Ten years ago today I was in an Urgent Care being told my daughter's heart was misshaped and we needed to see a pediatric cardiologist immediately. Ten years ago today my normal life changed forever. Ten years ago today God said, "Oh by the way I have a new challenge for you" and He pushed me off of a cliff.
For 18 days I free fell into an abyss I knew nothing about. I did not know how to respond to the information I was given. I did not know how to share the information I was given and there was a chance the Urgent Care doctor was wrong. I went radio silent, for my own sanity. Or so I thought. I worked, focused on the present and my kids. I had an 8 week old, a 3 and a 4 year old. I could not wonder about the what ifs. Today was all I could handle.
When the 18th day finally came, I hit the ground so hard I made my own crater. However, I was in an unknown place where I knew no one, I did not understand the language and I kept getting the same pity look from all these really nice people. The one sentence that has stuck with me that I will never forget, "This is NOT your fault!" followed by "There was nothing you could have done to prevent this." After that it was a hurricane of "Coarctation of the Aorta", "Open Heart surgery tomorrow morning" and my favorite "There is no medical reason your daughter should be alive today".
These phrases should have made my knees buckle. But they didn't. That Urgent Care doctor saved my daughter's life. The doctor who told me it was not my fault has been one of my daughter's biggest cheerleaders. The head of pediatric cardiology who told me my daughter shouldn't even be alive has been a presence in her life that he is more like a family member then a health care provider. Those were not pity looks but medical care providers and other families that were welcoming us into a club we never asked to join. "The Heart Warrior Club" and I am a Heart Mom not by choice.
Sometimes that is the hardest part. When your whole life changes because of a medical diagnosis whether you or a family member everything you ever knew as safe and normal gets blasted into space, never to be seen from again. It makes my angry. Some days so angry I can't see and just burst into tears in the strangest places. I cannot tell you what is wrong. Just that it is wrong, wrong on so many levels my parental anger cannot be explained in just a few minutes or even a few hours. I have found ways to vent my anger some days good and some days not so good. Yes I realize we are talking about a 10 year journey and I have a lot of anger about it some days. Adding current day frustrations, I needed an outlet.
In recent years I have started doing 5k's. Don't get me wrong I am no runner. But I walk them start to finish and try and do better than the one before. I have put my body through 20 degree starting line temperatures as well as 100 degree start lines. Over the summer I started walking. Not just walking but speed walking. I can walk 6 miles in about 90 minutes at about a rate of 4 miles an hour. I have been told that it really fast. Some days my frustration is so bad that I walk myself into pure exhaustion. I shower and go to bed.
At the beginning of July I bought a new pair of kicks for a 5k. By the end of July I had walked 89 miles and wore the logo off the bottom of my shoes. Needing a new challenge I decided to try and walk 100 miles in less than 30 days. Upon completion of that with a day to spare, I still needed a new challenge. Boy did I find one. It was called the Muddy Princess and it kicked my butt but not before I did a little high kicking of my own. Basically it was a Mudder for women and it was fun; gross and dirty but fun. I crawled through mud up to my chest, up inclines and back down the other side that should have been illegal, rolled my ankle, over a 10 foot tire wall, through a series of 55 gal drums tied together down in a mud pit. My body was stained Southern Clay. To get out of the last obstacle I had to punch and kick my own steps in the mud wall to pull myself out.
Would I have tried these things had I had a heart healthy child? Honestly? Probably not. I can't even fathom where I would be today or what my life would be like had it not been for this life altering experience. Excluding family, less than 50% of my friends/acquaintances have nothing to do with a CHD or Madelynn's journey. The remaining more than 50% are because of Madelynn's heart defect. I lost friends because Madelynn was born with a CHD. It probably shouldn't but that made me angry.
More that 50% is an amazing group of people it. People I would not have been able to make it through day to day living without. Friends that reminded me, if my child can fight her way back from a near death experience, I can keep fighting and find a way every day. Some of these Heart family friends have picked me up off the floor and didn't even know it. Others days I listened to them vent, scream, yell, cry and was the pillar of strength to help them get to the next day. But when that call or conversation was over and I was in the silence of myself I wept. Not just cried, or shed a few tears but truly wept for them. Why did my child or their child have to be born this way? Why did my child survive and theirs die? Why is it so important that I go through this journey with them? What possible good can I do? I am just one person.
Some days I get to see the result of the good I do but not as often as you think. I know that is a selfish way to think but sometimes it would be nice to know that it wasn't all for nothing. Once in a while it would be nice to know I made a difference. The family you talked to felt a little less alone. The mom is little bit more at peace to know how she feels is normal for the journey. Otherwise why was I sent to hell and back?
One thing I have had to learn on this journey is never take anything for granted and that tomorrow is never promised, not for everyone. So what am I going to do about today? How do I make today and only today count? So for Madelynn, the anniversary of the beginning of her journey I am reminded to make every day count.
