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.
Tuesday, May 8, 2012
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
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