The road of parenting Kaylee, I have found, is fraught with emotional fender benders.
The other day Jon and I were talking parenting talk and I melted into tears because I missed out on two months of my children's lives. My youngest son was a different person when I came home.
And it will always hurt, just a little bit.
So I took a moment to grieve, exchanged insurance details with my psyche and asked it to use its indicator to give me a little more warning next time. And I moved on.
Kaylee started vomiting old blood last week. As gruesome as this sounds it was not totally unexpected and it just indicated that we needed to adjust some medications, which we did. However, it does indicate that Kaylee's reflux is getting worse. The old blood and the fact that I am spending approximately 1/3 of my time settling a tired, sore, Kaylee. If I hold her she relaxes which helps things calm down. If the reflux hits and I have to leave her she tenses against the pain and stresses, which makes it worse, which makes her stress and tense more which sends her into a spiral of pain, stress and ultimately, usually, vomiting stomach juices.
You don't hear much, she is so quiet you could be forgiven for not noticing, but I do hear it and I feel it in her when I pick her up. I have been watching her for four months so I tend to know by the crease in her brow and the way she is holding herself how bad it is.
And sometimes I get tired, weepy and fed up on her behalf, and my own behalf, and on behalf of my husband and other children who are also robbed of time and energy by the curse of Kaylee's pain.
I back up, forgetting to check my rearview mirror, and bump into grief. I check the panels and wonder if anyone will notice the damage, then move on.
As much as I try not to borrow worry from the future, there are moments. Moments when I imagine a scalpel slicing down the thin mauve zipper scar on Kaylee's chest and the terrible destruction those gentle, skilled hands will have to wreck in order to fix that tiny pump.
I remember seeing the machines helping my daughter breathe and having to suppress the urge to tear them off her. The IV lines dripping medicine into her veins and her splinted arms waving in the air as she struggled against it all. Listening to anaesthetists tell me all the ways a procedure can go wrong then signing the paper for them to do it anyway - because if I don't, she will die. And I know that we will have to do all that again in the near future.
And after her heart, comes her cleft.
And after her cleft, perhaps gastro surgery.
And more tubes, different tubes, the same tubes - who knows?
And whatever those tiny little monkey feet present as she grows - therapies, more surgery? Who knows.
And before I know it I forget to hit the brake and rear-end grief and anger and helplessness.
The cleft palate people from Hobart sent me information on how to introduce solids to my cleft palate baby. I had to suppress the urge to scream in frustration and tear it up. Solids are not even on my radar yet.
I have defect envy.
There are people whose children have 'just' a cleft palate, OR a heart problem, OR potential intellectual issues, OR feeding issues, OR digestive issues, OR potential developmental issues etc.
There are people child's heart condition is fixed with an overnight stay in hospital at age five, or one quick surgery with a ten day recovery and no infections or complications.
There are people who take their CdLS baby home from hospital drinking under their own steam.
Screeeech, CRASH, tinkle.......sorry officer, I didn't see the light.
And on days when I am tired, pressed for time, frustrated or sad, I feel every ding.
Kaylee is snuggled into my lap. Her soft pudgy thighs showing a faint sheen from the cold sweat raised by her latest encounter with the reflux monster. She is asleep and most people would think that she is peaceful but I know by the furrow of her brow and the way she holds herself, she is just too exhausted to fight against it any more and resting against my soft chest is the most comfortable she is going to get.
And I type because I can do that without disturbing her.
And I see the soft folds of her plump, perfect baby arms.
I see her crazy, wild, untameable locks pointing in every direction like a dark, silky sparkler.
I see her beautiful long lashes, her sweet pink lips, her tiny little monkey feet that look so weird - and so beautiful.
And I am thankful.
Thankful that I get to hold my little girl.
Thankful that after this surgery, which is a comparatively simple one for our brilliant surgeons, Kaylee's heart will beat every day without medicine or concern. And that silvery mauve zipper will be allowed to stay healed forever.
I am thankful that through that tube there runs my milk with no supply issues or concerns, helping her get strong and working to prevent a million different problems and issues that we COULD have but don't.
Thankful that my daughter is likely to live and grow, not wither and slowly die like so many beautiful children, loved children, who have "genetic issues".
I watch my tired husband cleaning up the dinner time mess from a meal which he cooked with our children sleeping in beds he tucked them into so that I can sit and hold our sleeping baby.
And I am thankful.
A wise man once said:
OK, perhaps a writer wrote those words and an actor pretending to be a wise Time Lord (who isn't actually a man but an alien who is shaped kind of like a man but has two hearts and is very, very smart) said those words but...........sorry, geek babble, moving on.
and it's true. The bad things are bad. Very bad. And the good things don't make the bad things go away. They don't even always soften the blows of the bad things. Sometimes the best the good things can do is provide a nice distraction from the bad things.
But the bad things don't steal the good things.
No amount of medications, procedures, heart break or frustration can steal from us the small, perfect moments that we share.
Some times my days look like this:
Some days they look like this:
Other days they look like this:
And on far too many days, I look like this:
But the bad, it doesn't kill the good. The good is good.
And day by day, I pray I will remember this: