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:
Shalon’s Website: http://shalonavm.blogspot.com/
AVM Survivors Website: http://www.avmsurvivors.org