January 23rd 2006 I walked into Vanderbilt Children’s Hospital in Nashville TN to have a scheduled C- Section. It was not a procedure I desired. I had given birth to my three previous children naturally and wished that it could have been an option this day however, today was different; today I was giving birth to my youngest son Anthony Joseph whom we knew may not live to leave the hospital. You see, Anthony had been diagnosed with Spina Bifida, Hydrocephalus and Arnold Chiari Malformation of the brain at my 20 week ultrasound. My precious baby boy would be brought into this world facing immediate surgeries in his fight to live. He was the hurricane that forever changed the direction of my life and who it was I would become.
I cannot express to you the terror you feel when you look at your newborn child, perfect in every way, except for an opening on his back that is 6 inches long. It was as if someone had taken a hatchet and spliced him open. Any mother can imagine the agony that is felt when you cannot hold him when he is crying. He is too fragile. He is weak. He is your flesh and blood fighting to survive and all you can do is look at him through incubator walls. Those weeks in the hospital were exhausting mentally, emotionally and physically. I had no idea what his life would require of me. I was so naive. I had been a great mom to my three other babies but I had zero idea of how this new bundle was going to rock my world and shape my life.
Fast forward twelve years and the young man above looks inquisitive at me after having had his shower; I know he is already contemplating mischief to engage in. His journey began with the aforementioned issues and today he also has severe Autism, Expressive Language Disorder, Sensory Integration Disorder, Paraplegia, Neurogenic Bowels and Bladder, Scoliosis, Severe Feeding Issues and the list goes on and on. We begin our day with a shower and Cone Enema bowel cleanse so that he does not stool on himself. This keeps him cleaned out for up to 48 hours. He has a sterile catheterization of his bladder every 4 hours to empty it warding off infections that have almost ended his life twice. The infections were severe each time causing Sepsis that resulted in 7 blood transfusions and weeks in the hospital. He is fed every four hours 4 times a day by a Mik-Key button that was surgically placed in his abdomen 5 years ago. Anthony does not eat much of anything by mouth. This is a serious yet typical issue many parents of Autistic children face. Anthony became severely malnourished when he became old enough to realize that even when we force fed him, he did not have to swallow and would spit it out.
There is so much more to his day. He is homeschooled to prevent illness and increase his ability to communicate as well as to learn how to control himself so that he does not injure himself or others. Autism is frustrating. Anthony understands what is being said around him, but he can communicate so little of what is on his mind. At one time he never spoke. He has times when he will bash his face into the floor or punch himself in the nose or lash out. It was once very frequent but since I began homeschooling him, I discovered that these episodes are a result of the frustration of not being heard, understood or able to communicate thoughts. I have developed interventions and cue words that have helped myself and all others to listen carefully to him and acknowledge that we hear him even if we do not always understand the first time what it is he is trying to say. With prompts, nine times out of ten he finds a way to tell us whatever he wants and all is happy in Anthony’s World.
Twelve years ago when I walked in that hospital I knew I was facing a deep abyss of unknown however I never contemplated that the woman who wanted to be a psychologist and obtained those degrees would eventually get a second graduate degree in Advanced Special Education and Severe Behaviors and go on to teach Special Education. I never dreamed I would become a fierce Parent Advocate teaching others how to ensure their loved ones get all it is they are entitled. I did not contemplate using my love of written word, making a career of it so that I could work from home simultaneously hiring, training and managing staff to assist me in caring for him. Each day I homeschool him and research anything that will increase his quality of life. I never knew that being an Army Veteran at the time of his birth that HE would be the one thing that made me the strongest. That the battles I fight with him, for him and others would far exceed those that I defended as a soldier. I had always stated that Basic Training and service to my country was what had made the biggest difference in my life until Anthony came crashing into it. The day he was born I became a soldier of Love, Endurance,Faith,Compassion,Empathy and Justice. I became a special needs momma. My destiny was forever changed for the better. There is not a day that goes by that I do not have to play defensively on his behalf as well as offensively strategize to give him the best life possible. I no longer fear anything. He made me a better woman. Happy Birthday my sweet son. I do not know how many years God will allow you to remain in this world with me but I will cherish each and every adventurous moment of it as you continue to grow with me into whom it is we are intended to become.
Stormie Baez a.k.a. Moxie Rowe