The Lost Year

 

I can remember the timeline leading up to it with startling clarity, even if the emotional memory is a big fat blank. I can replay those few weeks between Henry’s birth and Penny’s diagnosis like I’m watching a movie, a movie about someone else, some other birth, some other family. I’m sure it’s some kind of self protection that I can’t remember how any of it feels, even the good parts. 

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I was in labour for weeks, contractions all the time, walking around 3, 4, 5cm dilated, anxious about when it would actually be time. Penny was having a tough time at night, night terrors and wetting the bed, again and again. When we finally went to the hospital, Henry was born within minutes of us leaving triage. My water broke, and a few pushes later, he was there, nine pounds and change. A few days in the hospital, some trouble with baby's low blood sugar somewhat ironically, and we were home. I vaguely remember being very distraught about having to give him formula via a supplemental system, and looking back with everything I know now, I feel pretty ridiculous about how I reacted. 

Home, with Jim on paternity leave for six weeks, was supposed to be glorious. I remember thinking about how much we would get done and how much family time we would spend together. The first afternoon we were all home together Jim and I actually talked about Penny and the far off possibility of Type 1, a vague concept to us at that point. I even got a meter I had from when I had gestational diabetes and tried to test her primarily because I was sure it would make me feel better, but she got really upset and I just gave up. I called her pediatrician instead and scheduled her 3 year well-child visit, which was several months over due.  We ended up with a two week visit for Henry in the morning and a three year visit for Penny in the afternoon of the same day. For the next two weeks we just plugged along, taking Olivia to school, up at night with a newborn, just a blurry haze of diapers, breastfeeding, packing lunches, ordering take out, tired and grateful to have the time to be together. Henry was a joy, easy and affable, even at a few days old. We had an appointment with Olivia’s psychologist and Henry, content in the stroller bassinet in the corner of the office, laughed after the adults in the room did, at only a few days old. The doctor, an expert in infant and child development remarked on how extraordinary it was for an infant that young to already be engaging socially through laughter. 

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On the day of the peds appointments, it made the most sense for me to take Henry in the morning and for Jim to take Penny in the afternoon, while I picked Olivia up from school. Henry’s appointment was a nonevent. He had surpassed his birth weight and was apparently thriving. I had no anxiety about Penny’s appointment because she was clearly fine, and any worry or concern we had was unfounded. They were going to check her urine, laugh at us for being over cautious. I remember talking to Jim on the phone as I pulled up in front of Olivia’s school. "There is something weird," he told me, "but they are going to send it to the lab, and it is probably nothing." A dear friend happened to be in front of the school at the same moment. I mentioned my concern to her briefly and she assured me it was nothing. For some reason, this part always sticks out, the worry on her face paired with her desire to comfort me in the moment.  

We met up at home. We put the kids to bed. We made rice and melted Trader Joe's frozen orange chicken. We sat on the couch. Jim got an email with Penny's lab results. Minutes later the phone rang. Time to go. Pack a bag. You'll be there a few days. I might never eat orange chicken again. 

From there I have only snapshots. Penny in a hospital bed. Needles so tiny I can hardly see them. Nurses cooing over Henry sleeping in the stroller bassinet in Penny's room. Being baffled that the hospital cafeteria would give her pancakes but not fresh fruit. Jim holding me. Me holding Jim. Both of us holding Olivia trying to explain things neither of us fully understood yet. Henry laughing. My dad and my stepmom and Jim's mom and dad showing up to fill in the gaps at a time when Jim and I were almost all gaps. Nursing Henry in our bed while Penny slept beside him, her body curled around him, her breathing slow and even.  Counting her breaths, reassuring myself. She's breathing. He's breathing. I'm breathing. We are all still alive. 

I lost his entire first year. I don't remember when Henry rolled over. I don't remember when he crawled or walked or started solids. I couldn't tell you when he cut his first tooth, how he handled his first fever, or even what his first word was. That year is another entry on the list of things Type 1 stole from me. I don't remember so much about that first year of his life. It is lost to me in a haze of panic and stress that I am still recovering from.

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I do remember his laugh. I do remember that he was alway there, in my arms, with his heart on his sleeve and his easy smile. I do remember the weight of his tiny body against mine in the middle of the night when I was sure I could not ever again take a full breath, reminding me that he was breathing. I am breathing. We are all still alive. 

 

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 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. 

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.

Two weeks after dx.

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



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.

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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. 

The Tale of the Small House

I often have this dream, where we live exactly where we live, but suddenly, after years of living here, I find a door or an archway or an opening into a new space. Sometimes it is an extra room and sometimes it is a garden. At first, it is a relief. I start to imagine what this new space will mean for us. Inevitably, I find the extra room is attached to a busy bank lobby separated only by curtains, or the garden is overrun with terrible, wild beasts. Even in my dreams, more space isn't really the answer. 

 Love grows in a small house.

Love grows in a small house.

We live in a small house. We live in a small house in a large city with big housing problem. I can't tell you our square-footage, because I don't know it, but it is small. It's not Tiny House small, but you get the idea. 

 The forest

The forest

We have two small bedrooms and one impossibly small bathroom, and yet, somehow, all five beating hearts manage to squeeze their way into it, en masse, at least once a day. Ah, the joys of family togetherness. 

 O cookin' on the the O'Keefe 

O cookin' on the the O'Keefe 

There are advantages. I love my antique O'Keefe & Merritt stove more that I hate not having a dishwasher. While I hate our impossible closet situation, I love that my kitchen door opens up to some outside space with trees and room to play. They call it "the forest" and while our more rural friends would be right to laugh at them, it warms my heart, when on a cloudy afternoon, they insist on flashlights before entering its leafy depths. I love the vintage details and the craftsmanship of old construction and the way the hardwood floors creak in only predictable places. I love having a parking spot right outside my kitchen door and having a garage in which I can hide Christmas decorations, old paperbacks and my shame. I love it here: the neighborhood, my neighbors, Jim's 2.5 mile commute. Living here means he is home before 6:00pm almost every night. I especially love that. 

Living within earshot of my children has shaped the way I parent. We never had a baby monitor. There was no need. We are on top of each other almost all the time. We chuckle when O says she is afraid to be alone at night, with only one wall to separate us at all times. 

It takes organization. It takes discipline. It takes patience and compassion, and maybe I'm just rationalizing, but I really believe that love grows in a small house, or at least, ours has. 

Sunday Guest Blog: Um...Yeah, Kids Notice

J: O, what are you doing?

O: Watching TV and taking care of my baby, 'cause that's what grown-ups do.

So, yeah, kids notice. They watch, they listen, they learn. And I'm ok with the fact that O has observed my bouncing a crying baby to sleep while catching up on The Daily Show, or more embarrassingly, Hell's Kitchen.

It's just a reminder. You are being watched, and more importantly, your behavior will be emulated, both now and in the future.

Bedtime: the Battle and the War

O: I'm never going to sleep. I'm going to be awake forever. You can't make me sleep and I won't.

Tonight's bedtime was epic. It was a toy-throwing, tantrum-filled, they-are-lucky-that-they-are-cute, kind of bedtime.  It was the kind of bedtime where there had to be ice in the water, where P had to go potty three separate times, where we switched pajamas and rubbed lotion on their feet. It was the kind of bedtime where you wonder what you are doing wrong. (Best guess-everything)

It was the kind of bedtime that made me want a glass of wine.

I remember watching the sitcoms of my childhood, where parents happily bundled the adorable children off to bed: a story book, a kiss on the forehead, tucked in tight, done. That is not what it looks like over here. Maybe at some point, it will, but not now. Right now, it's a battle or maybe a war. Some nights we make ground, and feel like we might be winning. Tonight was not one of those nights.

Tomorrow will be different, maybe better, maybe worse, but they are asleep, for now. 

Somebody, send help, or maybe just more wine. 

 

Discomfortable

O: Mom, I'm discomfortable. I'm too too hot. 

K: Take off your jacket.

O: But then I'll be cold like a popsicle.

When it comes to ambient temperature, O has about a three degree window of comfort. She is hungry constantly, except when she's not, and then she will pick delicately at whatever is placed in front of her. She is often hungry for only one particular food group, usually carbohydrates, namely bread. 

O: But Mommy, I'm not apple hungry. I'm bread hungry.

K: Aren't we all, kiddo. Aren't we all?

 Hard work and a sandy tushy are rarely comfortable, but so worth it. 

Hard work and a sandy tushy are rarely comfortable, but so worth it. 

I feel responsible to provide for my children's basic needs: food, shelter, clothing, and so on. I even feel responsible to provide them with an engaging and enriching life: swim lessons, education, vacations, trips to museums. As O gets older and more self-sufficient, however, I feel less and less responsible for her overall comfort. Even as I'm typing this I realize how harsh that might sound. I really don't care much about her comfort. 

I want her to have agency and understand consequences. I want her to make the choice to not carry her jacket and then deal with the natural consequence that extends from that choice.  

But even beyond that, I don't want her to always be comfortable. Most of the big, wonderful things in life are uncomfortable at some point. Learning something new, putting yourself out there for a new relationship, getting your PhD, mastering a skill, swimming in the big pool, these things are not comfortable. They require someone with the resilience to move through discomfort, to see the big picture, to chase the dream.

Unfortunately, what that looks like right now is my dragging a hungry, inappropriately dressed preschooler through the world, while she wails that her bag is too heavy and her shoes hurt her feet, while I stride forward, deaf to her cries and blind to the judgmental stares from anyone in earshot. Mostly. 

Mother of the year.