SsSSsSSsSsSSSSsssSssS

They are monsters. They broke my keyboard. In the morning, while I hide in the bedroom with the world's best baby (this is not an exaggeration), while Jim does breakfast and insulin and all of the morning craziness, the girls like to sit at my computer and "ride the rollercoaster." It's an effect on the photo booth feature of the Mac.  It felt like a good deal. They were supervised. They could do it together without fighting. Jim could get a moment of peace while he counted carbs, cooked eggs, made lunches, and drank coffee.

The roller coaster and our kitchen. 

Until, they broke my keyboard, the s key specifically. Monsters, (a word I couldn't type until today). I'm not even sure how they did it, how they managed to break only one key, but they did it. 

There is no more rollercoaster riding for them. A week and a half and a hundred bucks later, we are back online. SSSssSSSSssssssSSssSSSSSSSS. Gosh, that feels good. 

More to follow. Still not sure how today ends. 

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. 

The Beauty of Impossible

I had an important realization today. I was in my bed this morning nursing Q, just after Jim left for work. He was a little fussy after a rough night, Q not Jim, and seemed to be struggling with gas, again Q, not Jim. He kept latching and unlatching and scrunching and unscruching. He finally settled in just as O came in, completely stuck in her sweatshirt. She had one arm out and the body part pulled halfway over her head. She was knocking into everything and shrieking, "I'm stuck! I'm stuck! I'm going to be stuck forever." This is very much in keeping with her temperament and personality. As I was trying to verbally coach O back into or out of her sweatshirt, (at this point I was, honestly,  not entirely sure which one she was attempting to accomplish) my cellphone started making a WEEEE-OOOO, WEEEE-OOOOO alarm sound. This is the sound it makes when P's CGM is dropping low. Sometimes it is a false alarm, but it requires a finger prick to be sure, and possibly treatment if confirmed by the finger prick. P then came in the room and wanted to sit on my head. You see, my head was an egg and she was a mama bird and she really wanted to help me hatch my head. My head would be so much cuter as a baby bird than as just a regular old mama head. This is very difficult logic to reason with. In the background somewhere, Sam, my almost blind and mostly deaf 14-year-old lab was barking at some imagined mail carrier somewhere within a two block radius. So there I was, alone with the four of them. From each of their perspectives their needs were urgent and important. Q wanted to nurse and fall asleep while roundhouse punching my right boob. I forgot about that, but I'm pretty sure that is a thing all babies do. Babies are so weird. O wanted help to escape from the prison of her too small sweatshirt. P wanted to hatch my head into the glorious baby bird it was always meant to be. Sam wanted to terrify or lick to death an imaginary mail carrier.  I wanted to shut off the alarm on my phone and check P's blood sugar to make sure she wasn't plummeting into seizure/comaville. 

And then it hit me. My life is impossible right now, utterly and completely impossible. That's why I'm struggling. That's why I'm constantly missing things. That's why the house is a mess. That's why the dishes aren't done. That's why I feel like I just can't keep up, because I can't. It is impossible. There are three people who need me, all at the same time. One of them relies on me as his exclusive source of food and the another one needs me to function as one of her major organs, and triage only goes so far. At first I was devastated. I wanted to cry. I couldn't do it. I could't do my life. It was impossible. I texted Jim. 

I should add, I was also googling info about the shooter in DC today. I would have edited that out, but you know, impossible. 

I took a deep breath. There have been a lot of those lately, with varying levels of success. I unlatched Q and looked him deep in the eyes and told him I would be right back. I would love to tell you he smiled sagely at me and waited, content for my return, but he didn't. He screamed like someone was sticking hot pokers under his tiny fingernails the entire time, and then he did the sobbing hiccuppy thing that babies do to make you feel guilty for letting them cry. I forgot about that too. I dislodged the mama bird from her perch on my head and told her that she could hatch me later.  I wasn't quite cooked yet and babies need as much time as possible in their shells. Her displeasure was registered with song. The lyrics were primarily focused on how I was the meanest momma she ever knew. O, poor O, she had worked her way back into her sweatshirt and was hot and exhausted by the effort. She was still upset that she couldn't get it off and she wailed to me mournfully as I went in search of P's meter, "I guess I'll just DIE in this shirt. I'll just die in it." 

After recovering the meter, I came back into the bedroom to find P lovingly helping O take off the evil sweatshirt. I paused in the doorway for a second, hesitant to interrupt their alliance. I am not alone, and neither are they. We all belong to each other, and while that might mean that sometimes you get trapped in a sweatshirt, it also means that your sister will be there to help you escape.

I tested P's sugar. I finished nursing Q.  I gave O a hug and told her I was sorry she got tangled up in that sweatshirt and I bet it was scary and we problem-solved for next time. I patted Sam on the head and reassured him that the imaginary mail carrier was at least three blocks away by now. I let P hatch the baby. Remind me later when I complain about my neck.

The dishes didn't get done. I may have put Q down today in a pile of dirty laundry, because it looked soft. I bought some new bath towels last week and I'm pretty sure they have all been used without being laundered and with tags still attached.

Because, right now my life is impossible. But it is other things too. It is beautiful. It is magical. It is filled with love and compassion. I am failing at a lot of things right now, and that is very hard for me, but, when I look at it all at once, my heart swells. We are succeeding at the things that really matter. We are finding our way through the impossible. 

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. 

How Do You Say Kindergarten in French?

O is almost six years old. She has lost two teeth, bottom middle. Only one made its way to the tooth fairy. The other seemed to evaporate. We suspect the dog may have eaten it. She is more than halfway through French Immersion Kindergarden. All of the above statements feel utterly impossible to me. 

This is what all of my pictures of O look like lately

After all of the agony and tears and paperwork (thanks a million, LAUSD) that went into deciding where to send her for Kinder, she ended up at a small neighborhood school, out of our district but not too far, in the first year of their French immersion program. She does a half-day in French and a half-day in English. She claims to hate French, but I catch her counting in French when she is doing homework, singing in French softly to herself while she draws, and her face just beams whenever anyone mentions her French teacher. I, occasionally, indulge myself in day dreams of visiting her in Paris someday.  I speak a little French and at least feel equipped to help with kinder homework, but I'm pretty sure by the third grade, she will have lapped me linguistically. 

In the end, the thing that helped us decide where to send her wasn't the research on bilingual education or the school's rating. It was a piece of advice I received from a friend, who also happens to be a parent and an elementary school teacher. Pick the school based on who you want to be parenting alongside, she told me. After all of the advice, research, and data, that was the thing that seemed to make the most sense. Find a community.

So many of the answers to my big life questions have boiled down to that in the past few years.  Feeling artistically stifled by LA and all of it's LA-yness. Find a community of artists who uplift and support each other. Feeling lonely and out of synch as new parent of two little kids in a city that isn't particularly little-kid friendly. Find a preschool community of like-minded, invested parents who will offer support in ways you couldn't ever imagine. Feeling overwhelmed by a new life-changing diagnosis for your three-year-old. Find a community where, well, we are still working on that one. 

So that's what we did. Several of O's friends from preschool had chosen this program. The parents I met at the booster club meeting and the school tour seemed interested and involved. Honestly, the French is just an interesting side note. The school is small by LAUSD standards, under 300 kids, still, a bigger pond than the ones I'm usually comfortable swimming in, but we are getting our feet wet, one toe at a time. O seems really happy there and that goes a heck of a long way. 

Just for the record, je ne sais pas comment se termine aujourd'hui. 

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. 

New Normal, Part Two: The Hospital and Nick Jonas

P: So I have i-ah-beat-ees forever?

K: Yes, you will have it forever.

P: Momma, what forever mean?

And so, we were in the hospital. Two weeks after leaving the maternity ward with a new tiny human (more on that later), we were in peds with a slightly less tiny one. Jim and P checked in at about 9:30pm, and at about 10:45, P received the first of the countless insulin injections of her lifetime.  

I was home with O and Q that first night, and when I heard O start to stir in her bed the next morning, I crawled in with her and we snuggled while I told her where dad and P were and what was going to happen over the next few days. I told her I was scared and it was ok if she was scared too, but that everything was going to be ok. I hope I was more convincing than I felt. Luckily, my dad was able to come up and take care of O, (shout out to grandpa and Libby) so that she was able to keep as much as possible of her routine intact. He also helped take care of me, forcing me to eat something when I came home from the hospital that first night and gathering up all of our laundry and dropping it off for fluff and fold so that everyone would at least have clean underwear. (shout out for clean underwear) 

Considering that we were there to receive a life-changing diagnosis about a chronic condition for our preschooler, the hospital was pretty uneventful. The doctors were wonderful. The nurses were amazing. Everybody, diabetic educators, nutritionists, child-life specialists, who we encountered met us with compassion and respect. When my eyes would well up, some of them even cried with me. All of them told me that Nick Jonas has Type 1 Diabetes. No joke. All of them. Even the janitor. 

They also told us how early we caught P's diabetes. They told us that most kids come in dehydrated and in ketosis, and end up needing time in the ICU with an IV. P was basically fine. Her sugars were through the roof and she didn't feel great, but after that first shot of insulin, she was ready to come home. The next two days in the hospital were really for Jim and me. We had to undergo a crash course in pediatric diabetic care, learning how to measure and administer syringes of insulin, how to accurately count carbs, and monitor for signs of hypoglycemia, all while nursing a two week old in the corner of her hospital room and furiously googling things like pumps, A1C, sick day protocol and CGMs on our iPhones.

And then, home.

With 8 bottles of insulin. With 10 boxes of syringes. With our sweet, tiny P, who had to miss her first ballet recital because her stupid immune system decided to attack her dumb pancreas. (more on dumb pancreases later)

I'm constantly a confusing combination of grateful and angry. I am so grateful that we have the resources and the technology to take care of this, to be the pancreas P deserves, and in the exact same moment, I am so angry that she has to live like this, or some version of this, for the rest of her life, our new normal.

I'm trying to breathe through the anger. I'm trying to hold on to the grateful. Somedays are better than others. 

Still not sure how today ends.