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Early in Austin’s cancer journey, when I first requested wishes to transcribe onto the stars dangling from his hospital room ceiling, several people mentioned “homemade cards” in their wishes. As in, “I wish you live long enough to make plenty of homemade cards for your mom and dad.” At that point in my parenting career, with Braedan only three-and-a-half, I hadn’t yet gotten many homemade cards, or at least not many that were more than scribbles and smudges.

But now that I’m seven and a half years into motherhood, I can attest to the special joy of the homemade card. The “Look, Mom, I wrote that myself!” Or “I drew all four of us” with a headfooter father, mother, and two children, all legs and heads but no bodies.

It is the same joy that can be found in a smooshed handful of dandelions, given with pride and love. The gifts that in and of themselves mean nothing, but mean everything because of who they come from.

May all mothers know that joy. And may all children, those grown and not grown, continue to spread it.

Today’s Mother’s Day hike

I am one lucky mama.

A repost of last year’s Mother’s Day blog, just because I really love it:

Here is the latest video from Kelly Corrigan: the thank you note that moms really want and really deserve from their children on Mother’s Day.  Of course, few of us will ever hear such words pass our kids’ lips (or at least not until they have children of their own!), but we can at least hope that somewhere deep inside their beings they feel them. It’s not that we want them to owe us anything — not even thanks (although that would be nice) — but just that we all, as mothers, want our kids to be aware of how hard we try and how deeply we care and how much we love.

I’ve added a few of my own:

Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o’clock in the morning when I’m woken by some stranger taking my blood pressure. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun, like when you take a Tums right along with me before I eat my cheesy meals so we can have a “Tums race” or be “Tums buddies.” Thank you, mom, for always (or at least, often) packing the right lunch and snacks and books and toys to keep me busy through hour after hour and day after day in the hospital.  Thank you for never failing to flush my PICC line even when it’s midnight and you’ve just drifted off to sleep in your warm cozy bed. And speaking of that bed, thank you for scooting over so I can squeeze in between you and dad when I feel scared in the night. Thank you for treating me like a regular kid and letting me climb the rock wall and fall down and get hurt even when my platelets are low and my legs are already covered with purple welts.

Thank you, mom, for not forgetting about me, your healthy son. Thank you for making sure I always have fun playdates and for giving me veto power over whose house I go to, no matter how desperate you are. Thank you for emailing my teacher at the last minute so I’m not too surprised by who’s picking me up on unexpectedly long hospital days. Thank you, mom, for waking up early to bake homemade bread for the Teacher Appreciation Brunch. And for running back home to get my library book on library day so I can check out a new one. Thank you for arranging for friends to take me swimming all summer even though Austin can’t get wet. And for sneaking yogurts into my lunchbox so I can eat them away from the watchful and (understandably) jealous eyes of my brother.  Oh, and speaking of jealous, thank you for listening with respect and not getting mad when I say I’m jealous of him, even if it makes your blood boil a little. Thank you, mom, for making sure I know that I’m remembered and heard and loved.

And thank you to my mom for always managing to fit in a several-hour visit to the hospital every single day we’re there, no matter how busy you are. Thank you for shooing me away and sending me home even if Austin is screaming in your arms as I leave. Thank you for reassuring me that it will be okay and for always telling me how okay it was when I get back. And thank you for valuing my daily workout as much as I do and making sure I have time to go for a run. Thank you for loving every second you spend with him in your arms and for making it seem like I’m giving you a gift when you’re really doing me a favor.

Thank you, mom, for taking care of me when I’m sick.

And thank you, mom, for taking care of me when my brother is sick.

And thank you, my mom, for taking care of me when my son is sick.

Here is the latest video from Kelly Corrigan: the thank you note that moms really want and really deserve from their children on Mother’s Day.  Of course, few of us will ever hear such words pass our kids’ lips (or at least not until they have children of their own!), but we can at least hope that somewhere deep inside their beings they feel them. It’s not that we want them to owe us anything — not even thanks (although that would be nice) — but just that we all, as mothers, want our kids to be aware of how hard we try and how deeply we care and how much we love.

I’ve added a few of my own:

Thank you, mom, for taking care of me day and night. For holding me and rocking me back to sleep at 3 o’clock in the morning when I’m woken by some stranger taking my blood pressure. Thank you for remembering all my medications and making sure I get just the right dose at just the right time of day, and for turning it into a game or a race so it somehow feels fun, like when you take a Tums right along with me before I eat my cheesy meals so we can have a “Tums race” or be “Tums buddies.” Thank you, mom, for always (or at least, often) packing the right lunch and snacks and books and toys to keep me busy through hour after hour and day after day in the hospital.  Thank you for never failing to flush my PICC line even when it’s midnight and you’ve just drifted off to sleep in your warm cozy bed. And speaking of that bed, thank you for scooting over so I can squeeze in between you and dad when I feel scared in the night. Thank you for treating me like a regular kid and letting me climb the rock wall and fall down and get hurt even when my platelets are low and my legs are already covered with purple welts.

Thank you, mom, for not forgetting about me, your healthy son. Thank you for making sure I always have fun playdates and for giving me veto power over whose house I go to, no matter how desperate you are. Thank you for emailing my teacher at the last minute so I’m not too surprised by who’s picking me up on unexpectedly long hospital days. Thank you, mom, for waking up early to bake homemade bread for the Teacher Appreciation Brunch. And for running back home to get my library book on library day so I can check out a new one. Thank you for arranging for friends to take me swimming all summer even though Austin can’t get wet. And for sneaking yogurts into my lunchbox so I can eat them away from the watchful and (understandably) jealous eyes of my brother.  Oh, and speaking of jealous, thank you for listening with respect and not getting mad when I say I’m jealous of him, even if it makes your blood boil a little. Thank you, mom, for making sure I know that I’m remembered and heard and loved.

And thank you to my mom for always managing to fit in a several-hour visit to the hospital every single day we’re there, no matter how busy you are. Thank you for shooing me away and sending me home even if Austin is screaming in your arms as I leave. Thank you for reassuring me that it will be okay and for always telling me how okay it was when I get back. And thank you for valuing my daily workout as much as I do and making sure I have time to go for a run. Thank you for loving every second you spend with him in your arms and for making it seem like I’m giving you a gift when you’re really doing me a favor.

Thank you, mom, for taking care of me when I’m sick.

And thank you, mom, for taking care of me when my brother is sick.

And thank you, my mom, for taking care of me when my son is sick.

Mark and I went to the Rainbow Babies & Children’s Gala this past Saturday and while we were there, I bumped into a mother I had met on the floor during Austin’s first round of cancer. Her daughter also had Wilms but was diagnosed at a much older age, which is unusual for this disease which tends to strike kids under five, and it had already spread to her lungs.

I remember the day we met: A friend of mine who happened to work at the hospital back then introduced us, thinking we might want to talk since our kids had the same cancer. Well, it might have been the same but our circumstances couldn’t have been more different. We stood awkwardly in our doorway while Austin, having just celebrated his first birthday but not yet walking, crawled around on the floor and her daughter, eleven at the time, walked dizzily about the halls under a cloud of chemo.

We didn’t really have that much to say to each other that first time, both being so caught up in our own insular worlds, so we wished each other well and let it go. But we sure had a lot to say to each other on Saturday, as we stood on the ramp to the bathroom and shooed women past us so we could talk, talk, talk.

Her daughter passed away last summer, which I knew before I saw her so there was no awful moment of truth. But she was okay, this woman, she was doing well. I mean, I trust she has had horrible times and I don’t doubt that she misses her daughter every second of every day. But, even with all of that, she was fine.

Which I found enormously refreshing.

There were no tears between us as we stood there and shared our stories and expressed our sorrow for all the other has endured. We have both had terrible experiences (her’s obviously more terrible than mine), and yet we are both okay.

I am sure that some people would have looked at her that night, all dressed up and cheery, bidding on auction items with one hand and holding a glass of wine in the other, and thought she was faking it or somehow hiding her deep grief. As I am sure that some people look at me and think, “She can’t really be that okay; she must be putting up a  front and breaking down behind closed doors.” But it’s not like that. You simply learn to adapt, a child with cancer becomes another (albeit overpowering) part of your life, and you take the horrible and mix it in with the wonderful  and you find a way to live no matter what befalls you. You just keep going. Not only because you have to (which you do), but because you want to.

So there we stood in line at the bathroom, two mothers of children with cancer, one gone, one still fighting. We hugged and we smiled and we even laughed. But we never cried.

Because we are both okay.

No results yet from today’s test but have a timely post to share nonetheless.

Parenting is full of big moments, both good and bad.  Significant decisions, momentous occasions, important milestones. But sometimes it is the little moments, those small joys of parenting, that mean the most.

Snuggling in a thunderstorm, like we did last night, is one of my great joys of motherhood. The young child is awakened by the boom of thunder, cries out in the darkness wondering what just happened, immediately calmed by your presence at the door. What starts out as scary morphs into a middle-of-the-night adventure with Austin snug between us watching for flashes of lightening out the window, a grand fireworks display in the night sky. As you start to doze off, another clap jolts you back awake, little fingers gripping yours, small heart beating in your ears. Finally the rumbling would get more distant and the pause between lightening strikes would grow, grow, grow until they were none. And that small body would nuzzle in so close, so tight, drifting back to sleep.

Nothing can get to us here. Cancer is but an idea. Kidney failure insignificant. We are together in that big bed and we are safe.

We are ever-so-slowly making our way through the boxes and putting together one room at a time (or in my case, putting together a tiny corner of one room and then one tiny corner of another, as every time I wander away looking for a screwdriver or curtain rod, I end up getting sucked into something else somewhere else — and usually forgetting said screwdriver or said curtain rod). Anyway, I have pictures of the boys’ rooms to share, the colors and themes of which were chosen by each boy himself.

Here is Braedan’s blue outer-space bedroom:

Learning from the master

The highlight of the house: a connecting door to Austin’s room

And here is Austin’s red transportation-themed room:

That magical door again

As always, just a blur of motion

Their coordinating red and blue rooms remind me of one of my very favorite children’s books, I Love You The Purplest. The story answers that question that all parents of all time have heard from their children, “Which of us is your favorite? Who do you love the best?”

In this tale, a mother and her two sons head out in the evening sun to go fishing on a pond near their cabin. The one son is cautious and kind, slow and hard-working. The other is quick and lively, running and jumping about. They seek their mother’s approval on each page: Who dug up the best worms? Who’s the best fisherman? And her answers appease them both: “Why, you have the most worms and you have the liveliest worms.” Or, “You caught the most fish, but you were patient and caught the biggest fish.”

In the final pages as she tucks them into bed, each whispers in her ear, “Mama, who do you love the best?” And she answers one, “I love you the bluest.” Blue like the calm summer sky, blue like the ripples gleaming on the lake. The other she loves the reddest. Red like the flames of the fire, red like the hot desert flower.

So, tonight I will tuck my sensitive, gentle Braedan into bed in his blue room and my passionate, fiery Austin into bed in his red room. I love them the purplest.

We’ve had two very regular, average, normal days in a row. Radiation has gone smoothly (audible sigh) and Austin has even put in two appearances at school. Yesterday, he was all excited about it at the hospital, naming his classmates for the curious doctor and eagerly guessing what they’d do for an art project. Then, true to form, about two blocks from school, he suddenly decided he didn’t want to go. But I put my cancer-mother fears aside and treated this like the almost normal day that it was: I brought him into his room, held him in my lap while they finished the story already in progress, and left shortly thereafter. I did linger in the hallway for a few extra minutes, chatting with the other teachers, trying to get over my own anxiety about leaving him there without me. But I peeked in the window and he was busily working on a puzzle, so off I went to my pilates class.

Today was even better, “more smiles” reported by his teacher. Two days in a row at school, missing only the first half hour due to radiation. Not many kids have that as their tardy excuse! He put on his new snowpants all by himself, climbed the mounds of white stuff to play on the playground, went to Movement class and the library, ate his snack and played with Play-Doh. Just like any other kid. Just like any other day.

Things have been so normal, in fact, that he refused to take a nap, even when I offered to lie down with him (these early mornings on top of his not-so-great nights are killing me). So normal that, after I slaved away all yesterday afternoon making soup from my new cancer-fighting cookbook, both boys ended up eating leftover spaghetti while Mark and I loaded up on powerful antioxidants.

So normal that this afternoon when they asked for the thousandth time if we could go sledding, I came up with my thousandth excuse; really convincing ones like that I hadn’t started dinner yet or needed to go through the pile of mail putting down roots on the dining room table. As the (so normal) whining reached a feverish pitch, I stopped saying no long enough to wonder what sort of memories I’d want them to have of their mother. Should they look back years from now and remember a woman who always managed to organize the mail? (Not likely, trust me.) Who did nothing but feed them, clothe them and drive them to the hospital?

So we bundled up, Braedan out the door in record speed (funny, he’s not nearly that fast in the morning before school . . .), Austin resembling a Michelin man in all his layers of gear. I dragged them in a sled over to the park, which conveniently closes at “Dusk.” Thus ensued a conversation about what “dusk” means, which I initially described as “sunset” until I realized how hard it is to pinpoint when the sun sets if the sun hasn’t come out all day (or week). We settled on that moment when the sky turned from light gray to dark gray and headed home. But before that, both boys and their mom zipped down the hill, squealing as the snow sprayed up into our faces, fear and accomplishment blending into one. It was a quite a rush: sledding on a hill all our own, tears streaming down our cheeks from both the cold wind and the spreading laughter. This is the mom they should have memories of; this is the childhood they deserve.

So normal.

Now it’s my little one’s turn. Austin had his first solo day of preschool today and, let me tell you, it was not easy.  He’d already done two days but I was in the building for both, a fact he knew and clung to for comfort and security. Today was the day that I’d actually be leaving, my first of many hundreds of days ahead with both my boys in school.  I was excited, of course, for my 2 1/2 free hours, ready to have coffee with my mom and then take a pilates class. Austin? Not so excited.

As we walked from Braedan’s school to Austin’s, he complained the whole time, saying he didn’t want me to leave and threatening to not play with anyone (“not a single kid,” he said with defiance).  We arrived and he kept whining, “But Maaaaahhhhhhhmmmmmmeeeeeee.” We hung up his backpack, washed his hands and in we went. Find your name from the pile, greet your teacher, see who’s parent helping, check out the Lego table in the hopes it would be enticing . . . But instead he was in my arms with his shorter ones tightly wrapped around my neck and crying.

Ugh. The worst. I know we all do it. I know I had to do it with Braedan when he was starting preschool and Mommy was leaving him behind to go take care of his brand new baby brother.  I know if it were another new parent there, I would coach them through, telling them it will all be okay, this is just part of growing up. But somehow with Ausin, everything seems magnified. The very fact that we’re there, that he actually has the chance to attend preschool, seems like a huge deal. And, as I’ve said before, Austin is a wee bit attached to his momma.  Comforting him has been my main job and such a significant part of our relationship, beyond the normal mother-child bonds. My physical presence has been his source of strength for the past two-plus years.

But I had to go. So after I exited, the teacher brought him to the window and I placed my hand against his and said goodbye one last time, walking away while his cry filled the air behind me.

My mom had come to take me to coffee, a first day of school ritual. She had a gift for me, a little figurine of a woman holding a bird in her outstretched arms, letting it go.

Letting it go.

I baby Austin.

I’m sure that doesn’t come as some huge surprise, a shocking admission of illicit behavior or anything. I mean, who wouldn’t, right? There is a preciousness about him, a sacredness that makes me want to hold him and cuddle him and coddle him. And he is the consumate mama’s boy, absolutely choosing me over all others at all times. So he asks to be held and I hold him, he beckons and I come, he cries and I’m immediately there to make right whatever is wrong.

But this is not really doing either of us any favors. He has a learned helplessness that only rears its ugly head with me and Mark. He’s great with babysitters, great with his grandparents — independent and funny, easy-going and easy. But with us, he’s helpless and needy, clingy and babyish. Not all the time or anything; he is still the confident and active little boy I’ve often described. But there is a part of him that we thought he’d outgrow which instead is becoming more and more deeply ingrained in his personality.

It’s hard to know which came first — is this an actual outgrowth of all he’s been through? Pain and discomfort, separation from his parents at his scariest moments? Or have we caused it, by hovering over him, by willingly and happily giving in to his every whim? Or might it just be the way it would have always been, cancerous background or not? Of course, we’ll never know the answers to those questions. But I do know that he craves my physical presence; he wants to be touching me, holding me, whenever I’m near him. He sometimes asks to hold my hand in the car, which sounds sort of sweet but certainly isn’t safe as I reach back awkwardly to stick one hand in his while driving with the other.

I’ve realized that I am good at letting him take physical risks. I let him climb the play structures without my hand at his back; I let him race headlong down the steep part of the yard, which often ends in skinned knees. I pride myself in allowing this degree of recklessness. He falls, cries and gets back up again, as resilient as ever.

But I do not let him take emotional risks. I don’t want him to have to tough it out when he’s scared or afraid. I think a lot of parents of my generation are the same way; we don’t want our kids to feel alone or abandoned when they need us most. It is, after all, our job to protect and comfort them. But I also know that he will never gain any emotional resiliency if I don’t let him, or force him, to find ways to protect and comfort himself.

I trace a lot of this back to his treatment days when I was still nursing him. I nursed him because, not only was it the only nutritious thing he could keep down in the three days following each Friday’s chemo session, but also because it was the best way to soothe and quiet him during scary and painful medical procedures. He literally drew strength, emotional and physical, from my very body. And sometimes now, I feel as if he is doing the same thing — that he is sucking me dry, draining me emotionally and physically with his need, and with my inability to not jump when that need is expressed.

All of this has been heightened by my time here in Chautauqua, as it is only I he clings to and only I who can provide the comfort he requests. My mom has been watching us and trying to figure out how to help and how to help me guide him to greater independence. She pointed out that I often try to encourage him by assuring him that I’m present. “It’s okay, Austin, mommy is right here. I’m right next to you, you’re safe.” She suggested that instead I try to empower him to feel good and safe and okay with himself, as in, “It’s okay, Austin. You’re doing great on your own. You can do this.”  So this is what I’m now trying to do, give him the power to comfort and protect himself.

I know many of you have backgrounds in child psychology and social work and related fields and so I welcome any bits of wisdom or insight you might throw my way on this.

On a lighter note, those of you who laughed at the photos of us on our Jamaican pony adventure, will appreciate the fact that I took the boys on a drive through the countryside today, during which we stopped outside many a farm fence to get out of the car and watch the horses and cows, sheep and donkeys. You should have seen the shocked delight on Austin’s face when we actually heard a rooster crow. “Daaaht cool,” he said in his deep and breathy Dietrich voice.  After we commented on how beautiful it was, hill after rolling hill of green, I asked Braedan if he thought he might like to live out here and without missing a beat he said, “Nope.”

You can take the boys out of the Heights, but you can’t take the Heights . . . well, you know.

I think I’ve been wrong. This book started out all about Austin. And it is obviously Austin’s story that sits at the center and that moves the narrative along. But this book is really about me and about being a mother. Or a parent. Or a person, for that matter. This is a book about hardship, of course, and overcoming hardship, but it is also about appreciating the little things, about relishing the joys large and small that come your way, about remembering what’s important.

It all sounds sort of cliched, “every cloud has a silver lining,” “life is what you make of it,” but it’s still true. I guess it’s time for me to sit down and rewrite these queries from scratch with that as my selling point — the human part not just the cancer part. Who really walks into a bookstore and chooses a book about cancer anyway, unless you’re living it at that moment. It’s all pretty depressing after all. And while my book is no doubt sad, depressing it is not.

This is such a revelation for me. I’m so glad I posted those letters and got such thorough and thoughtful feedback from so many of you (through all my various modes of communication, especially — of course — Facebook) about what has kept you coming back, even when the life-and-death moments were safely behind us, and reading my every word for the past year and a half. I wish I’d done it sooner.

Thank you. Yet again . . . thank you.

Spoiler Alert: This post is not about Austin’s cancer. I know, you’re thinking, “Wait a minute! You mean there are other things in the world for Krissy to think about, write about, care about?” Actually, yes. So this one is about riding a bike.

You know how people always say, “It’s just like riding a bike,” meaning that once you’ve done it, it’s so easy to do again? Well, that’s not always the case. And this is not some great metaphor or analogy. I am literally talking about riding a bike.

Braedan learned to ride a two-wheeler without training wheels last summer, when he was just 4. We were all pretty impressed with this accomplishment, especially Braedan himself. I would take him on runs with me, which was great fun for both of us (and way easier than  pushing him in the jogging stroller). The only problem was that the bike we bought him was too tall. We knew this was the case, but figured it made sense to buy one he could grow into instead of needing to buy a new one each year. So last summer, when his feet couldn’t reach the ground, Mark or I had to race along behind him and help him stop. He grew pretty accustomed to this and I think it gave him a sense of security knowing that we were there to catch him each time he faltered (again, I mean that literally as well as figuratively).

Who needs a bike when you've got this? May 2008

Who needs a bike when you've got this? May 2008

So now that it’s finally (finally!) showing signs of springtime in Cleveland, we pulled his bike out of the garage, dusted it off and were all set to go. I excitely told him that he’d be able to ride it on his own this year without needing us to stop him every time because he’s so much taller (as evidenced by his pants that keep “shrinking”). He stood over the seat with both feet firmly on the ground while I invoked my dad’s best pre-game coaching speeches. He’d be independent, he was such a big boy, not needing his parents’ help anymore! 

To no avail. He refused to even try. “No. I can’t do it. I’ll fall.” We went back and forth, me encouraging, him denying, never getting anywhere.

“But you know how to ride a bike,” I implored. “You did this all last summer. You were great at it.”

Still nothing. So I switched tactics, reminding him that new things were hard for everyone and we all failed in the beginning but that was the only way we ever learned. Do you know how many times Babe Ruth struck out? I wanted to ask but since he doesn’t know who Babe Ruth is and doesn’t even know what striking out means, I dropped that favorite line of high school counselors everywhere.

And then I decided, without really deciding, that it would be wise to shame my child into doing something that scared him: “It was big deal that you could ride your bike when you were four,” I taunted. “But now that you’re five, everyone can ride a two-wheeler.” All the kids are doing it. Is this really the parental wisdom I want to impart? Do it because all your peers are doing it and they might laugh at you if you can’t?

Oh boy. I cleared my head and dropped the subject altogether. We played on the swingset for the rest of the morning and then I pulled them to school in the wagon. But it bothered me. Why wasn’t he willing to try? What is he so afraid of?

I don’t have the answer, no brilliant last paragraph of resolution, no touching description of Braedan zooming down the sidewalk on his big boy bike, waving goodbye over his shoulder. The bike is sitting in the garage, awaiting that moment when he decides, on his own terms, that he’s ready to try again. I know he’ll be able to do it and I know he’ll be thrilled when he does. And I know I’ll watch him proudly and then suddenly turn wistful and think, “Oh, my baby. Why does he have to grow up so fast? Why doesn’t he need me anymore?”

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