Fight

"I know it sucks and it's kinda scary, but you're going to have to fight for her.  The doctors aren't going to do it.  It all lies with you."  Clara's provider told me this earlier with serious concern in her eyes, and I knew as she was saying it she was right.  She was agreeing with what I had just told her:  I plan to voice my concerns to Clara's pediatrician next week and convince him we need to find a plan of immediate action, even if it's within the same group of cardiologists.

I can't let this sit.

I know that if Clara was the cardiologist's daughter she wouldn't wait three months to find out if she was developing pulmonary hypertension--a condition that progressively gets worse and in which the life expectancy is just a handful of years.  I can't wait either.  I can't wait for it to progress to the point that it's irreversible.

It's so easy for a doctor to say, "I'll see you in three months."  And during that time the doctor doesn't worry.  She'll forget about us and pick up where she left off when we show back up; and if something is worse then she'll deal with it then.  That's the way it is in the medical world.  They can't worry about everyone.  They can't save everyone.

Clara smiles so big.  I hold her in front of me and her mouth opens and turns up, her eyes shrink into cute little half moons, and her cheeks lift in response.  She doesn't know.  There's a chance she could be getting very sick.  She doesn't know that her mommy's eyes are extra sparkly because she's fighting back tears every time she looks at her now.  She keeps smiling.

There is so much beauty with her.  Beauty that I have plans to live a long life witnessing.  Beauty that I don't mind if I'm the only one who sees it.  I don't mind if I don't have to share it.  But, I do mind it being taken from me.