Scars

The scars. They get to me. Each scar represents a battle, maybe more than one. Each scar represents pain. Each scar represents the unfairness. Most people will never see most of them. But I see them all. On a constant basis, I am reminded of her battles. I can't imagine the silent reminders that they are to her daily.

Ninety-nine percent of the time I can look at them and keep on with life. And then that one time comes when I look and the scars knock the wind right out of me.  Last night was one of those nights. I was changing the bandage on Kennedy's back as it was falling off. This time, the bottom layer of the bandage (that was protecting the actual incision) was loose and I got a good look at the incision. I lost my breath and tears forms immediately. Thankfully Kennedy was lying on her stomach and couldn't see my face, and thankfully I was able to pull it together till she got in the shower and I could let the tears flow.

Kennedy lost a good amount of skin during the last surgery, due to the infection. I honestly have no idea how they were able to sew her back up. She is pulled so tight, I have no idea how she moves without being in constant pain. Maybe she is, and just not admitting it. Or maybe she is and doesn't know it because she has lived most of her life in pain.

This scar ends one inch before her brain surgery scar begins. It is surrounded by other scars all over her back. One thing I realized last night was that almost every scar on her on her backside represents a life-saving surgery. Surgeries where there was no question. Surgeries that were urgent. Surgeries that were necessary. Surgeries that saved my baby's life. Inserting a titanium rod to stretch her rib cage, so her heart and her lung weren't being squeezed. Numerous rib cage stretching surgeries. Brain decompression to prevent paralysis and possibly worse. Spinal fusion to save her lungs. And although there is no scar, her T&A was considered life-saving as well.

And every scar not on her backside represents a surgery that improved my girl's quality of life. Her BAHA, which is her lifeline to the world. Chest scars in an effort to create an ear from her rib, twice. Scar tissue only remains from what should have been her own ear. Titanium bars to hold on a prosthetic ear. A mole that she hated removed. A nerve planted in her face to some day help with facial paralysis, completing her beautiful smile. And then there are the leg scars, where the facial nerve was removed (although on the back of her leg, this was quality, not life-saving).

Twenty-two times she has been scarred. Twenty-two different battles that she has fought, and won. Twenty-two reminders that life can be so unfair. Twenty-two scars that shape who she is.

They do not define her. They tell a story. They are a survivor's tale. They remind her of where she has been, but they do not dictate where she is going. They are beautiful. They are her.

I HATE

Y'all know writing is my catharsis on this journey. I often times delete these posts, when I'm in this current state of mind, but I decided to share this time.

I FUCKING hate Goldenhar Syndrome. And everything that comes with it or has come as a cause from it. I hate Chiari Malformation. I hate scoliosis. I hate decreased lung function. I hate speech problems. I hate facial paralysis. I hate hearing aids (no I don't...I love them. I hate hearing loss). I hate missing ears. I hate pain. I hate surgeries. I hate hospitals. I hate. I HATE, HATE, HATE with everything in my fucking being.

And you know what? I'm allowed to. Because I spend 95% of my life being happy. Finding silver linings. Embracing laughter and the lines that come with it. But the other 5% - I'm allowed to fucking hate.

Almost fourteen years on this journey and my hate only intensifies. The fucking universe is unfair and why my child has to be one to suffer, I do not know. But I hate it. I will be the first to tell you that my faith waivers at times and has for 14 years. I do not believe that these things happen for a reason, I do not believe that this was God's purpose or plan, and I do not believe that if God brought you to it, he will bring you through it. Because no God would "bring" this to a newborn baby and only make it worse and worse as her life goes on. Do not say these things to me and for the love of an all Holy God, do not say them to Kennedy. I will never tell others not to believe these things themselves, but thankfully we have the freedom of religious choice in the country (at least for now...) and our spiritual lives are ones that Kennedy and I usually keep private (only those living in her house know Kennedy's feelings on it all). Don't get me wrong - we will take all of the prayers that we can get. Pray in your own way. We need it all, we will take it all. I know words like these are said with good intentions but you have not walked our shoes and sometimes things like this can only make things more difficult to deal with.

This baby girl has been through some major shit in her short life. Tomorrow will be her 22nd fucking surgery. This is her whatever hospitalization. She is so fucking sick of being the 1%, the one in a million. Right now she is pissed off at the world and beyond, and has every right to be. I am for her. And for all the kids who go through this shit and worse. When do we catch a fucking break? WHEN?? When does she get to be a teenager and not worry about hearing aid batteries dying at sleepovers or in school, about a prosthetic ear falling off in PE class, about a hole left in her head from Chiari brain surgery, about constant pain in her back about worrying whether she'll pass out from not being able to breathe when she rides her bike, about the possibility of never scuba diving again? WHEN?? Never, that's when.

And who knows what is next. Who fucking knows. Because we live every day waiting for the other fucking shoe to drop. Every fucking day. Like today. How many fucking shoes are there? Do we ever run out of dropping shoes? Nope, never. Not in her lifetime. Because now we have to worry about lung function and whether she'll one day have to live on a vent. Whether she'll hit her head just right and have irreversible brain damage from no skull protection. Whether she'll go to bed one night and the Chiari doesn't let her wake the next morning. EVERY FUCKING DAY FOR THE REST OF HER LIFE.

So I HATE. And I will HATE a little bit every fucking day for the rest of MY life.

But you know what? She is the strongest person I know. She is a hero. She is my inspiration. She is my strength. She soldiers on. She quietly hates while I'm fucking off the entire universe (I've tried to get her to try my way but she won't - go figure). She doesn't pity (okay, maybe for 30 minutes today). She tries to move on and forget all the shoes that have dropped. She tries to fit in. She tries to be as normal as possible. But read my post from last night - her essay. Read between the lines. You'll see the pain that she quietly deals with. The invisible pain.

The fucking invisible pain (I needed one more F bomb to close, I felt like).