Strong. Brave. Patient. Courageous. Tough.
I heard these words today, all in the course of a two hour appointment, all describing Kennedy. I can't argue with any of them...they truly do describe her. And I couldn't be more proud of her in the way she portrays these words. But, it also breaks my heart that she has to portray them so often, in so many different situations, for so many different reasons.
Kennedy's sixteenth surgery is scheduled for November 2nd. No ten year old should ever have to say that. She has undergone life-saving surgeries and quality of life improvement surgeries. She has had good experiences and bad experiences. She has had painful surgeries and not-so-painful surgeries. She has had easy recoveries and difficult recoveries. But when it comes down to it, surgery is surgery. And frankly folks, she hates all surgeries.
I've been walking a fine line for the last two weeks, in my role as Mom. You see, and other moms can vouch for this, Mom is the toughest role to play in this journey. I'm the one who gets to make most of the medical decisions. I am the one scheduling all the dreaded appointments and even more dreaded surgeries. I am the one who has to play psychologist. I am the one who has to help her make the decisions that will forever affect her life. I am the talker, the tear wiper, the rationalizer, the fact giver. And honestly, it is a draining role at times.
But despite her hate for surgeries, and maybe thanks in part to my role as Mom, Kennedy has decided that she does indeed want her new ear. She does want the journey to continue. She does want to do this thing. So here we are preparing for yet another moment of strength, of bravery, of courage, of toughness.
I mentioned in my Team Kennedy post today that I'm fascinated by the prosthetic process. In today's appointment, pictures were taken of one side of her head and flipped to the other to check symmetry, a mold was taken of her "good" ear so it could be matched, a plaster impression was taken of her affected side so they can have a model and make decision about where the implants for the ear will be placed. I wasn't allowed to take any pictures (so much for sharing everything with you), thanks to Kennedy's insistence, but let's just say the pink and purple goop combined with plaster didn't look like a fun experience. Not to mention all the grease and oil they had to coat her hair with so that the goop wouldn't stick. Despite the yuckiness of it all, it made us both excited and anxious to see the end result.
But long before the end result, we will be playing the surgery game yet again. Grandparents will come the day before. She will probably get a gift or two. We will probably go out to eat that night (and let's face it, I'll probably have a drink that night). We will hang out and Kennedy will stay up late. I won't sleep at all. We will all leave the house in the dark and head to the hospital. We will sit in pre-op forever, allowing Kennedy more time to worry. I will walk her back to the OR and kiss her as she goes off to sleep. I will cry as I have to leave her. I will hold my breath till they say she has been intubated. Her awesome doctors will work their magic. I will hold my breath till we hear she has been extubated. We will watch her go through hell in the recovery room as she wakes up. We will watch her fight an allergic reaction. We will eventually go home. We will wait and watch for an infection that we hope and pray doesn't come this time.
Between you (and you and you and you) and I, I think surgery will be the easiest part of the prosthetic process. It is extremely similar to her BAHA surgery from several years ago. That was her easiest surgery to date. We were home within an hour of surgery ending, she didn't even need Tylenol for pain, and she was up and playing by that evening. The biggest risk in this surgery is drilling too far and leaking brain fluid but that is extremely rare and these doctors have performed this surgery numerous times. Not to mention they have exact dimensions of the thickness of her skull. Sounds scary, but not gonna happen.
Going back to school with a bandage on her head? Eventually getting her ear and showing up at school suddenly with an ear? Having to answer all the questions? That's where this is going to be really hard. Yes, she's excited but this is going to be an emotional journey for her, without a doubt.
Sometimes I wonder if my Mom role of psychologist is enough to get us through these things. But then I look at how strong, how brave, how patient, how courageous, how tough she is. And I realize it doesn't matter what I do or what I say...she is who she is. And who she is is an amazing little girl.
