Waiting Room

"Life is like a box of chocolates....you never know which one you're going to get."

If you told me 15 years ago that I was going to be married with two kids, I would have laughed right in your face.

If you told me that not only was I knowingly going to decide to start a family and try to get pregnant but that five months into my first pregnancy my baby would be diagnosed with a very rare and very life threatening heart condition I most definitely would not have laughed but might have said something like, "Seriously? Me? Are you sure?  That doesn't sound like a good idea...umm....at all."

If you then told me that I would have ANOTHER baby a short 18 months after my first kid had two open heart surgeries and all the shenanigans that goes along with that, I would have said, "You've got to be shitting me."

But here I am.  All of those things have happened.  I have survived them and I'm still putting one foot in front of the other the best way I know how.  I never in a million years would have guessed that any of this could be true....and yet, here I am.

Probably THE most important lessons I've learned about being a heart mom is from other heart moms who have been willing to share their experiences with me and from the countless moms and dads I've chatted up in all kinds of doctor's office waiting rooms over the past two and half years.  What?  Chatting up people in a waiting room?  That doesn't sound like you at all.... 

It has probably been the single most humbling experience of my life to meet other moms who wake-up everyday with the same challenges and struggles we all face when raising young kids (paying the mortgage, keeping the marriage together, just generally trying not to lose your mind...) but have so much more on their plate than you would ever think to imagine.

None of these mothers chose this life knowingly.  And I include myself in this.  They never in their wildest dreams ever thought they would have a sick child or a child with physical or psychological limitations.  You wouldn't wish that kind of thing on your worst enemy let alone yourself.  And yet, they get up, they put on their clothes, they try to pull it together mentally to make it out the door and face all the fears, all the worry, all the appointments, the tests, the co-pays, the needle pricks, the therapies, the research, the surgeries, the consults, the consent forms, the support groups, the medications, the monitors, the child care, and all the while....keeping an eye out for those pesky warning signs that your child's health -- mental or otherwise -- has "changed" and you need to let one of your specialists know.  And the goddamn worry that ensues immediately after...is this a big deal?  A little deal?  Are they going to be ok?  It's not easy....but it is the road.

So we all sit in these waiting rooms together.  We know we're all dealing with shit just by virtue of being wherever we are in the first place.  But what you SEE in these waiting rooms is astonishing.  What you talk about in these waiting rooms is as much heartbreaking as it is eye opening.  Everybody has their "cross to bear" and at the same time everyone is positive the person next to them must have it so much worse than they do...and oftentimes we all spend a lot of time saying, "God, I don't know how you do it," to each other when we all know we individually have our own stories and our own challenges and we're just trying to hang in there with it all.  It's kind of a flipped-upside-down/morbid version of the "grass is always greener" concept.  You're just so damn sure you can't possibly have as hard of a life as the person you are sitting next to.    

Being a heart mom has brought me into the lives of an unbelievably wide array of children and families  I knew absolutely nothing about before my daughter was born.  Audiology waiting rooms with moms signing to their kids.  GI waiting rooms with kids playing while hooked up to their feeding tubes. Neurology waiting rooms with these suped-up enormous wheel chairs like I've never seen before holding up and supporting every limb of a child's body.  Physical and Speech therapy waiting rooms where kids are scooting, hopping, limping and backwards army crawling across the floor while other kids are completely silent, not speaking or looking at anyone, speaking but no one can understand what they are saying, yelling and throwing their bodies around because it's the only way they know how to express themselves, or trying to communicate with their parent but repeating the same couple of words over and over and over again.

Just writing that last paragraph was hard and I'm sure reading it was hard.  It's hard to think of people going through these things and not shed tears or feel overwhelmingly "sad" or "sorry" for them and what they are going through.  And I'm sincerely not trying to be depressing here --  or make people feel worse than they already do for not "counting their own blessings" or feeling like -- "how can I complain when other people have it so much worse than I do!"  This is where being a heart mom has changed me forever.  It's not sad.  It's reality.  It's the everyday.

Alright -- so maybe it's not fair to outright say it's not sad.  It's fucking sad.  I'm sad that my daughter has half a heart only because I wish she had a whole one.   But the mothers and fathers that I have met in these waiting rooms are not "sad."  Sad would be far from the list of words I would use to describe my fellow waiting room buddies.  In all honesty, most of us are just grateful to be there at all.  Many of us either had to face the decision of whether or not to terminate our pregnancies after a diagnosis, or feared that our child would not make it in the early days and months after they were born.  Or we had a healthy child at the start in that they were originally smiling, cooing, laughing, giggling, and then all of a sudden one day they just emotionally disappeared from us.  Either way, we've almost lost or feel like we've lost our child in one way or another and sitting in these waiting rooms means we're still riding it out, we're still here, we're making a tough situation work, and we're going to get through it because we owe it to our kids.  We owe it to ourselves.

So, no matter what the severity of the diagnosis is -- and as different our day-to-day's often are  -- we sit in these waiting rooms -- sometimes we talk to each other -- sometimes we don't -- but when we do talk -- there isn't a single mother or father who hasn't said to me in one way or another  -- I had no idea this would be my life.  I had no idea I would face these kinds of challenges.  But now that I am facing them,  I don't know any other way that my life would be.

We have our children with us and we're getting by.  And when it comes down to it -- it's really not any more complicated than that.  Those of us who have lost our children -- and there are many -- would give anything to sit in a waiting room with their child for all of eternity.  We know this and therefore we make it work.  All of it.  Doesn't mean it's pretty, or even all that enjoyable at times, and it sure as hell wasn't what we expected going into this -- but it's what we know.  And once you do enter into this world, what originally felt like the most isolating disaster of a lifetime turns into a place where you are never alone because there is always someone sitting right next to you.