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.

I wouldn't trade it for anything. Or would I?

Since Kennedy was born, I gravitate towards special needs articles and blogs, whether they relate to our journey or not. Every special situation lends the opportunity to learn something new, to expand our thoughts, to grow. They are all good reminders that life can change in a heartbeat, that we should live in the moment, and that things could always be worse.

Lately, a common theme I've read in many articles and blogs has made me start pondering. I've seen many (not all!) writers declare they wouldn't change anything about their child or their situation. That it is what makes the child special. It is who the child is. They wouldn't be [FILL NAME] if they didn't have [FILL SPECIAL NEED]. And I get this. I really do. Kennedy has only been made stronger by all she has gone through. Her compassion for others' suffering has been intensified by all she has gone through. I could go on with the positives that we can attribute to this journey.

But if I could, would I trade it all in? Would I make Kennedy syndrome-free? Give her two (real) ears? Restored hearing? Sight in both eyes? Two kidneys? A straight spine and a rib cage that grows? Two shoulder blades that match and work the same way? Neck bones and muscles that work properly? Lung capacity of a normal 12 year old? Working facial muscles and a normal palate to assist with proper speech? A GI tract that works correctly? YOU BETCHA.

Am I bad mother for not embracing everything Kennedy is with a whole heart? For not accepting it all as a blessing? Don't get me wrong, I love my sweet Kennedy exactly how she is. She is perfect to me. And this journey has been amazing in many ways. But I see her face her medical struggles every single day. I see her:

- miss things that are being said because someone was on her right side and her left-sided hearing aid didn't pick it up or they were too far away (and then have people think she is rude and ignoring them!);
- get frustrated when someone, including the dog!, doesn't understand what she is trying to say because of her speech issues;
- get upset because she can't play most team sports like her friends, in an effort to keep her one kidney safe;
- fight pain on a regular basis from her neck/back/spine issues;
- struggle with dressing in a way that others won't think she has a "tummy" (most people don't realize this is actually her organs, pushed out due to her spine/rib cage issues);
- run out of breath faster than her friends because of her limited lung capacity;
- practice talking and smiling and making other faces in the mirror in an effort to try to gain any kind of control over the right side of her face and mouth;
- pretend she doesn't see people stare at her or point at her or whisper about her.

She faces each medical/physical challenge with grace and determination. She doesn't let it get her down or define who she is. But as her mother, I know it has to be exhausting at times. Heaven knows that it breaks my heart at times. And what worries me is that we don't know what is to come, what's around the next corner. If anything, we'll get through it. But I know it all takes a toll on that sweet girl's soul.

The bottom line is I have no idea who Kennedy would be if she weren't born with Goldenhar Syndrome and all that comes with it. Part of this journey has truly shaped who she is. But if I could make her syndrome-free, I would do it in a heartbeat. There are enough challenges in today's world for every kid. I only wish I could take some of these medical challenges away...

A Walk Down Memory Lane

I know you've all seen Kennedy's big news about being chosen to serve as North Carolina's 2014 Champion for the Children's Miracle Network Hospitals. She will be officially announced sometime in March and she is really excited for the upcoming year! As we embark on this amazing opportunity, and as we approach the dozen year mark of Kennedy's journey, I've been thinking back to all that she has gone through in her short lifetime. Let's take a walk down memory lane, a long walk over the last dozen years...

- Kennedy was born in May 2002. Within seconds we knew that things weren't right. Within hours we were given the diagnosis of Goldenhar Syndrome, had appointments set up at various clinics, and were brought up to speed on ALL the possible issues that she could face in her immediate and long-term future. By that night, a blue Kennedy was being rushed to the NICU where she would spend her first week of life, learning how to eat without choking. At two weeks old, Kennedy had her first major cold/sinus infection. We knew then that it was going to be a rough babyhood, filled with many illnesses and bumps in the road.

- At age 2, after two years of regular visits to a development clinic, Kennedy was cleared with no signs of mental/cognitive delays. Although rare with her craniofacial syndrome, the possibility exists. This was a huge weight off of our shoulders, as we knew the physical aspects of the condition were going to be aplenty. Age 2 also brought her first surgery. With her syndrome, Kennedy was born with no teeth enamel and it was wreaking havoc on her little baby teeth. She underwent surgery for multiple root canals, crowns, and other dental work. This was an eye-opener for us. Surgery was difficult. Recovery was difficult. And we ended up back in the ER the next day with a collapsed lung. We knew then that future surgeries were going to be scary. 

- Age 3 was a triple whammy. 1. We knew Kennedy was deaf on the right side at birth (she was born with no ear and the inner workings of that ear were not normal). But due to many, many ear infections in her first three years, it was determined that she had lost most hearing in her left ear as well. We were introduced to the world of hearing aids. 2. Kennedy also failed her eye exam. We were sent to a pediatric eye specialist and learned that the eye on her affected side never learned how to focus and she was essentially blind in that eye. We were introduced to the world of eye-patching as well as contact lenses (without an ear, she couldn't wear glasses). 3. The possible skeletal issues that can come with Goldenhar caught up with Kennedy full-force. She was diagnosed with kyphosis and scoliosis of the spine, as well as the beginning stages of Thoracic Insufficiency Syndrome (her left rib cage not growing properly and starting to squeeze her lung and heart). 

- Age 5 was another rough year. We reached a life or death point in our journey. Her rib cage was not growing, her lung and heart could not work properly. She was fighting major fatigue and numerous battles with pneumonia. Her heart was getting weaker. We had no choice, it was back to the OR. Kennedy became the first person in the state to receive the VEPTR, a titanium rib, to correct her scoliosis and to stretch her rib cage. Two VEPTRs were placed and she was kept on life support for three days to control pain. When they tried to take her off, she crashed and we watched her die in front of us. That image will remain with me forever. Luckily, we also watched her be brought back to life. Six more days on life support. Then learning how to eat again, talk again, walk again. Not to mention the serious drug withdrawal that she had to go through, like that of a serious heroin addict, due to all the sedation drugs. Then one of the titanium ribs broke off a piece of her spine so it was back to the OR for a fix. When it broke a second time, the second VEPTR was removed in yet another surgery. Almost a month later, we finally returned home to recover enough to start kindergarten. Unfortunately, we had started to battle sleep apnea by this time and by the end of age 5, we were making another life or death decision. Back to the OR for a T&A. A simple surgery? Never. Within 24 hours, Kennedy's lung had collapsed and she was once again on life support. This time for a week, and with a strep pneumonia infection to boot. 

- For the next two plus years, Kennedy would battle constant sinus infections, usually on a monthly basis. Now, sinus infections had been an issue since birth due to her very small and closed off sinus cavities, but this was ridiculous. So off we went in search of answers. By age 8, an immunologist/allergist finally figured out that the strep pneumonia infection had killed off every strep-pneumonia antibody in her body...and those antibodies are needed to fight off sinus infections. With one shot, we went from 12-15 sinus infections per year down to about two. What a relief!! In addition to battling the sinus infections, Kennedy also had multiple surgeries over these years to expand the VEPTR, and therefore her rib cage. Her heart and lung finally having room to work properly, she kept on keeping on. 

- Age 8 led us to our first elective surgery...YIKES! Talk about a nerve-wracking experience. At this point, we knew that it was extremely hard to intubate her. We knew it was equally hard to extubate her. We knew she was highly allergic to all tape and adhesive used during the surgery process and would have extreme allergic reactions. We knew any kind of surgery could go awry at any time for any reason. But we did it anyway. This time, to implant a titanium screw in her skull in order to receive a BAHA (bone-anchored hearing aid). Instead of hearing microphone-quality sound, she would be able to hear everything crystal clear via the technology of vibration. As much as I hated making the decision to have this surgery, it was by far the best decision I've made to date regarding Kennedy! :). Age 8 also brought us to our first ear reconstruction surgery. Unfortunately, an awful infection set in and ate through all the rib cartilage that was implanted to frame the new ear. That was our rock-bottom point. 

- Kennedy spent the rest of age 8 and some of age 9 healing both physically and emotionally from the failed reconstruction. We decided to try, try again. Three surgeries later, the new ear (Take 2) had to be removed in order to win the battle against a severe and dangerous MRSA infection. Ten days in the hospital, we left without an ear, again. As we were reeling from yet more disappointment, we received some good news/bad news on the rib cage front. Her rib cage was FINALLY growing on its own!!! So it was time to remove the VEPTR hardware (picture below)...which meant another surgery. But no matter, we were excited to get that metal out of her body!!!

- Things seemed to be going so well that Kennedy decided that she wanted to try the prosthetic ear route. So age 10 took her back to the OR a couple of times, for the implantation of titanium posts for the new ear. 

- And that brings us to age 11, which Kennedy is wrapping up in the next couple of months. We kicked off age 11 celebrating that we wouldn't see an OR this year and praying we wouldn't land a stay in the hospital. Kennedy received her ear last summer and is happy that part of her journey has ended. She loves it, as well as the fact that she can choose when or when not to wear it. And we've managed to stay out of the hospital (knock on wood!!). 

I would like to say that we're done, that the journey is over. That the rest of her years can be as easy as 11 has been. Although we've come to the end of some paths, there are still paths of the journey to travel. She has several more surgeries still out there on the table: Smile surgery to fix her facial paralysis (if Kennedy chooses), neck surgery (she has a lot of neck issues due to syndrome), spinal fusion (this is the scariest by far!), jaw surgery (which we're trying to avoid forever if we can), and orthodontic surgery of the lower jaw (just, ouch). And she will always endure hearing issues, sight issues, speech issues, back pain, skin infections around her surgery sites, skeletal issues, not to mention the special precautions she will always have to take to protect her one kidney. And the unsettling thing with craniofacial syndromes is...you never know when something new will manifest. So we keep living, praying that other shoe doesn't drop. 

It isn't what Kennedy has gone through that makes her my hero, my champion. But rather her courage, her strength, her grace that she exudes while going through life. Hers hasn't been easy at times, but never -not once - has she complained. She just keeps living, she does what she needs to do, she ignores the stares and whispers that her syndrome often cause, she continues to forge ahead creating her own path through life. She does it with spunk and attitude, with a smile on her face, as a happy child.

She is my inspiration. My hope is that she will inspire others as she makes her way down this new path of her journey. Because truly, she is a Champion.