The Why

I have been asked a few times if I am asking myself the question “Why?”  Why does my baby have to have a heart abnormality?  Why am I being put in a position to begin a very long and difficult journey?  Why can’t he just be healthy?  Why me?

Honestly, I learned a long time ago that it is fruitless to ask these questions.  Life is life.  No one ever promised it would be easy or worry-free.  I have been through enough of life in my 31 years to know it can be very unexpected, in both good ways and bad.  I don’t waste time with the Why-me, Woe-is-me crap.  (Not that I NEVER have a day full of self-pity; I do – it’s just the exception and not the rule.)

And – my intellectual mind looks around at all of the friends and acquaintances I have watched bring babies into this world over the last decade – not one of them has had a heart abnormality.  1 in 100 babies is born with a congenital heart defect.  1 in 100.  It is a lot more than you might expect.  Statistically speaking, it’s me.  My baby is the 1 in 100.  It’s just life.

Jalebi, today I’m going to have a Dairy Queen blizzard for you.  Not only because you seem to make me always crave ice cream, but because today, they give back to the hospitals that will hopefully give you the miracle of life.  I know you, too, will have days where you wonder “Why me?” … but I hope we are able to teach you to be deeply, truly grateful for every single day of the crazy, joyous, heart-breaking reality of life.




Secret Club

In the very short conversations I had via facebook with two members of the Help-a-Heart support group, I could already tell: This was a tight-knit group.  It is like a secret club that you never knew existed – and you never really wanted to be a member – but now that you are, you are so incredibly thankful it exists.  You are so glad there are those that have walked the paths before you – even though you wish no one had to go through all the emotions you are going through.

It is not the first time I have found myself in a “secret club” such as this.  My first experience was after losing my brother in a car accident.  It wasn’t until a year later, in college, that I started reaching out and helped create a grief support group.  I found out I wasn’t the only person who had lost a member of my nuclear family in an unexpected, tragic way.  And since then, I have had the very painful job of guiding other friends and acquaintances through similar circumstances.  Almost fourteen years after the fact, I have become a sort of veteran of this secret club.  Grief is no stranger to me, and I have great empathy for those experiencing its grasp for the first time.

Now I find myself thankful for the veterans of the congenital heart defect secret club.  The women and men at the support group this evening were welcoming and kind.  It was hard for me to share our story – it was hard for me to have tears fall down my face in a roomfull of strangers – but I didn’t leave tonight feeling like they were strangers.  We have a shared story – different but all bound in one common book.

And just as I seek to comfort and encourage those dealing with the raw emotions that come with losing a loved one, these veterans sought to comfort and encourage us.  Many went out of their way to be sure we knew we could reach out with questions and seek support.  It felt good to have such genuine interaction with people we didn’t know just hours before.  That is one thing about these secret clubs – There is no pretense involved, no falseness, no games.

It was overwhelming but also encouraging.  I feel uplifted and stronger, while simultaneously feeling just a bit more worried about what might be coming for us.  But – as we were reminded by a few people – it’s one day at a time.  We really can’t live more than that.

One day at a time.

Choosing to Love

I have always prided myself on my ability to love without fear.  Many times in my life, I have chosen to love with my whole heart, knowing I would likely end up with broken pieces on the other end.  I have always believed it is better to have the experience of loving wholly, unabashedly, than to never experience that kind of love at all.  The heartache is worth it, in the end.

Still, when I first heard our little Jalebi’s diagnosis, my knee jerk reaction was I needed to start constructing walls.  I needed to be sure I didn’t get too attached to this growing being, even as I start feeling his kicks more frequently and with more certainty.  I felt a need to protect my heart, because it just felt like too much.  Having a baby – being a mommy – is my ultimate dream, and the dream was shattering around me.  I feared my heart wouldn’t make it if I didn’t allow myself to create protection.

Thankfully, this was just a knee jerk reaction.  It was the initial emotion, one my husband admitted to sharing.  It is a very human response – a very selfish response – this need to protect our own hearts.

Since then, we both know and agree we will love this baby boy with everything we have, and we will do everything we possibly can for him.  Whether he is with us for a moment, days, or decades, he will know he is wanted and loved, cherished and not alone.

Besides, regardless of how long we get to have him with us, it is inevitable he will break our hearts.  Perhaps many times – I hope for many times!  This is what children do for their parents.  This is what we signed up for, the risk we took in deciding to have a family.

Jalebi, you are so loved.  As if I really had a choice.  Still, I choose to love.