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.
Wednesday, December 5, 2012
Friday, October 5, 2012
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.
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.
Thursday, September 6, 2012
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.
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.
Thursday, July 12, 2012
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 :).
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 :).
Monday, June 18, 2012
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 6th, 2002, Amy traveled from NC to MD to
attend my wedding, despite the fact that she was 9 months pregnant. On May 8th,
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.
Monday, June 4, 2012
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.
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.
Tuesday, May 8, 2012
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.
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.
Thursday, April 19, 2012
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!)
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!)
Thursday, March 15, 2012
Here we go again...
Twas the night before surgery and all through the house, not a creature was stirring...except this Mama Bear.
Once again, I find myself on the eve of surgery. One would think this would get easier. I mean, this is the 15th time I've been here. But honestly, it only gets harder.
If I think back far enough, I can vaguely recall the eve of her first surgery, seven long years ago. She was two and had to have a lot of dental work done due to no enamel on her baby teeth. Because she was only two, the dentist insisted on doing it all at once under general anesthesia. Although a lot of work, "simple" dental surgery was how it was referred. Little did we know that simple didn't exist in Kennedy's world.
We weren't worried so much. Sleep came easy that night for all of us. And that was probably the last eve before surgery that I actually slept. The nightmare started with trying to get her calmed down enough to take the calming Versed. Then watching her be put to sleep. Then fighting with the dentist as she wanted to do more and more as precautionary measures. Then watching as Kennedy woke up. Then waiting to try and get her stabilized. At one point, I sat down in the hallway and just lost it. Due to the idiotic rules, only one parent was allowed in recovery at a time (did I ever mention that my daughter will never have surgery at UNC hospitals again? this is only one of many, many reasons), which meant you were either watching her struggle to breathe or waiting in the hallway not knowing what was going on...neither was fun. They finally stabilized her enough to send her home, only for us to rush back to the ER the next day with a partially collapsed lung. Yeah, simple just doesn't exist in Kennedy's world.
That surgery nightmare gave us a little glimpse of what future surgeries would be like. So when she had her second surgery at age 5, we were ready. Or so we thought. Our parents learned not to wait at home for the all clear phone call, being there is where they needed to be for their own peace of mind. So we filled the waiting room (and continue to do so for every surgery). I prepared Kennedy as best I could, leaving out the part that she would be in a medically-induced coma for three days to avoid the worst pain (telling a 5 year old that they wouldn't wake up for 3 days...I didn't think that was a great idea). I didn't sleep the night before, my mind in overdrive thinking it all through. She needed this surgery to save her life, this I knew. But in the end, this is the surgery where we learned that intubating her was extremely difficult due to her airway anomalies, and that extubating her could prove to be fatal. Luckily we were in a great hospital with a great PICU doctor and they saved my baby. Six more days of life support and medical coma - a lot to survive. But we did.
This is also the surgery where I learned that my time spent sleeping in a hospital could increase dramatically so always be prepared. I finally left the hospital on Day 7, and only because someone convinced me that I needed puppy love. I celebrated my birthday that year in a hospital room. What was supposed to be one surgery and a 5-day hospital stay turned into three surgeries and 23 days...so ultimately I learned to never expect the best case scenario. I can hope for it, but I should always prepare for the worst. And never expect simple.
Then surgery #5 came not even a year after the last fiasco. Again, due to her severe sleep apnea this was another life-saving surgery. Sleep the night before? Ha! Watching Kennedy die was still fresh in my mind (little did I know that those 10 minutes would forever be seared so deep in my memory). Not to mention, we were heading back to UNC hospitals and I was starting to have second thoughts on having surgery there. A "simple" T&A. That damn word again. Thousands of kids get their tonsils out every week and they are home the same day. Leave it to mine to end up on life support for a week, with a collapsed lung and a strep pneumonia infection and two years of constant sinus infections due to it all. I blame all of this on the hospital 100%, but still...no simple here.
Not to mention the other surgeries where intubation/extubation have been difficult, breathing rates have been hard to keep at 100% following surgery, and infections have been rampant...this is where I'm coming from tonight. About four surgeries ago, I gave up even trying to sleep. I read, I watch boring TV, I facebook. And now, I blog.
And tonight I HATE. Yes, it is a strong word but it is the only word that truly describes how I feel on these surgery eves. I hate this syndrome that Kennedy was born with. I hate that Kennedy has to go through this. I hate to make these damn decisions, whether it is life-saving or for quality of life. I hate watching her go through all this. I hate waiting for them to take her back to the OR. I hate having to tell her goodbye while tears are streaming down her cheeks. I hate waiting to hear that she was successfully intubated without a stop in oxygen. I hate waiting in the waiting rooms with others who aren't always respectful of others who are waiting. I hate when they are trying to extubate her. I hate watching her wake up out of anesthesia. I hate all the pain meds that have to be pumped into her as her tolerance to them is high. I hate the allergic reactions that come quickly and then reappear with a vengeance several days later. I hate the night after surgery when sleep is hard for her. I hate hospitals. I hate watching her oxygen for hours, hoping and willing it to stay in the high 90s. I hate the stress that comes with all this. I hate that she has to be so damn strong when she's only little. I hate that I have to lose focus on my other child to get this one through it all. I hate the nightmares that these surgeries bring to Kennedy's nights. I hate that this has to be Kennedy's life. I hate, I hate, I hate.
But through it all, I love. I love that my child is alive due to modern medical technology. I love that we are surrounded by great hospitals and medical care. I love that we have found awesome doctors who care about Kennedy as a person, as a child. I love that we are able to afford the medical care she needs. I love that our families rally and are here for us. I love that my friends never let me down. I love that people pull through and show Kennedy love and support in her darkest hours. I love that I am Kennedy's mom and can help her through all of this while trying to make the rest of her life the best it can be.
There is no comfort to be found tonight. There is no peace to be had. There is no silver lining at this moment. There is no sleep that will come. Those will come tomorrow once surgery is over and we are home. Because truly, my life is good and I am blessed. But for me, this is my night and mine alone (except I'm sharing with you so maybe this isn't entirely accurate). To hate the world. To ask "why me?" and "why Kennedy?" To wonder and wish for better things to come. To play back this journey on rewind and watch it again, making myself remember and revisit things that I don't want to. Because if I have to watch my baby in pain tomorrow, then I only deserve to be in pain myself.
And as always, prayers, well wishes, good thoughts, and positive energy are welcomed. Not sure if it takes a village to raise this child but it takes a village to get me through it.
(NEXT BLOG: I'll surprise you. Not sure yet where to take you next.)
Once again, I find myself on the eve of surgery. One would think this would get easier. I mean, this is the 15th time I've been here. But honestly, it only gets harder.
If I think back far enough, I can vaguely recall the eve of her first surgery, seven long years ago. She was two and had to have a lot of dental work done due to no enamel on her baby teeth. Because she was only two, the dentist insisted on doing it all at once under general anesthesia. Although a lot of work, "simple" dental surgery was how it was referred. Little did we know that simple didn't exist in Kennedy's world.
We weren't worried so much. Sleep came easy that night for all of us. And that was probably the last eve before surgery that I actually slept. The nightmare started with trying to get her calmed down enough to take the calming Versed. Then watching her be put to sleep. Then fighting with the dentist as she wanted to do more and more as precautionary measures. Then watching as Kennedy woke up. Then waiting to try and get her stabilized. At one point, I sat down in the hallway and just lost it. Due to the idiotic rules, only one parent was allowed in recovery at a time (did I ever mention that my daughter will never have surgery at UNC hospitals again? this is only one of many, many reasons), which meant you were either watching her struggle to breathe or waiting in the hallway not knowing what was going on...neither was fun. They finally stabilized her enough to send her home, only for us to rush back to the ER the next day with a partially collapsed lung. Yeah, simple just doesn't exist in Kennedy's world.
That surgery nightmare gave us a little glimpse of what future surgeries would be like. So when she had her second surgery at age 5, we were ready. Or so we thought. Our parents learned not to wait at home for the all clear phone call, being there is where they needed to be for their own peace of mind. So we filled the waiting room (and continue to do so for every surgery). I prepared Kennedy as best I could, leaving out the part that she would be in a medically-induced coma for three days to avoid the worst pain (telling a 5 year old that they wouldn't wake up for 3 days...I didn't think that was a great idea). I didn't sleep the night before, my mind in overdrive thinking it all through. She needed this surgery to save her life, this I knew. But in the end, this is the surgery where we learned that intubating her was extremely difficult due to her airway anomalies, and that extubating her could prove to be fatal. Luckily we were in a great hospital with a great PICU doctor and they saved my baby. Six more days of life support and medical coma - a lot to survive. But we did.
This is also the surgery where I learned that my time spent sleeping in a hospital could increase dramatically so always be prepared. I finally left the hospital on Day 7, and only because someone convinced me that I needed puppy love. I celebrated my birthday that year in a hospital room. What was supposed to be one surgery and a 5-day hospital stay turned into three surgeries and 23 days...so ultimately I learned to never expect the best case scenario. I can hope for it, but I should always prepare for the worst. And never expect simple.
Then surgery #5 came not even a year after the last fiasco. Again, due to her severe sleep apnea this was another life-saving surgery. Sleep the night before? Ha! Watching Kennedy die was still fresh in my mind (little did I know that those 10 minutes would forever be seared so deep in my memory). Not to mention, we were heading back to UNC hospitals and I was starting to have second thoughts on having surgery there. A "simple" T&A. That damn word again. Thousands of kids get their tonsils out every week and they are home the same day. Leave it to mine to end up on life support for a week, with a collapsed lung and a strep pneumonia infection and two years of constant sinus infections due to it all. I blame all of this on the hospital 100%, but still...no simple here.
Not to mention the other surgeries where intubation/extubation have been difficult, breathing rates have been hard to keep at 100% following surgery, and infections have been rampant...this is where I'm coming from tonight. About four surgeries ago, I gave up even trying to sleep. I read, I watch boring TV, I facebook. And now, I blog.
And tonight I HATE. Yes, it is a strong word but it is the only word that truly describes how I feel on these surgery eves. I hate this syndrome that Kennedy was born with. I hate that Kennedy has to go through this. I hate to make these damn decisions, whether it is life-saving or for quality of life. I hate watching her go through all this. I hate waiting for them to take her back to the OR. I hate having to tell her goodbye while tears are streaming down her cheeks. I hate waiting to hear that she was successfully intubated without a stop in oxygen. I hate waiting in the waiting rooms with others who aren't always respectful of others who are waiting. I hate when they are trying to extubate her. I hate watching her wake up out of anesthesia. I hate all the pain meds that have to be pumped into her as her tolerance to them is high. I hate the allergic reactions that come quickly and then reappear with a vengeance several days later. I hate the night after surgery when sleep is hard for her. I hate hospitals. I hate watching her oxygen for hours, hoping and willing it to stay in the high 90s. I hate the stress that comes with all this. I hate that she has to be so damn strong when she's only little. I hate that I have to lose focus on my other child to get this one through it all. I hate the nightmares that these surgeries bring to Kennedy's nights. I hate that this has to be Kennedy's life. I hate, I hate, I hate.
But through it all, I love. I love that my child is alive due to modern medical technology. I love that we are surrounded by great hospitals and medical care. I love that we have found awesome doctors who care about Kennedy as a person, as a child. I love that we are able to afford the medical care she needs. I love that our families rally and are here for us. I love that my friends never let me down. I love that people pull through and show Kennedy love and support in her darkest hours. I love that I am Kennedy's mom and can help her through all of this while trying to make the rest of her life the best it can be.
There is no comfort to be found tonight. There is no peace to be had. There is no silver lining at this moment. There is no sleep that will come. Those will come tomorrow once surgery is over and we are home. Because truly, my life is good and I am blessed. But for me, this is my night and mine alone (except I'm sharing with you so maybe this isn't entirely accurate). To hate the world. To ask "why me?" and "why Kennedy?" To wonder and wish for better things to come. To play back this journey on rewind and watch it again, making myself remember and revisit things that I don't want to. Because if I have to watch my baby in pain tomorrow, then I only deserve to be in pain myself.
And as always, prayers, well wishes, good thoughts, and positive energy are welcomed. Not sure if it takes a village to raise this child but it takes a village to get me through it.
(NEXT BLOG: I'll surprise you. Not sure yet where to take you next.)
Friday, February 24, 2012
Coping: It's Just Something Ya Gotta Do
cope
1 verb1. to struggle or deal, especially on fairly even terms or with some degree of success
2. to face and deal with responsibilities, problems, or difficulties, especially successfully or in a calm or adequate manner
Someone recently told me that they are having a hard time coping with all that their child has been going through and asked how I cope with our journey. So I thought, great blog idea. Easier said than done, let me tell ya. I've tried for weeks to sit down and write this. But coping...it is truly a personal topic for me. Do I really want to share that much of myself? Do people really care?
But here I am. And although I'm probably going to hold back a little, my hope is that by sharing what I do, others can somehow take from that. Even if it is to say that she copes all wrong and I don't want to be like her :). Because in the end, when you have a child with special needs, you're going to need to cope. A lot.
In my world, there is coping on two different levels: acute coping (in the moment during surgery scheduling, surgeries, hospital stays, etc.) and chronic coping (the everyday worries and issues related to Kennedy's journey). I used to think that the acute coping was the worst, how could it get any worse. But the more we journey on, the more I think that the chronic coping is what's going to stress me to death.
We all cope. I mean, what's the alternative? But what I've learned, even within just my own household, is that we all cope differently. I usually keep everything inside, letting it build up, till the tears start flowing and I can't hold them any longer. One of my best friends recently posted that she does her best thinking in the shower. Well, I do my best crying in the shower. And I'll admit, I do it on a regular basis. I think it goes back to several posts ago with the picture saying that we cry because we've been strong for too long. I am strong every damn day in this journey of Kennedy's. But my strength can only take ME so far. And unless I refuel, I can't continue to be strong for her. So I take a shower, and I cry. And cry. And cry some more. Then I find the silver lining in the current situation and I journey on. Just remember...don't be afraid to cry.
And then I read. A lot. My husband often compares my reading to his iPhone addiction. I've been made fun of because I prefer murders or other fictional mysteries instead of non-fiction or reality books. But here's the thing: I read to lose myself in the book. I face reality everyday, I need something else to help escape it. If I'm rooting for the victim to outrun the serial killer, then I'm not thinking about the surgery appointment I need to schedule for Kennedy. Find something to lose yourself in, even for short periods of time.
My faith has surely changed since Kennedy was born and continues to change as we continue on this journey. I'm a very firm believer that what I choose to believe or not to believe is my personal choice to make and I won't share. But the constant of my faith has always been praying to Kennedy's guardian angels. Her angels have certainly pulled her through some pretty rough patches and I strongly believe that my grandmother was leading the way. In fact, Kennedy once said that she knows that Nonny is her guardian angel...because she saw her in the OR. Kennedy is surrounded by people she loves here on earth, and I know that her guardian angels are always watching over her. That makes coping just a little bit easier. Find faith in something, anything, so that you can draw upon it when you need it.
This blog has been cathartic for me, no matter how tough reliving some of this journey has been. To step back and think it through, to share with others, to learn that something I've said has touched or inspired someone...it really does warm my heart and helps me know I'm doing the right thing. Even if it helps only one person, I've made a difference to someone. Share your story, people really do care and they can take something away from it to help them in their own lives.
To deal with chronic coping, I've learned that whenever I have a chance, I need to get out and go. I've heard all the comments about how many trips and vacations we take, how can we afford it, we're spoiling our kids, etc. First of all, I've watched my child die (and thankfully brought back to life) and I know how precious life is. It can be taken away at any time so make memories when I can. Second, and probably more important, is that when you deal with everyday stress (hearing issues, speech issues, severe chronic constipation, chronic sinus issues, and on and on), you never get a break from it unless you make a break from it. And that folks, is why you'll always find me planning our next trip. I need it, Kennedy needs it, we all need it. Find a happy place, no matter where or what it is, and go there as often as possible.
One of the hardest things that I've learned in exploring coping mechanisms is that I have to be ready and willing to call on friends and family. This is where you learn who your true friends are. Because they will do anything for you and do it without expecting anything in return (of course, I try to pay people back as much as I can but there are some things that I honestly will never be able to pay back -- that's how awesome my friends and family are). It isn't easy for me to rely on others but I need them if I'm going to cope. If I'm going to get through something, I know I can't do it by myself. I need to be surrounded by those who love me. Surround yourself with positive people you love and who love you, build an awesome support system.
What I've realized in the last few years is that above all else, I have to take care of myself. I've realized that stress and constant coping can kill you if you aren't careful. It seems that I keep adding to my arsenal of prescriptions and all ailments can be triggered or made worse by stress. The first time I met with my cardiologist he told me I needed to remove the stress from my life and I asked if he was in the market to adopt a 7 year old child. He told me that my answer was the reason he no longer says that to his patients (see, I made another difference in someone's life! :) We all have stress, no matter what it is. Between the chronic and acute coping in my life over the past 10 years, my health has taken a beating. Luckily, I realized this before it was too late. But probably lost some ground in putting myself last for so long. Take care of yourself first...who will take care of your special needs child (or whatever you are coping with) if you aren't around?
And most importantly, I draw strength from Kennedy. Katie is the light in my world and Kennedy is my strength. For those who know her, have you ever met a stronger person? To cope, look to the one or the thing that is making coping necessary. Chances are, that's where you'll find your strength. Its where I find mine.
Refer back to definition of coping above...the key word in the definition is "success." We all cope, it's just something ya gotta do. And we all cope differently, whatever works for you. But coping successfully takes patience, love, support, strength, and faith. I don't know that I always cope in the right way, but I continue to survive. So I must be doing something right.
(NEXT BLOG: Here we go again...)
Sunday, February 5, 2012
A Sister's Perspective
This blog post was written by Kennedy's big sister, Katie. When it comes to sisters, I think Kennedy really lucked out...
When I was eight years old, my little sister, Kennedy, was born. My family was all so overjoyed that we hardly noticed that her appearance wasn’t completely normal. Kennedy was born without her right ear due to Goldenhar Syndrome, a congenital craniofacial disorder. Little did we know that it wouldn’t be an easy fix, and that there were going to be many other medical issues that went along with it.
Adjusting to life with a sibling with medical problems was a challenge, and it still is. However, it has taught me that others come first and to not take any day or any thing for granted. Sure, we fight, we argue, we annoy each other; we’re normal sisters. But what makes us different is that we’ve both gone through the hard times.
The hardest for me was the first ear surgery in October 2010. Having to leave the hospital before the surgery was done to go be in my school’s parade as well as not having my mom be there to see me on Homecoming court was really tough. But I think of my end of it and I realize that I don’t have anything to complain about.
I would do anything for Kennedy; she is an amazing little kid. Having seen firsthand her struggles over the years, I know it’s not something I could go through. For that she is a hero-my hero. I am so grateful to have her as my sister. She has taught me a lot of life lessons that I’ll never forget. I love her and I cannot wait to see what the future has in store for our relationship.
(NEXT BLOG: Coping: It's Just Something Ya Gotta Do)
Tuesday, January 17, 2012
A Ten Day Ride on the Roller Coaster of Hell - Part II
When we left off, we were ending the weekend hoping for the best case scenario: home by Tuesday, back at school by Wednesday. We were ready to be home, no matter what ear we were leaving with, and this was promising. We were "surprised" when my parents showed up Sunday night, ready to fill in where needed. I had been keeping them at bay as my mom had literally just left after being here for more than two weeks and they were preparing to leave on an international trip. However, when I called home early Sunday afternoon, and then again a couple of hours later, with no results...I knew they were on their way. And sure enough, they showed up just in time to dine in their favorite restaurant, the Duke Hospital Cafeteria.
We spent the holiday Monday trying to keep Kennedy distracted. Distracted by the bad news of her ear not cooperating, and from the anticipation of going home. With my parents now there as reinforcements, Ryan's mom headed home...she had been on hospital duty since Wednesday (which I forgot to mention in Part I, was Ryan's birthday...we celebrated with a pizza and cake party in the room!). Andrea, Brad and Megan all came and spent several hours with Kennedy. We claimed a corner of the cafeteria and spread out with games, crafts, and of course ice cream. The amount of ice cream we ate from the cafeteria was excessive by this point!
Things were no better with Kennedy's ear on Monday evening and we were literally just playing a waiting game to go home at that point. We played a lot of cards that evening, again trying to distract and waste the hours away. We started sending things home with my parents that night...you can't imagine how much we accumulate doing a week plus hospital stay. Things from home, things friends leave to help occupy time, things for Ryan and I, homework and school books, gifts and balloons from visitors and other. The piles never end.
Then. Came. Tuesday. My dad left bright and early to head back to Ohio. Mom was staying to help with Kennedy and to help get our lives back to normal. My mom stayed home instead of coming to the hospital since we were coming home. And since mom didn't need a ride over, and since I would be coming home soon (our usual rule is that if we stay all night, we get to go home and rest or shower or whatever in the morning while the other steps in), Ryan went on to work.
At the 5am wake-up, Dr. Marcus' team thought she would be going home. Yay! But then Dr. Marcus came. And after looking at her ear, and realizing that the oral antibiotics were doing absolutely nothing (another battle with the ID docs!), he strongly suggested that we have one more surgery....to remove the ear, to remove the MRSA infection. This was hard to hear. We knew the ear wasn't what we wanted. But it was something. We had something to show for all the pain and suffering that we had been through. And when I say we, I mostly mean Kennedy.
Even harder for me as a parent was what I did next. And that was to explain to Kennedy and tell her that it had to be her decision. No parent wants to put this type of pressure on their nine year old child, let me tell ya. It broke my heart to do it. But I couldn't make it for her. I had made the decision of what her face should look like (again, something no mother should have to!). Kennedy had now gone through three surgeries and yet another failed ear. Kennedy was in this for the long haul. This was her ear. This was her body. And ultimately, this was her decision. Now don't get me wrong, as a social researcher I know ways to bias one's answer. And perhaps I was a little guilty of this. But I needed her to make the final decision. And through her tears, she said "I'm done."
Now if you think this was a heartbreaking scene, which it was and I felt REALLY sorry for the young resident who happened upon it, it was about to get worse. Dr. Marcus said that if we decided surgery removal, it needed to be on Wednesday. Let me tell you about Wednesday...
The Carolina Hurricanes had conducted a competition at Leesville Elementary the previous school year. The kids were challenged to read as many pages as they could for six weeks and the top readers would get an awesome prize. Kennedy read several thousand pages and then we kind of forgot about it. But in the couple of days that she was back at school, she learned that she was one of the top seven readers in the school. With a prize of being in a PSA about reading with Hurricane Brandon Sutter. And that PSA video was being filmed on...you guessed it, that Wednesday.
Suddenly, surgery wasn't so bad. But missing the Hurricane video chance? End. Of. The. World. If I thought my heart broke before, this time it shattered. I mean, I expected her to be upset. But she was deflated. She was devastated. She was crushed into a million pieces. It was a hard afternoon and I'm glad it ended up just being the two of us.
So, remember when I said my dad had left that morning since Kennedy was coming home? I'm sitting at home that evening and my mom tries to call him with no luck. She tried a little later. And about 10pm, someone knocks on the door and once again, we were "surprised" by my dad with his suitcase. He drove 7 hours home, learned of the surgery, cancelled all his golf games, and drove 7 hours back. This is why I love him.
And so Wednesday comes. Dr. Marcus did not have an OR that day so he was at the mercy of other doctors so surgery time was hit and miss. My parents missed kissing Kennedy good luck by 5 minutes. I dressed up in my bunny suit (trust me, you don't want to know) and I headed into the OR with Kennedy. I stayed with her till she was asleep and kissed her baby eye, about the same time that she should have been filming a video with Brandon Sutter.
Dr. Marcus asked me to step out in the hall with him. He asked if I was okay. He handed me paperwork about the prosthetic team who make numerous body parts from silicone, including ears. He told me that he asked one of these team members to stop by our room that night, saying he couldn't let us leave without hope. And he hugged me. And I don't mean just an awkward little pat type hug. He hugged me. He made sure I was okay. Then he went to operate on my baby. And this is why I love him.
Surgery went well, he was able to get all of the MRSA. Good news because that meant only the normal post-op antibiotics instead of the heavy-duty stuff. Do you know what 10 days of intense, extreme, heavy-dose antibiotics can do to one's GI tract? Well, it isn't pretty. Four months later, we're still dealing with it on a daily basis.
Back in the room that evening, the prosthetic artist (I know this isn't his technical title but close enough) stopped by after a long day at his job. He brought pamphlets, pictures, example ears, information, HOPE. Kennedy wouldn't look at anything or touch anything but you could tell she was listening to every word he said. And this guy was awesome, unlike the other prosthetic artist that we met at that other hospital. Just his willingness to come talk to us, his trying to pull Kennedy into the conversation...it meant a lot to me.
Thursday came and with it the news we had been waiting 10 days to here: "You're going home." And so we went. And on the way home, I heard from the backseat, "Ya know what, Mom? Those ears that guy brought last night were pretty cool, weren't they?" And my baby girl soldiers on...
Again, I know I can't possibly get my emotions to come across like I want. And I'm sure as I reread this, I will realize details I forgot. The bottom line is, those were ten days spent in hell. But we survived. And we left with hope. And Dr. Marcus' promise that he will never give up on Kennedy.
(NEXT BLOG: A Sister's Perspective)
We spent the holiday Monday trying to keep Kennedy distracted. Distracted by the bad news of her ear not cooperating, and from the anticipation of going home. With my parents now there as reinforcements, Ryan's mom headed home...she had been on hospital duty since Wednesday (which I forgot to mention in Part I, was Ryan's birthday...we celebrated with a pizza and cake party in the room!). Andrea, Brad and Megan all came and spent several hours with Kennedy. We claimed a corner of the cafeteria and spread out with games, crafts, and of course ice cream. The amount of ice cream we ate from the cafeteria was excessive by this point!
Things were no better with Kennedy's ear on Monday evening and we were literally just playing a waiting game to go home at that point. We played a lot of cards that evening, again trying to distract and waste the hours away. We started sending things home with my parents that night...you can't imagine how much we accumulate doing a week plus hospital stay. Things from home, things friends leave to help occupy time, things for Ryan and I, homework and school books, gifts and balloons from visitors and other. The piles never end.
Then. Came. Tuesday. My dad left bright and early to head back to Ohio. Mom was staying to help with Kennedy and to help get our lives back to normal. My mom stayed home instead of coming to the hospital since we were coming home. And since mom didn't need a ride over, and since I would be coming home soon (our usual rule is that if we stay all night, we get to go home and rest or shower or whatever in the morning while the other steps in), Ryan went on to work.
At the 5am wake-up, Dr. Marcus' team thought she would be going home. Yay! But then Dr. Marcus came. And after looking at her ear, and realizing that the oral antibiotics were doing absolutely nothing (another battle with the ID docs!), he strongly suggested that we have one more surgery....to remove the ear, to remove the MRSA infection. This was hard to hear. We knew the ear wasn't what we wanted. But it was something. We had something to show for all the pain and suffering that we had been through. And when I say we, I mostly mean Kennedy.
Even harder for me as a parent was what I did next. And that was to explain to Kennedy and tell her that it had to be her decision. No parent wants to put this type of pressure on their nine year old child, let me tell ya. It broke my heart to do it. But I couldn't make it for her. I had made the decision of what her face should look like (again, something no mother should have to!). Kennedy had now gone through three surgeries and yet another failed ear. Kennedy was in this for the long haul. This was her ear. This was her body. And ultimately, this was her decision. Now don't get me wrong, as a social researcher I know ways to bias one's answer. And perhaps I was a little guilty of this. But I needed her to make the final decision. And through her tears, she said "I'm done."
Now if you think this was a heartbreaking scene, which it was and I felt REALLY sorry for the young resident who happened upon it, it was about to get worse. Dr. Marcus said that if we decided surgery removal, it needed to be on Wednesday. Let me tell you about Wednesday...
The Carolina Hurricanes had conducted a competition at Leesville Elementary the previous school year. The kids were challenged to read as many pages as they could for six weeks and the top readers would get an awesome prize. Kennedy read several thousand pages and then we kind of forgot about it. But in the couple of days that she was back at school, she learned that she was one of the top seven readers in the school. With a prize of being in a PSA about reading with Hurricane Brandon Sutter. And that PSA video was being filmed on...you guessed it, that Wednesday.
Suddenly, surgery wasn't so bad. But missing the Hurricane video chance? End. Of. The. World. If I thought my heart broke before, this time it shattered. I mean, I expected her to be upset. But she was deflated. She was devastated. She was crushed into a million pieces. It was a hard afternoon and I'm glad it ended up just being the two of us.
So, remember when I said my dad had left that morning since Kennedy was coming home? I'm sitting at home that evening and my mom tries to call him with no luck. She tried a little later. And about 10pm, someone knocks on the door and once again, we were "surprised" by my dad with his suitcase. He drove 7 hours home, learned of the surgery, cancelled all his golf games, and drove 7 hours back. This is why I love him.
And so Wednesday comes. Dr. Marcus did not have an OR that day so he was at the mercy of other doctors so surgery time was hit and miss. My parents missed kissing Kennedy good luck by 5 minutes. I dressed up in my bunny suit (trust me, you don't want to know) and I headed into the OR with Kennedy. I stayed with her till she was asleep and kissed her baby eye, about the same time that she should have been filming a video with Brandon Sutter.
Dr. Marcus asked me to step out in the hall with him. He asked if I was okay. He handed me paperwork about the prosthetic team who make numerous body parts from silicone, including ears. He told me that he asked one of these team members to stop by our room that night, saying he couldn't let us leave without hope. And he hugged me. And I don't mean just an awkward little pat type hug. He hugged me. He made sure I was okay. Then he went to operate on my baby. And this is why I love him.
Surgery went well, he was able to get all of the MRSA. Good news because that meant only the normal post-op antibiotics instead of the heavy-duty stuff. Do you know what 10 days of intense, extreme, heavy-dose antibiotics can do to one's GI tract? Well, it isn't pretty. Four months later, we're still dealing with it on a daily basis.
Back in the room that evening, the prosthetic artist (I know this isn't his technical title but close enough) stopped by after a long day at his job. He brought pamphlets, pictures, example ears, information, HOPE. Kennedy wouldn't look at anything or touch anything but you could tell she was listening to every word he said. And this guy was awesome, unlike the other prosthetic artist that we met at that other hospital. Just his willingness to come talk to us, his trying to pull Kennedy into the conversation...it meant a lot to me.
Thursday came and with it the news we had been waiting 10 days to here: "You're going home." And so we went. And on the way home, I heard from the backseat, "Ya know what, Mom? Those ears that guy brought last night were pretty cool, weren't they?" And my baby girl soldiers on...
Again, I know I can't possibly get my emotions to come across like I want. And I'm sure as I reread this, I will realize details I forgot. The bottom line is, those were ten days spent in hell. But we survived. And we left with hope. And Dr. Marcus' promise that he will never give up on Kennedy.
(NEXT BLOG: A Sister's Perspective)
Friday, January 13, 2012
Kennedy's Story as a Duke Family Ambassador
Dear Friends - Our family was chosen to be a family ambassador for the 2012 Duke Children’s Hospital Radiothon! We feel honored to be chosen and are doing all we can to get the word out and keep the donations rolling in! Our goal is to raise $5000 in honor of Team Kennedy. Check out our page and video and consider helping us as we give back to Duke! All donations go directly to help the children of Duke and donations can be made safely through the webpage (we can also accept cash/check donations). Every little bit helps so please, please considering giving to Duke Children’s Hospital and Health Center in honor of our strong, brave girl – Kennedy Grace Goodwin. Our inspiration, our hero.
To donate, or to read and learn more about Kennedy and what Duke means to us, please click here: http://www.helpmakemiracles.org/team/TeamKennedy
And please feel free to pass this onto others – the more we can spread the word, the more we can raise!!
We love you all!
Amy and Kennedy
Tuesday, January 10, 2012
A Ten Day Ride on the Roller Coaster of Hell - Part I
One thing that has been so hard about writing this blog is that it is impossible to relay the true emotions we felt during this time. I know no one will ever know but I wish I could do a better job of making those feelings real. You'll also notice that I split this into two parts...I didn't want it to be so long that people gave up on reading it as I think this is a compelling part of Kennedy's journey.
For four whole days, we relaxed. Pink remained our favorite color throughout the weekend. We did twice a day bandage changes and everything appeared to be okay. Kennedy was back at school on Day 2 and settling in. We moved on with normal life and stopped worrying every minute about skin grafts. Lucky 13 seemed to work in our favor.
Then I came home from work on Monday, August 29th. I noticed blood on the shoulder of Kennedy's shirt and there was icky stuff dripping out from under the bandage. And my heart literally sank. I immediately did a bandage change and it was clear as glass that there was an infection spot. I called and left a message for Dr. Marcus, knowing we wouldn't hear back until the following morning. So we carried on as normal...and waited.
Dr. Marcus' nurse called the next morning and said that he wanted to see us ASAP. He was in surgery that day but to be there at 1:30 and he would stop by when he could. Ryan met us at the hospital...and we waited. I mentioned to someone at work that I was dreading this visit not because I wasn't ready for more bad news (I clearly knew the news wasn't going to be good), but because I had an idea that he wasn't going to let us leave and I knew that was going to hit Kennedy hard.
And sure enough, Dr. Marcus took a long look at the ear and turned to us and said, "I can't let you leave." And sure enough, the tears flowed. And flowed. By this point, Kennedy had already had two recent surgeries and spent four nights in the hospital due to this ear. She was frustrated, she was upset, and she was just plain pissed off. I tried to get her to punch Ryan, ensuring her it would feel better, but she refused. :)
So the plan was to walk over to the hospital and start on IV antibiotics. Dr. Marcus took a biopsy of the infected area and placed a call to the infectious disease folks to talk about a course of treatment. We sent Ryan home with a list of must-haves, called grandparents to let them know, and called Katie to bring us food as we had not yet eaten. The roller coaster had left the turnstile.
One of our first major hills to climb was the placement of the IV. Mind you, Kennedy has had lots of IVs but almost all have been placed once she is asleep in the OR. Add to that the fact that my child does not have easy veins to puncture and you get a majorly stressful life event. But after more than 30 minutes and only a few tears, we made it and she was ready. And that's when we learned of the second major hill we were facing: the face-off between Dr. Marcus and the infectious disease (ID) doctors. Little did we know that this was going to be a fight that lasted the whole hospital visit and beyond.
We were visited that first day by a group of about 7 ID docs and residents. They asked us numerous questions, some of them not pleasant. They left making me feel as if I caused this by allowing Kennedy to have contact with our dog or because I let her leave the house (no one told me she was supposed to be in a bubble???). By the time they finally started the IV drugs that evening, there was still no consensus as to what they were treating or how they were going to treat it. They started her on a generically-used IV antibiotic while they continued to try and sort things out. It took lots of back and forth until Friday, three days after admission, when it was determined that Kennedy's infection was a case of drug-resistant MRSA. A superbug. A threat to her ear and to her life.
We were officially quarantined - anyone entering had to wear gowns and masks and Kennedy wasn't supposed to leave the room. Lucky for us, Dr. Marcus and his team were determined to win one battle against the ID folks. They insisted that for her own well-being, she had to leave the room a couple of times everyday. (although this meant that Kennedy now had to wear said gown when she left the room, which she was NOT happy about). No exceptions. This is something that truly hits home for me...in all of this, her doctor was worried about Kennedy as a person. He was looking beyond what all of this meant for her ear, and making sure we were doing what we could to keep her spirits alive.
By this time though, Kennedy was clearly depressed. In all that we've gone through, in all the fights that we have fought, this was the first time that I've ever seen her depressed. She stopped talking . She would sit and stare at the wall for hours. She would refuse the things she loved. She didn't want to leave the room. She crawled inside herself and refused to leave. And I took the brunt of this. When she cried, it was me who she hated through her tears. When she yelled, it was me who was receiving the harsh words. When she was silent the longest, it was me who was on the receiving end of that. If we needed to figure something out, it was no longer me who could get it out of her. I had officially become her punching bag. And I will be 100% honest and tell you that it hurt. It hurt a lot. Deep down I know that I was chosen because I'm the most important person in her life, and that she knew it was safe to take it all out on me because I would love her no matter what. But it still hurt like hell. It also helped my guilt trip along, the guilt trip that I triggered all of this with the decision to proceed with ear reconstruction.
And so I took it. Tuesday, Wednesday, Thursday, Friday. In those four days, she maybe said a total of 100 words to me. And the words she did speak to me were "I need to go to the bathroom." or "Leave me alone." or "I don't care." I'll admit that I'm good at giving the silent treatment. But I suck at being on the receiving end.
Friday night was my night to sleep at home. And I woke up Saturday morning knowing I couldn't face another silent day. So I texted Ryan to give his phone to Kennedy. And I sent her a message asking that if she was going to continuing to be silent with me, to let me know because I love her too much and it hurts too much and I couldn't spend yet another day like that. My reply back was "Please come." And so a truce was called.
Each day started with a 6am visit by Dr. Marcus' team and luckily, Kennedy learned how to sleep through these pokes and prods. I, in my ever-comfy recliner, was not so lucky. By the end of the day, we had seen Dr. Marcus and/or his team at least twice and the ID docs at least twice. And with every visit came something different. Some docs would comment that her ear looks better while others would be in the next visit and comment that it looked no different. After a couple of days this, I quit allowing this game. I told the doctors that it wasn't helping me or Kennedy to hear all the contradicting views. No one but Dr. Marcus was allowed to make official comments on how things were looking. I love his team, and I respect that the ID docs know MRSA, but Dr. Marcus and Dr. Marcus alone knew Kennedy's ear.
One of the hardest things at this point for me is that the swelling was starting to go down and despite the infection spot, it was finally proving to be the ear we were hoping for it. It was cute, it resembled her other ear a lot, and it was perfect. Minus the damn MRSA. By Friday, the framework had started retreating back towards her head, which is not we wanted. That was a hard pill to swallow. So much hope by seeing this cute ear, then watching it disappear in front of our eyes.
By Saturday, we were thanful that we had no Labor Day plans. What a crappy way to spend the holiday weekend. The new ear cartilage had retreated further. Her blood levels required a stop in one of the major antibiotics. The intense drugs had wreaked havoc on her IV site so another IV was required. We had seen 5 different head ID doctors and they each had their own treatment plan and no one could agree. The drugs were keeping the MRSA from entering Kennedy's blood stream but the drugs were not getting to the actual MRSA infection to kill it (due to ear not yet having blood supply). There was discussion of putting a picc line in and sending Kennedy home on IV antibiotics for the unforeseeable future, not an ideal solution. The good news for the day was that Kennedy's best friend came to visit for several hours and Kennedy's spirits were restored. We spent a lot of time playing with Andrea outside that afternoon and I fully give credit to friendship for Kennedy getting back into the fight. Thank God for Andrea (and her mom)!
By Sunday, Dr. Marcus had won the war. Because we had lost so much ground on the ear, and we no longer had quality of the ear, we were going for quality of life. Which meant no picc line and IV antibiotics at home. As of Sunday afternoon, all IVs had been suspended and we had moved to a pretty strong oral antibiotic. At that point, our hope was that the infection continued to clear up, that the black spot had something behind it so when it eventually fell off we didn't have to have surgery to protect the opening (a pointless surgery at that point), and that the cartilage that remained didn't disappear or retreat any further so that she has something that resembles an ear. A quote from me on the Team Kennedy page on this particular Sunday: "I can't put into words how we feel, there just aren't words. I can't tell you what this has done to our resolve, our strength, our spirits, there just aren't words. But Kennedy is stronger than any other person I know and she will soldier on, which means we all will follow behind her."
This was the point where I broke down in the hallway of Duke Children's. I literally just lost it. It isn't that I had not already cried about things. But this was just the end, or so we thought. And after making this journey decision for Kennedy, and knowing that it went so wrong, I just needed to lose it. Eventually, someone summonsed the hospital chaplain, who was determined to make me talk. She obviously had different views than me (I don't think she felt my prayers to Kennedy's guardian angels were enough or directed to the right higher being(s) and she wasn't happy that I wasn't buying into her thoughts) and we were getting nowhere -- I was getting no closer to a discussion about God with her and she was getting no closer to leaving me alone. At the same time, a random lady who I could barely understand decided to stop and pray over me. Geez, those Spanish Catholics have long prayers! Honestly, it was stepping back and looking at this scene as a passerby, knowing that Katie was expected to show up at any time and would walk into said scene, that made me start laughing. I know the Chaplain thought I was losing it at that point, but I was actually recovering. So I picked myself off of the floor and returned to Kennedy's room. Yes, we lost the battle but we weren't going to lose the war.
We ended the weekend hoping for the best case scenario: Kennedy would be home Tuesday and back at school Wednesday. No matter what, she wouldn't have the ear she should be leaving with :(.
(NEXT BLOG: 10 Day Ride, Part 2)
For four whole days, we relaxed. Pink remained our favorite color throughout the weekend. We did twice a day bandage changes and everything appeared to be okay. Kennedy was back at school on Day 2 and settling in. We moved on with normal life and stopped worrying every minute about skin grafts. Lucky 13 seemed to work in our favor.
Then I came home from work on Monday, August 29th. I noticed blood on the shoulder of Kennedy's shirt and there was icky stuff dripping out from under the bandage. And my heart literally sank. I immediately did a bandage change and it was clear as glass that there was an infection spot. I called and left a message for Dr. Marcus, knowing we wouldn't hear back until the following morning. So we carried on as normal...and waited.
Dr. Marcus' nurse called the next morning and said that he wanted to see us ASAP. He was in surgery that day but to be there at 1:30 and he would stop by when he could. Ryan met us at the hospital...and we waited. I mentioned to someone at work that I was dreading this visit not because I wasn't ready for more bad news (I clearly knew the news wasn't going to be good), but because I had an idea that he wasn't going to let us leave and I knew that was going to hit Kennedy hard.
And sure enough, Dr. Marcus took a long look at the ear and turned to us and said, "I can't let you leave." And sure enough, the tears flowed. And flowed. By this point, Kennedy had already had two recent surgeries and spent four nights in the hospital due to this ear. She was frustrated, she was upset, and she was just plain pissed off. I tried to get her to punch Ryan, ensuring her it would feel better, but she refused. :)
So the plan was to walk over to the hospital and start on IV antibiotics. Dr. Marcus took a biopsy of the infected area and placed a call to the infectious disease folks to talk about a course of treatment. We sent Ryan home with a list of must-haves, called grandparents to let them know, and called Katie to bring us food as we had not yet eaten. The roller coaster had left the turnstile.
One of our first major hills to climb was the placement of the IV. Mind you, Kennedy has had lots of IVs but almost all have been placed once she is asleep in the OR. Add to that the fact that my child does not have easy veins to puncture and you get a majorly stressful life event. But after more than 30 minutes and only a few tears, we made it and she was ready. And that's when we learned of the second major hill we were facing: the face-off between Dr. Marcus and the infectious disease (ID) doctors. Little did we know that this was going to be a fight that lasted the whole hospital visit and beyond.
We were visited that first day by a group of about 7 ID docs and residents. They asked us numerous questions, some of them not pleasant. They left making me feel as if I caused this by allowing Kennedy to have contact with our dog or because I let her leave the house (no one told me she was supposed to be in a bubble???). By the time they finally started the IV drugs that evening, there was still no consensus as to what they were treating or how they were going to treat it. They started her on a generically-used IV antibiotic while they continued to try and sort things out. It took lots of back and forth until Friday, three days after admission, when it was determined that Kennedy's infection was a case of drug-resistant MRSA. A superbug. A threat to her ear and to her life.
We were officially quarantined - anyone entering had to wear gowns and masks and Kennedy wasn't supposed to leave the room. Lucky for us, Dr. Marcus and his team were determined to win one battle against the ID folks. They insisted that for her own well-being, she had to leave the room a couple of times everyday. (although this meant that Kennedy now had to wear said gown when she left the room, which she was NOT happy about). No exceptions. This is something that truly hits home for me...in all of this, her doctor was worried about Kennedy as a person. He was looking beyond what all of this meant for her ear, and making sure we were doing what we could to keep her spirits alive.
By this time though, Kennedy was clearly depressed. In all that we've gone through, in all the fights that we have fought, this was the first time that I've ever seen her depressed. She stopped talking . She would sit and stare at the wall for hours. She would refuse the things she loved. She didn't want to leave the room. She crawled inside herself and refused to leave. And I took the brunt of this. When she cried, it was me who she hated through her tears. When she yelled, it was me who was receiving the harsh words. When she was silent the longest, it was me who was on the receiving end of that. If we needed to figure something out, it was no longer me who could get it out of her. I had officially become her punching bag. And I will be 100% honest and tell you that it hurt. It hurt a lot. Deep down I know that I was chosen because I'm the most important person in her life, and that she knew it was safe to take it all out on me because I would love her no matter what. But it still hurt like hell. It also helped my guilt trip along, the guilt trip that I triggered all of this with the decision to proceed with ear reconstruction.
And so I took it. Tuesday, Wednesday, Thursday, Friday. In those four days, she maybe said a total of 100 words to me. And the words she did speak to me were "I need to go to the bathroom." or "Leave me alone." or "I don't care." I'll admit that I'm good at giving the silent treatment. But I suck at being on the receiving end.
Friday night was my night to sleep at home. And I woke up Saturday morning knowing I couldn't face another silent day. So I texted Ryan to give his phone to Kennedy. And I sent her a message asking that if she was going to continuing to be silent with me, to let me know because I love her too much and it hurts too much and I couldn't spend yet another day like that. My reply back was "Please come." And so a truce was called.
Each day started with a 6am visit by Dr. Marcus' team and luckily, Kennedy learned how to sleep through these pokes and prods. I, in my ever-comfy recliner, was not so lucky. By the end of the day, we had seen Dr. Marcus and/or his team at least twice and the ID docs at least twice. And with every visit came something different. Some docs would comment that her ear looks better while others would be in the next visit and comment that it looked no different. After a couple of days this, I quit allowing this game. I told the doctors that it wasn't helping me or Kennedy to hear all the contradicting views. No one but Dr. Marcus was allowed to make official comments on how things were looking. I love his team, and I respect that the ID docs know MRSA, but Dr. Marcus and Dr. Marcus alone knew Kennedy's ear.
One of the hardest things at this point for me is that the swelling was starting to go down and despite the infection spot, it was finally proving to be the ear we were hoping for it. It was cute, it resembled her other ear a lot, and it was perfect. Minus the damn MRSA. By Friday, the framework had started retreating back towards her head, which is not we wanted. That was a hard pill to swallow. So much hope by seeing this cute ear, then watching it disappear in front of our eyes.
By Saturday, we were thanful that we had no Labor Day plans. What a crappy way to spend the holiday weekend. The new ear cartilage had retreated further. Her blood levels required a stop in one of the major antibiotics. The intense drugs had wreaked havoc on her IV site so another IV was required. We had seen 5 different head ID doctors and they each had their own treatment plan and no one could agree. The drugs were keeping the MRSA from entering Kennedy's blood stream but the drugs were not getting to the actual MRSA infection to kill it (due to ear not yet having blood supply). There was discussion of putting a picc line in and sending Kennedy home on IV antibiotics for the unforeseeable future, not an ideal solution. The good news for the day was that Kennedy's best friend came to visit for several hours and Kennedy's spirits were restored. We spent a lot of time playing with Andrea outside that afternoon and I fully give credit to friendship for Kennedy getting back into the fight. Thank God for Andrea (and her mom)!
By Sunday, Dr. Marcus had won the war. Because we had lost so much ground on the ear, and we no longer had quality of the ear, we were going for quality of life. Which meant no picc line and IV antibiotics at home. As of Sunday afternoon, all IVs had been suspended and we had moved to a pretty strong oral antibiotic. At that point, our hope was that the infection continued to clear up, that the black spot had something behind it so when it eventually fell off we didn't have to have surgery to protect the opening (a pointless surgery at that point), and that the cartilage that remained didn't disappear or retreat any further so that she has something that resembles an ear. A quote from me on the Team Kennedy page on this particular Sunday: "I can't put into words how we feel, there just aren't words. I can't tell you what this has done to our resolve, our strength, our spirits, there just aren't words. But Kennedy is stronger than any other person I know and she will soldier on, which means we all will follow behind her."
This was the point where I broke down in the hallway of Duke Children's. I literally just lost it. It isn't that I had not already cried about things. But this was just the end, or so we thought. And after making this journey decision for Kennedy, and knowing that it went so wrong, I just needed to lose it. Eventually, someone summonsed the hospital chaplain, who was determined to make me talk. She obviously had different views than me (I don't think she felt my prayers to Kennedy's guardian angels were enough or directed to the right higher being(s) and she wasn't happy that I wasn't buying into her thoughts) and we were getting nowhere -- I was getting no closer to a discussion about God with her and she was getting no closer to leaving me alone. At the same time, a random lady who I could barely understand decided to stop and pray over me. Geez, those Spanish Catholics have long prayers! Honestly, it was stepping back and looking at this scene as a passerby, knowing that Katie was expected to show up at any time and would walk into said scene, that made me start laughing. I know the Chaplain thought I was losing it at that point, but I was actually recovering. So I picked myself off of the floor and returned to Kennedy's room. Yes, we lost the battle but we weren't going to lose the war.
We ended the weekend hoping for the best case scenario: Kennedy would be home Tuesday and back at school Wednesday. No matter what, she wouldn't have the ear she should be leaving with :(.
(NEXT BLOG: 10 Day Ride, Part 2)
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