He Is Our Reason

The first time we nearly lost Jonah, he was five weeks old. I wrote about that here.  He made it through that first illness and we later learned he has asthma, but we are two parents who are healthcare providers, we are super vigilant, and we work really hard to keep him as well as we can. But. Jonah is also autistic. He still has sensory processing issues that mean sometimes he does not experience distress like others and (more importantly) does not report symptoms to us. So, after years of doing well and living life, in 2017, when he was 9 years old, it happened again.

It was just like the last time. It was a mild cold. One of us caught it at school or work and shared it around the house, no big deal. It's happened dozens of times. We are careful. We stay on top of Jonah's prescribed medications, and monitor him carefully, but we don't put him in a bubble or treat him like he's made of glass. It was a typical Saturday, and we were all moving through the house, getting chores out of the way. Corbin was mowing. I was doing laundry. Jonah was sitting on the sofa playing a game on his kindle, a few sniffles, no problems. The next time I walked past him, he had put his device down, he was sitting oddly, and he was breathing with his mouth open slightly. I just knew right away.

Things are hard right now. When Covid-19 first showed up in our country, there was a sense of solidarity, but now there is such division. People are facing real financial hardships, they are missing their friends, or they just want to get back to the things that make life feel recognizable and safe. I couldn't understand more. Truly. I am a nurse, and I know that the chances of a poor outcome for young children is pretty low. I am a numbers/science/data person, so I'm trying really hard to focus on that.

The trouble is, twice now, I've been the mom in the back of the ambulance with her boy, praying and panicking and bargaining and begging and more terrified than words can ever say. I just don't know what this virus would do to Jonah, not for certain. If his lungs shut down- you have to have air to live, that's it. The window is cruelly small. And Jonah goes from okay to not okay in a snap, and silently.

I see a lot of folks posting on social media about "living free" or "refusing to live in fear" along with group photos of parties or girl weekends or whatnot.  A couple things: A) I'm a well-educated nurse and I was a microbiologist before that, so I'm not sure that following state and local health mandates based on current health data is such a bad idea, and  B) You bet your ass I'm afraid of the back of that ambulance. What a blessing if that's not a memory you have to relive through all of this mess. Like you, my children mean everything to me, and Jonah, my sonshine, he is just much more at risk. And he's not alone. So many of us have high risk children to protect, or parents for that matter. (And no, heart attacks and car accidents do not factor into this argument, so just shush with that.)

So, before we go around calling our mask-compliant neighbors sheep or socialists or whatever- maybe take a moment to pause, give some grace, and consider that some of us are fighting different battles here. I know all too well that lots of people think we are nuts for keeping to our home since March 13th. Our own kids are frustrated and annoyed because they see their peers out with their parents' consent. But the girls are old enough to remember March of 2017 well, and they love their brother fiercely, as we do.

If you're struggling to make sense of ever-changing guidelines, and growing weary of making all of these sacrifices as the months go by, he is our reason.

It must be nice

Ugh.  Can someone tell me why we're still talking about "the mommy wars"? Past generations of women have worked damn hard to provide us with these choices, and we thank them by tearing each other down, no matter what choice we make.  It's a ridiculous waste of energy, and it's well past time for us to start supporting each other. 

Every now and then, I see these little charts about how much a SAHM is worth, as though our value could only be measured with money.  I am lucky-lucky-lucky to have had this choice to begin with.  I really do understand that.  If I were a single parent, or if my husband didn't draw a salary that can support five people, I wouldn't have had a choice, so I am grateful beyond measure.  When Corbin and I decided to start a family, we agreed that I would stay home with our children until they were all in school full time, because we thought that was best for OUR family.

"It must be nice."

 Lord, how many times have I heard that? You know what?  Many times, in lots of ways, it is nice.  I wouldn't give up the eight years I've spent at home with my children for anything, even if there were days I considered putting them in a box at the curb with a sign: Free to a good home. Yes, it's "nice", because as it turned out, I had three children in two and a half years, two of whom are twins, one of whom has special needs. For years, we've had our three kids in three different schools with different hours, various private therapies for Jonah, and several activities for each of our girls, and I'm not sure how we could have handled things without a parent at home. I don't doubt for a moment that I made the right choice, though it wasn't as easy as you might think.  Let's be honest, sometimes it's "nice", and sometimes its awful.

When our twins were newborn and Elena was two, and we were running on no sleep whatsoever, Corbin and I had some of the biggest arguments of our marriage.  And here it is: Although my children are a joy and a blessing to me every day, and I love them more than any words could express, at that time, I felt like I was drowning. I was nursing the twins, potty training Elena, and was just consumed every single minute of every day. I desperately envied Corbin's ability to leave for work.  It's a break from this, I argued, and he looked at me like I was completely insane.  And the truth is, we were both right. 

I often hear working mothers say that they have to work 40+ hours, then come home and do everything we SAHMs do as well.  Pardon me, but that's some bullshit.  Are your children in suspended animation while you work your shift? Nope. Unless you are fortunate enough to have a trusted family member care for your children for free, you are paying a premium for someone else to do it.  It may cost more than your mortgage or rent, and though the cost is crushing, you pay it because you are putting the needs of your children above all else. 

Even though I don't envy you the heartbreak of leaving your kids in the morning, or the work waiting for you every day when you get home, I do envy adult conversation and collaboration with colleagues, satisfaction in work outside of your family life, wearing clothes without baby spit-up on both shoulders, etc. Maybe you imagine me at home, days filled with giggles and PB&J and sunshine, but I think we both know better than that. I admire the sacrifice you're making, and I hope you can understand the one I've made.  In my career, I've worked in research labs with radioactive and/or toxic chemicals, organized and prepared labs for hundreds of undergraduates per semester at UT, and worked the oncology unit as a nurse.  I say without hesitation, staying home is both my greatest joy and achievement and the hardest thing I've ever done. 

And there I go- trying to defend my choice.  The bottom line is that there is hard work and sacrifice waiting for us, no matter what we choose, and we should be celebrating each other. I honestly believe that there are admirable aspects of each choice, and we could be better mothers, sisters, friends, and women, if we embrace each other in all our diversity.

Autism Speaks?

Since Jonah's autism diagnosis at age 2, in 2010, we have looked to the organization Autism Speaks for help and inspiration.  We formed our team, Team Wonderboy, walked the walk, and have raised thousands of dollars for them.  I have supported them because of their dedication to real science and research, their refusal to give in to the hocus-pocus nonsense that is the anti-vaccine movement.  I have supported them because of their inclusion of Aspie hero John Elder Robison on their board.  His book Look Me In The Eye was the first I read (with one eye open, hiding under the covers), when I was terrified of the diagnosis I knew was coming for my son, and it blew my mind wide open about what was possible for my child. Last week, after a hugely controversial statement by Autism Speaks co-founder Suzanne Wright was released, Mr. Robison resigned. You can read his statement here.

The problem, in a nutshell, is this:

"These families are not living.
They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.
This is autism."

Nope.

Let me be clear: I fully realize that, in the scope of autism spectrum disorders,  we have been extremely fortunate.  Our child is considered to be "high functioning", attends kindergarten in a mainstream class with his twin sister, is bright and is expected to do well academically.  He has some behavioral issues, some delays with speech and fine/gross motor skills, but has responded well to all therapies we've tried so far, and is working his little heart out to close those gaps.  I certainly worry about him, but fear and despair are not a part of our daily life.  At all.  And while I know that there are families facing much greater challenges because of ASD, there are quite a lot of families like mine (not to mention autistic adults) who find this kind of fear mongering offensive, inappropriate, and counter-productive.  What can we hope to accomplish with such negativity?

While I'm deeply curious to find out (hopefully in my lifetime) what has caused this increase in diagnoses, I'm glad that there is also significant focus on therapies and resources.  Given my background in the sciences, my faith is in quality research to provide the answers we need.  That said, I'm not at all sure I want to "cure" my son of anything.  I worry that the difficulties that make our daily life a little more challenging might be a cause of some future unhappiness for Jonah, but I can't imagine wanting to change such an essential part of who he is.  Because he is extraordinary. 

Autism Speaks is the most widely recognized organization for autism spectrum disorders.  They have funded (and continue to fund) important, desperately needed studies, they provide resources for affected families, and without a doubt, autism awareness has increased significantly due to their efforts.  For my part, I'm going to hang on to my fundraising dollars for now, and wait it out.  I'd like to give them the chance to amend their statement, to step back and realize that they have alienated so many of their supporters, and that we need a positive focus, moving forward.  Other charitable organizations have faced similar controversy (Komen comes to mind), so I hesitate to throw out the baby with the bathwater.  If you have donated money to our team, to Autism Speaks, I feel confident that our money did not go to waste.  One statement cannot discount all the good that has been done.  We've had a very positive relationship with the local Autism Speaks chapter, with the walks, and as a representative family for Autism Awareness Month in our town, and I'm hopeful that we can continue that relationship in the future.  We'll just have to see what's going to be best for us, moving forward, and you can be sure that I'll keep you posted.

Regardless, our spectacular boy remains, as ever, Captain of Team Wonderboy.

His Life in Pictures

As you know, Jonah is enamored of technology of any kind, and Apple products in particular.  We are torn between encouraging and limiting his enthusiasm, because, you know, a full scholarship to MIT might come in handy, but we don't want his face in a screen all day.   Several months ago, he discovered the camera function on my phone, which meant that he was always running around with it, snapping pictures, and using up all of my available space.  I just sighed and set about deleting the hundreds of photos he had taken, before some small part of my brain said, "Wait.  Are you really going to miss this chance to see what he sees?  How he sees?" And then I started to really look at what he chose to photograph, and how, and it wasn't random at all.  He carefully selected what he wanted, and took time arranging it just so.  Please note that these were taken by a four-year-old on my crappy iphone 3, so the quality isn't terrific- the content is what I'm interested in.
Several common themes emerged:
Texture:

  Light:

Fingers and Toes:

 

 

Technology:

Motion (and these were done deliberately, often taking several trials):

Object Stills:

Noticeably absent are photos of people, of faces.  Of the hundreds of pictures he has taken, only a very few include people.  And who knows what any of this means?  Does he see in pictures, as Temple Grandin explained, and photography is a way to slow the stream of images he sees?  Is the camera a way to distance himself socially?  Whatever Jonah's reason for taking these pictures may be, I'm so grateful for the glimpse inside of his quick and quirky mind.  He can't always tell me what he's thinking, but maybe he can show me. 

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.