Trust

The fear of trust is often the fear of rejection. We all have to deal with this fear. It’s something that we learn as children growing up. I wish I could say that I was strong in that sense. I am not. It’s probably my biggest weakness. Compounded by scars that mark much of my body, I am still learning to achieve a balance.

I’ve often swung back and forth between trusting too much and not trusting enough. Both extremities are dangerous. If I build the wall too high, no one gets in. I leave it too low, I am vulnerable. Where do I find the middle?

I spent most of my k-6 years being too trusting. There are many stories that I can tell of my experiences growing up. One in particular still stings as if it just occured yesterday.

In 5th grade, I was enrolled into a new elementary school. I was scared to death. Not only would I be facing the daunting task of making friends with kids I hadn’t grown up with – I’d have to do it wearing a mask. Earlier in the summer I had undergone my 12th surgery. Skin was grafted onto my face from my scalp. I was then required to wear a “pressure garment” for at least 22 hours of the day. The pressure garment is tight and is soposed to help protect the delicate skin from the elements, but also help the new layer stay as smooth as possible.

That first day of school, I was so nervous. By lunchtime, I did work up the courage to ask a group of girls if I could sit with them. They allowed it and just like that…I found my circle of friends.

As in all social circles, there was a “leader of the pack”. We all followed her rules of conduct, her rules of appropriate dress attire, and we all nodded our heads yes when she wanted us to. She rarely allowed anyone else to have an opinion which bugged me from time to time. But I was accepted and therefore, I dared not rock the boat. It was already a few months into the school year when I discovered this flaw about the group and I feared it was too late to try to mingle with anyone else.

By the time we moved onto middle school, things had shifted a bit. Somehow, I started to set the tone for the group. I think everyone was just tired of the “same old, same old” from what’s her face. I had grown up on the “rough side of town” and therefore I had more interesting tales to tell. I was never obnoxious nor bossy like she was. I think everyone liked this. As she lost more and more control over the clique, she got really angry. Behind my back, she began to tell lies about me to our fellow gal pals. I don’t know how long this went on, but one day the beans were spilled. Her accusations were layed out on the table. It took every last bit of me to stand up for myself. In the end I walked away and never returned to that circle again. A week later, she actually asked me if I was going to start eating with them again. I said no & simply walked away for the last time.

What no one knew is that I was hiding on the forbidden side of campus during breaks and lunch hour. I was distraught over the betrayal of my so called friends. I definately didn’t have the courage to try and make new friends. There were only a few weeks of school left and I figured I could just hide out until summer arrived. Many times I found myself crying. I felt so alone.

One day, I managed to sneak into the building through a door that hadn’t been secured. I had intended on heading to the restrooms so that I’d at least be in the AC while waiting for the back-to-class bell to ring. I ended up running into “J”. I knew her from 5th grade but hadn’t seen her much that year. She said hello and stopped to chat with me a bit. She then asked if I wanted to go with her and her other friends.

There were 5 others in that group. I found myself relieved of the stress of having to fly solo in restricted areas of the school. All seemed to go really well. Two weeks later, it was decided we would develop a friendship club. We spent days talking about the rules and activities we would engage in. We came up with a club name and even a member’s only password. It was very exciting.

After  a week or so of planning, I found out a devastating secret. School let out for the day and those of us girls who walked home in the same direction made a quick stop at the ice-cream truck. For some reason “J” and “M” were whispering frenitically into a boy’s ear and laughing. I knew something was “off” but didn’t know what it could be. When our paths seperated, the boy rode over to me on his bike. He advised me that my “friends” were setting me up. The Friendship Club was going to be their way of slapping me in the face with rejection, and to do it very publically. They had no intentions of actually allowing me in the club. They were counting the days until the time would come for them to humiliate me.

I never gave them that chance of course. I never let on that I knew what was going on. I just simply disappeared again. Went back to hiding on the other side of school while everyone ate. I couldn’t understand what it was I had done to provoke such cruelty. I learned later that “M’s” older brother constantly made fun of me and my scars. He had a series of names he called me and even mimicked the way I sometimes stood with my mouth open, bottom lip jutting down. What he didn’t realize is that due to the tight scarring on my neck, the tissue pulled on my chin and in turn my mouth tended to hang open. It wasn’t something I could control.

I don’t know if the girls had always intended to embarass me or if it was a plan they came up with after being poisoned by the nastiness of one jerk of a guy and his friends. I do know that after that I was never the same. I became much more guarded. To this day, this incident, and others, still affects how I do or don’t interact socially.

Over the years, I adopted different coping mechanisms. I was everything from sweet to a tough girl. Being tough kept people from messing with me, but it also meant posturing an attitude I wasn’t proud of. Yet, that way, I felt in control. If I could control everything, I wasn’t as likely to get hurt.
Sometimes, when someone hurts me -even when it’s unintentional- I fly back to this moment. I find myself turning events over and over in my head, distrusting everyone and everything. I find myself waiting to be preyed upon and questioning everyone’s motives.

Eventually, I move on to hiding and keeping everyone out. It’s a vicious cycle. I battle with it and at times I am stronger than others. I’ve learned that I shouldn’t be embarassed by the things I’ve gone through. I don’t have to beat myself up over “what did I do?” This brand of anxiety always leads to guilt. Guilt for crying when there are those who have suffered even more. Guilt over not feeling like a stronger person.

It helps to recognize that bad behaviour is bad behaviour. If it hadn’t been done to me, it would have been done to someone else. It’s just not personal. I wish I hadn’t been so stubborn in hiding things like this when I was younger. I just didn’t want anyone, and especially mom, to know how vulnerable I really was. I read somewhere that it does help to let it out. So I am trying. But man, it is hard.

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A House of Dreams, A Foundation of Betrayal

     Once upon a time, I joined you in building a dream house. We knew it would be a long-term project, after all, neither of us had any experience. But I really wanted to be a part of that journey. I remember being so shy. However, I loved what we were doing and creating together. We were slow to advance, but that didn’t matter to me, I knew it would be worth all the hard work and frustrations once we crossed the finish line.

     Much more time went by then we could have ever anticipated – about 9 years – yet I never got bored. The years passed and so many different crew members walked in and walked out of the project. I was faithful. I was there. I knew eventually it would all fall into place. There was no reason to be impatient. Moreover, the most important work was in drawing up the blueprint, laying a strong foundation, and making sure all the supports and walls went into the right places. 

     And then, we started gaining momentum. At last, it seemed that we gathered all the right hearts and souls to finally surge ahead with our goals. It was fun; there was a lot of laughter. But there were a lot of bumps a long the way. Perhaps not everyone really respected your vision. Perhaps some only enjoyed being part of the crew, going a long for the ride and doing all the fun stuff. Perhaps.

     You asked for my help in setting the example and I accepted that position. I tried to encourage a strong work ethic, teamwork and sacrifice. But many times you didn’t back me up. Maybe you just didn’t see how much they tried to walk all over me -or worse yet, all over YOU. Maybe you didn’t notice that they were too immature or selfish to care about the impression we left on those who were just waiting for us to screw up. So they goofed around, abused the tools, and stalled us on occasion after occasion. You apologized from time to time, yet you never enforced a set of rules. You promised that things would get better, and I kept the faith.

     The neighbors began to get curious about the work we were doing. They cheered us along and quickly, the word began to spread. Before long, the whole town was overcome with expectation. They just knew that there was no other home like the one we were fabricating. No one had ever tried to showcase such excellence before. 

     Just as the last few nails got hammered into place, the last touch-ups of paint got brushed onto the walls, my heart was broken. Everyone got ready for the victory celebration and headed inside to rejoice in the glory of this beautiful new house. People all over the world were going to appreciate what we had done. The anticipation was breathtaking. We all began to head inside, and you stopped me at the door. I was to go no further. You didn’t think you could count on me in the future – I had too many other responsibilities. You never thought my commitment was sincere. You figured I was just passing time, I was just engaging in a hobby.     

      You never considered all the hours and work I put in. Maybe it was my error never to really speak up and let you know how passionate I was about participating. But I am shy. I really am not one to let others know of my needs or desires. I knew my contribution wasn’t perfect, but the passion was there. I knew I had a lot of improvements to make, but it couldn’t have been that bad. I received compliments and encouragement from many. Only once, did you turn to me and say “good job, I like what you did”. So is it just that you hated my work? 

     You never considered my feelings. You never told me that you had no intention of inviting me inside. Like a giant wrecking ball, you swung at me with full force, completely blind-sighting me. You tore a hole through my foundation, exposing all of my vulnerabilities. I felt all of my hopes and dreams come crashing down around me. And the shame, the shame was immense.

Do you know how ridiculous I felt when the party began and all the crowd was staring at me and wondering why I remained out on the street? Do you know how difficult it was for me not to scream and cry out and ask you WHY did you do this to me? You were supposed to be my friend. You will never understand the emotional toll I go through each time everyone asks me why I walked out on the project. Do you know how ridiculous I felt when the party began and all the crowd was staring at me and wondering why I remained out on the street? Do you know how difficult it was for me not to scream and cry out and ask you WHY did you do this to me? You were supposed to be my friend. You will never understand the emotional toll I go through each time everyone asks me why I walked out on the project. 

 

      And when I had the opportunity to speak to you in private, your response was “this is business”. You needed to be able to count on me to be there. Well, hadn’t I been…FOR YEARS? Hadn’t I been the one to never sass you or make your work even harder? Hadn’t I been the one to give up doing so many other things while others called in sick or just simply lied about the reason they couldn’t show up. I never yelled at you, or disrespected you; I never had a temper-tantrum and made everyone stop what they were doing. If I sound angry….I AM!!! 

     You discounted me as if I never mattered, as if I never had anything to do with any of the progress you made. Not even a thank you. I am so damn confused and your explanation only confuses me more. We had so many conversations about future plans – you always made me think I was a part of them. That, I DID NOT imagine. And sure, in the end you gave me an invitation to come in…but now I only feel like an outsider. You have hurt me more than you will ever know.

     But I’ll live. I hope your work is appreciated around the world. I hope you achieve your dream. I truly wish you the best. But next time, consult with someone before you allow them to partake in such a great task with you. Be more honest. That way, you won’t hurt a friend. 

     So quietly, I retreat. Perhaps I will seek out my own crew and construct the house of my dreams. I know that you will do wonderful things. I remain faithful in that. Thank you for allowing me to have tagged along up to now. 

     Good luck and God Bless You on the remainder of your journey. I will continue to admire and support you from a distance, my friend.

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A Letter To Friends

This is something I wrote just over a week ago. I had so much positive feedback from my friends, I decided to include it here:

You know…I love my babies so much. I can’t imagine ever losing any one of my 3 little angels. I don’t know if I would be capable of keeping my sanity in tact. I’d like to share this with you in the hopes that it may move you to help the following cause (or which ever cause motivates you).

 

21 years ago is a LONG TIME AGO, so my details may be a little rusty (or a lot). I entered the 5th grade at a new school, Allen Elementary. I knew absolutely no one with the exception of my younger sister, Kristi, who was one grade behind me. We had moved to a new house during the summer vacation. For the first time, we would be attending school with children we hadn’t grown up with and known most of our lives.

 

For most children, transitions like this can be daunting. For me, it was a nightmare.

 

I was only 3 1/2 years old when I nearly lost my life. This is a story I have attempted to write numerous times over the last decade. It’s a story that hardly anyone in my life knows anything about. Truth be told, it scares me to tell it. I am still not ready, but I need you to understand a little more about me before I carry on with my original intention.

 

Sometime close to midnight, in September of 1980, I woke and wandered into the living room. My mother lay sleeping on the couch, waiting for my father to get home. He was a custodian at a local school. I don’t remember taking the cigarette lighter that lay upon the tabletop. I only remember what came next.

 

Back in my room, I began to flick the lighter – trying to light it. In those times, there were no such things as “child-proof” lighters. On my 3rd or 4th attempt, I not only produced a flame from the device – to my surprise a fireball erupted. That startled me. My natural reaction was to drop it and in doing so, I ignited my pajamas. This was also during an era when laws did not exist to enforce flame retardancy in children’s clothing.

 

I was completely engulfed in flames, yet I never even screamed. Somehow, instinct (an angel) tapped on my mother’s shoulder. She woke, heard nothing, saw nothing…but she knew something was wrong. She came to my bedroom to see that I was on fire. I remember how she grabbed the bed sheets and scooped me up into her arms. She didn’t let go until she put out the flames. I remember being inside of that sheet and not knowing what was happening to me. I didn’t understand.

 

When Mom was certain that she had extinguished the fire, she put me down and ordered me not to move. I don’t know if she then said to me or to herself: “I’ve got to call the hospital”. It was only then that I began to cry. Amazingly, I was able to move my charred body and follow her to her bedroom. I begged her not to take me to the hospital. I was crying and pleading. By the grace of God, we only lived 2 blocks away from the nearest firehouse. The 911 dispatcher sent the firemen instead of the paramedics. This is the reason I am here today. I would have never made it had we needed to wait for an ambulance to arrive 15 to 20 minutes later.

 

I remember being in the ambulance. I remember the doctors & nurses rushing me down the hospital hallways poking and prodding me…by this time I was so swollen, it was almost impossible to breath. I cried out for my mother but they had left her behind in the trauma waiting room. I remember being transported to the operating table and at that point, it is mostly a blur.

 

After many hours of emergency surgery, my mother was told I would not survive the night.

 

Somehow, I managed to not only make it through that night, but the following 3 months in the hospital. It was a delicate situation and weeks passed before the doctors finally felt I had a real chance at survival. Most people don’t realize that surviving the burn is not just about surviving the skin loss and the agonizing pain that ensues. The true battle is against infection. The common bacteria that one comes into contact with on a daily basis can kill a burn patient within hours. Everything – bedding, silverware, toys and even mom- had to be sanitized before being permitted into my tented room. I underwent many procedures during those months and I hated my doctor for shaving off my hair. Someday, I will talk more of that experience.

 

Just under a year later when I started school, I was almost walking straight again. I was able to make friends quickly despite the severe scarring that marked 45% of my body. The kids almost never teased me. I suppose because at the tender age of 5 and 6, children are still very innocent and not yet keen to “differences”. I grew up with familiar faces grade to grade. Occasionally there was a student who felt the need to make fun of me. I’ll never forget the time the Principal had to get involved and quiet the rumors that I had HIV (and by the way – this was before the world really knew about AIDS or Ryan White). Many kids stopped playing with me for fear that I was contagious and that as a result, they would end up looking like me and eventually die. Thankfully, most of  these kids were quieted by peer pressure. I had my own little club of bodyguards. Children who had grown up with me and would defend me at a moment’s notice.

 

And then there was Kristi. One time she discovered that an older boy was messing with me. She and her little 6-year-old self chased him all over the playground, threatening to clobber him. He quickly figured out that she wasn’t going to relent. He was nearly out of breath when he finally shouted his apologies for fear of what would happen had she got a hold of him.

 

This is why attending a new school was the scariest thing for me to do. To complicate the matter, I had just undergone surgery which required me to wear a pressure garment. A mask. There was 0% …possibility of me blending in with my new schoolmates.

 

And here is where I transition to Shalon’s story…

 

Shalon was in my 5th grade class. She was fairly popular and most certainly a pretty young thing. We ended up being schoolmates for the next several years. At the end of my freshman term, I elected to switch high schools and that was when are paths separated.

 

I don’t remember exactly when I started to notice the protrusion that began to appear on her chin. In fact, it may have always been there. What I do know is that malformation really began to grow.

 

At this point, Shalon – I apologize if any of my details are incorrect. Again, this is told only from my perspective. Someday we’ll have to sit down together so that you can help me fill in the blanks – though I have been slowly making my way through your website and blog entries – not easy to do as a mother of two in diapers and one surviving kindergarten :)…I never have time for phone conversations, so reading is a luxury often enjoyed at 2am between “feedings”, LOL.

 

I noticed that Shalon becoming slightly withdrawn as the mass in her chin began to expand. Always afraid to ask her outright what it was that was deforming her face, I only knew that it must’ve been difficult for her to adjust. I imagined that it must have been very hard for such a popular girl to have to explain over and over what was occurring to her face. By this point, it was impossible to miss the irregularity of her chin and jaw line.

 

I remember how Shalon learned to “hide” her deformity in photos. Often posing with her head slightly tilted, her arm bent and her left fist resting upon that spot. I was sometimes envious of her ability to pose like that. I simply had no way to cover the ugly scars that marred nearly my entire face.

 

After several horrific run-in’s with bullies and bad experiences even with those who were within my circle of “friends”…I began to have issues with social anxiety. I put on a strong front and I most certainly relied on a handful of successful coping mechanisms. But I also retreated, turned down invitations to form new friendships; I dared not do the activities I would have loved to participate in for fear of being in a new group situation; fear that I would not be accepted; and fear that I would be ridiculed beyond belief.

 

I remember that occasionally Shalon was not permitted to participate in certain activities, yet she didn’t seem to let that affect her. While it seemed to me that initially it was a real struggle, Shalon seemed to adjust socially and even played some sports and was a cheerleader. From afar, I always admired her ability to stand right in the center of the crowd and not be afraid to draw attention to herself. Shalon also had her crew of warrior soldiers – friends who seemed to have her back at every turn.
 

It has probably been 13 years or more since I last saw Shalon in person. I had often wondered about her and how she turned out. Recently, our paths have crossed again, and now the mystery is solved.

 

It has only been a few months since I finally learned what that terrible growth was (is). Shalon has suffered from a facial AVM (Arteriovenous Malformation). Apparently it took most of her childhood for her infirmity to be diagnosed. It is a rare condition and I won’t insult Shalon or other AVM survivors with trying too hard to explain it as I am still grasping the terms myself. Simply put, it is a condition one is born with. A developmental error that occurs in the blood vessels that eventually becomes a tangled, swollen web of problems. This condition causes life-threatening bleeds and is often very painful. Little is known about AVM as it is considered to be a “new” medical problem.

 

Through Shalon’s courageous journey, she has endured many of these “bleeds”, stares from rude strangers, and a lifetime of self-doubt and moments of insecurity. Shalon…we have so much more in common then you may have ever known. She has begun to share her journey and to reach out not only to those who suffer from AVM’s but also to those who have never heard of the illness.

 

This is how I learned of Baby Nathan. A sweet little boy diagnosed with an AVM of the brain. In early December, his war against the mass within his brain tissue began to look bleak . After several strokes and brain injuries due to clotting of his vessels, the doctors feared that even if he survived, the damage would change him forever. There had been moments of hope over these last few weeks…however, just yesterday, Baby Nathan, also known as “The Miracle Baby”, succumbed to his AVM. He died in the loving arms of his mother and father. He was just shy of his first birthday.

 

Go forth Baby Nathan and rest. I never knew you in person, and only saw your angelic smile in the pictures your family has shared with the world. May your story help change the lives of others, the lives of us all. Rest in Peace Sweet Heart – know that you will not be Forgotten.

 

Friends, I invite you to read more about Shalon and others like her through the AVM Survivors website. Most of all, I invite you to read of Dear Little Nathan. If your heart aches as mine did reading his story, I hope that you may feel inspired and find a way to give; to prevent other young families from losing their little soldiers too soon.

 

We all lead hectic and often times troublesome lives. Thankfully, we don’t all have the daily agony or suffering that the chosen few endure.

 

I thank you for your time and I beg your forgiveness if I’ve overlooked any grammatical errors. I really did try to write from the heart on this and therefore I ignored Miss Little Perfection within me and chose not to go over it a thousand times…for that reason and because lil Amber just spilled a bowl of soup all over the floor (insert comic relief, yes…it’s ok to giggle).

Blessings to you all – in memory of

Nathan James Avila Andaya

 January 25, 2008 – January 11, 2009

See pictures and videos of The Miracle Baby and read his story:
http://www.avmsurvivors.org/profiles/blog/show?id=1543517%3ABlogPost%3A110403
http://www.nathanj125.com/mystory1.html

Shalon’s Website:  http://shalonavm.blogspot.com/

AVM Survivors Website:   http://www.avmsurvivors.org

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Hello world!

Ok, here I go. I’ve just set up a blog on Word Press…another link in the long chain of opportunities I’ve explored the last two months. Night and day I have sat at this computer desperately trying to find a way; I am hoping this is the avenue I need to travel.

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