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. 

New Normal, Part One: We Knew

We knew. On some level, we knew months ago that something was wrong. Jim and I had even talked specifically about it, one night on the couch, after she had wet her bed, again.  I believe my exact words were, "Shit, man. That would suck," but it couldn't be that. 

I was 37 weeks pregnant, and she couldn't have it. I was being a hypersensitive mom. I wasn't sure what the exact odds were, but they were small, so it wasn't that. It was no big deal. She was drinking more water, but so what. We all were. It was hot, the hottest October and November on record. She was wetting the bed, but she's three. Three year olds wet the bed occasionally, even ones who have been out of diapers for over a year. She had lost a little bit of weight, maybe. I couldn't be sure. I don't regularly weigh my three year old. She was melting down at the smallest thing, dissolving into hysterics, but again, she's three, with a new sibling on the way. I could explain it all away, but I knew. 

Two days before dx. 

The day we came home from the hospital with Q (more on that here) I called and made a doctor's appointment, nothing urgent, just a standard check-up. She was months overdue for her 3 year old visit any way. I would ask the pediatrician to do a urine analysis. P would pee in a cup. We'd all have a good laugh about that. Our kindly pediatrician would smile at my overabundance of caution. I would be wrong and I would feel better. I was so ready to be wrong. 

We ended up having Q's two week visit and P's check up on the same day. I took Q in the morning and Jim was going to run P back in the afternoon, while I did after school pick up for O. It would be fine that I wasn't there, because nothing was wrong. Repeat after me: nothing is wrong, nothing is wrong, nothing is wrong. She was a happy, active three year old, who was adjusting to a new baby in the house. Jim called from the appointment and told me the pediatrician had told him the urine analysis looked odd, but they often get strange results from the in-office test. He would send it to the lab and call us later with the results. She looked fine to him. He sent Jim home with a packet of info on bedwetting and another one on how to help kids adjust to a new baby. I didn't feel better. 

That evening, after everyone was fast asleep, we sat on the couch waiting. I couldn't tell you what we were waiting for, but we both felt heavy and expectant. Jim decided to try to log on to P's online medical record to see if the lab results were in.  When we saw that her ketones were over 80, we knew. We knew we'd be going to the hospital soon. We knew we were in for a lifetime of blood tests, needles, and endocrinologists. We knew this was T1D. We knew because, over the past month, we had both been separately researching and reading about what happens after a T1D diagnosis, because somewhere inside of us, we both already knew. I looked up at Jim and said, "I can't go. They are going to need to keep her for a few days, and I can't go." He just held me, the same way I knew he would hold her. 

Within twenty minutes of Jim finding the lab results online, P's pediatrician called. Within the hour, Jim and P were on the way to the hospital. They had a room ready for her and the charge nurse knew we were coming, no emergency room, no wait. (Shout out to Kaiser) Watching Jim pull out of the driveway to take one of my babies to the hospital was one of the worst moments of my life, but I was only two weeks postpartum and Q wasn't allowed at the hospital over night. After they left, I ugly cried and cleaned. 

In the following weeks there has been a fair amount of ugly crying, it sneaks up on me sometimes, and significantly less cleaning. We are on a pretty steep learning curve, but we are figuring it out, one poke, one reading, one syringe of insulin at at time. Jim and I are a great team, and I feel supremely lucky that we are doing this together. Somehow, in the middle of all of this, Q is a month old, Christmas happened, and we've laughed together more than we've cried. The rules about who sleeps in what bed are just about out the window, but who needs rules about silly things like that. Right about now, I need all the snuggling I can get. 

Two weeks after dx.

Still, not sure how today ends, but sure that we all end up together. 

Pregnancy Brain

K: You know, the thing, the thing you use to get the tangles out of your hair. The hair thing. It's under the bed, I think. Or in the bathroom. The thing.

O: Huh?

I completely forgot. I completely forgot about pregnancy brain. I mean, I totally understand why I forgot, because I am currently forgetting everything, so it makes sense that I would have next to zero recall about my previous pregnancies. I've become the guy, the one from that movie, where he has to tattoo, or write everything, because he can't remember the thing about the girl. That one. Except instead of tattoos I'm relying on a combination of notes on my phone and post its. 

I know it all mostly comes back, but, man, I'm only half way there. And I'm responsible for the health and well being of these other two tiny people. Good luck, tiny people. 

So, I'm going to try to start writing again, but I can't make any promises, short sentence, small words. Now, how do I post this again?

Tiny Feet

O went up three shoe sizes in less than one year. Last year's shiny purple Saltwaters were size 8 and this year's red ones are size 11. Nothing puts the progress of time in a clearer perspective than those tiny feet: the ones that jabbed at me from the inside, the ones I held in my palm while she nursed, the ones I pretended to gobble after bath time, the ones I used to put tiny shoes on. She can manage those size 11s all on her own these days.

It's too fast and it's too soon, and yet it is right on time. Early this morning I was woken up by a smaller pair of feet. P found her way to our bed, wedged herself upside down between us, and was trying to pick my nose with her tiny toes. Tonight, as I type, an even smaller pair of feet are distracting me. Our son, due in November, has the tiniest feet of them all. For now. 

Motherhood: the Sisterhood

I've had a whirlwind month. Sitting in the quiet this evening and reflecting on the past few months, it struck me.  I currently have the deepest and most meaningful friendships with women that I have ever had in my life.

 Being a mother has made me a part of a sisterhood that runs deeper than I could have ever imagined. They come from different backgrounds. We have found each other through different avenues. We have different aged kids. We are parenting alone or in partnerships. We are parenting our biological children, our adopted children, our step children, the children that life has brought us, but we are all mothers. There is a rhythm to the conversations I have with my sisters, an easy back and forth. Sometimes we are solving problems, sharing answers. Sometimes we are just hearing each other, hearing the joy or the pain or the rage, just loving each other and saying, with our love, you are enough. Your presences, and your flaws and your mistakes, and your love are enough. Advice about carseats, bags of hand-me-down maternity clothes, a shoulder to cry on,  a name to put on the emergency contact line of school paperwork, a cup of coffee at the park on the day you needed it most, these women shape my day-to-day life in a way I never expected.

Thank you is insufficient, but for now it will have to do.