So I was wandering around Target tonight, waiting for one of Jilly's prescriptions to be filled and it hit me: I AM SO NOT READY TO GO THROUGH THIS AGAIN.
I mean, I know that we've known this was inevitable. That this would be coming up. That Jillian absolutely needs this surgery to live, but for some reason... I don't know. Today it just hit me.
JR and I have been trying to abide by this "it is what it is" kind of attitude. We try not to question why this is happening to us, our family, and most importantly why her? Why our little girl? Why are we "lucky" enough to have two kids with heart problems? We try not to ask these questions, because those are questions that will never be answered for us. Not in this life at least...
I try to accept the fact that we've been thrown into this medical world that we'd never have chosen for ourselves and certainly not for Jillian. I try to accept that this is how things are supposed to be, for whatever reason. I try to just roll with the punches- the never ending appointments, medicines everyday, literally pumping formula directly into her little tummy through a tube, keeping our family on lock down so we don't get sick (although this recently was a big FAIL), the constant worry and the guilt, oh the guilt! Because when answers are impossible to find, guilt fills their place. I try to accept this... all of this and more.
But some days are hard.
Some days I want to scream and cry and hide from the world. Some days I want to look at my daughter and believe that she is just a regular, normal, healthy little girl, at least for a little bit. Some days I wish I could just will her to take more than an ounce at a time from her bottle. Or maybe if I pray hard enough or wish on the right star, her heart will just be healed for good. I hope every. single. day. that medicine will advance fast enough to prolong her life past 20 or 25 or 30 years old.
Some days I have nothing but questions.
Today is one of those days and the only thing I know for sure is this: I'm not ready. I'm not ready to see her struggle after surgery. I'm not ready to see her in pain and not even be able to pick her up and cuddle her. I'm not ready to see her swollen, with tubes coming out of her chest. I'm not ready to watch my baby fight for her life again. I'm not ready to spend day after day just sitting there feeling like we can't do anything for her, searching for some part of her body that isn't covered in wires or bandages or monitors- somewhere that we can caress her at least a little bit so she at least knows we're there. I'm not ready to have to wait for someone to tell us, however many days after that we can finally hold her again and comfort her as best we can, knowing that we can't take away her pain. I'm not ready to watch the numbers on the monitors go up and down and the alarms go off at all hours. I'm not ready for my family to be pulled apart again. I'm not ready to try to explain to Oli and Athan why mommy and daddy are gone and that Jilly needs "to get her heart fixed," because they can't and shouldn't have to understand. Plain and simple: I am not ready.
What I am ready for, though, is for this to be over. For her to come out on the other side, the fighter that she is. I want so badly for this second heart surgery to be done and over with and out of the way so we can have a couple of years to just be the family we haven't really gotten the chance to be yet, before we have to put her through her third surgery. I want this so bad... so for now, I'll put on my big girl panties and a facade that says, "I'm strong!" I'll hide my tears from my boys and go on with our day to day life...
I'm not ready, so for the next couple of weeks I'm going to try to remember to cherish every single smile I get from her. I'll try to leave the stress out of every day and enjoy every day I have at home with all three of my kids together, no matter how crazy they make me. I'm not ready, but by surgery day I will be. Because once this is over, I know it will all be worth it.
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