From Despair to Acceptance to Elation

IMG_3795This is a deeply personal story involving the most precious things in my life – my wife Renee and 18-month old son Jack.  Renee and I have been considering having another child, but at our ages the risks of complications and child health issues are increased, so we have been actively seeking out as much pre-pregnancy testing as possible.  One of the tests that was recommended by our fertility doctor was the Spinal Muscular Atrophy (SMA) carrier test through a simple, and relatively inexpensive ($99) at-home saliva swab kit, and many insurance carriers will cover some of the cost.  We’d never heard of the test or the disease.  It’s important you read about this horrific genetic disease before progressing, but a few key points:

  • SMA is a disease where certain nerves in the brain and spinal cord die, impairing a person’s ability to move.  In the majority of cases (Types 0, I, II) SMA manifests in infants and toddlers before the age of 2 and in most of these cases, death is the result.  The remaining cases (Types III, IV) result in various degrading movement levels and onset ages, but the majority of cases result in loss of independent walking capability sometime between 3 and 30 years of age.
  • If you are a carrier of the disease, you cannot contract the disease.  Renee and I were being tested as possible carriers, as given our ages and no physical symptoms, it is obvious we do not have the actual SMA disease.
  • Approximately 1 in 35 caucasians (where the disease is most prevalent) are carriers of the disease, so the likelihood of having two parents as carriers is roughly 1 in 1225.  And there must be two carriers of the disease to produce offspring that contract it.
  • If both parents are carriers, there is a 25% chance that the child will be born with the disease, and 70% of those children will die before their 2nd birthday.  The remaining 30% have a wide range of prognoses and outcomes, ranging from inability to walk sometime between 3 and 20 years old to death.  There is no outcome, if the disease is contracted, where the disease is dormant forever.  As I said, horrific.
  • There is no active testing protocol in place today for parents considering children or for the fetus during pregnancy.  This is shocking to me given the combination of contraction probabilities and severe outcomes if contraction occurs.  Because of this, the vast majority of parents do not know if they are carriers and the contraction of the disease in children or adolescents is only known once physical symptoms occur, which can be as early as birth and as late as adult onset (early 20’s).  Insidious.

Because of the lack of testing, parents and their children know nothing of this disease until symptoms show in the child.  But, our story is different.  Renee was tested early in January and received a positive test as a carrier of SMA, which we didn’t think much of outside of being a fluke.  Given her positive test, I needed to ensure I was not a carrier in order to guarantee absence of the disease in Jack and any future children.  However, on Friday, January 18, I received a positive test as a carrier of SMA, and our immediate thought was not about how does this impact our desire to have another child, but rather what does this mean for our 18-month old son Jack?

This moment began the most harrowing week of our lives as we waited for the genetic testing results from Jack’s blood draw.  An emotional journey through despair, intense and depressing research, mental preparation for the worst outcomes and finally, a focus on how to comprehend that our beautiful, strong son, who has zero symptoms of this debilitating disease, could degrade in physical strength and be in a wheelchair at any moment.  Or, it could take years to manifest itself.  It was this uncertainty – knowing if the disease was present, there’s no way to predict when symptoms would show or their severity – that we just couldn’t get our heads around.

Then we thought, should we even get the results?  How would knowing a positive test affect our interactions with Jack?  Would we treat him differently?  Could we as parents deal with the waiting, the imminent result?  We ultimately determined that knowledge was power, that a positive test would enable us to do everything in our power – time, energy and finances – to help our son.  And certainly a negative test would give us peace of mind, a selfish, but ultimately another important reason for us to know the results.

We cried ourselves to sleep for 10 nights, waiting.  Then, on Monday, January 29 our prayers were answered with a negative test for Jack.

Given our experience, and our dismay at the lack of proactive testing, Renee and I are going to at a minimum make a financial contribution and possibly get involved more deeply with Families with SMA, the non-profit association dedicated to research, funding and advocacy related to SMA.  We’ve been amazed over the past week at how many people have said, “yeah, I have a friend who’s child died from SMA” just within our personal networks.  It doesn’t have to be that way.  And we’d like to participate in the advocacy for a broader testing protocol.

Pondering Mortality

I celebrated my 43rd birthday this week, but this one was distinctly different – it was my first birthday as a Dad, and it really had me reflecting on the past year and particularly on the future in a very different way than past years.  My typical birthday routine is to enjoy a phenomenal cigar and an even more phenomenal glass of scotch while thinking about the past year and what I hope to achieve in the next year.  While the cigar, scotch and prior year reflections followed a similar routine, my thoughts, objectives and priorities for the future could not be more changed.  There were two key differences this year:

First, its not just about me and what I want to accomplish or what I want to do.  This is probably obvious to you who are parents, the birth of your child and the immediate and complete priority shift and sense of responsibility for their happiness and well-being become the leading priority in life.  But what really struck me and had me reeling (read: panic) a bit was the second stream of contemplation – the realization of my own age and it’s conflict with the longing I have to know my child into his old age.  To experience his adolescence, help him through heartbreak, watch him become the man he chooses to become, rejoice in his marriage and see his world change, just as mine did, when his first child is born and I become a Grandpa.  But wait!  I’m 43.  That means 60 at high school graduation.  What if he marries or decides to have children “late” in life like me.  That’s 86 at first child.  Ugh, you can see how this began to quickly spiral out of control as I began to hyperventilate with the cigar and gulp 19 year old scotch.

Then it hit me.  Quit being an engineer, trying to plan and predict your life and every outcome for those around you.  While we like to avoid thinking about it, let’s face it, there are dozens of causes, accidental or otherwise, for us to “go” at any moment.  Accidental death took my own father when he was just 36 years old (I was 9).  There is no better defense of “live in the moment” than when talking about loving and nurturing your children and breathing in all of the experiences, every day, that they bless us with.  The energy it takes us to worry, plan and predict is energy that can be channeled into our spouses, children, parents, friends and most important, our own happiness.  This is definitely a work in process for me, I’m not so good at it personally or professionally.

So my personal objective for this coming year is to be present for Jack, Renee and the rest of my family while also satisfying my own professional and personal needs.  And when I start stressing about my own mortality, I’ll just hammer out some miles on my bike, which I love, and visualize (but not stress!) being the healthiest Dad at high school graduation, even if 60 years old.

Mission Accomplished!

Jack seeing me off just before the race

This past weekend, we took a family trip to Las Vegas for three reasons – to visit some of Renee’s family, to do a “dry run” of having Jack in a car for a 5-hour stretch in anticipation of our upcoming move and finally, so that I could participate in the Las Vegas Gran Fondo, a road cycling race through the Red Rock Canyon area.  Believe it or not, we actually had a great, energizing weekend on all fronts.

Jack did great… as long as the car was moving.  He only started to get fussy when we returned to LA and hit the inevitable stop-and-go traffic that defines this place.  Renee really enjoyed seeing members of her family, including some that she had not seen since her childhood.  And I had a great race on Saturday, completing 100 miles and 8000 feet of climbing in just over 6 hours.  Somehow, I managed to finish in first place among roughly 60 riders.  Jack wanted to enter the race as you can see, but was disqualified since he had 4 wheels instead of 2.

 

Jack disqualified for using 4 wheels

All in all, a wonderful trip which gives us some confidence for our upcoming cross-country move  to Texas 9 days from today.

The Love For My Son

I’ve always heard the comment “you’ll never understand the love you can have for someone else until you have a child” and while I appreciated the point of view, I never really understood.  Now I do.

During Renee’s pregnancy, I never really had a deep bonding with this baby that I’d never seen and only periodically thought about throughout the day.  For Renee it was entirely different since she had this being growing inside her.  He was always present for her and there was a special bond developing and growing over those nine months.

It began for me in one precise moment, a moment I will never forget.  When his head first appeared in our world, that 1 second moment, I knew he was mine and that I already loved him in a protective and sacrificing way more than anything else in the world.  It really is hard to explain – unless you’ve experienced it then you know what I mean.

What’s so strange about this for me?  I don’t even know him.  I mean, even now after three weeks, he can’t talk to me, engage me or reciprocate my love in any way.  He can’t yet even look me in the eye.  All he does is sleep, eat and poop and while he is the master of all three, it’s all he can do and my interactions with him are exclusively caring for those three needs.  So why this deep, overwhelming emotional connection?  There is one attribute of a child that is unique about any other relationship or connection we can have – with pets, friends, partners, parents – that our children came from us, we made them, they are uniquely part of us and for me there seems to be an innate “protective and sacrificing” love that does not and cannot apply to anyone or anything else in exactly the same way.

There’s another new and exciting realization from this experience – a deeper appreciation, understanding and bond with my own parents, particularly my mother, for the sacrifice, commitment, guidance and love that she had and continues to have for me.  I never really even thought about what it meant to be a parent, much less having an appreciation for the 42-year sacrifice, protection and guidance that has dominated my mother’s life.

My favorite time with Jack now is when he is awake and alert while I’m holding him, usually after feeding.  In the span of one minute, his facial expressions gyrate across an entire spectrum that seems to communicate happiness, sadness, laughter, fear, constipation, joy, anger, wonderment, confusion, rage, contentment, exhaustion and anticipation.  I watch him intently seeing not only the physical features that are uniquely Renee or uniquely me, but also the emotional expressions that resemble us as well.  I think about him growing up and visualize various stages of his life when we can play together, when I embarrass him in front of his girlfriend, seeing him graduate, imagining what his personal and professional passions will be and worrying about whether he will be happy in life.

But for now I’m content to cherish each day, as every day that passes is one that he is growing up and that is forever in the past.

One thing is for sure, I love my son.

A Week of Firsts

At 42 years old, I didn’t think so many “first” new experiences could possibly be packed into a single week.  That was before the remarkable experience of childbirth.  Renee and I welcomed our son Jack Robert Taylor into the world last Saturday, July 16.

Look at that hair!

Now that we are a week post-delivery, I thought I would share a few firsts in my life as experienced during the week.  I’m sure there are many more to come!

  • First time experiencing the miracle of childbirth.  And it is a miracle.  I was doing great helping Renee through the birthing process, really holding it together until I saw Jack’s head, then the rest of his body enter our world.  Then I lost it.  Remarkably emotional and never to be forgotten experience.  And made even more special by having my Mom and Aunt join us for the birth.
  • First time driving 20mph in a 30mph zone.  Seriously, I’ve got a bit of a lead foot and can’t remember the last time I drove the speed limit.  The drive from the hospital to our house was terrifying.  It was old lady driving at its best.
  • First time experiencing true sleep deprivation.  Now I’m a guy that needs his beauty sleep and while I’m losing some sleep, I’m actually sleeping like a King compared to Renee who is up constantly feeding.  We’ve worked out a system that in short has made our days highly efficient.  The next step?  Finding some time for each other.
  • First time there’s someone utterly dependent on me for survival.  I’ve become instantly unselfish.  There is no other way now.  It’s cool.
  • First time I felt relieved to the point of giddy by someone else taking a poop.  To be clear, the first few days are tense when the baby is losing weight and is not pooping and so when it finally came it was the best laugh Renee and I had since the birth.  Now we just laugh every time he poops because it sounds like a volcanic eruption and it scares him.  I’m laughing right now thinking about it.
  • First time I put my wife’s appointments on MY calendar.  Everything must be planned and synched between us.  If she can’t take our ESP machine (Eating, Sleeping, Pooping), then I need to care for him.
And finally,
  • First time I realized my life is really different now.  Friday night our neighbors were having a huge, blowout bash and there was a moment when Renee and I were on the couch, she was holding Jack and I was trying to figure out if the explosion I heard was Jack soiling his diaper.  Sticking my nose in his leg opening didn’t do it, so I stuck my finger in his diaper and got a creamy chocolate surprise.  So there I am, baby poo on my finger, looking at Renee and listening to the trance music and revelling next door.  I said, “Well, our lives sure changed overnight, heh?”.  It was good for another gut-busting laugh.
All you parents, what other “firsts” did I miss?

Renee on the Eve of Baby G

Renee on the Eve of Baby G. Inducing at 6am tomorrow. http://ow.ly/i/elOY

What’s Up G?

The waiting game is brutal, we are now 2 days past Baby G’s due date which normally might not be so bad, but we’ve been told for the past 6 weeks that “this baby is coming early”.  The OB/GYN said this morning that the earliest they would induce labor would be next Tuesday, putting us in week 42.  So at least we know worst case.  And we want to meet him!  The Nana’s have traveled from far and wide and are waiting here with us.  Renee has been handling everything amazingly well – including daily trail hikes, stairmaster and bumpy car rides to “encourage” the little guy to start his journey.  So what’s up G?  Let’s get this train rolling!

As for me, its been hard to get motivated to write, work, read, job search, think, exercise, you name it.   The Tour de France has been a great distractor and reason to procrastinate as it is every year for me.  This year’s Tour is particularly engaging and unpredictable.

I’ll probably continue to be off the grid for awhile with regards to any professional posts unless something comes along that I just can’t help reacting to!

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