How is Garrett doing?

"How is Garrett doing?"

It's a question I've heard a lot these past few days and I get it, I do. Of course friends and family would want to know. They care, and that's beautiful.

It's just that it's messing up our carefully constructed bubble of pretending none of this is happening. I know how completely selfish and horrible that sounds, and I know that when we post on Facebook or blog about it, it's kind of inviting the question.

So I want anyone who reads this to read what I am about to write, but also ignore what I am about to write, because what is most important is that you care and that you check on him, because that's what you're supposed to do and we're supposed to let you.

If I said he was fine I would be lying. He has a lot of trouble sleeping and the symptoms of whatever this is are not going away. We're scared. We don't show it because we know then you will be scared and we're not sure we can handle that fear compounded with our own.

This past weekend we had a cookout with friends and family and it was a way to just be normal for awhile, a way to not think about anything. I didn't realize that our friends and family would want to talk to us in person about what is happening, and tell us they were thinking/hoping/praying for us. I talk about it online because it's easy. It's just words. When I have to talk about it in person, that's very different. In person I have to face it. I have to look at you and see that look of concern, and I have to try and not look so scared. I wasn't prepared for that this past weekend. I found myself brushing off your comments and smiling and moving the conversation on to something else and I didn't realize until later that I was doing it. Looking back, I feel bad because I know you needed to get out your feelings too.

My mom dropped by my office this morning and brought me a gift, and it's amazing and I love her for it, but she asked what time Garrett's MRI is tomorrow morning. I found myself shutting her down almost immediately. My whole demeanor changed because I just couldn't deal. I couldn't get her out of the office fast enough and that is terrible. It's what forced me to sit down and write this because I feel like if I don't get it out of me, it's all I will think about.

I want you to continue asking about him and thinking about us, and I will continue posting updates. I just want you to know that I am sorry if you talk to me and I am not quite with you. It's not that I don't want to talk to you, it's that my defense mechanisms are in full-gear right now and I'm hiding behind some pretty high walls.

Answers

"I can tell you you're not crazy, and something is wrong."

Relief. We felt overwhelming relief at hearing that after a year of doctor visits, some of which blamed anxiety on G's symptoms, that they were so very wrong. Earlier this week our primary care doctor told us that she had nothing left to test for and that his symptoms were the cause of irreparable nerve damage from his tumor surgery; not fixable.

Today we discovered what we should have known over a year ago.

There is something wrong in G's brain.

"I can't tell you definitely if it's a tumor yet, or something else in there going awry, but his brain is not working properly and it's causing these symptoms. We are going to rush the pre-authorizations and get an MRI of his brain and neck as soon as possible, within the next week."

That should have terrified us and yet, we both sat there and sighed in relief. It's an answer. It's a place to start. It's scary as hell but it's better than, "Sorry, you're either a mental case, or we can't help you."

In addition to his body's inability to control his heart rate, blood pressure, and temperature, the neurologist discovered why he can't drive and why he is feeling numbness in his arms and legs. Both signify a problem with the brain or spinal cord.

"There is nothing wrong with your eyes. Your vision is fine, which explains why the optometrist could not find a problem, and why the vision therapy did not make you better. Your brain is the problem. Your eyes can't track because your brain cannot process the visual information. That combined with the severely hyperactive reflexes and your symptoms all point strongly to something going on in your brain. We need to take a look, see if something is pressing on something."

So here we are with more questions, but definitely a direction. For the first time in a year we feel like someone is listening and not shrugging off certain diagnoses simply because of his blood work or the fact that he's only thirty three.

"What's going on with you is not normal and we are going to figure this out."

We both broke down in the car, and while I think we are nervous about what lies ahead, we're grateful that someone is now taking this seriously. We also get the distinct impression that his neurologist is a friendlier, slightly more ADHD version of Dr. House, and it was clear to us today that this man cares about finding the answer. Knowing is infinitely better than not knowing, and hopefully for us, G's brain will tell its story within the next 14 days.

Three Years

Three years.

It's been three years of dealing with the fallout of a non-malignant tumor. I mistakenly believed that non-malignant meant everything was going to be fine. "It's cancer, but it's not going to kill him." That's what the doctor said, and I felt relieved for the first time in months. I felt so relieved that when they sat us down and told us the tumor had grown so large that the risk of severing G's facial nerve was 60%, I nearly broke down in tears in front of the surgeon. "What does that mean?" we asked. "It means there is a 60% chance he will not be able to speak or smile. It means he will have palsy on that side of his face." I remember sitting in the surgical waiting room with our two children and it taking everything in me not to sob. Surgery took 6 hours and when it was over, I was just grateful he was alive; that he could smile through the haze of drugs and stitches and blood caked on his face.

Three years ago, everything changed.

Even as I type this I feel ashamed at how upset I am because I know there are people dealing with far worse. I know a specific person dealing with so much worse.

Watching him today absolutely destroyed my soul. He was so hopeful that they could fix this and to be met with something that can't be fixed, just merely managed, is heartbreaking. I've not seen him like this since California and I hate it. I hate that it's him and not me. I hate that we never went to Savannah for his full-ride art scholarship; that it took so long for us to realize what our relationship really meant; I hate that we didn't stick it out in LA even though we were drowning; I hate every moment that he was never able to fulfill his dream; and I hate that I love him so much that my heart has been breaking for three years.

I will never let us quit again.

Amor Fati

Since I've challenged myself to write more often and have absolutely no patience for writing a lengthy fanfic, short story, or starting my own novel at the moment, this blog is going to encompass all of my weekly ramblings. Tonight's installment is brought to you by the fact that I actually have a hard time telling those closest to me how I feel. While I think G knows what I am about to share with all of you, I am hoping that seeing it in the open will prove to him that I actually do think he is amazeballs.

Amor Fati

Lucky.

I feel incredibly, beautifully lucky.

When I look back at all of the things we've been through together, I am awestruck at how we've survived it all. You think I have Amor Fati inked on my right wrist because of The X-Files and in part that is true. The larger part however is that it's a constant reminder that no matter what happens to me in this life, the moments I have of pure happiness are worth all of the pain and suffering to get to them.

You are the most amazing person I've ever met and being with you has been the greatest experience of my life. You fill my world with immeasurable joy. You give me the courage to fight harder, to fight longer, and to believe that anything is possible. You remind me that it's okay to play in the rain and that life is so much more than just going through the motions. You're the part of me that I spent half my life missing and you will never know how much that means to me. Everything I've done, everything I've been through, every stumble along the road towards this life I now have with you...I'd do it all over again if it got me to right here. I love you, and not because you're the father of my children. I love you because you're the most fun I've ever had and I don't ever want it to stop.

Winter in the Mountains...Like a Boss

Garrett will say that this entire weekend is my fault. I'm sure it makes him feel better about the aches and pains and freezing temperatures, and really, the second night of near hypothermia was my fault, but I digress.

We woke up at 6am (seriously) on Saturday morning to head up to the trail head at the Elkmont parking area in the Great Smoky Mountains National Park. We were loaded up with 25lb packs and ready to tackle the wilderness. It's worth mentioning that this was only the second time we'd gone hiking with these packs and we were about to set out on a 3-day hiking excursion in the back country. On our test hike the weekend before, I accidentally spilled our ramen, so Garrett was convinced if we were going to die this weekend, it would be my fault.

The first sight we spotted along the trail head as we made our way up a slow incline of a hill was a grouping of dilapidated cabins being reclaimed by the forest around us. The kids thought it was amazing, but G and I were still getting adjusted to the fact that we were about to haul these packs 8 miles into the back country. We were counting the miles to the nearest city, the nearest hospital, and the nearest Mellow Mushroom and Starbucks (Pigeon Forge by the way). We continued along the Goshen Prong trail, excitement building as the sun warmed the trail ahead of us. The 8 mile trek was rough with the packs, but the payoff at the end would be a campfire and a lot of relaxing.

We made it to camp around 5pm and spent about a half hour looking for the perfect place to set up our new ultralight tents. We were the only people in this part of mountains and we would later learn there was a good reason why. Garrett set about getting the tents together while Dante, Julien, and I went on the hunt for firewood, rocks, and began to build a campfire area. After that, we headed down to the river to filter 4 liters of water to last us the night. By the way, Mountain water is cold. Ice cold.  The kids and I headed back to camp where Julien quickly learned how to work the bear cables and had his pack raincovered, and hung in no time. In fact, he had to teach me how to use the rigging system. I mentioned before we were looking forward to relaxing? Well we quickly learned there is no relaxing in the back country. When you have to carry everything in on your back, walk to water, filter your own water, make sure there is not a single crumb of food on you or in your tent, hang your bags, food, and toiletries and then spend an hour getting a good fire going then hunting for enough wood to keep it going, there is absolutely zero relaxing at a back country campsite. Cooking takes on a whole new art with a single burner, a fire, and a few lightweight metal bowls and spoons. If you spill, you start over. If you have leftover food, you have to bury it, then you have to carefully wash your bowls. If you are not hungry, you have to force yourself to eat or you're going to hate yourself in the morning. The most humorous part was convincing the kids to poop in a hole and then use a trowel to cover it up. For the bears? they asked. No. So we don't step in it.

Things were going well as the sun began to set and the moon and stars came out. The temperatures were dropping but they were manageable. We were so exhausted that everyone was falling asleep in front of the fire by 8pm. Julien decided to go to the tent early and read a book. He was snoring half an hour later. By 8:45pm, we all decided to turn in, too tired to think and knowing we had a 7 mile hike the next day to the next camp site. Things were going well until 12:30am. The air turned so bitterly cold that we all woke up, shocked. Garrett came to check on Julien and I as I got up to put more layers on Julien and zipped him back up into his bag then hugged him next to me. For the next 4 hours, Garrett and I sat up completely unable to sleep and seriously contemplating starting a fire in the middle of the night to stay warm. Legit, laying by the fire cowboy style and we came very, very close to doing it. For hours we waited for the sun to make its appearance as the kids slept completely unfazed and somehow not freezing in their bags. I don't even think I slept 2 hours that night.

Once the sun finally made its appearance, we were so exhausted and frigid that it took over an hour to get a fire started. My fingers were like rocks and I just walked around numb, collecting firewood. An eternity later we had a roaring fire and forced ourselves to eat, figuring the calories might warm us up. The kids of course were bounding around the campsite, drinking hot chocolate, and acting like this was the best time they'd had in their lives. Garrett and I kept joking about how we were idiots for doing this in March and suddenly realizing why no one else was on this mountain.

By the time we broke camp, the sun was rising in the sky and the temperatures were fast on the rise. We made our way back down the trail to head toward our second campsite though Garrett and I kept talking on the trail about the weather and that if the weather was as bad as the night before, we probably needed to just head home. As we got halfway to our next destination, we passed a group of back country hikers who believed the weather for the night would be better than the night before, and in their defense, it was a lot warmer that day than it had been the day before. The deciding factor was a blister forming on my foot and the realization that the next campsite was only 1 mile from where we were currently and the car was 6 miles away. We made the decision to risk it, and go set up camp. In retrospect that was a bad decision and Garrett is not going to let me forget it.

After another exhausting day of hiking in the mountains with 25lbs on our backs (no we never do anything easy), we finally reached another back country campsite and began to set up camp. We were cautiously optimistic and fought with getting a fire started and were pleasantly surprised we got it going faster than the night before. Everyone pitched in and began collecting wood, setting up tents, drying clothes, and making food. We were super careful about crumbs, trash, and food as we had heard a bear on the way in a few hours earlier. We hung our packs on the bear cables (Julien was super excited about that again, though when the cable snagged, Dante had to put Julien on his shoulders in order to un-snag it) and began to settle in next to the fire, exhausted. By 8pm we could feel the air getting cooler but it wasn't as cold as the night before so we were pretty excited about that. The excitement was short lived however because even though we fell asleep around 9:30pm, warm and snug in our tents, the wind picked up and by 2am the air was filled with a bitter, wet cold. I piled every layer I had on Julien and shoved him into my bag with me then covered him with his bag as well. I spent the night freezing while hugging him next to me, checking his skin to make sure it was warm to the touch throughout the night. By 4am I gave in to sleep and slept surprisingly better than the night before though I'm pretty sure it was exhaustion and not comfort that took me into dreamland.

As the sun rose, I heard the bear cables and looked out to make sure it was Garrett and not a bear fighting with our packs. The headlamp gave away the fact that a human was across the clearing and not a bear, so I threw on some jeans and a t-shirt (Julien had every other bit of my clothes on, along with his) and found my jacket buried under him to put on. I started collecting firewood and boiling hot water as Garrett started building the most difficult fire of his life. To his credit, he didn't complain about the fact that I'd made him spend another night in the frigid mountains...in the winter. I have never been so thankful for boy-scouts as I was this morning and I'm dead serious. Garrett is a phenomenal woodsman. He ties knots and all sorts of useful shit. That man could start a fire in 30 below zero in a driving wind and let me tell you, as independent as I am, that was downright sexy as hell. The feminist in me cried a little.

I'd like to mention here that my firstborn son complained the most about going into the wilderness, mainly because we made him hike uphill with a 25lb pack on. Actually it was closer to 26, but told him it was 25. Once we got started, that kid was like a freaking machine. He hikes faster than all of us and slept through two frigid nights without once getting up to go pee and without a single complaint. He slept more than the rest of us combined and was more than happy to go collecting firewood or whatever. He even helped me pump water, which let me tell you is probably the worst job of any.

So, Garrett had the fire started and Dante and I returned with water when a family of deer snuck into our camp, the youngest of which was obsessed with Julien. This thing followed him around the camp. This was actually Julien's first real experience with wildlife in the back country. I say first real experience because we failed to mention the bear the day before. We had been walking along the trail and heard rustling in the woods next to us and very clearly, and I do mean VERY clearly, heard a bear making its presence known. When Julien asked what the sound was, I lied and told him a plane was somewhere overhead. "Oh it's the engine!" he exclaimed. Exactly Julien, an engine.

Around 10am we broke camp to head back to the car. In fact it was exactly 10am, though Gman argued it was later. I told him based on the sun in the sky it was most certainly 10am and he laughed at me thinking I was being ridiculous. I made a bet with him that not only was it 10am but that we would make it back to the car around 1pm. By the way, the reason we were guessing the time? Not a single one of our cell phones had power, not that it mattered because there was no signal, and none of us had a watch. We were legit telling time by the sun all weekend.

Everyone placed their bets on what time we would reach the car, with Julien and Dante choosing times somewhat close to mine while Garrett chose the incredibly unrealistic 4pm. I still think that in his mind he figured if we reached it at 1pm, somehow that gave him extra amazing hours to play with. We began hiking the 6 miles to the car, elated that our 25lb packs were more like 22lbs at this point. It may not seem like much but after several days in the wilderness, 3lbs lighter was a godsend. It took everything in me not to just ditch things on the trail to lighten the load. Garrett and I walked for miles, the blister on my foot getting worse as Julien and Dante bounded down the trail like energizer bunnies. While I limped half the distance, Garrett went on and on about how I had tried to kill us all.

After living in Los Angeles, we don't deal so well with cold so certainly going back country camping in March was...shall I say, ambitious. When we saw the dilapidated cabins we knew we were closing in on the parking area and began to see day hikers who looked at us like we were absolutely nuts. We were trudging out way down the trail singing a mixture of the Banana Boat song and Country Roads. I'm fairly certain they thought we were certifiable. At one point just before we reached the parking lot, a family stood in the middle of the trail taking selfies. Garrett leaned into me. "I will cut a bitch..." and I was right there with him. I did not just walk 20 miles to get blocked by some day hikers out there for a half mile excursion. Plus, I couldn't let Garrett win. Any delay in time would mean I wouldn't win the bet. Julien began counting every footstep at this point, announcing how many steps left to the car. Minutes later we collapsed against our SUV, threw our packs on the ground, and nearly fell to the earth ready to kiss it. Mark, my amazing step dad who had put up with us for three days, announced the time. 1:10pm. I had won.

20 miles, probably 21,000 calories burned and I'm not sure what a pop-tart and 2 slices of pizza add up to but I'm too tired to eat anything else tonight. While we probably won't do this again until late April or early May, I will say that this was the best birthday week I've ever had. All of these adventures we have? It's what life is all about. We all have to work, we all have to pay bills, go to school, go through the motions of life but this weekend? This weekend was about going back to our roots and realizing that at the end of the day, it's family. It's family and knowing that hard work, perseverance and teamwork means that no one gets there alone.

The Beginning

It starts the way almost everything starts, with a moment. A single, defining moment that sets the stage for everything that is to come. It's amazing to think that something that happened so long ago can have such a lasting impact. Amazing to think it can brand your soul with a pain that runs so deep that when it surfaces, you forget to breathe. My entire life I’ve fought it, dreamed about it, struggled with wishing for things to be different and embracing who I’ve become because they weren’t. Would I still be the same person? Would I go about my life with another purpose? 

When I was little I had only one goal, to get out. Everything in me pulled me forward to escape a reality I was barely surviving in. I learned early on that my capacity for enduring pain was high, but it left me with little trust and a lot of independence. Everyone in my life was just kind of floating, desperately clinging to anything they could to make sense of their own lives, their own struggle, and I was caught in between their worlds. There was a lot of hurt and pain to go around and after that day, the course of my life was forever altered, every relationship I was to have, foreshadowed. 

I walked into the courthouse that day holding hands with the woman I thought was a superhero, and I loved her with a ferocity that I cannot begin to put into words. She was my whole world. The first and hardest lesson I ever learned in life was on that day as we walked out of the courthouse, my hand in hers. I could feel her trembling, could sense the giant chasm forming in her soul, and when she lifted me into her arms and I held on tight, tears slipping down my cheeks, I knew then that superheros couldn’t possibly exist. 

He peeled my fingers from her coat, one by one, and nothing was ever the same after that. Deep inside there’s a part of me that has never left that day. It replays in sickening, heartbreaking detail and it doesn’t matter how old I am when the tears begin because I’m not just crying for that day. I cry for every day after that where it’s a struggle to have a connection with the woman who let go of me on those stairs. I cry for the man I grew to hate for putting his anger and pride above my pain, and I cry because deep down, I’m still that five-year-old little girl, her whole life being ripped away from her.

Every story has a beginning, and this is mine.

Unicorns and Rainbows and Maybe a few Tears

It's been such a long time. Over five years of my life and it's like not a day has gone by. I see her face through the screen of a computer and I talk to her through the clicking of keys on a keyboard, and if I'm lucky and have a chance to take a breath, I hear her lilting accent through my headphones during a Google chat.

The amazing part? When we talk it's like nothing at all has changed. We're older now, wiser now, and yet still somehow exactly the same as we were that bright sunny day outside of Virgin Records. I have these crazy, beautifully vivid memories of us that play through my head like a slideshow set to music; rap music for me and something a bit more sophisticated for her. Beaches and birthday parties, film sets and back patios. Making lemonade in the sunshine and eating cake in the sand. Always worried about paying bills, but knowing it was us against the world and that we don't give up, we don't back down.

I miss her. I miss her more than I ever thought I could. I miss that for a brief moment in time we were in the same space.

She represents all the parts of me that I try hard to still be: Fierce, frustrating, and utterly extraordinary.

Her birthday is today and since she's thousands of miles from here, these words will have to bridge the gap. She's my constant, and my touchstone. She keeps me honest and makes me a whole person. We can talk about zippers on jackets, what nail polish colors mean, and whether a unicorn's eyes are brown or green, and somehow it all sounds completely normal.

So Happy Birthday to my Avita. I love your face, always.