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What a difference a year makes.  I find myself struck day after day after day by the power of the memories of last year.  Right before Thanksgiving (last Thanksgiving), Austin had an ultrasound that revealed a new spot. New, as in not the same spot we’d been watching and worrying about all fall. So we knew, at that point, we almost, mostly, practically knew what that his cancer was back. But we weren’t quite ready to commit yet, to actually do anything about it.

So we waited, a few more weeks, for a repeat ultrasound.  And that happened on December 7. One year ago tomorrow. And that, well, you can read it here. It was a Monday and then I sent Austin back to school that Tuesday and Wednesday because I knew these would be his last days there for a good long while.  We spent one quick night in the hospital that Thursday for a CT scan and then returned the following Sunday for the next surgery and big pre-Christmas stay.

But it’s that day of school on the 8th that I remember. I dropped him off in his classroom and walked out as he cried for me, held tight in the arms of his teacher. It wasn’t unusual, he cried when I left on most days last year (and many this year). He ends up happy, within mere minutes, so I knew in my head it would be okay. What I felt in my heart was another matter. That walk out was one of the hardest things I have ever done in my life.

One of my closest friends happened to be parent helping in her daughter’s classroom that morning. And I had stopped to see her for big hugs on my way in, but I didn’t want to stop again so I walked out the door and down the path to my car, and I suddenly just lost it. Another mom came walking up, one I know well who had already read the previous night’s update and I just fell into her arms. She was holding a baby bundled in a snowsuit but managed to hold me too. And I sobbed. And I really wanted her to go back in and get my other friend for me, but I couldn’t bear that one minute when I’d be standing out there alone in the snow, while parents who didn’t yet know wandered past me. So she did the job (thanks, Lisa) and I mumbled over and over into her winter coat, “I don’t know if I can do this again. I don’t want to do this again.”

But, boy, did we do it.

On this weekend last year, we chopped down the top of a pine tree here in our new yard and brought it back to our old house to serve as our Christmas tree.  Well, it turned out to be pretty spindly and lopsided and very Charlie Brown-like:

So we made up for it yesterday by buying two trees. One for the living room, which the boys are calling their own because they finally got their wish to have colored (as opposed to my preferred white) lights. And another for the dining room, where I finally got my wish to have a perfectly color-coordinated tree.

Yup, we definitely did it.

Well, the work has begun. And my, what a lot of work it is!

We woke up yesterday morning to an army of Amish carpenters in the backyard, laying the foundation for Austin’s treehouse. I mean, his tree-village. It is enormous. I can’t quite picture how it’s going to end up but I can definitely tell that it is going to be very very large.

The boys are thrilled, of course, and eager for it to be finished. Looks to me like it should take weeks and weeks but the men said they’d be done in another four days. Which works out perfectly because we leave for Maine tomorrow (yay, finally!) until Tuesday evening, so there will be quite a sight awaiting us upon our return.

I spoke with the workers yesterday and introduced them to Austin, who smiled shyly from my arms but refused to speak or make eye contact. They asked about his story and after giving them a brief version, one man said to another, “That sounds just like your son.” Turns out one of the carpenters has a son who was diagnosed with neuroblastoma in his kidney when he was nine months old. He said for the first day or two (which happened to be Christmas Eve and Christmas), the doctors thought he had Wilms. He lost one kidney and had a full year of chemotherapy and is now a healthy and normal third grader.

One of the three brothers from the contractor company also had leukemia as a teenager and his family was sent to Disney World as a gift from Make-A-Wish. So you see how this all comes full circle. I can’t wait for the day, well into the future, when Austin or Braedan make a wish come true for some sick child and get to tell the story of their own dream treehouse and all the magical childhood memories they made in it.

Pictures to follow, I promise . . . when we return!

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.

The long awaited transfer of the keys has occurred and the house is ours!

Emily moved out yesterday and the deal officially closed, so by the time I picked Braedan up from school, we were able to walk back to our new house. Of course, there are many months ahead before we can actually call it home, but we’ve spent plenty of time there in the past thirty hours, digging up bushes, stripping wallpaper, taking down dusty old curtains. The boys have had a blast running up one flight of stairs and down another or coloring on the walls (which I made sure they understood was a special event only and not something we would do everyday on our new — about to be painted– walls!). We had a picnic on the living room floor for dinner last night which they thought was pretty fabulous.

It reminded me of the day we took possession of this house seven-and-a-half years ago. We were supposed to get the keys on March 1, which happens to be the day after my birthday. Wait, let me back up. The months surrounding our purchase of this hosue were ridiculously full. I was training for a marathon, which I was excited about but was very time consuming. We were moving into our first home, also time-consuming. We (oops, I mean) I was planning our wedding, which I loved doing but because it was out of town and because it was at my family’s summer house and not in a facility equipped for big events with things like chairs and bathrooms and dance floors, was majorly time-consuming and fairly exhausting work. And most of all, the thing that topped it all off, the thing that was almost too much on its own, was my job which I absolutely, postively hated. I don’t think I have ever hated anything more than my job that year. I was teaching middle school in Cleveland, a position I had sought out believing it was a critical time to make a difference in kids’ lives. Well, I don’t even want to reminisce about all the horrible details that made that school so awful but suffice it to say, I was exhausted and stressed, beat down day after day.

So my birthday came and I made it through one more day and came home to Mark, who was preparing to take me out to dinner, “somewhere special.” I remember that I had changed into my comfy old overalls when I got home from work and I looked at Mark and said, “You mean I have to change my clothes?” And he thought about it for a moment and shook his head no, I’d be fine just as I was.

We get in the car and he suggests we drive by the new house, which was just a few blocks from the duplex we’d been renting. Then he pulls in the driveway to “show me something” and eventually leads me in the front door where dinner is set up on the living room floor, complete with candles and balloons and my presents hiding under a wheelbarrow (the first of my new homeowner-themed gifts).

So while last night with the kids running around like madmen, doing cartwheels on a wall-to-wall carpet that will soon no longer be, was not exactly as romantic as our first first house experience eight years ago, it was a pretty happy moment nonetheless.

And now the real work begins . . .

We finally got Braedan’s teacher’s name in the mail (Mrs. Murphy) and his assigned first day (Thursday, Sept 3 — the kindergarteners are split into thirds for the first three days for a calmer transition) making this all so real.  My little guy, suddenly a big boy about to go off to real school. Wow.

It’s funny, as a child growing up and then as a young adult living in Boston or Los Angeles or San Francisco, every year on my birthday, when I’d talk to my dad on the phone, he’d always always say, “Oh, I remember the day you were born.” And I don’t think I quite believed him or at least I didn’t understand just how vivid those memories can remain, how they are totally seared into your brain, until I had kids of my own.

But of course, I remember the day Braedan was born like it was yesterday. I will spare you all the gory details (and oh my, were there gory details), but that moment when he finally let out a big cry and then the doctors held his little face up for me to see before whisking him off to the NICU (I wasn’t kidding about the gory details), that moment when I first beheld him, all bruised and scrunched up but already beautiful . . . This was my child, my son, my baby.

when I first saw his face

when I first saw his face

 And then the years went by and he was so sweet and so loving and made us laugh at the silliest times. I remember when he was about eightteen months old and he woke up in the night and called out to us, but we were still in that god-awful crying-it-out stage, so we lay in our bed carefully ignoring him, hoping he would just fall back to sleep on his own. But he kept crying and calling for us and eventually, out of a combination of frustration and clever problem solving, he shouted, “Moooooommmmmmeeeeeeee, Daaaaaaddddddddeeeeee, ANYBODY!” We both sat up and laughed so hard and then decided he had finally earned our presence and went in to get him.

"Mommy, Daddy, ANYBODY!"

"Mommy, Daddy, ANYBODY!"

And I remember once right after Austin was born, I was sitting in the rocker nursing him and reading Braedan Barnyard Dance while he acted out all the movements (“Twirl with the pig if you know how”). But there’s a line that says, “Bow to the horse, bow to the cow,” and because Braedan didn’t know what the word bow, he instead called out, “Bow wow, Horse! Bow wow, Cow!!”

Not quite sure what to think of that little brother....

Not quite sure what to think of that little brother....

And this has gone on for years, memory after memory, cute little saying after cute little saying, some written down, some lost forever. New skills attempted and new skills mastered. And then suddenly this past Saturday, he announced he was hungry for lunch, and I suggested a peanut butter (actually, sunbutter made from sunflower seeds for my allergic children) and jelly sandwich and started to move towards the kitchen to make it for him. But he placed his hand on my back and said, “It’s okay. I’ve got it, Mom,” and proceeded to make his very own and almost perfect sandwich.

Ready for anything

Ready for anything

So now, the countdown begins. We are a mere ten days away from kindergarten. Use the comments section to share your family’s back-to-school traditions, the best trying-something-new-but-scary-and-exciting books, your funny memories so we can all be better prepared.  And by “all,” I mean both Braedan and me.

April 22, 1986 was a Tuesday. I had just finished last period gym class and was in the locker room with my 7th grade gang of girlfriends deciding whose house to go to after school.  This decision usually involved three factors: whose house followed the same walking route as wherever our gang of boyfriends was headed, whose house had the best snacks and whose mom didn’t mind when her home was invaded by twelve giggling girls. (We did not travel light in those day.)

I, so often the ringleader, shook my head and said, “Can’t. I have a doctor’s appointment.”

“Again? You had one last week! Is this about that thing in your eye again?” asked one girlfriend referring to an unexplained stye the week before.

“No, my mom thinks I have diabetes.” I said this casually because I didn’t really think it could be true. I suppose if I had thought about it carefully enough, as I would years later, I’d have been able to admit that I wasn’t myself lately. I was tired and cold, lacking some of my usual tom-boy-but-girly-girl, jock-in-cute-clothing energy. I didn’t feel like myself. But I still didn’t think I could have that.

“No WAY!” Sarah shouted, suddenly all riled up. “My sister has diabetes. There is NO WAY you have it.”

There, she was clearly an expert. Pit her against my mother and her dog-eared Dr. Spock book. So what if I’d been chugging through the week’s supply of milk by Wednesday? So what if I’d gone from already thin to downright gaunt? Sarah knew what she was talking about.

But I parted ways with my friends and trudged on home where my mom and my six-week-old brother escorted me to our pediatrician’s office. I guess I wasn’t really surprised when he walked through the door, after checking the results of a quick finger prick blood test, placed his hands squarely on my knees and looked me in the eyes. This grandfatherly man, who I’d known all my life, now on the verge of retirement.

“Does diabetes run in your family?”

“Nope.” Still casual.

“Well, now it does.”

That was the first time a doctor’s words changed my life.

He told us to go home, pack a bag and head to Rainbow. All of this sounded fine to me until he said I’d be in the hospital for five to seven days. That was not okay.  Chronic disease or not, I had a school dance to go to on Friday afternoon. And hospital or not, I had a boy to slow dance with.

But — doctor’s orders, so home we went and, while my mom fixed dinner for my brothers, I packed my bag with a phone cradled under my ear, calling as many girlfriends as I could manage. Most were shocked, one cried, my best friend’s brother thought I was kidding. More than one asked, “But what about Friday?” This dance was no small matter.

My dad came home from work early and we headed down to Rainbow Babies’ & Children’s, a hospital that would become my second home more than two decades later. The four of us boarded the elevator — 13-year-old me, consumed with the horrors of missing the school dance, my parents, consumed with the horrors of having a suddenly sick child, and my baby brother, strapped onto my dad’s chest in what we now know is a Bjorn but what they then thought was a “Snugglie.”

Now this next part I don’t actually remember, being as consumed as I was with above-mentioned horrors, but my mom told me about it many years later. The elevator door opened before we reached our floor to let on a boy, just about my age, except that he was in a wheelchair. And he was bald.

You know what they thought. My parents, whose world had turned upside down, who were overwhelmed with shock, fear and worry . . . you know what they thought. It’s what most of us would think. At least it’s not cancer. They leaned into each other, in their safe corner of the elevator, and they knew. They knew that we could do this. They knew that we would be okay.

And we were, but I’m not there yet. Minutes later we were settling into my room, answering question after question from doctor after doctor and nurse after nurse and intern after intern. And every single time someone new walked in, my mom would announce, unasked, unprovoked, that I had gotten my first period the week before. Can you say mortified? This could not possibly be relevant! I would scowl and hiss, “Mah-ahm,” turning that simple short word into two suddenly vicious syllables.

She said it hopefully, as if she actually expected some doctor to throw his clipboard into the air and exclaim, “Oh, that explains it! The ol’ first period-diabetes diagnosis mix-up again!”

No such luck there. Instead I stayed in the hospital for five days, learning how to test my blood sugar and count my carbs and administer my shots. My parents and brothers had to learn too, how to spot a low-blood sugar reaction and what to do about it, what it felt like to give and get a shot. We went around the room, first practicing with saline-filled syringes on oranges and then on each other’s arms. Take that, brothers, who were mostly concerned with whether or not they could still eat donuts on Saturday mornings.

But we all learned and we all made the necessary life changes and we took it in stride. I took it in stride. Right at that moment when I gaining some independence from my parents, diabetes just became another part of taking care of myself. It just became another part of who I was, who I am.

And don’t worry, I didn’t forget: The hospital granted me a two-hour leave of absence on Friday afternoon and my parents picked me up in the minivan and dropped me at my middle school for the dance. I mean, THE dance.

And yes, I got my slow dance.

February 2020
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February 2020
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