To Pee or Not to Pee -- There is No Question

In the last hour I have read two very selfless, very giving stories of kidney donation. These stories not only amaze me, but also give me hope should we have to cross that bridge in the future. To know that there are such selfless people out there, people willing to go above and beyond for someone else in such a way.

One aspect of Kennedy's syndrome that doesn't get a lot of discussion is the fact that she was born with only one kidney. Her craniofacial syndrome can affect any organ system in her body, and most regularly affects the heart. So far, Kennedy's heart has been okay. But although a special Level II ultrasound showed two kidneys (or at least that's what the tech and radiologist claimed), Kennedy was born with only a single kidney. It is larger than the normal kidney and the placement is different than a left or right kidney would be. 

Thankfully, her kidney works, albeit different than yours and mine. Kennedy can go many, many hours (I'm talking like 10) before bathroom trips. She is not one that can go on a schedule and she cannot "try" as we all force our children to do before leaving the house or climbing in the car. When she has to pee, she has to pee. When she doesn't, she doesn't. Simple as that. 

All of the information you can find will tell you that those born with one kidney can live healthy, normal lives and most likely never have any kidney trouble. But you've also heard me say that we are always waiting for the other shoe to drop. That's the thing with her syndrome - their is no norm, anything could go haywire at anytime, and all of the information you can google doesn't necessarily apply. On top of that, Kennedy has a long history of high blood pressure issues on her maternal side (I've been on medication since I was in my late 20s), and high blood pressure doesn't play well with kidneys either. 

So bottom line is, we have to do everything we can to keep her kidney healthy. We have a kidney function test performed every year. We limit the salt in her diet. We very much limit her caffeine intake (Coke on special occasions only). We test for strep with every sore throat that lasts more than a day. We keep her away from those that have strep throat. We make sure she drinks lots of water. We don't let her play contact sports. We have a 504 Plan in place that provides her bathroom access as needed at school. We avoid ibuprofen and other NSAIDs, which break down in the kidneys. And this last one is not easy considering the pain that she is often in after surgery or with her back, not to mention all the high fevers with her flu bouts and sinus infections. 

And we hope that ever there comes a time when she needs a kidney, there is a selfless person willing to test for a match, and willing to donate. Her entire family is ready to donate one in a heartbeat, but we also know that it may not work out that way.  

So as I worry when I ask at 3pm if she's peed today and the answer is no, or as I worry because it is 3pm and she has peed 4 times already...these are the stories I need to keep that worry in check. I want her to live a long, healthy life with her own kidney. But if that other shoe drops and her kidney should fail, I need these stories to remind me that there are people in this world who go above and beyond. And although these stories were living donations, PLEASE BE AN ORGAN DONOR. Your kidney (or heart or eyes or lungs or etc.) will do you no good when you've left this earth but may just save a life. 

(and ps - if Kennedy reads this one she may just kill me :) )

Welcomed with Open Arms

Let's start at the very beginning, a very good place to start. The short version is Kennedy was named Children's Miracle Network Hospitals Champion for NC. During an interview she said she wants to learn how to scuba dive someday. Air Hogs Scuba of Clayton NC learned of this and reached out to us. Air Hogs worked with Kennedy to overcome all of her medical obstacles and certified her in October of 2014 as a scuba diver. Kennedy was ecstatic.

It could have ended there. They could have said it was great to meet you, good luck, and sent her on her way. But they didn't. Instead, they have given Kennedy opportunities that I never could. They have become friends and have introduced us to more new friends. They have and continue to assist her follow her dreams. They have welcomed her with open arms.

I'll be the first to admit that I know nothing about scuba diving, other than anyone who does it is quite possibly nuts. And I mean that in the sincerest way. I don't know the terms, I don't know the gear, and I don't know what possesses people, including my daughter, to want to do it. Before all of this, I had no idea that there was a dive community per se, and what that actually means. But I'm learning quickly and to say that I'm impressed with these people would be an understatement (although I still think they are nuts). 

Three weeks ago, Kennedy was given the opportunity to visit the Florida springs area and dive in natural springs. Up to that point, she had only been in a pool and lake so this was a big step for her (and me). She was excited but nervous. It was her first dive since October and she was rusty on her training. But she did it and she loved it. She got to explore a cavern with one of the most famous cave divers. She got to dive with her first female instructor. She got to see crystal clear water, play in the spring turbulence, experience duckweed (um, yuck). And she absolutely loved it. 

What I loved about it? These amazing people. They invited us down. They made the dive plans. They took the time to dive with Kennedy. They accepted Kennedy for who she was and just made sure she had a great time (and that she was safe!). And this last one is huge to me. Those close to Kennedy sometimes have a hard time understanding the Kennedy they see regularly to the Kennedy who struggles in social situations with new people. Although she has come a looooong way, she is still shy with new people and in new situations. I think some people see this as her being rude or disrespectful sometimes, but I assure you that isn't the case. With all that she goes through, with all the times she has been made fun of or laughed at or pointed at, socializing is not her strong-suit. She has a hard time looking people she doesn't know well in the eye and she sometimes gets tongue-tied and has trouble carrying on conversations in social situations with others besides friends and family. We're working on this but it is a process. The thing is, these amazing people looked past all of that. They went out of their way to make sure she had an amazing experience. I just hope they understand how huge that was, how much it meant to Kennedy. By the end of the trip, Kennedy was opening up to Bre and that touched my heart...I think Kennedy finally felt secure in finding that female diving role model. 

For this weekend, we sincerely thank Lamar Hires from Dive Rite and John McCain and Bre Grant from Narked Scuba. And we thank Peter Lapin for his amazing photography of the trip. You all welcomed Kennedy (and us) with open arms. 

Last week, Kennedy was provided the opportunity to visit Florida again, this time on the ocean. We spent Friday morning touring SDI and meeting the awesome folks that helped make the trip happen. Saturday morning, Kennedy was joined by many from SDI for a dive under the Blue Heron Bridge, where she got to swim with octopuses, seahorses, starfishes, and many other marine critters. In addition to giving Kennedy a wetsuit to call her own and having us over for dinner, Peter (and Christy) of Stuart Scuba also gave us his dive boat and crew on Sunday to allow Kennedy to dive out in the deep. Joined by Thomas, Jon, and Lauren she didn't meet up with any of her beloved sharks but got to see plenty of other marine life, including grouper that were larger than her. As if she wasn't hooked before, this trip sent her over the edge. 

What I loved about it? These amazing people. They spent their weekend watching my girl chase her dreams. They went above and beyond. And again, they accepted her for who she is. And again, I hope they know what this meant to her, how much she loved it. This opportunity opened her eyes to a whole new world, one that she instantly fell in love with. And now that Lauren has entered our life, Kennedy has two female diving role models. 

For this weekend, we sincerely thank all of those at SDI including Brian and Stephanie Carney, Sean Harrison, and Jon and Lauren Kieren. We thank Peter Friedman and Christy Campbell of Stuart Scuba. And we thank Peter Lapin for making the trek over to once again capture Kennedy's experience under the water. You all welcomed Kennedy (and us) with open arms.

Our entrance into the dive community/world so far has been more than I could have ever imagined. The people have been amazing, their generosity has been amazing, their friendship is going to be amazing. Not only did they spend these weekends with us, but they all sincerely invited us back. And we plan to take them up on that. Everyone literally welcomed us with open arms. 

For all of this, we sincerely thank Thomas Powell, Josh Norris, Ray Wickham, and all the others at Air Hogs Scuba. 

The Beautiful Thing Is, She Talks

I was sitting at the dinner table last night, listening to Kennedy talk. Yes, we sit at the dinner table. I have always been a firm believer of this concept, which I have my own parents to thank. From birth, my girls have sat at the table for dinner with us, eating what we eat once they were old enough, and spending time as a whole family. Sometimes a lot is said and sometimes it is pretty quiet. But I digress.

I was sitting at the dinner table, listening to Kennedy talk. Most of you probably think Kennedy is on the shy side. And outside of our home, outside of our family, she is (although she's come a LONG way). But when Kennedy is comfortable and in a talking mood, those close to her will tell you that it is hard to get her to be quiet. And she's like her Dad - telling long stories with details that just don't matter. There are times we all (sadly) tune her out till she gets to her point. And honestly, I don't even remember what she was talking about last night. I wasn't listening to her story, but I was listening to the words.

Kennedy has multiple whammies against her when it comes to speech. She has facial paralysis. She has palate paralysis. She may have some other paralysis of sorts within her mouth and throat that we aren't sure about and she wouldn't know the difference to tell us. She has floppy vocal cords. She has constant sinus drainage. She could not hear well for her first three years of life when speech was ramping up. She hears herself differently than you and I hear ourselves because of her severe hearing loss and use of BAHA (which as a side note, if you talk close to you will hear your own voice echo within her head...pretty freaky phenomenon).

But the beautiful thing is, she talks. And most people can understand her, although that always hasn't been the case. And she has come so far.

For the first few years of life, only those around her on a daily basis could understand what she was saying. We had to do a lot of interpreting for others. Then we started a preschool speech therapy program offered by our local school system. There we met Ms. Ortosky (who is a Team Kennedy follower!), who will ever hold a very special place in my heart and although she doesn't wear a white coat like our other angels, she is considered one of our angels nevertheless. Ms. Ortosky worked with Kennedy for two years and made strides with her speech that we never thought would be possible. The day she conquered the "s" sound, I cried like a baby in the hallway (where I sat during sessions) while Ms. Ortosky celebrated with Kennedy in their room.

We unfortunately graduated from preschool speech and entered the world of elementary speech therapy. Private speech therapy agencies had atmospheres that were too much like a doctor's office and were not a good fit for Kennedy so we were limited to what was offered in the schools. In her six elementary years, Kennedy went through three speech therapists. The last one made some other big strides like the "sh" sound and the "r" sound in certain letter combinations. And then in fifth grade it was decided that the social non-acceptance of speech therapy from peers (more on this soon) was far more detrimental than any further success that the therapy could provide Kennedy, so we exited from speech services.

Almost thirteen years later, speech doesn't come easy for Kennedy. She still struggles with the paralysis issue and she doesn't sound like others when she talks. She gets lazy with certain sounds if she doesn't pay attention. When she is sick or really tired, she slurs a lot of her speech and even I have a hard time understanding her. She still has issues with some of the sounds -- "r" is a super-tricky one for her when it falls in certain places within a word. The "str" takes a lot of thinking on her part...the "t" often gets left out of such words. You and I speak and never think about it...it is second nature for Kennedy to think about how she speaks.

What I'm most proud of is that she doesn't let this bother her. I know she gets made fun of at times because of the way she says certain words or how she sounds in general when she talks. I know she gets irritated at me when I point something out and remind her how it should be said (this is done sparingly and in a loving way folks, only as a gentle reminder). I know she gets too tired and feels too crappy at times to even try. But she keeps talking. To everyone. And if she needs to, she repeats something. As many times as someone needs her to (she may spell it out if she gets irritated enough).

You know I'm all about acceptance for those who look different. Know that I'm also all about acceptance for those who sound different. Kennedy will forever work on her speech but she will never sound like most people when she talks. Too many whammies out of her control. Let's try to teach our kids that speech isn't a given for everyone. And not everyone who can talk, sounds like you or I. And it is okay for kids to attend speech therapy in school and this is not a reason to make fun of someone.

But the beautiful thing is, she talks.

The Other Shoe

Once upon a time, I had to make a life or death decision for my baby girl. Between her scoliosis and Thoracic Insufficiency Syndrome (TIS), she was going to die sooner rather than later if we didn't take action. With her syndrome, skeletal issues had plagued her since birth. At age three, we were told that the time was coming to make a decision. By age four and a half, we were told we were almost out of time. Her rib cage on the left side was not growing, her heart and her lung were being squeezed, and before long they wouldn't be able to work any longer. She had already started fighting life-threatening pneumonia infections due to decreased lung capacity, even ending up in the hospital on her first trip to Disney World. She was having trouble keeping up with her peers. Yes, it was time.

Kennedy's orthopedic surgeon was the first doctor in the state of North Carolina to be approved to implant the VEPTR, a titanium rib. She was the perfect candidate so a date was set. A month after turning five, I kissed my baby as she drifted off in the operating room. Her doctor implanted 2 VEPTR rods, one against her spine that would help with scoliosis and one further out, that would be used to stretch her rib cage.

The plan was to keep her on life support in a medicated coma for three days, for pain relief. She was young, this was a painful surgery. So we waited. We kept vigil. And we were more than ready when it was time to pull her out of the coma. Ryan and I were in the room as they pulled her off sedation and removed the ventilator. But our joy soon turned to despair. As the tube was pulled out, her throat immediately swelled shut behind it. She coded and we watched our baby die right in front of us. This sweet little girl with her blonde braids convulsing on the bed, with blood filling the mask as they tried to bag her. Her lungs were pulling blood from everywhere they could to try and breathe again. Numbers reaching zero, machines screeching. Every sight, every sound - burned into my memory forever. After what seemed like an eternity, the PICU doctor was able to intubate her again, despite the swelling. Her stats slowly crept up. And we waited another six long days to try it again. Six days of setbacks, six days of heavy sedation meds, six days of infection, six days of not knowing if brain damage was suffered. Nine days after surgery, she was extubated successfully. She suffered drug withdrawal like a heroin addict. She had to learn how to walk, talk, and eat again. She spent two more weeks in the hospital. She went through two more surgeries - one to fix a broken spinal rod and another to remove the spinal rod. The rod to stretch her rib cage worked great and several other surgeries followed over the next few years to stretch her rib cage.

And it worked. Her rib cage was stretched and stretched and her heart and her lung were given room to grow and to work. it also helped stabilize her spine/scoliosis. Several years later, her rib cage was growing on its own and her spinal curve was holding steady and the decision was made to remove the VEPTR. For five years the VEPTR did its job, but Kennedy's rib cage was finally doing what it should have been doing all along -- growing. And removal of the VEPTR meant fewer surgeries (to expand it to match the growing rib cage) and the ceasing of trigger migraines, an issue that plagued her with any sudden movement like a sneeze.

And here we are three years later. For reasons unknown, Kennedy's rib cage has slowed (or stopped?) growing on its own. The rib cage has multiple important jobs and one is to support the spine. Since growth is not happening, her spine is twisting. Since her spine is twisting, her good shoulder blade is shifting. And she would kill me if she read this, but it is also affecting her development in the front. Her skeletal system is slowly failing her.

I think she's most upset about having to wear a brace. It will be big, it will be uncomfortable, it will be a pain in the ass. She is focused on the here and now. But I'm most upset about not knowing. Not knowing whether the brace will help. Not knowing what her spine will do in the years to come. Not knowing if her rib cage has stopped growing completely. Not knowing if we're going to be facing life and death TIS decisions again. Not knowing what surgeries and other treatments she may be facing in the future. Not knowing how her heart and lung are going to fare. Not knowing why once again we're back here.

I always say that with her syndrome, I'm forever waiting for the other shoe to drop. I'm afraid that shoe is about to fall. And I can't stop it. No matter how tight I tie those strings. And as a mom, this is truly the worst feeling in the world.

Wonder: An Opportunity to Raise Awareness

Wonder, by RJ Palacio. If you haven't read it yet you should. No matter how old you are. This fiction book is about a little boy with a craniofacial syndrome; it gives a good picture into this little boy's life and the challenges that he faces, including bullying.

Kennedy's 7th grade is currently reading this book. Her very sweet language arts teacher asked if Kennedy would like to share anything with the class about her experiences, even if she just wanted to write something and have her teacher read it. She immediately said no. But after thinking about it for awhile, she agreed that it was a good opportunity to raise awareness of craniofacial syndromes. So we sat down and wrote this together.

"Like Auggie, I was born with a craniofacial syndrome. Mine is called Goldenhar Syndrome and it is a complicated syndrome. As part of this syndrome, I was born with only one kidney, I have scoliosis (curving) of the spine, I have thoracic insufficiency syndrome (where my rib cage doesn’t grow right and squeezes my lung and heart), I can only hear with a hearing aid, I am blind in my right eye, my right jaw is short, I have paralysis on the right side of my face and in my mouth, and I was born without an ear. So far, I have had 19 surgeries – to stretch my rib cage to give my lung and heart room to grow, to fix my spine, to put a hearing aid into my skull, to try and reconstruct my ear and when that didn’t work, to put a bar in my skull so I can wear my prosthetic ear. My 20^th surgery will be to fix my facial paralysis and help my smile be more equal. Surgeries are never easy and usually mean infections and allergic reactions and hospital stays. But I’m lucky to have great doctors who try to help me be who I want to be and try to help me have the best life I can have.  

What I want everyone to know is that what’s on the outside isn’t what matters. We are all different, we are all unique in some way. You shouldn’t stare at, point at, or make fun of someone who looks different. Or talks different. Or hears different. Or is different in some other way. You should never judge anyone because of their differences. And if you see others do this, help teach them the right thing to do. Syndromes like this do not define Auggie or myself. But they do make us stronger!"

Today, Kennedy's teacher read her story as part of a non-fiction connection lesson (connecting non-fiction text with the fiction text in the book). I received this sweet note from her this afternoon: Students were enthralled with Kennedy's paper.  Friend 1 and Friend 2 (each in separate classes) each guessed it was Kennedy but quickly caught my eye and kept it quiet. The kids were in awe of how much this person had been through, how positive they were and how strong.  They were all in shock when they found out it was Kennedy.  Some didn't realize Kennedy had "problems".  Some never heard her complain so they assumed she was never in pain or had concerns.  They all felt that they were helping her by not giving her medical issues any attention, but now they want to be more supportive.  Please do let me know if Kennedy has further surgery or is hospitalized or could use our support in any way.   I hope Kennedy knows she has a huge support system here and she needs to use it. Please thank her for me....thank her for being so candid and for being her.  

My point in sharing is to raise more awareness. I know many schools are incorporating this book into their curriculum. If your child or child's teacher would like to learn more about Kennedy and incorporate her real story into the lesson, we'd be happy to be included. If you are a teacher, we encourage you to read this with your students. And if you're parent, whether your child is reading this in school or not, we encourage you to read it with your child and discuss it in real terms. Don't hesitate if we can help in any way to make this real! To Kennedy, this story is real..,she lives it. Awareness and acceptance...pass it on!

The Trip of a Lifetime

The trip of a lifetime. We all say it. Most of us probably mean it. But until last week, I had no true idea what a trip of a lifetime was. I've been trying to write this post for days, only to realize every time that I simply cannot put into words what transpired, the emotions that were felt, and what it meant to me. I can promise you that this blog won't do it justice.

Amazing. Incredible. Unbelievable. I mean, how do you  describe what Children's Miracle Network Hospitals did for these Champions (with the help of Delta, Marriott, and many other sponsors)? But you know what was even more amazing than the trip itself? The Champions. WOW. Every story is different, every story is awe-inspiring. And the little blurb about each Champion that is included on the CMNH website or in the Champion booklets they gave us? Doesn't do justice to a single one of these kiddos. Each and every single one of them was a Champion. A hero. An inspiration. They have fought wars, received battle scars, and a lot are still fighting to win. They are strong, brave, beautiful. They are sweet, loving, funny. Some are outgoing, some are shy (I'm not naming names). Some loved the limelight, some were overwhelmed by it all (again, not naming names!) and took awhile to find their place. But they all loved their week.

I have to admit (here comes the heavy stuff)...one thing I wrestled with internally all week is whether we deserved to be there. The thing is, I KNOW in my heart that Kennedy deserved to be there. But hearing the other stories, seeing the other wars. Did hers even compare? So there was a lot of reminding myself that no one was comparing. That every child has a different story and every child deserved to be there. That she has been through so much on this journey (for my new readers: 19 surgeries, 2 stints on life support, dying once, life-threatening conditions, life-threatening infections, scoliosis and other skeletal issues, daily afflictions like hearing, sight, and speech, and a lot of going to hell and back over the last 12 years). That our friends at Duke Children's nominated her for a reason, that they find her and her story inspiring. That she is more than deserving of every good thing that comes her way, given all the bad that she's battled through.

Now let's talk a minute about the moms. I met so many FABULOUS moms over the week (and we all know that I am shy myself and this is never an easy thing for me!). Talk about Champions! Being a parent is not an easy job. Being the parent of a sick, injured, or medically-challenged child is definitely not an easy job. But these woman were amazing and deserved every good thing that came their way last week. And Chico's made sure that good things came our way...free clothes, bathrobe, jewelry and other accessories, hair and make-up, lunch and champagne. I think we all had to do some repacking to get it all home! Not to mention the mom video that Chico's sponsored (I shared on my personal page Monday). It was played during the medal ceremony in Orlando and I held the tears back till Kennedy appeared on the screen saying "My mom is my best friend." Um, how do I keep it together after that? Needless to say, I came away with so many friends, so many inspirations, so many other moms in my life who just get it. And we know that behind every inspiring child, is an awesome mom ;).

That doesn't mean that the dads aren't great too! And let's not forget about the siblings. I know Katie has had so many reasons to be jealous over the last 12 years, to feel left out. But she has been nothing but understanding and loving of her sister. I am forever thankful to her nursing professors, who realized this was too important to miss, more important than anything she could learn in class. And all of the siblings that I met last week? Nothing short of amazing. They have to be just as brave as their medical siblings and they each deserve a special award. Sometimes seeing these siblings love their Champion choked me up as much as the Champions themselves.

And oh my gosh, the opportunities. Meeting the First Lady and First Dogs. Getting to see parts of the Capitol that you don't see everyday. An awesome movie night. Spending Veteran's Day in our nation's capital and being there for the Concert for Valor honoring our vets. Being part of the wreath laying ceremony at Arlington. Treated to a charted flight by Delta to Orlando. A hero's welcome at every airport/hotel we arrived at. A medal ceremony with Marie Osmond, John Schneider, Nick Cannon, and Miss America. Being pampered at the moms' event. Meeting so many hospital partners and sponsors at the pin trading event (and seeing some of our favorite Duke peeps!). Character dinner with guest appearances by Lady Antebellum, Mickey, Minnie, Donald, Goofy, and Pluto. A private concert by Lady A and the opportunity to join them on stage. A free PlayStation 4. Serving as Grand Marshalls of the Magic Kingdom parade. Enjoying Mickey's Very Merry Christmas Party. And the only thing we had to worry about the entire week is to make sure we got to our next destination on time. Because that's how awesome CMNH is.

I know my little Champion loved her trip. And I'm so thankful that she was old enough to appreciate it all, even the little things. She may have been shy and overwhelmed and took awhile to feel comfortable, but she enjoyed it all. Even through the pain, which broke my heart. Talk about one of those mom guilt moments? Realizing too late that three weeks was not enough time to recover from the surgery you scheduled (at her request, but still). And only bringing Tylenol. Her poor little leg. It broke my heart watching her trying to have fun, but fighting through pain to do so. Thankfully the hotel in DC let us borrow a wheelchair to tackle the city. And by the time we hit Disney, she was beyond needing a wheelchair. Looking back at the pictures, I can tell that she was favoring her leg in almost every picture. And the thing is, she just suffered quietly. Like she always does, never wanting attention brought to herself. Like so many of the kids we spent the week with.

I think I ran the gamut of emotions. I can't think of one that didn't appear at one point or another during the week. I held back so many tears and let so many others fall. I met 65 heroes. Plus their hero moms, dads, and siblings. In one week. Who can say that? I mean truly, who can say that?

It was definitely, hands-down, without a doubt, the trip of a lifetime. 

The Tides Are Turning

Tides do what tides do, they turn. And as I was sitting on the beach this past weekend watching the tide do what it does, it made me realize that our own tides are turning.

For so long, I have been the decision-maker on this journey. I do the research, I make the appointments, I go over and over it in my head (then go over it one more time), I schedule the surgeries, yada, yada, yada. And those close to me know how hard some decisions have been for me. There have been sleepless nights, tears, cursing, dread, and just hate for the fact that I even have to make such decisions. But nonetheless, they had to be made and no one else was making them. The job of a mother, I know.

But little by little, that job is slowly being removed from my hands. With the first ear reconstruction, Kennedy started voicing her thoughts and opinions. She wanted to do it but she didn't technically make the decision.  By the time the second ear reconstruction rolled around, she was a little more in tune with the decision making process. We talked about it, I gave her the pros and cons (although let's face it, no one saw the ending coming), I gave her my thoughts and opinion, and she said yeah, let's do it. So after that disaster, I stepped  back. I had to for my own sake...the disappointment ended up on my shoulders whether it was my fault/decision or not. So Kennedy made the decision of a prosthetic ear on her own. And I was proud of her for making that decision, and would have been even if she had decided not to go that route. BUT, we were already so far down that road. She had been trying to get an ear for so long that it wasn't that difficult of a decision to make. Sure, she needed time to heal from the physical and emotional toll that two failed ear reconstructions took on her body and soul. Who wouldn't? But when she was able to see clearly again, she knew she was too close to throw it all away. So prosthetic ear we did.

So when spring rolled around and she asked for an appointment with her plastic surgeon, imagine my shock. Yes, you read that right...SHE ASKED. It wasn't something where I said, "Do you want to look more into this?" No, it was more like out of the blue clear sky, "Mom, can I go see Dr. Marcus?" And so we went. And at her request, he told her the process for removing the large mark on her cheek (most likely a type of mole but no one really knows other than a biopsy when it appeared years ago proved it wasn't cancer). He also told her all about SMILE surgery, which we've talked about before but never in detail and never at Kennedy's request. He sat with us for quite awhile and told her all the details. He had also written it all up and handed it to her as we left, knowing her and the fact that she would contemplate more once we left his office. Katie and I discussed SMILE surgery on the way home that day and we both thought it sounded amazing. There are two ways to accomplish it but essentially, it is taking a nerve and a muscle from the leg and implanting in the cheek. With some therapy and just everyday use, the nerve and muscle learn how to function relative to the opposite "working" side. It helps with facial paralysis, gives a more symmetrical smile, and perhaps can assist with speech issues. (please note that this is the shortest, most generic description of this surgery!) But then we never mentioned it again.

On our way home from helping with a project for Duke Children's last week, Kennedy let me know that she wanted me to schedule surgery - for removal of the mole and for the first stage of the two-stage SMILE approach. And there it was, the tides turning. This has been her decision from the beginning -- she asked for the appointment, she obviously gave it tons of thought, she made the decision. On her own. Without me. Without any advice from me other than knowing that in general, I find the surgery amazing.

Let me remind you that she is 12. And although someone made the comment on the Team Kennedy page a couple of weeks ago that allowing such a young, "not mature" child make such a decision was an awful parenting decision, I couldn't be more proud. When it comes down to it, this is HER life. This is HER face. This is HER self-esteem. This is HER decision. To some 12 may seem young to make such life-altering decisions. But Kennedy has been through more in her 12 years than most people have been through in their lifetime. She is no stranger to surgery and disappointment. And life-threatening infections. But this is what she wants. This is the path that she wants to take. This is her taking ownership of her syndrome. This is the tides turning.

And the thing is, she know I'm always there to help with these decisions if she wants my help. She knows some decisions - like whether she will need a spinal fusion in a few years - may be out of her hands. She knows that no matter what she decides, I will be there when she is put to sleep and I'll be there when she wakes. She knows I'll stand behind her 100%.

The tides are turning, but I know how to swim. I also know how to float. And boogie-board. And stay on shore. Whatever she needs me to do as she controls her own future, and she takes ownership (and kicks ass) of this thing we call Goldenhar.