An In-Between Realization

I've been trying for weeks to write the next promised blog "A Ten Day Ride on the Roller Coaster of Hell" but it is proving difficult. Every time I try, I end up in tears or near panic attack mode with the realization of how serious the situation was. I've been trying to figure out why it is bothering me so much now. Why now?

Unbeknownst to her, a friend (who is battling her own health issues) helped me realize the answer this evening by posting this picture on Facebook.



When I read it, I immediately equated it with Kennedy. Because when she cries, when she finally lets it all go, it is only after she's been holding it for so long, trying so hard to be brave. But the more I think about it, the more I realize that this answers my question "Why now?" I've been out of the moment for a couple of months now, I've had a chance to take a step away. I've heard loud and clear Kennedy's doctor's words that we should all be thankful that her new ear is the only thing we lost. During those hospital visits, I was focused on getting through the day, the hour, sometimes the minute. I was focused on Kennedy's well-being (not just physical, but equally mental and emotional). What I couldn't clearly see was the big picture.

Don't get me wrong, I cried. Many times. I mean, at one point someone got the chaplain involved after I lost it in the middle of the hallway (and I know those who know me best still laugh at this whole story!). There is no way to continually get bad news time and time again, day after day, and not lose it. But my tears were for the setbacks, the bad news of the hour. Because in that moment, a mother is not even entertaining the idea that MRSA can be a deadly infection.

So as I try to write about those ten days of hell, as I take myself back there, I'm now able to see the big picture. I am now able to see how easily the heartache we did live through could have been a devastating tragedy. And I am now seeing that in order to get through the toughest of moments, we are nothing but strong for too long.

Long story short, my point is that it is okay to cry. It is okay to cry for ourselves. It is okay to cry for those we love. It is okay to cry for strangers. It is okay to cry for nothing. It is okay to let our kids see us cry. It is okay to cry over major things. It is okay to cry over little things. It is okay to cry when you're happy. It is okay to cry when you're sad. It is okay to cry when you're angry. No matter what you're crying about, it is okay to cry. If the tears come, then they are meant to be and they should be shed. Because no matter what, crying is not a sign that we are weak. We truly have been strong for too long.

(I'm still working on my next promised blog, but it will take me a little longer than expected. Because I am taking the time to cry while I write it.)

Lucky 13

So once again on Friday, August 12th, one week after surgery, we're up and at the hospital by 6am. Since bandage removal was considered a procedure (as opposed to surgery), we were both allowed to be with her till she drifted off to sleep. What really got me that morning was that Kennedy was just as scared and nervous as she is on the day of a major surgery. And it hit me...I finally understood something she had said to me a couple of surgeries ago, something I didn't want to push at the time. This sweet child isn't nervous about surgery per se. Or even the pain she'll be in after. She's afraid of not waking up.

They say that the drugs used during surgery and to keep patients sedated are memory blockers. I've always doubted this. When Kennedy was five and had to be on life support for nine days, she often came barreling out of sedation bolting upright in her bed. You can't even begin to imagine the amount of sedation drugs necessary to keep a child under. They assured us every time she climbed her way out that it was something she wouldn't remember, that she would have no memories whatsoever. But for more than a year after that horrific month, she would cry out in her sleep saying "Let me wake up! I wanna wake up!" So yeah, she may not have memories of what was going on around her, and she may not remember any of that June, but she definitely had her own nightmares buried in there. Nightmares that still surface when she is about to be put to sleep.

Anywho, back to August 12th. Ryan and I waited out in the waiting room and were joined by Dr. Marcus a short time later. He said that for the most part things looked good, but...there was a black area that he didn't like. The skin graft seemed to not have taken and we needed to watch it closely and were possibly looking at  another skin graft. He hugged me, made an appointment for us to come back in on Monday, and we went back home.

We didn't tell Kennedy but she's perceptive and I think she knew it wasn't good news. Instead of sitting at home and sulking, we headed off to the beach for the day. The beach is my sanctuary, so it was exactly where I needed to be that day.

On Monday, Dr. Marcus unwrapped her head again and said that the black spot actually looked better. Looking at it, if this was better then I can't even imagine what it looked like when he unwrapped it a few days ago. Yikes. Since it seemed to heal some on its own, he decided to see what would happen if we gave it a few more days. So back we went on Thursday. And at that point, he said the words we didn't want to hear. There had been no improvement and in order to save it, he was going to have to do another skin graft. So surgery was scheduled for Monday, August 22nd. Surgery #13.

What I can't explain in words is how we all felt at this point. Kennedy started crying first. Followed by mom. Followed by me. I mean, when does this kid get a freakin' break? Why is life so unfair to her? People often say that it is harder for parents to watch their children go through tragedy than it is for the actual child. I can't say whether that is true or not, I'm not Kennedy and I don't know how it feels to be in her shoes. But I can tell you that it is damn hard to be her parent and watch her go through this journey. She didn't ask to be born, she didn't sign up for this life. She doesn't understand how cruel the world can be or why and that her mom only makes these decisions with her best interest in mind. And no matter what you say to convince me otherwise, she is a kid. How could she possibly understand why life is so unfair sometimes?

Sometimes all you can do is cry. Poor Dr. Marcus and his staff. They have literally seen me cry more than my best friends. I know by this point he must dread having me in his office! I'm pretty sure they restock the exam rooms with tissues on the days we're scheduled to be there.

And so on August 22nd, we're up and at the hospital by 6am. At this point, I've done this three times in the last two and half weeks and I'm over it. As is Kennedy. But sometimes you direct where the journey goes and sometimes the journey directs you where to go. We had no choice, there was no backing out at this point. So, full speed ahead Captain.

Some people think the number 13 is bad luck. I decided to join the other camp...that 13 is lucky. Because at this point, we couldn't possibly take more bad news. So I chose to believe that this Lucky 13 surgery was an omen...it was going to be our break. Surgery went well. He was able to take the skin graft from her head instead of having to move to her thigh or bottom. The head is much, much less painful than other graft sites. Of course, it also meant a loss of a lot of hair. Good thing she has a lot! Adding even more to my omen was that for the first time ever, Kennedy woke up from anesthesia with no tears. She was peaceful. That had to be a good sign, right? I've told you what recovery usually means for Kennedy.

We stayed  overnight just to be cautious and headed back home on Tuesday. This time, he forewent the huge bandage and placed a special ear cup on her ear with a strap that went under her chin. I'd like to say it was more pleasant that the large q'tip. But I can't lie on Kennedy's behalf. And so we were on our own till Thursday the 25th, when he would take his first look at the new skin graft. Oh, how we love the waiting game! And let me just add that yes, August 25th is the first day of school in the state of North Carolina. And this meant that my baby girl was missing the first day of fourth grade. And as much as she tried to say she didn't care, she takes after her dad and can't lie well.

Sitting in the clinic on Thursday, hearing the word PINK (not black!) was the break we were looking for. I've never liked the color pink until that August day. The new skin graft was taking and the ear was looking good. We were given all the supplies we needed for twice daily bandage changes and sent on our way for a whole week this time! And Kennedy was given the clearance to go back to school on Friday, which meant she only missed one day.

Lucky 13 indeed, finally the break that Kennedy deserved. And although we weren't quite ready to celebrate, we did relax a little. For a whole four days...

(NEXT BLOG: A Ten Day Ride on the Roller Coaster of Hell)

Take Two!

Preface: I'm not sure where this blog will go, I start writing and I write from my heart wherever that may take me. This was a very long, painful, raw ordeal and it might end up spanning several posts.

You'll remember where we left off: an infection ate all the implanted rib cartilage, ate a hole through her ear. I literally hit rock bottom sitting in the doctor's office. Kennedy had an emotional time with it all. Take two of ear reconstruction meant surgery #12 for my baby girl. Nine years old with twelve surgeries. That is hard to even fathom. And unfair beyond belief.

But when at first you don't succeed, try try again. After several months to think things through, to recover from the first horror that was ear reconstruction, we scheduled surgery to try again. Kennedy's doctor was worried about her missing so much school again, so we scheduled for August 5th. This would allow her to enjoy her summer (and enjoy she did...a week at Nana and Pappy's in WV, a weekend at Biltmore, a week at Victory Junction Gang Camp, a week at the beach, a week with her cousin visiting, another week at the beach, topped off with a trip to Niagara Falls with Gram and Papa, not to mention a new in-ground pool in her back yard...what a boring life this child leads!) and still have several weeks to recover before going back to school.

I don't really know how I felt going into this one. Better than I felt about the last attempt. I still can't say that I felt 100% sure in the decision. But then how can you when you are deciding what your child's face should look like. Above all else, I have faith in Kennedy's doctors. I have to...this is as clear to me as it is clear to the person on my right to have faith in God and to the person on my left to have faith that the sun will come out tomorrow. Too many times I have been been required to put my daughter's life in the hands of a person who holds a medical degree. I couldn't do that if I didn't have complete and utter faith in them. And if he was willing to try again, then so were we. Our end goal has always been an ear and he was willing to do what he could to get us there.

And so we met again on the morning of August 5th. Kennedy was quiet and reserved, as usual on surgery day. Dr. Marcus was ready to roll. I walked Kennedy back and watched her be put to sleep and kissed the tear that leaked out of her eye at the last minute. And then I joined Ryan, Katie, my parents, Ryan's mom, and Pam in the waiting room. All wearing our Team Kennedy shirts. All ready to sit through the agonizing 6+ hours of surgery. Again.

If you've never had to wait while you're child is in surgery, I hope you never do. But if you have, then you know the torture that this process is. From the time you leave them until the time they call you to let you know that surgery has started, is a nightmare for me. This is the time they are prepping your child and placing them on a ventilator. Intubating my child is not an easy task and runs numerous risks. So until I have word that she has been intubated, I can't even breathe. The longer the clock ticks on without word, the more I start to worry that something went wrong. Then comes waiting hour by hour, perking up to listen each time the phone rings to see if it is your hourly update. Then taking a sigh of relief as you hear "still in surgery, all is okay." And this goes on and on and on, until finally you're called to a consult room to speak with the doctor after surgery.

Waiting in this consult room is a nerve-wracking experience. At this point, you don't yet know whether surgery went well or not, and you're child is not yet off the ventilator (and again, my child isn't an easy one to pull off either). And you're sitting there waiting, and waiting, and waiting. And after waiting for what seemed like an eternity, Dr. Marcus finally appeared. And although he was very positive, he was also more guarded than usual. Surgery went well and that was the bottom line. I walked out of the consult room not with a sense of doom, but also not with a sense of peace. I walked out only hoping that this would go better than the first take. I mean, how could it be any worse?

It can often take a long time between the end of surgery and being called into the recovery room. With Kennedy, we are usually called faster than most parents so that we can restore her gift of hearing. They can't figure out what the problem is if she can't hear them. The downside of this is that they usually don't have the pain controlled yet, and the wake-out-of-anesthesia effects are still very visible. I've told you before, I hate the recovery room process. And this time, it was worse. She was in SO much pain. And she was filled with so much "gunk." Gunk, you say? Let me explain. For years, Kennedy has dealt with thick throat secretions (think post-nasal drip x 100 x every single minute of her life). Her allergist, another of our angels, has this under control for the most part these days. But when she's intubated, very thick secretions are pulled from every nook and cranny and it is an awful side effect to surgery. Crying only increases the gunk factor. In the ideal world, she would cough all of this gunk out. But after having her chest cut open and rib cartilage removed, coughing is way too painful. The scary part is we know what this gunk can do. If not taken care of, it will end with a collapsed lung. Eventually after many pain drugs, suction wands, and Benadryl, Kennedy is cleared to head up to her room.

Thankfully, Dr. Marcus sent us to a regular room instead of the ICU. It took awhile for Kennedy to settle down this time, and that was a little unsettling to me. Whereas recovery is an awful process, she is usually calm by the time we leave. But it took her some time this time around, and a lot of pain meds. And let me just say that this is an issue where Kennedy and I butt heads these days. I know what it is like for her to get behind on pain meds. It is not pretty. So I push pain meds for the first 48 hours, till she can better judge her pain and make her own decision about meds. She knows the side effects of these pain meds (which are also not pretty) and tries to limit what she has to take. The more we go through this journey, the more this becomes a fight between us. I think I'm losing...

Our hospital stay was somewhat uneventful, I think. With all that happened after that first surgery, I don't remember all the details of the earlier days. Once again Kennedy had the huge q-tip bandage on her head. She quickly weaned herself from the pain meds. We were home by Monday, all hoping that this was Kennedy's lucky break. Life was returning to as normal as possible.

An appointment was scheduled for that Friday, August 12th, to remove the large bandage, this time in the OR with Kennedy asleep. That way, Dr. Marcus could really examine and really clean up her ear. So needless to say, the waiting game was on...again.

(NEXT BLOG: Lucky 13)

A Support System Like No Other

As I start this post, my heart is filled with so much gratitude and love that I know it will be an emotional one to write. My family, friends, and even strangers...I owe them so much. 


"Other things may change us, but we start and end with family." 
Most of us have made comments such as "I don't know what I would do without Person X in my life."  And in my case, this couldn't be any truer. Because I can say with 100% clarity that I don't know what I would do in this journey without my mom and dad. After Kennedy's first surgery at age 2, when we learned that her life was on the fragile side, my parents have never missed another surgery (okay, my dad did miss a recent one but my mom never has). They have cancelled a trip to Peru for fear that a surgery would be scheduled during that time. My mom has spent her birthday sitting in a hospital waiting room. My dad has driven seven hours home to get there and learn that Kennedy was having unexpected surgery the next morning and turned around and drove seven hours back that night. My mom has spent weeks at a time with us, helping to take care of Kennedy. She has slept in hospital chairs more nights than anyone ever should. My dad has made numerous trips to bring my mom down and pick her back up. They plan their retirement travels around the possibility of surgeries. My mom keeps my laundry going, my house picked up, and Katie fed while I'm unable.  The hours they have spent in hospital rooms entertaining Kennedy, the hours they have spent driving me back and forth to hospitals because I'm too tired, the hours they have spent being there for Katie when I couldn't be, the amount of miles they've put on their van to be here...it is simply amazing. And  I can see how much it all wears on them (it is their grandchild, afterall), but they just keep on going like the rest of us. In no way will I ever be able to express my gratitude to them in this lifetime. It just isn't possible. 


I can repeat here that I will never be able to express all of my gratitude in this lifetime to Ryan's parents. They haven't always been able to be here physically for every surgery, but I know those instances are even harder for them as they wait by the phone. Connie has spent many, many hours sitting in a hospital room, numerous nights "sleeping" in a hospital room chair, and they both have spent many hours praying -- all for Kennedy. And when Connie's here, she will do anything we need whether it be laundry, errands ran, or taking Chelsea to the vet (something I won't even do!). She has made many lonely trips to NC and she'll never know how much it means to us. And my in-laws are so deep in their faith that I know Kennedy is being prayed for in just the right way, at just the right time. 


Brothers, sisters, cousins, aunts, uncles, grandparents. You name it, and they are there for us. Whether it be calling and texting us to check on Kennedy, sending her gifts, making a trip down to visit her, or just thinking/praying for her...we couldn't love and appreciate them more. My brother often keeps me going with his texts, even though he probably doesn't realize it. I can honestly say that both Ryan and I have awesome families and I don't know what I would do without them. 


"A friend is someone who walks in when the rest of the world is walking out."
As true family, our families are going to be there for us no matter what. In our world, we see it as part of our family role. But my friends have chosen to walk by my side and in no way can I express what that means to me. I know that being my friend isn't always easy. But because of Kennedy, I also know who my truest friends are.


Pam, my sister in friendship. I have to think fate put us in the same office when I started working at RTI. No matter what she has going on in her life, she is there for me in a heartbeat. She has spent more hours than I could ever count in a hospital waiting room on my behalf. She has sat beside me during almost every surgery, taken time off of work to be there with me. Sometimes we hardly talk, other times we don't stop. She knows exactly what I need, when I need it. During surgery, my parents and Ryan's parents are there but dealing with their own worry for Kennedy. Ryan is there with his own worry. Pam is there truly just for me on surgery days. And in the aftermath, she comes to visit Kennedy in the hospital, she brings Lea to help brighten Kennedy's day, and she makes me escape the hospital when I clearly need a break. She dons her Team Kennedy shirt with pride and she is truly one of Kennedy's biggest supporters. To say that I owe her is an understatement. But the thing with Pam, no matter if I remember in my haze to thank her or not she knows that I truly appreciate all she does for me. And she knows that I would do the same for her in an instant.  


Some friendships can stand the test of time and distance and I'm lucky to have several of these. Julie always calls me to make sure that I'm okay. I can remember sitting in the PICU waiting room at WakeMed back in 2007 and my phone rang. It was a bad time, bad news just delivered...and she called at just the right time to tell me she loved me. That was all. And that was all I needed. After the most recent hospital visit, I received a card in the mail from Jamie. I was having a crappy day, trying to deal with my guilt over all the recent drama. Her card was a virtual hug and that's exactly what I needed. And Kendra. She's sure to keep me laughing. She is good at keeping me distracted. But she's also one of my best cheerleaders. I think it would take several hands to count the number of texts she sent me in September, reminding me that I could and would get through it. I love them all dearly and will cherish these friendships till my last breath.


And of no less significance are my other friends from along the way, all of whom have been a huge support in this journey. Leslie, Angie, Allison, Terri, Beth, Sarah, Jennifer, Carrie, Janice, Sarah, Jeanna, plus many, many others (and as others come to mind I'll be apologizing to them for not listing them personally). They have mowed our grass, they have walked our dog, they have emailed a hug, they have taken care of my other child, they have sent gifts, they have prayed for us...they have just been there for us. Just knowing that so many people care about us warms my heart and makes life just a little easier. 


As much as I appreciate all of MY friends, what I feel most truly blessed about are Kennedy's friends. Andrea, Carson, Sydney, Megan, Brad...they are all awesome kids. And their moms are absolutely amazing. Andrea first visited Kennedy when she lived in the hospital for a month at age 5. I still remember her sitting in the bed with Kennedy as the nurse wheeled them down the hallway, to a new room. They were giggling the whole way. She visits multiple times each time Kennedy is in the hospital, often staying for hours. During the recent hospital stay and after learning Kennedy had to have another surgery, her mom worked it out so Andrea could call Kennedy every evening while on a school field trip, a trip where they weren't even supposed to have contact with their parents. Andrea has been through it all with Kennedy and I can't even begin to explain what a difference that has made in keeping Kennedy going, keeping her spirits up. Kennedy has been friends with Brad and Megan since they were babies and their support of Kennedy also goes above and beyond. They have awesome parents who I cannot explain how much I appreciate. When it comes to friends, Kennedy won the lottery. And I won the lottery in that her friends have wonderful families who would do anything for Kennedy.  


"Remember there is no such thing as a small act of kindness. Every act creates a ripple with no logical end."
What I have found so humbling in all of this journey is the love and kindness we have received from people who don't know us or people who have never met Kennedy. Today's social networking is an awesome thing, let me tell you. From friends I went to school with years ago to people I will probably never meet to half of the Hurricane Nation, their words of encouragement carry us far. Team Kennedy shines in their support for my baby girl and I can only hope that I can pay their kindness forward in full someday.




My point in writing this blog is simple. Without our amazing support system, this journey wouldn't be possible. Although I sometimes feel alone in this journey, deep down I know that I'm not. Although Kennedy sometimes feels alone in this journey, she knows that she is surrounded with love. And although no one in our support system can fully understand our journey, they don't need to. Because above all else, they know how to be there for us. And they have all helped me learn that it is okay to need help, to ask for help, and to accept their help. No matter what form that help comes in.


So my take-home for all is to build a support system. Make sure you surround yourself with good people, people who are selfless and kind. People who will be there for you when the cards come crashing down. Because you just never know when that might be. 




Thank you doesn't suffice. There are no words in the English vocabulary to express what I feel in my heart for everyone in our support system. We're lucky, I know. I can only hope that each of you reading this have an equally amazing support system. Add me to your list...I owe you all. 


(NEXT BLOG: Ear Reconstruction, Take 2)

To Know Kennedy Like I Know Kennedy

Due to the subject of this blog, my posts are not all happy events. Afterall, I'm hoping I can help others on a similar journey (or anyone who needs an inspiration) and sugarcoating things would not be helpful. And I realize that a lot of people reading my blog have never actually met Kennedy. And even if you have met her, or know her, chances are you don't know the real Kennedy. Bottom line is I don't want anyone inferring from my posts that Kennedy is a sad/unhappy/depressed/pitiful little girl who leads an awful life. So in this post, you're going to learn who Kennedy is. The real Kennedy. My Kennedy.

Our favorite and most used motto is: LIFE SUCKS SOMETIMES. Because frankly, it does. But in between those sucky times, Kennedy is an awesome child who has an awesome life. 

She is funny. She has a sense of humor that rivals her sister's. She is a genius at sarcasm, which can often get her in trouble. There are times when I'm trying to scold or correct her about it and Katie is on the other side of the room laughing hysterically. Let me just say that it is sometimes hard to keep a straight face. And laughter is always the best medicine. 

She is smart. She has always been ahead of her class which makes liking school a challenge. She scored as one of the highest students in the school on her end-of-grade tests last year. You show her or tell her something once and she has it down. She sees a word once and most likely will never spell it wrong again. Academics seem to come naturally to her. She is currently in the AG math program and bummed that she didn't get accepted for AG reading (she scored perfectly on comprehension but due to her facial paralysis and tongue/palate issues, she can not read fast aloud and this hurt her). She isn't one to brag about any of this and that makes me even prouder of her. More than anything, this aspect of Kennedy gives me peace. Because for all else she has against her, being smart can only take her far.

She is loving and caring. She is the first to give a hug or kiss when needed. She still likes to cuddle. She doesn't like when people are sick or hurting. She loves to love on babies...if there is a baby around, that's probably where you'll find her. She'll be a great babysitter in a few years. 

She is shy. If she doesn't know you, good luck getting more out of her than a word or two in response to your words. She has a hard time making eye contact with adults and others who she doesn't know. New situations make her nervous, although she claims they don't. If you knew her as a baby, then you know that she has come a looooooong way compared to how shy she was in her younger days. Although we continue to work on being shy versus being rude. Both her mom and sister are somewhat shy as well, so I don't have a lot of hope that she'll someday completely grow out of this :). 

She has an attitude. I think part of it comes with the age, but part of it comes from her life experiences. Because an attitude can help her get through some tough times, it is a fine balance of allowing her to express herself but not going too far. And as much as her attitude can drive me crazy, it is nowhere near the depth of her sister's attitude at that age. :)

She is modest and unassuming. When someone says that she is their hero, she doesn't get it. She doesn't see why people think she is an inspiration. She feels that she has no choice, she gets through the sucky parts in life, and then it is behind her. What's the big deal?

She is strong. And her strength covers all aspects: physical, mental, emotional. That isn't to say that she doesn't have cracks in her armor. But let me tell you, she wears some pretty hefty armor. She's been through more in her nine years that most of us ever will: 14 surgeries to date, multiple hospital stays, numerous life-threatening infections, several chronic illnesses, hearing loss, speech impediment, and the list goes on. And somehow, she just keeps truckin'.

She is brave. The challenges she faces are never easy. And although she may first meet them with tears, she meets them head-on. Awhile back I posted a picture of Kennedy wearing a shirt that said "No excuses. Just do it." This is truly the epitome of who she is.

She never complains. I know this is hard for some people to believe but it couldn't be more true. And I've learned through her how to be less of a complainer. Although, it can also be frustrating as her mom. The only way that I know she has one of her migraines is that she gets quiet and her cheeks turn bright red. I only know her back is hurting (scoliosis/kyphosis) is if she starts stretching with a pained look on her face. When in the hospital, it is a game of 20 questions to try and get her to say what is wrong. Only once in her nine years has she asked the "why me?" question. Her MO is to suck it up, get through it, and get it behind her. It is just who she is. I really wish I could be more like her in this regard.

She loves to travel. Like her older sister, she has been bitten by the travel bug. And Ryan and I are always up for a trip. I have to say that watching a child die (and again, luckily brought back to life) makes one realize to seize the moment and we do that a lot with family trips. Kennedy has had a crappy 2011 medical-wise, but she's also cruised the Caribbean, visited NASA, spent two and half weeks at different beaches, and seen Niagara Falls. She's now pushing a Disney World trip...always ready to escape reality!

She loves to be a kid. American Girl dolls, swimming, basketball, Wii games, card games, board games, DS games, arts and crafts, riding her bike, playing on a beach, reading, being with friends, Hurricanes hockey. These are the things that fill her time. 

She can be bitter. Like I said earlier, I won't sugarcoat. She may never complain, but she does harbor some bitterness. This usually shines through after a major medical event, but there are other times when it comes through loud and clear. Luckily, I've learned how to read her and can usually get her to open up to me and talk through her issues. Sometimes this is harder than pulling teeth, but I can be persistent. And honestly, aren't we all allowed bad days/bad moods/bitterness sometimes? I think if I walked in her shoes, I'd be bitter more often.

But most of all, she's just a happy child. I don't worry about her well-being or her reactions to difficult situations. Because underneath of all is a happy child and once the current hell is over, that's the Kennedy who will win.

She is who she is, who she wants to be. She's my gym shorts, t-shirt, and ponytail child. You'll never catch her in a dress (unless she's been forced totally against her will). No one will ever accuse her of being a girly-girl and she doesn't apologize for that. Her room isn't painted pink but rather covered with hockey and space posters. She wants to be an astronaut when she grows up and is sure that she doesn't want to do anything that would put her working in a hospital. 

She may not sound like other kids when she talks, she may only be able to hear you from a box on the side of her head, her life may be different than yours. Yes, her medical life has helped shape who she is. But it doesn't define who she is. In fact, Kennedy is pretty adamant that she is not defined by anything. She is just Kennedy, girl extraordinaire. 

ps - This post still doesn't do justice in telling you who she is. She is so much more than these words. If you want to add more about who she is to you, add a comment!

(NEXT BLOG: A Support System Like No Other)

The Reveal

I can honestly say that I don't know anyone close to me that has had plastic surgery (at least who has admitted it :). And therefore, I really have no idea how it all works. And I'm not sure what I was expecting other than the first stages of an ear. I now think it is safe to say that plastic surgery does not give instant gratification.


So surgery was on Friday, we were home on Monday, off pain meds by choice by Wednesday (and let me tell you that if I just had my chest opened up and a rib cut out, I don't think I could have managed this), and back to the clinic on Thursday for the bandage removal. 


Piece by piece the bandage is slowly removed. And I give Kennedy props for being able to sit through this...you could tell it was somewhat painful, hard to sit so still, and she was nervous as all-get-out. But she did it without a complaint, as usual. And at last, we saw her ear.


Now don't get me wrong. I didn't expect it to look perfect and beautiful and instantly resolve all of my feelings of unease. But on the other hand, I don't think I was expecting what I saw: swollen, bloody, red/pink/black/blue, not quite sure of shape...blob on the side of her head. And the doctor must have seen something flash across my face as he immediately began assuring me that the swelling would go down and the color would return to normal and it would look much more like an ear over the next few weeks. And he was right. Day by day, bandage change by bandage change, it started to look like an ear. But celebrating would wait. We still had a long way to go.


The next week I can positively say was one of the worst weeks of my life and I think Kennedy would agree. She was dealing with stomach issues from the pain meds and antibiotics. She was fighting allergic reactions to bandage materials. She just didn't feel good. And it was time to go back to school. This was the part I wasn't ready for, wasn't expecting to be so bad. Her class had been told about her surgery and what to expect when she came back, and they were instructed not to make Kennedy talk about it. But apparently when you've never had an ear, and all of the sudden you are going back to school with not only a new ear but also a bandage on your head it is a MAJOR deal. In all of her 8.5 years, I had never seen Kennedy like she was that week. She was an emotional, nervous, on the edge of a breakdown mess. And I honestly wasn't prepared on how to handle it. We had talked about what plastic surgery meant. We had talked about what her ear would look like. We had talked about having to wear a bandage to school. We had talked about it all. And she had okay'd the surgery. But none of that mattered or registered after the surgery. She was constantly crying, or acting out (for the first time in her life), or just withdrawn. And to make matters worse for me, Ryan had made the decision to go on an out-of-state golf trip that week so I was flying solo with all of this (suffice it to say, a decision that he will never be 100% forgiven for in this lifetime, as he well knows). It was a long, difficult, emotional week that I wouldn't have wished on my worst enemy.


Luckily for us, a road trip to Gatlinburg was on the calendar and was just what we needed to get off the emotional roller-coaster. Kennedy spent some much needed time with her cousin, we watched her uncle get married, and we stayed busy with all the tourist attractions. It was exactly what she needed and things started to go uphill from there.


By this point, two weeks past her surgery, her ear really started to look like an ear. There was clearly an earlobe and bottom part of the ear. And you could really see the contours of the whole ear, albeit it was under her skin and not projected yet like an ear should be (that would be stage 2 surgery). We were all feeling really good about it and she had actually asked to see it. And didn't freak out :). Kennedy finally had an ear!!!!!!!


I think I mentioned that we live a life always waiting for the other shoe to drop. And drop it did. A few days into the next week, the small black spot that the doctor had been watching looked bigger to me. And the framework looked smaller. But I chalked it up to more loss of swelling. Big mistake on my part. By the bandage change that evening, it was clear that something was wrong. And by the time that I got Kennedy to the doctor the next day, the entire ear was gone and there was now a hole where the black spot was. A very rapid infection had set in and eaten all of the rib cartilage used for the ear framework. We would be told that the hole probably saved her life...if it had eaten a hole the other way, the infection would have leaked into her blood or brain cavity and neither would have had a positive outcome. Eating the hole out meant that the infection had a place to drain away from the rest of her body. Our silver lining indeed.


I can't even begin to tell you what I felt. There are simply no words. Sitting in that exam room, I literally hit rock bottom. All of the unease, the guilt, the second-guessing...slapped me in the face. I, and I alone, put this child through all of this, now for nothing. I, a firm believer that a mother should never have to decide what her child's face should look like, made this excruciating decision and obviously it was one of the worst ones I had ever made. By this time, Kennedy and I are both sobbing. The nurse had tears in her eyes. The doctor excused himself from the room and I learned later it was because he didn't want Kennedy to see him cry. Rock bottom is not a fun place to be.


I pulled myself together enough so that they would let me leave the office. We then cried all the way to the car. Then in the car for awhile until I could see to drive. The parking attendant asked if I needed any help and let me go without paying. And I cried all the way home. And this little voice from the backseat said between tears: “Mommy, remember what Dr. Marcus said. We can fix this. It isn’t the end. I can do this again. It wasn’t that bad of a surgery.” And I cried more. And I'm honestly not sure when I stopped crying. 


That was a Thursday and on Sunday afternoon, Kennedy's plastic surgeon called us to make sure we were okay, to make sure we were picking up the pieces, and to assure us that this wasn't the end and that he was with us all the way. He'll never know how much that phone call meant to me. I'm pretty sure that if we had stayed with UNC, we would have been sent on our merry way by now. 


We have no idea what the infection was (there was nothing left to culture by the doctor visit 24 hours later). Her doctor had never seen anything like this, in all of his experience. We could blame it on germs at school, sleeping in a Gatlinburg hotel room, an allergic reaction from one of the ear bandages. At this point the nerves had started to grow back and Kennedy was tempted to itch her ear constantly...maybe she had something on her hands. But we really have no idea. In a way, that was a good thing. I was already blaming myself and if it wasn't something that could have been prevented, I think the blame would have only been worse. 


The only way to go at that point was up. So we started climbing up that ladder. Because in the end, we would end up on top again. No matter what it took. 


(NEXT BLOG: To Know Kennedy Like I Know Kennedy. ps...I'm not quite ready to continue ahead yet, it is still too raw. So enjoy some in-between blogs.) 

A Mother's Instinct is Seldom Wrong

When I first learned that I was pregnant, I knew something wasn't right. And when test after test came back with funky results and I had to have more testing, I knew that test wasn't the answer. And when all tests eventually came back as okay, I still knew that they were all wrong. It was a long nine months. And although her diagnosis at birth was a shock to us all, maybe it shouldn't have been. Because my mother's instinct had tried to tell me from day one.

Over the years I have learned to trust it, not to chalk it up to overreacting. After dental surgery, it was mother's instinct that landed us back in the ER where Kennedy was admitted for a collapsed lung. During her long hospital stay at age 5, it was my mother's instinct that made the doctors pull the second VEPTR out of her back...we were home and on a better road to recovery within two days. During her T&A, it was mother's instinct that made me question everything that the doctors and nurses did (and rightfully so or I'm pretty sure she would have been taken to the morgue). It was mother's instinct that recently led us to an emergency doctor's appointment where she was admitted with MRSA (a future story). It was mother's instinct that led me to get rid of doctors and hospitals along the way, to change paths on our journey when needed, and to make the choices I have made.

And my mother's instinct was certain that I had made the right decision in jumping ship to Duke for ear reconstruction surgery. So why then was I not at peace with the upcoming surgery? My best friends can attest...I was a complete and utter mess in the weeks leading up to her October ear reconstruction surgery. I constantly second-guessed myself, I didn't sleep, I was in full stress-out mode.

So it is surgery day. We are up and out of the house by 5:30am. I haven't been to sleep yet (and will pull a 64 hour mommy shift before I can sleep again) and Kennedy is barely awake. By the time Dr. Marcus is done with his first patient and takes Kennedy back to surgery, it is several hours past her original surgery time. It then it takes over an hour to get her intubated and prepped. We later learned that they had a really, really hard time getting her on the ventilator.

What didn't help with matters was that it was a day where I needed to be in two places at once. While one child had to have a major, 6+ hour surgery that would forver change the way she looks, the other was serving on the Homecoming court that evening at the football game (a big deal when you're in a high school of 2500 kids, a big deal when you're a teenager). My sweet, sweet Katie will never know how hard that day was for me, not to be there for her. Because through all of this, my goal has always been never to short Katie for Kennedy's medical journey. And here I was, doing just that. My dad, her Papa, was filling in for Ryan as Katie's escort. My mom agonized over what to do and left the hospital with Kennedy still in surgery to be there for Katie. Ryan's dad left the hospital at the last minute and rushed to be at the football field to watch Katie cross. And our dear friends Josh and Allison surpirsed Katie by showing up to support her. As I sit here and remember that awful day, the tears are falling. It may seem insignificant to some, but having to pick one child over another is a heartbreaking, excruciating thing to do. I can only hope Katie understood and I am ever thankful for the support system we have (another day, another blog).

Six plus hours of surgery...how was I going to survive that? The max at this point was three and that was hard enough. But to reconstruct Kennedy's ear, there were several major things that had to happen. 1) Kennedy had an "ear bowl", unlike most kids with her syndrome. But it was down further than it should have been, out more towards her cheek, and much bigger than normal. So Dr. Marcus first had to do what he could to move this bowl in a better place and make it look natural. 2) Kennedy had several small pieces of cartilage where her ear started to form and didn't finish. He had to use one part as the earlobe and place the other pieces under her scalp to use in a follow-up surgery. 3) And most importantly, Dr. Marcus had to take rib cartilage from her rib cage to use as the framework for the new ear. He shaped this into an ear and planted it underneath the skin, making the shape of ear but with no projection. The next surgery would project it, using the planted cartilage.

Every hour we are given an update...still in surgery, they are still working. I painfully said goodbye to Katie (who skipped school to be there) as she heads off for her homecoming festivities. And we wait, and we wait. We were the last ones in the waiting room, going on 7pm, by the time Dr. Marcus comes bouncing out to us. And he is thrilled. He is still flying high on adrenaline and feels that he was able to do better than he had ever hoped. And although I flew with him at the point, I still wasn't at peace.

Let me just say that I hate post-op recovery. As much as I hate pre-op and waiting and stressing for surgery to start, and as much as I hate walking my tearful baby back to the OR and watching her be put to sleep, I hate watching my baby wake up in pain more than anything in this world. For those that know Kennedy and have been with her through these journeys, you know that Kennedy NEVER complains. It is often easier to get a bipartisan Congress to agree on something than to figure out if she's hurting or not, if she's needing pain meds. But coming out of anesthesia, it is a different story and all her walls are down. There are tears and sobbing, there is yelling "ow, ow, ow, ow." Then come the allergic reactions so on top of all the pain, there is just plain misery. And the tube has caused extreme throat secretions which she has trouble coughing up due to the pain, but can't breathe well if they aren't coughed up. And she doesn't want to move at all to avoid the pain. And with anesthesia still on board, there is no rationalizing, no convincing her that something may help. Recovery just plain sucks. And to top this one off, her head is engulfed in this huge, q-tip-like bandage which she DID NOT LIKE.

That night was spent in ICU. And for all Duke Children's has going for it, their ICU blows. Not the care, just the set-up. They are double rooms and we were first put into a room where a teen boy was dying of a brain tumor. They had called in the entire family just that afternoon. We were moved later that night, learning later that the boy's family saw Kennedy's entire head in bandage and thought she was another brain tuomor patient. They said it was too hard for them to see a child that small going through the same thing their son had been going through. Although Kennedy's issue was much simpler than they thought, I was happy to be moved as I wouldn't want to intrude on someone else's death. With all the children who take their last breath at Duke, my hope is that they someday soon have individual ICUs. And ICU policy does not allow parents to sleep in the room (I can't even begin to explain this one) so night two of no sleep for me.

We were moved to a room the next day and the rest of the hospital visit was uneventful. The nurses were great, the hospital was great. Being on the cancer floor (where we were told that Dr. Marcus likes his patients) was humbling in so many ways. Surgery was on Friday and we were heading home, albeit still in the q-tip bandage, on Monday. And although Kennedy was doing well post-op, I still wasn't at peace.  

I keep coming back to the point that I still wasn't at peace with everything. At the time, I was chalking it up to the fact that I was mad that as a mother, I shouldn't have to decide what my child's face is going to look like. Looking back, I think my mother's instinct was trying to tell me that even though switching to Duke was the right choice, ear reconstruction may not have been (and it will take a few more blogs to determine the truth or not of this statement). But as Dr. Marcus reminded us, hindsight is 20/20. But a mother's instinct is seldom wrong.

(NEXT BLOG: The Reveal. And please know that whether you know us or not, it is okay to share this blog, okay to comment on this blog, and okay to choose to be a follower of this blog. It is also okay to stop following at anytime :).

Jumping Ship

"Sometimes, it's the smallest decisions that can change your life forever."

On September 3rd, 2009, a few months after Kennedy turned 7 years old, we made the trek to Duke Children's Clinic and met with Dr. Marcus, chief pediatric plastic surgeon. I have to wonder if he regrets the day we ever walked through that door.

Now remember, I had exhausted my research at this point. I was unhappy at UNC. I was overwhelmed with where to turn next. So although I had hope that this might be a good path for us, I wasn't holding my breath. And then something amazing happened. Kennedy spoke to him. And then she actually talked to him.

Let me explain something about Kennedy and her medical journey. I'm assuming you've read the last blog, the Backstory. So you know she's been to hell and back several times in her life by this point. Her coping mechanism is, and has been since she was a baby, to go inside of herself the minute a nurse or doctor enters an exam room. She goes silent, never uttering a single word until we're back safe in the car. Her pediatricians learned to stand outside the door and listen to her conversation with me before coming in, just so they had confirmation that she knew how to talk and to gauge her speech issues. It took Dr. Mankin (her orthopedic surgeon since birth) eight years to even get her to wave hi or bye to him. So when she started muttering words to Dr. Marcus on this very first time of meeting him, it was like witnessing an alien, something so foreign to me that I couldn't even process it at first.

And I think that was my omen. My omen that maybe it was time to take the road less traveled, time to jump ship. But now the hard part...convincing Dr. Marcus that he should take Kennedy on as a patient. Because when you're that important in your field, when you're that good, it is your choice who you operate on. He was honest with us from minute one...Kennedy was a complicated case, unlike most others with this syndrome due to her ear canal and ear bowl; he was a perfectionist and wanted to give only perfection; with her anatomy, he wouldn't be able to give perfection but maybe he could come close.

So he took his pictures, his measurements, his notes. And we left. We left with needing to make the decision of whether to jump ship from UNC to Duke. We left him with needing to make the decision of whether to take Kennedy on as a patient or not. And then we waited. And we thought. And we rationalized. And we slept on it.

And then I probably made one of the best (albeit extremely difficult) decisions in this journey. I decided that we would go back to Dr. Marcus. That we would indeed jump ship. And luckily in the meantime, Dr. Marcus agreed to take Kennedy as a patient. Sometimes though I wonder if I was secretly hoping he wouldn't agree. Jumping ship didn't just mean a new doctor. It meant a new hospital where we had never been. A new anesthesia and ICU team who didn't know Kennedy. A new Child Life Specialist who wasn't aware of how Kennedy handles her medical life. A new face for my baby girl. It was a completely new journey for us, a journey not taken lightly. I will admit that jumping ship and moving forward with ear reconstruction was one of the most difficult, stressful decisions that I've made thus far on this journey with Kennedy. But usually in the end, those decisions are the best.

And so we prepared. We met with the anesthesia team, armed with all of her records from past surgeries. We met with the Child Life Specialist to learn the ins and outs of Duke Children's Hospital. We met with Dr. Marcus to make final plans. And we scheduled Kennedy's first ear reconstruction surgery for October 8, 2010. After 8.5 years of thinking about it, stressing over it, dreaming of it, anticipating it...we were actually taking the step.

(NEXT BLOG: A Mother's Instinct is Seldom Wrong)

The Backstory

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”  (Khalil Gibran)

I first heard this quote on the tv show, Criminal Minds, several years ago and it has stuck with me ever since. I'm not sure I could come up with a better quote to describe the life Kennedy has led thus far: With all of her suffering, she is truly the strongest soul that I know; And her character, which many perceive as massive, is seared with physical, emotional, and mental scars. 

It wouldn't be fair to share our journey for an ear, if we didn't include all the road bumps we endured to get there (and I will apologize now as this might be a long blog post). See, having a craniofacial syndrome is similar to always waiting for the other shoe to drop. There are, of course, the obvious physical differences that one can see from the beginning. Then there are the things that are found through the numerous tests that are required. But even then, you don't know what you're dealing with. Because at anytime, you can get a piece of news that will floor you. Just when you thought you knew the battle you were fighting, the battle changes.

Within an hour of birth, we had a diagnosis. And we were given a flash training on what the diagnosis definitely meant for Kennedy and what it might mean in the near or distant future. But nothing can prepare you for all that you will go through.

Before leaving the hospital, we learned that she was deaf in the affected ear, that she only had one kidney, that she had trouble swallowing due to facial paralysis, that torticollis affected her neck muscles, and that her sinuses were extremely small for a full-term baby. At six weeks old, we were in the cardiologist's office having a full heart check-up. With hemifacial microsomia, heart problems are not rare. Luckily, for us, we received the good news that her heart seemed to escape the syndrome. At six months old, we had a physical therapist coming over to perform neck exercises twice a week. With a screaming baby. Yeah, that lasted long. For the first two years, we made bi-monthly trips to the development center to assess whether she was developing on track. For all the stress that caused, they should see her now!

At age 2.5, Kennedy underwent her first surgery at UNC. She was born with no enamel on her baby teeth and she had a host of dental problems. The dentist decided to do everything in one surgery and I was too new to all of this to disagree. She had numerous crowns placed, teeth pulled, root canals. I did put my foot down in the middle of surgery when the dentist wanted to pull all of her front teeth out as a precaution. Being her first surgery, we had no idea that it would turn into such an ordeal. After surgery, she was having trouble breathing. Only one of us was allowed with her in recovery and I took a break to call grandparents. I just remember breaking down in the hallway, the first time I realized how fragile her life could be. We eventually went home that night only to rush back to the ER the next afternoon with a partially collapsed lung and doctors who were in disbelief that 1) someone did that much dental work on a 2 year old in one surgery and 2) that UNC let her go home the night before. Had I been wise enough then, that would have been the last surgery at UNC. I will say that in order not to make a scene, I've never taken Kennedy to another dental appointment. That dentist, although she doesn't realize it, is lucky that Ryan is so laid-back.

Soon after came the three year old appointment which found a major vision deficit in her right eye and scoliosis/kyphosis in her back. Two major blows in one visit. Around this same time, we knew for sure that she wasn't hearing us well, so at age 3 Kennedy received her first hearing aid in her "good" ear. Make that three major blows. That was a huge adjustment for her, but also a huge help. At the eye doctor, we learned that the eye on her syndrome side has never learned to focus. Her other eye was overcompensating though so we never had a clue. We tried patching and a contact and to this day, it still isn't much better. Hopefully there is a fix for this one day in the future of medicine. In the meantime, we pray that nothing happens to her "good" eye. So I am the parent always yelling about things where a child could get their eye poked. Because if it is my child, then she has to lead a blind life and I cannot imagine that path.

We then visited with the orthopedic surgeon from her torticollis days and the bad news just kept coming. Not only did she have progressed scoliosis and kyphosis, but one side of her chest wall was not growing properly. And as we debated and discussed our options, her heart and lung were being squeezed. She fought pneumonia after pneumonia battle. She had no energy and was losing her spirit. We finally decided that she would be the first person in the state to receive the fairly new VEPTR, a titanium rib, to help with both the scoliosis and the rib cage. One would run the length of her spine, the other attach from top to bottom ribs and be expanded on a regular basis to stretch her rib cage. I won't go into all the details but the highlights were: major surgery to put the equipment in, 3 days on life support for pain relief, taking the ventilator out only for her to crash, watching her die (see my note on my page or Team Kennedy page for more on this), watching her be brought back to life, on life support for another 6 days while we wait to see if there was any brain damage, finally waking up only to learn to walk, talk, and eat again, a second surgery to fix one of the bars after it broke part of her spine off, constant infections, a third surgery to take the second bar out, PT, OT, 23 days in the hospital, and it goes on and on.

The VEPTR saved her life, has allowed her heart and lung to recover and grow normally, and she has never had pneumonia again. But we've faced many other battles since then. Eight months after the VEPTR month from hell, we were once again making the decision to have surgery to save her life. At this point, her sleep apnea was so bad that she was stopping breathing multiple times a night. What was supposed to be a simple T&A turned into: trouble controlling pain (ie, them not listening to us that she has high pain med tolerance due to life support the previous summer), a lung collapse, life support for 5 days, horrendous nursing care, a strep-pneumonia infection in her lungs from the life support equipment, a crash of her antibodies to fight off infections and 2 years of constant sinus infections following this. And a promise from me that my child will never undergo surgery at UNC hospitals again. Which in turn, led to me turning elsewhere for ear reconstruction options.

The years following brought multiple surgeries to lengthen the remaining VEPTR and two surgeries to give her a bone-anchored hearing aid (her lifeline and by far, the best decision we've ever made). But the doctors and hospitals really knew her by this time. These other surgeries were very uneventful and after a quick fix with a shot, she was finally healthy again. And thinking that things were finally going our way for once, we started thinking it might be time to begin the ear reconstruction process.

Kennedy's backstory plays a lot into our decisions on our journey for an ear. Kennedy's backstory have created many scars. We've been on this journey for an ear since the moment she was born but who knew all this journey would entail. And as we constantly wait for the other shoe to drop, we make the decision to jump ship...

(NEXT BLOG: Jumping Ship)

A Fork in the Ear Journey Road

"Two roads diverged in a wood, and I-
I took the one less traveled by,
And that has made all the difference." (RF)
This line from Robert Frost is one that sums up how I feel about the road that we ended up taking in our journey for an ear. Many people would stick with comfort, what they have known for years and years. Our safe road, the road traveled most often, was to stick with our plastic surgeon at UNC. Even though I knew he wasn't a good fit for us, he was still a qualified doctor, a doctor who has followed Kennedy for seven entire years at that point. Her entire life.

But I listened to my instincts. And now I know why. Because it has made all the difference. By this time, the social worker on our craniofacial team had become my sounding board, my friend. She knew I wasn't happy with the UNC plastic surgeon. She knew I refused to allow Kennedy to have surgery at UNC and that I was wary of the process of a UNC doctor operating at another local hospital. She knew I needed to continue on with our journey outside of the UNC Craniofacial Center.

So she put us in touch with UNC's medical artist, a person who specializes in making prosthetic appendages. He was a renowned medical artist, even well-known for making prosthetics for Hollywood. So we met with him with renewed hope. And the first thing he says to us is that he doesn't know why we are there, he wouldn't even think of touching Kennedy till she was at least 13. And because our chart says no surgeries at UNC, he just couldn't help us. I could say that I left that appointment insulted, but frankly I just left pissed off.

A prosthetic was already near the bottom of my list of options. We were really hoping for something that was part of her, something that couldn't be taken off or fall off. And this guy surely turned me against the prosthetic world totally. I realize now that my emotions of this one visit probably clouded this option for us but hindsight is 20/20 (trust me, I know by way too many experiences).

And so my frantic search began. I emailed plastic surgeons from various top hospitals. I looked at picture after picture of their before/after work. I researched using rib grafts vs. using a synthetic frame. I researched every option until I was just exhausted.

I think this is when my mental exhaustion finally kicked in. Have you ever done so much research on something, and found so many options, that you were just overwhelmed and more confused than when you started? This is also when everything became so real and the only thing that my mind kept coming back to was the motto I will repeat every day of my life until I die: NO MOTHER SHOULD HAVE TO DECIDE WHAT HER CHILD'S FACE IS GOING TO LOOK LIKE.

And then it slapped me in the face...we have one of the best hospitals in the world in our backyard. And their plastic surgeon is considered one of the best from all that I've read. Why not take the road less traveled by and try someone else local, someone brand new? And so on September 3rd, 2009, a few months after Kennedy turned 7 years old, we made the trek to Duke Children's Clinic and met with Dr. Jeffrey Marcus, chief pediatric plastic surgeon. And that has made all the difference.

(NEXT BLOG: The Backstory. You'll notice that this blog goes back and forth and forgive me for the volleying. But I tell it in the way it makes sense to me. :)

The Start of the Journey

Technically, the journey for an ear started on May 8th, 2002. Miss Kennedy Grace Goodwin entered this world and stole our hearts. Within hours of birth, she was diagnosed with Hemifacial Microsomia/Goldenhar Syndrome: no right ear, only pieces of cartilage; small right jaw; right-side facial paralysis; mishapened head; deaf in right ear; possible vision issues in right eye; large pockets of fluid in her brain; spinal/neck issues; single kidney...just to name the main issues. The birth of our sweet baby girl began the journey for an ear (among other things!). Immediate with the diagnosis was the promise that a doctor could someday fix it, that there are all kinds of options in this day and age. And so our journey began.

At six months old, we made our first trip to the UNC Craniofacial Center. Talk about a nerve-wracking visit...a 6 hour day scheduled to include about 10 different specialists. We met with dentists, orthodontists, speech therapists, a social worker, a psychologist, plastic surgeons, maxofacial doctors, ENTs, audiologists and I'm sure there were more. Each one had their own concern about Kennedy, each one had their own opinion on what her future life would be like. I remember going home and crying that day. I had never felt more alone in my life.

See, that's the thing about having a child with some special need...no one ever really knows what life is like for you unless they walk a very similar path. We all have our own paths that we can say that about (and in no way is this path any more important than your path), but when you're feeling totally helpless where your child is concerned, it can be a very lonely place. I often think about how different coping would be if these same circumstances were freshly thrown at me today, in the time of a social media blitz. But I digress.

From birth, we've been saying that someday a doctor will give her an ear. We made annual trips to the UNC CFC where the plastic surgeon talked every visit about plans for future ear reconstructions. We always knew that we wouldn't move on it till about age 7, an age where the ear has grown close to its forever size. But when she hit 7 and it was time to really make some major decisions, I just wasn't sold anymore.

At that point in Kennedy's journey, she had already had seven surgeries (all life-saving and absolutely necessary). She had died and been brought back to life, something I hope none of you ever have to watch with your children. She had been on life support following two different surgeries within a year of each other. I had also vowed that in order to keep her alive, she would never undergo surgery again at UNC hospitals. Which puts a halt on things when you're dealing with UNC doctors.

At this same time, I also started to trust my instinct on doctors. As long as we were just talking about it, sure, I could discuss it with anyone. But by that point, I was pretty good at determining which doctors were a good fit for us. And even though the UNC plastic surgeon agreed to operate at a different hospital, I knew in my heart that he wasn't the right person. I knew I couldn't move on withour exploring other options. I knew it was time to continue on with our journey...

(NEXT BLOG: A Fork in the Ear Journey Road)