How It All Began

How on earth did we end up here? That’s what was running through my subconscious as I attempted to fall asleep in a hospital room on Monday, July 30, 2007, with Austin in a crib beside me. How did this happen?

An excerpt from that, you know, “book” of mine.

I won’t go all the way back, but just know that Austin was a healthy, happy and totally normal little guy for many months. In the end of June of that year, he had his nine-month check-up with his pediatrician Dr. Senders, a legend of pediatric care in our community. Mark and I sat down with this doctor when I was pregnant with Braedan and he sold me after five minutes of explaining his Daily Dose of Reading program. A doctor who spends his free time and money and energy encouraging families to read to their young children? This was my kind of guy. Then he said it wasn’t his job to tell us how to raise our kids, but to “guide and support” us, as no one would know our children better than we would. So much for interviewing three pediatricians—I signed up then and there.

So I brought Austin in for the usual well visit—a few vaccinations, his latest height and weight, and a general check-up. My little guy was in tip-top shape except that Dr. Senders thought he heard a tiny murmur when he listened to his heart. He explained that there could be a small hole in Austin’s heart which he assured me was not a huge concern as they’re relatively common and often heal on their own. I have friends whose children had holes like that which healed so I was genuinely not worried. I’m just not a nervous parent, I do not envision horrid diseases every time my kids cough or hiccup. Dr. Senders recommended Austin see a pediatric cardiologist to determine if we needed to take any further action. He referred me to Dr. Bockhoven, affiliated with Akron Children’s and not our home hospital, because I’d be able to get a quicker appointment.

“Wait a minute,” I interrupted while he wrote down the name and number. “I thought you said it was no big deal. Why do I need such a fast appointment?” I was still calm but not as calm as I’d been two minutes before.

“No, it’s not a big deal.” Reassurance. That’s all parents really need. “But I think you’d like to hear that from a specialist. This is more for you than for Austin.” More reassurance.

So, truly not fazed by this news, I went home and the issue completely slipped my mind. My girlfriend Becky asked me about it a few weeks later and I guiltily realized I hadn’t followed through; I had actually forgotten about it! Proof that I was indeed not worried about Austin’s heart, and the first of many lucky breaks. I finally called and Dr. Bockhoven could have fit me in the very next week except that I was planning to take the boys to my family’s summer house on Lake Chautauqua for two weeks. No problem, they scheduled me for the Monday after our vacation.

We spent two lovely weeks up at the lake. My parents were there, providing necessary help since Mark came only on the weekends. Every evening as I sat nursing Austin on the little second floor porch-turned-nursery, I could hear the sound of Braedan’s endless chatter wafting through the air as he and my mom worked in the yard, he pruning bushes with kid scissors and she gardening without the harsh sun. Braedan, you see, is a constant talker. He’s been narrating our every move since he was one-and-a-half, talking from the moment he wakes up until the moment he goes to bed (and sometimes even in his sleep). I have never met a three-year-old with a vocabulary like his. He uses words like “splendid” and “impressed:” “I am so impwessed you finished that puzzle, Mommy.” He also say things like, “My body is telling me it doesn’t want carrots” or “My body feels like it needs ice cream” because when he was potty-training, Mark and I used to tell him to listen to his body. Ha!

He and my mom are two peas in a pod, they’re so deeply connected. It’s not your regular love between a grandmother and her first-born grandchild; it’s like they’re buddies. They relish being together and never tire of each other’s company. So evening gardening is a sacred activity for them both.

I was struck during our Chautauqua weeks by how quickly Austin was growing: he was pulling himself up to standing and playing independently and acting like such a big boy. Every time I turned around, he’d be into something new, constantly exploring and totally fearless, unlike his cautious older brother. Classic second child, I thought, a fearless second myself. My parents took Austin and Braedan to the small-town amusement park on two (blessedly quiet) occasions and Austin did great without me, happily eating ice cream and watching his big brother enjoy the rides. Life was moving along at a fine pace with no worries.

And I was moving along, already ready for the next big thing. Mark and I had been told in pretty clear terms that having another biological child was “not medically advisable.” I’ve had type 1 diabetes for twenty-one years, you see, and two pregnancies were more than enough burden on my body. I’m healthy, always have been, but I do have a serious disease … something I need to remind myself of every now and then. I love my boys, there is no doubt about that, but I’ve never been afraid to admit that I want a daughter. It’s not just the adorable little girl outfits and decorating a nursery in the colors of the moment (although admittedly that sounds pretty great); it’s the later-on stuff, the growing up, planning the wedding, watching a daughter birth a child. My mom and I are very close. We love being together, we relate and connect and talk each other’s ears off. And I want that. So Mark and I’ve been thinking about adoption. We have a lot of love to share, we can afford it, there’s no good reason not to. Or at least there wasn’t right then as I sat up in my Chautauqua room each night completely engrossed in a new book about international adoption, already envisioning bringing our future daughter home from Guatemala or China.

It wasn’t all rosy though. Austin was fussy at night after having been a fairly good sleeper, but he also grew five new teeth during those two weeks, something I ended up repeating to doctor after doctor and nurse after nurse and intern after intern when they all walked through our door and recorded our history, always including the question, “Has he been in any pain lately? Fussier than usual?” Well, as anyone with small children knows, cutting five teeth is a rather unpleasant experience (for parent and child!), so any unusual fussiness got chalked up to that.

A few days before our trip was scheduled to end, my dad commented on Austin’s belly, asking me if it was always so hard. I looked at it and felt it and agreed that it was slightly distended but it really didn’t alarm me. Babies get that look of big firm belly with skinny limbs when they’re gassy or constipated and my response was simply, “Maybe he has to poop.” Even now, now that I know the truth behind that big belly, I don’t look back and think, “God, I should have known something was wrong.” It just looked full. And I blew it off.

But there is a moment, one that I play over and over in my mind, that happened on our last night there. Mark had come for the weekend, along with our friends and their two-year old daughter, so there was much wine and laughter over Saturday night’s long dinner. It was late and Mark had fallen asleep putting Braedan to bed (shocker, right? Who’s ever heard of a husband failing to emerge from bedtime?). Austin had been up and down, asleep and awake throughout the evening and was very hard to soothe. I had finally given up on rocking him in his bedroom and had taken him outside. We were sitting on the front porch, just the two of us, and I was holding him in my arms as I sat on a swinging chair, and he just wouldn’t stop crying. And I remember so distinctly, like it was yesterday, cradling him in my arms and whispering in his ear, “Austin honey, I don’t know what’s wrong with you.” Oh, I shake my head when I picture the two of us there on that dark and starry night because if I had tried to imagine what might possibly be wrong with him, I could not have even come close. Not even close.

The next day came and as I was packing all our gear and getting everything ready for the car ride home, my mom watched Austin, since Mark and Braedan were already on the road. But my mom, who never calls when she’s babysitting an unhappy child, who never asks for help or complains when a grandchild in her care is missing his own mother, this time, this day, she brought Austin back to me and said she thought there was something wrong. She thought his stomach hurt, because he kept rubbing his side. Yes, that very side that my dad had questioned just a few days prior. So I changed him and nursed him and away we went, leaving our relaxing vacation and our normal lives in our wake.

We got home and you know how it is: there are piles of mail to go through and phone messages to return, laundry to be done and groceries to be bought. Mark stayed home Monday morning because we were about to begin a partial kitchen renovation (how’s that for great timing?) and he wanted to meet with the contractor. Another lucky break since Braedan stayed with him instead of coming to Dr. Bockhoven’s with me and Austin. I packed lunch so we could run a zillion errands afterward, and we headed off for what we thought was a regular old doctor’s appointment. And here’s where we began our dizzying descent into another, much darker, world.

In walked Dr. Bockhoven, the first of many heroes we would encounter in this great saga, who, after one glance, felt Austin’s stomach and voiced concern: “Does his belly always look like that?” He sent us for the scheduled ECHO which happened to include an abdominal ultrasound. And it lasted forever. Really, we were up on that table together for more than an hour. Austin was crying, I was lying there on my side nursing him and thinking how glad I was that Braedan wasn’t with us, and the technician, this lovely older woman, just kept checking and checking and checking. It didn’t quite occur to me until afterwards that she spent way more time looking at Austin’s side than at his heart, the original purpose of our visit. Before we walked out, she asked if I had any other children and then handed me two stuffed animals and wished me a gushing and solemn farewell. I thought she was being friendly or felt bad that it had all taken so long. I didn’t understand that she had just made a terrible discovery.

Dr. Bockhoven, who had been watching on his office computer, met us at the door and led us down the hall past the room where our stroller and lunches and normal lives were waiting and into another room where he pointed to the phone and said that Dr. Senders wanted to talk to me. I sort of chuckled as I picked up, making some stupid joke about this not being routine protocol and nodded my head as he told me that my baby had a seven-by-seven centimeter mass in his belly. (We learned the next day that it was quite a bit bigger but seven-by-seven sounded plenty big to me at that moment.) That moment. The moment that sits like a big fat black smudge down the center of the page that is our lives, dividing everything into before and after. There is no real way to describe it. I cannot separate out all that came next, all that I now know, from my innocence and naiveté at that particular moment in time. I’d like to say the world stopped spinning but it was more like the world started spinning faster and I stopped. “Surreal,” though overused is the only accurate word. I remember Dr. Senders asking me how Austin was right then and I laughed and said he was eating the phone cord and wriggling to get free from my tightening grip. Totally normal Austin behavior. This child? This child has a tumor?

I have to admit, as implausible as it sounds, that I did not think cancer. Well, I’m sure I must have thought it but I did not believe at that moment that my child had cancer. Dr. Sendres had said the word “mass” actually, not tumor. And what the hell is a mass anyway? That’s not necessarily bad, right? . . . Right?

Dr. Bockhoven and I walked back to the room where we had started hours earlier, when we were different people, and he tried to explain things to me. I remained calm, nodding my head, not grasping the severity of the situation or at least not allowing myself to. Dr. Bockhoven was apologetic, sorry that he, a total stranger, was the one to break this news. And, while he no doubt has to share bad news with parents, this bad news is of a completely different nature. Tumor discovery is not his area of expertise. I thanked him time and again because, truly, he went above and beyond. He could have easily sent us back to our regular doctor with a simple, “You should probably have this looked at.” And you know me, I would have waited until Kirk and Sarah’s baby shower was over and the kitchen was finished and back in order before I would have gotten around to making another appointment.

No such pause here. Instead I’d been told by Dr. Senders to go home, pack a bag and check in at the emergency room. “No need to run red lights,” he told me so I tried to sit calmly through them but was getting increasingly anxious by my inability to reach Mark. He was not answering his cell or the home phone, and Mark is outrageously reliable, always there when you need him. I ate my peanut butter and jelly sandwich on the drive (isn’t peanut butter and jelly supposed to make everything better?) and Austin, exhausted from what we then considered a major medical procedure (oh, irony), quickly fell asleep in his car seat. I got home where there was still no sign of Mark despite his car in the driveway, and Morey, our contractor, had questions. Leaving Austin asleep outside, I brushed Morey off and started grabbing clothes out of the enormous pile of laundry to throw into my overnight bag. I was later able to laugh at the outfits I picked; you would have thought I was going on a tropical vacation with the assortment of cute summer skirts I threw in there. I was rushing around trying to remember my glasses and diabetes supplies and feeling so thankful that I actually had a charged cell phone (a total rarity for me, the queen of the dead cell phone). Morey stopped me to say he couldn’t find Mark and needed the dimensions of the fridge we’d ordered, but his words took on a Charlie-Brown’s-grandma-on-the-phone quality, so I interrupted: “Tell Mark he needs to call me. Austin has a, a thing. A mass. Something growing inside his stomach that isn’t supposed to be there.” There: I’d said it out loud. And finally, for the first time, I started to cry. But there was no time for this, so I left Morey confused and guilty as I peeled away.

And lo and behold, right as I reached the corner, Mark appeared, finishing up a run with Braedan asleep in the jogging stroller. I waved him over impatiently and it all came tumbling out, words and sobs and fear and uncertainty. He was calm (Mark is always calm), said he’d bring Braedan to his parents’ house on the other side of town and meet me at the hospital. He kissed me, told me he loved me and rushed home to find Morey running down the driveway to repeat the news.

I called my mom, not expecting her to be home from Chautauqua yet but figuring I could leave a message. Well, she answered and now I had said it three times to three people, “Austin has a tumor,” and it was starting to feel real. The cloud of calm, the swirling strangeness of the morning, the fog I had inadvertently walked into, was starting to lift and I was slowly realizing that this nightmare was happening. This was actually happening. She asked a bunch of questions to which I had few answers and said she’d meet me at the hospital.

Here comes another part that I can now laugh at because it is just so me. Dr. Senders had told me to use the valet parking outside the emergency room, but I, little Miss Independent, I-refuse-to-admit-that-this-is-a-real-emergency, decided instead that I would park in the parking garage just like everyone else. Only the parking garage I chose happens to be located many a secret corridor away from the ER. So there I was, one hand pushing a stroller that held only my overnight bag, with a sleeping Austin in my arm, as I wandered around the basement hallways for a good fifteen minutes, one tunnel leading to another, every sign pointing back the way I had just come. I was down by the loading docks—maintenance guys were driving little tow-lifts around—and nobody could seem to point me in the right direction! I had fallen into the rabbit hole, Alice in my own awful wonderland.

Finally a sympathetic woman walked me from one winding hallway to another and into the back entrance of the emergency room. They whisked us right in—they’d been expecting us—and I was steered to a row of seats in the back to wait for Transport, which was basically someone to walk us back up to what would soon become “our floor” and which (of course) was where I had started out fifteen long minutes before. This is when I bumped into Marissa, a woman I knew from our community Baby & Me many years earlier. A pediatrician doing an ER fellowship, she had taken the call from Dr. Senders describing our case. But it wasn’t until she saw us that she realized she knew me. As Transport arrived and I got up to leave, she gave me a hug and said, “We can treat this. This is one we can treat.” Damn right they can treat this, they better treat it.

It had never occurred to me that it might be something they couldn’t treat.

I was led back upstairs via a much more direct route, and through two sets of doors where washed our hands in between because of “compromised immunology,” a little sign of what was to come. My mom was already there, wondering what on earth had taken me so long, and there were a zillion nurses checking us in and doctors and residents and interns coming through and taking our history and making notes and nodding reassuringly. And Austin, he was just as regular as could be, playful, wanting to get down on the ground and crawl, totally oblivious to the crisis brewing around him. My brother Kirk showed up, all too familiar with that hospital since Sarah had been released just the day before after ten inpatient days to stop pre-term labor. I hadn’t even been over to visit her yet—that was on my list for the afternoon, along with cooking them dinner. Kirk handed me a pen and a notebook and told me to write down the names of all the doctors I’d meet and any questions that popped into my mind. I took it, thanked him and, that night when they’d all gone off to their own safe beds, I started writing. And never stopped.

The rest of the afternoon was a blur. Mark arrived shortly and we stood shoulder to shoulder while a flood of doctors marched through our space, asking the same questions as the one before them. We were transported back to the basement for an abdominal ultrasound. At some point in the evening, we remembered to order sandwiches from the cafeteria. Later, after everyone else had left, Mark and I sat in the dark hospital room with Austin asleep in the crib next to us. We talked in hushed tones, not quite able to finish our thoughts, starting sentences and then trailing off into nothingness.

Dr. Senders appeared, long past the time he should have been home with his own children, for what amounted to a counseling session. But we were so not ready for all that he told us—it was so much more than we could wrap our heads around. He talked about the stages of grief and how Mark and I might each be in a different stage at any given moment and how important it would be for us to be aware of one another’s needs. He talked about Braedan and how we had the power to shape this journey for him, not by being falsely optimistic or hiding the truth, but by answering his questions and providing him with just enough information—and not too much—so he would feel safe. He talked about all the help we’d get from others and warned us not to let coordinating that help become an extra burden. He said we were about to start a marathon, one we hadn’t trained for, and that we needed to pace ourselves and rest on the rare downhill because we were bound to hit spots that would be harder than we could ever imagine. He promised us we would reach the finish line. And I, needing something concrete to hold on to, grasped at his literal words and felt optimistic—I’ve run marathons! I can do this! But I had no idea.

Before he left, he said that that particular day, July 30, 2007, was the first day of the next stage of our lives. Everything after that day would be different than everything that had come before. But we weren’t ready to know that yet.

We had no idea.