My hero, my son.  By n.f.  Brian's story began at 2:04 in the evening on Labor Day    1993, after an eight month long hard pregnancy that           included an appendectomy, months of pre-term labor and  a month long stay in the hospital with pre-eclampsia. He    was born C-section because he was breech and coming    first {he has a twin sister}. I was lying there waiting to        hear the first cry of my first born, so terrified that I             wouldn't. Instead I heard my soon to be husband exclaim   "Oh my God! What's wrong with his head?" One doctor   yanked him away to the other side of the room while the    anesthesiologist leaned over me, I was trying so hard to     sit or see over the sheet, and assured me my baby was      fine. Three minutes later his sister was born. And soon       after both babies were brought up close to the side of the   bed each bundled in a blue paper blanket and a knit cap.   I only got a quick glance before they were whisked off. I  didn't even get to hold them. It was well after midnight       before I was moved out of recovery and into a room.        Later still before my babies were wheeled in for me to       hold. Before I could pick up my son the nurse cautioned    me that Brian's head was a little misshaped and that the      doctor had said it was only birth trauma and that it would   correct itself in a few weeks. I picked him up, looked in     his wise little eyes and fell in love. Then I took off his cap.  His head was not a little misshaped it was badly                 misshaped. Sort of hatchet shaped with his face on the       wider end. He could only lay his head on one side or the    other. But they promised me it would be okay and he        was such a wonderful,tiny thing.                        It was two months later at home when he had his first    grand mal seizure and our world changed again. His head  still had not gotten any better and he could not turn it side  to side without help. Brian was admitted to the hospital      and endured many tests including a cat scan and an            mri.They didn't discover the cause of the seizures but they  did discover what made his head the way it was.               Craniosynostosis. It meant that a baby's head should         have soft spots that allow the head to pass through the       birth canal then grow with the brain. But Brian didn't have  any soft spots. His skull was closed and putting pressure    on his tiny brain. He was put on medicine for the seizures   and a date was set for surgery.     A month later in early December right after he had           turned three months old he underwent a cranial vault          remodeling. A "path" was shaved from one ear to the         other {a considerate nurse saved the hair a baggie for        me} and an incision was made. Part of his skull was          removed, reshaped and put back. He required two            transfusions. The operation took many hours. He spent      the next few days in ICU under very heavy sedation to      keep him from moving his head until they removed the       staples. Days later he left the hospital wearing a smile         and a special helmet to protect his head until his head         had healed. My son had made it and things must be           going better.       But there were still more battles ahead. By six months   old he was back in the hospital. The seizures were getting  worse not better as promised. More tests and another       mri.This time the diagnosis was Hydrocephalus also           known as water on the brain. Thank God this cleared up   before he had to have a shunt put in. Still the seizures         increased. He was put on stronger medication and had      his third mri.He was also diagnosed with asthma. For the   next year he battled constant respiratory and ear                infections. More medications were added and he               underwent minor surgery to place P.E.tubes in his              eardrums. An operation that would be repeated three        times before his fourth birthday. He developed                  Reflux.When he was laid on his back he automatically put  his arms out and rolled up the sleeves. To him laying          down meant getting stuck with needles. But Brian was a    happy and loving.   By eighteen months when Brian's baby brother was born  he still couldn't walk across the floor without falling and      his speech was garbled. He thought his brother had been   born just for him. We took Brian to a developmental         psychologist and he was tested. He had mild to moderate developmental and learning disabilities. He started a           special pre school where he got physical/occupational and speech therapies. Brian did what he always did. He fought his difficulties and brightened everyone else's day.               Through it all he had a ready laugh and smile, despite his   special needs he was very bright and ready to learn.    At four things changed again when the kid's father/my      husband walked away.It wouldn't have mattered except    for the kids,adults get over it kids don't. A year later he     entered kindergarten and was retested. His IQ was           changed from mild retardation to the low end of normal.    His teacher explained he was very task committed. She     said that means that he pays attention to every detail and    becomes so involved in what he is doing that it is hard for  him to switch to doing something else. And he was            declared disabled by the state. Being 'disabled' meant he   was assured insurance through Medicaid. Otherwise his     medical bills would overwhelm me since every insurance    company turned him down. At this time I cannot find an     insurance company that will take any child that has had a   cranial vault remodeling.     Brian is six now. He still has epilepsy, asthma ,ADD      and reflux.He uncomplainingly takes nine different               medications a day [most several times a day]. He is in first grade and trying hard . Last year he was on the honor roll  but this year he is failing even though he still works just as  hard.His favorite things are drawing and writing endless     lists of words. If he doesn't know a word he will ask how  it is spelled but after writing it a few times he will                remember it even weeks afterwards. He both loves and     laughs openly. And always he teaches me about strength    and love and courage. Brian may never accomplish all the  things most parents envision for their children's futures or   maybe he will find a way. But Brian is already my hero.    {This is a song I wrote for my kids and I think it says more than I could ever explain. It is called Angel.}        You are my strength        You are my hero       You opened a whole new world to me       You are my strength       You are my hero       I want you to know how special you will always be      You were born into this world       but not given much of a chance       I watched you fight over and over       for the life others take for granted       They always called you special       but they never really knew       just how very well       that word applies to you      You are my strength      You are my hero      You opened a new world for me      You are my strength      You are my hero      I want you to know just what you mean to me     I watched you as you struggled     and it tears me apart always     To see how you laughed and smiled     and just accepted the grief and pain     But it showed me something     though this truth wasn't brand new    That inside of you is a beautiful spirit    And you have enduring courage too    You are my strength    You are my hero     You changed the world for me     You are my strength    You are my hero   You mean so much to me    I know sometimes it's very hard    and it just might always be   You've shown most things are possible   to those who work for it and believe   You are my strength   You are my hero   You changed life for me   You are my strength   You are my hero   And you will always be.