Decisions

So I was scrolling through the Team Kennedy page, updating some information, when I ran across this "note" that I had posted (before I started writing this blog). It was written August 16, 2011...right after finding out that Kennedy needed a second skin graft after the second try at ear reconstruction. A few days after that second skin graft, a MRSA infection landed her in the hospital for 10 days and only ended because her new ear was removed, taking with it our last hope for reconstruction. 

Decisions. Some are easy, some are just damn difficult. But they must be made. I’ve made my fair share of major, life-altering, difficult decisions in my lifetime. Some have been right, some have been wrong. No matter what, the simple act of making the decision usually brings peace…the decision has been made and so be it. But that isn’t always the case.

In my 35 years, the most difficult decision that I’ve ever had to make is to decide what my child’s face should look like. Why should a mother ever have to decide such a thing? Let me answer that…NO MOTHER SHOULD EVER HAVE TO DECIDE SUCH A THING. For eight years, I agonized over the decision. For eight years I found new doctors to consult, conducted hours of research, explored all of our options. For eight years I weighed the pros and cons of “doing something” vs. “doing nothing.” For eight years, I struggled with the balance of letting my child know she is perfect how she is yet talking about options to make her change what she looks like. Then I made a decision.

I found an awesome doctor (truly awesome…I wonder where we would be in all of this right now without him). I decided that “doing something” before Kennedy enters middle school would be best for her self-esteem. We came up with a plan. Then I fretted. And worried. And dreaded implementing that plan.

Then last October, that decision became reality. After Stage 1 of ear reconstruction, her new ear looked awesome. I finally felt vindicated in the decision that I made. After eight years of thinking through the options, I knew we had done the right thing for Kennedy. I was at peace.

Almost three weeks later, that decision came crashing down in a million pieces. A fast-moving infection swept through and ate all of the grafted rib cartilage and a hole through the ear (which fortunately, ended up saving her life by giving the infection an external drain site). Sitting in that doctor’s office at Duke, one of the world’s leading hospitals, I hit rock bottom. No one will ever understand how I felt that day. The decision that I had made was now just a mistake. Who was I to think that I should be deciding how my child’s face should look?

Then on the way home, I heard these words from the backseat, through sobs, “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.” Who was I to hold the trust of this amazing little girl? Who was I to make this little girl be my comfort? My job was to comfort her, not the other way around.

On a Sunday afternoon, Dr. Marcus called to check on us, to reassure me that it wasn’t the end, to let me know that this affected him too. That one phone call, from a busy plastic surgeon, on a Sunday afternoon, is one that I will always cherish. And because of this amazing child, and because of this awesome doctor, I made the decision again…if at first you don’t succeed, try, try again.

Which brought us back to the operating room a couple of weeks ago. Stage 1 plus Stage 2 ear reconstruction. All precautions taken, all systems go. Her surgeon was positive after the surgery…but a mother’s intuition can go a long way. I had a bad vibe, although kept it to myself in hopes that I was wrong. So when a week later we get the news that part of the skin graft wasn’t taking, I wasn’t surprised. Disappointed, yes. But not surprised. And now, I again question the decision. As we wait. And wait. And hope for a happy ending to this journey. This is our last shot at this type of reconstruction. If not a happy ending, I don’t know where we go from here. I don’t know how I find the strength to make another decision.

Someone recently made a comment to me that if it doesn’t work out, at least it is only cosmetic surgery. And I’m sure there are others that don’t understand what the big deal is. But we’re not talking cosmetic surgery here. We’re talking about confidence, self-esteem, stopping the whispers and stares and laughs and harsh words. We’re talking about quality of life and happiness. We’re talking about a little girl who just wants to look like and be treated the same as other little girls.

Unfortunately, this isn’t the end of the difficult decisions. Up next is her cheek/smile and then her jaw, with a spinal fusion thrown in somewhere too.  In some ways, I look forward to the day when Kennedy can make her own decisions about such things. In other ways, I don't want her to ever have to make such difficult decisions. Someday, I hope she can appreciate the decisions that have been made for her. But no matter how any of this turns out, her sweet little face is a face that I will love and cherish forever.

I don't even remember writing this but looking back, a few things strike me: 

1. I should have trusted my intuition and skipped the whole second reconstruction. Okay, I don't mean that...it should have worked and would have been great. But it makes me realize even more that trusting my instinct is usually a smart move.

2. Just when you think things can't get any worse, they can. 

3. A turning point was reached shortly after this was written. After all that Kennedy went through, I couldn't make any other decisions regarding her ear. Although I think it was the right decision to make, the prosthetic process path that we're currently on was Kennedy's sole decision, her own choice. And forever and always, I support her 100%. 

4. This little girl is more amazing to me everyday in her strength. She is truly my hero.

Sister-ship

I've written about surgeries, appointments, and hitting bottom. I've written about who Kennedy is, how much my support system means to me, and what I'm afraid of the most for Kennedy. Today, I'm writing about big sisters (which may seem odd since I don't have one nor am I one). More importantly, I'm writing about Katie. I've shared bits and pieces about Katie, but I haven't shared who she is on this journey. And frankly, she's a pretty important piece of our puzzle not to share. 

I came home from answering phones for the Duke Children's Radiothon the other day to a text from Katie, telling me she had donated money in honor of Kennedy. Her own money. She donated last year too but that was a little different - Kennedy was trying to raise a certain amount and honestly who weren't we begging from then? This year she is a poor college student, hours from home and the radiothon. I mean, we know that like most college kids she would rather spend her money on tutors and study guides and laundry and Friday night pizzas while she stays in and studies (right? that's what college kids spend their own money on, right?). So that she would make the effort this year to donate, to donate her own money, and do it in honor of her little sister? It made my eyes overflow and my heart swell with pride and love.

But should this surprise me? No, because this is who Katie is. From the time she cried tears of joy upon hearing that she was going to be a big sister, Katie has truly been a part of this journey. And mature beyond her years, she has taught us many a thing throughout this journey. She was the one who taught me through a story she wrote and shared with her second grade class, that her sister was born with an ear "that looks like a flower, and that's okay." She's the one that taught me that it is okay to pick on Kennedy, that she needs it to build her self-confidence and it teaches her how to stick up for herself. She's the one who continues to try to teach me YOLO!, that you only live once (of course now that I think about it, this usually has to do with something that costs ME a lot of money in the end). She's the one who taught me that as the big sister, she is the best one to pull out the smiles and laughter when Kennedy turns inward and tries to shut the world out.  

But being Kennedy's big sister hasn't always been easy. She has been put on the back burner while we deal with medical issues. She has had to enjoy vacation excursions without her mom because I was at the hospital with Kennedy. She went a whole month with seeing me only in a hospital setting, and usually crying. She's had to leave a sick and unstable Kennedy a number of times because she wasn't allowed to stay in the hospital with her, not knowing if she'd see her again. She's had to sit through school knowing Kennedy is in surgery and also knowing that surgery can go bad in a matter of seconds for Kennedy. She has had to face some pretty special moments (like being honored on the homecoming court) without me there to cheer her on because I was in a surgical waiting room. She's had to sit back at times and watch Kennedy get presents and attention and extra love. She's had to endure Kennedy's jealousy of her non-medical filled life which only gets worse the older Kennedy gets. I could go on and on. But do you know how she handles these situations? With grace. Because this is who Katie is.

Although I don't have a sister myself, I know plenty of people who do. Some get along, some are estranged. Some fight constantly, some would give their life for the other. Sister-ship is a complicated thing, for sure. Goodness knows that these two have their own moments. But being a big sister on this journey has helped Katie become a good sister, a good friend, a good person. That's one of the positives of this journey...seeing how it has positively shaped this beautiful young woman. 

With all that we've been through, with all that she has seen and been witness too, Katie has decided to follow the dream of a nursing career. And although she is leaning in a different way, I know in my heart that she will end up on a pediatric floor somewhere. Because if you can make Kennedy laugh on the darkest of a hospital day, then you have a calling. No matter what she chooses, both patients and their families alike will be lucky to have her in their life, even if only for a short time. 

As Katie continues to soar through life, my worries about Kennedy making her way through this journey in the future lessen. Because I know that if ever I can't be the one to stand up for her, or pull her up and keep her going, she has a big sister right behind me waiting to pitch in. Because this is who Katie is. 

And whether Katie believes it or not (age 10 brings out the sisterly attitude full-force), Kennedy loves her big sister more than words can say. As do I. 

The End is in Sight...

I recently ended a Team Kennedy page update with the words "the end is in sight." And ever since, those words have been weighing heavily on my mind. In some ways, I truly believe that. I truly believe that we're coming to the end of a very emotional, devastating at times, exciting path in our journey. In other ways, I know that we have paths still to navigate on this journey, and other paths that we will discover in the future. So is the end really in sight? And what end am I really looking forward to?

When you're handed a baby in L&D recovery, you are overwhelmed with love and pride. When you're handed a baby with a medical diagnosis, you are also overwhelmed with caution, fear, uncertainty, and sadness. But within an hour of that medical diagnosis, I was also promised an ending, one that ended with an ear. A promise that the most visible reminder of this somewhat-complex medical diagnosis could be fixed, could be perfected. And honestly, I've held on to that promise for ten years.

One might wonder what the big deal is about an ear? Why make your kid suffer just for an ear? Are you really that vain? Some people live their whole lives without a body part of some sort. Some people have it a lot worse than your child.

But here's the deal. For ten years, I've had to watch my baby girl endure laughs, stares, whispers, rude comments, people pointing in her face, everyone who goes by giving a second glance, pointed questions, and assumptions that she also has cognitive challenges. Ten years. Think about what that would do to your self-confidence level. Think about what that would do to your soul. And you're an adult. Now think about what that could do to a child. A shy, quiet child. When I talk about an end in sight? This is what I want to end. Because after ten years of watching it, it just gets to be too much.

Don't get me wrong, Kennedy handles all of this and her self-confidence is building every day. But her defense mechanism is to ignore it all. I'm the one reminding children and adults alike that it isn't nice to stare or whisper about people standing next to you. I'm the one worrying in new situations about what's she going to face. I'm the one answering the questions. I'm the one worrying about her because even though she "ignores" it all, I know she realizes it all, sees it all, and internalizes it all. And even though I know that dealing with this on a daily basis has led to how strong of a person she is, she shouldn't have to be that strong, dammit.

So yes, I'm looking forward to this whole process being over. Our first ear reconstruction ended with a severe infection that ate all of the implanted cartilage. I literally hit rock-bottom after that one. Our second attempt at ear reconstruction ended with MRSA and removal of what would have been a very cute ear. Those close to me know how devastating that was to all of us and the guilt that I still carry because of it. And now with our third attempt at an ear, a prosthetic ear, we are well on our way to ending this quest.

And I'm looking forward to reaching the point where she can just be Kennedy, with or without the ear as she chooses. She will have the option and that gives both her and I peace of mind. And I'm looking forward to ending this whole balance game of convincing her that's she is beautiful just as she is and she will be beautiful with an ear too. And I'm looking forward to not having to defend my decision anymore of moving forward with this, causing all of this medical drama in her life.

But what I'm really looking forward to is the end of the stares, the laughs, the whispers, the assumptions. I'm looking forward to not seeing the anxiety or sadness in her eyes as she "ignores" the children and idiots (i.e., adults who do this) around her. I'm looking forward to seeing if she decides life is better with or without an ear. I'm looking forward to watching her have a tool to become more comfortable with herself in social situations. I'm looking forward to the end.

So even though we have many paths yet to go, and some that we probably even haven't discovered yet, the end of THIS path is in sight...

Life's A Dance

On a recent road trip, John Michael Montgomery's Life's A Dance came on. I've heard this song hundreds of times (can't take the country out of the girl), but it wasn't till then that the words slammed into my heart. And really gave me some much-needed clarity about this journey we are on. Because as with any journey, when you're in a holding pattern you start second-guessing. You start worrying. You start wondering if you made the right decision. 

Life's a dance you learn as you go
Sometimes you lead, sometimes you follow

I've always been the leader on this journey. Kennedy is just a child, afterall. And Ryan, well he's Ryan (a great dad, don't get me wrong; but major decisions are not his strong suit). For almost ten years I've only led this journey, second-guessing every step we take. But after last year's disastrous ear reconstruction, I started to take more of a backseat and put more of the decision-making on Kennedy. Moving forward with the prosthetic process was her sole decision. I'm simply a follower at this point. But following doesn't come easy for me...it comes with just as much guilt as leading. Am I right in letting her decide? Am I putting too much on her shoulders? She is still just a child. But, life's a dance you learn as you go...

Don't worry about what you don't know
Life's a dance you learn as you go

Don't worry about what you don't know? Is that even possible? The don't knows scare me the most. Just when I stop forgetting all the don't knows regarding this child, one comes barreling at us full speed ahead. However, we can't control life. We can't predict the future. We don't know what fate has in store for us. So at some point, we all just have to stop worrying about what we don't know and move on with what we do know. If it is meant to be known, then eventually we will know it. And will deal with it then. Because life's a dance you learn as you go...

The longer I live the more I believe
You do have to give if you wanna receive

I'm a firm believer in the adage that you have to give in order to receive. And more than anything on this journey, I give my faith to our angels in white coats (well, okay they usually have scrubs on when I'm giving them most of my faith) in hopes of receiving what I've always promised my baby girl -- a healthy, normal-as-possible life. It isn't always easy giving them my baby girl. It isn't always easy letting them have the reigns. It isn't always easy knowing how to give them my faith. But life's a dance you learn as you go...

There's a time to listen, a time to talk
And you might have to crawl even after you walk

Knowing when to listen and knowing when to talk isn't always easy. Especially when Kennedy keeps things so bottled up inside. But I'm learning. And when I start to question whether she needs a professional to help her through this journey, I remember that I am her best advocate. I know her better than anyone else on earth. And I know that even though she's had to crawl after she walks numerous times, she's still a happy kid. This will come back to bite me in twenty years when she send me her therapy bill. But life's a dance you learn as you go...

Had sure things blow up in my face
Seen the long-shot win the race

Could this stanza ring any more true? We've had our share of sure things blow up in our faces. We all know that this journey hasn't been easy, in many different ways. But luckily, we've won races and battles that we never thought we would win. Learning to say the "s" sound. Hearing rain drops for the first time. Raising her arm/shoulder above her head. Holding her head up straight. I could go on forever here. I know we'll continue to see things blow up in our face as this journey continues...but we'll be able to conquer and win the race. Because life's a dance you learn as you go...

Been knocked down by the slamming door
Picked myself up and came back for more

Yep, we've been knocked down. Stepped on. Kicked while down. Run over by a truck. Backed over by that same truck. But here's the thing...KENNEDY picks herself up and continues on. And we have no choice but to follow her. I only find my strength to come back for more through her. How she does it, I will never know. She is keeping her secrets on this close to the vest. But life's a dance you learn as you go...

But I learned something from my blue eyed girl
Sink or swim you gotta give it a whirl

No matter what we face on this journey, I consider myself to be damn lucky. Lucky to have this soul in my life. Lucky that I get to be her mom. Life with her truly is a dance that we are learning as we go. So are we doing the right thing? Am I right in letting her make the decisions? Is it fair all she has to go through to look like her peers? Well, I'm not sure...but sink or swim,we gotta give it a whirl. 

Strong. Brave. Patient. Courageous. Tough.

Strong. Brave. Patient. Courageous. Tough.

I heard these words today, all in the course of a two hour appointment, all describing Kennedy. I can't argue with any of them...they truly do describe her. And I couldn't be more proud of her in the way she portrays these words. But, it also breaks my heart that she has to portray them so often, in so many different situations, for so many different reasons.

Kennedy's sixteenth surgery is scheduled for November 2nd. No ten year old should ever have to say that. She has undergone life-saving surgeries and quality of life improvement surgeries. She has had good experiences and bad experiences. She has had painful surgeries and not-so-painful surgeries. She has had easy recoveries and difficult recoveries. But when it comes down to it, surgery is surgery. And frankly folks, she hates all surgeries.

I've been walking a fine line for the last two weeks, in my role as Mom. You see, and other moms can vouch for this, Mom is the toughest role to play in this journey. I'm the one who gets to make most of the medical decisions. I am the one scheduling all the dreaded appointments and even more dreaded surgeries. I am the one who has to play psychologist. I am the one who has to help her make the decisions that will forever affect her life. I am the talker, the tear wiper, the rationalizer, the fact giver. And honestly, it is a draining role at times.

But despite her hate for surgeries, and maybe thanks in part to my role as Mom, Kennedy has decided that she does indeed want her new ear. She does want the journey to continue. She does want to do this thing. So here we are preparing for yet another moment of strength, of bravery, of courage, of toughness.

I mentioned in my Team Kennedy post today that I'm fascinated by the prosthetic process. In today's appointment, pictures were taken of one side of her head and flipped to the other to check symmetry, a mold  was taken of her "good" ear so it could be matched, a plaster impression was taken of her affected side so they can have a model and make decision about where the implants for the ear will be placed. I wasn't allowed to take any pictures (so much for sharing everything with you), thanks to Kennedy's insistence, but let's just say the pink and purple goop combined with plaster didn't look like a fun experience. Not to mention all the grease and oil they had to coat her hair with so that the goop wouldn't stick. Despite the yuckiness of it all, it made us both excited and anxious to see the end result.

But long before the end result, we will be playing the surgery game yet again. Grandparents will come the day before. She will probably get a gift or two. We will probably go out to eat that night (and let's face it, I'll probably have a drink that night). We will hang out and Kennedy will stay up late. I won't sleep at all. We will all leave the house in the dark and head to the hospital. We will sit in pre-op forever, allowing Kennedy more time to worry. I will walk her back to the OR and kiss her as she goes off to sleep. I will cry as I have to leave her. I will hold my breath till they say she has been intubated. Her awesome doctors will work their magic. I will hold my breath till we hear she has been extubated. We will watch her go through hell in the recovery room as she wakes up. We will watch her fight an allergic reaction. We will eventually go home. We will wait and watch for an infection that we hope and pray doesn't come this time.

Between you (and you and you and you) and I, I think surgery will be the easiest part of the prosthetic process. It is extremely similar to her BAHA surgery from several years ago. That was her easiest surgery to date. We were home within an hour of surgery ending, she didn't even need Tylenol for pain, and she was up and playing by that evening. The biggest risk in this surgery is drilling too far and leaking brain fluid but that is extremely rare and these doctors have performed this surgery numerous times. Not to mention they have exact dimensions of the thickness of her skull. Sounds scary, but not gonna happen.

Going back to school with a bandage on her head? Eventually getting her ear and showing up at school suddenly with an ear? Having to answer all the questions? That's where this is going to be really hard. Yes, she's excited but this is going to be an emotional journey for her, without a doubt.

Sometimes I wonder if my Mom role of psychologist is enough to get us through these things. But then I look at how strong, how brave, how patient, how courageous, how tough she is. And I realize it doesn't matter what I do or what I say...she is who she is. And who she is is an amazing little girl.

Craniofacial Acceptance Month

Well, we're definitely off to a better fall than we were last year! And frankly, the year before that as well. Kennedy has made it to school every day for the first two weeks (as opposed to only one day out of the first two weeks), her GI issues have been at bay for months now (as opposed to plaguing her for months), and she is healthy (knock on wood!). And some day, we will win the war on this stupid skin graft site...mark my words! One year and counting...SIGH!


To my point! September is Craniofacial Acceptance Month. And so I challenge you to share in this special month in some way:

- Share Kennedy's story with someone...we can all learn from her courage and strength.

- Teach your children, your grandchildren, the neighbor kids, any kids to accept others for who they are, not for what they look like. Beyond the face is a heart.

- Explain to your children (and even more importantly the adults) in your life that staring, pointing, and whispering makes everyone uncomfortable. If they have questions, just ask!

- Stress that bullying is never tolerated anywhere for any reason. And bullying comes in many different forms. We may have grown up saying that sticks and stones may break our bones but words will never hurt us. But we all know that is total BS. Words hurt.

- Learn more about craniofacial syndromes and diseases -- I bet you have no idea how many are out there and to what degree they differ!

- Participate in a fundraiser (Cleft Palate Gallop is Saturday!!) to promote awareness and acceptance or donate to a craniofacial organization.

- Get together with us and share my hero for a day...I promise, you won't regret it.

The one thing I pray for the most concerning Kennedy is ACCEPTANCE. She will always look different. She will always hear different. She will always talk different. But she will always be beautiful with a heart of gold. Remember and teach: BEYOND THE FACE IS A HEART.

What Scares Me the Most...

In early June, I shared an old piece with you all about the day I watched my sweet blonde baby girl die, and thankfully be brought back to life. It was the five year mark of that dark, dark day in our world. What that anniversary gave realization of is how my worries, my fears have changed throughout this journey...

At 8am on September 11, 2001, I received a call from my doctor saying that test results weren't looking right, that she needed to see me no later than the next day to run further tests and start me on medication in an effort to prevent a miscarriage. A bad start to what would become a terrible, terrible day (for all of us). That day will always have double-meaning for me...in addition to the end of our country as we used to know it, it was also the official start of what would become this journey known as Kennedy. From Day 1, I knew something wasn't right. And when every test came back funky, I knew I was being validated in my feelings (even though every re-test came back normal). I spent nine months worrying and in fear that something was wrong with my baby, only to be reassured time and time again by my doctors that everything was fine.

Those worries and fears morphed into others on May 8, 2002 when this quiet, yet powerful, child entered my life. Obviously, my fears of something being wrong were proven true. Would she be able to hear? Would she be able to see? Would she be one of the many with heart problems? What does having only one kidney mean for a healthy future? Would she learn how to eat without needing a feeding tube? Would her brain be compromised due to extra fluid pockets? Would she be developmentally delayed? And the list of worries and fears went on and on and on and on and on. And we took it day by day, doctor visit by doctor visit.

The first couple of years were filled with learning everything we could, absorbing information from many, many doctors and trying to find her all the help we could get her. By age 3, my fears had turned into things such as: will she be able to get used to a hearing aid? will we ever be able to get her speech to a place where others can understand her? will she ever be able to function in school considering how painfully shy she is? what does the future hold in trying to figure out her newly worsening skeletal issues? what will be next in the laundry list of issues we continue to face?

Right after turning five, we handed our baby over for a major surgery which we knew included being sedated and on life support apparatus for three days in an effort to get her over the initial intense pain. What we didn't foresee is trying to pull her off of the life support only to watch her die in front of us. Thankfully, we also watched the doctors revive her and place her back on said life support. Would she wake up? Would she be our little girl? Would she need a trach in order to breathe long-term? Did the time without oxygen harm her in any way? Would she remember what she's been through? Would she survive? Luckily, she did wake up 6 days later and was able to breathe on her own. But would she survive the drug withdrawal? Would it have lasting effects? Would she be able to walk again? Talk again? Eat again through her mouth?

More than anything, this was a major turning point for my fears and worries. My biggest fear was losing her, watching her die again. It didn't help matters when nine months after watching her die and be revived that I was again watching a similar scene play out after a simple tonsillectomy - her lung collapsing, losing consciousness, being bagged, being put on life support, an intense lung infection. You start to ask yourself how much can one little body survive?

Although we never take a single surgery or its intended outcome for granted, I have recently realized that my fears and worries of losing sweet Kennedy have lessened. I will never let my guard down but we have had really good luck with recent surgeries (not necessarily the outcomes!) and only put our trust in doctors who will listen to our concerns, listen to her past history, and go out of their way to make sure that my baby girl survives anything that she has to endure.

The worries and fears never go away though, they only change. With Kennedy starting fifth grade, the end of her elementary era, I start to fear and dread the days of middle school that are soon upon us. Will she have her new ear by then? Will it help give her confidence? Have I instilled in her enough confidence to survive any teasing or bullying? Have I given her what she needs to stand up for herself in tough situations? Have I taught her the best ways to handle hurtful words or worse? How do I encourage independence yet insulate her from the cruel middle school world?

Then there are the fears and worries that live in the back of my mind and become clearer and louder with  each passing year: will she continue to excel in school? will high school and college be able to accommodate her needs? will she find true love someday, someone who accepts her for who she is? will she be able to have the babies that she wants to have (besides only one kidney, many with her syndrome have problems with reproductive organs - we haven't gone there yet)? will she use her experiences to help others in a positive way like I hope she will? will her medical issues level out at some point? will they stop multiplying? will life be easier for her as an adult? will she find happiness? will she hate me for any decisions that I've made along the way?

We all have worries and fears about our kids, it is only natural. I know from my own experience, that my worries about Kennedy are so different than those I've had for Katie. That having a child with any kid of special needs brings an entirely different set of fears. But luckily there is a solution for keeping these fears in check. Martin Luther King, Jr once said "We must build dikes of courage to hold back the flood of fears." Luckily for me, Kennedy is the epitome of courage :).