No More Firsts

We've been at it for a little over a year now. The actual day came and went. There was a discussion about if we should celebrate, and if we did celebrate should it be on the anniversary of the day she was admitted to the hospital late at night or the following day, when we met with the pediatric endo and started learning about the journey our family was about to take. In the end, we all woke up on the anniversary of that second day and I told P that I was so proud of how brave she had been and how happy I was that we could celebrate a whole trip around the sun of being healthy and safe with diabetes. She just smiled at me and asked if it was show and share day at school, and if it was show and share, could she please bring her pet unicorn because she was pretty sure Sparkles the Unicorn wouldn't poop in the classroom this time, and the rest of the day passed, like the days usually do, without much fanfare. 

First Sand Panda

It was a couple of weeks later when it hit me. We are done with the firsts. We celebrated our first Christmas, her first birthday, the first Valentine's Day, with Type 1 (can we just chill with the candy, people). We weathered her first drop off at school, and the first time she wished she didn't have it anymore, not even upset, but while blowing out the candle on her birthday cupcake. We survived our first hospital stay, our first stomach bug followed by our first frightening ER visit, the first time she went low and I wasn't there to hold her while she pounded a juice box. Even the more mundane firsts are behind us now: the first shot in public, the first restaurant meal, the first playdate, the first time we gave the wrong insulin dose. A whole year of milestones, needles, and learning, are behind us. 

First first year endo visit. 6.3 A1c. (If you know what that means, yes, I am bragging)

It turned out to be true, what everyone who had a reason to know kept telling me in those early fractured and terrifying days. It won't get any easier, but you will get better at it. I'm better at guessing. I'm better at forgiving myself when I screw up. I'm better at balancing the demands of this disease with needs of P and O and Q. I still get sad and scared, but less often, and I know the things that can help to pull me out of it. I still worry, but I have more trust that the family of people that we have chosen to surround us will be there to hold her hand when I am not, to lift us up when we can't stand, and to shine a light when things get dark. 

First birthday for this sweet face

She is only four, and I know there will be a few more Type 1 firsts that will creep up on me. I'm already scheming how we are going to put the pump on whatever she decides to wear to prom (please, let it have pockets), but for now, I'm happy to be on this side of things. We survived the first year of firsts.

151

It’s 151,” he said, his voice tense and perplexed. “What does that mean?”

I could barely hear him. I felt like I was falling down a black hole. My vision was clouding in at the edges. I couldn’t take a full breath. The bedroom was dimly lit and quiet. A large bed occupied most of the real estate, but there was a small white crib by the window and a large overstuffed white glider in the corner of the room. It would have seemed so peaceful, a mother and baby rocking quietly in the corner of a hushed room, but the reality was much harsher, a bit like the color on the walls, a yellowish beige that was a poor choice for a small room with so little natural light. A color that, finally, on the Fourth of July weekend, I painted over in a fit of insanity, stepping over piles of laundry and screaming children with old gelato containers filled with cool white paint, painting one corner, one wall, one coat at a time, while Jim looked on, smiling bemusedly, knowing to say nothing, not even to offer to help. There is no stopping me once I fixate on something. He knew that going in. 

That night, though, the walls were still that yellowish beige. I felt on the verge of tears, or vomit, or probably both, the weight of my sweet babe at my breast the only thing keeping me tethered to the earth. 

One hundred and fifty one. I had already convinced myself that she had it. She had used the bathroom six times that afternoon. She was hungry constantly. I was envisioning the drive to the hospital, the terror on her face when it was time for the first of a lifetime of shots. It was over. My life, as I knew it, was over. 

It was late. The girls were in bed. Jim and I had been talking in hushed whispers about our concerns, until we couldn’t bear it any longer. He crept into their room and pricked her finger while she slept without waking her, a skill we had become very adept at over the past 3 months, but instead of the bottom bunk where our sweet P slept, he reached into the top, to test O, our five year old. I was sitting in the glider, nursing a three month old Q and wondering how I could leave. Leave all of it, all of them. 

Being P’s pancreas had been hard and will continue to be, but with O, my willful, challenging, brilliant, sensitive six year old, it would be impossible. We already struggled to understand each other, and starting tomorrow, I imagined the six shots a day, not to mention the obsessive carb counting and blood checks, and at least a decade of being in constant struggle over what she put in her body and when, followed by a lifetime of worry and loss of control. I couldn’t do it. It was more than I could bear. 

“Kate,” he called to me. “Kate, what does that mean?”

“Nothing. It means nothing. It’s high, but not high enough to diagnose. We’ll check her fasting level in the morning. Set an alarm, so we can do it before she wakes up.” I paused. “Jim,” I said finally, “I want to run away.”

“I know,” he said softly. 

He came over and gently kissed my forehead before he headed out to walk the dog. “I’ll be right back,” he whispered. 

The Amex had the highest limit. There were no carseats in the black station wagon. I could finish nursing the baby to sleep, and leave the powdered formula they gave us at the hospital on the kitchen counter. He had never taken a bottle before, but he would get hungry and figure it out. I could drive. I could go north. I could go south. I could follow the coast until I felt like stopping. Jim is the better parent anyway, more patient, more empathetic, more nurturing.  I’m not really cut out for this. I'm hard and demanding. I sometimes miss the subtleties that accompany normal human emotion. I could just drive into the night, roll down the windows and crank the radio, drive until I felt like coming back, if I felt like coming back. Just walk into the night, find my flip flops by the back door, and never look back, at least, until looking back felt safe again. 

An insistent buzzing from my phone snapped me out of my anxiety-induced musings. P was going low. I replied quickly to a concerned text from Jim, “I’m on it.” 

I checked her monitor, 67 and going down. Shit. Shit. Shit. 

I eased the baby off my breast and down into the crib. He had been asleep for a while. My holding him was more for my comfort than his. 

My eyes burn in the harsh light of the kitchen, as I measure an exact half cup of milk and pour it into a cup with a straw. Back in the dark of the girls’ room, I feel my way to the lower bunk. I prop her up on my arm, her body floppy and her breath sweet. I put the straw to her lips and she drinks, almost still completely asleep, a random cup of milk in the night is her new normal. It requires no explanation.  It is certainly better than the random needle in the middle of the night that awakens her all too often. She finishes, smiles softly and cuddles into the crook of my arm and settles back into a deep sleep. O rustles in her bed above us, mumbling something about the Mariana Trench.

P begins to snore softly. I breathe her in. This is my life and I am home. 

The Third Time

Today, I held my baby in a hospital bed for the third time.

The first, she was so small and new and the room was filled with joy. 

The second, we were introduced to our new normal, a life we never planned for or expected, a casual, sanitized, oversimplified introduction, like high-fiving the person you are about to marry.  I wanted to put her back inside of my body, repair the parts that needed to be fixed and birth her again into that room filled with joy. Somehow, we knew this wasn't all of it. The room was filled with fear. 

The third, today, we knew was inevitable. It was the third in what will be a lifetime of hospital beds I will hold her in. I will hold her as long and as tight as she will let me. Today, this perfect creature, that I put into this imperfect world, with a body that has betrayed her, laid her head on my breast, closed her eyes and told me she wanted to go home. I couldn't take her home so I just held her and made my arms a home. It wasn't enough, but it was a beginning. The room was filled with love. 

I know more now than I did the first time or the second time, more about joy, more about fear, more about love, certainly more about pancreases. My priorities have shifted and shattered a thousand times since that first hospital bed. I now know that there is joy to find even in unexpected places, if you take the time to look. I know that fear is generally a place holder that knowledge and experience can start to fill. Now, I know that love can make your arms a home, even when home seems far away. 

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. 

Q

You guys, Q is awesome. There is some third-baby-magic stuff happening over here. He eats when he is hungry. He sleeps when he is tired. He laughs so hard he gives himself the hiccups, and then his hiccups make him laugh, which makes me laugh and pretty soon the two of us are laughing so hard that we look like crazy people. His pancreas works, for now (more on that later). He is always happy to see me. His needs are concrete and his problems are solvable. I swear, he understands me in a way I have never been understood before. He is my buddy, my buddy who just wants to nap and cuddle. It is so much good, an island of good in a rough sea of big, hard things, a respite that I so desperately need. 

His birth was fast and furious and before T1D, I would have had a lot to say about it. I might have more to say later, but in the weeks that followed, the play-by-play of November 19th has grown fuzzy and inconsequential. I do remember that one minute I was waddling down the hallway being admitted and the next minute (no, but really, like the next minute), he was here, ushered into this world by an indomitable midwife named Felicia, who at the moment of truth, locked eyes with me, told me to close my mouth and bear down. He weighed over 9lbs and other than some initial issues with low blood sugar (more on that later) was the picture of health. In the past three and half months he has grown and bloomed into the most reasonable human I have ever had the pleasure to meet. I am so glad that he is here. 

T1D: The Beginners' Guide, or a Letter to P's Co-op Preschool

My dear fellow Ranchonians,

As you all are already aware, P has been diagnosed with Type 1 Diabetes, an auto-immune disorder where her immune system has attacked the cells in her body that produce insulin, rendering her pancreas no more useful than a decorative hood ornament. Here is an excellent and brief overview about T1D if you are curious: http://beyondtype1.org/what-is-t1d/ (hint: she didn’t eat too much sugar)

(This next paragraph may be too much information. Feel free to skip it and go straight to the list below.)

Basically, the insulin that your pancreas produces is the way the glucose (energy) from your food gets out of your blood stream and to your organs for them to use to grow and function. Without the insulin, the glucose/sugar/energy gets stuck in the blood. This means that the body and brain are essentially starving, while the kidneys struggle to deal with the sugar spilling out into the urine, which causes excess urination and leads to dehydration.  Without insulin, blood sugars continue to rise and the body would continue to dehydrate and starve over the long term. On the flip side, too much insulin or unplanned for activity (activity can also lower blood sugar), can drop blood sugar levels to dangerous levels which can lead to seizures and comas (fun stuff, right?). While high blood sugar is dangerous over a long period of time, low blood sugar is acutely dangerous, or dangerous in the moment.

Luckily, through the miracles of modern medicine, I now get to function as her pancreas, providing her with the insulin that she needs in the form of a subcutaneous (or just under the skin) injections 4 times a day. I, unfortunately, sometimes do a pretty crappy job at being a pancreas, so there are some things to look out for when P is at Rancho.

1. Make sure she eats all of her snack. I will portion it out every day when I sign her in. It will be on Cindy’s desk. I will do my best to ensure it is something that she likes, that she will willingly finish, but it is important that she eats all of it before she goes to circle time. Not eating all of it could result in a low blood sugar which could be potentially very dangerous. 
2. Be mindful about sharing food both during and after school. P CAN eat anything. I just, as her ever vigilant pancreas, need to know about it. If she eats something extra, it is no big deal, especially if I know about it. This would result in a higher than normal blood sugar, which is much safer than a low one.
3. Watch for strange behavioral cues. We have noticed that when her sugars are really high, P becomes extremely agitated and upset, lots of screaming and crying. Unfortunately, the only thing that we can do at that point is wait it out. If she is really upset and can’t seem to recover, Cindy will call me and I’ll come and assess if she is having a health care moment or just a regular old three year old moment. When her sugars are low, however, she may be more tired than usual, pale, shaky, unsteady on her feet, or perhaps not able to speak clearly. If you observe P acting strangely and have any concerns, please alert Cindy. She will be the one to make the call to me and to decide if administering the emergency apple juice (located in the fridge in the classroom) is necessary. There is also an EMERGENCY medication called glycogen, which will be kept in the boiler room with the first aid supplies. This is only to be administered by Cindy and only if P is completely unconscious. 
4. Keep your kids home when sick. I know we are all already doing our best on this one, but I just wanted to throw this out there. If P contracts Norovirus, or any other bug that results in vomiting or diarrhea, she will have to be hospitalized and put on an IV. The rule of thumb is to wait a full 24 hours from the last upchuck or under-chuck before returning to school. Do me a solid (pun intended) and help me keep my kid out of the hospital. 
5. Feel free to ask questions. Ask me. Ask P. Ask Jim. Ask Cindy. Encourage your kids to ask questions. Encourage your kids to ask P. She’ll be dealing with this for the rest of her life, so she needs the practice talking about it now. Within the year, she will most likely be wearing a CGM (a device that sits on her arm or belly and constantly monitors her blood sugar, sending me the data wirelessly) and an insulin pump (a separate device that she will wear that will continuously administer insulin via commands from a wirelessly enabled handheld device). If the kids don’t notice the extra snacks and the syringes and the finger pokes, they will certainly notice those devices. They will be curious. Curiosity is beautiful, especially at this age. I believe that the best way through this for P is by educating and advocating, so ask. I will almost certainly give you a longer and more thorough answer than you wanted (kind of like this email), so I apologize in advance. 

You are all beautiful, special people and I am supremely grateful to be parenting along side you. I know this is a lot. Thank you for helping me shoulder the load. 

K

New Normal, Part Three: The Needles aren't the Hard Part

I know what you are thinking, reading these posts. "I don't know how I would do it," or some version of that. I don't know how I could use my three year old as a pin cushion anywhere from six to twelve times a day. I don't know how I would handle the blood and the syringes. I just couldn't do it. 

The reality is you get over that part pretty quickly. I used to be terrified of needles. My step-mother likes to tell a very embarrassing, but no doubt amusing, story about a twelve year old Kate who ran out of the exam room to avoid a routine vaccine. I would warn the phlebotomists that had the misfortune of dealing with me that I was going to sob the whole time, but they should just ignore me and get it done. My first pregnancy took care of that, and any last remnants of needle phobia were banished when P looked up at me at me at the hospital and said, "I want momma to do it," and the nurse handed me the syringe. Honestly, even P is almost over the pokes. She offers up her hand for testing, and picks the leg and wipes the injection site for the insulin, and we are only three weeks past dx. I sneak into her room every night at 9:00pm and inject her Lantus, the slow-acting insulin that mimics the low level of insulin that the pancreas is supposed to be constantly producing (stupid pancreas), right into her belly, without her even waking up. The needles are no big thing. 

The hard part is the constant high-stakes judgement calls. It seems like it should be easy, food in, insulin to match. Here I am, an adult woman functioning as my daughter's pancreas. I should be able to do this. Easy peasy. Except, it isn't. There is a lot of art in the science of diabetes management. Should we give a unit or a unit and half? Should we offer her another tangerine? Did she eat half of that sandwich or two thirds? If she was high at lunch but low before dinner was it because of activity levels or did we weigh something wrong? Should we test her at 3am again or try to let her sleep? 

The hard part is separating out parenting moments from healthcare moments. Normally, in our house, when one of our kids is in the middle of having a big feeling, struggling with the realities of things like the word no, or having to wait, we sit with them and help them through it. We do our best to validate and make space for the feeling and the response while simultaneously reinforcing reasonable limits and, once the big feelings are out of our bodies, trying to use it as a teachable moment, (insert your judgements about my spacey, new-age parenting style here, and then shove it) but in this brave new post dx world, I have to view every uncharacteristic behavior as a potential healthcare moment. You can't effectively parent a kid who has a blood sugar over 300, and a blood sugar under 60 can be potentially life threatening and requires immediate treatment. Short of pricking her finger and testing her, my only indication of how high or low her blood sugar is, is her behavior. I am now in the position, until we grow more confident, of having to threaten my child with a lancet if she can't calm down independently. We misjudged a snack before going to the park a few days ago, and when it was time to leave P had a really hard time (normal), but she grew hysterical (less normal), and eventually was sobbing and screaming and kicking as I forced her into the stroller (way outside of normal). We tested and found that she was at 325 (normal blood sugars should be between 70 and 180 immediately following a meal). There was no reinforcing a reasonable limit. There was no teachable moment. It was a healthcare moment, not a parenting one. I felt the eyes of all of the other parents at the park as I strong armed her into the stroller that she was too big for, while she screamed all the way home. 

The hard part is worrying, constantly, about what her life will look like longterm. There are so many unknowns out there, so many big scary unknowns, even without T1D. When you add a chronic condition, with all of its complications, that requires constant and consistent treatment, the unknowns start to feel suffocating.  It was 1:30am. Everyone was asleep except for me and Q. I had stumbled to the rocking chair with him to nurse. He snuggled in, made a sound that sounded a lot like a mischievous giggle, latched and began to nurse. I was flooded with a sense of well-being, a sense that no matter what other chaos my world held right now, this moment, alone feeding this sweet baby, was perfect. In almost the same breath, I was seized with panic: calories in, calories out, glucose, sugar, insulin. I stood up from my glider, securing Q to my breast with one arm and lunged for my phone. I frantically typed into my search bar, "can t1 diabetics breast feed." They can. My eyes filled with tears. I sunk back into my chair. I felt relief wash over me, for the moment. 

They can breast feed. They can, with a lot of support, get pregnant and have healthy pregnancies. They can travel the world.  They can fail algebra. They can learn french. They can eat ice cream. They can be athletes, doctors, and artists. They can make mistakes and make brave choices and have adventures.

They can even be pop stars. Just like Nick Jonas.