We are struggling. Who knew that brain surgery, even with the 36% lung function complication, was going to be the easy part.
It feels like we're starting over. Starting from scratch. When Kennedy was born, we lived in a fog. We scheduled many appointments, met many different kind of doctors, researched and learned everything we could about Goldenhar. We watched and worried about everything. Is she going to live? Is her heart affected? Does her one kidney work? Can she hear? Will she speak? Will she meet milestones and if so, will it be in the normal range? Will she have learning problems? We learned what Goldenhar meant in general terms. We learned what best case scenario meant, as well as worst case scenario. And I had never felt so alone in my entire life.
But we learned. And whether we wanted to or not, we became experts. We knew what we were dealing with on a daily basis, but we also knew that anything could pop up at anytime. And it did. All the damn time. But we knew how to handle it. We knew where to get the help we needed. We knew how to get through it, or adapt to it. We knew. It is our life.
And now here we are back at Ground Zero. But it's Ground Zero plus Goldenhar. Which is even more complicated. And even harder to navigate.
Chiari Malformation I. Those were the words that changed our life yet again. Those are the words that took us all the way back to Start. One thing that was so hard about this is that is happened so fast. We went from chiropractor to orthopedic surgeon to pulmonologist to MRI to neurosurgeon to surgery. We had ten days between the neurosurgeon's official diagnosis and surgery, and that was only because he was out of town the week in between. With her chiari came syringomyelia, pockets of spinal fluid (CSF) in her spinal column. She has one large syrinx and several smaller syringes throughout her spinal column. Because of these, and because of her gait and other neuro tests, surgery was considered urgent in order to prevent permanent damage and paralysis.
There wasn't a lot of time to digest all of this before we were thrown into brain surgery. There wasn't a lot of time to research the best neurosurgeon. There wasn't a lot of time to get a second opinion. There just wasn't time to absorb all of this before action had to be taken. And that has thrown me for a loop.
So here we are again. Back at Ground Zero. And similar to Goldenhar, this Ground Zero sucks. There is not a lot of information to be found. It means something different for every single patient. There are a multitude of doctors that have never heard of it. And if they have heard of it, most can't pronounce it correctly (KEY - R - EE) and have no idea what it entails or how to treat it. So once again, we're starting over. We're learning what we can. We're seeing how it affects Kennedy. We're learning how to get through it. We're learning what doctors will deal with what issue. And again, I'm feeling pretty damn alone.
Like Goldenhar, this is a lifelong battle that Kennedy will have to wage. There is no magic cure, there is very little research being done so no cure is in the near future. Surgery prevented damage that would have been detrimental, but so far has caused more issues with Kennedy than she had or could handle. That's hard to swallow but not unheard of. Recovery from decompression surgery can take a year or longer to get to her new normal. And we have no idea what her new normal will entail. Chiari is not considered to be fatal, but it can be. She now has a part of her brain with no bone to protect it. Luckily as of right now, she does now have Chiari-related sleep apnea. But that can always change. And at any point in time, another decompression surgery could be necessary. In addition, there are other conditions that often go along with Chiari. So far, those don't seem to be in play but again, that can always change. Like Goldenhar, we have to always be ready for the other shoe to drop.
The thing is, I could take all of this much easier if it were me. Or even if it were Ryan. I'd trade with her in a second. I would take cancer, MS, or any other detrimental diagnosis if it meant that Kennedy didn't have to deal with this for the rest of her life. I've watched her the past 13 years. I've watched her go through 20 surgeries now, too many major illnesses to count. I've watched her die and be brought back to life and I watched her almost die a second time. I've watched her fight her way back and learn how to eat, walk, and talk again. I've watched her suffer chronic back pain. I've watched her learn to adapt to so many new problems. I've watched her miss out on team sports. I've watched her be stared at and whispered about. Every single moment of watching has been nothing but heartbreaking, although more awe-inspiring than one could ever imagine. But now to have to watch her on this new journey, this new diagnosis, this new Ground Zero. This new Ground Zero plus her already established Goldenhar. I fucking hate them both.
I'm so filled with anger at all of this. No one promised that life was fair but for the love of mac and cheese...this too? It isn't an easy illness. Many chiarians qualify for disability as they age. Some will lose their battle much too young. Others will suffer through it the best they can. The lucky ones will have few to no symptoms. Only time will tell Kennedy's new normal.
And Kennedy? She shared with me this week in a note her feelings about this. It was heartbreaking, gut wrenching. It made me cry. It made me sick. I won't share...her feelings are private. Sometimes too private but that's how she copes. But this little girl, because she's still little, who never complains, she is struggling too.
What we don't need is negativity. Or unsolicited advice. Or to hear the words that it will be okay, or that she is strong and will get through this. Or even pity. We just need love. And understanding. Understanding that just because she has surgery and will hopefully recover from that, this battle has only just begun. Our lives have been changed forever, once again, by a diagnosis. If you've never had this happen with your child, please know how lucky you are. I hope you never do. If you have, then you know how hard it is, how different it is than a diagnosis of a spouse, a parent, or yourself. The heartache it brings as a parent, not being able to do anything about it. Not being able to take away the pain.
The support we have received has been amazing. We've had dinners, desserts, gifts delivered. Sincere offers to help in any way people can. Not to mention all the check-ins, prayers, and positive vibes being sent our way. We truly appreciate everything that is being done. Kennedy and I are both mentally and physically exhausted. A card in the mail or dinner at our door has helped tremendously...more than you can imagine. A text or message to either of us to say hey, how are you. Don't believe either of us if we say okay. Because it isn't true. We are struggling.
UPDATE on KENNEDY: She is on a strong steroid taper again, in hopes of helping her headache. She has had her headache for three weeks now with no relief. With the steroids, it is down to a 2/3 on a 10 point scale. Her 2/3 is like my 5/6, due to her high pain tolerance. Headaches are worse when she looks down or tries to focus so catching up on homework has been tough. She can only take Tylenol, no ibuprofen, and Tylenol is just not touching it. She is fighting insomnia, which is frustrating for anyone let alone a 13 year old child who usually sleeps like a rock. Even with valium, sleep eludes her. She still has back/hip/leg pain and her gait is off for which we're seeing her orthopedic surgeon on Thursday. She still isn't in school but we're going to try a couple of classes this week if we can keep the headache down to a lower number. Thankfully, the nausea and vomiting are gone for now. What we don't know is what this has done learning-wise. We hope she can focus, learn, and remember things like she did prior to surgery. If not, that will be another huge blow. We also don't know if this has helped with lung function or not and won't till January. Her syrinx is no better, which we knew it wouldn't be for months post surgery, but it is no worse either so that's a relief. It is still day by day as she struggles with the physical and we both struggle with the emotional and mental toll it is all taking.
