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.

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).

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...

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...

The Struggles of a Happy Person

I consider myself a happy person, who tries to live a happy life. This hasn't always been the case but I've worked hard to get to this point. This journey has taught me not to worry what others think of me (although I'll admit I've been struggling with the weight I've gained the last few years with help from some needed medications), to remove negativity and negative people from my life, to accept life for what it is. I've learned to roll with the punches, to dance in the rain instead of waiting for the storm to pass, to just let it go (which I can't type without hearing my nieces sing it with their 4 year old flare, which helps a lot). Happiness is a choice, and I choose to be happy.

But with this, I've learned what the biggest struggle is for happy people, or at least my biggest struggle....being unhappy. (not to be confused with depression) My happy life was rocked back in August with a simple x-ray. It was rocked even more with an MRI. It was rocked even more with a brain surgery and difficult recovery. None of it mine, but I could have handled it all better if it were. I lived for months in an unhappy foggy world. It consumed my world, and made the happy shrink off into the distance. No matter what I tried to choose...happiness was just nowhere to be found. So I took the advice of C.S. Lewis and let go of the monkey bars in order to move forward.

  

The problem with that is the landing hurts, which makes me just as unhappy. So yeah, she was diagnosed with a brain disease, had surgery so she wouldn't be paralyzed, and will live with this disease and its symptoms forever. So what, accept it and move on. Except that she has lung function tests in two weeks that will tell us that she still can't breathe. Which I already know because I hear her after any kind of activity, I hear her when she sleeps, I see her chest moving shallow and rapidly as she sits on the couch doing nothing. And once those lung functions tell us what I already know, then we will still have questions about why she can't breathe. Is it from the Chiari? And if so, is it slowly improving? Will it? When? Is the syrinx in her spinal column causing it? It the syrinx decreasing any? We know as of last MRI that it wasn't, but it had not increased in size either. Will the syrinx decrease like it should? And if so, when? And will that improve breathing? Or is the breathing from her scoliosis? And the Restrictive Lung Disease? And will she need spinal fusion in the very near future to fix this? And when will that be? Another major surgery, with a long and difficult recovery. Will spinal fusion fix it? Will she ever breathe normally again? Is the lack of oxygen hurting her in any way? Can we fix all of this before she gets the flu which sends her spiraling down when her lungs are normal? Is she going to end up on a BiPap? A ventilator? And if so, how soon? Will she ever scuba again, her newfound passion? (this last one is a question we're pretending isn't even a question...we're assuming she will in good time...so assume with us)

And how does one plan life without these answers? Will she be able to go on her DC field trip in March? Will she be able to go on a spring break cruise if I give in to that request? Will she be able to go to Katie's graduation in May? Will she be able to vacation this summer? Will she be able to start high school in the fall with no issues? I'm a planner. And although I can roll with life's punches, I also need to have a little control. I have none.

The weight of the world is on my chest. Again. Add in that at some point in the near future I'm going to have to decide when my furbaby's dementia outweighs her happiness, and the weight gets heavier. And no matter what I try to choose, happiness eludes me. And I don't like to be unhappy. It isn't me, I don't feel right. But I don't know how to fix it either. I don't know where my happiness is hiding...it is the world's best hide-and-seek player. I don't know when it will decide to reveal itself. And I don't know how to adjust to the unhappiness. 

And I know I'm being selfish. Because if I feel like this, how do you think she feels? Her weight is just as heavy (and we know she needs no extra weight on her chest!). And she doesn't feel like herself, she doesn't feel right. 

So we live day by day. And as much as we would love to take everyone's advice and not dwell on the unknowns, that just isn't an option at this point. Because the unknown is not just about finding happiness. It is her life. 

Dear 2015, You Can Kiss My...

On January 1, 2015, Kennedy woke up at Disney World with influenza, Type A. We spent that morning in a strange urgent care clinic, checking her lungs and obtaining a prescription for Tamiflu. She spent her last two days at Disney World in a wheelchair, insisting on making the most of our family vacation but too weak and tired to do it on her own. That flu turned into double pneumonia, with both lungs taking a long time to heal.

The thing is, I knew. Before she even woke up that morning, she was moaning in her sleep which is a sign of fever for her. I knew it was a bad omen...ushering in the year with a major illness. I knew it was an omen of what the rest of the year was going to be. I tried to ignore it. Afterall, we were in the most magical place on earth. But I knew. 

And sure enough, it didn't stop there. The aftermath of the flu took almost eight weeks to recover from. And right on top of that, we learned the disappointing news that her scoliosis was worsening and she would need a brace to try and stabilize things. Ah, the brace. From the moment the words were out of the doctor's mouth to the fitting appointments to the nights in that torture device. So many tears were shed. Every morning she would wake up in pain and I knew that wasn't right. The doctor kept encouraging her to wear it more, wear it longer at night. That she would get used to it and the pain would stop. But that didn't happen. She got a lot of passes on wearing it over the summer and those were the mornings she would wake up not in pain. 

If anything, I can say that it was a great summer. The beach, scuba diving in Florida, Greece. But as the summer went on, it was more than just the pain from the brace that we were seeing. It was shortness of breath. It was tiring easily. It was fatigue. It was watching her put her hand to her chest. It was seeing her sit on the pool steps while her friends were out swimming in the deep end. It was the quietness, the not wanting to talk or do anything. But I still wasn't sure what was going on. And I still wasn't putting all the pieces together. 

So...I decided to follow her doctor's advice and see a chiropractor to see if he could help with the back pain from the brace and just some range of motion things. He took x-rays to see what he could move and what he couldn't. As he was showing Kennedy the x-rays, the alarms went off in my head. I kept it quiet till I got home and then immediately emailed her doctor. We went back and forth and then I went in for a conference with him. And from there:

He recommended spinal surgery but isn't doing surgeries so sent her to Duke --> Duke ortho thought her symptoms were a little off and sent her to pulmonary before deciding on spinal fusion --> pulmonary discovered her lung function was at 36% and diagnosed her with Restrictive Lung Disease --> both ortho and pulmonary decided she needed an MRI of her brain and spine --> Chiari Malformation and Syringomyelia were diagnosed --> brain decompression surgery was performed to prevent paralysis and permanent damage --> recovery from brain surgery was hell --> and now we're ushering 2015 out with a headache that won't go away, along with some other Chiari symptoms. 

To put it mildly, 2015 SUCKED in Kennedy's world of health. It is not what we had in mind when we cheered at the stroke of midnight last New Year's with Mickey Mouse and all our family. We are not sad to see it go. Not at all.

But, I'm not all that ready or excited to usher in 2016 either. We will be ringing in the New Year in California, which we hope is a great time and the plane ride is not a trigger for any Chiari symptoms. But as soon as we come back, we head straight in for repeat lung function tests. And maybe I should be hopeful that the decompression surgery was a positive thing for Kennedy's lung function. But I'm not. Because I hear her breathing. And I hear her struggling. And I know she's still in trouble. 

After lung function tests, it will then be a matter of figuring out if 1) it could be from Chiari and that the syrinx hasn't fixed itself. And if that's the case, what do we do/how do we fix it. Or 2) if it is from the Restrictive Lung Disease and spinal fusion is necessary soon. I can assure you that none of us are ready for another MAJOR surgery, least of all Kennedy. She just wants to be a normal teenager (oxymoron?). 

So as we prepare to tell 2015 to kiss our a$$, we prepare for 2016 to kick us in ours. Hope for the best, prepare for the worst. And keep fighting daily. She is my fighter. She is my strength. 

Grief is REAL

Believe it or not, I'm a pretty private person. And Kennedy even more so. Which is kind of ironic seeing that we share so much (but trust me, not all) about this journey. In the end, writing helps me. Removing thoughts from my head and putting them elsewhere; a blog in this instance. But I also share what I do in hopes that it helps others, or inspires others, or lets others know they aren't the only ones feeling the way they do or facing what they are facing.

Sometimes things come clearly to me, an epiphany of sorts. And today's epiphany - as I'm sitting here literally trying to figure out what is wrong with me - is that the stages of grief that they talk about are indeed real. And that it is okay to grieve in situations other than death, such as a medical diagnosis. A couple of weeks ago, someone casually said in a conversation that thank goodness it wasn't brain cancer (and she wasn't the first one). Yes, I'm thankful for that. Truly thankful. We lost an angel friend just a few months ago due to brain cancer and in the couple of years that we had the honor to love him here on earth, we saw what that fight is like. No child deserves such a diagnosis. And I hope we never hear those words.

But what should be understood is that it is okay to grieve over any diagnosis that means that life will change from what you have known, or what you anticipated for the future. Grieving isn't just reserved for certain diagnoses. Is my child dying? I certainly hope not (although it could happen at anytime whether it is Chiari-related (it does happen) or not...we're never promised tomorrow). Does my child have to learn a new norm, one that comes with lifelong pain and issues? Absolutely. And it is okay to grieve this. I know this because I've been here before. This isn't our first devastating diagnosis. But sometimes a reminder is needed.

Denial: I was in shock with the diagnosis. Scoliosis is what we thought we were dealing with, not her brain. I was numb. I did what I had to do to get through each day, and more importantly to get Kennedy through each day. Leading up to surgery. Surgery day. Recovery. There is a grace in this stage...nature's way of letting in only as much as our soul can handle. And as we start to let in more and more, we start to begin the healing process.

Anger: Once I knew that Kennedy was going to be okay, I was just pissed off. Once she was able to eat, able to communicate effectively again, able to go through a day without tears, I felt it was okay to just be mad. At everything and everyone. I mean, for the love of the universe, didn't she already have enough she was dealing with? Did she really need something else? I think I'm completely out of this stage now, but it took a lot out of me to be so angry. It was exhausting and I hated it. I hated to be hating. It is not me. Luckily, I was able to leave my anger in my happy place, to roll out with the tide, to be broken apart by the crashing waves. I hope my anger stays there, is broken apart enough that it doesn't come back to haunt me.

Bargaining: I am still in and out of this stage; the latest being due to the scare of possible meningitis due to the hole that appeared in her surgery site. To be honest, I've been bargaining since the pregnancy test said positive and I felt in my heart that something wasn't right. And I will bargain as many times as I need to in order for my girl to be okay, to have a good life. Whether it works or not - and obviously it isn't working great lately - it is in our nature to bargain with someone, or with God, or with the Universe, or with Pocahontas if the reason fits.

Depression: And this is where my epiphany started today. As yet another morning dawned when it was hard to wake up, hard to get out of bed. Another day when I decided I could not fathom showering, dressing, and going into the office where I had to see people. I've been so damn tired lately. And my body just hurts. And I have no energy. And I don't want to move. I was sincerely starting to think something was wrong with me. Then it hit me...I've reached the depression stage. I'm sad. I'm sad that Kennedy had to receive another diagnosis. I'm sad that Kennedy had to have brain surgery and the tough recovery this has been. I'm sad that she will have to suffer from this disease and its effects for the rest of her life. I'm sad that this disease is still so unknown. I am sad that this may or may not fix her breathing issues and we may need to jump right into another surgery. I am just sad. And living in a fog. I know that this kind of depression is not mental illness. I know that this kind of depression can't be rushed. I know that this kind of depression is not something that you can just snap out of. It is a necessary step to get where I need to be.

Acceptance: Obviously, this is what I'm working toward. Accepting is not saying that I'm okay with it. I never will be okay with it. It is knowing that this is what it is and we must go on the best we know how. It is learning to live with our new norm. It is learning to live with the new diagnosis without letting it control lives, without worrying about the what-ifs unless they happen. Our goal for the acceptance stage is to live again, not just to survive.

Although I've chosen to share my grieving process, Kennedy's grieving process remains private. A lot of it remains private from even myself, and that's okay. We all deal with grief differently. But the bottom line is that once we're ready, we will come to acceptance and move on. We will live again, not just survive. It's what we do, afterall.