I am a worrier. Always have been, probably always will be. Motherhood was bound to make it worse. Throw in a coupla kids with heart problems, and I am lucky to be among the still sane of the world.
You see, cardiomyopathy is a thief. It robs families of so much. Things that you normally would take for granted, like sports, eating correctly, sleep habits, diet, school routine and more. Everything changes. Everything.
Cardiomyopathy has made me second-guess every little thing I do. I even find myself looking through my recollections of both girls' babyhoods and trying to figure out if I "should have" known something or should have done something different. I know that I should not try to look back on what's already gone. I really do. But sometimes it cannot be helped. For instance, when you get shown the xray of your daughter's enlarged heart. Should she have had an echocardiogram six months ago? Would it have made a difference? It's not enough that it knocks you off your feet to get a diagnosis like this not once but twice. No, the cruelty of being a worrier is that certain thoughts and ideas lodge in your brain and don't let go no matter how hard logic and hope tries to make them leave your thoughts.
Cardiomyopathy is the devil on my shoulder. It pesters me, day in and day out. It points out all the things it has done-taken appetites, restricted growth and development, enlarged hearts, caused scars and pain. It's proud, this devil, of the havoc it has wreaked upon my life. It's even more proud that it has attacked BOTH of my children. It sits there in its smug existence, trying its very hardest to sap every ounce of mental and physical strength I have. Some days it takes its toll more than others. Today being one of those days. I wonder sometimes how I am going to be able to do this. To raise two children with complex needs and not lose myself along the way. Fighting for every calorie, every inch in growth, every teeny percentage of improved heart function. Watching my children get poked, prodded, scanned, cut and invaded. Dosing them with medications every single day. Having to tell them no to things that other kids are able to do. Being the bad guy. I want to scream sometimes. To cry out to this awful disease to stop taking and taking and taking. It's time for me to do some taking of my own.
I am taking charge. I am slogging through the muck and mire and saying this:
You can make me worry.
You can make me cry.
You can make me exhausted, self-pitying, and sad.
But you cannot make me stop fighting.
If I have to drag myself through the mud on my face to get to something my kids need, so be it. One of these days, Cardiomyopathy, I am gonna drop-kick that devil off my shoulder.
And laugh with my children about what we have accomplished.
Consider yourself warned, you ugly rotten devil of a disease. This is war.