It has been awhile. And I'd like to say that is because I haven't needed to write, but I would be lying. I've started a new blog about ten different times since I last posted. But my words come from my heart when I write, and my heart has been jumbled.
The last half of 2015 and all of 2016 just sucked. Looking back, I truly think this period has been the worst of this entire journey. And I don't say this lightly, seeing as I've watched my child die and be brought back to life, I've watched her suffer through drug withdrawal similar to what a heroin user has to endure, I've watched her have to learn to walk, talk, and eat again, I've watched her fight for her life while on life support, I've watched her climb back from the edge multiple times.
But as much as all of that hurt me to watch, hurt me to wonder, hurt me to endure...she didn't know. She was young, she was drugged, she doesn't remember. For several years after the dying episode, which took so many drugs to keep her calm and sedated for 6 more days, she would cry out in her sleep, "Let me wake up! I want to wake up!" But consciously, she remembered nothing, she remembers nothing. However, I can assure you that it is forever etched into my brain, every minute of it.
But now. Now she is 14. She is aware. Of everything that she has endured, of the unfairness of it all, of how different her life is from her peers. Emergency brain surgery, the recovery from hell. And I mean the depths of hell. 37% lung function, spinal fusion with a brain still trying to heal. An infection, a second spinal surgery, IV antibiotics, oral antibiotics for almost a year. And still no improvement in lung function. Constant back pain.
You all know what it is like when you have an infection. You're tired, worn out. It takes all you have for your body to fight the infection. Some of you know what it is like to not be able to breathe well, whether from a lung infection, asthma, etc. You're tired, worn out. It takes all you have for your body to focus on breathing. And some of you know what it is like to live in constant pain (I know this one myself). You're tired, worn out. It takes all you have for your body to function through the pain.
Now. Imagine. All. Three. At. Once. Every single day of your life. Throw in that your brain still needs a lost of rest itself. And still having to live life - go to school, do homework, have a social life. I honestly don't know how she does it. There are days that my pain keeps me on the couch. On a normal day, my body is often so worn out by 5pm that it is hard to even walk to the mailbox or let the pups out. She is often right beside me, but she handles it far better than I ever will.
All the physical stuff aside, there is another huge component that I don't want to be overlooked. The emotional and mental well-being of those affected. I can say this with extreme confidence from the last year a half, from both my perspective and Kennedy's - MEDICAL PTSD IS REAL. For Kennedy, this manifests in needing to sit beside me every night on the couch. She has a hard time when she's home and I'm not, even if others are with her. For a long while, she had a hard time being away from home at all; thankfully her awesome friends and their parents helped get her over this hurdle. Doctor appointments are anxiety-producing because she's just waiting for the next piece of bad news (like the surgery she must have at the end of this month). She doesn't like to talk about any of it, hates reminders about what she's been through recently.
For me, it manifests in different ways. Depression, flashbacks, tears, panic attacks, nightmares. Living through it all was just survival. Thinking back and remembering provides a perspective that isn't always positive. Watching her fight her own PTSD demons breaks my heart. It doesn't help that I lost my four-legged therapist in the middle of all the chaos.
But if anything, we are survivors. We roll out of bed each day and live life. We declared 2017 our year, and although she already has a surgery on the books, we hope that it will be one that points us in the right direction. If nothing else, getting back underwater in February with our scuba angels was nothing but amazing for her. I truly think she finds peace 60 feet down. And the promise of even better diving on the horizon is helping her look ahead, instead of getting stuck on the here and now.
So yes, my heart has been jumbled. Words have been hard. Memories even harder. Life still isn't easy, although we're all hoping that really is light at the end of the tunnel that we're seeing.
Thursday, March 2, 2017
Wednesday, July 27, 2016
37%
Put yourself back in high school algebra class. You just took a test and are about to get your grade. There was no extra credit, so you know the highest possible grade is 100%. You sit there anxiously waiting for your test to be handed back to you. Mr. Hendershott (those from my hometown will appreciate this reference) stops in front of your desk and hands it back to you and you see in big red numbers at the top...37%. Your heart sinks. Your stomach knots. You felt that you did okay on it, that it wasn't that hard to get through. But you didn't even get half of the questions correct. You didn't even get a "high" F, not even close to passing with a D. Thirty-seven percent.
Now, remove yourself from Mr. Hendershott's class (I know friends, we all hated to see that class end) and place yourself in a doctor's office. And that 37% that is being thrown your way describes your child's lung function. You know, those two organs that are needed to keep you alive, the ones that breathe for you? Let's think that if each work at 50% to give you 100% lung function, she doesn't even have the equivalent of one working lung.
You are sitting in that doctor's office, listening to this. But you have hope. Because this low lung function could be a result of Chiari Malformation. So your child undergoes urgent brain surgery. Three months later, you are given the same number. So surgery for Chiari didn't help improve it any. But you have hope. Because this low lung function could be the result of scoliosis (which most likely worsened due to Chiari). So your child undergoes urgent spinal fusion.
And four months later, you are given the same number. And the hope is gone. You are told to be thankful that it has remained stable and not decreased any further. You are told that your new hope is that the spinal fusion was enough to stabilize the lung function for years to come. You are told that 37% is your new normal, a normal that you need to pray with all your might does not slip any further.
Your heart sinks. Your stomach knots.
For the last two weeks, since hearing the new normal, I've been trying to put myself into Kennedy's shoes. Lord knows I'm out of shape and get out of breath easily. But my lungs fully function. They didn't always though and I remember how tired I was when my asthma would flare. How much I hated that feeling of not breathing fully and completely. How often I just wanted to do nothing because my energy was drained. And I think about her with only 37% lung function. And Chiari on top of this. And recovering from 3 major surgeries in the last 9 months and an ongoing infection. I don't know how she does the stuff she does. I don't know how she functions. I honestly don't know.
And I'm learning how to function as the mom of a child with 37% lung function. How to decipher lazy vs. warn out. How to notice when she's struggling, when she's pushing too much. How to push her but not over-push her. How to let her learn this new normal on her own terms. How to help her come to terms with being tired, a lot. How to help her not to focus on what could be in the future. And I'm not gonna lie...it isn't easy. Every parent will say that one of the things they hate the most is seeing their child sick or struggling, and not being able to do anything about it. This is my everyday. But my lungs fully function, so I have the good end of it.
The saving grace to all of this is that exercise does not decrease lung function, it does not damage the lungs. So we're one step closer to getting her back to scuba diving, where we're pretty sure she is breathing better than she does on land.
We don't know what the future will bring. A 3D surgery to help expand her rib cage? An oxygen machine? A vent? A shorter life span? Absolutely nothing more than what we're doing now? No one knows. Only time will tell. And until then, we will not dwell on it. Well, maybe I will just a little. Because I'm the mom and that's my job. That and praying and hoping that 37% always stays 37%.
Now, remove yourself from Mr. Hendershott's class (I know friends, we all hated to see that class end) and place yourself in a doctor's office. And that 37% that is being thrown your way describes your child's lung function. You know, those two organs that are needed to keep you alive, the ones that breathe for you? Let's think that if each work at 50% to give you 100% lung function, she doesn't even have the equivalent of one working lung.
You are sitting in that doctor's office, listening to this. But you have hope. Because this low lung function could be a result of Chiari Malformation. So your child undergoes urgent brain surgery. Three months later, you are given the same number. So surgery for Chiari didn't help improve it any. But you have hope. Because this low lung function could be the result of scoliosis (which most likely worsened due to Chiari). So your child undergoes urgent spinal fusion.
And four months later, you are given the same number. And the hope is gone. You are told to be thankful that it has remained stable and not decreased any further. You are told that your new hope is that the spinal fusion was enough to stabilize the lung function for years to come. You are told that 37% is your new normal, a normal that you need to pray with all your might does not slip any further.
Your heart sinks. Your stomach knots.
For the last two weeks, since hearing the new normal, I've been trying to put myself into Kennedy's shoes. Lord knows I'm out of shape and get out of breath easily. But my lungs fully function. They didn't always though and I remember how tired I was when my asthma would flare. How much I hated that feeling of not breathing fully and completely. How often I just wanted to do nothing because my energy was drained. And I think about her with only 37% lung function. And Chiari on top of this. And recovering from 3 major surgeries in the last 9 months and an ongoing infection. I don't know how she does the stuff she does. I don't know how she functions. I honestly don't know.
And I'm learning how to function as the mom of a child with 37% lung function. How to decipher lazy vs. warn out. How to notice when she's struggling, when she's pushing too much. How to push her but not over-push her. How to let her learn this new normal on her own terms. How to help her come to terms with being tired, a lot. How to help her not to focus on what could be in the future. And I'm not gonna lie...it isn't easy. Every parent will say that one of the things they hate the most is seeing their child sick or struggling, and not being able to do anything about it. This is my everyday. But my lungs fully function, so I have the good end of it.
The saving grace to all of this is that exercise does not decrease lung function, it does not damage the lungs. So we're one step closer to getting her back to scuba diving, where we're pretty sure she is breathing better than she does on land.
We don't know what the future will bring. A 3D surgery to help expand her rib cage? An oxygen machine? A vent? A shorter life span? Absolutely nothing more than what we're doing now? No one knows. Only time will tell. And until then, we will not dwell on it. Well, maybe I will just a little. Because I'm the mom and that's my job. That and praying and hoping that 37% always stays 37%.
Thursday, June 9, 2016
Closing A Chapter...
As we say goodbye to the middle school years and look forward to a new milestone - high school - I can't help but to reflect back on this part of Kennedy's journey. I remember being so sick about her starting middle school...we had already lived those awful years with one child and I think we can all remember our own middle school years. Kids are mean, nasty, drama-filled...UGH. We had already dealt with a bully at elementary and I was so afraid that middle school was going to be hell for Kennedy. At orientation, the first time wearing her new ear out in public, it fell off when she turned her head toward a friend and as she stuffed it in my purse and went on her way to the events of the day, I went home and cried. I imagined it falling off constantly, her being made fun of it for it, someone pulling it off on purpose, maybe even stealing it for a mean joke. Little did I know that bullying and the social aspect of middle school was the last thing I had to worry about.
It helped that over half the kids she was entering with knew her or knew of her from elementary school. But Kennedy thrived. From Day 1. She proved me wrong and she truly shined throughout. She made new friends each year, she deepened relationships with her old friends, she stayed out of drama. I would hear kids I've never seen before greet her in the morning, bid her farewell in the afternoon, give her hugs (which I'm sure she just loved, the hugger that she is). I needed not to worry at all about her in this regard.
Nor did I need to worry about academics. Kennedy went through elementary school doing her homework without me telling her to, getting projects done on time and without help, being the model student without any help from me. Seriously, I was the parent who had no idea there was a math test or a presentation because she handled it on her own - by choice - and apparently did a damn good job at it. This continued this throughout middle school, as can be seen by her All As in 6th, 7th, and 8th Grades Award she received earlier this week. If ever there is one thing I'm thankful for in her life, it is that she is smart and doesn't struggle on this side of things. I know it could easily have been the opposite.
But good grief has the medical journey been a bitch in middle school. Sixth grade brought the flu, twice. She struggled with Type A in January/February and Type B in March/April. And Kennedy doesn't just get the flu. It comes with pneumonia and sinus infections and it lasts for weeks. Literally, weeks. She missed 20+ days of 6th grade. Seventh grade brought surgery, which we thought would be somewhat minor. Guess again. SMILE surgery stage 1 ended up being more major than we thought. And she pushed herself to go back to soon, which knocked her back a few rungs on the ladder. Then she woke up on January 1st at Disney with the flu, which knocked her out of school (and almost into the hospital) for more than 3 weeks with double pneumonia. With some other illnesses thrown in, she ended up missing 30+ days of seventh grade. Thank goodness for 504 Plans. And we won't even talk about the awful back brace that was introduced during the latter half of this year as her scoliosis was starting to destabilize again.
We were determined that 8th grade would be her year. HAHAHAHAHAHA! The universe sure set us straight, starting the first week of school. She went into it, fighting some headaches and getting extremely tired. We had just started seeing a chiropractor to improve some mobility issues and he took an x-ray the first week of school and brought Kennedy and I in to explain what we were seeing. And the bottom dropped out of my world. I didn't tell her, didn't mention a word. But I went home and cried. And then immediately sent a picture of the x-ray to her orthopedic surgeon and asked for his thoughts. He confirmed what I saw - the scoliosis had gotten soooo much worse in the past 4 months and her lung and heart were in jeopardy. Again. We were back to age 5 all over again, and that was a nightmare in and of itself. We knew to save her life, we would need to act fast. As he was not operating at that time, he sent us on to Duke. Magic was worked and we were seen right away. But the orthopedic surgeon knew that things weren't adding up and sent her on for more tests. Next came the devastating diagnosis of Chiari and Syrngomyelia, emergency brain surgery, a horrific recovery. We lost who Kennedy was for a good long while. In late January we were crushed again when we learned that the brain surgery did not help her 37% lung function, so her scoliosis was the fault instead of Chiari. So in March, came spinal fusion, nasty infection, a second clean-out surgery, IV antibiotics, and now oral for another year, which is when we'll decide if another surgery is required to remove the hardware from the fusion (which looks likely as of now). According to my count, she missed 72 days of 8th grade (school database count is in the mid-60s but we know now everyday was counted). That's over 40% of her 8th grade year. And the only positive thing I can say medically for this year is thank goodness she avoided the flu (which, with her lung function, could have easily killed her).
You know that I'm always waiting for the other shoe to drop. With Goldenhar, we've spent her whole life waiting. I think enough shoes dropped through middle school. Ironic for a child who literally only wears ONE pair of shoes until she needs a new pair.
To say I'm happy to bid farewell to middle school is an understatement. Although unlike some other parents, it isn't because middle school itself was a nightmare. It is a chapter we need to close. Maybe even burn.
But that's easier said than done, when my girl is still trying so hard to recover. To find her new normal. To learn to live with disorders that no one should have to. Disorders with no cures and no true relief. This past weekend, Kennedy talked her BFF into going on a ropes course with ziplining at the end. It was her attempt to convince Andrea that she wants to zipline with Kennedy on our cruise. She struggled; although admittedly so did Katie as it was difficult. She came her and joined us in the pool, only lying on a float. That's not my mermaid's MO in the pool. It reminded me of last summer, when her swimming activity raised red flags with me. By evening, she was sobbing and went to bed way before her normal schoolnight bedtime. It had just been too much for her. We've seen many days like this. Many tears. Many things just being too much.
So we close the middle school chapter. And we put the bookmark in and take a break this summer. We rest. We heal. Her mind, body, and especially her soul. And we pray that the next chapter, which we'll begin in August, is a much better chapter, a much healthier chapter, a much happier chapter, than this one has been.
It helped that over half the kids she was entering with knew her or knew of her from elementary school. But Kennedy thrived. From Day 1. She proved me wrong and she truly shined throughout. She made new friends each year, she deepened relationships with her old friends, she stayed out of drama. I would hear kids I've never seen before greet her in the morning, bid her farewell in the afternoon, give her hugs (which I'm sure she just loved, the hugger that she is). I needed not to worry at all about her in this regard.
Nor did I need to worry about academics. Kennedy went through elementary school doing her homework without me telling her to, getting projects done on time and without help, being the model student without any help from me. Seriously, I was the parent who had no idea there was a math test or a presentation because she handled it on her own - by choice - and apparently did a damn good job at it. This continued this throughout middle school, as can be seen by her All As in 6th, 7th, and 8th Grades Award she received earlier this week. If ever there is one thing I'm thankful for in her life, it is that she is smart and doesn't struggle on this side of things. I know it could easily have been the opposite.
But good grief has the medical journey been a bitch in middle school. Sixth grade brought the flu, twice. She struggled with Type A in January/February and Type B in March/April. And Kennedy doesn't just get the flu. It comes with pneumonia and sinus infections and it lasts for weeks. Literally, weeks. She missed 20+ days of 6th grade. Seventh grade brought surgery, which we thought would be somewhat minor. Guess again. SMILE surgery stage 1 ended up being more major than we thought. And she pushed herself to go back to soon, which knocked her back a few rungs on the ladder. Then she woke up on January 1st at Disney with the flu, which knocked her out of school (and almost into the hospital) for more than 3 weeks with double pneumonia. With some other illnesses thrown in, she ended up missing 30+ days of seventh grade. Thank goodness for 504 Plans. And we won't even talk about the awful back brace that was introduced during the latter half of this year as her scoliosis was starting to destabilize again.
We were determined that 8th grade would be her year. HAHAHAHAHAHA! The universe sure set us straight, starting the first week of school. She went into it, fighting some headaches and getting extremely tired. We had just started seeing a chiropractor to improve some mobility issues and he took an x-ray the first week of school and brought Kennedy and I in to explain what we were seeing. And the bottom dropped out of my world. I didn't tell her, didn't mention a word. But I went home and cried. And then immediately sent a picture of the x-ray to her orthopedic surgeon and asked for his thoughts. He confirmed what I saw - the scoliosis had gotten soooo much worse in the past 4 months and her lung and heart were in jeopardy. Again. We were back to age 5 all over again, and that was a nightmare in and of itself. We knew to save her life, we would need to act fast. As he was not operating at that time, he sent us on to Duke. Magic was worked and we were seen right away. But the orthopedic surgeon knew that things weren't adding up and sent her on for more tests. Next came the devastating diagnosis of Chiari and Syrngomyelia, emergency brain surgery, a horrific recovery. We lost who Kennedy was for a good long while. In late January we were crushed again when we learned that the brain surgery did not help her 37% lung function, so her scoliosis was the fault instead of Chiari. So in March, came spinal fusion, nasty infection, a second clean-out surgery, IV antibiotics, and now oral for another year, which is when we'll decide if another surgery is required to remove the hardware from the fusion (which looks likely as of now). According to my count, she missed 72 days of 8th grade (school database count is in the mid-60s but we know now everyday was counted). That's over 40% of her 8th grade year. And the only positive thing I can say medically for this year is thank goodness she avoided the flu (which, with her lung function, could have easily killed her).
You know that I'm always waiting for the other shoe to drop. With Goldenhar, we've spent her whole life waiting. I think enough shoes dropped through middle school. Ironic for a child who literally only wears ONE pair of shoes until she needs a new pair.
To say I'm happy to bid farewell to middle school is an understatement. Although unlike some other parents, it isn't because middle school itself was a nightmare. It is a chapter we need to close. Maybe even burn.
But that's easier said than done, when my girl is still trying so hard to recover. To find her new normal. To learn to live with disorders that no one should have to. Disorders with no cures and no true relief. This past weekend, Kennedy talked her BFF into going on a ropes course with ziplining at the end. It was her attempt to convince Andrea that she wants to zipline with Kennedy on our cruise. She struggled; although admittedly so did Katie as it was difficult. She came her and joined us in the pool, only lying on a float. That's not my mermaid's MO in the pool. It reminded me of last summer, when her swimming activity raised red flags with me. By evening, she was sobbing and went to bed way before her normal schoolnight bedtime. It had just been too much for her. We've seen many days like this. Many tears. Many things just being too much.
So we close the middle school chapter. And we put the bookmark in and take a break this summer. We rest. We heal. Her mind, body, and especially her soul. And we pray that the next chapter, which we'll begin in August, is a much better chapter, a much healthier chapter, a much happier chapter, than this one has been.
Wednesday, April 20, 2016
Scars
The scars. They get to me. Each scar represents a battle, maybe more than one. Each scar represents pain. Each scar represents the unfairness. Most people will never see most of them. But I see them all. On a constant basis, I am reminded of her battles. I can't imagine the silent reminders that they are to her daily.
Ninety-nine percent of the time I can look at them and keep on with life. And then that one time comes when I look and the scars knock the wind right out of me. Last night was one of those nights. I was changing the bandage on Kennedy's back as it was falling off. This time, the bottom layer of the bandage (that was protecting the actual incision) was loose and I got a good look at the incision. I lost my breath and tears forms immediately. Thankfully Kennedy was lying on her stomach and couldn't see my face, and thankfully I was able to pull it together till she got in the shower and I could let the tears flow.
Kennedy lost a good amount of skin during the last surgery, due to the infection. I honestly have no idea how they were able to sew her back up. She is pulled so tight, I have no idea how she moves without being in constant pain. Maybe she is, and just not admitting it. Or maybe she is and doesn't know it because she has lived most of her life in pain.
This scar ends one inch before her brain surgery scar begins. It is surrounded by other scars all over her back. One thing I realized last night was that almost every scar on her on her backside represents a life-saving surgery. Surgeries where there was no question. Surgeries that were urgent. Surgeries that were necessary. Surgeries that saved my baby's life. Inserting a titanium rod to stretch her rib cage, so her heart and her lung weren't being squeezed. Numerous rib cage stretching surgeries. Brain decompression to prevent paralysis and possibly worse. Spinal fusion to save her lungs. And although there is no scar, her T&A was considered life-saving as well.
And every scar not on her backside represents a surgery that improved my girl's quality of life. Her BAHA, which is her lifeline to the world. Chest scars in an effort to create an ear from her rib, twice. Scar tissue only remains from what should have been her own ear. Titanium bars to hold on a prosthetic ear. A mole that she hated removed. A nerve planted in her face to some day help with facial paralysis, completing her beautiful smile. And then there are the leg scars, where the facial nerve was removed (although on the back of her leg, this was quality, not life-saving).
Twenty-two times she has been scarred. Twenty-two different battles that she has fought, and won. Twenty-two reminders that life can be so unfair. Twenty-two scars that shape who she is.
They do not define her. They tell a story. They are a survivor's tale. They remind her of where she has been, but they do not dictate where she is going. They are beautiful. They are her.
Ninety-nine percent of the time I can look at them and keep on with life. And then that one time comes when I look and the scars knock the wind right out of me. Last night was one of those nights. I was changing the bandage on Kennedy's back as it was falling off. This time, the bottom layer of the bandage (that was protecting the actual incision) was loose and I got a good look at the incision. I lost my breath and tears forms immediately. Thankfully Kennedy was lying on her stomach and couldn't see my face, and thankfully I was able to pull it together till she got in the shower and I could let the tears flow.
Kennedy lost a good amount of skin during the last surgery, due to the infection. I honestly have no idea how they were able to sew her back up. She is pulled so tight, I have no idea how she moves without being in constant pain. Maybe she is, and just not admitting it. Or maybe she is and doesn't know it because she has lived most of her life in pain.
This scar ends one inch before her brain surgery scar begins. It is surrounded by other scars all over her back. One thing I realized last night was that almost every scar on her on her backside represents a life-saving surgery. Surgeries where there was no question. Surgeries that were urgent. Surgeries that were necessary. Surgeries that saved my baby's life. Inserting a titanium rod to stretch her rib cage, so her heart and her lung weren't being squeezed. Numerous rib cage stretching surgeries. Brain decompression to prevent paralysis and possibly worse. Spinal fusion to save her lungs. And although there is no scar, her T&A was considered life-saving as well.
And every scar not on her backside represents a surgery that improved my girl's quality of life. Her BAHA, which is her lifeline to the world. Chest scars in an effort to create an ear from her rib, twice. Scar tissue only remains from what should have been her own ear. Titanium bars to hold on a prosthetic ear. A mole that she hated removed. A nerve planted in her face to some day help with facial paralysis, completing her beautiful smile. And then there are the leg scars, where the facial nerve was removed (although on the back of her leg, this was quality, not life-saving).
Twenty-two times she has been scarred. Twenty-two different battles that she has fought, and won. Twenty-two reminders that life can be so unfair. Twenty-two scars that shape who she is.
They do not define her. They tell a story. They are a survivor's tale. They remind her of where she has been, but they do not dictate where she is going. They are beautiful. They are her.
Thursday, April 7, 2016
I HATE
Y'all know writing is my catharsis on this journey. I often times delete these posts, when I'm in this current state of mind, but I decided to share this time.
I FUCKING hate Goldenhar Syndrome. And everything that comes with it or has come as a cause from it. I hate Chiari Malformation. I hate scoliosis. I hate decreased lung function. I hate speech problems. I hate facial paralysis. I hate hearing aids (no I don't...I love them. I hate hearing loss). I hate missing ears. I hate pain. I hate surgeries. I hate hospitals. I hate. I HATE, HATE, HATE with everything in my fucking being.
And you know what? I'm allowed to. Because I spend 95% of my life being happy. Finding silver linings. Embracing laughter and the lines that come with it. But the other 5% - I'm allowed to fucking hate.
Almost fourteen years on this journey and my hate only intensifies. The fucking universe is unfair and why my child has to be one to suffer, I do not know. But I hate it. I will be the first to tell you that my faith waivers at times and has for 14 years. I do not believe that these things happen for a reason, I do not believe that this was God's purpose or plan, and I do not believe that if God brought you to it, he will bring you through it. Because no God would "bring" this to a newborn baby and only make it worse and worse as her life goes on. Do not say these things to me and for the love of an all Holy God, do not say them to Kennedy. I will never tell others not to believe these things themselves, but thankfully we have the freedom of religious choice in the country (at least for now...) and our spiritual lives are ones that Kennedy and I usually keep private (only those living in her house know Kennedy's feelings on it all). Don't get me wrong - we will take all of the prayers that we can get. Pray in your own way. We need it all, we will take it all. I know words like these are said with good intentions but you have not walked our shoes and sometimes things like this can only make things more difficult to deal with.
This baby girl has been through some major shit in her short life. Tomorrow will be her 22nd fucking surgery. This is her whatever hospitalization. She is so fucking sick of being the 1%, the one in a million. Right now she is pissed off at the world and beyond, and has every right to be. I am for her. And for all the kids who go through this shit and worse. When do we catch a fucking break? WHEN?? When does she get to be a teenager and not worry about hearing aid batteries dying at sleepovers or in school, about a prosthetic ear falling off in PE class, about a hole left in her head from Chiari brain surgery, about constant pain in her back about worrying whether she'll pass out from not being able to breathe when she rides her bike, about the possibility of never scuba diving again? WHEN?? Never, that's when.
And who knows what is next. Who fucking knows. Because we live every day waiting for the other fucking shoe to drop. Every fucking day. Like today. How many fucking shoes are there? Do we ever run out of dropping shoes? Nope, never. Not in her lifetime. Because now we have to worry about lung function and whether she'll one day have to live on a vent. Whether she'll hit her head just right and have irreversible brain damage from no skull protection. Whether she'll go to bed one night and the Chiari doesn't let her wake the next morning. EVERY FUCKING DAY FOR THE REST OF HER LIFE.
So I HATE. And I will HATE a little bit every fucking day for the rest of MY life.
But you know what? She is the strongest person I know. She is a hero. She is my inspiration. She is my strength. She soldiers on. She quietly hates while I'm fucking off the entire universe (I've tried to get her to try my way but she won't - go figure). She doesn't pity (okay, maybe for 30 minutes today). She tries to move on and forget all the shoes that have dropped. She tries to fit in. She tries to be as normal as possible. But read my post from last night - her essay. Read between the lines. You'll see the pain that she quietly deals with. The invisible pain.
The fucking invisible pain (I needed one more F bomb to close, I felt like).
I FUCKING hate Goldenhar Syndrome. And everything that comes with it or has come as a cause from it. I hate Chiari Malformation. I hate scoliosis. I hate decreased lung function. I hate speech problems. I hate facial paralysis. I hate hearing aids (no I don't...I love them. I hate hearing loss). I hate missing ears. I hate pain. I hate surgeries. I hate hospitals. I hate. I HATE, HATE, HATE with everything in my fucking being.
And you know what? I'm allowed to. Because I spend 95% of my life being happy. Finding silver linings. Embracing laughter and the lines that come with it. But the other 5% - I'm allowed to fucking hate.
Almost fourteen years on this journey and my hate only intensifies. The fucking universe is unfair and why my child has to be one to suffer, I do not know. But I hate it. I will be the first to tell you that my faith waivers at times and has for 14 years. I do not believe that these things happen for a reason, I do not believe that this was God's purpose or plan, and I do not believe that if God brought you to it, he will bring you through it. Because no God would "bring" this to a newborn baby and only make it worse and worse as her life goes on. Do not say these things to me and for the love of an all Holy God, do not say them to Kennedy. I will never tell others not to believe these things themselves, but thankfully we have the freedom of religious choice in the country (at least for now...) and our spiritual lives are ones that Kennedy and I usually keep private (only those living in her house know Kennedy's feelings on it all). Don't get me wrong - we will take all of the prayers that we can get. Pray in your own way. We need it all, we will take it all. I know words like these are said with good intentions but you have not walked our shoes and sometimes things like this can only make things more difficult to deal with.
This baby girl has been through some major shit in her short life. Tomorrow will be her 22nd fucking surgery. This is her whatever hospitalization. She is so fucking sick of being the 1%, the one in a million. Right now she is pissed off at the world and beyond, and has every right to be. I am for her. And for all the kids who go through this shit and worse. When do we catch a fucking break? WHEN?? When does she get to be a teenager and not worry about hearing aid batteries dying at sleepovers or in school, about a prosthetic ear falling off in PE class, about a hole left in her head from Chiari brain surgery, about constant pain in her back about worrying whether she'll pass out from not being able to breathe when she rides her bike, about the possibility of never scuba diving again? WHEN?? Never, that's when.
And who knows what is next. Who fucking knows. Because we live every day waiting for the other fucking shoe to drop. Every fucking day. Like today. How many fucking shoes are there? Do we ever run out of dropping shoes? Nope, never. Not in her lifetime. Because now we have to worry about lung function and whether she'll one day have to live on a vent. Whether she'll hit her head just right and have irreversible brain damage from no skull protection. Whether she'll go to bed one night and the Chiari doesn't let her wake the next morning. EVERY FUCKING DAY FOR THE REST OF HER LIFE.
So I HATE. And I will HATE a little bit every fucking day for the rest of MY life.
But you know what? She is the strongest person I know. She is a hero. She is my inspiration. She is my strength. She soldiers on. She quietly hates while I'm fucking off the entire universe (I've tried to get her to try my way but she won't - go figure). She doesn't pity (okay, maybe for 30 minutes today). She tries to move on and forget all the shoes that have dropped. She tries to fit in. She tries to be as normal as possible. But read my post from last night - her essay. Read between the lines. You'll see the pain that she quietly deals with. The invisible pain.
The fucking invisible pain (I needed one more F bomb to close, I felt like).
Wednesday, March 2, 2016
The Hardest Thing I've Ever Had to Do...
This isn't about Kennedy. But writing helps me. And I need help. I won't lie...I'm struggling.
Let me start with a firm statement as I don't want anyone to think otherwise. No, Chelsea was not my child and never would I compare it with losing a child. That almost happened to me once. It has happened to a couple of mamas who I love dearly. Watching them wake up each morning and face a new day, it amazes me the strength they find to do so. And you all know that this is my worst fear, which is once again bubbling up inside of me as we approach March 21st. Unless one experiences that, and I hope you never have to, one has no idea what that is even like. In no way am I saying or pretending that this compares.
But Chelsea was second to my girls (don't worry, Ryan accepted this fact years and years ago). Yes, she was a dog. But never was she ever "just a dog." And maybe you have to be a dog person to get it. Or maybe you had to know my relationship with Chelsea to get it. Or maybe you think I'm just crazy and don't get it. And that's okay too.
But I'm so overwhelmed with such sadness. A sadness that I feel in every bone, every muscle, every fiber of my being. An intense physical feeling to accompany the emotional feeling. Heartache may not really involve the heart, but my chest is heavy just the same. I (we) truly lost a family member, one that was so important to me and my daily life that brings me to tears just thinking about it.
I didn't want a puppy. Fifteen years ago, that sounded like a pain in the ass. Not to mention that I know I'm not good with the death of animals. Those shirts that say something like you can kill off any person in the movie, but please don't kill off the dog? That's me. I can't watch an animal dying, I can't read about an animal dying. I can't watch those stupid 10 minute commercials that the SPCA or whoever show on tv. I had to quit donating to the SPCA because even though I wrote multiple times and asked them to quit sending me the letters with the sad pet stories and pictures, they continued to do so. Heck, I even cried when Kennedy's hamster died (and we weren't on good terms with each other). When I was about ten, I watched a dog die at the vet. It wasn't my dog, but it traumatized me. To the point that I didn't step foot into a vet again until Chelsea was about 10 or 11, and I no longer trusted Ryan to get the information I needed about her health. I just don't like the thought of animals dying. Disclaimer: I have never watched a real person die but I'm sure it is no easier and most likely harder.
But I lost the puppy decision. Katie picked "her" puppy out. She was so stinking cute but I was happy for her to be Katie's puppy. Then I was sick. And Katie put her in bed with me to take a nap. And truly, that was all she wrote. She slept curled up to me every single night (minus some vacations) for the next 15 years. In the last few weeks, she had to sleep with her face on mine. She had to touch me, feel me breathing on her. I haven't slept since we said goodbye. Sharing your bed with someone for 15 years then all of the sudden that someone is gone...that's brutal.
Life wasn't all roses with her. She was little and got hurt a lot - people stepping on her, jumping off of furniture. She never learned the art of behaving during dinner. Until she lost her hearing, she barked. A lot. She was spoiled and couldn't handle being left alone overnight. Nor could she handle staying in a kennel so we had to constantly find house/dog sitters when we were leaving town. And good gravy, was she stubborn.
And then dementia hit, and that brought all kinds of issues - not sleeping well, getting lost in the house and yard, forgetting where to go potty, increasing episodes of dementia freak outs where she didn't know who I was, needing me to hold her, not being able to be left alone, and the list goes on. Although I have known people with dementia, I've been lucky enough that no one that I'm super close with has had to suffer the disease. But I lived with it daily and I can tell you that some days were hell. There were a number of nights where I sat on my bedroom floor crying at 3am, as she ran full speed into walls and furniture, trying to bite me if I tried to pick her up, not recognizing who I was. One night during the last week, I was sleeping with my back to her. When she couldn't find my face to lay on, she went into freak out mode, flying off the bed (she always waited for someone to put her down), she spent an hour running all over my room and bathroom, finally burying herself in the back of my closet before she finally recognized me and let me pick her up. For a year, we played the dementia game. Human meds helped for about 9 months, and then they could no longer slow the progression.
But it was time. We all knew it was time (at least those who had spent time with her recently). The night before, it was a difficult night. Carrying her up to bed one last time (she had not been able to walk up the stairs for a few years). One last night to snuggle (I didn't sleep). And I cried. Usually she didn't want to share my pillow until about midnight. But she climbed up on my pillow right away and put her face on mine. Then she spent about thirty minutes just kissing me. I like to think she knew, and she was telling me that it was okay. That she was ready, even if I wasn't.
Sadly, my amazing vet was out of town the weekend that Katie could be here, but we were able to find another vet who helped pets cross the Rainbow Bridge at home. Chelsea hated the vet and there was no way I could do this if that's where she had to say goodbye. So Saturday night, with the help of Peaceful Passings, we said goodbye. She gave all of us a kiss before her sedative. Then, I sat in my spot on the couch, the one she couldn't settle down until I was in, I held her in her favorite blankie. I snuggled her, I talked to her, I kissed her. She was surrounded by all of us as she took her last breaths. It was raw, it was emotional, there were many tears. But it was peaceful. And at least she was at peace, something she had not experienced truly for over a year.
Although I continue to second-guess my decision to give her peace, about 20 times a day right now, I probably held on longer than I should have. But she was such a big part of my life. Yes, she was my sleepmate and my pillow-sharer. But she was also my therapist. She was my blood pressure reducer (serious fact). She was my tear-catcher and my secret keeper (and I mean secrets that no one else on this earth knows). She helped me through some of the darkest days of my life. And she did the same for Kennedy. She literally and truly was my best friend. The only one who loved me unconditionally when I was unlovable. Coming home to her wagging tail and puppy kisses, that was happiness even on bad days. And suddenly all of that is gone.
Coming home from work on Monday, it was more than I could handle. So Kennedy and I sat in the car in the garage for awhile, while I cried and she comforted me. And finally we were brave enough to do it. No puppy on the couch. No kisses, no wagging tails. No having to find her a snack and take her out. No more welcoming committee, even though lately it was more just a look of gratitude that we came home and not so much welcoming. But still.
Kennedy wants a new dog now. Katie isn't sure how long I can make it without puppy love, knowing what a dog person I am. But for now, I'm mending a broken heart. I'm just so sad. I can't think about having to say goodbye again. And I'm waiting for Chelsea to send me the exact dog who needs me, who is in great need of the love that Chelsea knew.
I know it will get easier. And I'm sure one day I'm going to wake up and decide today is the day for a new pup. And hell, that could be tomorrow for all we know. But for now, I'm struggling. My heart is broken. I may be crazy, you may think she was just a dog. But I know better. She was my soulmate. And saying goodbye was the hardest thing I've ever had to do...
Let me start with a firm statement as I don't want anyone to think otherwise. No, Chelsea was not my child and never would I compare it with losing a child. That almost happened to me once. It has happened to a couple of mamas who I love dearly. Watching them wake up each morning and face a new day, it amazes me the strength they find to do so. And you all know that this is my worst fear, which is once again bubbling up inside of me as we approach March 21st. Unless one experiences that, and I hope you never have to, one has no idea what that is even like. In no way am I saying or pretending that this compares.
But Chelsea was second to my girls (don't worry, Ryan accepted this fact years and years ago). Yes, she was a dog. But never was she ever "just a dog." And maybe you have to be a dog person to get it. Or maybe you had to know my relationship with Chelsea to get it. Or maybe you think I'm just crazy and don't get it. And that's okay too.
But I'm so overwhelmed with such sadness. A sadness that I feel in every bone, every muscle, every fiber of my being. An intense physical feeling to accompany the emotional feeling. Heartache may not really involve the heart, but my chest is heavy just the same. I (we) truly lost a family member, one that was so important to me and my daily life that brings me to tears just thinking about it.
I didn't want a puppy. Fifteen years ago, that sounded like a pain in the ass. Not to mention that I know I'm not good with the death of animals. Those shirts that say something like you can kill off any person in the movie, but please don't kill off the dog? That's me. I can't watch an animal dying, I can't read about an animal dying. I can't watch those stupid 10 minute commercials that the SPCA or whoever show on tv. I had to quit donating to the SPCA because even though I wrote multiple times and asked them to quit sending me the letters with the sad pet stories and pictures, they continued to do so. Heck, I even cried when Kennedy's hamster died (and we weren't on good terms with each other). When I was about ten, I watched a dog die at the vet. It wasn't my dog, but it traumatized me. To the point that I didn't step foot into a vet again until Chelsea was about 10 or 11, and I no longer trusted Ryan to get the information I needed about her health. I just don't like the thought of animals dying. Disclaimer: I have never watched a real person die but I'm sure it is no easier and most likely harder.
But I lost the puppy decision. Katie picked "her" puppy out. She was so stinking cute but I was happy for her to be Katie's puppy. Then I was sick. And Katie put her in bed with me to take a nap. And truly, that was all she wrote. She slept curled up to me every single night (minus some vacations) for the next 15 years. In the last few weeks, she had to sleep with her face on mine. She had to touch me, feel me breathing on her. I haven't slept since we said goodbye. Sharing your bed with someone for 15 years then all of the sudden that someone is gone...that's brutal.
Life wasn't all roses with her. She was little and got hurt a lot - people stepping on her, jumping off of furniture. She never learned the art of behaving during dinner. Until she lost her hearing, she barked. A lot. She was spoiled and couldn't handle being left alone overnight. Nor could she handle staying in a kennel so we had to constantly find house/dog sitters when we were leaving town. And good gravy, was she stubborn.
And then dementia hit, and that brought all kinds of issues - not sleeping well, getting lost in the house and yard, forgetting where to go potty, increasing episodes of dementia freak outs where she didn't know who I was, needing me to hold her, not being able to be left alone, and the list goes on. Although I have known people with dementia, I've been lucky enough that no one that I'm super close with has had to suffer the disease. But I lived with it daily and I can tell you that some days were hell. There were a number of nights where I sat on my bedroom floor crying at 3am, as she ran full speed into walls and furniture, trying to bite me if I tried to pick her up, not recognizing who I was. One night during the last week, I was sleeping with my back to her. When she couldn't find my face to lay on, she went into freak out mode, flying off the bed (she always waited for someone to put her down), she spent an hour running all over my room and bathroom, finally burying herself in the back of my closet before she finally recognized me and let me pick her up. For a year, we played the dementia game. Human meds helped for about 9 months, and then they could no longer slow the progression.
But it was time. We all knew it was time (at least those who had spent time with her recently). The night before, it was a difficult night. Carrying her up to bed one last time (she had not been able to walk up the stairs for a few years). One last night to snuggle (I didn't sleep). And I cried. Usually she didn't want to share my pillow until about midnight. But she climbed up on my pillow right away and put her face on mine. Then she spent about thirty minutes just kissing me. I like to think she knew, and she was telling me that it was okay. That she was ready, even if I wasn't.
Sadly, my amazing vet was out of town the weekend that Katie could be here, but we were able to find another vet who helped pets cross the Rainbow Bridge at home. Chelsea hated the vet and there was no way I could do this if that's where she had to say goodbye. So Saturday night, with the help of Peaceful Passings, we said goodbye. She gave all of us a kiss before her sedative. Then, I sat in my spot on the couch, the one she couldn't settle down until I was in, I held her in her favorite blankie. I snuggled her, I talked to her, I kissed her. She was surrounded by all of us as she took her last breaths. It was raw, it was emotional, there were many tears. But it was peaceful. And at least she was at peace, something she had not experienced truly for over a year.
Although I continue to second-guess my decision to give her peace, about 20 times a day right now, I probably held on longer than I should have. But she was such a big part of my life. Yes, she was my sleepmate and my pillow-sharer. But she was also my therapist. She was my blood pressure reducer (serious fact). She was my tear-catcher and my secret keeper (and I mean secrets that no one else on this earth knows). She helped me through some of the darkest days of my life. And she did the same for Kennedy. She literally and truly was my best friend. The only one who loved me unconditionally when I was unlovable. Coming home to her wagging tail and puppy kisses, that was happiness even on bad days. And suddenly all of that is gone.
Coming home from work on Monday, it was more than I could handle. So Kennedy and I sat in the car in the garage for awhile, while I cried and she comforted me. And finally we were brave enough to do it. No puppy on the couch. No kisses, no wagging tails. No having to find her a snack and take her out. No more welcoming committee, even though lately it was more just a look of gratitude that we came home and not so much welcoming. But still.
Kennedy wants a new dog now. Katie isn't sure how long I can make it without puppy love, knowing what a dog person I am. But for now, I'm mending a broken heart. I'm just so sad. I can't think about having to say goodbye again. And I'm waiting for Chelsea to send me the exact dog who needs me, who is in great need of the love that Chelsea knew.
I know it will get easier. And I'm sure one day I'm going to wake up and decide today is the day for a new pup. And hell, that could be tomorrow for all we know. But for now, I'm struggling. My heart is broken. I may be crazy, you may think she was just a dog. But I know better. She was my soulmate. And saying goodbye was the hardest thing I've ever had to do...
Tuesday, January 26, 2016
The Question No One is Asking, Including Myself
It's kind of like the elephant in the room for me. I'm glad no one has asked me. I myself haven't truly asked it. But it's there, lurking, raising its trunk every so often, asking for a peanut.
So let's go ahead and write it out loud...with the latest doctor appointment, what does Kennedy's future look like? What does this mean for her long-term health? Does it affect her life span? Here's the thing - no one knows. And I wouldn't believe anyone who tried to tell us otherwise. We know the possibilities - CPAP, BIPAP, portable oxygen, a portable ventilator. Will it come to any of this? Maybe. When? Who knows. Only time will tell. We know she has Chiari and we know she has Restrictive Lung Disease, either of which could lead to tragedy. There is no way to sugarcoat that.
As most of you know or have read in the past, I've watched her die. That day is etched into my mind forever, the sounds, the sights. Birthdays are celebrated to the extreme and we do all we can to make memories. And we will continue to do so. When Kennedy is 95 and blowing out the candles on her cake with no help of oxygen (she is stubborn, ya know), I want her to have nothing but good memories of growing up. To know that her parents tried to make the most of her childhood, her life. To realize that her diseases may have been front and center at times but we did all we could to minimize them in the big picture.
So we live life. We continue to make memories. We work to get her back underwater before the day comes when she just can't do it anymore. We encourage her to chase her dreams and help her every chance we get. We hope for a long, mostly pain-free, somewhat-healthy life.
And every once in awhile, I throw a peanut to the elephant in the room, hoping he'll be satisfied enough to slink back into the shadows...
So let's go ahead and write it out loud...with the latest doctor appointment, what does Kennedy's future look like? What does this mean for her long-term health? Does it affect her life span? Here's the thing - no one knows. And I wouldn't believe anyone who tried to tell us otherwise. We know the possibilities - CPAP, BIPAP, portable oxygen, a portable ventilator. Will it come to any of this? Maybe. When? Who knows. Only time will tell. We know she has Chiari and we know she has Restrictive Lung Disease, either of which could lead to tragedy. There is no way to sugarcoat that.
As most of you know or have read in the past, I've watched her die. That day is etched into my mind forever, the sounds, the sights. Birthdays are celebrated to the extreme and we do all we can to make memories. And we will continue to do so. When Kennedy is 95 and blowing out the candles on her cake with no help of oxygen (she is stubborn, ya know), I want her to have nothing but good memories of growing up. To know that her parents tried to make the most of her childhood, her life. To realize that her diseases may have been front and center at times but we did all we could to minimize them in the big picture.
So we live life. We continue to make memories. We work to get her back underwater before the day comes when she just can't do it anymore. We encourage her to chase her dreams and help her every chance we get. We hope for a long, mostly pain-free, somewhat-healthy life.
And every once in awhile, I throw a peanut to the elephant in the room, hoping he'll be satisfied enough to slink back into the shadows...
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