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.

It has been awhile...

It has been awhile. And I'd like to say that is because I haven't needed to write, but I would be lying. I've started a new blog about ten different times since I last posted. But my words come from my heart when I write, and my heart has been jumbled.

The last half of 2015 and all of 2016 just sucked. Looking back, I truly think this period has been the worst of this entire journey. And I don't say this lightly, seeing as I've watched my child die and be brought back to life, I've watched her suffer through drug withdrawal similar to what a heroin user has to endure, I've watched her have to learn to walk, talk, and eat again, I've watched her fight for her life while on life support, I've watched her climb back from the edge multiple times.

But as much as all of that hurt me to watch, hurt me to wonder, hurt me to endure...she didn't know. She was young, she was drugged, she doesn't remember. For several years after the dying episode, which took so many drugs to keep her calm and sedated for 6 more days, she would cry out in her sleep, "Let me wake up! I want to wake up!" But consciously, she remembered nothing, she remembers nothing. However, I can assure you that it is forever etched into my brain, every minute of it.

But now. Now she is 14. She is aware. Of everything that she has endured, of the unfairness of it all, of how different her life is from her peers. Emergency brain surgery, the recovery from hell. And I mean the depths of hell. 37% lung function, spinal fusion with a brain still trying to heal. An infection, a second spinal surgery, IV antibiotics, oral antibiotics for almost a year. And still no improvement in lung function. Constant back pain.

You all know what it is like when you have an infection. You're tired, worn out. It takes all you have for your body to fight the infection. Some of you know what it is like to not be able to breathe well, whether from a lung infection, asthma, etc. You're tired, worn out. It takes all you have for your body to focus on breathing. And some of you know what it is like to live in constant pain (I know this one myself). You're tired, worn out. It takes all you have for your body to function through the pain.

Now. Imagine. All. Three. At. Once. Every single day of your life. Throw in that your brain still needs a lost of rest itself. And still having to live life - go to school, do homework, have a social life. I honestly don't know how she does it. There are days that my pain keeps me on the couch. On a normal day, my body is often so worn out by 5pm that it is hard to even walk to the mailbox or let the pups out. She is often right beside me, but she handles it far better than I ever will.

All the physical stuff aside, there is another huge component that I don't want to be overlooked. The emotional and mental well-being of those affected. I can say this with extreme confidence from the last year a half, from both my perspective and Kennedy's - MEDICAL PTSD IS REAL. For Kennedy, this manifests in needing to sit beside me every night on the couch. She has a hard time when she's home and I'm not, even if others are with her. For a long while, she had a hard time being away from home at all; thankfully her awesome friends and their parents helped get her over this hurdle. Doctor appointments are anxiety-producing because she's just waiting for the next piece of bad news (like the surgery she must have at the end of this month). She doesn't like to talk about any of it, hates reminders about what she's been through recently.

For me, it manifests in different ways. Depression, flashbacks, tears, panic attacks, nightmares. Living through it all was just survival. Thinking back and remembering provides a perspective that isn't always positive. Watching her fight her own PTSD demons breaks my heart. It doesn't help that I lost my four-legged therapist in the middle of all the chaos.

But if anything, we are survivors. We roll out of bed each day and live life. We declared 2017 our year, and although she already has a surgery on the books, we hope that it will be one that points us in the right direction. If nothing else, getting back underwater in February with our scuba angels was nothing but amazing for her. I truly think she finds peace 60 feet down. And the promise of even better diving on the horizon is helping her look ahead, instead of getting stuck on the here and now.

So yes, my heart has been jumbled. Words have been hard. Memories even harder. Life still isn't easy, although we're all hoping that really is light at the end of the tunnel that we're seeing.

37%

Put yourself back in high school algebra class. You just took a test and are about to get your grade. There was no extra credit, so you know the highest possible grade is 100%. You sit there anxiously waiting for your test to be handed back to you. Mr. Hendershott (those from my hometown will appreciate this reference) stops in front of your desk and hands it back to you and you see in big red numbers at the top...37%. Your heart sinks. Your stomach knots. You felt that you did okay on it, that it wasn't that hard to get through. But you didn't even get half of the questions correct. You didn't even get a "high" F, not even close to passing with a D. Thirty-seven percent.

Now, remove yourself from Mr. Hendershott's class (I know friends, we all hated to see that class end) and place yourself in a doctor's office. And that 37% that is being thrown your way describes your child's lung function. You know, those two organs that are needed to keep you alive, the ones that breathe for you? Let's think that if each work at 50% to give you 100% lung function, she doesn't even have the equivalent of one working lung.

You are sitting in that doctor's office, listening to this. But you have hope. Because this low lung function could be a result of Chiari Malformation. So your child undergoes urgent brain surgery. Three months later, you are given the same number. So surgery for Chiari didn't help improve it any. But you have hope. Because this low lung function could be the result of scoliosis (which most likely worsened due to Chiari). So your child undergoes urgent spinal fusion.

And four months later, you are given the same number. And the hope is gone. You are told to be thankful that it has remained stable and not decreased any further. You are told that your new hope is that the spinal fusion was enough to stabilize the lung function for years to come. You are told that 37% is your new normal, a normal that you need to pray with all your might does not slip any further.

Your heart sinks. Your stomach knots.

For the last two weeks, since hearing the new normal, I've been trying to put myself into Kennedy's shoes. Lord knows I'm out of shape and get out of breath easily. But my lungs fully function. They didn't always though and I remember how tired I was when my asthma would flare. How much I hated that feeling of not breathing fully and completely. How often I just wanted to do nothing because my energy was drained. And I think about her with only 37% lung function. And Chiari on top of this. And recovering from 3 major surgeries in the last 9 months and an ongoing infection. I don't know how she does the stuff she does. I don't know how she functions. I honestly don't know.

And I'm learning how to function as the mom of a child with 37% lung function. How to decipher lazy vs. warn out. How to notice when she's struggling, when she's pushing too much. How to push her but not over-push her. How to let her learn this new normal on her own terms. How to help her come to terms with being tired, a lot. How to help her not to focus on what could be in the future. And I'm not gonna lie...it isn't easy. Every parent will say that one of the things they hate the most is seeing their child sick or struggling, and not being able to do anything about it. This is my everyday. But my lungs fully function, so I have the good end of it.

The saving grace to all of this is that exercise does not decrease lung function, it does not damage the lungs. So we're one step closer to getting her back to scuba diving, where we're pretty sure she is breathing better than she does on land.

We don't know what the future will bring. A 3D surgery to help expand her rib cage? An oxygen machine? A vent? A shorter life span? Absolutely nothing more than what we're doing now? No one knows. Only time will tell. And until then, we will not dwell on it. Well, maybe I will just a little. Because I'm the mom and that's my job. That and praying and hoping that 37% always stays 37%.

Closing A Chapter...

As we say goodbye to the middle school years and look forward to a new milestone - high school - I can't help but to reflect back on this part of Kennedy's journey. I remember being so sick about her starting middle school...we had already lived those awful years with one child and I think we can all remember our own middle school years. Kids are mean, nasty, drama-filled...UGH. We had already dealt with a bully at elementary and I was so afraid that middle school was going to be hell for Kennedy. At orientation, the first time wearing her new ear out in public, it fell off when she turned her head toward a friend and as she stuffed it in my purse and went on her way to the events of the day, I went home and cried. I imagined it falling off constantly, her being made fun of it for it, someone pulling it off on purpose, maybe even stealing it for a mean joke. Little did I know that bullying and the social aspect of middle school was the last thing I had to worry about.

It helped that over half the kids she was entering with knew her or knew of her from elementary school. But Kennedy thrived. From Day 1. She proved me wrong and she truly shined throughout. She made new friends each year, she deepened relationships with her old friends, she stayed out of drama. I would hear kids I've never seen before greet her in the morning, bid her farewell in the afternoon, give her hugs (which I'm sure she just loved, the hugger that she is). I needed not to worry at all about her in this regard.

Nor did I need to worry about academics. Kennedy went through elementary school doing her homework without me telling her to, getting projects done on time and without help, being the model student without any help from me. Seriously, I was the parent who had no idea there was a math test or a presentation because she handled it on her own - by choice - and apparently did a damn good job at it. This continued this throughout middle school, as can be seen by her All As in 6th, 7th, and 8th Grades Award she received earlier this week. If ever there is one thing I'm thankful for in her life, it is that she is smart and doesn't struggle on this side of things. I know it could easily have been the opposite.

But good grief has the medical journey been a bitch in middle school. Sixth grade brought the flu, twice. She struggled with Type A in January/February and Type B in March/April. And Kennedy doesn't just get the flu. It comes with pneumonia and sinus infections and it lasts for weeks. Literally, weeks. She missed 20+ days of 6th grade. Seventh grade brought surgery, which we thought would be somewhat minor. Guess again. SMILE surgery stage 1 ended up being more major than we thought. And she pushed herself to go back to soon, which knocked her back a few rungs on the ladder. Then she woke up on January 1st at Disney with the flu, which knocked her out of school (and almost into the hospital) for more than 3 weeks with double pneumonia. With some other illnesses thrown in, she ended up missing 30+ days of seventh grade. Thank goodness for 504 Plans. And we won't even talk about the awful back brace that was introduced during the latter half of this year as her scoliosis was starting to destabilize again.

We were determined that 8th grade would be her year. HAHAHAHAHAHA! The universe sure set us straight, starting the first week of school. She went into it, fighting some headaches and getting extremely tired. We had just started seeing a chiropractor to improve some mobility issues and he took an x-ray the first week of school and brought Kennedy and I in to explain what we were seeing. And the bottom dropped out of my world. I didn't tell her, didn't mention a word. But I went home and cried. And then immediately sent a picture of the x-ray to her orthopedic surgeon and asked for his thoughts. He confirmed what I saw - the scoliosis had gotten soooo much worse in the past 4 months and her lung and heart were in jeopardy. Again. We were back to age 5 all over again, and that was a nightmare in and of itself. We knew to save her life, we would need to act fast. As he was not operating at that time, he sent us on to Duke. Magic was worked and we were seen right away. But the orthopedic surgeon knew that things weren't adding up and sent her on for more tests. Next came the devastating diagnosis of Chiari and Syrngomyelia, emergency brain surgery, a horrific recovery. We lost who Kennedy was for a good long while. In late January we were crushed again when we learned that the brain surgery did not help her 37% lung function, so her scoliosis was the fault instead of Chiari. So in March, came spinal fusion, nasty infection, a second clean-out surgery, IV antibiotics, and now oral for another year, which is when we'll decide if another surgery is required to remove the hardware from the fusion (which looks likely as of now). According to my count, she missed 72 days of 8th grade (school database count is in the mid-60s but we know now everyday was counted). That's over 40% of her 8th grade year. And the only positive thing I can say medically for this year is thank goodness she avoided the flu (which, with her lung function, could have easily killed her).

You know that I'm always waiting for the other shoe to drop. With Goldenhar, we've spent her whole life waiting. I think enough shoes dropped through middle school. Ironic for a child who literally only wears ONE pair of shoes until she needs a new pair.

To say I'm happy to bid farewell to middle school is an understatement. Although unlike some other parents, it isn't because middle school itself was a nightmare. It is a chapter we need to close. Maybe even burn.

But that's easier said than done, when my girl is still trying so hard to recover. To find her new normal. To learn to live with disorders that no one should have to. Disorders with no cures and no true relief. This past weekend, Kennedy talked her BFF into going on a ropes course with ziplining at the end. It was her attempt to convince Andrea that she wants to zipline with Kennedy on our cruise. She struggled; although admittedly so did Katie as it was difficult. She came her and joined us in the pool, only lying on a float. That's not my mermaid's MO in the pool. It reminded me of last summer, when her swimming activity raised red flags with me. By evening, she was sobbing and went to bed way before her normal schoolnight bedtime. It had just been too much for her. We've seen many days like this. Many tears. Many things just being too much.

So we close the middle school chapter. And we put the bookmark in and take a break this summer. We rest. We heal. Her mind, body, and especially her soul. And we pray that the next chapter, which we'll begin in August, is a much better chapter, a much healthier chapter, a much happier chapter, than this one has been.