One Heck of a Year

Well, It has been a year. A year, and a new house. A year, a new house, and a baby. A year, a new house, a baby and three shows. It has been a big year. 

We bought a house, a thing I wasn't sure we would ever do, in the city that we love. A special, lovely, old house in the mid city neighborhood of Los Angeles. We moved in July and occasionally Jim and I will randomly make eye contact and just sigh at each other, saying, "I love this house." We love this house. It feels like it has a soul. It feels like home. 

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We had a baby, a boy shaped human named Jack. He is very new and very yummy. Longer and leaner than any of my other babes, I have taken to calling him Shrimpy, a nickname I am sure he will love when he is sixteen and taller than I am. It seems odd to say, since he is only six weeks old, but he strikes me as the serious sort. He will round out our crazy bunch nicely. Everyone is smitten, but Penny, who called dibs on holding him first when I was only a few weeks pregnant, is over the moon. She calls him Jacky-Wacky, and begs to hold him, especially when he is sleeping or nursing or anytime that he is content to not be held. 

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I did three shows, more than I would have normally tackled in a year before we had kids. It was a lot. It was rewarding. I'm glad I did it. I probably won't do it again. Probably. 

I did not write a single usable word. Apparently, I can not write when I am pregnant, which is perfectly fine, because I plan on NEVER BEING PREGNANT AGAIN. (#finalfelton) Also, in this past year, the way I see the world has shifted. There are realities of living in America that I didn't have to confront before, things I could look away from, that are impossible to ignore now. I've been doing a lot of listening and a lot of learning in this past year. I still have a long way to go. 

All that to say, I'm back. I'm hoping to write at least once a week, to keep a record of our big little family growing and loving each other in Los Angeles, my favorite big little city. 

Still, not sure how today ends. 

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

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)

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

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.

 

 

Rebel, Rebel

O: Why is mommy going over there?!?! She is not supposed to go over there.

J: It's ok, O. Your mom is just a little bit of a rebel. 

P: Daddy, is rebel-ing ok?

J: It is, Pen. Sometimes, it is ok to do some rebel-ing. 

I hopped a fence. Well, that is not really fair or accurate. I shimmied through a gate, and, for context, it required virtually no actual shimming. The gate on the hip high enclosure was locked, but locked so loosely most adults could easily pass through the opening. It was left more than ajar. What would that be? Open. 

It was open. It was essentially open, but I wanted to take a picture inside the burnt-out, century-old house, so I shimmied through the gate, much to the horror of my oldest daughter. Jim, who has been at this for over a decade at this point, knew better then to be horrified and just looked on bemusedly. 

I shouted over my shoulder, "Anyone want to come do some rebel-ing with me?"

O and P, in unison, "NO!"

But, I as I turned around, I saw her, just past the gate, venturing barely past the threshold of the old stone structure, my not-so-tiny P. She skittered back quickly, but not before she stopped and touched the cool stone of the decaying structure. 

It is tough. We want our kids to follow the rules and be good citizens, while at the same time, we hope to teach them to trust their judgment, and recognize when a rule is worth breaking, either because the reward out weighs the risk or, more pressing going forward, that the governing body that is creating the rules has overstepped and requires challenge. 

Side note: I hereby, acknowledge all of the very sound research about prepubescent and pubescent humans lacking the neurological ability to adequately asses risk. Please see here.

 

Regardless, it did my rebel heart good, to see my Tiny P creep past that barrier, challenging herself to take a risk and to venture into the unknown. It is something all civic minded people are going to need to engage in going forward. Sometimes, even the rebels among us might need a little inspiration. 

 

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. 

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    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."

     

     

    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. 

    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 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.