August 2020 Newsletter: You’ll blow us all away

Dear Morgan,

How does a b***ard, orphan, son of a…

Oh, wait. That’s not right! It’s just that we’ve been watching Hamilton on an endless loop for the last month, so that seems like the appropriate introduction for everything. On any given day, at any given time, you can count on either one of us to blurt out a random Hamilton quote, generally sung at the top of our lungs. Randy doesn’t get it. He just doesn’t understand (yet) that there is rarely a situation in life for which a Hamilton quote is not fitting. Hey, and if you don’t know, now you know.

Right now, as I type this, you’re sitting on the couch directly across from me, brushing your incredibly long, still-very-blonde hair. Your limbs are long, your body no longer that of a little kid. Occasionally you look over at me and smile, and I find myself watching you, completely stunned by your beauty. When you smile, you knock me out, I fall apart. Physical beauty means very little in life and I regularly preach about how it has no real relevance. But between you and me, kid, you’re the most gorgeous human I’ve ever laid eyes on.

You turn 11 today (woohoo!) and as you inch closer and closer to being a teenager, you continue to learn who you are and where you fit in this world. Your self-discovery is fascinating process to watch! Your sense of humor is the best! You love cheesy jokes, and your timing and delivery of them are always spot on. You are artistic and creative. You have the biggest heart of any person I know. You’re developing a unique sense of personal style and recently started wearing makeup (just a little, but it’s enough to freak Randy right out). As your mother, it’s difficult to capture the myriad of emotions I feel as you turn another year older. On one hand, I reminisce about those early years and mourn the swift passage of time. On the other hand, I love seeing you develop a sense of self and I’m inexplicably proud of who you are at this exact moment. Pride is not the word I’m looking for, there is so much more inside me now.

I am confident that this year of life will be forever etched into your memory. For one, we are in the midst of a global pandemic. The ease with which I type those words is almost comical; it doesn’t seem real! Unfortunately, it’s very real and the last several months have been incredibly challenging in many ways. In addition to the pandemic, there have been a variety of social issues that you’ve taken deep interest in. We, as humans, have a tendency to avoid things that make us uncomfortable. We push away what we can never understand. We push away the unimaginable. But you don’t shy away from the difficult or scary conversations. You want to learn about the world beyond your immediate vision, and you want to do whatever you can to make things better.

This spring, we attended a Black Lives Matter march together at your request. Revolution is messy but now is the time to stand! I don’t have the words to describe what it felt like seeing you half-hanging out of the car, proudly holding your handmade sign out the window. I hope that this part of you, the one that recognizes the plight of others and has the courage to take a stand, only continues to grow. You’ve got so much fight within you, and if you channel that drive in the right direction, you’ll be an unstoppable force for good. The plan is to fan this spark into a flame.

There have been at least a million times in your life that I’ve wished time would pause. If there is a silver lining to this pandemic, its that the pace of our lives has slowed significantly. For all the difficulties and trials this year has brought with it, it has also blessed us with the invaluable gift of time together. School was shut down in March, so you finished the year online at home (you weren’t at all sad about missing your May Day Festival, but said that you would have appreciated your last day of elementary school more had you known it’d be your last). We spent the spring and summer crafting, exploring the outdoors around our home, watching movies together (you suddenly love romantic comedies, but documentaries are still our favorite) and spending days at the lake.

I know some parents have struggled with having their children home for this extended period of time, but I truly don’t understand or relate to that. You are quite literally my favorite person in the world to spend time with and having you home has been a dream come true for me (except, of course, for the nightmare taking place around us). I’m convinced that even in the worst of situations, there is always something to be grateful for: oftentimes you’re that thing for me. Times are hard right now, I won’t attempt to dispute that. But when we’re sitting together on a paddle board, in the middle of a beautiful lake, laughing as we eat the snacks we’ve taken out on the water with us, I can’t help but think, “Look around, look around at how lucky we are to be alive right now!”

One of the most significant changes for our family in the last year has been me starting a new medication called Trikafta. Because of this, I’ve been able to be a more active and involved mom. In recent months, for the first time in your life, you’ve seen me run, ride a bike, and swim (not just dip my feet in the water) — things that were previously out of the question for me. Last winter, we went sledding with Tommy’s family and at one point Luke wanted me to sled down the hill with him, so I RAN UP THE HILL to meet him, just like that! I was so surprised and pleased that I did it again and again, with you by my side and Randy cheering from below. We celebrated together that day on the hill, but that night, as I was putting you to bed, I saw that you were crying big, heavy tears. When I asked what was wrong, you assured me that they weren’t sad tears, you were just so happy that I ran up the hill.

You understand that it’s not just one hill or a single bicycle ride, it’s what those things mean on a grander scale. You’ve seen some incredibly difficult things when it comes to my health. You’ve spent more time within the walls of a hospital than a child should ever have to. You understand the ugliness of this disease which means that you also understand how remarkable these improvements are. I imagine death so much it feels more like a memory. But now? Those thoughts are fewer and farther between; they’ve been replaced with thoughts of gratitude, wonderment, and appreciation.

Recently, you rescued two brand new baby birds from imminent death by cat. Against every piece of advice I’ve ever heard about birds, I let you bring them home (admittedly, I fully expected them to die that first night). You researched and learned how to care for them, spent every waking hour thinking of them, and made sure all their needs were met even when it meant waking up every few hours throughout the night. You grew to love those birds so much in the couple weeks they were with us. Eventually, the time came to send them out into the world. You’d done everything you set out to do: you gave them a chance at life.

As we watched the first bird hop out of the nesting box and take flight, my thoughts turned to you, my own little baby bird. It won’t be long before you’ll also be spreading your wings, going out into the world on your own. If we lay a strong enough foundation, we’ll pass it on to you, we’ll give the world to you. I fervently hope that we’ll have given you the best chance possible. I hope you look for adventure and new horizons. I pray that you’ll feed your curiosity. Read. Explore. Try. Fail. Try again. Acquire knowledge and seek wisdom. Be an active participant in creating connection, goodness, and justice. Do not throw away your shot.

And finally, I wanna talk about what I have learned, the hard-won wisdom I have earned. You’ll grow up to realize this world isn’t always a kind place; it is wracked with pain and inequality and heartache, but it’s also chock-full of beauty and laced with opportunity. There will be difficult times, that is one of the few guarantees I can offer. Life doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes. The good news is, you get to choose which paths to take and what to do with the trials you are dealt. I have a feeling that you’ll be able to manage it all rather well. Not only that, but I firmly believe you’re going to change the world… one handmade poster, ridiculous joke, and baby bird at a time.

Someday, someday, yeah you’ll blow us all away.

Happy birthday, sweet girl!
Love, Mama

…and Peggy!
(Just because I knew this one would make you giggle.)

August 2019 Newsletter: Pretty is as pretty does

Dear Morgan,

Your birthday has come and gone which means that you’re a ten-year-old. Double digits, kiddo. A pre-teen or “tween” if you will (but please don’t because I hate that term). I’m constantly in awe of the fact that, in what seems like the blink of an eye, you’ve grown from a chubby-cheeked, fuzzy-headed baby to this intelligent, sarcastic, talented, and sassy young lady. If you know where the time has gone, can you please tell me?

Morgan, sometimes these letters are pretty lighthearted, but there’s something a bit more serious that I want to address right away. As you’ve gotten older, I’ve seen something happen that concerns me. You’ve suddenly become very aware of the way other people view you, and I can see you becoming more self-conscious and unsure of yourself. You frequently tell me that you wish you were prettier, and it shatters my heart every single time. I was a child who didn’t believe I was beautiful. I struggled with my self-confidence and body image so much more than I ever let on, so I know firsthand how real and challenging those feelings can be.

I’ve tried so hard to teach you that the content of your heart is far more important than your physical appearance. I’ve strived to instill in you the knowledge that who you are and the way you treat others is the truest test of beauty. Yet I know that it takes more than a mother’s words to make you believe those things. Morgan, if you could only see the way the rest of the world sees you, you would never question your worth or beauty again.

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Earlier this year, a dear friend of yours died. You’d been visiting Candace in a nursing home for the past four years, after watching a documentary about the healing power of music. In this documentary, you saw a man visiting nursing homes across the country, playing music for people with dementia and Alzheimer’s, and you cried when you learned how lonely some of the elderly residents of these homes are. At your behest, we began visiting a local care center, which is where you met Candace.

The two of you immediately hit it off and became fast friends. You’d take her cookies and small gifts, attend events with the residents, and simply provide company and companionship for those who needed it. You made other friends there as well, but none quite as dear to you as Candy. When she died, you were heartbroken. That’s another experience of yours that I can deeply relate to – I’ve also lost many close friends, and although I hate that you’ve felt that specific kind of pain, I also know that it makes you treasure your friendships and appreciate life’s precious moments even more. Being acquainted with death gives one the opportunity to be bursting with life, and you, my dear, are full of more life and love than anyone I know.

You’ve always had the ability to make connections and build genuine friendships with others, regardless of age, gender, ability, or anything else. You love without condition or reservation. You’ve made an effort to include and befriend kids who are teased at school. You love and care for animals to an extent that is immeasurable. You once walked down the street in the pouring rain to deliver a giant teddy bear to our neighbor whose daughter is disabled, because you knew it would bring a smile to her face. One day, you came home from school crying because you thought someone was making fun of me, and it hurt you so deeply (this was the day you learned that “yo mama” jokes actually have nothing to do with your mother). You once put gloves on, grabbed a garbage bag, and walked around the neighborhood gathering trash because “we need to be nicer to our planet.”

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Morgan, if more people were like you, our world would be a much better place. Like, “world peace, no more war, love everyone, happily ever after” kind of better. Until your hair isn’t cooperating and you can’t get it to look the way you want, because then it’s more like “watch out, everyone for themselves, hunker down and ride out the storm.” Your capacity for being grumpy and exhibiting sassiness are as immense as your capacity for love. Just another thing about you that reminds me of myself which is, frankly, terrifying.

Last fall you got a horse, which was a dream come true for you. This summer we’ve spent a lot of time, as a family, working with him and teaching you what it takes to be a horse owner. It’s a lot of work, and certainly not all fun and games (like when you get bucked off) but you’re loving it. Your current hero is Amberly Snyder – a champion barrel racer who was paralyzed in a car accident, but went on to compete, becoming the only paralyzed barrel racer in the United States. The other day, we were driving home from the grocery store and you casually said, “I like Amberly Snyder because she’s strong. I think she’s the second strongest fighter I know of.” I thought that was a peculiar thing to say, so I asked, “The second? Who is the strongest fighter?” That’s when you looked at me and sweetly said, “You are, mama.”

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I cried then, and I’ve cried every time I’ve thought of that moment since. You frequently tell me how proud you are to be my daughter, that I’m strong because of all the medical procedures I’ve been through, and that you want to be like me when you grow up. Can I tell you a secret, baby girl? You are so much like me that it’s a little bit ridiculous. But you’ve also been blessed with amazing qualities that are uniquely yours. You’ve been through a lot in your young life, but you’ve never stopped loving or sharing your light with others. You’re my hero, and if we’re being completely honest, you should know that I consistently strive to be more like you.

Oh, and one more thing. No matter what you say or whether you believe it right now, you will always be the most beautiful human being I have ever known.

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Love,
Mom

Right here, right now

(Originally posted on Instagram, I thought I’d share here as well.)

It’s an FUCF kind of night! ⁣The kind of night that steals usual bedtime giggles, snuggles and tender 9-year-old-prayers and replaces them with worry, tears, and a kind of fervent praying that a child her age shouldn’t be so familiar with.⁣⁣

“I’m worried that I won’t have you for a long time,” she says through tears. These nights are happening more often as she gets older, even though I’ve been quite healthy. She knows the reality of CF and it’s something that haunts her. ⁣⁣

There are moments that no parenting book, no advice from loved ones, or nuggets of wisdom you’ve picked up along the way can prepare you for. ⁣Moments that feel like a fist tightening around your heart, making it nearly impossible to think or even breathe.

These moments, the ones when her eyes are filled with fear and her cheeks are tear-stained, always take my breath away. ⁣⁣

⁣⁣I tell her: ⁣⁣
“It’s okay to be worried. ⁣⁣
It’s okay to get sad.⁣⁣
But I’m right here, right now. ⁣⁣
And that’s amazing!” ⁣⁣

I reassure her. I promise her I’m fighting my hardest every single day. I tell her about the new medications that have recently come out, and even more that are being worked on. I hold her hand, caress her hair, and tell her that perhaps we can help each other be brave. ⁣⁣

She doesn’t know that she already makes me brave. She doesn’t realize that I had no clue what life was supposed to be about until she came into mine. She couldn’t possibly know all that she’s gotten me through already, or that I say the same prayer that she does every night of my life.⁣

⁣She has no idea how often I say to myself: ⁣⁣
”It’s okay to be worried.⁣⁣
It’s okay to get sad.⁣⁣
But I’m right here, right now. ⁣⁣
And that’s amazing!” ⁣

September 2018 Newsletter: We’ve got some catching up to do

Dear Morgan,

The last time I wrote one of these newsletters, you had just turned five years old. You and I had both just started school: you, kindergarten and I, my second attempt at college. Your dad and I had divorced earlier in the year, and the two of us (you and I) were still getting used to the many ways in which our lives had suddenly changed.

Now, four years later, you’re nine years old and in fourth grade, and I’ll be graduating in the spring. It’s been a busy few years! I’m happy to report that we’ve settled into a new and wonderful life together. Oh, and there’s another thing: it’s no longer just the two of us…

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Meeting Randy was unexpected and without a doubt one of the very best things that has ever happened, not just to me, but to us. When Randy and I first started dating, you’d frequently see text notifications come across my phone screen and you’d shout, “Mom, Randy Hanks is texting you!” If I was talking with someone on the phone, you’d excitedly interrupt asking, “Are you talking to Randy Hanks?” He was never simply Randy to you, always Randy Hanks.

Your cousins caught on to this, and even still, more than two years later, the youngest boys still frequently call him by first and last name. I have to admit that even I’ve been sucked in! His contact information remains exactly as it was when I first entered it into my phone (many people have their partner listed in a less formal way), because seeing his full name show up when he calls or texts always reminds me of how excited you’d get when the words “Randy Hanks” flashed across my screen.

The first time you met him, he was walking to the front door of our apartment and you stood there, with the door slightly ajar, peering through the crack. Before he could knock, you threw open the door and very seriously asked, “are you Randy Hanks?” He and I both expected a full-on interrogation about the nature of his intentions with your mother but, much to my surprise, you took it pretty easy on him… that first day at least.

You, baby girl, are actually a big part of the reason I fell in love with Randy. Because I took my role as single mother and independent woman very seriously, I had built incredibly tall, thick walls around the two of us. But seeing you and Randy together – the level of trust you had in him, the way he immediately took to you as if you were his own – sure enough, those walls came down (quicker than you can say “Randy Hanks” three times fast).

You are smart, Morgan. I suspected this about you from a very early age but with each passing year, you prove just how true it really is. I took you to a book fair when you were in first grade and upon arriving, the woman behind the cash register enthusiastically pointed us in the direction of the “princess and fairy” books. She was very excited about them and thought that certainly you, an adorable little girl, would be as well. That’s when you looked at me, rolled your eyes, then turned back to her and matter-of-fairly said, “I’m interested in ocean life, weather patterns, and the human body.”

You recently used the phrase “fully-articulated” in a sentence, and when I asked if you knew what that meant, you correctly explained it to me. Another subject you can give a detailed explanation of is cystic fibrosis. You’ve always been interested in my health, and that interest has only intensified over the years. You understand my disease on a level that many adults in my life still do not. When you were six years old, something happened that I will never forget. Your questions about CF became more frequent and more serious until one day, the inevitable happened. “Mama, will you die from CF?”

There is nothing in the world that can prepare a parent for those kind of questions. I’ve always promised to be honest with you, but in that moment, I thought about lying. After a moment of silence, I took your hand and, just as we have done so many other times, we sat together, held onto one another and proceeded to have an extremely difficult conversation.

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In recent weeks, two things have happened that have made me realize just how grown up you’re becoming. The first took place on your first day back to school. You didn’t ask me to walk you to your class! Not only that, but as you and your cousins hopped on your bikes to ride to school together, you didn’t even look back at me! I’ve always treasured those first days of school when you would clutch my hand so tightly, pull me down the hallway and into your classroom, then right up to your desk. It always made me feel good, in a way, knowing that you hated to leave me as much as I hated seeing you go. But not this year…

The second thing happened when you went to San Diego with your grandma and grandpa over Labor Day. The first day you were gone, we talked on the phone for about 5 minutes, but by the second or third day, I was lucky if I got to speak to you for two. You were having so much fun and were easily distracted. Talking to Mom just wasn’t your biggest priority. It was painful for me to realize that you didn’t need me as much as you have in the past. And even though that’s precisely the point — to raise an autonomous child who can navigate this world with confidence — I’ve been forced to admit that I’m not quite ready for all this.

And maybe that’s okay. Our relationship has always been a little unconventional. So even though I’m the mom, I might need you to lead the way sometimes. To tell me when it’s time to let go a little, to help me have the courage to speak the truth even when it’s scary, or encourage me to let my walls down in order to allow something wonderful to happen.

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I promise to do better and be more accepting of these things if you promise to CALL YOUR MOTHER the next time you go out of town!

Love,
Mom

 

 

August 2014 Newsletter: Five years old

Dear Morgan,

Well, kiddo, you turned five years old this month. Which means that I haven’t written for an entire year! Remember when I used to write every month? Where in the world did I find the time to do that? Without a doubt this past year has been the most chaotic and life-altering for you so far. Years from now when you’re reading these letters, you’ll have a much better understanding of the things that have taken place over the past several months, and it is my fervent hope that your memories of this time will be of the good things rather than the difficult ones. Because Morgan, despite all the challenges and changes we’ve been through lately, we’ve had an incredible amount of fun.

 

Just the other day I was curled up on the couch while you sat on the living room floor, drawing (which is one of your very favorite things to do). As I watched your little hands working and admired the look of concentration on your face, I also began noticing other things. Your long, thin arms and legs. The way you brushed your hair behind your ear in a way that just seemed so adult-like. I listened to the big words that spilled out of your mouth as you recalled a conversation you’d had with your cousins earlier that day. I thought about how, not so long ago, your vocabulary consisted largely of babbling and high-pitched squeals, and I remembered how you used to fit so perfectly into the crook of my arm. And in that moment you suddenly seemed so old, so impossibly grown up.

Occasionally when I have these moments of realization, I panic a little. I feel like maybe I didn’t pay close enough attention, didn’t really take the time to savor all the moments we’ve shared. And that scares me a little. But all I have to do is reach back into my memory — the hours, days, weeks, months and years I’ve spent being your mother — and there you are. I remember the moment you were carefully placed into my arms and our eyes met for the very first time. I remember watching Greys Anatomy marathons when you were just a year old, and the way you’d start clapping and dancing the moment you recognized the theme song. I can almost still hear the way you called yourself “Mo-nee” before you could pronounce your name properly. I remember watching your blonde pigtails bounce wildly as you ran down a hospital hallway once when you were about three, and when you reached a chair at the end of the hallway, you threw your body into it so violently that you puked all over the seat… and then laughed hysterically. My mind is filled with thousands of memories of you, beginning on the day you were born – a day that altered my life so drastically that I sometimes feel like I’m still trying to catch my breath.

Morgan, you are such a unique child. You frequently use large words in the right context. You love to color, draw, sing, dance and do anything outdoors. You are very smart and have an ability to think logically and creatively that surprises a lot of people. You have a vivid and lively imagination and you entertain me with wild stories on a daily basis. You are stubborn and strong-willed, yet also amazingly sweet and kind. You feel your emotions in the rawest of states, and you are just as raw in your expression of them. You don’t try to mask them or keep them hidden away, you just let them fly. Whether you are enthusiastically joyful or incredibly upset, you are definitely committed to and passionate about whatever you’re feeling. This is something I love about you, but it also worries me a bit. I can assure you it is both a blessing and a curse to feel everything so deeply, and because you take after me in this way, I know you’re going to experience a good deal of heartache in life. My advice to you is to stay soft, hold onto that passion, and don’t let the world make you bitter. Because even though it hurts sometimes, life is full of more beauty and love than you can possibly imagine. Let yourself experience that.

You and I both started school last week. Kindergarten for you, college for me (I went for a semester before your dad and I were married and now, for many reasons, I’ve decided to go back). It’s been a pretty big adjustment for us and you’ve spent a good portion of the last week feeling tired and cranky. Although, if I’m being totally honest, I have to admit that I’ve been a little tired and cranky too.  It’s been exciting and scary and fun and exhausting all at the same time, but as we’re becoming used to this new schedule, things are getting better. My favorite part of most days has become that quiet time in the evening when we’re sitting in the living room together, each of us working on our own homework assignments.

Sometimes when I’m sitting in class, I find myself thinking of you and trying to imagine what you might be doing at that very moment. Are you sitting cross-legged on the floor while your teacher reads a book to the class? Are you outside on the playground? Are you sitting at your desk, working on your handwriting? It’s an interesting thing, the way an entire portion of my brain is constantly dedicated to the thought of where you are and what you’re doing at any given moment. And I don’t think I’ll ever stop feeling this way, won’t ever be able to escape the nagging hope that you’re somewhere safe, feeling happy and fulfilled. I suppose that’s what being a parent is all about. You are a part of me, after all. A living, breathing piece of my heart that walks around outside my body. And as terrifying as that can be sometimes, as vulnerable and exposed as it makes me feel, I could never thank you enough for the dimension and purpose it has added to my life.

I love you so much, baby girl, and I can’t wait to see what adventures your fifth year of life has in store for us.

Love,
Mama