Friday, July 24, 2015

A Dream...

Sometimes my dreams are so very vivid. I can feel them following me in the days that follow. The idea that I should be taking something more from them is never far away.

I am going through a period of change. I am struggling to find who I am and accept who I was. I still question so much about what I should be doing. Where I should be going. Who I want to be. I still ache for things I cannot change. And I am still so very driven by this need, this compulsion, to bring change in the world. It's overwhelming at times. I can't find the path of how to get there. I just know I am supposed to do something. And so I search my soul. I feel every feeling that comes within me because I'm afraid that if I push it away or under or out, it will be the one I was supposed to feel.

I'm lost. And so when I have dreams such as this, they follow me. They guide me. They try to tell me something. I just keep listening. Nothing in all the world--no experience, no joy, no pain--has ever changed me in the way the loss of my brother continues to.

I walked upon the sandy beach, feeling the granularity of its composition molding to each step I took. The abrasion of it between my toes worked its way through the tenseness of my body and ache of my soul and into my wandering mind. I pretended I could feel you there. I pretended you were with me as I listened to the exemplified crest and fall of the waves in the darkness.  I wondered why those waves always sounded so much louder after the sun’s descent beyond the horizon. Was it the stillness of the world that allowed me to be more present in the moment? The solitude that gave me the ability to hear and feel and move with more intent and more cognizance?

I approached the outcropping of rocks along the cliff. I sat just in front of it with full view of the night sky and I looked up. I looked for you. I looked for me. I looked for a link between the past and present, and I searched for a future I couldn’t see. The stars taunted with effervescent light. I sought out the famous constellations, searching for one, or many, that would make me feel closer to you. 

I lay upon my back and felt the sand shift under my slight weight. Closing my eyes, I breathed in deeply and allowed that same breath to release itself from my earthly body. I chose to feel. To search. To allow the world and the universe with all its infinite secrets to wash over my still form as I laid upon that beach, such a tiny piece of such an enormous landscape. I allowed the pain of your loss to seep into my skin, my blood, my bones. The uniquely human experience fell over me as the tears collected in the corner of my saddened eyes. I feel. I live. I love. I miss. I hate. I anger. I cry. I mourn.


As night grew into morning, I began to feel the calmness of my heart. The steady beat of a life still yearning to live. Opening my eyes, I stared into the vastness above me, and I felt peace surround me. I felt the crescendo of the waves, the vibration of the Earth, the pulse of the night sky enter me, bringing me to a place of love and acceptance. The spirituality of it became overwhelming, yet I welcomed it. I surrendered to it. And in the moment of rare and simple and exquisite peace, I felt you.  I felt your heart and your love and your memory deep within me and I remained open to you. And then I woke up.  

Monday, March 9, 2015

The Ways We Struggle

It's been nearly four months since I lost my brother. While it's true I am having more good days then bad, there are still so many times when I feel the breath leave my body and I feel so very heavy.

Over that time, I, of course, have done a lot of thinking. You know, when something so quick and tragic happens, we inherently look for answers. Why? Why do we want to know every detail? It's as if we're searching for something. Initially, we want to appease our mind that our loved one did not suffer. We want to know that the pain was quick and decisive, if felt at all. We want to know our loved one had no time to realize the end was upon him. We need to know this.

But ultimately, we are searching. Somewhere in the back our minds, we our searching for a solution. We're problem solvers. We see a problem, we encounter a problem, and we look for ways to resolve that problem. So in our minds, the more information we gather, the more likely we can find a way to resolve it.

We categorize this information in ways that allow us to build a world of "what-ifs." What if he'd worn his seatbelt? What if the top of the Jeep didn't cave him? What if he'd just been thrown from the window before he broke his neck? Then would he be here? Would he be alive?  Why did he have to break his neck? Why!

What if the night my mother called, she was telling me he was in the hospital? What if he was in ICU? How different would things be? He'd still be here. And he would've had a chance to fight.

We pull all of this information together in an attempt to create a new outcome. One we can accept. One that doesn't leave us fighting to make it through the day in such anguish. We search for ways to make fact become fiction. To make truths become untruths. We want to rewrite history in such a way that we ache with the need to make things different.

But for as hard and as long as I search for a solution, there is none. No amount of rewriting things in my mind will bring about the change I seek. I can no more change the past than I can predict with accuracy what the future holds. And all the scenarios in my head. All the conversations I am having with him will not make them real. There is no reality by which my brother will be here on this Earth. There is no reality in which I will spend another holiday in his presence or hear his voice on the other end of the line.

And even though I know all of that to be true, it doesn't stop me from searching. It doesn't change the war waging within me. The war to find a way to bridge the gap between reality and fiction. To make what I know will always be truth into fiction. To change and rewrite a segment of time. I continue this fight with such veracity. And even though I know its a war I cannot possibly win, I still find some solace in the altered outcomes and conversations my mind continues to weave.

Monday, January 12, 2015

Final Words

"It'll be alright. I ain't gonna let nothing bad happen to you."

The last known words my brother said. He said them to the guy sitting next to him just before they crashed. The guy that walked away with a few torn ligaments.

He was true to his words.

Thursday, January 1, 2015

Stuck

I have so much to say, but I don't want to say it. I push off writing down the memories of the night I found out. The call I never thought about never wanting to get because I never thought I'd get it.

I'm not ready yet. To tell the story. To hash it out. But inside, it's killing me. Inside, I feel so lonely and angry and hurt and desperate. Desperate to change things I can't change. Desperate for anything else to be reality other than what is reality. I mourn every single day. Every hour. I'm trying so hard to stay positive. To hang on to the good things. To focus on what I have right here in front of me. But I'm struggling to motivate. I don't want to do anything. And I know if I allowed it, I'd crawl into bed and never climb out. But I don't allow it. Somehow I wake up and get up and move forward with my day. One step at a time.

I can't tell it all just yet. But I feel it wanting to escape. I feel the story pressing against my insides begging for release. But I just can't because I can't let it go. I can't face it. I can't handle it.

I DON'T want to do this. I hate it with everything I've got. I hate it, HATE IT, HATE IT!

And I know I can't be all mopey all the time, but I also can't be happy. I want to move into 2015 with hope and happiness. Instead, I just want to stay in 2014. I want to go backwards. I want my baby brother back.

I can't move. Sometimes I can't breath. Sometimes I feel so weak I'm afraid I'll fall. I have never felt such relentless pain in all my life. I've never felt it in every part of me and deep into my bones. It steals my breath and pains my soul.

I want it to get better, but it doesn't. Not yet. I have good days and bad days, but it's always there. Constantly there. I feel like I'm falling apart and everyone is ready for me to be over it, so I'm silent. I say nothing even though I know a piece of me left with him. I feel so alone.

I want to scream and hit and throw things. I feel the anger breeding deep within me, boiling up and ready to spill out of me. I think about hitting something hard. Hitting the wall. Just to release the anger. I want to feel it. But I don't. I don't because I don't want people to think I've lost my mind. Sometimes I want to go outside and scream as loud as I can. But I don't. For the same reason.

I feel locked in emotions. Emotions from all sides.

Monday, October 6, 2014

Why My Husband Is Not My First Priority

I've seen a lot of posts lately about making your husband your first priority and how not doing so is detrimental to your marriage and the family unit as a whole. And quite honestly, I just have to vent.

I'll start with...Are your KIDDING me!

I get it. God said something about something that meant women are subservient to men and blah, blah, blah. Or, you could go with the argument that men need to feel needed and wanted and loved after the birth of a child. Or even the other argument I've heard. Kids will leave the nest.

In face, here's a little something I picked up on a quick search about the topic:

Ask Him for Input!

So, ask him if there is anything special that would really bless him. Some men have a hard time thinking of these things on the spot (or working up the courage to say them!), so I’ve included a list of ideas to get the conversation going. Show it to him and ask if any apply.
  • Making (or not making?) certain meals.
  • Giving him “downtime” for a few minutes when he gets home.
  • Packing a lunch for him the night before.
  • Making an effort to keep a particular part of the house clean (kitchen? bedroom?).
  • Taking part in his favorite hobby.
  • Taking a nap/rest when the kiddos are napping so that you’re not “too tired” in the evening. ;-)
  • Wearing (or not wearing?) certain clothes. (My hubby loves my yoga pants, which are a comfy alternative to sweatpants, ladies!!)
  • Planning fun family activities.
  • Allowing for more family “downtime”.
This is from A Biblical Marriage. There's not a single spot in that article that says anything about what a HUSBAND can do for a WIFE. It's all about making hubby happy. Seriously, I'm expected to make his lunch for him the night before because I don't have enough to do making ETHAN's lunch? I understand this women is obviously a stay-at-home mom and that's cool. I don't care. But I've read other articles that make it pretty clear women, regardless of working or no, should do make husbands their first priority. 

But here's what I want to know. Why do these articles lead your to believe that if you don't make him the priority, he's going to go hump the next girl he sees? It seems ridiculous to me. 

My kids are my priority. They have to be. They need me. And I can screw them up. It's all I can do to keep up with work and kids and meet all of those crazy expectations. I feel like this is just one more area where someone can point at me and say, "Oh no! You're screwing up. You're husband's gonna leave you if you don't get it together!" 

I've been married for 12 years. I don't have a perfect marriage. And life with little people is way more difficult than I ever anticipated. I'm exhausted 24/7. I barely make time for myself. I tell my husband daily that I love him. I give him hugs. I thank him for helping with the kids...sometimes. And I expect that same treatment. I expect him to reciprocate. But I can't make extra time to fit in something "nice" to do for him on a regular basis just to make sure his precious ego is fed sufficiently enough that he won't leave me because my world is centered around the two children we created together and hope to raise into responsible adults. 

It's not that I think women should just forget their husbands exist or show them no attention, but in a world where every parenting decision we make is equally criticized by some other mom and there are a million and ten ways we can make ourselves feel like we aren't measuring up, I think it's unfair to put undo pressure on an already pressurized situation. I'm in survival mode. But you can bet your ass that once survival mode begins to move into a more stable environment, I will be more than ready to hang out a little more with the husband and talk about....normal things. 

Wednesday, July 9, 2014

The World According to....

I wonder sometimes how different I would be today had my childhood been different. Sometimes I look at my kids and wonder how different they would be if they were living the type of life I lived at their age. I wonder how vital environment is to our success and how I became successful despite my environment.

But then I wonder if I actually did become successful or if I was actually stunted from achieving my true potential. And I wonder how many other adults are walking around just barely a part of what they could've been. If only.....

As we move through the various motions required to ensure Ethan has the best possible chance at being successful in the public school system, I am forced to face some rather surprising and squashed memories. Nothing horrible. Just the sort of things that make me ponder the above....

I wouldn't consider myself very smart. My vocabulary is limited. I don't feel capable of "keeping up" with smart people. I never felt this more acutely than in my college major. It's a wonder I stuck with it actually. However, when asked, "Were either of you in a gifted program in school?" Well. Yes. I was. It was brief and I only remember learning about light refraction, but nonetheless, I do remember going to the house on school grounds and learning about really cool things with a small group of kids. It was fun.

And that got me thinking.

When I was sevenish, I remember my grandmother speaking to someone on the phone. She was talking about me. She said I had an extensive vocabulary and what was really neat was that I could hear a word and use it properly in a sentence immediately.

And then I thought about the fact that I read Edgar Allan Poe's "A Cask of Amontillado" when I was seven or eight. And my memory. It's not quite as a good these days, but when I was Ethan's age and older, adults constantly commented on my ability to remember the most obscure things and, well, everything. I remembered everything. I can still remember things in such vivid detail. I can find places because I can see what the scene looks like in my head. It's pretty useful. I can do the same thing with codes and numbers. Not always. It's random, but there are times when I can see a sequence of numbers and remember it forever. It's like I take a picture of it and I can physically see it. Maybe that's normal.

The point is not to point out that I'm smart. I've already said I'm not that smart. The point is to point out that maybe I was. I recently heard from a piano teacher I had way, way back when I was nine. She said, "I just remember how good you were and how intelligent you were." Me? What? I was?

I think I was. I think years of living in an overly stressful environment where everyday was a freaking crap shoot did a number on my growing brain. Damn parents. Damn environment.

Really I'm okay with it. God knows I've done enough damage to that little brain of mine in college to NOT get angry about other people's inflictions.

Maybe, though, it would've helped me now as I'm going through all the things we're going through with Ethan and likely Dylan.

And...it gets me thinking about that whole nature vs. nurture thing.

Wednesday, April 30, 2014

Sometimes You Just Have to Hold On Tight

To say my world has been a constant state of chaos would be an understatement. I'm not sure what the universe is trying to do to us, but I'm ready for things to finally settle down. Sometimes I feel like we conquer one thing just to encounter the next. Cryptic? I'm getting there.

Last July, Ethan began getting sick. A lot. I've already been through the journey to discovering he has Celiac disease and the shift to gluten-free within our household. It hasn't been that bad. In fact, I'm currently enjoying cauliflower rice with sesame orange chicken that's gluten-free and diary free that I made myself. It's delicious. But that's not to say it's be EASY either.

Yesterday Ethan had a Celiac re-check to draw some blood to see where his levels fall. Due to the timing, he would miss school lunch. Big deal, right? Um, yes, it's a big deal because it means I have to find a place that takes gluten-free seriously and doesn't look at me like I've grown two heads when I begin asking about cross contamination. We don't eat out much these days, so I haven't learned the "safe" places yet.

Whats worse is that I recently read more than a couple articles (found in scholarly journals) that show a link between aluminum adjuvant used in vaccines and autoimmune diseases. Celiac is autoimmune. There's no proof, but there's no way I can KNOW for sure the vaccines didn't bring it out. When I get my head above water, I'll have to do a bit more investigating.

Our transition and Ethan's subsequent medical bills began to come together in January of this year. In February, I discovered something rather disturbing in my left breast. A rather large lump. In effort to make sure I wasn't crazy, I made the husband cop a feel. He made a funny face and said, "What the hell is that." I responded with, "Well, I guess that means I should get it checked out."

Two days later, I was sitting on the crinkly paper covering the make-shift exam table in my OB's office. She felt around and conferred that my husband and I were not crazy. She thought I should move forward with a mammogram just to rule anything out but felt pretty confident that all would be well. That lump was probably fibroadenoma. Benign. But let's be safe.

Two weeks later, my precious, small boob was being unceremoniously smooshed between a plastic plate and a piece of metal. In a variety of directions. As is customary, the area was also checked out via ultrasound. And I was sent back to the waiting room full of ladies with similar fates staring at TV screens, phones, or magazines.

They called me back to the tiny waiting room and I waited. I waited for the radiologist to come in and tell me everything was fine. To tell me that it was just the same spot I had biopsied in 2006. Because it was in the same exact location. Maybe it had just grown. My OB wasn't concerned. All would be well.

"I'm concerned and would like you to have a biopsy of the area." Wait. What? That can't be right. I'm going through this again?

Why? I asked. She explained that the area had changed and was bigger. It also had it's own vascular system, which concerned her. Cancer likes to develop its own little colony, blood and all. There were several things that made her feel it was suspicious. And so I left that office feeling a little numb.

And I researched everything in sight. I looked up everything I could with the knowledge I had. My BIRADS score was a 4. That was better than a 5, which was definitely cancer. It meant I had a 3% to 93% of having cancer. There was no 4a, 4b, or 4c. It was simply 4. I was beside myself with worry. I looked up sad stories and happy stories and everything in between.

Two weeks later, I was laying on an ultrasound table being poked, prodded and rubbed. My arm stretched above my head. Two screen within my view. One displaying the horrible lump that brought me here. The other blank. The women that prepared me, sterilizing everything, chatted away. They asked about my comfort. They talked about her recent trip to Puerto Rico. They waited, as I did, for the doctor. And when she came, they stuck me once, twice, three times with small needles to numb the outside and inside of my fragile breast. And then I saw her pick up the knife and felt the pressure as she sliced a tiny incision big enough for a 7-guage core needle. She took a total of four core needle samples. I watched as the blank screen came to life to help her guide the needle into the mass. I watched as the vacuum sucked out the "suspicious" tissue. And when it was all over, I was bandaged up and sent home to rest.

Four agonizing days later, my husband and I returned to the breast clinic. We were greeted within minutes of our arrival. My husband began to worry as we were escorted into a tiny room to find out my fate. I worried.

"Well, it's not cancer, but it's not benign either." Wait. What? What? Then what the hell is it?

My husband rarely asks questions, but he asked her to write down the exact name of the thing that was turning my life upside down. Radial Scar OR, when the lump is as big as mine,  Complex Sclerosing with Atypia Ductal Hyperplasia. What's that mean? It means it's a nasty piece of mass that isn't all that common. And to make matters worse, it has atypical, or abnormal, cells hanging out and propagating in mass quantities. It means it raises your risk for cancer by 4 to 5 times. It means you gotta get the damn thing out before it gets real wild and turns into CANCER.

A week and a half later, I was looking out of the window of a breast surgeon's office wondering how in the hell I ended up here. I was fortunate, I'd been told, to get in with one of the best breast surgeons in town. When he came in, he looked over my report and stated what I already knew. The radial scar could be watched if it didn't have atypia. But that was a deal breaker. It had to come out.

Three weeks later (last Thursday), I arrived at the hospital at 7:00 a.m. I was taken back and placed in my room. I was wheeled over to the breast clinic and numbed. I was fitted with a small wire that would help the surgeon find my nasty lump. It was deep and not in the usual location for this type of mass. I was wheeled back and given an IV and a sedative. My husband went to the waiting room and I waited in unanxious bliss until they came to get me.

Surgical rooms are bright. So. Very. Bright. I mean it's the brightest room I've EVER seen. So white. So clean. I felt the drugs enter my body. I remember saying, "There it is." And then I woke up. I woke up talking nonsense and remembering that I was talking nonsense. I was trying to figure out why I was fixated on the nonsense I chose to wake up spewing. It was about Doulas and Doctors. It was strange.

I was wheeled to my recovery room and honestly, it's all kinds of hazy from there. I don't remember much. I felt loopy and off kilter the rest of the day. And I've been sore. So sore. And I've felt like a wheeny for it.

But then I figured they had to go in through the side almost directly under my armpit. It's 1.5" long. It's through muscle rather than just tissue. It's sore.

Today, I received the news that the 90% chance no cancer would be found came through. There was a 10% the core needle biopsy missed something. Today I found out I DO not have cancer. Just a scar and a tiny indent to remind me why self breast exams are important. After all, I found my own lump and took a proactive approach. Had I waited even a mere 6 months, my outcome could've been significantly different. There's not a lot scarier than looking at your young children and fearing you may have cancer and that cancer may take you away from them.

I bet you think that's it, right? It's enough, but it isn't.

In March, Dylan got sick. He was having trouble breathing and we ended up with breathing treatments. He almost didn't get to come home with me that day, but my doctor knows me and knows that even if I'm all "no unnecessary meds" I'm going to listen to her when she tells me he NEEDS something. And then we talked Asthma. And the fact that he probably HAS asthma. He can't be diagnosed now, but all indications point to that direction. Family history, extreme eczema.

But I'm not done. 

Ethan's preschool gives an eye screening. We received his eye screening with areas of concern marked. So I took him to the optometrist. Low and behold the child is nearly BLIND in his left eye. He can't see the BIG letters. Better than 20/20 in his right. The doctor said, "You're just going to need to make sure nothing happens to his right eye." Oh, and he'll have to wear glasses. He apparently HATES that idea and is concerned he'll look silly. I can't fix this for him, but I can make sure he gets the BEST care possible.

Next week, on Dylan's SECOND birthday, I'll take Ethan to an ophthalmologist. We'll see what they come up with and if this thing can be corrected.

And finally....

Ethan fell 8' out of a tree. He landed on his stomach, lost his breath and had so much dirt crammed into his mouth, I was certain he'd be missing teeth. He came out fairly unscathed and learned a valuable lesson. For me, I briefly let my mind wonder to "what if" he had landed on his head or broke his arm or paralyzed himself. Briefly. He is a boy. 

Good things?

They're hard to find right now, but I'll try. We're planting our garden this weekend. I'm excited for that. We got the truck my husband wanted and we're all in love with it. We're all "healthy" for the most part and happy. I have an amazing family AND Spring is upon us. Swim lessons are starting. I truly have SO much to be thankful for, but today, this moment, I'm most thankful for being CANCER free. :)