Tides do what tides do, they turn. And as I was sitting on the beach this past weekend watching the tide do what it does, it made me realize that our own tides are turning.
For so long, I have been the decision-maker on this journey. I do the research, I make the appointments, I go over and over it in my head (then go over it one more time), I schedule the surgeries, yada, yada, yada. And those close to me know how hard some decisions have been for me. There have been sleepless nights, tears, cursing, dread, and just hate for the fact that I even have to make such decisions. But nonetheless, they had to be made and no one else was making them. The job of a mother, I know.
But little by little, that job is slowly being removed from my hands. With the first ear reconstruction, Kennedy started voicing her thoughts and opinions. She wanted to do it but she didn't technically make the decision. By the time the second ear reconstruction rolled around, she was a little more in tune with the decision making process. We talked about it, I gave her the pros and cons (although let's face it, no one saw the ending coming), I gave her my thoughts and opinion, and she said yeah, let's do it. So after that disaster, I stepped back. I had to for my own sake...the disappointment ended up on my shoulders whether it was my fault/decision or not. So Kennedy made the decision of a prosthetic ear on her own. And I was proud of her for making that decision, and would have been even if she had decided not to go that route. BUT, we were already so far down that road. She had been trying to get an ear for so long that it wasn't that difficult of a decision to make. Sure, she needed time to heal from the physical and emotional toll that two failed ear reconstructions took on her body and soul. Who wouldn't? But when she was able to see clearly again, she knew she was too close to throw it all away. So prosthetic ear we did.
So when spring rolled around and she asked for an appointment with her plastic surgeon, imagine my shock. Yes, you read that right...SHE ASKED. It wasn't something where I said, "Do you want to look more into this?" No, it was more like out of the blue clear sky, "Mom, can I go see Dr. Marcus?" And so we went. And at her request, he told her the process for removing the large mark on her cheek (most likely a type of mole but no one really knows other than a biopsy when it appeared years ago proved it wasn't cancer). He also told her all about SMILE surgery, which we've talked about before but never in detail and never at Kennedy's request. He sat with us for quite awhile and told her all the details. He had also written it all up and handed it to her as we left, knowing her and the fact that she would contemplate more once we left his office. Katie and I discussed SMILE surgery on the way home that day and we both thought it sounded amazing. There are two ways to accomplish it but essentially, it is taking a nerve and a muscle from the leg and implanting in the cheek. With some therapy and just everyday use, the nerve and muscle learn how to function relative to the opposite "working" side. It helps with facial paralysis, gives a more symmetrical smile, and perhaps can assist with speech issues. (please note that this is the shortest, most generic description of this surgery!) But then we never mentioned it again.
On our way home from helping with a project for Duke Children's last week, Kennedy let me know that she wanted me to schedule surgery - for removal of the mole and for the first stage of the two-stage SMILE approach. And there it was, the tides turning. This has been her decision from the beginning -- she asked for the appointment, she obviously gave it tons of thought, she made the decision. On her own. Without me. Without any advice from me other than knowing that in general, I find the surgery amazing.
Let me remind you that she is 12. And although someone made the comment on the Team Kennedy page a couple of weeks ago that allowing such a young, "not mature" child make such a decision was an awful parenting decision, I couldn't be more proud. When it comes down to it, this is HER life. This is HER face. This is HER self-esteem. This is HER decision. To some 12 may seem young to make such life-altering decisions. But Kennedy has been through more in her 12 years than most people have been through in their lifetime. She is no stranger to surgery and disappointment. And life-threatening infections. But this is what she wants. This is the path that she wants to take. This is her taking ownership of her syndrome. This is the tides turning.
And the thing is, she know I'm always there to help with these decisions if she wants my help. She knows some decisions - like whether she will need a spinal fusion in a few years - may be out of her hands. She knows that no matter what she decides, I will be there when she is put to sleep and I'll be there when she wakes. She knows I'll stand behind her 100%.
The tides are turning, but I know how to swim. I also know how to float. And boogie-board. And stay on shore. Whatever she needs me to do as she controls her own future, and she takes ownership (and kicks ass) of this thing we call Goldenhar.
Monday, July 14, 2014
Wednesday, April 30, 2014
I wouldn't trade it for anything. Or would I?
Since Kennedy was born, I gravitate towards special needs articles and blogs, whether they relate to our journey or not. Every special situation lends the opportunity to learn something new, to expand our thoughts, to grow. They are all good reminders that life can change in a heartbeat, that we should live in the moment, and that things could always be worse.
Lately, a common theme I've read in many articles and blogs has made me start pondering. I've seen many (not all!) writers declare they wouldn't change anything about their child or their situation. That it is what makes the child special. It is who the child is. They wouldn't be [FILL NAME] if they didn't have [FILL SPECIAL NEED]. And I get this. I really do. Kennedy has only been made stronger by all she has gone through. Her compassion for others' suffering has been intensified by all she has gone through. I could go on with the positives that we can attribute to this journey.
But if I could, would I trade it all in? Would I make Kennedy syndrome-free? Give her two (real) ears? Restored hearing? Sight in both eyes? Two kidneys? A straight spine and a rib cage that grows? Two shoulder blades that match and work the same way? Neck bones and muscles that work properly? Lung capacity of a normal 12 year old? Working facial muscles and a normal palate to assist with proper speech? A GI tract that works correctly? YOU BETCHA.
Am I bad mother for not embracing everything Kennedy is with a whole heart? For not accepting it all as a blessing? Don't get me wrong, I love my sweet Kennedy exactly how she is. She is perfect to me. And this journey has been amazing in many ways. But I see her face her medical struggles every single day. I see her:
- miss things that are being said because someone was on her right side and her left-sided hearing aid didn't pick it up or they were too far away (and then have people think she is rude and ignoring them!);
- get frustrated when someone, including the dog!, doesn't understand what she is trying to say because of her speech issues;
- get upset because she can't play most team sports like her friends, in an effort to keep her one kidney safe;
- fight pain on a regular basis from her neck/back/spine issues;
- struggle with dressing in a way that others won't think she has a "tummy" (most people don't realize this is actually her organs, pushed out due to her spine/rib cage issues);
- run out of breath faster than her friends because of her limited lung capacity;
- practice talking and smiling and making other faces in the mirror in an effort to try to gain any kind of control over the right side of her face and mouth;
- pretend she doesn't see people stare at her or point at her or whisper about her.
She faces each medical/physical challenge with grace and determination. She doesn't let it get her down or define who she is. But as her mother, I know it has to be exhausting at times. Heaven knows that it breaks my heart at times. And what worries me is that we don't know what is to come, what's around the next corner. If anything, we'll get through it. But I know it all takes a toll on that sweet girl's soul.
The bottom line is I have no idea who Kennedy would be if she weren't born with Goldenhar Syndrome and all that comes with it. Part of this journey has truly shaped who she is. But if I could make her syndrome-free, I would do it in a heartbeat. There are enough challenges in today's world for every kid. I only wish I could take some of these medical challenges away...
Lately, a common theme I've read in many articles and blogs has made me start pondering. I've seen many (not all!) writers declare they wouldn't change anything about their child or their situation. That it is what makes the child special. It is who the child is. They wouldn't be [FILL NAME] if they didn't have [FILL SPECIAL NEED]. And I get this. I really do. Kennedy has only been made stronger by all she has gone through. Her compassion for others' suffering has been intensified by all she has gone through. I could go on with the positives that we can attribute to this journey.
But if I could, would I trade it all in? Would I make Kennedy syndrome-free? Give her two (real) ears? Restored hearing? Sight in both eyes? Two kidneys? A straight spine and a rib cage that grows? Two shoulder blades that match and work the same way? Neck bones and muscles that work properly? Lung capacity of a normal 12 year old? Working facial muscles and a normal palate to assist with proper speech? A GI tract that works correctly? YOU BETCHA.
Am I bad mother for not embracing everything Kennedy is with a whole heart? For not accepting it all as a blessing? Don't get me wrong, I love my sweet Kennedy exactly how she is. She is perfect to me. And this journey has been amazing in many ways. But I see her face her medical struggles every single day. I see her:
- miss things that are being said because someone was on her right side and her left-sided hearing aid didn't pick it up or they were too far away (and then have people think she is rude and ignoring them!);
- get frustrated when someone, including the dog!, doesn't understand what she is trying to say because of her speech issues;
- get upset because she can't play most team sports like her friends, in an effort to keep her one kidney safe;
- fight pain on a regular basis from her neck/back/spine issues;
- struggle with dressing in a way that others won't think she has a "tummy" (most people don't realize this is actually her organs, pushed out due to her spine/rib cage issues);
- run out of breath faster than her friends because of her limited lung capacity;
- practice talking and smiling and making other faces in the mirror in an effort to try to gain any kind of control over the right side of her face and mouth;
- pretend she doesn't see people stare at her or point at her or whisper about her.
She faces each medical/physical challenge with grace and determination. She doesn't let it get her down or define who she is. But as her mother, I know it has to be exhausting at times. Heaven knows that it breaks my heart at times. And what worries me is that we don't know what is to come, what's around the next corner. If anything, we'll get through it. But I know it all takes a toll on that sweet girl's soul.
The bottom line is I have no idea who Kennedy would be if she weren't born with Goldenhar Syndrome and all that comes with it. Part of this journey has truly shaped who she is. But if I could make her syndrome-free, I would do it in a heartbeat. There are enough challenges in today's world for every kid. I only wish I could take some of these medical challenges away...
Monday, February 17, 2014
A Walk Down Memory Lane
I know you've all seen Kennedy's big news about being chosen to serve as North Carolina's 2014 Champion for the Children's Miracle Network Hospitals. She will be officially announced sometime in March and she is really excited for the upcoming year! As we embark on this amazing opportunity, and as we approach the dozen year mark of Kennedy's journey, I've been thinking back to all that she has gone through in her short lifetime. Let's take a walk down memory lane, a long walk over the last dozen years...
- Kennedy was born in May 2002. Within seconds we knew that things weren't right. Within hours we were given the diagnosis of Goldenhar Syndrome, had appointments set up at various clinics, and were brought up to speed on ALL the possible issues that she could face in her immediate and long-term future. By that night, a blue Kennedy was being rushed to the NICU where she would spend her first week of life, learning how to eat without choking. At two weeks old, Kennedy had her first major cold/sinus infection. We knew then that it was going to be a rough babyhood, filled with many illnesses and bumps in the road.
- At age 2, after two years of regular visits to a development clinic, Kennedy was cleared with no signs of mental/cognitive delays. Although rare with her craniofacial syndrome, the possibility exists. This was a huge weight off of our shoulders, as we knew the physical aspects of the condition were going to be aplenty. Age 2 also brought her first surgery. With her syndrome, Kennedy was born with no teeth enamel and it was wreaking havoc on her little baby teeth. She underwent surgery for multiple root canals, crowns, and other dental work. This was an eye-opener for us. Surgery was difficult. Recovery was difficult. And we ended up back in the ER the next day with a collapsed lung. We knew then that future surgeries were going to be scary.
- Age 3 was a triple whammy. 1. We knew Kennedy was deaf on the right side at birth (she was born with no ear and the inner workings of that ear were not normal). But due to many, many ear infections in her first three years, it was determined that she had lost most hearing in her left ear as well. We were introduced to the world of hearing aids. 2. Kennedy also failed her eye exam. We were sent to a pediatric eye specialist and learned that the eye on her affected side never learned how to focus and she was essentially blind in that eye. We were introduced to the world of eye-patching as well as contact lenses (without an ear, she couldn't wear glasses). 3. The possible skeletal issues that can come with Goldenhar caught up with Kennedy full-force. She was diagnosed with kyphosis and scoliosis of the spine, as well as the beginning stages of Thoracic Insufficiency Syndrome (her left rib cage not growing properly and starting to squeeze her lung and heart).
- Age 5 was another rough year. We reached a life or death point in our journey. Her rib cage was not growing, her lung and heart could not work properly. She was fighting major fatigue and numerous battles with pneumonia. Her heart was getting weaker. We had no choice, it was back to the OR. Kennedy became the first person in the state to receive the VEPTR, a titanium rib, to correct her scoliosis and to stretch her rib cage. Two VEPTRs were placed and she was kept on life support for three days to control pain. When they tried to take her off, she crashed and we watched her die in front of us. That image will remain with me forever. Luckily, we also watched her be brought back to life. Six more days on life support. Then learning how to eat again, talk again, walk again. Not to mention the serious drug withdrawal that she had to go through, like that of a serious heroin addict, due to all the sedation drugs. Then one of the titanium ribs broke off a piece of her spine so it was back to the OR for a fix. When it broke a second time, the second VEPTR was removed in yet another surgery. Almost a month later, we finally returned home to recover enough to start kindergarten. Unfortunately, we had started to battle sleep apnea by this time and by the end of age 5, we were making another life or death decision. Back to the OR for a T&A. A simple surgery? Never. Within 24 hours, Kennedy's lung had collapsed and she was once again on life support. This time for a week, and with a strep pneumonia infection to boot.
- For the next two plus years, Kennedy would battle constant sinus infections, usually on a monthly basis. Now, sinus infections had been an issue since birth due to her very small and closed off sinus cavities, but this was ridiculous. So off we went in search of answers. By age 8, an immunologist/allergist finally figured out that the strep pneumonia infection had killed off every strep-pneumonia antibody in her body...and those antibodies are needed to fight off sinus infections. With one shot, we went from 12-15 sinus infections per year down to about two. What a relief!! In addition to battling the sinus infections, Kennedy also had multiple surgeries over these years to expand the VEPTR, and therefore her rib cage. Her heart and lung finally having room to work properly, she kept on keeping on.
- Age 8 led us to our first elective surgery...YIKES! Talk about a nerve-wracking experience. At this point, we knew that it was extremely hard to intubate her. We knew it was equally hard to extubate her. We knew she was highly allergic to all tape and adhesive used during the surgery process and would have extreme allergic reactions. We knew any kind of surgery could go awry at any time for any reason. But we did it anyway. This time, to implant a titanium screw in her skull in order to receive a BAHA (bone-anchored hearing aid). Instead of hearing microphone-quality sound, she would be able to hear everything crystal clear via the technology of vibration. As much as I hated making the decision to have this surgery, it was by far the best decision I've made to date regarding Kennedy! :). Age 8 also brought us to our first ear reconstruction surgery. Unfortunately, an awful infection set in and ate through all the rib cartilage that was implanted to frame the new ear. That was our rock-bottom point.
- Kennedy spent the rest of age 8 and some of age 9 healing both physically and emotionally from the failed reconstruction. We decided to try, try again. Three surgeries later, the new ear (Take 2) had to be removed in order to win the battle against a severe and dangerous MRSA infection. Ten days in the hospital, we left without an ear, again. As we were reeling from yet more disappointment, we received some good news/bad news on the rib cage front. Her rib cage was FINALLY growing on its own!!! So it was time to remove the VEPTR hardware (picture below)...which meant another surgery. But no matter, we were excited to get that metal out of her body!!!
- Things seemed to be going so well that Kennedy decided that she wanted to try the prosthetic ear route. So age 10 took her back to the OR a couple of times, for the implantation of titanium posts for the new ear.
- And that brings us to age 11, which Kennedy is wrapping up in the next couple of months. We kicked off age 11 celebrating that we wouldn't see an OR this year and praying we wouldn't land a stay in the hospital. Kennedy received her ear last summer and is happy that part of her journey has ended. She loves it, as well as the fact that she can choose when or when not to wear it. And we've managed to stay out of the hospital (knock on wood!!).
I would like to say that we're done, that the journey is over. That the rest of her years can be as easy as 11 has been. Although we've come to the end of some paths, there are still paths of the journey to travel. She has several more surgeries still out there on the table: Smile surgery to fix her facial paralysis (if Kennedy chooses), neck surgery (she has a lot of neck issues due to syndrome), spinal fusion (this is the scariest by far!), jaw surgery (which we're trying to avoid forever if we can), and orthodontic surgery of the lower jaw (just, ouch). And she will always endure hearing issues, sight issues, speech issues, back pain, skin infections around her surgery sites, skeletal issues, not to mention the special precautions she will always have to take to protect her one kidney. And the unsettling thing with craniofacial syndromes is...you never know when something new will manifest. So we keep living, praying that other shoe doesn't drop.
It isn't what Kennedy has gone through that makes her my hero, my champion. But rather her courage, her strength, her grace that she exudes while going through life. Hers hasn't been easy at times, but never -not once - has she complained. She just keeps living, she does what she needs to do, she ignores the stares and whispers that her syndrome often cause, she continues to forge ahead creating her own path through life. She does it with spunk and attitude, with a smile on her face, as a happy child.
She is my inspiration. My hope is that she will inspire others as she makes her way down this new path of her journey. Because truly, she is a Champion.
Saturday, November 2, 2013
Life With Two Ears
It's been awhile since I've visited my trusty blog site. The last time I wrote, we were six days away from Kennedy receiving her new ear. Looking back, I realize I didn't even share pics from the big reveal (I've included one in this post as I know some followers are not on Facebook, where I did share them).
But honestly, I hit the proverbial wall. I was done. Over and out concerning all things medical (or at least the things I could easily ignore). This journey has been exhausting, to say the least. Physically, mentally, emotionally. Sometimes stepping away from it all - from thinking about, from remembering it, from talking about it - is the only way to be able to climb over and conquer that wall.
Getting the ear was a huge deal, as I knew it would be. It took time for Kennedy to get used to it...it felt weird, it made her sweat and itch, and it changed the way she looked. All overwhelming for an eleven-year old. Being a prosthetic, she had the choice of wearing it or not wearing it and for most of the summer, she chose the latter. On top of trying to get used to it, we also had issues with it staying on. She would work up her courage to wear it out, she would open her jaw, and it would pop right off. Not the easiest scenario for a little (overwhelmed) girl to handle. This wasn't to say she didn't like it, or wasn't happy with it. It was just too much for awhile.
In the midst of all of this, Kennedy was facing the daunting challenge of starting middle school. We all remember those days, no? Sigh. But she made the decision that she chose to get the ear for school and by darn, she was going to wear it to school. So off we go to middle school orientation. The first time she's wearing the ear in front of all of her friends. We're in the middle of the auditorium waiting for the program to begin, surrounded by hundreds of other sixth graders and their parents. Kennedy turns around quickly to look for someone...and off pops the ear. She grabs it quickly and stuffs it into my purse, with tears in her eyes. She had steeled herself to attend orientation with two ears. And now, she was having to change her mindset in the middle of it all. I left her there for the student-only portion and I went home and cried. Because at some point, this child deserves a break on this journey for an ear. I mean, is that too much to ask? But she courageously got through the rest of orientation with no problem.
Our awesome anaplastologist worked us in the next day and was able to do some revisions to the ear to stop the popping off. I wasn't sure if this would be enough for Kennedy to try again. I mean honestly, I think I would have given up at this point. But we all know that Kennedy is tougher than I will ever be. And on the first day of school, she asked me to pull her hair up in a ponytail and put her ear on for school. That's my girl! Talk about a looooong day of worrying for this Mama!
But all was well. No one said anything to Kennedy about her new ear and that's just the way she wanted it to go. I came home to an email from the mom of one of her best friend's...she told her mom all about Kennedy's new ear but she knew Kennedy didn't want her to point it out at school. Have I mentioned how awesome Kennedy's friends are? To date, there has been only one incident at school with the ear. Her shoulder hit it in PE class one day and it popped off. The two girls she was playing basketball with didn't say a word, just kept on playing. And Kennedy got through the rest of the day like the strong soul that she is.
I cannot put into words what Kennedy's new ear has done to her confidence level. We all know Kennedy and know she could get through anything, with or without an ear. But it has given her exactly what she needs as she embarks on her new chapter of life. As of right now, she is only sporting two ears for school and that's okay. That's why she wanted it, that's why she chose this route. And I think she is just so comfortable in every other aspect of her life that she doesn't need it to boost her confidence outside of school. But it has truly been a blessing every Monday through Friday.
I wish I could say that's the end, amen. But as I type, we've been dealing with some issues surrounding the prosthetic posts for a couple of weeks now. The anaplastologist hasn't seen a patient with these issues before (leave it to Kennedy!) and so we're heading to the ENT on Monday to see if there is an internal infection. As you can imagine, this would not be a good thing. If that's the case, I'm not sure what it will mean for Kennedy or the future of the ear. And if there isn't an infection, and they can't figure out what is causing the current issues, I'm also not sure what that will mean for the future of the ear. Best case scenario is that there is no internal infection (and we're not admitted to the hospital!) and that they can easily help us fix the issue so she can continue wearing it to school everyday with no problems. We won't voice worst case scenario because frankly, I just can't go there. If I've learned anything on this journey, it is to never take anything for granted and to know that the other shoe can drop at any moment. We just hope that shoe stays on for now.
So, I ask once again...keep my girl in your thoughts and prayers. She's made it so far on this journey, overcome so many challenges. We were on such a good path with two ears. Please, please let that path continue...
But honestly, I hit the proverbial wall. I was done. Over and out concerning all things medical (or at least the things I could easily ignore). This journey has been exhausting, to say the least. Physically, mentally, emotionally. Sometimes stepping away from it all - from thinking about, from remembering it, from talking about it - is the only way to be able to climb over and conquer that wall.
Getting the ear was a huge deal, as I knew it would be. It took time for Kennedy to get used to it...it felt weird, it made her sweat and itch, and it changed the way she looked. All overwhelming for an eleven-year old. Being a prosthetic, she had the choice of wearing it or not wearing it and for most of the summer, she chose the latter. On top of trying to get used to it, we also had issues with it staying on. She would work up her courage to wear it out, she would open her jaw, and it would pop right off. Not the easiest scenario for a little (overwhelmed) girl to handle. This wasn't to say she didn't like it, or wasn't happy with it. It was just too much for awhile.
In the midst of all of this, Kennedy was facing the daunting challenge of starting middle school. We all remember those days, no? Sigh. But she made the decision that she chose to get the ear for school and by darn, she was going to wear it to school. So off we go to middle school orientation. The first time she's wearing the ear in front of all of her friends. We're in the middle of the auditorium waiting for the program to begin, surrounded by hundreds of other sixth graders and their parents. Kennedy turns around quickly to look for someone...and off pops the ear. She grabs it quickly and stuffs it into my purse, with tears in her eyes. She had steeled herself to attend orientation with two ears. And now, she was having to change her mindset in the middle of it all. I left her there for the student-only portion and I went home and cried. Because at some point, this child deserves a break on this journey for an ear. I mean, is that too much to ask? But she courageously got through the rest of orientation with no problem.
Our awesome anaplastologist worked us in the next day and was able to do some revisions to the ear to stop the popping off. I wasn't sure if this would be enough for Kennedy to try again. I mean honestly, I think I would have given up at this point. But we all know that Kennedy is tougher than I will ever be. And on the first day of school, she asked me to pull her hair up in a ponytail and put her ear on for school. That's my girl! Talk about a looooong day of worrying for this Mama!
But all was well. No one said anything to Kennedy about her new ear and that's just the way she wanted it to go. I came home to an email from the mom of one of her best friend's...she told her mom all about Kennedy's new ear but she knew Kennedy didn't want her to point it out at school. Have I mentioned how awesome Kennedy's friends are? To date, there has been only one incident at school with the ear. Her shoulder hit it in PE class one day and it popped off. The two girls she was playing basketball with didn't say a word, just kept on playing. And Kennedy got through the rest of the day like the strong soul that she is.
I cannot put into words what Kennedy's new ear has done to her confidence level. We all know Kennedy and know she could get through anything, with or without an ear. But it has given her exactly what she needs as she embarks on her new chapter of life. As of right now, she is only sporting two ears for school and that's okay. That's why she wanted it, that's why she chose this route. And I think she is just so comfortable in every other aspect of her life that she doesn't need it to boost her confidence outside of school. But it has truly been a blessing every Monday through Friday.
I wish I could say that's the end, amen. But as I type, we've been dealing with some issues surrounding the prosthetic posts for a couple of weeks now. The anaplastologist hasn't seen a patient with these issues before (leave it to Kennedy!) and so we're heading to the ENT on Monday to see if there is an internal infection. As you can imagine, this would not be a good thing. If that's the case, I'm not sure what it will mean for Kennedy or the future of the ear. And if there isn't an infection, and they can't figure out what is causing the current issues, I'm also not sure what that will mean for the future of the ear. Best case scenario is that there is no internal infection (and we're not admitted to the hospital!) and that they can easily help us fix the issue so she can continue wearing it to school everyday with no problems. We won't voice worst case scenario because frankly, I just can't go there. If I've learned anything on this journey, it is to never take anything for granted and to know that the other shoe can drop at any moment. We just hope that shoe stays on for now.
So, I ask once again...keep my girl in your thoughts and prayers. She's made it so far on this journey, overcome so many challenges. We were on such a good path with two ears. Please, please let that path continue...
Wednesday, June 26, 2013
6 days and Counting...
Who woulda thunk it? Who ever thought that this journey for an ear would have a happy ending? I guess I probably shouldn't consider it a done deal yet...we still have 6 days for the journey to come to a screeching halt. But truly folks, we've never been this close. No surgeries, no skin grafts, no infections, no hospitalizations, no antibiotics, no pain, no anesthesia. Just six days to count down to an ear. Make that, two ears.
And what am I feeling? I'm excited. I'm nervous. I'm overwhelmed. I'm scared. I'm happy. I'm relieved. I'm stressed. I'm sick to my stomach. I'm full of smiles. And I'm hoping that Kennedy is having so much fun at camp this week that she's too busy to feel any of this.
I have to admit that this has hit me harder than I ever imagined it would. When Kennedy first tried the ear mold on a few weeks ago, she cried. I held it together, I got her through the rest of the appointment, I dropped her off at school. Then I lost it. I sat on my porch and I cried all the live-long afternoon. I wish I could explain. I wish I had words. But even weeks later, I don't. I just don't.
Being Kennedy's mom has never been easy (but don't get me wrong, I wouldn't trade it for anything). It has been a journey that has forced me to a be a stronger person, a mean advocate, a better mom (well, I guess to be fair we should probably ask for validation of this from kgg and Katie but for now, I'll go with it). But nothing has been as hard as this journey for an ear. I've said it before and I'll say it again, the life-and-death stuff that we faced in the first half of her life...that sucked beyond words. But those choices were easy. I mean, duh...I'm going to do what my child needs to live.
But this elective stuff? This quality of life stuff? This stuff that could come back to haunt me? This stuff that I constantly second-guess my decisions about? This fine line of you are perfect as you are but let's change you? Let's face it...sometimes it makes me cry. Sometimes it makes me want to punch something. Sometimes it makes me scream "why me? why her?" Sometimes it makes me full of hate that these decisions even need to be made. Sometimes it makes me lose my shit. Then I take one look at that sweet blond, blue-eyed girl, and I carry on. I fight this fight, I make these decisions, I continue on this journey for her and her alone.
And Lord knows that this journey has consumed us. In the last three years, I have lost track of the number of doctor appointments, the pre-ops, the tests, the surgeries, the days spent in the hospital, the number of infections, the number of gifts, of calls/texts/visits trying to cheer her up. And, I have lost track of the number of tears. Not because they don't matter or because they are in the past, but because they matter too much. Disappointment has met us around every corner. Every. Freakin'. Corner. Fortunately, it only has 6 days to figure out which corner we're coming around next...maybe we'll win this game after all!
This last time of trying on the ear, there were no tears. She looked in the mirror and gave her approval. She smirked when her big sister told her it looked good. She even let her take a picture and send it to Daddy. Maybe, just maybe, she's allowing herself a victory. Maybe, just maybe, she is realizing that she will soon have two ears. Finally.
We're about to face a lot of firsts - the first time she wears it in public, the first time she wears it swimming, the first time she wears it to a sleepover, the first picture we take of her wearing it, the first time someone asks something about it, the first time showing up at school with it, the first time she completely forgets that she has a prosthetic ear on. I have no wild thoughts that she will put it on Tuesday and be 100% fine and dandy with this ear. It is a MAJOR life-changing event for her. It will change life for her as she knows it. It will change what she looks like. It may change her confidence level. It will be an adjustment.
But in the long run, it will just be Kennedy. With two ears. Beautiful, as always.
And what am I feeling? I'm excited. I'm nervous. I'm overwhelmed. I'm scared. I'm happy. I'm relieved. I'm stressed. I'm sick to my stomach. I'm full of smiles. And I'm hoping that Kennedy is having so much fun at camp this week that she's too busy to feel any of this.
I have to admit that this has hit me harder than I ever imagined it would. When Kennedy first tried the ear mold on a few weeks ago, she cried. I held it together, I got her through the rest of the appointment, I dropped her off at school. Then I lost it. I sat on my porch and I cried all the live-long afternoon. I wish I could explain. I wish I had words. But even weeks later, I don't. I just don't.
Being Kennedy's mom has never been easy (but don't get me wrong, I wouldn't trade it for anything). It has been a journey that has forced me to a be a stronger person, a mean advocate, a better mom (well, I guess to be fair we should probably ask for validation of this from kgg and Katie but for now, I'll go with it). But nothing has been as hard as this journey for an ear. I've said it before and I'll say it again, the life-and-death stuff that we faced in the first half of her life...that sucked beyond words. But those choices were easy. I mean, duh...I'm going to do what my child needs to live.
But this elective stuff? This quality of life stuff? This stuff that could come back to haunt me? This stuff that I constantly second-guess my decisions about? This fine line of you are perfect as you are but let's change you? Let's face it...sometimes it makes me cry. Sometimes it makes me want to punch something. Sometimes it makes me scream "why me? why her?" Sometimes it makes me full of hate that these decisions even need to be made. Sometimes it makes me lose my shit. Then I take one look at that sweet blond, blue-eyed girl, and I carry on. I fight this fight, I make these decisions, I continue on this journey for her and her alone.
And Lord knows that this journey has consumed us. In the last three years, I have lost track of the number of doctor appointments, the pre-ops, the tests, the surgeries, the days spent in the hospital, the number of infections, the number of gifts, of calls/texts/visits trying to cheer her up. And, I have lost track of the number of tears. Not because they don't matter or because they are in the past, but because they matter too much. Disappointment has met us around every corner. Every. Freakin'. Corner. Fortunately, it only has 6 days to figure out which corner we're coming around next...maybe we'll win this game after all!
This last time of trying on the ear, there were no tears. She looked in the mirror and gave her approval. She smirked when her big sister told her it looked good. She even let her take a picture and send it to Daddy. Maybe, just maybe, she's allowing herself a victory. Maybe, just maybe, she is realizing that she will soon have two ears. Finally.
We're about to face a lot of firsts - the first time she wears it in public, the first time she wears it swimming, the first time she wears it to a sleepover, the first picture we take of her wearing it, the first time someone asks something about it, the first time showing up at school with it, the first time she completely forgets that she has a prosthetic ear on. I have no wild thoughts that she will put it on Tuesday and be 100% fine and dandy with this ear. It is a MAJOR life-changing event for her. It will change life for her as she knows it. It will change what she looks like. It may change her confidence level. It will be an adjustment.
But in the long run, it will just be Kennedy. With two ears. Beautiful, as always.
Thursday, May 16, 2013
Words of Wisdom
We have been on this journey for an ear for a long time. We've hit many roadblocks, we've had may disappointments, we've cried many tears. Even so, I have an idea that our toughest moments are yet to come. Although Kennedy chose this current path and is very excited to receive her ear in a few weeks, she is eleven. She's entering a new stage of life and emotions are at the surface. She's never had a right ear. This ear will change what she looks like. She has to be a huge part of the creation process and talking to doctors is not her strong suit. She's going to have to show up at school one day with two ears, exciting but anxiety-provoking in a child who doesn't like attention. I recently asked Team Kennedy to share what pulls them through when the waters aren't smooth sailing. The response was awesome, too awesome to share with only Kennedy. In hopes that something here might help you someday...
My dearest Kennedy - There is no promise that life will be easy. Some people may have a harder road than others. And frankly sometimes, for all of us, life just plain sucks. But when life gets you down, when you get overwhelmed, when you just need some reassurance, or just because...some words and ideas from your friends, your family, and Team Kennedy to bring you peace.
My dearest Kennedy - There is no promise that life will be easy. Some people may have a harder road than others. And frankly sometimes, for all of us, life just plain sucks. But when life gets you down, when you get overwhelmed, when you just need some reassurance, or just because...some words and ideas from your friends, your family, and Team Kennedy to bring you peace.
Some people turn to something that brings them comfort:
- Ice cream.
- Chocolate fixes a lot of heartaches.
- My pj's, a blankie, and a book to get lost in.
- I play my favorite song, kind of like an anthem.
- I turn up the music as loud as it will go and just let it take over.
- Mindless TV.
- Birthday cake...makes you happy every time.
- Guardian angels.
- My wiener dog! (yes, you know who this came from)
- Mindless TV.
- Birthday cake...makes you happy every time.
- Guardian angels.
- My wiener dog! (yes, you know who this came from)
Some people turn to God and the Bible:
- Pray. Just pray.
- Remember when waves are crashing over your head, they're under His feet.
- I can do all things through Christ who strengthens me.
- God doesn't bring you to it if he can't bring you through it.
- So let us pursue the things of peace, and the the things for building up one another.
- In this world you will have trouble; but be of good cheer, I have overcome the world.
- ...tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who has given to us.
- When the Lord closes one door, somewhere He opens a window.
Some people have their favorite quote (their own or well-known):
- "Sometimes crying or laughing are the only options left, and laughing feels better right now."
- "Everything will seem better after a good night's sleep."
- "Just breathe."
- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
- "It's sink or swim, those are my only two options."
- "Just keep swimming, just keep swimming."
- "This too shall pass."
- "You can't have a rainbow without a little rain."
- "I'll think about that tomorrow. After all, tomorrow is another day."
- "Only in darkness can you see stars."
- "It takes rough seas to make a good sailor."
- "What doesn't kill you only makes you stronger."
- "Being strong is something to be proud of."
- "For she was beautiful her beauty made the bright world dim, and everything beside seemed like the fleeting image of a shade."
- "I love you, all the numbers in the world."
- "Courage does not always roar. Sometimes courage is the quiet voice that says at the end of the day, 'I will try again tomorrow.'"
- "Courage is being scared to death and saddling up anyway."
- "Tough times never last, but tough people do."
- "Hard times don't create heroes. It is during hard times when the 'hero' within us is revealed."
- "Keep your face always toward the sunshine, and shadows will fall behind you."
- "Celebrate we will, because life is short but sweet for certain."
- "Celebrate the little things along the way because those are the things that are gonna get you through the hard days."
- "We cannot control the waves but we can learn to surf."
- "Promise me you'll always remember that you are braver than you believe, stronger than you seem, and smarter that you think."
- "Keep smiling!"
- "Try to be like the turtle, at ease in your own shell."
- "Find a place inside where there is joy, and the joy will burn out the pain."
- "Hope is a walking dream."
- "Your present circumstance don't determine where you can go, they merely determine where you start."
- "I can't change the direction of the wind, but I can adjust my sails to always reach my destination."
- "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
- "Scars don't dictate where you are going, only where you have been."
And one day I found this on my kitchen table, written by a very wise little soul, only nine years old.
I keep it handy so I can always pull it out. Your Papa asked for a copy to frame. I've had Team Kennedy members tell me that it has helped them more than once.
Life is a gift
A gift of hope
A gift of happiness
And no matter how
hard or miserable
life is
It can always be worse.
Whatever helps you, hold it close during the toughest of times. You are braver than anyone I've ever met. You are stronger than anyone I've ever known. You are loved more than you will ever know.
Love,
M
- Remember when waves are crashing over your head, they're under His feet.
- I can do all things through Christ who strengthens me.
- God doesn't bring you to it if he can't bring you through it.
- So let us pursue the things of peace, and the the things for building up one another.
- In this world you will have trouble; but be of good cheer, I have overcome the world.
- ...tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who has given to us.
- When the Lord closes one door, somewhere He opens a window.
Some people have their favorite quote (their own or well-known):
- "Sometimes crying or laughing are the only options left, and laughing feels better right now."
- "Everything will seem better after a good night's sleep."
- "Just breathe."
- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
- "It's sink or swim, those are my only two options."
- "Just keep swimming, just keep swimming."
- "This too shall pass."
- "You can't have a rainbow without a little rain."
- "I'll think about that tomorrow. After all, tomorrow is another day."
- "Only in darkness can you see stars."
- "It takes rough seas to make a good sailor."
- "What doesn't kill you only makes you stronger."
- "Being strong is something to be proud of."
- "For she was beautiful her beauty made the bright world dim, and everything beside seemed like the fleeting image of a shade."
- "I love you, all the numbers in the world."
- "Courage does not always roar. Sometimes courage is the quiet voice that says at the end of the day, 'I will try again tomorrow.'"
- "Courage is being scared to death and saddling up anyway."
- "Tough times never last, but tough people do."
- "Hard times don't create heroes. It is during hard times when the 'hero' within us is revealed."
- "Keep your face always toward the sunshine, and shadows will fall behind you."
- "Celebrate we will, because life is short but sweet for certain."
- "Celebrate the little things along the way because those are the things that are gonna get you through the hard days."
- "We cannot control the waves but we can learn to surf."
- "Promise me you'll always remember that you are braver than you believe, stronger than you seem, and smarter that you think."
- "Keep smiling!"
- "Try to be like the turtle, at ease in your own shell."
- "Find a place inside where there is joy, and the joy will burn out the pain."
- "Hope is a walking dream."
- "Your present circumstance don't determine where you can go, they merely determine where you start."
- "I can't change the direction of the wind, but I can adjust my sails to always reach my destination."
- "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."
- "Scars don't dictate where you are going, only where you have been."
And one day I found this on my kitchen table, written by a very wise little soul, only nine years old.
I keep it handy so I can always pull it out. Your Papa asked for a copy to frame. I've had Team Kennedy members tell me that it has helped them more than once.
Life is a gift
A gift of hope
A gift of happiness
And no matter how
hard or miserable
life is
It can always be worse.
Whatever helps you, hold it close during the toughest of times. You are braver than anyone I've ever met. You are stronger than anyone I've ever known. You are loved more than you will ever know.
Love,
M
Monday, April 29, 2013
Happy Birthday Kennedy!
Kennedy turns 11 next week. And more than ever, I'm seeing signs of her growing up. She's always been mature (thanks to her life experiences), but she's definitely growing up and growing into a very caring young lady. Last weekend, I saw her be an awesome "big sister" to a friend's little boy. She took him under her wing and took care of him instead of being annoyed by little boy antics. This past weekend she made the announcement that she wants to take a Christmas trip instead of Santa visiting this year. The fact that she is picking making memories with her family over asking for material things warms my heart. Today when she noticed that our dog was injured, she dropped everything, squeezed in beside her, and spent the next thirty minutes petting her and talking to her in a soothing voice. In the last few weeks she has started following several kids, via my Facebook, with illnesses or injuries. And she doesn't just read about them and move on...she talks about them, she thinks about them, she revisits their pages regularly, she truly cares about their journey.
Seems like every birthday, we're looking forward to something in the coming year. When she turned two, we looked forward to her growing (kids with her syndrome often have trouble growing in the first year which can lead to more health issues). When she turned three, we looked forward to expanding speech therapy services to give her the powerful tool of speech. When she turned five, we looked forward to saving her life with a titanium rib (okay, maybe not looked forward to it but you get my point). When she turned eight, we looked forward to her going live with her BAHA and hearing natural sound for the first time in her life. We also looked forward to her getting an ear. When she turned nine, we looked forward to her getting an ear (again). When she turned ten, we looked forward to her getting an ear (again, this time a prosthetic ear).
Kennedy is scheduled to receive her new ear on June 20th. So it might seem natural that that's what I'm looking forward to for Kennedy in year 11. But that's not it. Don't get me wrong, that's exciting. And a long-time coming. We're all excited, scared, nervous, proud, eager, and on and on.
But when she turns eleven, I look forward to a year with NO surgeries. I look forward to a year with NO procedures. I look forward to a year with NO major medical decisions. I look forward to a year with few and far between doctor appointments. This year will be like no others.
I look forward to her "graduating" fifth grade, saying goodbye to her elementary school era. I look forward to her embarking on the journey known as middle school. I look forward to her choosing to be who she wants to be. I look forward to her making new friends and to her best friends, becoming a better friend which only comes with age. I look forward to watching her continue to grow as a person. I look forward to seeing how big her heart is.
I look forward to her being able to just be...
Seems like every birthday, we're looking forward to something in the coming year. When she turned two, we looked forward to her growing (kids with her syndrome often have trouble growing in the first year which can lead to more health issues). When she turned three, we looked forward to expanding speech therapy services to give her the powerful tool of speech. When she turned five, we looked forward to saving her life with a titanium rib (okay, maybe not looked forward to it but you get my point). When she turned eight, we looked forward to her going live with her BAHA and hearing natural sound for the first time in her life. We also looked forward to her getting an ear. When she turned nine, we looked forward to her getting an ear (again). When she turned ten, we looked forward to her getting an ear (again, this time a prosthetic ear).
Kennedy is scheduled to receive her new ear on June 20th. So it might seem natural that that's what I'm looking forward to for Kennedy in year 11. But that's not it. Don't get me wrong, that's exciting. And a long-time coming. We're all excited, scared, nervous, proud, eager, and on and on.
But when she turns eleven, I look forward to a year with NO surgeries. I look forward to a year with NO procedures. I look forward to a year with NO major medical decisions. I look forward to a year with few and far between doctor appointments. This year will be like no others.
I look forward to her "graduating" fifth grade, saying goodbye to her elementary school era. I look forward to her embarking on the journey known as middle school. I look forward to her choosing to be who she wants to be. I look forward to her making new friends and to her best friends, becoming a better friend which only comes with age. I look forward to watching her continue to grow as a person. I look forward to seeing how big her heart is.
I look forward to her being able to just be...
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