5 for the Win

When you are a couple expecting your first baby you spend a lot of time imagining what life as a family is going to look like.  If you know the sex of the baby, those images are even crisper as you tune them to activities you know you’ll be doing down the road.  For couples having a baby boy they might imagine them playing sports, their first little league team, playing super heroes in the backyard, even going to their first dance, asking their first girl out for the very first time.  For couples having a baby girl they might imagine them playing with Barbie dolls, going to dance class, wearing tutus, and getting asked out by their very first boy for the very first time.  I know this sounds very gender stereotypical, but that’s often what day dreams look like, since we don’t know our child yet we can only guess the milestones that will lay ahead of them in their lives.  But when we found out we were pregnant with Aleck we didn’t want to know the sex of our, hopefully, future child.  Having lost our last pregnancy so late in the game, we decided to protect ourselves from those types of day dreams, from using our imagination so much.  We’d been crushed and heartbroken before and wanted to save ourselves from as much pain as we possibly could.  But 5 years and 1 day ago today we discovered a very different type of pain.

While I was pregnant with Aleck I ran a Groupon for my photography, when Groupon was still popular, selling out of the 300 sessions I offered within hours of the Groupon running.  I then spent the next 6 months working my tail off, running all over the city and suburbs to capture families of all shapes and sizes.  There was so much work to be done, who had time to even imagine what this baby growing inside of me would be like.  That certainly made the pregnancy a lot easier and less stressful on both of us.  At the end of everyday I’d collapse on our couch, sending Craig out for Italian Beef sandwiches, falling asleep, and starting the long day of shooting all over again.  I was editing a session for a family, had disks burnt and thank you notes to be written in the hospital, the day I was scheduled to go in for my c-section.  Aleck was breach, we knew that, and because of our late term loss we wanted to get him out of me as soon as we possibly could.  We didn’t want to risk loosing another baby.  Almost done with baby Ezra’s pictures Craig was barking at me to shut down the computer and grab my stuff so we could head to the hospital.  “We are having a baby, stop working and let’s go.”  Holding hands in the car on the way downtown we didn’t say much.  Totally terrified of what lay ahead, even scared of walking back into Prentice Hospital together, barely a year and half after our trauma there, we were holding our breath.

In the room, all gowned up and ready to go, Craig was playing with the little baby t-shirts they had laying around.  Our family, slowly making their way to the scene, wishing us luck as they wheeled us away for the big delivery.  Epidural in, I was sufficiently drugged up and as ready as I could possibly be.  I couldn’t say a word, I could barely formulate a thought, as they cut me open to deliver Aleck into this world.  I held my breath.  Was the baby out?  Was the baby alive?  10 fingers? 10 toes?  It was a boy.  OK.  I can do boy.  His arms are short.  Huh?  His arms are short.  What does that mean?  Craig holding him, bringing him to my face while the curtain was still up protecting me from seeing my own insides, I felt like I might vomit.  Craig is beaming, grinning, gently cradling this tiny creature, but his arms are short.  What does that mean?  Craig is putting it on Facebook, he’s proudly announcing the birth of our Aleck Chaim (Chaim for life, because we have a breathing baby boy), but what’s wrong with him?  It was all I could think about.  His arms are short.  What’s wrong with him?  What does that mean?  Is he going to live?  Craig, don’t post anything!  We don’t know what’s going on! It’s too late, he’s already put it out there.  Oh god.  Is he OK?  Is he going to be OK?  His arms are short, what does that mean?  What’s going on?

The next thing I remember is being in our room, where we’d be sleeping.  Aleck is there with us, I’m trying to nurse, the Blackhawks game is on, my sister is parading Aleck around the room singing their unofficial anthem.  My mother in law was there, my brother in law was there, my sister was there, my parents were there, then everyone was gone.  A nurse came by to take him for blood tests, hearing tests, routine newborn baby testing.  An hour later he was still gone.  What’s happening?  Where is our baby?  Is everything ok?  His arms are short, does that mean anything?  Two hours later we still didn’t have Aleck back and we didn’t have any answers.  Finally a resident stumbles into our room explaining that Aleck is in the NICU, but she can’t tell us why.  She babbles for about 20 minutes, but she said absolutely nothing.  We have no idea what’s going on.  It’s almost midnight, I fall asleep.  Four hours later I’m dumped out of bed by a 5’2 asian nurse insisting I have to go down to the NICU to feed Aleck?  WTF?  I thought I could sleep.  I thought I just had major surgery.  I thought I could sleep.  She wheels me down and I go and try to feed him, try to burp him, try to hold him.  He’s hooked up to all of these monitors, everything is so confusing.

Barely 4 hours later I wake up, Craig is gone, and a man dressed in a grey suit holding his Wall Street Journal under one arm and his Starbucks in the other walks into my room.  He barely introduces himself, I don’t know his name.  He’s a pediatrician and he’s here to tell me that my son will be disabled for life.  “Have you seen my son,” I ask.  No.  But he’s got a condition and… “HAVE YOU SEEN MY SON”, I ask again a little louder.  No.  He walks out the door.  Craig is still gone, I’m all alone in my room.  I call my mom.  She’s supposed to teach a class and then come to the hospital to be with us.  She answers her phone, it’s 8:30am.  “Mommy, there’s something wrong with Aleck, there’s something wrong with my son.  Can you come?  Can you come here please?!?”  My eyes well with tears, my throat is tight, I’m on the verge of hysterics.  At that moment all of my dreams feel shattered once again, into a million little pieces, obliterated and set on fire.  A parade of doctors in and out of my room that day, “can’t be good if it has the word ‘gryp’ in the middle, right?”.  Oh yeah, that’s hilarious.  He’ll never walk, he’ll never use his arms.  They might have said “probably never” or “most likely won’t” or “most likely can’t”.  Whatever combination of constant, vowels, verbs, nouns, adjectives, prepositions, contractions, it didn’t matter.  The message was delivered loud and clear.  The life that lay ahed of us was going to be very different.  It was time to shut down our dreams. It was time to close our eyes and stop thinking about the future.

When Aleck was born we were relieved he was breathing, but when we got his diagnosis we were forced to mourn for the child we didn’t have.  We had to grieve for the news shoved down our throats, and put our blinders on to the rest of the world.  It was time to focus on Aleck’s needs, at this point one hour at a time.  Later on, one day at a time, and now, here we are, able to look ahead months at a time.  Aleck’s quality of life is a milkyway galaxy away from where we thought it would be.  Billions of lightyears ahead of this boy who was never going to walk, never use his arms.  This boy spent his 5th birthday in Kohl’s Children’s Museum, playing with the exhibits without any help from his mommy or daddy, no help from his grandma or pappa.  He did what we thought, what we were told was unthinkable 5 years ago today.  Running around that museum just like any other kid, laughing, playing with his friends, trying to squeeze in as many “last things” as he put it, before the museum closed.

And now, as Craig and I are trying to take our blinders off, trying to stop living life in the short term and instead letting ourselves see the road ahead, it’s a bit of a struggle.  To survive we’ve had to block out so much from our way of thinking that it’s quite an adjustment to be planning for his future.  It’s better than we ever could have imagined, but god are we tired.  God have we been beaten and broken.  Our future is full of potential, Aleck’s future is full of possibility, but dear god could we use a break, an uptick, some smooth sailing.  Right now the book of life is still open in Jewish tradition, this week between Rosh Hashanah and Yom Kippur, and I can feel the tension in the air.  Will this be the year that things keep swinging up for us?  Like the Chicago Cubs, will be be able to put a big “W” in our window?  I know Alecks wants to hang that white and blue flag in our condo, despite living in a White Sox Home.  I know I want to be able to put a few check marks into our own “Win” column and even get the chance to enjoy it.  C’mon God, universe, world, karma, let us wave our “W” and savor the victory of 5 for as long as we possibly can.



One Reply to “5 for the Win”

  1. I’m so overcome with emotion as I read Aleck’s story. You captured all your emotions quite frankly. We wish you happiness & hope for the Persin family.

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