Mothers, Daughters, Sisters, Friends

In December of 1998, I was living in San Diego, training for a new job and waiting for the lab facility my employer was building back in Texas to be completed so I could come home.  What can I say?  I'm not a California girl.  Corbin and I were engaged then, and planning our wedding, so I looked forward to every visit home with an eager heart.  It was Christmas time, I missed Corbin and my family terribly, and I could not wait to get back to Texas for a couple of weeks to just enjoy everyone.  I remember having such a happy heart walking up the driveway to my parent's home, pushing the front door open, and feeling the breath knocked right out of me.

Everywhere I looked, there were flowers.  Huge arrangements on every surface.  Immediately, I knew that something was terribly wrong.  My mother walked into the room, and her face was filled with pain.  I asked, "Where's Katie?" My baby sister had been enjoying a reckless youth at that time, and I just knew she was missing, hurt, gone.  My mom said, "She's out, she's fine, it's not her.  It's me.  I have breast cancer."

These are the four words we most dread hearing from our mothers, our daughters, our sisters and friends.  I can't even describe how it felt to hear them from my mother.  I just couldn't breathe.  I felt so many things: panic, dread, fear, anger, loss, helplessness.  I remember wanting to run out of the house and just go do something.  Fix it fast, rip it out, something.  As it was, things were already in motion.  My mother had already started her eight rounds of chemo, which would be followed by her mastectomy surgery, radiation, and bone marrow transplant.  Writing the treatments in a list like that, it may not look like much, but it was a full year of pure hell and hard work and sickness and doubt.  I still can't believe it, but my mother was so, so lucky.  She made it.  Fifteen years now.  That's fifteen years of weddings, careers, grandchildren, friends, family, life.  I will never stop being grateful that my mother is here to be a central part of my children's lives, to celebrate every holiday, and yes, even drive me crazy.  That's her job, and I'm damn glad she's here to do it.

It's October, and I can't imagine that there's anyone who doesn't know that it's breast cancer awareness month.  But, if you're like my mother was, maybe you think you're not at risk.  Her gynecologist never even performed a breast exam on her, until she came in with a lump large enough that she found it herself, accidentally.  Let me say that again: Her doctor never gave her a breast exam.  Lord, I hope there aren't any quacks like that around anymore, but if there are, may I suggest you report that asshole to the AMA and whoever else will listen.  That doctor was an idiot, yes, but my mother should have recognized that and left immediately (sorry mom, but I know you agree).  She just thought she was safe and didn't need the exam anyway.  It's a frustratingly common misconception.

You know those risk factors? Age, family history, genetics, race, menstrual history, smoking, obesity, breastfeeding and pregnancy history, etc.? More than 70% of women with breast cancer have no risk factors apart from being a woman growing older each year.  That's it.  One in eight of us will get breast cancer.  I don't care if you run marathons and don't have a single family member who has breast cancer- if you're a woman, you're at risk, period.

 Every woman who graduated from high school with me is 40 now (and then some).  Ladies, go get your mammogram.  I had my first at 35 because of my mother's diagnosis, and it's maybe two minutes of mild discomfort.  If you've had kids, you've been through a lot worse.  Actually, if you've had kids and nursed them, you can probably tuck your boobs into your pants, and you won't even blink at a mammogram.  Go do it, make your friends and sisters and cousins do it.  Care for yourselves as well as you care for your children and families.  Try to value yourself as much as your daughter does- you are everything to her.  Because hearing those four terrible words from your mother is a piece of cake compared with saying them to your child. 

I made it there.

Oh Lord, don't you HATE it when people make you look at their vacation photos?


So anyway, I just got back from New York! Let me tell you ALL about it. Not really- in fact, I didn't want to take very many photos, since I was only in town a few days and just wanted to relax. Most of the following are just random google images of places I went, and the ones I took will be obvious for their crappy quality and because, you know, I'm in them.

I took this trip for a couple of reasons. First, I desperately did not want to miss Jim's first lead in a Broadway play, and I can't even tell you how glad I am that I went. I'm not sure I can put into words how wonderful he was, and how thoroughly charming the play is. It's been so long since I've seen a Broadway show, and I had forgotten what magic they can have (except for Phantom of the Opera, which is a slow march through hell, if you ask me). I'm afraid I burst into tears during the curtain call, much to the irritation of the lady in front of us, but I was just too full of joy and pride and excitement. Y'all- he's damn good. Amazing.

Secondly, as detailed in my post at The Oxygen Mask Project, I wanted to do something for myself, to fill up the tank a little. I realized I hadn't been anywhere alone since before Elena was born, and she's seven. I strongly believe that if you're not putting your kids first, you're doing it wrong. But, I didn't put myself on the list at all, which makes me bitchy and resentful at times, even though it's my own doing. This was such a great opportunity to stretch a little, rest a little, breathe in the (admittedly foul) air, and spend time with much-loved friends and family. This trip was a bit of magic for me, and you're totally not required to sift through the photos- this post is really just a little jewel box of images for me to hold in my heart.

Thank you to Jim, Shauna, Suzanne and Peter for showing me such a wonderful time.

Special thanks to my Dad for your support of this trip.  

Friday

 

The hotel. 

First stop :) 

My sister Suzanne and her kids Gracie and Jack 

Shopping in SOHO 

Kidrobot. 

Ferrara- best cannolis ever. 

My bestie, Shauna, who graciously led me through New York like the big baby I am. Thank you so much for everything.

With Suzanne and her family. 

Peruvian dinner at Pio Pio in Hell's Kitchen.  

Saturday
 

Brunch at Balthazar (Not pictured: Peter Rosch, who held us rapt with his stories, as ever. You can enjoy his stories for yourself! My Dead Friend Sarah is available at Amazon and other fine booksellers!)

Staten Island Ferry 

Dinner at Mario Batali's Lupa. 

Rooftop drinks at Ink48. 

Jim in lights :) 

Jim with the iconic Carol Kane. Or rather, Carol with the iconic Jim Parsons. She came into his dressing room afterward to pull him out to meet someone, and said a general hello to the room, which I am totally counting as meeting her. So, we're basically best friends now.

The cast. 

With Elwood P. himself, same as he ever was. 

Times Square. 

 Sunday
 

Some serious New York bagels before I go. 

A few minutes in the park before heading home.

The Best Ever

My kids don't watch very much network TV. We usually choose Nick Jr shows or movies for them. In other words- they don't see too many commercials. Over the holiday season, there are lots of specials they want to watch- Charlie Brown, The Grinch, etc. Since they're on regular channels, commercials are unavoidable. The problem is this: Elena is six years old now, and I've noticed her focusing on ads for the SPCA, St. Jude's, UNICEF and such. I'm pretty quick with the remote and skipped over these commercials for her, but yesterday, I messed up.

We were all in the car after school, and a commercial for a local animal shelter came on. Honestly, I wasn't paying much attention to the radio, but Elena was. Suddenly, she just burst into hysterical tears. "What?!? If nobody adopts the animals, they KILL them?!?" She was just inconsolable. "People have lives, and nobody kills them- why should they kill animals? I don't want them to kill animals because I love nature and dogs and sobsobsob". I was so upset for her and proud of her at the same time. Y'all, I have never talked to her about this. She is so, so tenderhearted, and these kids have their innocence for such a short time, I just didn't think she needed to know about animal euthanasia or childhood cancers or world poverty or any of that. She'll know soon enough, and I guess I just wanted to protect her heart a bit longer.

I'm not sure I'm right about that, but the point is- I'm so proud of what she has come up with on her own. She is just a genuinely kind person, and she has such character, and I am just blown away by how fantastically wonderful she is. Several other parents have taken the time to tell me that Elena has helped their child when they were hurt or crying or upset. Jonah idolizes her, and those two are serious buddies. She graciously includes him in everything and tries to teach him new words and skills. Basically, she is just the best thing ever the end.

Full disclosure: In the middle of this whole scene, I turned around to check on Elena, and Gabby caught my attention. She rolled her eyes, jerked a thumb in Elena's direction, and said, "Drama queen!", I kid you not. She is a tiny little tough cookie, that one. But that's another story.

If I can make it there

There's a movement starting in the special needs community called The Oxygen Mask Project. The idea is based on the spiel we all have to listen to every time we get on a plane. Put the oxygen mask on yourself before you help your children, because if you go down, you can't help anybody. For parents of children with special needs like autism, it can be so, so hard to do this, but it's true. If we don't take care of ourselves, we won't be able to take care of them.

I remember when I first heard about this idea, and I thought, that's really smart. I'll just stick that idea here, at the bottom of this really long list of crap I need to do. At the top of that list was my (ultimately losing) battle with my school district over changes they had proposed for my son Jonah's special education program. For weeks, I wrote letters, yelled, pleaded, recruited, spoke at board meetings and lost sleep. In the end, I failed, and I ended up with a deep cough I can't shake and a fantastically sexy psoriasis flare.

I first developed psoriasis last year around this time. My type is caused by strep infections and/or stress. I had two strep infections within a few weeks of Jonah's start date for special ed. Again, I wasn't sleeping, I was sick with worry, and I was just plain sick. What can I say? I'm a slow learner. Here I am again, and this time I need to sit up and take notice of what my body is telling me. The problem is, I feel like a jackass, demanding a little "me time" when so much is going on. Yes, I have three young children, and two of them are twins and one of those twins is autistic. But is that enough? I mean, Jonah's pretty high functioning. It could be a lot worse, and for lots of parents, it is. I feel like there are moms out there who adopt 14 severely disabled children and spend their days smiling and counting their blessings. I sort of feel like a whiny jerk, but I'm trying to squash that feeling down and make some changes.

For me, it really helps to have something to look forward to. Something big. My friend Jim is starring in a play on Broadway this summer, and I have vowed to go see him. Someone asked me if I'd be taking my kids. Um, hell no, I'm not! Does schlepping three small kids through New York City sound like a vacation to you? I want to stay somewhere nice and sleep as late as I want. I want to catch up with old friends and drink wine and eat wonderful things and just shake out the kinks for one measly long weekend. I even like that it's not until June. It gives me somewhere to go in my mind, when checking out mentally is the only reasonable option. I like the whole idea of looking forward to something. Of looking forward.

Seeker

Most of the folks I follow on twitter are fellow autism parents (and yes, okay, celebrities and celebrity gossipers). Anyway, there has been a lot of talk lately about how some of them are so, so grateful that Christmas is over, because they can finally take everything down and peel their spectrum kid off the ceiling. I don't take my decorations down until January 1st, and it's always a mix of relief that my house is back to normal and post-Christmas what-do-we-have-to-look-forward-to gloom. Jonah totally rocked this Christmas, and was thrilled by every little bit. He insisted we take the long way home every day during the season, and pointed at every (EVERY) decorated house, squealing and screaming, "Yikes!" (note: this is a hold-over from Halloween decorations, but the point is... enthusiasm). Lights, carols, loud toys from Santa, parties and busy schedules- he was into all of it. Because, in the world of autism, we have this one advantage. Jonah is a seeker.

Like most kids on the spectrum, Jonah has sensory processing disorder, and "seeker" refers to sensory-seeking, as opposed to sensory-avoiding. For avoiders, Christmas is a sensory nightmare. Everything is too loud, too bright, too much. As a parent of two neurotypical children, and being a full-blown Christmas wackadoo myself, having to avoid Christmas would certainly suck. And this is how it is. Yes, my kid is autistic, but I'm SO grateful he's a seeker. You sort through the bullshit and find the little gems to be grateful for. Times I'm less grateful for his seeking might include when he's grinding his skull against mine, or grinding his teeth down to dust, or launching himself at me or his sisters, but I can put up twinkle lights, so I'll take it.

Segue: Okay, so I keep calling Jonah a seeker, right? I've decided I'm going to write the next Harry Potter/Twilight-type series of young adult books, and the hero will be a Seeker. It will turn out that autism is actually one step further up the evolutionary ladder, or a mutation that confers awesome powers in an X-men sort of way. Seriously, it's not so far-fetched. High-functioning autistics are sometimes uniquely gifted at problem solving or code breaking (or anything, really- many savants are autistic). My own seeker taught himself to read (hyperlexia) is fairly masterful for his age at puzzles and patterns, and Lord knows what else he can do or understand. I CANNOT WAIT for his verbal communication to catch up, so I can get a better grip on what's going on in there. Anyway, the Seeker will be a blonde scruffy-haired teenager (he still loathes haircuts, evidently) who basically kicks ass and solves the world's problems, or whatever.

Okay, I don't have the details worked out yet, but what do you think? I'm thinking multi-book deal, movie deal, and inevitable (sensory-friendly) theme park. I mean, I'm not living in my car like JK Rowling, but I could use some extra cash. Honestly, the middle-class-to-riches story just doesn't get enough cred.
Especially when our (expensive) insurance does not cover the therapies our special-needs kids deserve.

ANYWAY... I hope that you all found a way to have the happiest holiday possible, and that you found joy in just being with each other. Here's to 2012 and getting back to school and highly structured environments!