Friday, August 23, 2013

August and everything after


Last week, I was able to put a barrette in Gracie's hair for the first time and it stayed that way for maybe four or five minutes. It was a huge moment, the first time she's had enough hair to accessorize, and I took a great deal of pictures and she knew it was huge and she smiled real big and felt it in her hair, but didn't try to yank it out for, as I said, at least four or five minutes, when it was on the verge of falling out anyway.



Two weeks ago, we celebrated our annual Hamilton family summer vacation week away in Maine. As the tradition goes, we dressed the whole crew of kids up in matching pajamas and attempted to take a picture that included all faces, looking in one direction, not crying. I looked back at videos of the photo shoot later that night and watched Noah. Every clip showed him holding his sister close on his lap or trying to make the other kids laugh. He is the oldest and he is starting to own it and I'm proud.

They are here. The little ones I dreamed about for oh-so-long, they're here they're here. I can't believe them, can't believe our fortune.

I watch these two and try in my mind to record every moment and some moments, the wearisome ones, go in slow motion, but the rest fly by as years do.

The day I found out I was pregnant with Noah, I immediately drove to my parent's house bursting with the news. I held it in when I arrived, waiting for the perfect moment. Timing can be so strange. We were sitting at the kitchen table and mom, who'd been diagnosed with ovarian cancer three years prior, started to cry and she said, "We have something to tell you." And then they told me mom was BRCA2 positive, results were in, that's why the cancer. And mom cried more because of what this meant for her kids, but as a 29 year old brand new pregnant lady, I saw this as the perfect opportunity to introduce my new little 4 week old fetus with some line like, "Well, that will be important information for me to pass along to...[ta da! here's my news!]"

The second time I found out I was pregnant, I was in my mom's hospice room. My body producing new life, and hers, exhausted, slipping away from us.

At some point, and not too late, you have to do something with this rather crucial piece of information about your potentially, uh... blemished genetic makeup. I saw a prophylactic surgeon a couple months ago, and she put things in fast forward.

"Are you done having kids?" she asked me to begin the conversation.

"Uh, yeahhhhh, maaaaaybe. Should I be? I guess I am, but maybe not for sure. Um. Yes. Yeah, we're done." (And in my mind, of course, I'm still clinging to thoughts of the third 'accidental' child I had been holding out hope for.)

She was kind and waited for me to verbalize this decision we'd made, to silence myself and make eye contact again.

"OK. I am here to advocate for your children. The recommendation is simple. When you are done having kids, if you are BRCA positive, we recommend prophylactic oophorectomy as soon as possible. You should really consider doing this. He sure can't raise those kids by himself (gesturing to John)." We laughed. "You are at risk now and if you get this cancer, you are probably not going to make it."  I guess you can be as honest as you have to be when speaking in hypotheticals.

So after five years of wondering if I would do it, when I would do it, and what I would do after I knew, I decided to get the blessed blood test. I took the little ones with me, stared at them the whole time with anxious and damp eyes.

"So Mommy, why are we going to the hospital and not just the doctor's office if you just need to make sure your blood is okay?" Noah asked on the way. He asked more questions as I attempted upbeat, simple answers, until he felt satisfied that all was probably fine.

I read every word of the paperwork slowly, stared at the collection of numbers and letters that designate the exact mutation site found in my mom's BRCA 2 gene. I looked at the summary of my family history, made up of each person with likely or confirmed BRCA mutation, all with a status listed alongside their names. Deceased, deceased, breast cancer survivor. I looked around the breast cancer center waiting room, at women in head scarfs and tired faces. My kids sat, one in a waiting room chair, the other in a stroller, each blissfully snacking on goldfish.

I wheeled Grace into the room, walked slowly at Noah's pace. I didn't watch the needle go in, but instead answered questions about the kids to the phlebotomist, who called me sweetie and honey many times and I wanted to thank her for it.

And then, I can only assume, my blood got shipped off to the BRCA Screwed or Spared Center... or something like that.

And now? We wait until next Wednesday night when we have our scheduled call with the genetic counselor, who will report whether I am positive or negative for the mutation, flip of a coin odds. The plan, of course, is to have the little ones tucked snug in their beds at this hour, so that we can sit and hear the news and process quietly together. But in reality, of course, it will be one of the nights when we hear from upstairs, "Mooooommmy? I need to be wiped" and "Mama Mommy Daddy Daddy Mommy Noah. Help. Binkie." And a-bang bang bang stomp stomp waaah. That's what we'll hear and actually, that's what we'll need to hear.

I talk about my mom so much in these posts, and her cancer, and my kids, of course, and how it's all intertwined and wound in between and how life and death talk to each other when we look closely enough. It all feels so self-indulgent and makes me cringe a little as I re-read it. But, at the same time, at this point, right now, I can't imagine what I would write about if not this. I think I do need to capture all this somehow. But next post will be different, uplifting! Or... if not the next one, definitely the next one after that.

I asked my dad the other day if I looked like Grace when I was a baby and without hesitation, he said, "Exactly." I looked at some pictures, which I hadn't seen in years, and I said, "Yeah, exactly. Huh." John and I have created these amazing little lives from our own and it's all so crazy and oh my God they're here our angels are here. So, now we'll see which side the coin landed on 34 years ago when I started becoming me. And maybe it's bad and I'll have to get the same organs removed that produced my babies and sustained them for the first few months of their lives. Remove what once defined my womanhood, all so I can hang onto this beautiful life.