running contingencies in head the entire time and was just about to call it quits and settle on a yogurt after bedtime stories, hoping it would be a long enough window that she didn't associate it with dinner, when she said, "Maybe avocado isn't yucky anymore."

I let her sit on my lap, while I fed her dinner, something I would never have done before, and she ate. She ate the whole plate, while we laughed and chatted. 130 even, cruising into bedtime (This is real good, kind of like our blood-sugar-night-time sweet spot). So, maybe I still know some things, and maybe, some of the things I'm learning are even more important.