Monday, 30 September 2013

My Little Athlete with the Heart Defect

    I stood at the finish line.  Waves of panic threatened to wash over my calm pretend exterior.  Where was she?  Most of the other girls in her heat had already run in.  My mind played horrid images of my little girl lying on the forrest floor, white faced, blue lipped.  I kept looking to see if I could see her, straining my eyes.  Maybe it was a mistake to let her run.  I realized when I began to feel dizzy that in my panic I had forgotten to breathe.  Where was she?  Oh God is she alright?  It felt like an eternity to stand in that too warm sun and wait to see if my little girl with the bad heart would run through the forrest clearing.  

    It was at Riley and Rowan's one year well baby check up that we discovered that Riley had a "heart murmur".   I was not really upset about this because I have a heart murmur, Grace has a heart murmur, it's not really a big deal, or so I thought.  We were sent to get an echo cardiogram at our local hospital and referred to a pediatrician.  It was at the pediatrician's office that the bottom of my world fell out.  It had only been 7 months before that I had lost my oldest son.  Most of that time I had been living in a grief stricken haze.  To get through each day I would try to remember what I should do.  Nothing came naturally.  Getting out of bed in the morning was an effort.  I got through everyday by "acting" like I used to act before my life was plunged into a Hellish nightmare.
    At that doctor's appointment we were to learn that Riley did not "just" have a "heart murmur".  No, she had a "congenital heart defect", to be specific she had Pulmonary Stenosis.  That meant that she had  a flap of skin that was covering her pulmonary artery.  This made her heart have to work extra hard to pump blood into her lungs (which could weaken her heart if it had to work too hard).  It may require open heart surgery to repair it, we would have to wait and see.  The pediatrician then referred us to a pediatric cardiologist in Kingston.   I rember lying in the tub that night sobbing, sobbing until I lost my breath.  WHY?  What had I done that would ever deserve this?  Why loose a healthy child, and then have a baby who had seemed so healthy and may need open heart surgery?  I still remember that worried look on Christopher's face when he looked at me, I think he wondered if my mind would come back from this one.
    Over the years since that initial terror, Riley's heart has begun get better.  Originally her cardiologist told us that she had high end / moderate, borderline severe Pulmonary Stenois.  We went every 6 months for cardiologist visits and echo cardiograms.  As she grew, the flap of skin that was over her pulmonary valve began to stretch.  Her diagnosis became low end moderate, to then high end mild.  This means that she is a healthy little girl, with a healthy heart.  Now Riley only sees her Cardiologist every 2 years.  He assured me that she could be an olympic athlete with her pulmonary stenosis.  Knowing this, we are however aware of what signs we need to be mindful of.  If her lips ever become blue, if she passes out with exertion, or if she gets more chest infections than Rowan, we need to get her to her cardiologist.  None have these have ever happened, but I still always am afraid, always ready.

    It is my standard joke that of course the child with the heart defect is our athlete!  It is a pleasure to watch the joy on Riley's face as she runs.  In the back of my head, although I know she is safe, I worry.  What if this is the time that she pushes herself too hard.  What if this is the time that she passes out?  It has been a real struggle to allow her to do normal kid things.   I would desperately like to bubble wrap her, keep her safe, keep them all safe.  Unfortunately in life in order to live, you need to explore and take chances, get hurt.  It's tough to take chances and explore when you are wrapped in bubble wrap, and so I hold my breath and let them live their lives.

    For the week leading up to the cross country race Christopher had taken Riley out running every night after school.  She loved not only running, but running with her Dad.  They took joy in their nightly runs.  Before and after every run he would get her to stretch.
    Last Thursday was her run.  She wanted to take the school bus to the meet with her team.  She was so excited.  Christopher asked for time off work to go and see Riley's race.  He was so excited.  We arrived before her run.  I kept telling her how proud I was of her, and even if she came in last I was proud of her for even trying.  In my head were the voices telling me about her heart, and how this could be the time that she pushed herself too hard and passed out.
    They called her running division (I think it's Mosquito Girls).  She went off, her stomach in butterflies and got ready.  I stood there watching her with pride.  She had such a look of determination. She had to go to the back of the pack.  Christopher and I both were concerned that she would have to pass so many girls to get up to the front.  "Get Ready, Get Set, GOOOO!"  She was off, passing most of the girls that had formerly been in front of her.  I looked at Christopher, his face was beaming with pride.  After a few minutes he decided that he wanted to get closer to the forrest path so that he could cheer Riley on to a big finish.  I wanted to wait at the end, so see her final moments of the race.  We stood there waiting, it seemed somehow longer without Christopher there to talk to.

    I watched the first ten runners all come in as a pack.  I will admit that I had honestly expected to see Riley up in the front.  She is a type A personality and won't stop until she gets what she wants.  I wasn't disappointed that she wasn't up there, just surprised.  There really wasn't a coach, no one other than Christopher had helped helped her.  More girls began to straggle in, still no Riley.  This is the point that I was beginning to panic.  Christopher later admitted that he was ready to run into the woods looking for her, because he suspected the same as I did.  As the panic was reaching an unbearable level, there she was, running, determined look on her little red face.  I stood there, blinded by tears, choking back hysterical sobs from pride and relief.  Christopher's voice echoed throughout the area, screaming for her, even though she was the only runner.  I started chanting her name, running towards the finnish line to grab her.
    After she had passed the finish line she staggered a bit, over come with exhaustion and heat, but lips bright red, not blue, skin red, not white.  She walked it off, taking small sips of water.  One of the other competitors had pushed her down on the path.  She had lay on the forrest floor for a little while in pain, and then gotten back up.  When she got up she was a little disoriented.  One of the high school helpers, eager to get volunteer hours, but not committed to doing right by the kids he/ she was helping was busy texting friends, and when Riley asked which way she was supposed to go, was pointed in the wrong direction.  Eventually she found her way back onto the right path and then gave it her everything.  That was why she had been so far behind, not because she was passed out along the path with no one to help her.
    It would be lovely to tell you that this had taught me a valuable lesson, but it hasn't really.  I will always worry about Riley's heart.  I can't see it to make sure it's doing what it should.  It will always be in the back of my mind that I have lost one healthy beautiful child, and I have to hold tight to the four that I have left.  What I do know is that my Riley is determined (I wonder where she gets that from), no one will ever boss her around, and that includes her very own heart.  She is a miracle, and I love watching her grow into the woman that one day she will become.

1 comment:

  1. It is so exciting watching the kids run, even the ones I don't know that well. We just stand on the sidelines screaming and yelling at everyone to go for it, even when they're from another school. And we never leave our spot until the last child goes past us. And at the end of the meet we can barely talk. tidey