This we took Lucy to see specialists nine hours away to check on the function of her kidneys.
Girlfriend's kidneys are still ok but her bladder is stretched out because we haven't been catheterizing her for the last two years because our doctor here said we didn't need to be doing that.
Now she has a stretched out bladder and I'm worried it won't ever return to normal.
By the way, if you're the beast of a woman who accused me of blogging my daughter's medical issues for monetary gain, stop reading. Yes, I know you're reading because there's this thing called Sitemeter that shows me who you are and where you are and that you read. A lot. So, if you're so concerned about that, then stop contributing to the problem and being all Al Gore lecturing everyone about carbon emissions right before he eats steak pancakes on his jumbo jet.
Where was I. Oh, yes.
I read this poem called "Welcome to Holland" about how life with a child with special needs is not bad, just different.
I call S#*! on that one.
I believe that sin entered the world, covering everything with a blackish hue. Thusly, we have wars and GMOS and Justin Bieber's hair and cancer.
We have stuff that sucks.
Watching my daughter scream while she underwent diagnostic tests was horrid. Hearing her yell, "Please, Mommy! Don't let them hurt me!" While I did, in fact, let them hurt her, made me cry and cry and cry in that plastic chair, holding her warm little hand and loving her the best I could: allowing her suffering because I knew it was best for her in that moment.
Knowing that something that hurts is best for your child still, quite honestly, doesn't make it suck any less. My daughter was born with a laundry list of birth defects that will always affect her. There is nothing I can do to soften that news for you, or for me, or for her.
While it all sucks, the fact remains that I have the top doctor in this field working for my daughter. He performed a 12 hour operation to allow her a more normal life. I handed her over to this man and he watched her as she fell asleep on cherry flavored laughing gas, knowing she was somebody's newborn baby once, curled into herself on that NICU bed with the nubby pink blanket, a child prayed for and longed over and given to the nursing staff because there were just so many things wrong.
I imagine his hands as he makes that first incision, blood seeping from scalpel as sinew is cut. He has no idea that she bites the air with her mouth when she's cutting paper for a Valentine or that she hates peanut butter with a blazing hot passion.
On that operating table she lays, the surgeon's hands fixing what her mother's womb failed to make right the first time. He works with an assuredness, a knowledge that this child has parents who are having trouble finding their breath in the waiting room, heads full of worst case scenarios and what-ifs.
His self-assuredness is less cockiness and more a trait fashioned for him by fate, something necessarily supplied for a mere mortal whose job is to patch up parents' botched dreams.
Am I calling my daughter a botched dream? Hardly. She's more than I ever dared hope for. She's witty, and sensitive, and she hates to clean her room.
Still, when we visit that hospital nine hours away I remember a time not so long ago when I handed her over that very first time, covered with vernix and already being prepared for surgery.
Handing her over again and again to procedures that hurt and an uncertain future has me discovering that just when I think we have it all together with her, it's really some old fashioned Shakespearian hubris and we really don't have a clue.
Still we press on, knowing the folly of every parent is indeed the "what if", the "could have been" and the "I should have."
No matter what we are told, the care and love we provide our children never seems adequate.
Something is off, or left over, or accidentally ignored.
Still, I think of her surgeon's hands, so sure in spite of his humanity.
At the end of the day, we have to make peace with the fact that we are not, ultimately, the designers of our children's fates. It's a hard won lesson for me, and quite frankly one that I find myself learning over and over again.
And then, as quickly as those doubts and fears have come, they are gone.
I imagine the surgeon suturing her new belly, various organs within modified and remodified until they meet his satisfaction.
I see a slight smile tug his lips as he imagines this child's parents, standing over her as she opens her eyes in recovery and asks for a drink.
A piece that had silently become unhinged in her mother's chest pauses, falls and clicks back into place.
Her heart is back.