Help Mareena
Her Story (as published in the Sun News 06/18/2015) (OC Register story 12/30/2012)
To bring another life into this world is one of the most amazing moments an individual can ever experience. Regardless of where in the world you live, what culture you come from, or what language you speak, the miracle of life is so precious that it captivates us all. It is a universal truth that being a parent is the greatest gift one can ever receive. There is no amount of money or riches that can produce the same amount of endorphins than the love a parent has for their child. Words can not begin to describe what parents feel when first casting eyes on their children, and my feeble attempt proves my very point.
The sound of their first whimper, their look of confusion yet astonishment, the reality that a lit bit of mom and little bit of dad is finally here. The feeling is unparalleled. At the time of birth, even on a subconscious level, life itself flashes before your eyes, not like in death, but rather in hope. Hope that one day this child will grow to be a productive member of society. Hope that one day this child will be a future life saver, a leader, a protector of sorts, a caring spirit, a good friend to a friend in need, a brother, a sister, a student or even just a plain old good human being.
As parents you worry about the cruel challenges that life will inevitably present. You question yourself over your own merits. You wonder if you possess the strength, will and power it takes to raise such a precious gift. Then comes the moment you realize you haven’t even been in the same room with your child for 20 minutes and your worried about 20 years down the line. The point is, as parents we all want what is best for our children, and what we define as “best” is different for all of us. “Best” for some may be that their son become the greatest baseball player to ever live. “Best” for others may be that their daughter grow up to be a selfless, altruistic caring human being.
For my wife and I “best”, at this moment in our lives, is that our daughter, Mareena Flores, gets the proper education she so direly needs. On April 15, 2007 we were honored with being able to call ourselves her parents. Eight months after her birth we witnessed her first seizure. For the subsequent five years our daughter would go on to have anywhere from 5 to 20 seizures per day. In those trying years my family and I, including our young son, Dean Flores, spent countless hours in and out of hospitals. No one could tell us what was wrong. We took her to some of the best hospitals this country has to offer, and still….nothing. At one point her seizures were temporarily controlled, but at a great sacrifice. She was so heavily medicated that Christmas to a 4 year old child consisted of sleeping more than half the day and not wanting to open gifts. Too tired and too medicated to be aware of the world that engulfed her. What four year-old does not want to open a Christmas or birthday gift? At this point all my wife and I wanted was a glimmer of the child that we gave birth to. Our idea of “best” back then was just making sure she was not going to die. At her worst her seizures would cause her to stop breathing for up to a minute or more. Her eyelids, fingernails and lips would turn a blueberry blue. Her stomach would come to a halt and would stand as still as a cutting board, lifeless. Every seizure brought us a step closer to death.
In 2011 we hit rock bottom and felt like we had nowhere to turn. People would give their condolences including our own close family members but even they could not begin to understand the daily battles this little girl had to fight. To witness your daughter near death on a daily basis is something I would not wish for even the greatest of foes. I finally broke down and asked a client if he could help us. I had managed money for a number of doctors over the prior 11 years and had never asked for any personal favors, but this was life and death for our daughter. He said he could help and introduced us to a doctor that single handedly saved not only her life, but our own. Our family was like the walking dead, with sleepless nights and stress levels that could kill the strongest of men. Our salvation had finally come. On May 15th of 2012 after having been spent over three weeks in the hospital and our Mareena electronically chained to a wall, it was determined that she would undergo brain surgery. As a parent this is the last thing you ever want to hear. As a parent you hurt when your child falls and scrapes his knees or your daughter falls ill with a fever. Brian surgery? I could not fathom it, had it not been for the beautiful smile on our daughter’s face or the God given motherly strength of my beautiful wife, I would have said “No”. To have to hear that announcement was gut wrenching. I remember the fear of death pressing firmly against my heart. We were speechless but hopeful. When they carted her away we wondered if that was the last we would ever see of her, and if we did, if she would recall who we were. A feeling I hope you readers never ever have to experience.
Six hours later and with 25% of her brain removed (the entire left temporal lobe) the surgeon walked into the children’s hospital bright and cheery colored waiting room, which I’m now convinced we ironically filled with a nervous grayish silence. “She’s opened her eyes, and is in recovery”. We all jumped, hugged, and cried. I am also fairly certain the doctor thought he was going to be tackled. The room turned bright again, suddenly I could see the toys that had been sitting on the floor all along. Suddenly there was hope again. In that instance, we defined a new “best”; to have our daughter back.
It’s been just over three years since that life-saving surgery and she has not had a seizure since. She is filled with so much life. I had read and heard about miracles but had not really believed until now. Today Christmas gifts are devoured, birthdays are celebrated for a week, invitations to sleepovers and play dates are the norm. The laugher and smile that radiates from this little angel brightens everyone’s life even on the gloomiest of days. We are a family again. We are almost complete again. I write “almost” because she is now being asked to fight another unnecessary battle. This time it’s a legal battle. One in which her school district has the power and authority to end today.
The Los Alamitos school district is denying her of the appropriate services she urgently needs. Time is of the essence, as second grade does not get any easier than first, nor does third or fourth grade. They claim she has all they can possibly provide, yet our necessary army of medical professionals are urging us to fight for more, because she deserves, as all children do, a fighting chance. She simply needs services that are appropriate for her needs! We have been extremely patient with the district over the past three years but enough is enough. We have personally used our own resources and continue to do so while she is under our care. We are simply requesting the same from the district while she is under their care. It is an inherent legal right, it’s the law according to FAPE, IDEA and No Child Left Behind. The resources are already there from State and Federal funds specifically allocated to those with special education needs.
Recently, they retained an attorney to try and stop us from requesting the services Mareena requires. She is still recovering and will probably do so for the next few years. She merits a fighting chance. How much more does this poor child have to endure? Our family is not asking for the world, yet this district is refusing to lend an ear or see what she is truly capable of doing and ultimately becoming. We are purely defining our new “best” today. The Los Alamitos school district moto reads “Igniting Unlimited Possibilities” I think it’s time they realize that includes ALL children, even those born with disabilities.
