Planting the Garden

 Dear Ellie and Maya,

Let's start now from where I left off 8 years ago: with the birth of you, Maya, and the two years we remained with Grandma and Pop Pop at their Florida house, and the place I grew up.  How I remember those two years tends to be like this:

Or this:

Or this:

Or this:

In other words, lots of happy quiet moments with smiles and joy and good camera resolution.  But then I look at the other pictures from that time and realize that it was often like this:

Or this:

Or this:

Life moving by in a frantic, messy, slovenly blur while surviving on toddler scraps.  There were some challenges to be sure, and not just the usual ones related to new parenthood.  The wounds left by prematurity were not yet over.  But we can get to those later.

Aside from those challenges, I can honestly say that this felt almost like the moment my life began.  That whole schtick in my first letter about parenthood "turning up fresh, vast new tracts of my mind that I never knew existed" wasn't just a bunch of pretty words.  It ended up being truer than I could have imagined.  Its hard to understand what parenthood does to your perception of joy and purpose until you've experienced it.  I think most people who haven't been through it look at parenthood and think that they'll feel the same way they did before they had kids, except with less time to enjoy their life.  In reality, parenthood is like a wet-stone.  It sharpens every part of you.  Your emotions, your enjoyment of simple things, your ambitions.  In my 20's before you two came along, each day felt dull and bland.  If my life were likened to food, it would be as though every meal was without salt or spice.  I had all the time in the world to apply myself to goals, but never felt like I had a purpose or reason to.  Now I did, and everything in life came with rich flavor.  Between caring for two kids in diapers (one with special needs) and working two jobs, I'd never had less time, but had never achieved more or experienced more satisfaction with my life.

On the subject of that simple happiness, things I once would have thought were uncomfortable or tedious became moments of quiet beauty.  Pacing the catwalk at night by moonlight at 2 A.M. while feeding you, Maya.  Or Ellie, taking you on our daily hiking adventures through the woods and along the canals.  Or watching the two of you raid Grandma and Pop Pop's garden like mischievous little bunnies.

Here we are Ellie provisioning at the Winged Bean vine before

one of our hiking adventures.

One of our hour long treks out in the fields and 

woods behind South Fork

Mom takes you on some backpack adventures of her own.

The great raid

You tried to escape with your ill gotten

gains, but Dixie Dog caught you!

One of those other simple but unexpected joys was observing your personalities unfold as we played, as you experimented with new food, as you bounced around in your beds while you were meant to be napping.  When I was younger, in my head, I always imagined that children under 4 were more or less like blank sheets of paper that you filled with information.  After you came along Maya, it became ever more clear to me that so much of who we are is set from the very beginning.  From the moment Ellie was born she was bombastic and irrepressible.  She was always kicking or moving or climbing and every second and every day, she was demanding of everyone's attention.  She probably spent 3/4ths of her baby and toddler years in someone's arms not just because there were plenty of adult arms around to do it, but because she demanded it.  We never had to worry what she was up to because she was perpetually narrating her life to us wherever she were.  And when she had a complaint, it was registered with us loudly.

But Maya, you, on the other hand, were the complete opposite.  From the very beginning, you were quiet, contemplative, and observant.  When you made any kind of vocalization, it was melodic, gentle, and sing-songy (it often still is).  Ellie crying sounded like a warthog.  When you cried, it sounded like a chirping little baby bird singing to its mother.  After having a first child that your mother and I could easily echo locate at all times as though we were dolphins, your quiet disposition was disconcerting.  You were easy to lose track of.  Whenever we took the both of you someplace in the car, Ellie would chatter in an endless stream of conscience.  Meanwhile, you wouldn't say a single word.  Once a week, I would panic and think that somehow I might have forgotten you at home, and jerk around in my seat to verify that you were there.  And you always were, gazing quietly out the window as the world passed.

As a side note, I recall once writing in my letters that I thought that you, Ellie, were the cutest baby in the world.  I'm sorry to say that by objective measures of scientific measurement, Maya probably usurped you.  She had ovary-exploding levels of cuteness:

In the years to come Maya, long after you were out of the baby and toddler years, everyone would think you were much younger than you really were.  I know if you ever read this as a teenager you'll hate it, but your mother and I nick named you "perma-baby", because you would continue to have cute baby like characteristics for years and years.  Even during the time you spent at Crystal Lake Elementary School, the adults and older kids gave you the nickname "Baby Shark" and swooned over you.

The irony of your personality is that despite being quiet and observant and cute, you would turn into a little Kamikaze pilot of physicality, throwing yourself into play fighting and any physical activity you happened to be a part of.  You became a little pint size warrior.  Ellie on the other hand--- despite all of her bombasticity--- would become the diplomat and the peacemaker.

A lot of these manifestations of your personalities of course would come later, but as I said, it was all very conspicuous early on in their unrefined forms.  Part of the joy of these early years was watching these core essences of who you were evolve and grow, day by day.

Maya with Nana

Ellie, participating in the harvest

The days right after Maya was born.  We stayed with Nana for

awhile before moving back to the Smith house.

Learning practical skills... sorta.

A cliche tradition that would last a long time: the grandkids 

making baked goods with Grandma.

Here you are at the landing pad of many a future summer trips:

Auntie Danielle and Uncle Zack's house 

And of course, I have to mention also that amid this early time in your lives a third personality was added to the mix as well: your cousin Marianna, who was born a few months after Maya.

All of the Smith grandkids (so far) together

for the first time.

For the most part all was well.  After years of struggling to start a family, it felt like we were finally settling in to the life that we'd always fought so hard for.  And yes, there were moments of frustration.  Ellie, your endless doctors appointments.  Maya, your extreme reluctance to eat and the mystery of why your speech was delayed.  But your mother and I never once at any moment regretted that this was what we'd chosen.  I never missed what my life was like before you two came.  Even with the residual NICU health issues, rather than making me sorrowful or wistful for an easier version of parenthood, it put in me a determination to want to protect what we now had.  Having you made me want to be better.

So at exactly the moment I had the least amount of time in my entire life (right after you were born, Maya), I decided to do something entirely unexpected with my life: I started making computer software.  It was a thing I had always wanted to do (and failed at repeatedly), and Nana had proven that there were a lot of jobs in the field that were richly rewarding, both financially and with great insurance (which to me, was the golden ticket for dealing with your health issues, Ellie).

The problem?  I was already working with aquariums, teaching night classes, and caring for you guys.  I also had almost no idea how to actually program computers or make software.  And we certainly didn't have the money for me to go back to college, as would have been the appropriate path.  I look back now and it seems like a ridiculous thing to try to do on the surface, but it makes sense in one particular way.  My 20's had been defined by trying and failing at just about everything.  I started businesses which limped along, I got a college degree that wouldn't land me a career, I took jobs that were never destined to go anywhere.  I started to feel like I just wasn't the kind of person who was meant to truly succeed at anything.  But then you two came, and I was finally succeeding at something: fatherhood.  So maybe I could succeed at something else, as well.

So at any free moment when I wasn't working or caring for you two, I was teaching myself how to program computers.  All of my normal hours were accounted for with work or childcare or chores, so I feverishly woke up at 4 in the morning to work on it, clacked away at the keyboard when you were down for naps, wrote code on my phone while I was out at work or during our hikes, or stayed up late to work until I nearly fell asleep at the keyboard.  It was probably the busiest time of my life, and I don't recall taking a single weekend off for years.  I remember many an early morning or late night glued to my 3 monitors, shuffling around code and collaborating with developers around the world in this very spot:

Sometimes I brought you guys along for the journey as well.

                                     

Its important to mention that I had one key, essential ingredient that made this possible: 3 grandparents, 2 dedicated parents, and lots of other family and friends who pitched in with you guys!  And perhaps most important, your mother was willing to support me in my hair brained scheme.  This was the beginning of a journey that would eventually lead us to our home now in North Carolina.

I remember the thing that kept me going was the thought: "even if this doesn't amount to anything for me, at least I can teach my girls one day."  About a year and a half in, I almost even quit.

One day when we were playing in the pool your mother and I noticed something odd about you, Ellie.  It's a thing we had vaguely noticed before, but I think we tried to explain away until it was too obvious.  Your right eye was beginning to conspicuously bulge from its socket.  We took you to the doctor, who then ordered imaging.  At the hospital, they gave you general anesthesia, you went to sleep, and a very large man carried your limp little body away through two large double doors to be imaged.  For some reason, all I could see at that moment was this again:

 

It had been over 2 years since you left the NICU, and while we had drifted more and more toward a life of normalcy, those old feelings of fear and grief had never quite left me.  For all the happy moments we had, there was always a quiet, sinister whisper in the back of my head.  A feeling that we were only allowed to have this happiness so that the grief would be that much worse when you were taken away from us.  I was always wondering around which corner that thing would come, and in what form.  And so when we found a tumor wedged between your skull and your eye, I thought: "Of course, so this is how she's taken away from us."

At first, it wasn't clear what exactly it was, or how it got there.  Whatever it was, it hadn't been there before you left the NICU.  But once again, back to that frantic mental space we went, scouring through medical documents, trying to discern what it was and how it might hurt you.  As it turns out, it was a very rare tumor called a "lymphatic malformation of the orbit."  On the one hand, we were relieved to know that it was not cancerous.  Unfortunately, it was still dangerous, and would grow faster than your head, meaning you would likely lose your right eye or at least vision, suffer from seizures, and the tumor would gradually wear away at your skull.  Its common that children with these malformations to have significantly limited childhoods.  We went to numerous doctors, who told us that because the condition was so rare, there was no treatment for it.

This wasn't an answer we were willing to accept.

Like I did back in the NICU, I scoured through medical white papers and followed the citation trail to leaders in the field.  After a few weeks of searching, I discovered that there was one man, Dr. William Shiels, who pioneered a unique, non-invasive treatment for the condition.  Under general anesthesia, he used tiny needles the size of mosquito proboscis to enter above and below the eye, extract fluid from the various parts of the tumor, and then inject a chemo agent.  I was ecstatic to discover there was a solution!  Unfortunately, I was heartbroken when I discovered the surgeon's recent obituary.  The man who had pioneered the treatment just a few short years ago had died 6 months prior to us discovering your tumor.  After some more digging, however, it turns out he had an understudy who was still continuing the treatment: Dr. Murakami.  After we spoke with him, we were told you were a great candidate for the procedure.  So off to Ohio we went, to visit Nationwide Children's Hospital.

Despite the occasion, the visit to the sprawling hospital complex was actually a bit of an adventure.  We stayed at the Ronald McDonald's house--- with its many fun-rooms loaded with toys and giant stuffed animals--- and the hospital itself was scenic and beautiful.  On our free time before and after the procedure, we packed you into your backpack and we explored the ins and outs of the hospital in search of secret toilets.

Still, this was not a vacation.  You were neither a fan of being poked by more needles nor a fan of getting put under.  It was difficult to watch.  You'd already been put through so much already.  Getting an IV in you or blood work done was a herculean task.  Every time you saw a needle come out, you'd turn into the incredible hulk.

Ellie, pre-op

 

Ellie post op

In the end, you responded very well to the treatment, even though it made you look like you'd been socked in the eye.  Also, the treatment was not a permanent solution.  It could only shrink the tumor for a time, and so we would be returning many times to shrink it as it continued to try to grow.  Still, it was a small price to pay for a normal childhood.  Those old feelings of fear and grief began to subside once again, and we slid back into a sense of normalcy in life.

Our first Halloween, all together

Maya and Pop Pop quietly observe 

the world together

Ellie, with uncle Zack

Ellie, with uncle Shane

While this was invisible to the two of you, in the 4 years we were at Grandma and Grandpa's home, your mother and I were paying down all of the debts we'd incurred in medical bills and the fertility treatments of the past.  We'd even sold our old house early on to make sure that we were out from under any unnecessary expenses while you, Ellie, were at a medically vulnerable (and expensive) time.  We never wanted to be in a position where we couldn't afford all of your various treatments.

4 years into staying with Grandma and Grandpa, however, things were looking up for us.  Your mother's career was doing well and I was earning more working with your uncle on aquariums.  I was even making some money on a software business while I was learning how to program.  So finally, after working hard and living like monks, we were debt free and ready to graduate to the next phase of our family: getting out on our own.

In a way, the time we spent with Grandma and Grandpa reminds me a lot of the rhythm of the seasons in your Grandmother's garden.  Every grow season, before the delicious bell peppers and fresh kale or tomatoes, there comes the hard work of preparing the vegetable beds and planting the seeds.  Likewise, we were preparing the soil and planting the seeds of a happy family.  And if we had enjoyed the prior 4 years, the next 3 years that would follow on Moseley Street would be the beginning of the "Magic and Mystery" years.  A time when you'd commune with Tomtens deep in the forest, hunt for buried treasure, expand our search from "secret toilets" to "secret doors", ambush Santa Claus, and more.  But I'll save that for another day.

I love you two, and I'll write to you again soon.

Grandma's Garden