For once...I can say that this was a good year!

Remember when you were younger and your parents would talk about how fast time flies, and you would roll your eyes because life literally dragged on forever? And now we sit here wishing time would just. slow. down.

Another year has come to an end, and for once I'm not swearing this one as it leaves us. It has been a number of years since I've been able to say this - but 2018 was a GOOD YEAR. No surgeries, no hospitalizations, no major illnesses. Will there ever be a time when these things don't define a good versus bad year? Because no matter what else happens, these are definitely the things that make this decision on this journey. 😟

We've had our downs...a cancelled scuba trip due to illness, more skeletal movement, return of some headaches and hot flashes, an exhausting and stressful first semester of junior year, and an ongoing brain battle with a new BAHA.

But in the grand scheme of things, our downs have been minor and far out-shadowed by our ups...a Sweet 16, a short dive trip, a Spring Break cruise with great friends, a new puppy, a week at the lake, a trip with Ryan's family to Gatlinburg then on to Atlanta to visit Katie, ten days in Hawaii celebrating my parents' 50th anniversary, a couple of weeks at the beach with different friends and family, a scuba trip to the Keys, a successful Dig for Duke (Duke Children's fundraiser), induction into the National Honor Society, a weekend in the mountains, a new car which finally led to a driver's license, hurricane parties and snow days with friends, coaching for Miracle League, many boat days, and lots of time with friends and family and puppies.

We don't always know what the next year will bring in its entirety, so as always we enter with a little trepidation. Lung function tests in January will determine whether we can continue pushing out a very painful and complex spine/scapula/rib cage surgery. I'm afraid a sleep study is also going to be required and I won't be surprised if the results warrant some type of breathing aid while sleeping, something we hoped wouldn't happen for years. Eye muscle surgery will be scheduled for the first part of the year...this is elective and 100% her decision. Wisdom teeth will have to be removed in the OR (this is not a trivial thing for a craniofacial kid). Maybe she'll even decide to finish her SMILE surgery (ha!)? And hope with all hope that she finds the courage to switch to her new BAHA, allowing her brain to relearn hearing. But as always, we will balance the bad with some good. A trip to visit my parents in the Keys, a rescheduled Disney trip, some beach weeks, some lake time, maybe some diving (scuba friends - hint, hint 😉), senior pictures (😲 good for me, but she would beg to differ), college visits, the start of her senior year, and whatever else we can fit in there.

So as we say goodbye to 2018, and usher in 2019, we do it with hope. Hope that this year is as good as the last. Hope that the worst years are behind us. Hope that life is as easy for Kennedy as it can be. Hope for happiness, health, and love. Hope...we hope you have it too.

No words needed...

Beauty comes in many shapes. Sometimes, the beauty is in the grace of how one conquers life. 

2018, we choose happiness

As I sit here and look back at 2017 in pictures, I am forever thankful for the life we have. It is not perfect, it is riddled with medical issues, and at times it is just damn hard. But it is full of love, family, friends, adventure, and memories. 

2017 meant surgery to remove spinal hardware and infection. We were on a cruise when we heard the words "infection-free" for the first time in more than a year. Celebration! We saw our Kennedy emerge again, after almost two years of watching her disappear on us. We saw her smile, we heard her laugh, we rolled our eyes at her sarcasm. 

2017 meant many opportunities to make memories - scuba diving with sharks, a cruise with a good friend, a lake weekend with awesome people, our annual family beach trip, a long weekend in NYC, more scuba diving, a couple of days at Disney, a trip to Europe (at least for Kennedy and Katie) with grandparents, a Christmas cruise with grandparents, a new boat purchase, and several other weekends spent with family and friends. On a certain June day in 2007, in the WakeMed ICU, Ryan and I decided that making memories was worth more than money in the bank and we do our best to make this happen for our girls. 

2017 meant moving Katie to Atlanta. We miss her and have hopes that someday she will be close again. But it just means more road trips until then! It also means Kennedy has her bathroom back to herself, which she is more than happy about.

2017 also meant more medical issues. Although removal of the spinal hardware meant no more infection, it was serving a function for her. We know that some of the fusion took, and other parts did not fuse at all. With this and the lack of hardware, everything is moving once again - her shoulders and blades, her rib cage (which is also twisting). Her "belly" is back as her organs are being pushed out once more because of the rib cage shifting. Her right eye, which was affected during brain surgery in 2015, got worse this year which means we won't lose the bangs in her face anytime soon. Between this and the constant new symptom of freezing cold hands, we will see neurosurgery in early 2018 to check brain pressures and syrinxes from her Chiari/Syringomyelia. At least we'll be able to see her spine in the MRI since there is no hardware blocking the view. 

We don't know yet what 2018 will bring. We know that at some point, a very difficult, complex, and painful surgery will be required. Whether that happens in this new year, or whether we can postpone it as long as humanly possible, will be determined by lung function tests at the end of January. Before this decision is made, a scuba trip will happen and we're hoping that kicks off what turns out to be an amazing year.

No matter what happens, we will choose happiness. Because happiness is a choice. And it is the only choice that makes sense. We hope that you all agree and choose happiness for your new year too. We all deserve it. 

Real Life, NOT Hollywood

I went to see Wonder today. It was hands-down the most brutal thing I've ever watched. Other than the real life version of it.

It was a beautiful movie. With beautiful and tremendous actors. Telling a beautiful story.

But for some, it is not a story. No actors. No set to arrive to every day to play the part. No hours of make-up to create a movie. No sad turned happy story. No going home and leaving it behind. REAL LIFE. And that's what I want people to know.

When you are watching it, remember that there are kids who go through this every single day of their life. Families who walk, and sometimes crawl, this journey sure as you breathe to live. Stares, pointing fingers, whispers, giggles. Looks of horror. Double and triple takes. Bullying. This is their every day life. Every. Single. Day.

We know. Because we are one of those families. I am Julia Roberts; minus the beauty and money, of course. The hospital bands. I KNOW that. Auggie walking into middle school for the first time, while mom watches with her heart in her throat. I KNOW that. Sitting alone at home eating lunch, not knowing how the first day of middle school was going. I KNOW that. Trying to calm a frantic Auggie without knowing what happened to upset him. I KNOW that. Trying to convince your child that he is beautiful when he clearly thinks otherwise. I KNOW that. Realizing you've had to put your other child on hold too many times. I KNOW that. Losing the dog that has been there for every illness and surgery. I KNOW that. The joy and relief to know your child has found a true friend. I KNOW that. Because this movie is our life.

The author of Wonder was in an ice cream shop with her two children. One started crying at the sight of a craniofacial child. To make the situation go away quickly, she gathered her boys and left. And she regretted that moment the whole way home. She hated that she didn't stop and introduce herself to the child and family, introduce her boys. She began writing Wonder that night. And by doing so, she opened up this life to you, to the world. She pulled on my heartstrings of awareness and acceptance. And I hope she will pull on yours.

If there is one thing I could change about the movie, and there is only one thing I could think of to change, it would be that they cast a craniofacial child to play Auggie. Because it would have made it even more real. Because make-up does not compare. Because there is a little boy somewhere that would have loved that opportunity. Regardless of my wish, Jacob rocked the role.

If you haven't seen it yet, go. Take your kids. Cry. Then talk. Guide them to be like Summer and Jack Will. And Andrea and Carson. And Maggie, Cameron, and Kylie. And Brad and Megan. And Riley and Morgan. Who all surrounded Kennedy today as she watched and cried. Teach them that this is not Hollywood. Teach them to accept. To look inside. To love. And to stand up. Because no matter how strong these kids are? They need their friends.

I was lucky enough to be in between two of my favorite ladies - one who has been on this journey with us since Kennedy was 2 and the other since first grade. And so many others were sending me love when they knew I would be falling apart. They were crying with me, and loving me during the hardest scenes. It was brutal, that's the word that comes to mind. I am emotionally drained and have nothing left. My discussion with Kennedy will happen later; we both need to process it more. We both need it to be less raw.

Wonder. This is real life. Our life.

Life ain't always beautiful...

Honestly, the picture could be my blog. Finished. Done.

When you've been there and back so many times, you lose track of which level you are on. And forget ever finding your car in the parking garage.

I see how tired she is. Not how tired she gets, she IS tired. I listen to her fight for breaths - I counted 48 in a minute earlier this evening. Fast, shallow breaths. It should be 12-20. So I tried 20 fast, shallow breaths and that was all I could manage of that kind of breathing...it was tiring. But this is her everyday, her every breath. And the more her skeleton moves, the worse that this gets.

And I see the physical appearance. This shouldn't matter, right? But it does. She's 15. She already has enough appearance-wise that draws undue attention...she doesn't want more. There is one word that I hate so much, I've hated it for 15 and a half years. When doctors say it, I stop them and give them an alternative. I asked for this word to be in her medical files as one that is not allowed to be said to her or about her. I cringe when I hear it anywhere. But now it is all I can think of when I see her back, her shoulders, her core. Deformed. And I hate myself for thinking it. What kind of mom outlaws a word and now it is the first word that comes to mind? But a word that is pure hatred to me is the best word to describe this current situation we are in. If you would see the pictures, I wonder how many would think of this horrendous word immediately.

When I went to Boston, I wasn't looking for more to be wrong. I wanted confirmation that the Duke doctor was right and that she's okay and waiting for four months, then six months, then so on was the way to handle this. But I knew. Just like I knew the minute I found out that I was pregnant that things were not okay. And all of the other mama gut moments I've had with her over the years.

In the end, this all comes back to me. I wanted a baby. And sometimes I feel so much guilt over that, I can hardly breathe. I've worked my ass off to give her the best life I possibly can. To make the best medical choices I can with the information I have at that moment. I have failed her many times. I have failed myself many times. Some days this journey truly sucks everything I have out of me. But I continue to fight for her life, just like she fights for every breath she takes. I go to hell and back with her every time, and I always will. No matter what level or which trip it might be.

Chiari, Goldenhar, Restrictive Lung Disease...complications from any of these could bring this journey to a devastating halt at any time. We've been warned by several that getting the flu right now could put her life in jeopardy. Although we can't dwell on any of this - we could walk out the door and get hit by an asteroid tomorrow too - a mama never completely loses sight of these things.

But we continue to try and choose happiness every day. We try to find the silver linings and hope for a pot of gold. Because we have to. How else could we go on every single day? Life ain't always beautiful, but it's a beautiful ride.

The last place I needed to be this week...

"Thank God that you have Him on your side. He will make it all well and she'll be okay in the end."

I went to church this weekend. Those who know me know that I do not like organized religion and will only find me in church for four different occasions:

1. Someone is getting married or someone died.
2. It is midnight on Christmas (the Midnight Mass at Catholic church is a tradition that I love).
3. I respect that my dad wishes his children went to church and go with him (mainly just to hear him sing in the choir).
4. I respect that both my father-in-law and brother-in-law are pastors and go if one of them is preaching.

I was raised Catholic and was expected to attend church every weekend. And I did, without too much complaining. And I attended lots of other churches too - with friends, with other family. But by the time I was in high school, and certainly in college and beyond, I recognized that organized religion - any kind of it - was not something that I wanted to be part of. This recognition only strengthens over time.

For those who do want to be part of it, I truly respect that. I respect those who find comfort in God, Jesus, Allah, Buddha, Spaghetti God (you know who you are) or any other deity that they worship and believe in. I respect those who go to church every weekend and find peace there. I respect those who love their church family as much as or more than their biological family. I respect those that pray for healing and peace and comfort. I respect those who pray for our family on this journey and I will accept any prayers said for us. This country was founded in freedom of religion, and I respect that.

And I respect those who do not believe in God or heaven or hell or religion. And I never assume that I know the beliefs or faith of anyone else. I recently read an article that noted "For those grieving without God...your non-religious path is every bit as valid and beautiful and true as those with a belief in God." And I couldn't agree more. They are not hurting more or in need of more prayer because they don't believe in a higher being, or know what that higher being might be. They do not need to be saved or converted or made to see the light. They need as much respect for their beliefs, than the person sitting next to you in church needs.

Very, very few people know what my true religious beliefs are, where my faith lies. For me, it is a personal matter and no one's business. I can tell you that they changed drastically 15.5 years ago and continue to change. I can tell you that with tomorrow's Duke appointment facing us (and then most likely a consult with Boston Children's), church was the last place I should have been on Sunday. The ocean is my place of peace and comfort. I pray to guardian angels. I don't believe in the platitudes of - if he brings you to it he will bring you through it, there is a reason that we just don't see yet, there's a bigger plan at work here, etc. And that's all you'll ever know.

So when someone said to me recently: "Thank God that you have Him on your side. He will make it all well and she'll be okay in the end," -- that it may be their belief that this is true, but it is not my belief. He cannot make it all well. We don't even know if a doctor can. No one knows that she will be okay. If we don't get her skeleton under control, it will kill her eventually. And the truth is, had I said this aloud, I would have been met with pity instead of respect. Which I do not need.

Choose kind. Love more, judge less.

(And obviously this is a recurring theme: https://anearforkgg.blogspot.com/2016/04/i-hate.html)

This Summer is Different

This summer is different.

Instead of sitting right next to me touching me in some way, she is sitting on the other side of the couch or even in a different room.

Instead of me insisting she make plans with a friend, she is making plans with friends then asking me if those plans are okay.

Instead of always having friends over here, she is off to their house for sleepovers.

Instead of going to bed at 9pm or sometimes before, she's staying up later than I can usually make it.

Instead of an empty pool, she's in it swimming and playing and splashing around.

Instead of me convincing her to go somewhere, she is asking to go places and to do things.

Instead of me forcing her to play cards to keep her Chiari brain focusing, she is asking to play cards.

Instead of never wanting to move, she is up and about and here and there.

Instead of wanting to rest and sleep, she is wanting to plan more and more summer stuff.

Instead of being so quiet, she is talking and laughing and joking and rolling her eyes.

Instead of being sick, she is healthy.

Instead of forcing herself to live, she is living.

This summer is different. This summer I have my girl back, albeit with a slightly new normal. She has color in her cheeks and energy in her soul. She is happy and light, and of course sarcastic. I wasn't sure I'd ever have this again. I know it might not last forever, so I'll take it while I have it. Thankfully, this summer is different.