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.