I was sitting at the dinner table last night, listening to Kennedy talk. Yes, we sit at the dinner table. I have always been a firm believer of this concept, which I have my own parents to thank. From birth, my girls have sat at the table for dinner with us, eating what we eat once they were old enough, and spending time as a whole family. Sometimes a lot is said and sometimes it is pretty quiet. But I digress.
I was sitting at the dinner table, listening to Kennedy talk. Most of you probably think Kennedy is on the shy side. And outside of our home, outside of our family, she is (although she's come a LONG way). But when Kennedy is comfortable and in a talking mood, those close to her will tell you that it is hard to get her to be quiet. And she's like her Dad - telling long stories with details that just don't matter. There are times we all (sadly) tune her out till she gets to her point. And honestly, I don't even remember what she was talking about last night. I wasn't listening to her story, but I was listening to the words.
Kennedy has multiple whammies against her when it comes to speech. She has facial paralysis. She has palate paralysis. She may have some other paralysis of sorts within her mouth and throat that we aren't sure about and she wouldn't know the difference to tell us. She has floppy vocal cords. She has constant sinus drainage. She could not hear well for her first three years of life when speech was ramping up. She hears herself differently than you and I hear ourselves because of her severe hearing loss and use of BAHA (which as a side note, if you talk close to you will hear your own voice echo within her head...pretty freaky phenomenon).
But the beautiful thing is, she talks. And most people can understand her, although that always hasn't been the case. And she has come so far.
For the first few years of life, only those around her on a daily basis could understand what she was saying. We had to do a lot of interpreting for others. Then we started a preschool speech therapy program offered by our local school system. There we met Ms. Ortosky (who is a Team Kennedy follower!), who will ever hold a very special place in my heart and although she doesn't wear a white coat like our other angels, she is considered one of our angels nevertheless. Ms. Ortosky worked with Kennedy for two years and made strides with her speech that we never thought would be possible. The day she conquered the "s" sound, I cried like a baby in the hallway (where I sat during sessions) while Ms. Ortosky celebrated with Kennedy in their room.
We unfortunately graduated from preschool speech and entered the world of elementary speech therapy. Private speech therapy agencies had atmospheres that were too much like a doctor's office and were not a good fit for Kennedy so we were limited to what was offered in the schools. In her six elementary years, Kennedy went through three speech therapists. The last one made some other big strides like the "sh" sound and the "r" sound in certain letter combinations. And then in fifth grade it was decided that the social non-acceptance of speech therapy from peers (more on this soon) was far more detrimental than any further success that the therapy could provide Kennedy, so we exited from speech services.
Almost thirteen years later, speech doesn't come easy for Kennedy. She still struggles with the paralysis issue and she doesn't sound like others when she talks. She gets lazy with certain sounds if she doesn't pay attention. When she is sick or really tired, she slurs a lot of her speech and even I have a hard time understanding her. She still has issues with some of the sounds -- "r" is a super-tricky one for her when it falls in certain places within a word. The "str" takes a lot of thinking on her part...the "t" often gets left out of such words. You and I speak and never think about it...it is second nature for Kennedy to think about how she speaks.
What I'm most proud of is that she doesn't let this bother her. I know she gets made fun of at times because of the way she says certain words or how she sounds in general when she talks. I know she gets irritated at me when I point something out and remind her how it should be said (this is done sparingly and in a loving way folks, only as a gentle reminder). I know she gets too tired and feels too crappy at times to even try. But she keeps talking. To everyone. And if she needs to, she repeats something. As many times as someone needs her to (she may spell it out if she gets irritated enough).
You know I'm all about acceptance for those who look different. Know that I'm also all about acceptance for those who sound different. Kennedy will forever work on her speech but she will never sound like most people when she talks. Too many whammies out of her control. Let's try to teach our kids that speech isn't a given for everyone. And not everyone who can talk, sounds like you or I. And it is okay for kids to attend speech therapy in school and this is not a reason to make fun of someone.
But the beautiful thing is, she talks.
Thursday, March 19, 2015
Friday, February 20, 2015
The Other Shoe
Once upon a time, I had to make a life or death decision for my baby girl. Between her scoliosis and Thoracic Insufficiency Syndrome (TIS), she was going to die sooner rather than later if we didn't take action. With her syndrome, skeletal issues had plagued her since birth. At age three, we were told that the time was coming to make a decision. By age four and a half, we were told we were almost out of time. Her rib cage on the left side was not growing, her heart and her lung were being squeezed, and before long they wouldn't be able to work any longer. She had already started fighting life-threatening pneumonia infections due to decreased lung capacity, even ending up in the hospital on her first trip to Disney World. She was having trouble keeping up with her peers. Yes, it was time.
Kennedy's orthopedic surgeon was the first doctor in the state of North Carolina to be approved to implant the VEPTR, a titanium rib. She was the perfect candidate so a date was set. A month after turning five, I kissed my baby as she drifted off in the operating room. Her doctor implanted 2 VEPTR rods, one against her spine that would help with scoliosis and one further out, that would be used to stretch her rib cage.
The plan was to keep her on life support in a medicated coma for three days, for pain relief. She was young, this was a painful surgery. So we waited. We kept vigil. And we were more than ready when it was time to pull her out of the coma. Ryan and I were in the room as they pulled her off sedation and removed the ventilator. But our joy soon turned to despair. As the tube was pulled out, her throat immediately swelled shut behind it. She coded and we watched our baby die right in front of us. This sweet little girl with her blonde braids convulsing on the bed, with blood filling the mask as they tried to bag her. Her lungs were pulling blood from everywhere they could to try and breathe again. Numbers reaching zero, machines screeching. Every sight, every sound - burned into my memory forever. After what seemed like an eternity, the PICU doctor was able to intubate her again, despite the swelling. Her stats slowly crept up. And we waited another six long days to try it again. Six days of setbacks, six days of heavy sedation meds, six days of infection, six days of not knowing if brain damage was suffered. Nine days after surgery, she was extubated successfully. She suffered drug withdrawal like a heroin addict. She had to learn how to walk, talk, and eat again. She spent two more weeks in the hospital. She went through two more surgeries - one to fix a broken spinal rod and another to remove the spinal rod. The rod to stretch her rib cage worked great and several other surgeries followed over the next few years to stretch her rib cage.
And it worked. Her rib cage was stretched and stretched and her heart and her lung were given room to grow and to work. it also helped stabilize her spine/scoliosis. Several years later, her rib cage was growing on its own and her spinal curve was holding steady and the decision was made to remove the VEPTR. For five years the VEPTR did its job, but Kennedy's rib cage was finally doing what it should have been doing all along -- growing. And removal of the VEPTR meant fewer surgeries (to expand it to match the growing rib cage) and the ceasing of trigger migraines, an issue that plagued her with any sudden movement like a sneeze.
And here we are three years later. For reasons unknown, Kennedy's rib cage has slowed (or stopped?) growing on its own. The rib cage has multiple important jobs and one is to support the spine. Since growth is not happening, her spine is twisting. Since her spine is twisting, her good shoulder blade is shifting. And she would kill me if she read this, but it is also affecting her development in the front. Her skeletal system is slowly failing her.
I think she's most upset about having to wear a brace. It will be big, it will be uncomfortable, it will be a pain in the ass. She is focused on the here and now. But I'm most upset about not knowing. Not knowing whether the brace will help. Not knowing what her spine will do in the years to come. Not knowing if her rib cage has stopped growing completely. Not knowing if we're going to be facing life and death TIS decisions again. Not knowing what surgeries and other treatments she may be facing in the future. Not knowing how her heart and lung are going to fare. Not knowing why once again we're back here.
I always say that with her syndrome, I'm forever waiting for the other shoe to drop. I'm afraid that shoe is about to fall. And I can't stop it. No matter how tight I tie those strings. And as a mom, this is truly the worst feeling in the world.
Kennedy's orthopedic surgeon was the first doctor in the state of North Carolina to be approved to implant the VEPTR, a titanium rib. She was the perfect candidate so a date was set. A month after turning five, I kissed my baby as she drifted off in the operating room. Her doctor implanted 2 VEPTR rods, one against her spine that would help with scoliosis and one further out, that would be used to stretch her rib cage.
The plan was to keep her on life support in a medicated coma for three days, for pain relief. She was young, this was a painful surgery. So we waited. We kept vigil. And we were more than ready when it was time to pull her out of the coma. Ryan and I were in the room as they pulled her off sedation and removed the ventilator. But our joy soon turned to despair. As the tube was pulled out, her throat immediately swelled shut behind it. She coded and we watched our baby die right in front of us. This sweet little girl with her blonde braids convulsing on the bed, with blood filling the mask as they tried to bag her. Her lungs were pulling blood from everywhere they could to try and breathe again. Numbers reaching zero, machines screeching. Every sight, every sound - burned into my memory forever. After what seemed like an eternity, the PICU doctor was able to intubate her again, despite the swelling. Her stats slowly crept up. And we waited another six long days to try it again. Six days of setbacks, six days of heavy sedation meds, six days of infection, six days of not knowing if brain damage was suffered. Nine days after surgery, she was extubated successfully. She suffered drug withdrawal like a heroin addict. She had to learn how to walk, talk, and eat again. She spent two more weeks in the hospital. She went through two more surgeries - one to fix a broken spinal rod and another to remove the spinal rod. The rod to stretch her rib cage worked great and several other surgeries followed over the next few years to stretch her rib cage.
And it worked. Her rib cage was stretched and stretched and her heart and her lung were given room to grow and to work. it also helped stabilize her spine/scoliosis. Several years later, her rib cage was growing on its own and her spinal curve was holding steady and the decision was made to remove the VEPTR. For five years the VEPTR did its job, but Kennedy's rib cage was finally doing what it should have been doing all along -- growing. And removal of the VEPTR meant fewer surgeries (to expand it to match the growing rib cage) and the ceasing of trigger migraines, an issue that plagued her with any sudden movement like a sneeze.
And here we are three years later. For reasons unknown, Kennedy's rib cage has slowed (or stopped?) growing on its own. The rib cage has multiple important jobs and one is to support the spine. Since growth is not happening, her spine is twisting. Since her spine is twisting, her good shoulder blade is shifting. And she would kill me if she read this, but it is also affecting her development in the front. Her skeletal system is slowly failing her.
I think she's most upset about having to wear a brace. It will be big, it will be uncomfortable, it will be a pain in the ass. She is focused on the here and now. But I'm most upset about not knowing. Not knowing whether the brace will help. Not knowing what her spine will do in the years to come. Not knowing if her rib cage has stopped growing completely. Not knowing if we're going to be facing life and death TIS decisions again. Not knowing what surgeries and other treatments she may be facing in the future. Not knowing how her heart and lung are going to fare. Not knowing why once again we're back here.
I always say that with her syndrome, I'm forever waiting for the other shoe to drop. I'm afraid that shoe is about to fall. And I can't stop it. No matter how tight I tie those strings. And as a mom, this is truly the worst feeling in the world.
Monday, January 12, 2015
Wonder: An Opportunity to Raise Awareness
Wonder, by RJ Palacio. If you haven't read it yet you should. No matter how old you are. This fiction book is about a little boy with a craniofacial syndrome; it gives a good picture into this little boy's life and the challenges that he faces, including bullying.
Kennedy's 7th grade is currently reading this book. Her very sweet language arts teacher asked if Kennedy would like to share anything with the class about her experiences, even if she just wanted to write something and have her teacher read it. She immediately said no. But after thinking about it for awhile, she agreed that it was a good opportunity to raise awareness of craniofacial syndromes. So we sat down and wrote this together.
"Like Auggie, I was born with a craniofacial syndrome. Mine is called Goldenhar Syndrome and it is a complicated syndrome. As part of this syndrome, I was born with only one kidney, I have scoliosis (curving) of the spine, I have thoracic insufficiency syndrome (where my rib cage doesn’t grow right and squeezes my lung and heart), I can only hear with a hearing aid, I am blind in my right eye, my right jaw is short, I have paralysis on the right side of my face and in my mouth, and I was born without an ear. So far, I have had 19 surgeries – to stretch my rib cage to give my lung and heart room to grow, to fix my spine, to put a hearing aid into my skull, to try and reconstruct my ear and when that didn’t work, to put a bar in my skull so I can wear my prosthetic ear. My 20th surgery will be to fix my facial paralysis and help my smile be more equal. Surgeries are never easy and usually mean infections and allergic reactions and hospital stays. But I’m lucky to have great doctors who try to help me be who I want to be and try to help me have the best life I can have.
What
I want everyone to know is that what’s on the outside isn’t what matters. We
are all different, we are all unique in some way. You shouldn’t stare at, point
at, or make fun of someone who looks different. Or talks different. Or hears
different. Or is different in some other way. You should never judge anyone
because of their differences. And if you see others do this, help teach them
the right thing to do. Syndromes like this do not define Auggie or myself. But
they do make us stronger!"
Kennedy's 7th grade is currently reading this book. Her very sweet language arts teacher asked if Kennedy would like to share anything with the class about her experiences, even if she just wanted to write something and have her teacher read it. She immediately said no. But after thinking about it for awhile, she agreed that it was a good opportunity to raise awareness of craniofacial syndromes. So we sat down and wrote this together.
"Like Auggie, I was born with a craniofacial syndrome. Mine is called Goldenhar Syndrome and it is a complicated syndrome. As part of this syndrome, I was born with only one kidney, I have scoliosis (curving) of the spine, I have thoracic insufficiency syndrome (where my rib cage doesn’t grow right and squeezes my lung and heart), I can only hear with a hearing aid, I am blind in my right eye, my right jaw is short, I have paralysis on the right side of my face and in my mouth, and I was born without an ear. So far, I have had 19 surgeries – to stretch my rib cage to give my lung and heart room to grow, to fix my spine, to put a hearing aid into my skull, to try and reconstruct my ear and when that didn’t work, to put a bar in my skull so I can wear my prosthetic ear. My 20th surgery will be to fix my facial paralysis and help my smile be more equal. Surgeries are never easy and usually mean infections and allergic reactions and hospital stays. But I’m lucky to have great doctors who try to help me be who I want to be and try to help me have the best life I can have.
Today, Kennedy's teacher read her story as part of a non-fiction connection lesson (connecting non-fiction text with the fiction text in the book). I received this sweet note from her this afternoon: Students were enthralled with
Kennedy's paper. Friend 1 and Friend 2 (each in separate classes) each
guessed it was Kennedy but quickly caught my eye and kept it quiet. The kids were in awe of how much this person had been through, how
positive they were and how strong. They were all in shock when they found
out it was Kennedy. Some didn't realize Kennedy had
"problems". Some never heard her complain so they assumed she
was never in pain or had concerns. They all felt that they were
helping her by not giving her medical issues any attention, but now they
want to be more supportive. Please do let me know if Kennedy has further
surgery or is hospitalized or could use our support in any way. I
hope Kennedy knows she has a huge support system here and she needs to use
it. Please
thank her for me....thank her for being so candid and for being her.
My point in sharing is to raise more awareness. I know many schools are incorporating this book into their curriculum. If your child or child's teacher would like to learn more about Kennedy and incorporate her real story into the lesson, we'd be happy to be included. If you are a teacher, we encourage you to read this with your students. And if you're parent, whether your child is reading this in school or not, we encourage you to read it with your child and discuss it in real terms. Don't hesitate if we can help in any way to make this real! To Kennedy, this story is real..,she lives it. Awareness and acceptance...pass it on!
Tuesday, November 18, 2014
The Trip of a Lifetime
The trip of a lifetime. We all say it. Most of us probably mean it. But until last week, I had no true idea what a trip of a lifetime was. I've been trying to write this post for days, only to realize every time that I simply cannot put into words what transpired, the emotions that were felt, and what it meant to me. I can promise you that this blog won't do it justice.
Amazing. Incredible. Unbelievable. I mean, how do you describe what Children's Miracle Network Hospitals did for these Champions (with the help of Delta, Marriott, and many other sponsors)? But you know what was even more amazing than the trip itself? The Champions. WOW. Every story is different, every story is awe-inspiring. And the little blurb about each Champion that is included on the CMNH website or in the Champion booklets they gave us? Doesn't do justice to a single one of these kiddos. Each and every single one of them was a Champion. A hero. An inspiration. They have fought wars, received battle scars, and a lot are still fighting to win. They are strong, brave, beautiful. They are sweet, loving, funny. Some are outgoing, some are shy (I'm not naming names). Some loved the limelight, some were overwhelmed by it all (again, not naming names!) and took awhile to find their place. But they all loved their week.
I have to admit (here comes the heavy stuff)...one thing I wrestled with internally all week is whether we deserved to be there. The thing is, I KNOW in my heart that Kennedy deserved to be there. But hearing the other stories, seeing the other wars. Did hers even compare? So there was a lot of reminding myself that no one was comparing. That every child has a different story and every child deserved to be there. That she has been through so much on this journey (for my new readers: 19 surgeries, 2 stints on life support, dying once, life-threatening conditions, life-threatening infections, scoliosis and other skeletal issues, daily afflictions like hearing, sight, and speech, and a lot of going to hell and back over the last 12 years). That our friends at Duke Children's nominated her for a reason, that they find her and her story inspiring. That she is more than deserving of every good thing that comes her way, given all the bad that she's battled through.
Now let's talk a minute about the moms. I met so many FABULOUS moms over the week (and we all know that I am shy myself and this is never an easy thing for me!). Talk about Champions! Being a parent is not an easy job. Being the parent of a sick, injured, or medically-challenged child is definitely not an easy job. But these woman were amazing and deserved every good thing that came their way last week. And Chico's made sure that good things came our way...free clothes, bathrobe, jewelry and other accessories, hair and make-up, lunch and champagne. I think we all had to do some repacking to get it all home! Not to mention the mom video that Chico's sponsored (I shared on my personal page Monday). It was played during the medal ceremony in Orlando and I held the tears back till Kennedy appeared on the screen saying "My mom is my best friend." Um, how do I keep it together after that? Needless to say, I came away with so many friends, so many inspirations, so many other moms in my life who just get it. And we know that behind every inspiring child, is an awesome mom ;).
That doesn't mean that the dads aren't great too! And let's not forget about the siblings. I know Katie has had so many reasons to be jealous over the last 12 years, to feel left out. But she has been nothing but understanding and loving of her sister. I am forever thankful to her nursing professors, who realized this was too important to miss, more important than anything she could learn in class. And all of the siblings that I met last week? Nothing short of amazing. They have to be just as brave as their medical siblings and they each deserve a special award. Sometimes seeing these siblings love their Champion choked me up as much as the Champions themselves.
And oh my gosh, the opportunities. Meeting the First Lady and First Dogs. Getting to see parts of the Capitol that you don't see everyday. An awesome movie night. Spending Veteran's Day in our nation's capital and being there for the Concert for Valor honoring our vets. Being part of the wreath laying ceremony at Arlington. Treated to a charted flight by Delta to Orlando. A hero's welcome at every airport/hotel we arrived at. A medal ceremony with Marie Osmond, John Schneider, Nick Cannon, and Miss America. Being pampered at the moms' event. Meeting so many hospital partners and sponsors at the pin trading event (and seeing some of our favorite Duke peeps!). Character dinner with guest appearances by Lady Antebellum, Mickey, Minnie, Donald, Goofy, and Pluto. A private concert by Lady A and the opportunity to join them on stage. A free PlayStation 4. Serving as Grand Marshalls of the Magic Kingdom parade. Enjoying Mickey's Very Merry Christmas Party. And the only thing we had to worry about the entire week is to make sure we got to our next destination on time. Because that's how awesome CMNH is.
I know my little Champion loved her trip. And I'm so thankful that she was old enough to appreciate it all, even the little things. She may have been shy and overwhelmed and took awhile to feel comfortable, but she enjoyed it all. Even through the pain, which broke my heart. Talk about one of those mom guilt moments? Realizing too late that three weeks was not enough time to recover from the surgery you scheduled (at her request, but still). And only bringing Tylenol. Her poor little leg. It broke my heart watching her trying to have fun, but fighting through pain to do so. Thankfully the hotel in DC let us borrow a wheelchair to tackle the city. And by the time we hit Disney, she was beyond needing a wheelchair. Looking back at the pictures, I can tell that she was favoring her leg in almost every picture. And the thing is, she just suffered quietly. Like she always does, never wanting attention brought to herself. Like so many of the kids we spent the week with.
I think I ran the gamut of emotions. I can't think of one that didn't appear at one point or another during the week. I held back so many tears and let so many others fall. I met 65 heroes. Plus their hero moms, dads, and siblings. In one week. Who can say that? I mean truly, who can say that?
It was definitely, hands-down, without a doubt, the trip of a lifetime.
Amazing. Incredible. Unbelievable. I mean, how do you describe what Children's Miracle Network Hospitals did for these Champions (with the help of Delta, Marriott, and many other sponsors)? But you know what was even more amazing than the trip itself? The Champions. WOW. Every story is different, every story is awe-inspiring. And the little blurb about each Champion that is included on the CMNH website or in the Champion booklets they gave us? Doesn't do justice to a single one of these kiddos. Each and every single one of them was a Champion. A hero. An inspiration. They have fought wars, received battle scars, and a lot are still fighting to win. They are strong, brave, beautiful. They are sweet, loving, funny. Some are outgoing, some are shy (I'm not naming names). Some loved the limelight, some were overwhelmed by it all (again, not naming names!) and took awhile to find their place. But they all loved their week.I have to admit (here comes the heavy stuff)...one thing I wrestled with internally all week is whether we deserved to be there. The thing is, I KNOW in my heart that Kennedy deserved to be there. But hearing the other stories, seeing the other wars. Did hers even compare? So there was a lot of reminding myself that no one was comparing. That every child has a different story and every child deserved to be there. That she has been through so much on this journey (for my new readers: 19 surgeries, 2 stints on life support, dying once, life-threatening conditions, life-threatening infections, scoliosis and other skeletal issues, daily afflictions like hearing, sight, and speech, and a lot of going to hell and back over the last 12 years). That our friends at Duke Children's nominated her for a reason, that they find her and her story inspiring. That she is more than deserving of every good thing that comes her way, given all the bad that she's battled through.
Now let's talk a minute about the moms. I met so many FABULOUS moms over the week (and we all know that I am shy myself and this is never an easy thing for me!). Talk about Champions! Being a parent is not an easy job. Being the parent of a sick, injured, or medically-challenged child is definitely not an easy job. But these woman were amazing and deserved every good thing that came their way last week. And Chico's made sure that good things came our way...free clothes, bathrobe, jewelry and other accessories, hair and make-up, lunch and champagne. I think we all had to do some repacking to get it all home! Not to mention the mom video that Chico's sponsored (I shared on my personal page Monday). It was played during the medal ceremony in Orlando and I held the tears back till Kennedy appeared on the screen saying "My mom is my best friend." Um, how do I keep it together after that? Needless to say, I came away with so many friends, so many inspirations, so many other moms in my life who just get it. And we know that behind every inspiring child, is an awesome mom ;).
That doesn't mean that the dads aren't great too! And let's not forget about the siblings. I know Katie has had so many reasons to be jealous over the last 12 years, to feel left out. But she has been nothing but understanding and loving of her sister. I am forever thankful to her nursing professors, who realized this was too important to miss, more important than anything she could learn in class. And all of the siblings that I met last week? Nothing short of amazing. They have to be just as brave as their medical siblings and they each deserve a special award. Sometimes seeing these siblings love their Champion choked me up as much as the Champions themselves.
And oh my gosh, the opportunities. Meeting the First Lady and First Dogs. Getting to see parts of the Capitol that you don't see everyday. An awesome movie night. Spending Veteran's Day in our nation's capital and being there for the Concert for Valor honoring our vets. Being part of the wreath laying ceremony at Arlington. Treated to a charted flight by Delta to Orlando. A hero's welcome at every airport/hotel we arrived at. A medal ceremony with Marie Osmond, John Schneider, Nick Cannon, and Miss America. Being pampered at the moms' event. Meeting so many hospital partners and sponsors at the pin trading event (and seeing some of our favorite Duke peeps!). Character dinner with guest appearances by Lady Antebellum, Mickey, Minnie, Donald, Goofy, and Pluto. A private concert by Lady A and the opportunity to join them on stage. A free PlayStation 4. Serving as Grand Marshalls of the Magic Kingdom parade. Enjoying Mickey's Very Merry Christmas Party. And the only thing we had to worry about the entire week is to make sure we got to our next destination on time. Because that's how awesome CMNH is.
I think I ran the gamut of emotions. I can't think of one that didn't appear at one point or another during the week. I held back so many tears and let so many others fall. I met 65 heroes. Plus their hero moms, dads, and siblings. In one week. Who can say that? I mean truly, who can say that?
It was definitely, hands-down, without a doubt, the trip of a lifetime.
Monday, July 14, 2014
The Tides Are Turning
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.
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.
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.
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