The Best Kind of Different: Our Family's Journey With Asperger's Syndrome (5 page)

By the time they left, I was wiped out from the move. I assumed it was because of all I was juggling as an essentially single mom. But I was
really
exhausted. Like, I could barely get up some mornings. I would fall asleep if I was just sitting still. I would ask Curt a question and forget it by the time I got to the kitchen. I had always prided myself on being organized and on top of things. This made no sense at all.

“You need to go to a doctor,” my mom said. My father echoed that sentiment.

“I don’t have time,” I said.

But then Curt chimed in and insisted I go. The regular doctor sent me to an endocrinologist. The endocrinologist discovered that I had Hashimoto’s disease. Long story short: My thyroid wasn’t working. I’d have to go on medication and be on it for the rest of my life.

It’s a good thing I went. I don’t know how long I could have kept all the balls in the air the way I needed to without addressing my health. I had a lot on my plate. Life was hectic. But it was also good. Curt and I felt blessed with three beautiful—highly active—kids, and fortunate to have the chance to continue to make this crazy baseball life work as best we could.

three

The Longest Car Ride Begins

I
TELL MYSELF THE REASON
I
DIDN’T NOTICE ANYTHING DIFFERENT
about Grant during the first few years of his life is that I was completely overwhelmed.

Gehrig and Gabby were still pretty little, so I was juggling three kids on my own almost all the time. When Grant would scream and cry and fuss in his baby seat as I drove the kids to visit Curt at spring training, I didn’t stop to think, “Gee, the first two didn’t cry quite as often, now did they?” I was too busy making sure everyone was dressed and fed and packed up in the car for our many road trips. I figured that chaos—and crying and screaming—were fairly normal, given our situation. I kick myself now for not paying closer attention.

As Roberto Clemente once said, baseball has been very good to me. I loved so many aspects of our life during the years Curt was playing. There were thrilling experiences—going to the World Series four times, winning three times, once with the Diamondbacks and twice with the Red Sox. Having grown up with very little, I’m very grateful for all that the game has brought into our lives and all that it has afforded me.

Still, as well versed as I’d been in moving and life alone before Curt and I had kids, nothing could have prepared me for what being a baseball wife meant once we had three kids. Having my husband essentially out of the house for eight or nine months of the year meant raising Gehrig, Gabby, and Grant mostly alone. On top of that there were all those moves. The kids would go in and out of preschools and schools, and I’d have to make sure that all the transitions went smoothly. Change was a constant in our life, and I had to stay on top of it.

I might have made things easier for myself by getting some help, but I couldn’t bring myself to do that. Determined to be a great stayathome mother like my mom had been, I refused to get a nanny. Even though we had struggled financially when I was growing up, my mother felt it was important to be at home for us instead of getting a job. In the late seventies, when other girls showed up at school with the latest designer clothes, I remember thinking,
Why can’t she go to work so I can have those things, too?
But in hindsight, I understand how valuable it was that she was there every day when my younger brother and I went off to school, and when we returned. She kept her eye out for us at all times—and for all the other kids in the neighborhood, too. She was the neighborhood matriarch, a fun mom everyone loved. She always made sure we enjoyed being kids, festively decorating the house for all the holidays, from Halloween to Christmas to Easter.

I admired the model my mother had set for me, and with three kids of my own, I felt that getting babysitters all the time or hiring a nanny would mean I wasn’t living up to her image. More than that, I was selfconscious about people judging me now that I was the wife of an upandcoming baseball player. I was uncomfortable suddenly having money, and found that it could make situations awkward and unpleasant. Sadly, some people from the past—people in our families—even stopped talking to me because of it. I still can’t believe that ties were severed over money. I thought that if I had help, even more people would look at me with a mix of envy and disdain and say,
“Well, she has it
easy
. She’s not doing
anything
.” I cared too much about what people thought, and I felt that having help would erase everything I did as a mother in the eyes of others. So I had no babysitter, no nanny, and I took my kids with me everywhere.

What complicated things even more when Grant was little was the fact that in 2001 I received a diagnosis and intensive surgical treatment for melanoma. It started with a spot on my back. It had been there awhile. My brother and sisterinlaw had each said something to me about it. I’d attempted to see a couple of different dermatologists a year or two before, when we were living in Philadelphia, but for some reason those appointments got canceled, and I didn’t follow through with them. Maybe I was in denial.

At a physical in Arizona after Curt’s trade, the doctor immediately noticed that spot on my back. “I don’t like that,” he said. “I need to remove it.” I didn’t think it was a big deal. I didn’t argue with him and just said, “Go ahead.” It seemed good to get it over with. Maybe I could even avoid the lecture about how bad the sun was for you, not to mention tanning beds. Of course, I’d heard of sunscreen and knew there was this thing called “skin cancer,” but I never paid much attention to it.

I had been a serious sun worshipper. As a teen, I broiled myself on my parents’ tarcovered roof, slathered in baby oil. Each season I made a point of getting a stingy red burn first, to establish a “base” for a nice tan. Just thinking about it hurts. It’s amazing when you think about how much we didn’t know only a short time ago. Tanning beds became a regular part of my life in my twenties. They provided a way to maintain a golden glow yearround and they were a serious timesaver for a busy person. As the technology advanced, some tanning places had the ability to administer a fiveminute shot of radiation that was the equivalent of sitting in the sun for thirty minutes. I could fry myself in between the pediatrician’s office and the grocery store without missing a beat. It was a way of life for me in those days. I had a permatan.

After removing the growth from my back, the doctor sent it to a lab for a biopsy. It never occurred to me that it might come back positive for cancer, but it did. The doctor called the next day and said I had to go see a plastic surgeon. Not only did I have skin cancer, but I had the deadly kind: melanoma. In all, I had to undergo five surgeries on my back and front to remove all the malignancy, all the while wondering,
What if they can’t get it all? What if it comes back?

Shortly after my surgeries were completed, Curt was featured in a story on ESPN because he was going to be in the 2001 AllStar game. The news of my cancer had made it around the clubhouse, and the reporter asked Curt about it. Then they sent another reporter to interview us.

At first I felt the woman wasn’t taking me—or skin cancer—seriously. I felt almost mocked by her. Finally, I said to her, “I’m not going to be a part of this piece unless you show pictures.” She seemed taken aback. Then I showed her pictures—like the area where they removed six inches of skin from my back. The reporter changed her tone with me. I’d finally gotten through to her.

Once ESPN ran the segment, suddenly everyone wanted to interview us.
People
magazine did a big article, and many other publications and television shows jumped on board with our human interest story.

There went my privacy. I’d barely had time to heal inside myself—I’d been too busy holding myself together for my parents and my kids. It’s challenging having cancer as a relatively young person because you have living parents and small children around you and you have to be strong for them. My private inner struggle was suddenly very public. But that quickly became a blessing: I began receiving letters from people who had lost loved ones to melanoma, who felt their voices hadn’t been heard. Meanwhile, I hadn’t even known until my diagnosis that melanoma was deadly. It occurred to me that if I hadn’t known, probably many other people didn’t know, either. With that in mind, Curt and I started the SHADE Foundation, an organization dedicated to educating people
about skin cancers and sun safety and raising money to provide shade coverings for playgrounds so fewer children would get melanoma.

It was an incredibly fulfilling thing, a way to take my struggle and turn it into something positive. The only problem was that it was one more thing to do; it forced me to fight even harder to keep my balance.

O
N
C
URT’S BIRTHDAY
, N
OVEMBER
14, 2001, he got a gift I promise you he will never get from me again: I found out I was pregnant with Garrison, our fourth child. A few weeks before Garrison was born, I was at a Diamondbacks game, talking to a few of the other wives about how busy I was. I explained to them about the five operations to treat my cancer, the charity work I was doing, and how I had to shuttle three kids to their appointments by myself, all the while being pregnant with my fourth.

“Shonda, are you crazy?” one of them said to me.

“You’re killing yourself doing all of this with no help,” interjected another. “What are you trying to prove?”

It was an amazingly succinct question, and one I didn’t have an answer for. Just like that they had set me straight. About six weeks before delivering Garrison, I finally hired a nanny. What a difference it made. Our home was suddenly a happier place. I could spend time with my husband. The last thing I wanted was for my condition to have an impact on his performance on the field. Spending time together helped put him at ease. At last I could go to the grocery store. I could go to PTA meetings. My parents, who’d moved to Arizona to be with us and their grandkids, could go back to being grandparents instead of babysitters.

Having the nanny around also meant I could spend time with each of my kids individually. Prior to that I’d never noticed anything different about Grant. All toddlers are challenging, I thought. Grant was simply acting his age.

I
FINALLY BEGAN TO NOTICE
some unusual things about Grant’s behavior. Grant was about three at the time, and he was moving out of the early toddler phase. He was very difficult, always saying no to everything, even to things we thought he’d want.

“Will you eat one more bite of your dinner?”

“No.”

“Can you give me a hug?”

“No.”

He’d even object to the things he’d said he wanted earlier.

“Let’s go get ice cream.”

“No.”

Out of the blue, he’d have temper tantrums and throw things. He would react in an irrational, uncontrollable manner to things that made most children just a bit emotional. There had to be a logical reason, I thought. I chalked his misbehaving up to having a new little brother. Grant was suddenly no longer the baby. That had to take its toll. Now he was one of the middle children. Yes, that must be it. The problem with that logic? Gehrig hadn’t had those problems when Gabby came along, and Gabby hadn’t had any problem when Grant arrived. But I didn’t remember any of those details at the time; it was only in hindsight that I realized how flawed my logic was.

There were other kinds of struggles. Grant had a phobia about trying anything new. I couldn’t get him to try catching a ball with a glove. I couldn’t get him to try iceskating. If there was any chance that he would fail at something, he wouldn’t even go near it. There was no coaxing him into it. He would dig his heels in and shout,
“No!”

Driving long distances with Grant was a nightmare, and we had to do that often, to go visit Curt on the road. I liked to get silly with the kids and turn up the radio. The others liked to sing songs with me and do crazy dances as we drove. But Grant would have none of it.

“Turn it off! Turn it off! Turn it off!”
he’d scream at the top of his lungs. He would scream the entire time. The rest of us would get mad at him because he was just killing a fun family moment.

I’d scream right back at him.
“You do not dictate what happens in this car!”
I’d say. He’d keep at it, though.

“Turn it off! Turn it off! Turn it off!”

I didn’t know what to do. Here I was, driving these kids for two hours each way every weekend to go see Curt at spring training, and there was now no way for me to make it fun and to help the time pass. He’d also go crazy if the other kids wanted to watch a different DVD than he did on the player in the minivan. It wasn’t just that he’d disagree. He’d have a total meltdown, crying and screaming. I always felt bad about giving in to him, yet I’d still cave. I knew it wasn’t fair at all to the other kids, but it was the only way to calm Grant down.

Those rides were awful. I would keep thinking,
Let me just get through these two hours.
Usually I’d been alone with the kids all week. I was so eager to hand them over to Curt and have a little break—I can’t even describe how badly I needed a break. Even going to the grocery store by myself seemed like a treat. Just an hour without Grant challenging me, without any yelling from him or at him, and without the others whining about Grant, was a blessing.

For some reason, I would always find myself crying in the frozen foods section, though I don’t think it had anything to do with the particular selection there. It was more that it took me a little while to get to that aisle, and by that point, after hearing a few of those sentimental oldies songs they always seem to play in the supermarket, my emotions would have gotten the better of me. It just seemed like the frozen food aisle was where it all came crashing down each week. Grant, the kids, baseball—all of it. I would cry and cry as I shopped, trying not to look anyone in the eye, and hoping people didn’t notice.