61

I'm remembering my mom today, just a little bit more than usual.

My mom and me in Paris, 1999. We Could. Not. Stop. Eating. Crepes. At the end of our trip we would buy a crepe every chance we had even if we weren't hungry, just because we could. Nutella, or swiss cheese and ham or just plain old "beurre sucre" (butter and sugar). This picture makes me smile every time I look at it. It's like a mugshot. The Crazy Crepe Eaters.
(Photo by Rick Regan)

Today she would have turned 61. Last year I had a lot more time and brain space to write a meaningful post (ah the days of uninterrupted blog writing). Every word of it still rings true today. Except of course for the now four grandchildren she never got to meet.

Gah.

Miss you and love you, Mom. Happy, happy birthday.

11

Eleven years ago today.

Every year, she gets farther and farther away. Sometimes it even feels like another lifetime.

I hate that.

I miss you every day Mom. I love you.

"Love bears all things, believes all things, hopes all things, endures all things.
Love never ends," 1 Corinthians 13

That Much Sweeter

The Breast Imaging Center at my local hospital hands out roses to all the patients. A nice touch. This rose bloomed more beautiful and longer than any rose I've received in a long time.

I spent last Thursday morning at a place no woman wants to be. The breast imaging center at our local hospital. The same hospital where I’m due to give birth to two babies in roughly five weeks.

A few months ago I found a small lump in my armpit. My gene pool is lousy with breast cancer so I immediately feared the worst. I showed it to my OB (I was fairly early in the pregnancy at the time) and she felt the lump, but told me it was probably just extra breast tissue due to hormones (did you know breast tissue extends into the arm pit? I didn’t) and blah blah blah.

Pfew.

But then a few weeks ago I noticed the lump again. And this time it was bigger. A lot bigger. My doctor felt it again at my last check-up and immediately said she wanted me to get an ultrasound, which of course, scared the hell out of me. How could this be happening? For the past seven months I’ve been getting “fun” ultrasounds. Ones that involve heart beats and little hands and feet and the discovery of hair on tiny 32 week-old heads. An armpit lump ultrasound? Decidedly not fun.

Of course, because I was so worried, there was a two hour wait at my appointment. For a five minute procedure. When I was finally called in by the cheery tech, I studied her face as she read the screen. I swear that her expression immediately went from buoyant to tragic. As she gazed at the little gray and white blob on the screen (which she pronounced as “kidney shaped”) she appeared serious, concerned. It was bad. I could just tell. She told me she’d show the scans to the doctor and he’d either come in to discuss it with me and look further, or perhaps just relay results to her. I reminded myself not to be worried if the doctor came in. It had happened when I had a mammogram a year ago and that had turned out fine.

I flipped through a wrinkled, two-year-old copy of Life & Style magazine and three minutes later, there was the doctor. He offered his hand to shake, dimmed the lights, and then immediately came the questions. How long had I had the lump? When did I first notice it? Had it gotten a lot bigger recently?

My heart began to pound. My body felt heavy. The room felt like it was getting darker, closing in around me. This could not be happening. The Doctor slid the ultrasound wand across my armpit a few more times and peered at the fuzzy screen, at my infamous kidney shaped blob. All the Good Things, all the Things To Look Forward To—the babies, the kids, Erin, seemed suddenly very far away.

And then:

“Well this looks totally normal. Benign.”

The proverbial weight lifted. But all I could think was, Why couldn’t the doctor have led with that? With normal and benign? He gave me a bunch of information about hormones and underlying infections and lymph nodes and keeping an “eye on things” but the only thing that mattered to me were the words “benign” and “normal.”

Melodrama aside, I’ll be honest. For twenty-four hours, my little life got quite a jolt. Sure, it was just a little armpit lump, but it could have been something more, something worse. As much as I tried to tell myself it would be OK, willed it to be OK, I knew. It wouldn’t necessarily be. After all, I’m a member of the Club. The Club of Bad Things. I know those things don’t just happen to other people. That as much as we can think positive and hope for the best, we’re all ultimately, just one cross town bus or extra chromsome or abnormal cell away from catastrophe. The question isn’t how could this happen to me, but rather, why shouldn’t it happen to me? To anyone? Stuff just happens. There is no explanation.

I remember after my mom died, I went through a phase where I wasn’t afraid to die. Maybe because I felt I would see her in the afterlife, so how could death be a bad thing? Although I would describe myself as faithful, my religious stance is murky. I don’t know if I’ll see her again. But what I do know is I want to be here now. There are two, almost four little people who need me. And oh, do I need them. Now is not the time to go anywhere. I know what it’s like to lose a parent. And more than that, and to make it about me, I don’t want to lose them. To lose out on raising them.

I didn’t tell anyone but Erin when I found the lump. But when the good news came, I called my dad. I told him about my fear being wrapped up in the kids, in losing them, in them losing me. We got on the subject of time and how once you have kids it seems to speed up. My dad, a practicing Buddhist talked about how difficult it is to grasp time, to appreciate the Now. We all seem to be inherently hard wired to move onto the next thing. He said what helps is to focus on the sensory experiences of life. The smells, the feels, the sounds.

And it’s funny, because the morning of the big Armpit Ultrasound, I sat with Ellie as she ate her cereal and strawberries and felt more present with her than I’ve felt with anyone, in a long time. It was an unseasonably warm day and she wore a little pink cap-sleeved top, exposing the length of her remarkably soft, chubby little arms. I couldn’t help it--I reached over and stroked her tiny arm and she looked at me as if she was about to protest, as if to say “Mommy why are you doing that?” (a common refrain), but instead she said nothing, and went on to take a sip of apple juice and another bite of cereal.

It was just a little moment. A little snapshot. But it was one that made this one, little, happy ending for now, that much sweeter.

On IEPs, Memories and Effing Cancer

Please excuse jelly face.

Today was Leo’s IEP meeting. It went very well. He’s doing great, making progress in all subjects. He can read 110 words (!) and especially enjoys science and social studies. His handwriting is improving (though I've been proud of it for a long time) and he consistently scores 100 percent on his spelling tests almost every week (my boy!). He goes to the bathroom independently and his behavior (which has never been a problem at school, thankfully) is even better than it was last year.

The only real issue is he’s been more “fidgety” lately, sometimes having a hard time sitting still and staying in his chair. The funny thing is, he still pays attention and participates, he just has to move around (play with his fingers, wiggle in his seat or stand next to it) while doing so. His teacher said she thought the long winter and lack of outdoor recesses may be contributing to this. In any case, they put a rubber cushion on his chair which seems to be helping to keep him more stationary. Hopefully spring will come SOMEDAY and these poor children will get an outdoor recess before the last day of school!

His speech is coming along. He has longer, more complex sentences and is talking a ton. But still. He’s very hard to understand. I’d be lying if I said this didn’t concern me. I know that all kids (especially kids with DS) excel in certain areas and have bigger struggles in others and speech has always been Leo’s biggest hurdle (and he certainly has a long list of successes for which I am so grateful and proud). But we were at an event on Sunday with many of Leo’s old classmates from his former school (all kids with Down syndrome) and I was honestly shocked by how amazing some of the speech was, how distinct and clear and, well, “normal” sounding. I’m not sad and I’m not comparing, it is what it is. It was just so apparent.

I feel bad for Leo because he has SO much to say and he’s such a funny, smart guy. I want the whole world to be able to understand him and get to know him. I should add that he in no way seems to let any of this get him down. He certainly has a way of getting his point across. And you should hear Ellie and his looooong debates and discussions about all sorts of topics, from princesses to pirate ships.

On a lighter note: Leo’s teacher and therapists all remarked on what an empathic guy he is. His speech therapist noted his “strong moral compass.” He’s always the first to give a pat on the back or stroke on the cheek when someone isn’t feeling well. This week the school is doing a unit on bullying and manners which involved a theater group coming in to perform skits portraying people being "nice" and "mean." Apparently Leo was outraged at some of the behavior portrayed in the skits. He was scowling and glaring at the “mean” actors and shaking his head with disappointment and disapproval.

The meeting came to end and Leo’s classmates began to arrive (Leo skipped the bus this morning and came with me, working on the computer across the room while we had the meeting). The announcements began and Leo was absolutely tickled that I was there to recite the “Pledge of Allegiance” with his class (he even helped me put my hand to my heart, in case I’d forgotten). More announcements followed after the “Pledge,” including a reminder that there would be a moment of silence for the director of special education, who died yesterday.

I was stunned. I knew she’d been ill (cancer). I knew she’d had surgery and taken a medical leave, but she came back. I had no idea how sick she had been. She was a wonderful woman. Full of life and humor—a “big” personality. She helped me a lot last year when I was having some issues with Leo’s transportation. She was a real advocate for the kids too. During a time of huge budget cuts for our town's education services, she assured me everything would stay the same for Leo and the kids in his program. And every time I talked to her she would tell me how much she and everyone else loved Leo and how “the last time she saw him he gave her a big hug.”

She was 54.

I just read her “legacy” book from the Newark Star Ledger, which followed her obituary. This is my favorite entry so far:

“Betty I know you are up in heaven where the onion dip bowl is always filled and the Raiders are on the televison 24/7. You had such a gift for making life more festive. Peace be with you old friend.”-- Judy Dunn

Every time I hear of someone dying of cancer (especially someone relatively young), of course I think of my mom. And my mom certainly pops into my mind, a little flash, I think, just about every time I go to Leo’s school. It’s a combination of things, the first being that I sometimes still can’t believe I’m someone’s mom, that I’m like, responsible for someone. Then there’s the place: an elementary school, that was my mom’s domain, for over fifteen years. She wasn’t a born teacher but she came to like certain aspects of the profession, I think. And at the very least she loved her kids (well, most of them). And one day she was teaching and doing lesson plans and correcting journals and the next day she called in sick and she never went back to school. She never got to say goodbye to her kids. And it will always break my heart to think of that.

I remember sitting in my little apartment on the upper west side of New York City on a cold March day in 2000. My mom, in a rare, unguarded moment (she was very strong and stoic throughout her illness) was crying to me over the phone, thousands of miles away in Oregon.

“I’m just afraid I’m never going to get to go back ,” she said, between tears. “That I’ll never get to say goodbye to my class.”

I dismissed that talk as “silly”—that of course she would see them. What else could I say? I didn't want what she said to come true.

There is a book that was given to my step dad and me after she died, a three ring binder of sympathy letters and cards and drawings by what seemed like hundreds of elementary school children. There were also notes and letters from her fellow teachers. I could hardly look at it, at the time. But it’s something I know I’ll want to have, someday.

I think when I’m pregnant I push the thoughts of her away more. It’s too much. I just can’t go there. My mom, who never thought she would be a grandma, on the cusp of being a grandmother of four. I Just. Can’t. Think about it.

I just hope Ms. Maddalena had a chance to say goodbye.