I Heart Them.

Today is Congenital Heart Disease Awareness Day.  A day that celebrates fighters like our Dolly and advocates for research for tiny broken hearts.  I wanted to cook up some heart-wrenchingly emotional post that would move the world to action.  I want to motivate the world to care for children like Dolly.  I want to inspire people to go out and make change, not just for my daughter, but for everyone else who lives with the unknowns that we do.

Instead, I’m going to be honest.  It’s what I do here.  On a day that is supposed to be focused on love, we were focused on getting by.  We’re in crisis mode over here, and today, I’m barely keeping my head above water.  This is the reality of living with Congenital Heart Disease.  Maybe my being honest about this will make someone, anyone, understand how things need to change.

FPD and I spent all day pouring meds into our Dolly.  She now takes seven of them, they each need to be taken two to three times per day.  I’m giving Dolly meds 18 times per day.  It bites.  She hates it.  She bats my hands away, shouts and screams “ALL DONE!”, not in an angry way, but in a way that begs her will to become reality.  All I can do is bite my lip and try not to cry as I squirt the meds into her cheek.

Some of these meds have horrible side effects.  One made Dolly puke after every meal while her body got used to it.  Another causes horrible heart burn which has caused fitful sleep for our Dolly every night since we returned home.  I’m tired.  So tired.

We haul an Oxygen tank everywhere.  We ran low on Oxygen halfway through our errands today and had to go all the way home to tap a new tank.  Our daughter will have to learn to walk while tethered to a machine in our home that is plugged into the wall.

FPD and I are too tired to celebrate at all.  Our kids barely got to celebrate.  We’re all struggling right now.

This is an honest picture of what this disease does to a family.

I hope that, soon, families won’t have to deal with this anymore, and that every child will be born with an unbroken heart.

who knows that tomorrow is another day.

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