August 2013 Newsletter: Happy birthday, Morgan!

Dear Morgan,
Tomorrow you turn four years old, which I’m hoping means you’ll finally be done asking “When is it my birthday, Mom? How many days until my birthday, Mom? How many hours till my birthday, Mom? Can it please be my birthday now?” This is the first year you’ve understood what a birthday is, and it’s suddenly the most exciting thing in the whole world to you. In fact, just as I was tucking you into bed you said, “I can’t wait to be four tomorrow. Four is my very favorite!”
Lately I’ve spent a lot of time wondering which of the day to day moments that we share will stick with you and become your memories. What will become your rituals, your stories, the things you remember and can’t wait to tell your own children about? I have very clear memories from about four years old on, and a handful of slightly hazier ones from when I was just two or three. I worry sometimes that your first memories will be of me losing my patience or yelling about something that was most likely totally trivial, but for one reason or another I just couldn’t let go of at the time.
Instead, I hope your first memories are of good things like lazy days spent at the lake, eating snow cones under a shade tree at the park, racing down the water slide at the pool, lying next to each other in the bed of a truck and watching fireworks light up the sky, or running from waves on the beach and catching crabs from tide pools in California. Since I’m not working anymore (this is the first real summer break I’ve had in ten years) we were able to get out and enjoy all the fun things summer has to offer. And you, my little adventurer, have loved every minute of it! If I had to describe your personality using only a few words, I’d simply say that you are up for just about anything. Whatever we’re doing, wherever we happen to be going… you’re always excited to go along for the ride. And you hope with all your little heart that it’ll be a fast, bumpy ride with twists and turns and at least one loopty-loo along the way.
A couple weeks ago we were lucky enough to take a trip to San Diego with Grandma and Grandpa Carmody (or, as you like to call them, Grandma Candy and Grandpa Crazy) and one morning while we were there I came into the kitchen to find you talking with my aunt. You didn’t see or hear me, so for a minute or two I quietly stood there just watching you being your charming, brilliant, hilarious little self. It’s a rare thing for me to see you interact with other people independently. Usually I’m right beside you being the mom — the one telling you no, insisting that you use your inside voice, trying to teach you manners, doing my best to make sure you behave at least slightly better than a feral animal — so the side of you I get to see most often is a little more feisty, stubborn, headstrong. But there you were, politely asking if you could please have more cereal and recounting events from the previous day in such a sweet and comical way. And in that moment my heart swelled with so much love and pride that I almost couldn’t breathe. You’re absolutely amazing, stunning in every way. And I created you! I’m responsible for sharing you and all your awesomeness with the world and no matter what else I do in life, nothing will ever top that.
One of your favorite things we did while on vacation was go to the zoo. I’ve heard people talk about how cool the San Diego Zoo is, and I remember going there when I was young, but it wasn’t until going back as an adult that I realized it truly is an amazing place. Much bigger and far more impressive than the zoo we usually go to in Salt Lake City. You loved everything about it! One of those very clear memories from my early childhood is of riding the sky ride at the San Diego Zoo. I’m guessing I was maybe four or five at the time. My sisters and I were riding the Skyfari, looking down at all the trees and people and zoo attractions and I remember thinking “this is what it must feel like to fly.” And suddenly, the ride stopped.
There we were, suspended from a tiny cable in the sky, unable to do anything but wait for the cars to start moving again, and I started to panic a little. I suddenly began imagining all the terrible things that could happen to us. Our car might fall off that cable and we’d drop to our deaths, or maybe the ride wouldn’t ever start back up and we’d be stuck there forever. What would we eat? Where would we go to the bathroom? Needless to say, whatever the issue was, it was resolved quickly and we were safely back on the ground just a few minutes later, but I’m certain that my ridiculous fear of heights can be traced directly back to that incident.
Well of course you saw the sky ride almost immediately upon entering the zoo and eagerly said, “Whoa! Can we go on that, Mama?” As we stood in line waiting for our turn to board, I started feeling a little sick to my stomach. But I didn’t want you to know how scared I was because I didn’t want to make you worry or let my fear ruin the experience for you. To say you enjoyed the ride would definitely be an understatement. You loved it! Your eyes were wide with amazement as you looked down at the people and scenery so far below us. You smiled as the wind blew through your hair and caressed your face, and then you looked at me and cheerily said, “You can look down, Mom.”
You couldn’t see the way my knuckles were turning white from holding onto my seat so tightly, and I don’t think you noticed that the smile on my face was forced as I told you, “I’m actually choosing not to look down, but thanks anyway, love. Guess what? I have a secret, but I’m not going to tell you until we’re done riding, okay?” When the ride was over and we had reached the other side of the park, I said, “Wanna know my secret? I’m super duper afraid of heights!”
“Did you hear that?” my uncle Joe (who had ridden with us) asked. “You helped your Mom be brave!” You were so proud that you were able to help me, and for the next week you would randomly walk up to me, grab my hand and say, “Remember when you were scared to go in the sky and I helped you be brave?”
Morgan, I know I’ve said it before but sometimes I can’t help but look at you and wish you’d stay this way forever. You are the child that people envision when they think of what it might be like to have a family. The way you throw your head back and laugh with your whole body, the way your eyes have a constant expression of wonderment and joy in them. The way you squeal and clap when something excites you, the way you believe in magic and goodness and fairy tales. I wish you could stay this small, this uncorrupted and innocent forever. I wish that we could just stay here, here where you’re completely naive to the harsher realities of life, here where a hug from you is enough to save me from the sometimes overwhelming circumstances of adulthood.
But I know that I can’t stop time. I know that before long you’ll stumble headfirst into this thing called life, and I know you’re going to love it because it’s just  the kind of crazy trip you hope for. So I’m doing my best to brace myself for the bumpy ride I know is ahead of us. Just promise me you’ll do one thing, kiddo. Help me be brave.
Happy birthday, little love. I hope four is all you’ve been waiting for.
Love,
Mama

May 2013 Newsletter: "Almost Four"


Dear Morgan, 

It’s been a while since I’ve written. Nine months to be exact. This is the longest I’ve ever gone without giving an update and as I think back over the past several months, I realize what a mistake it was to wait so long. A lot has happened, kiddo, and you’ve changed and grown so much! There’s no way I could possibly sum it all up in one letter, but I’ll do my best to tell you what our life is like right now.

You currently love to collect things. “Treasures” as you call them. But it has to be said, your precious treasures are mostly, well… junk. Recently your obsession with this junk has become almost unmanageable. On any given day our house looks like a landfill scattered with things like bugglegum wrappers, bottlecaps, empty water bottles that now house a collection of centipedes or “roly poly” bugs, baggies full of grass and leaves, junk mail, or basically any and every random object that’s happened to spark your interest. You put these things in piles and stash them in hiding places throughout the house. And the worst part is that you remember exactly where you’ve hidden which pile of garbage and if I happen to do, I don’t know, the logical thing and throw them away, you have a complete meltdown. “My CENTIPEDES! My CANDY WRAPPERS! I put them RIGHT HERE! Where did they gooooo? Mom, this isn’t even funny anymore!” (Yes, you say that. And no, I cannot keep a straight face when you do.)

 

That’s another thing I should probably tell you about… how much you love “your” centipedes. And worms and caterpillars and beetles and moths and, well, any kind of bug you can get your hands on, really. What’s the deal with that? Didn’t your mother teach you that bugs are gross? You’ve been fond of bugs since before you could walk, but at the time I figured it was just a passing fancy. On the contrary, your love of all things creepy and crawly has only grown with time.

A few weeks ago you were at your uncle Tommy’s house playing in the dirt with your cousins when you found a worm. You immediately decided this worm was going to be your pet and gently cradled it in your hand while you continued playing. When the time came to leave, you asked if your pet worm could come home with us. Once home, you found a container, filled it with dirt and leaves and made a cozy new home for your little pet. Morgan, for several hours your entire life was about that worm. You talked to him, tried to get him to eat, even sang him a sweet little lullaby as you put him down for a nap. It was one of the strangest, but most precious things I’ve ever witnessed. But then, as I was cooking dinner, you came to me and said, “Mom, I don’t want my worm anymore. He’s broken.” And sure enough, that darn worm had mysteriously broken into three separate pieces. You insisted you had no idea what happened, that you just found him like that when he was supposed to be napping. I pretended to believe you but made a mental note to never leave you alone with a sleeping baby, just in case.

You’re very smart, Morgan. I know every parent thinks that about their children, but you’re really smart. And I’m not just talking about things like counting to 20 or being able to recite the alphabet. You’re smart in ways that I can’t really explain. You just get things. Things that a child your age should have no grasp of, yet you understand them so well. You’re also smart in that you know how to manipulate people. For instance if I tell you that no, you cannot have a popsicle right now, you know that if you sit next to your dad, put your hand on his arm, flash him those gorgeous blue eyes of yours and sweetly say, “Daddy, can I have a popsicle, pretty please?” he’s going to give in. No questions asked. You have that man wrapped around your little finger in a way that sometimes terrifies me. Which is why you won’t be allowed to date for… let’s see, you’re almost four now, so… another 31 years at least.

Someone recently asked me at what point you start saying a child is “almost” whatever age. Like, once they’re three and a half, are they suddenly almost four? Or is there a particular time between three and four when it becomes appropriate to say almost? I guess I don’t have a solid answer for that, but with your birthday being only three months away, I definitely think it’s okay to say that you’re almost four. And in your mind that means one thing – you can almost go to school! You’ve been telling people for months that you get to go to school once you turn four, and you are incredibly excited about that idea. You routinely fill your little backpack with papers and crayons, then sit in the corner of the living room “at school” for a while before you come to me asking for help with your “homework”. My little love, if you stay this excited about school beyond the first week you’re in attendance, I’ll be ecstatic!

The biggest change that has taken place in the last nine months has definitely been me quitting my job. For several reasons I chose to stop working near the end of last year and for five months now I’ve been a stay at home mom. Being able to spend each day together is something I’ve wanted since the moment I found out I was pregnant with you. And Morgan, I wish I could say it was everything I ever wanted or that it’s been the easiest and best decision I’ve ever made. But the truth is, while parts of it have been nothing short of amazing… it’s also really hard. Harder than any other job I’ve had. (I don’t know if saying that makes me a bad mom. I hope not. I hope it just means that I’m honest, and I also hope I’m not the only one who feels this way.)

There are days that end in tears, with me seriously questioning whether or not I was cut out for motherhood. More and more I’m learning how much you and I are alike, and while it’s thrilling to see so much of myself when I look at you, it’s also incredibly difficult because it means that we butt heads… a lot. You are stubborn and sassy and by far the most independent child I have ever met, and all of these things make it hard to be your mom sometimes.

When you’re old enough to read and understand what I’ve written, I don’t want you to read those paragraphs and feel bad. Because as hard as it can be, as frustrating as my days are sometimes, you are without a doubt the best thing that has ever happened to me. In a world that can be scary and confusing, you are my constant; you’re what keeps me grounded. When I start to question choices I’ve made, I can look at you and know with certainty that by bringing you into this world, I’ve done at least one thing exactly right. More than anything or any person I’ve known before, you have made me more capable of loving, have made me a stronger person by challenging me, and have taught me more about myself than I ever would have learned without you. Yes, the days are sometimes long and most of the time I feel like you’re a raging wildfire I have no hope of containing, but I’m overwhelmingly grateful that somehow I got lucky enough to spend so much of my time with the most loving and vibrant human being I’ve ever met.

And I’m confident that one day (maybe when you have a child of your own) you’ll understand what I mean when I say that you, Little One, are what drives me most crazy in life… yet somehow you’re the only thing that keeps me sane.

I love you to the moon and back, baby girl.

Love,
Mama

Random thoughts, fears, and being a rockstar

It’s been one of those weeks. The kind where the normal stresses of life blend with exhaustion, sickness and heightened emotions to create a thick grey cloud that hovers directly overhead. The kind of week that brings tear-filled telephone calls to family members and extra time spent thinking about some of the less-than-pleasant things in life.

For the fourth time in six months, I’m back in the hospital. I’ve tried to be positive and I’ve attempted to hide my frustration from that sweet little blondie who calls me “Mama.” But the fact of the matter is, this sucks! And she knows it as well as I do.

The night before I left for the hospital, Morgan slept in my bed with me. Sometime in the early morning hours, she started crying in her sleep so I pulled her closer to me, told her that I was there and tried to kiss away whatever darkness was filling her dreams. And that’s when, still asleep, she tearfully said, “But I don’t want my Mama to go to the doctor.” Right then and there, my heart shattered.

The next morning, we were just about ready to walk out the door when I knelt down to zip Morgan’s jacket up. “I don’t want you to go,” she cried. “I want you to stay at home with me.”

“I wish I could,” I told her. “But Mama needs to go to the hospital to get feeling better. I know it’s hard, but we can do this. We’re tough. We’re rockstars!”

I don’t think I’ve ever said that before. We’re rockstars? I’m not even sure where it came from, but in the moment it seemed like the right thing to say. I think I was trying to convince myself as much as I was trying to convince her… and it kinda worked.

Hours later, after once again blowing pretty dismal PFT numbers, I was making my way through the hospital to the CF clinic when I felt tears pricking the edges of my eyes. Why was I crying? I knew this was coming. I’d been sick for a couple weeks and knew a hospital stay was inevitable. I was prepared for this. I’m tough, I reminded myself, recalling the words I’d said to Morgan earlier that morning. Then I took a deep breath (well, as deep as these lungs would allow) and began silently chanting to the rhythm of my boots hitting the tile floor… I’m a rockstar, I’m a rockstar, I’m a rockstar.

There are a couple things that are bothering me more than usual this particular stay. First, the fact that Morgan has never struggled this much with me leaving home. She is beginning to realize that there is something different about me, but she’s not sure what it is or why. She asked Adam the other day, “Why does my mom have to go to the doctor a lot?” And just today it was, “Mama, do all mommies live at the hospital sometimes?”

I’ve always known she’d eventually start asking questions, but I wasn’t prepared for how difficult it would be to answer them. Serious questions deserve serious answers. I’m going to have to get a lot better at coming up with honest yet child-appropriate answers on the spot.

The other thing that is getting to me, that has been on my mind a lot these days, is how frequently my lung function is falling into a range much, much lower than I’m comfortable with. I hear it all the time: CF is a progressive disease. Slowly losing lung function over time despite making every effort to stay healthy… that is the nature of this beast. This is something I’ve always known. But now that it’s becoming a reality for me, now that I’m consistently blowing numbers 30-40% lower than just a few years ago, it’s suddenly a lot to handle. And it’s hard. Really, really hard.

But I think it’s okay to admit these things; that I’m scared about the future, that I don’t have all the answers to the hard questions, and that sometimes life is hard. I don’t think saying those things makes me any less of a person. In fact, I like to think that having those fears and learning to face them makes me stronger. Fear isn’t a pleasant emotion, but it certainly can motivate a person. Things aren’t as easy as I’d like them to be right now, and life is full of uncertainties – even more than usual, it seems – but I’m certain we’ll get through this and everything else life throws at us. Even when it’s really, really hard.

Right now Morgan is lying next to me in my hospital bed, sound asleep, but before she dozed off we were talking, our bodies sidled up next to each other and her head nestled into my neck. “I’m so happy you came to see me today,” I told her. “I’ve missed you.”

“I miss you too, Mama. But it’s okay, right?”

“Yeah, baby,” I whispered. “We’ll be okay. We’re tough.”

In fact, we’re rockstars. And rockstars never, ever give up.

August 2012 Newsletter: 3 years old


Dear Morgan, 

This weekend we celebrated your third birthday. Three years old!?! When and how did that happen? Unfortunately you weren’t able to enjoy much of your birthday this year because a few days ago you decided to try to bite your tongue off. I’m not even kidding. Had those sharp little teeth of yours bit down any further, you would have lost about half your tongue! Several hours of crying, a trip to the emergency room and one very nervous momma made for the kind of evening I don’t ever want to repeat. But the fact that you still weren’t eating (or even really opening your mouth, for that matter) by the time your birthday party rolled around meant that I got to eat your ice cream and help you blow out your candles.

Not gonna lie, that part was pretty rad.

 

 
Your dad and I have recently reached a point where we are consciously having to stop ourselves from saying certain words around you because of your fondness for repeating them. It’s not that we curse a lot… well, okay it is that. It’s exactly that. It’s not a fact I’m necessarily proud of, and I promise that we’ve both been trying to do better since you came along, but when I overhear you telling a spider “get outta my house you little bastard” I realize there is definitely room for improvement. So we’ve found ourselves replacing swear words with ridiculous things like “goo head” or “holy lampshade”. Basically anything that we can think of that we won’t be embarrassed by when you decide to repeat it in front of my grandma. 

 

One word that we’ve been saying a lot, thanks to you actually, is “soaking”. One afternoon, after spending hours in and out of the kiddie pool in the backyard, I told you that it was time to come inside because you were soaking wet and it was getting cold. “Yep, I’m soaking wet!” you said, but later it became, “That was soaking fun!” And since that day, you seem to use that word any time you need to describe something.

You’re soaking crazy, Mom.
That’s soaking awesome!
I’m soaking tired.
This mac-n-cheesaroni is soaking good!

 

Almost every day, after I pick you up from the babysitter’s and we’re on our way home you’ll ask me if Shylee is going to be there. You love your sister, always have. Only now, that love has transformed from an innocent, sweet, totally-in-awe love into the kind of love most siblings share — a teasing, competitive, I-can-totally-punch-harder-than-you type of love.
If it’s been a while since the two of you have seen each other, the first couple hours of your reunion are wonderful. You greet her with a giant hug and your enormous smile and the two of you rush into your bedroom or out into the yard to play. But it’s isn’t long before your care-free, balls out approach to life starts cramping her style and I hear Shylee shout something like, “Jenny, Morgan isn’t playing the game correctly” immediately followed by you making a mad dash through the living room butt naked, holding a headless Barbie in one hand and a handful of half-eaten crayons in the other. She likes her toys put neatly away or placed in small, organized piles in the corner of the closet. You like them dunked in the toilet, thrown down the stairs and then buried in various places throughout the backyard.
Recently (after hearing about the bug you carried around in your pocket for an entire day, occasionally pulling him out to ask “hey bug, you dead?”) a friend of mine told me that you have a very interesting personality. That you do, kiddo. In fact, I would dare say that you are the most interesting person I have ever met. You are not a typical little girl in that you absolutely love bugs, dinosaurs, tractors and monster trucks. You know the names of the Disney Princesses not because you enjoy watching princess movies, but because your sister makes you play her princess matching card game with her. You prefer movies like Megamind and Open Season over those silly ol’ princess movies any day. You love to shoot guns with your daddy, and the volume and strength with which you belch after a good drink of chocolate milk could put a drunken old man to shame. Yet you’re still very much my sweet little girl.
You love to cuddle and probably four out of five mornings you find your way to our bedroom before it’s light outside, lift up the covers and snuggle right next to me until the sun comes up. You know you have a spot next to Mama and you are always welcome to come cuddle up there.
The other night after you hurt your tongue, you slept next to me all night. As you tossed and turned, crying out at times, I thought about the events of the night and right then something happened: I got it! I suddenly understood fully and completely how a person could do anything for their child. I always knew I loved you deeply, even before you were born, there’s never been any question about that. But this was a different feeling, one I don’t really know how to articulate. This was the feeling that I never wanted to see you hurting, that I would gladly do whatever was necessary to take your pain away, that I needed to take that pain from you, even though I knew there was really nothing I could do.
Morgan, my whole life I’ve been the one in hospitals, undergoing surgery and endlessly being poked by needles, but it’s been okay. I’ve tried to be tough and most of the time I handle things with at least a little dignity. But when your dad drove us to the hospital that night, I was a total wreck. Simply anticipating the fear and discomfort you would feel was enough to break me and I cried the whole way to the hospital. Heaven forbid anything more serious ever happens to you because I almost didn’t make it through a little tongue biting!
You’ve not been yourself since your little accident. You’ve said maybe a total of 25 words in the past four days, you’ve been whiny, you’ve been sad, you’ve refused to eat (I’ve been keeping you alive with juice, Ensure and Scandi Shakes) and you haven’t been sleeping well. Just tonight, a couple hours ago in fact, you finally ate something! I gave you just a little bit of oatmeal, not expecting much but hoping you would at least try it. It took a little while for you to build up the courage, but eventually you took a bite and as soon as that oatmeal hit your belly, you immediately transformed back into the little girl I know and love so much. You shoveled the rest of the oatmeal in your mouth, then promptly asked for more.
After finishing the second bowl you began telling me all the things you’ve been dying to tell me over the past four days. It’s like all the words had built up inside of you and now that you were feeling a bit better they were just spilling out uncontrollably.
You talked while you changed into your jammies. You talked while I took your ponytails out and brushed your hair. You attempted to talk while you (gently) brushed your teeth. You talked while I tucked you in, and you continued to talk after I had kissed you goodnight and closed your bedroom door. As I quietly sat outside your door listening to you jabbering away on the other side I thought to myself, “I’m glad you’re back, kiddo. I soaking missed you!”
Love,
Mama

This Mama’s heart

… is healed just a little each time I randomly receive pictures like these throughout the day.

 

 

 

 

*Edit: My friend Holly pointed out that I didn’t give her any credit for these cute pictures,
but she is in fact the one who took all of them. And those are her very adorable little
boys in the last picture. I’m also going to take this moment to tell you how
incredible Holly has been to help out with Morgan through this and several other
hospitalizations. I wish I could get each and every one of you a Holly of your
very own because, really, everyone needs someone like her in their life.
But you can’t have my Holly so don’t even think about it.