Mubar...It's the New Normal

There are so many things we have to be frustrated about. We have absolutely no idea what is going on with Scott. There are no definitive answers for what the mass is in his head, or why he is still having seizures. It could be a deadly brain tumor, it could be a virus, it could be something else entirely. We just have to keep waiting for another MRI and consult with the neurosurgeon to hear what he thinks will be the best course of action.

Our life is no where near normal. Totally mubar... is our new normal. If you don't know this acronym, its messed up beyond all recognition. Yes I know fubar is the real acronym, but I try really hard not to use that f-word. Humor helps keep me grounded. Scott and I tease about this tumor, this fresh hell we find ourselves in,  all the time. I know some people find it disturbing or irreverent. People will ask, "How's Scott doing?" I joke, "Well he's not dead, so I think he's good!"  I can't help it. It's just who I am and one of the reasons Scott and I get along so well. We make each other laugh. Truly, laugh. Even at things others do not find so funny.  It reminds us of all we have in common. This sense of humor and like mindedness is one of the gluey things that helps keep us together, even when everything else points to falling apart.

I think it's because there really is nothing else to do, besides cry. If my choices are cry and be sad, or laugh and be happy...I would rather find a reason to be happy because it just feels better. Even if I have to fake it.  I don't hide my emotions. I do feel them. I do get angry, I do feel sad. I have cried rivers. I think I cry at least once a day. But I laugh at least 10.

On top of having this health crisis, body issues and all my own baggage...we have two teenagers. TWO! At the same time! They are really good at pointing out hypocrisy and telling us we don't understand teenage life. Most days are great. Some days, I completely understand why some animals eat their young, or abandon them at birth....but only some days.

So... how are the kids?

Most days, they take their cues from us and seem perfectly fine. They too use humor to combat the yuckiness of this deal. Underneath it all, they feel all the stress, pressure, and fear that we do. I wish I could take it from them and knowing we can't, adds to the difficulty for all of us. They are at a point where they want to live their own lives and not be tied to home and family as much. They have friends, activities, school and social lives. The older ones struggle between being carefree teens and young people with very heavy burdens.

I think having to learn to live with uncertainty has forced our young to grow up in ways they probably wouldn't have had to quite yet. But they have become such great teachers. I would have missed this, if I wasn't really looking for it. Some of the greatest lessons I have learned through this experience so far, have come from our children.

Because they are teenagers, and do what teens do naturally, they have shown me that even when things are at their very worst, you still have to take care of yourself. They've taught me you don't have to dwell on what you can't control or change. They show me that surrounding yourself with friends and people you care about, and who care about you, is really important. They have also demonstrated a time or two,  that sometimes, you just need extra whipped cream and all the candy bits on that second ice cream sunday. It's okay because no one is counting, or caring, or worried that it will show up later, it just feels good! So go with it for a minute.

Our 8 year old, who is obviously not a teenager, teaches me that no matter what age a person is, they can have this inherent ability to see a need a fill it. She will often be the one to reach out and offer a hug, a love note, or a genuine smile, simply reaffirming the love that's been shown to her every moment since she was conceived. Her quiet gentle way, gives me strength to continue during times I think I might want to just quit.

Most importantly, all our children show us how to be strong in the face of fear. They show us by their example, how to live... truly live in the moment. They are not afraid of the consequences of choosing to be happy in spite of our circumstances. They can laugh just because they find something funny...no other reason necessary. It feels good, it helps ease the tension, so why NOT?

I cannot thank them enough. Our children, keep helping me find hope, because although life is not the same as it was, it has continued. I think we're laughing, growing, learning, and trying to become more patient  and understanding with each other. This part of our whole life experience...has yet to be determined by our children. Eventually, when they do look back on the mubar situation this became, they will see that what stayed normal was the love Scott and I share for them. And that will be enough. 

A Picture Says A Thousand Words We Need to Hear

I thought it was time to share our most recent family photos. One of my dearest friends, came to be with us during the time Scott was first scheduled for surgery in March. When it turned out that we didn't have to stay at the hospital, we came home and had some much needed fun and time together.

One of the things we have put off for years, are family photos. I can tell you, I am not a huge fan of having my picture taken. I don't feel like my body issues need to be immortalized, and I have always struggled with this. We have tons of pictures of our children, but rare are the pictures of us, being ourselves with our children just as we are.  They deserve those kind of memories. I deserve  those kind of memories. I know that now, more than ever. I feel so much regret for hiding away from the camera my whole life. "Who wants to see that?" Was the internal thought in my head, always.

Nothing like being told your time may be limited, to force you to wade through insecurities and get to what really matters. Nothing matters to me more than these individuals. I owe such a debt of gratitude to these people we've helped create and the person who has shared every single up and down, side ways, tragic, and magic moment for the past 16 years.

I cannot thank Tanya enough for making this happen. I'm so grateful for the lessons learned that day, and every day since this photo shoot. I will never again, miss out on a family event and not let my picture be taken with my loved ones. It's important. It's not about what you look like, it's about sharing the moment and showing your love.

“Give up defining yourself - to yourself or to others. You won't die. You will come to life. And don't be concerned with how others define you. When they define you, they are limiting themselves, so it's their problem. Whenever you interact with people, don't be there primarily as a function or a role, but as the field of conscious Presence. You can only lose something that you have, but you cannot lose something that you are.” ― Eckhart Tolle

This is what we are...a family. We struggle, we fight, we love, we play. We hope. We cannot lose what we are...and it's worth sharing. Always. So what, if your body's not perfect, few are. So what if your hair isn't great, no one cares about that. When we look at pictures, we are looking at memories. The whole point is to bring our minds back to that moment and recall an emotion. Never again, will I waste an opportunity to make a memory that my children, family, and friends can share, with me in it.

When I look at these pictures, all I see is LOVE. I laugh and cry and feel grateful for the people in my life that matter most. This is what is important. If I can share any wisdom here, it's that you need not wait, for the perfect shot, the perfect frame or moment to capture the images of YOUR life. It's short! It's happening now. It's here. If you're reading this, take a moment to think of all the people who love you and who would miss your face if you were gone.

Someday, we when we look back on this journey, we will not have to be reminded of the sadness and fear brought about by a brain tumor. We will have these pictures, and the memories of all the closeness and love we share, to reminded us of what an awesome family we are.

Nothing about these pictures is sad, or tragic, or terrible. People are all shapes, sizes, colors, levels of emotion, and experiences. Personality is what draws the heart in, not physical appearances. Who we are, the kind of person we become, is determined by our character, and what we do, not by how we look. I might be bias, but I think we're all pretty good looking and fun!

Embrace whatever/whoever you are and whatever you're going through. There is a reason you are who you are and where you are right now.  This is the lesson I have learned. Don't wait....don't hide. Don't tell yourself "no one wants to see that." These pictures make me happy. They bring me joy. I can't help but smile when I look at them. I know what we have, and even if it changes or is gone someday,  all I have to do is look at these photos, and I will be right back in those moments.

I could bore you to tears with all the psychological empirical evidence and neuroscience behind how the brain works. But nothing is more effective for changing your thought patterns and they way you think than meditation. I just lost you with the mere mention of the word meditation. Mumbo jumbo, hippie nonsense, yada yada...Right? The reason I share this, is because, if you're anything like me, you need something concrete, tangible and reliable to make changing your ways easier and long lasting.

What all of my posts generally describe is learning to become more mindful. Being mindful is the awareness of things happening right how. The great thing about our brain, is that it doesn't know whether or not we are actually in the present, when we are thinking our thoughts. We are just in whatever moment we are thinking about. Meditation helps us become more mindful. It doesn't have to look like all the stereotypical things you're thinking it is. You don't have to sit, or chant, or hum...you don't have to light the incense or burn any candles. You don't even need a yogi, or a Jedi master. All you need is you and your thoughts. You can read more specifically about how and why this works here.

Why is this important? This photo below is called "trust me."

It's important because when I look at these pictures, I'm instantly happy. I'm back in the park, playing with my kids and watching my husband do the same. I feel all the emotions I did in that moment, and my brain thinks this is all happening RIGHT NOW. Even if at the present, I'm struggling to see what I have and why I should be happy. The more I show my brain these images, the happier I feel, even later on when I'm not looking at them anymore.

You can never un-see an image. Its always there to recall and to retrieve anytime it's needed or wanted. In the depths of my sorrow, I can recall these moments of shear joy and the feelings these pictures and others like them evoke, and be in that moment, and feel positive emotions instead. It's simply the most powerful  and effective method I know to avoid being stuck in negativity. Is it that easy?  Yes! It really is. The more happy thoughts you expose your brain to, the happier and more hopeful you feel.

See for yourself. It doesn't take hours a day. You can do this for seconds at a time, several times a day, as often as you need. When you become more mindful of all the good that surrounds you, you will see hope is alive and well. Don't take my word for it. Try it. See if you can take yourself back to a happy moment of your own.

Even better, go and make a new happy moment and then take a picture.... It'll last longer.

Day 79 Another Seizure

Day 79 was a relatively good day, with nothing out of the ordinary happening most of the day. We had guests for dinner. Scott grilled up hamburgers and we enjoyed ourselves. We talked of fishing in Southeast Alaska once again. Half dreaming, half scheming, the conversation turned to if we might ever be able to afford to buy a fishing boat and return to Juneau, if only for a short season each year. This could be the answer. He seemed very convinced. 

Those who know me well, will know that this in no way, is the answer for me. Scott knows that too. But he pressed on, teasing me with how we could live that life, I could see all my Alaska friends, that I would get used to sleeping on a boat. I cringed. NO! I don't want to go back to Alaska and fish for a living. No. I don't want to give up all I have going here to be cold and wet even if it is only 5 weeks in the summer! I know... it's so selfish.

Have you ever done it? Think Deadliest Catch, minus the smoking captains and winter. A weekend..yes. A whole season...not a chance. We went over the pros and cons like adults, sort of. I finally gave in and told him if he could come up with a way to buy a boat, that would not derail our current plans to build a successful business and buy a home here, I'd support him doing it, but I would not go.

Our conversations often end in laughter. It's one of the greatest blessings of being married to this man. He ALWAYS makes me laugh. I said I didn't want to be the "crusher of dreams"  so I wished him well and said, "since you only live once, you do what you gotta do." He told me I'm not a dream crusher, I'm a dream maker and  he would stay here for me. There was a hint of somethings sarcastic I can't quite remember and we both laughed it off.

He stood up, kissed me, and we went to the living room. He poked his head in to tell our girl it was time for bed. He then turned to me, with that look in his eye and said something I couldn't understand. My heart began racing, my palms immediately went clammy. A rush of fear swept over me. I told him, "Honey, you're having another seizure." He shook his head in agreement and went to the sofa to sit. I said, "Do you want..." He immediately shook his head and said,"No! I'm okay. Just sit dakfeljkad." He looked confused. Shook his head no again and looked up at me with eyes that said, "I know what is happening, but I can't speak." He kept saying, "No, no. It's okay. I'm okay. Don't call." He didn't want me to call the ambulance again.

I sat with him for a moment, got up and asked him if he wanted me to call anyone. He said no. He grabbed my hand. I burst into tears. This time, looking right into my eyes, he told me he was fine. "I know it's a.." pointed to his head and said, "that thing." I asked him if he wanted to write and he nodded yes. I gave him a pad of paper and pen. He could not think of what to write. This went on for a few minutes. He kept staring at my eyes and was finally able to articulate that he could keep communicating as long as he could keep my gaze. He was able to talk to me in ways he couldn't the first time this happened. I found hope in that.

After 78 days seizure and symptom free, day 79 brought us back to fearing the worst. Why? We have no idea. He is taking anti-seizure mediation twice a day, every day. He's been feeling great simply no symptoms other than insomnia. Today's seizure was different than the first. It didn't last as long, he could still speak and understand, was more aware, and he never lost consciousness. He regained his speech after about an hour. Nothing like the first time, but the clock starts again. We were almost to 90days which would have brought with it a release to drive and the ability to do all normal things again. But now, we have to start over. I am logging what happened so we have a record to tell the doctor. Maybe we will be going back to the neurosurgeon sooner than we thought. We still had a few more weeks, with a scheduled appointment on June 2.

We need more research and less complacency. It's funny how you can be tricked into thinking everything is fine...even when it's not. Afterward, Scott went and laid down on the bed. We held each other tight. I knelt down and said a prayer for him to be strong, to be comforted, and not to have another seizure. That was a little after 10pm. He is still sleeping now, while I keep watch and write. I know we must press on and stay strong. I know there is a plan for all of this. The only thing I know for sure is it doesn't include a fishing boat. Not for right now, at least.