Protecting the Broken Hearted

It seems as a parent of a child born with a broken heart, my field of vision is often confined to her heart defect.  When I look at her, I can’t help but think about her in terms of the heart defect.  I have only experienced two days of her life where I wasn’t aware that something was wrong with her heart.  We celebrate anniversaries of surgery dates.  Time is often measured by when her last cardiology visit or open heart surgery was, and I’m constantly aware of the milestones and accomplishments she achieves because I know many who don’t get those.  Seeing her without thinking about that amazing but broken heart is difficult.

I’ve preached here before to make sure that Tetralogy of Fallot does not define your child–and I stick to that.  She never looks at herself  and thinks, “It’s pretty amazing I got to come to Disneyland and ride this roller coaster considering I have a heart defect” or “It’s been eleven years since my open heart surgery to correct my Tetralogy–it’s amazing what I’ve accomplished in that eleven years.”  Those are my thoughts, reserved to me alone.  Abby is just like any other eleven-year-old, whose thoughts focus on how cute the clothes at Justice are or how much she loves Taylor Swift or how excited she is to see the last Harry Potter movie.  Her heart defect is a fleeting thought, a part of life like visiting the dentist or having a physical–nothing more to her.

At the Dentist

I’ve heard adult CHD’ers claim that parents of heart children make a bigger deal of the heart defect than the actual heart patient themselves.  I completely agree with that statement…after all, when a doctor hands you a brand new, tiny, beautiful baby and tells you their heart is seriously flawed, your world comes crashing down.  The baby however, is blissfully unaware of her flawed heart, working overtime to keep her body alive.  After all, when you walk into an intensive care unit and see your tiny baby covered from head to toe in wires, tubes, and bandages that are keeping her alive, the emotional impact is huge.  That baby will never remember a thing from the traumatic experience.  Parents naturally make a bigger deal out of their children’s heart defects because they KNOW the difference.  They know that life should not be that way–that it isn’t fair!

There is a but to those statements…one that heart parents would do well to heed.  There is a danger in overprotecting the broken hearted.  Studies have shown that adults living with heart defects, which is now at 90% of those born with heart defects, who are overprotected during adolescence, suffer from heart related anxiety as adults.  The study encourages parents to stress greater independence in their heart children which will foster improved psychosocial adjustment.  They will be less likely to need attention due to their heart defect and will not need to define themselves according to their heart defect–in essence, having better self-esteem and social behaviors.

  To be honest, that is easier said than done!  Giving up the overprotective urge is difficult.  But it can be done–within reason.  I will always overprotect Abby to some degree.  I tell her teachers about her heart defect and encourage her to sit out on activities if she feels tired or fatigued to an extreme.  But she is allowed to take gym class (with a doctor’s okay).  I worry about her when we ride roller coasters or swim in the ocean.  Hot days create a broken record effect in which poor Abby hears me ask “have you been drinking enough water?” 100 times a day.  But she is also encouraged to play outside on hot days.  She is allowed to ride the roller coasters (with the okay from her cardiologist).  She is taken to the beach or the mountains or backpacking or camping or swimming…just like all her friends.  She is given every opportunity to live life to the fullest…after all, we didn’t do all in our power to save her life to make her sit it out on the sidelines!

I have to constantly find that fine line between overprotectiveness and being a responsible parent to a heart child.  Abby’s cardiologist and pediatrician help me create those lines.  Every activity is discussed and weighed out but, finding the balance can be done.  I am far from perfect at it, but I try to take off the heart shaped glasses frequently, and remember that Abby is not just an eleven-year-old with a heart defect…but just an eleven-year-old!

The Sun Will Come Out…

In April Abby made her star debut in the musical “Annie” at a community theater close to our home.  She was “Tessie,” one of the orphans.  For those of you who have seen “Annie” once or twice but don’t really know the show, she was the “O My Goodness!!!” orphan.  She also sang the solo in the song “You’re Never Fully Dressed Without a Smile.”  Indulge me as I brag her up a bit!  She was outstanding.  She kept the audience laughing with her repeated “O My Goodness” line.  And when my tiny little Abby opened her mouth to belt out “Hey hobo man, hey dapper Dan…” her voice could fill the theater even if she hadn’t had a microphone.  More importantly, Abby had a fantastic time!  She made some great friends with the other orphans and she is hooked on theater.  Even though Abby came with an arm full of physical trials, she also came with the talent to match!!  I couldn’t have been more proud at her courage to try, her courage to sing, and mostly, her ability to make friends and thoroughly enjoy the other girls in the play.

On Abby’s opening night, as the lights came up and I watched Abby perform, I couldn’t help but get emotional.  I don’t know too many other people who have cried frequently through the musical, “Annie,” but I did.  I felt so blessed to be sitting there in the audience watching her.  It felt so good to be sitting back–being astounded by her courage and talent and strength, only this time, while watching her do something she really enjoyed.  No pain involved, no tests or procedures, no surgery…just pure enjoyment!  Eleven years ago if someone had told me that the sun would come out, the gray skies would disappear, and that we would have some amazing days, I wouldn’t have believed them.

I know not every CHD’er has the same story as Abby.  Every one is unique and every story has its own storyline and own ending.  We don’t really know Abby’s ending yet.  I’ve been around long enough to see that sometimes the endings are a complete surprise…completely unexpected.  Some stories are shorter than others, but all of them are lasting and important.  But for those mothers who are visiting, having recently learned about their own broken hearted child, there is hope.  For the grandmother visiting here whose own heart is broken from learning that her grandchild may soon be born with Tetralogy of Fallot, there is hope.  For all who have stopped by, to learn more about congenital heart defects or to find answers about open heart surgery, there is hope.  Some day, you may also be sitting back watching your CHD’er accomplish things you never thought possible.  You will be the one crying at every milestone.  Every first will bring a lump to your throat, every birthday a little more gratitude in your heart, every accomplishment–big or small, will bring tears to your eyes.  The sun will come out from behind the darkened clouds.  And at times, hope will be not only all you have to hang on to, but everything you have to look forward to.

 

Burdens of a Broken Heart

We’ve been gone for a long time…too long, really.  Life has been happening here.  The everyday kind of life that happens to all of us, broken-hearted or not.  Abby has two new baby brothers who have kept all of us busy.  She was a star in her first play, and brought the house down as “Tessie” in the musical production of Annie.  We have been finishing 5th grade, preparing for an upcoming back surgery (more on that to come), and just living, the way people live who don’t know about congenital heart defects–or the way those of us who do know about it live after the surgeries and shock of it all wear off.

Although we’ve been away from here, it certainly hasn’t been far from my mind.  I think about heart defects nearly on a daily basis.  I read about friends whose children are having surgery or procedures, I hear about a new mom who has just received the frightening diagnosis of a CHD, I live in the world where CHD’s are just a part of every day.  I received a message from an old friend the other day who brought CHD’s to my mind.  He wrote, “I know your burdens are heavy, but I’m confident no one is better equipped to carry them.”

It’s a beautiful sentence isn’t it?  The kind you generally hear about other people, people fighting cancer or facing death.  It certainly couldn’t have been meant for me.  After all, I was certainly not equipped to carry the burdens of having a daughter with a broken heart.  Abby’s Tetralogy of Fallot has brought me crashing to my knees more times than I care to admit.  I have crumpled up in a limp heap crying in others arms often.  I have broken down in front of anesthesiologists, cardiologists, surgeons, pediatricians, and nurses too many times.  The burden weighs me down.

Being a part of this community brings not only my own burdens but others to my mind.  I have sobbed over learning the death of other children born with broken hearts.  I have sat on edge, nervous and fidgety, on days when I know someone having an open heart surgery.  I have been plunged into despair when another mother I have met loses their precious child.  I have run away from everyone involved with Congenital Heart Defects, avoiding my Facebook page, and dodging emails or blogs concerning them.  The burden has often beat me down.

But not for her.  She is really the one carrying the burden.  My burdens are emotional, aching for the well-being and pain of my child.  But her burden is triple mine.  She carries the emotional burdens of CHD as well as the physical weight of the disease.  She must experience the physical pain, the effects placed upon her body, the small growth, the feelings of being different, or restricted.  Her burden is definitely heavier than mine…and yet, she carries it gracefully.  She carries it with power and courage, putting my reactions to shame.

One day, not too far before I received this message from a friend, Abby looked at me in the car and out of the blue asked, “If you could have chosen for me to be born without a heart defect, would you have?”

My first gut reaction is…”ABSOLUTELY!”

But then I had to think about the question…about all that we have learned, faced, gained, and grown because of her heart defect.  I shrug, and say, “I don’t know sweet girl.”

She emphatically responds, “I wouldn’t want to be born without it.”

She goes on to tell me that her heart defect has made her strong, it has enhanced her spirituality, it has increased her capacity to feel for others…it has made her the person she is today…and she wouldn’t trade that.

Again, she has shown me that this heart defect is hers.  I am just along for the ride, for good or bad, cheering her on and having the opportunity to learn from her broken, but pure heart.  If anyone was ever equipped to carry the burden they were given, it is my Abby and her perfect broken heart.