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 :).

A View from a Friend...

Today's blog post is written by guest writer Pam Dardess, one of the most important people in my life. The more I think about it, the more I know we crossed paths when we did for a reason. She lived through my daily pregnancy battles with Kennedy, helped me get through the first days and months and years of adjusting to a child with special needs,  has spent countless hours sitting with me in hospital surgical waiting rooms, has cried with me and laughed with me and yelled with me, has been my rock through it all. 

A while back, Amy asked me if I would write a guest post for her blog. I agreed immediately, honored that she would even ask. And then the time passed. It passed because I’m a busy mom of a new baby and a 7-year old. It passed because of work. It passed because of home and chores and all the other mundane things we do in our lives. But it also passed because I knew this wasn’t something I could sit and write in 10 minutes, or even 20 or 30. Amy gave me carte blanche to write what I wanted. And that’s been the hardest part. I want to do justice to the beautiful writing and stories she’s given us all on her blog. I want to do justice to her amazing family. I want to do justice to a certain little blond-haired girl.

But most of all, I want to do justice to Amy. So, because she won’t say these things, let me write about her.

I met Amy when she became my officemate. My first impression of her was that she was quiet, and I wondered how we would get along. Then she hung pictures up on the bulletin board on her side of the office. I saw Amy with this cute little brown-haired girl with big eyes. And I began to find out how much strength Amy’s quiet exterior hides.

When Amy got married to Ryan, she asked me to be a reader at the wedding. It was a beautiful ceremony and a gorgeous day. Several months later, Amy was in the throes of morning sickness. Throughout her pregnancy, Amy would say that she didn’t feel like things were the way they should be. I brushed off her comments, telling her that everything would be fine, it’s normal to worry, no big deal.

On April 6^th, 2002, Amy traveled from NC to MD to attend my wedding, despite the fact that she was 9 months pregnant. On May 8^th, 2002, Kennedy Grace Goodwin was born. And we all learned that there is nothing more powerful than a mother’s intuition. Despite ultrasounds that didn’t detect any issues, Kennedy was born with a missing ear and other issues that Amy and Ryan wouldn’t even know about until later.

The first time I saw Kennedy was in the hospital, the first day of her life. She was so small and adorable, wrapped up just like a burrito. She was a sweet baby who didn’t even cry as I sat in a rocking chair and held her in my arms. She had one ear that “looked like a flower” as her sister said – and also like her sister said, that was okay.

I left that first day not really understanding the journey that would be ahead for Kennedy and her family. I soon found out that Kennedy had to be sent to the NICU due to trouble breathing when she was eating. To this day, I have such a clear memory of visiting the hospital - Amy, still recovering from her c-section, going in to visit her baby girl. Katie, too young to be allowed into the NICU, peering through the window with silent tears rolling down her face.

In the days, weeks, and months that would follow, I’d get to find out more about Amy’s strength. Doctor’s appointments, surgeries, decisions, worries. And yet, in spite of what was going on in her life, Amy was always there for me when I needed her.

On a summer day in June 2007, I was sitting at my desk at work. I had moved on to a new job by then, but Amy and I had moved far beyond just being officemates by that point. My phone rang, and I heard Amy. I don’t remember what she said, only that I could hear the sobbing in her voice. I asked if she was ok. And for the first time I can remember, she said “no.” Through tears, she said they had tried to extubate Kennedy after days of keeping her sedated following a surgery. Kennedy had stopped breathing. They resuscitated her, and now she was intubated again. I told her I would be right there.

I will never forget that day at the hospital. I scrubbed my hands up to the elbows so that I could go into the PICU. Only two could go in at a time, so Ryan took a break so that I could see Amy and Kennedy. And there was this little girl, hooked up to every machine imaginable. Her face was swollen, her body so small. I felt tears prick my eyes and tried to blink them back. I hugged Amy and watched her cry.

Amy will say that she is changed after that incident. Maybe so – but I think she just became “more Amy.” The appreciation for life, her willingness to go to the ends of the earth for her girls, her compassion, her grace, her perseverance – it was all there before.

Amy has given her youngest daughter a great gift – because she’s passed on her quiet strength to Kennedy. Kennedy is not a kid who has a “poor me” philosophy about life.  Kennedy is more than her ear, or her surgeries, or her syndrome. Above all, Kennedy is just a kid – and those are my endearing memories of her. I remember almost 3-year old Kennedy sitting on the sofa in our apartment, holding my daughter Lea as a newborn. I remember Kennedy and Lea playing in a baby pool together in my backyard, and on the swing set in Amy’s back yard. I think of my daughter Maya’s smiles as Kennedy coos at her. I see our girls growing older, seeking independence, finding their way in the world.

One of the things I admire most about Amy is her ability to create a community around her.  If you need proof of what Amy can accomplish, look around at Team Kennedy. We’re hundreds strong on Facebook. We turn out in force in our Team Kennedy t-shirts for charity walks, donation drives, and Kennedy’s surgeries. Amy has taught me that it is a sign of strength, not weakness, to ask for help. She has taught me that there is strength in numbers. And, more than anything, she has taught me that someone who isn’t related to you can be a sister just the same.

The Day My World Almost Stopped Turning...the 5 Year Anniversary

Many of you have probably read this in the past. In some ways, it is hard for me to believe that it has been five years ago since this horrific day. I can honestly say that I can still hear the sounds, see the sights, and feel the emotions just as much today as I could five years ago....


Motherhood is the best thing in the world. Motherhood can also be the worst. How helpless we feel when our babies are hurt and suffering and we can do nothing to help. A hot day in June 2007, a sterile hospital PICU room. My baby has been on life support for 3 days for pain relief. Everything looks good and she has been fighting her way out of sedation. All signs say that it is time to remove the life support and let her wake and breathe on her own. So Ryan and I stand near her bed, ready to try and soothe her as she comes to. The last time she saw us, she was being wheeled away to the operating room in tears. That was three days ago. This will be scary for her, we're sure. 


The doctor pulls the ventilator tube. Her stats fall immediately. The machine is beeping frantically as she slips more and more in distress. The doctor yells for the bag - "we have to bag her now!" They place the bag on her mouth and it fills with blood. Her body is convulsing all over the table. Her poor, sore body that just went through utter hell under the knife. The machine is beeping even more frantically now. The doctor and nurses are all stressed yet like a well-oiled machine, work together to help save this life. 


They try to make me leave. I refuse. I sit in a chair, holding Kelki (Kennedy's lovey), crying, and I refuse to leave. This wasn't supposed to happen. She was on life support for pain relief - not for life support! They have to tube her again but its hard to get the tube in. She's still convulsing due to her body fighting against lungs that held no air, she's completely blue in the face, her mouth and face are covered with blood, her stats are still near 0. In that moment, my baby is dead. In that moment, my world stopped turning. In that moment, I was experiencing the worst day, hour, minute of my life. I had never felt more scared, more helpless, and never more shaky in my faith. Her doctor finally got the tube back in. She stopped convulsing. Her stats started going back up. Color returned to her face. That doctor was my hero. Will always be my hero. 


But what the hell happened? Her vocal cords had swelled immediately after the tube was pulled due to irritation from the tube. They blocked her airway entirely. And as her lungs were fighting for air, they were pulling blood in from every nook and cranny of her body. You've heard of a violent death? I had just watched one. And I hope that I never have to see another.

Things changed. Being on life support for pain relief vs. life support for living were entirely different ballgames. This one was by far the worst. And her several minutes without oxygen - what did that do to her brain? 6 looong days we waited. Many set-backs a long the way, many hours at the hospital, many sleepless nights. And then she fought her way out of sedation, she breathed on her own and it was time to try again. After 9 days on the vent and sedation drugs - you'd be surprised how much medicine kids require to keep them down - she was going to wake up. I made the agonizing choice to wait in the hall. Although, I wanted and needed to be there, I couldn't watch her die again. If this was going to be it, it was going to be a violent death again, not a peaceful one. I just couldn't face it. Ryan was with her and after what seemed like forever, the nurse finally came to tell me that someone needed Mommy. My angel was awake. And she remembered us. She went through hell and back after that - drug withdrawal as intense as a lifetime heroin user faces (nothing like a 5 year old needing heavy doses of Methadone), learning to walk, talk, and eat again, two more surgeries to fix and remove hardware, almost a month in the hospital, etc. Another day, another story. 

A mother has to have faith in order to survive. I have faith in my family, in the doctors that are so entwined with our lives, and in guardian angels. And faith that children are angels themselves - created out of love and in need of nothing more than a mother's love. Motherhood can be the worst thing in the world. Motherhood can also be the best. 

Looking Back at a Decade....

Ten years. A Decade. Wow. In some ways, it seems like we just started on this journey. In others, it seems like this journey has been underway for many more than ten years. Here's looking back to the very start of the journey...

Birth Day. It's amazing how after all this time, I can still remember parts of that day with vivid detail and emotion. I will be the first to tell you that Birth Day isn't always a day filled with happiness. And what starts as happiness can turn to panic, fear, worry, and sadness in a heartbeat. And what should be tears of joy can quickly turn to tears of anguish when your baby is whisked away "for some testing."

Sitting alone in the recovery room, waiting for Ryan to tell all the excited family members in the waiting room, no word yet from the doctor, reeling from a devastating blow that my baby wasn't "normal"...that was a lonely place to be. And I will forever have a place in my heart for Robin, the recovery nurse. She cried with me. She held my hand. And her simple words of "There is no definition of normal" I carry with me still.

When I finally held my baby, my tears of anguish were finally replaced with tears of happiness. Trying to absorb what the doctors were telling us, trying to accept it all for what it was, trying to be okay with things...that was a difficult place to be. But the love I had for this child, whether she was my normal or someone else's normal, was enough to get me through it. She was beautiful to me.

We spent the rest of the day with family and friends meeting her, learning what our future may hold, and just trying to move on. There were pictures, there were tears, there was laughing. Then there was choking. And turning blue. And doctors rushing my sweet baby into the NICU. And our new normal took another turn on the journey.

Craniofacial babies sometimes have trouble eating, we were told. So it was a slow process of teaching her how to eat, and how to eat without aspirating. All the while knowing that if she couldn't get it down, a feeding tube would be in order. Knowing that our new normal was going to be a lot of waiting and seeing how things go.

On Mother's Day, I was released from the hospital. Kennedy was still in the NICU. Talk about gut-wrenching. I sobbed. I retreated to myself. To say the least, that day sucked and will go down in the books as being the worst Mother's Day. But I still have the Mother's Day card that the NICU nurses made for me, framed in my bedroom, so I can remember those feelings. For me, it is important to remember these moments, to remember that things could always be worse.

For several days after, I made the twice a day journey to the NICU, all while trying to recover from a c-section. Poor little Katie was finally allowed in the NICU to see her baby sister whom she has not seen since the day she was born. And after a long week of waiting and seeing, my sweet baby Kennedy was finally allowed to go home. With no feeding tube. Our first small victory.

I won't lie and say it was an easy diagnosis to be handed. Or an easy thing to swallow and move on from. The not knowing what the future would hold made it that much harder. When you take your baby home for the first time, it is all about learning who they are, not sleeping, and changing a bazillion diapers. But we added in a lot of research, making a lot of doctor appointments, and worrying about more than the normal things. Not to mention stares from strangers, some of our friends not knowing what to say or how to handle the situation, and trying to make sure that her big sister was okay with everything. But as it turned out, it was her big sister that taught me how to be okay with it. When I read her story that she shared with her class about Kennedy's birth, including the line "She only has one ear, but that's okay." That's when I knew that it was going to be okay. If an 8 year old could so easily accept this all, then so could I.

Little did we know at that time where this journey would take us. Little did we know what the first ten years of our baby girl's life would bring. We've had ups and downs. We've had ins and outs. We've had happiness and sadness. We've had relaxation and stress. We've cried tears of joy and tears of anguish. We've survived 15 surgeries and multiple hospital stays. We've watched her die once and come close a second time. We've battled chronic illnesses and have even won against some. We've been in and out of more doctor offices than I can even keep track of, some that we love and some that we will never visit again. And although I would do anything to save her from all that she has to go through, I wouldn't trade her for the world.

So on this day, the 8th of May, I wish a Happy 10th Birthday to my spirited, sarcastic, feisty, intelligent, strong, beautiful, blue-eyed, blond-haired hero. May the next ten years be easier on you (and less stressful on me!). And may this journey continue on a good path, providing only hope and promises for a happy, healthy future. Happy Birthday Kennedy Grace. I love you with all of my heart and soul.

A Wall Has Been Hit

Sometimes, it is all too much. Have you ever gone on vacation and eaten every meal in a different restaurant? And when you got home, you couldn't even think about eating in a restaurant for awhile? That the the thought of having to pick one that sounded good, drive there, pick something off the menu...it was all just too much?

That's where I am with Kennedy's journey. I don't know exactly what the trigger was, but I've hit the proverbial wall. In the last few weeks, I have cancelled orthodontic appointments to get some gear in place, an allergy testing appointment, a GI follow-up appointment, and a consultation appointment for having teeth pulled. Not to mention that we're supposed to be talking to folks about a prosthetic ear. But I can't even fathom at this point picking up the phone and rescheduling.

And if that makes me a bad mom, for not getting my child the care that others thinks she needs, then so be it. Because frankly, I think she needs a break too. Each appointment takes something out of her and I hate to watch it. She has to psyche herself up for days before going to any appointment, she stoically gets through them, then she doesn't want to think about it again. If things are discussed during an appointment that she doesn't want to hear about (possible surgery, allergy testing, shots, new medications), she totally tunes it all out. And getting her to open up about what's on the medical horizon gets harder and harder the older she gets.

And I'm just tired of it all.

Kennedy once made the comment to me that she was glad she didn't have something like cancer, where she would have to go to the doctor all the time until it was gone (and don't get me wrong, I'm glad of this too). But what she doesn't realize is that she is doing the same thing on a much wider scale (many more specialists) and hers will continue for the rest of her childhood and beyond. She will always have to stay on top of her GI issues. And her immune issues. And her scoliosis/kyphosis issues. And her hearing issues. And her vision issues. And her dental issues. And the myriad of other issues that go hand and hand with Goldenhar.

My whole point is to say that it is okay to hit the wall. It is okay to let the wall stop you momentarily. It is okay to be tired of it all. It is okay to take a break. Because if you've reached that point, then the only way to continue on is to take that break. It is a way to renew your strength. It is a way to focus on the necessary. It is a way to make yourself whole again. And let me tell you, it took me a long time to realize that this is all okay.

We've been through a lot in the past nine or so months. And maybe that is the trigger for my hitting the wall. No matter, I'm thankful that we're finally at a point where I can let the wall stop me momentarily. I'm thankful there isn't anything serious that we need to deal with in the here and now. We still have a long way to go - prosthetic ear, smile surgery, loads of orthodontic work, painful jaw surgeries, spinal fusions, neck surgeries. But for now, I'm going to lean against this wall and take a break from it all and let Kennedy be a kid. Soon enough we will pick ourselves up and climb over that wall and continue on with our journey.

(NEXT BLOG: Surprise Guest Writer!)