I would like to share our story with you. My wish is to help you see that you are not alone and to offer you a little bit of hope and comfort. Nothing I say, or anyone for that matter, will ever make things completely OK and chances are there’s a sense of uncertainty and fear that will never leave you. But, you can work toward improving your and your child’s life by arming yourself with the knowledge and information that can make all the difference.
It is true that when a child with special needs enters your world, your existence is eternally altered. You have choices you must make however: to crumble or to survive, to hide behind stigmatic shame or to go forward proudly holding your child’s hand. For your child’s sake, the choices you must make are obvious and they must be made without hesitation. Always remember, you are not the victim! This is not about your own personal insecurities or shortcomings. This is about your child being the recipient of unfortunate circumstances and you are to shepherd him/her through a rough terrain that can only get smoother with your tireless and dedicated efforts. So check any pride, guilt or shame at the door! You are entitled to mourn and you can and should scream and cry at the top of your lungs for as long as you need to, because after all, it is a loss, a loss of dreams, and possibly lifelong plans and expectations…But then you must come to terms with your reality and reach acceptance of your circumstances, embrace them, let go of any perceived stigmas, re-group and arm yourself with the tools to go be your child’s biggest supporter and advocate! NO EXCUSES!
I am all too familiar with the heartache, the despair, the sadness and the overwhelming feeling of loneliness… I know what it feels like to believe no one can possibly understand. But, someone does…those of us who are in that journey right beside you. This is the reason why I became a special education attorney. I knew that what I did for my son I could do for the children of so many families who were lost and unsure where to turn to for help. I knew these families could relate to my experience and draw benefit from it.
My life is divided in two phases, life before Brandon and life after Brandon. For parents of a child with dire health issues, there is always a date that is indelibly etched in their mind…the day that changed their lives forever. For me, that was a sunny but breezy Thursday afternoon in October of 2002, 2 days before my 32nd birthday. Brandon was born almost 8 weeks prior, on August 21st, a perfectly normal, healthy baby boy…or so it appeared. On the day of his birth my world was complete. I was living the fairy tale all little girls dream of, I became a lawyer, married my prince charming, bought a cozy and beautiful little house and designed the perfect, beautiful nursery and now we were ready to fill it with perfect, beautiful children…and live happily ever after. I had not for one split second pondered the thought that something could go wrong. Then something did. This imperfect little angel entered my perfect world and shattered my story book reality. It was an emotional and heart wrenching revolution that for a brief period emptied my soul of dreams and illusions and filled it with utter panic and hopelessness. But in time, strength resurfaced, the sadness dissipated and hopes returned.
I suspected there was something wrong with my child but hoped that I was just being a hyper-vigilant, first time mom. Having said that, my advice to you is to ALWAYS listen to your intuition. Initially, I ignored mine. We noticed odd jerky movements that Brandon was experiencing intermittently. Our pediatrician told us that the funny little movements were inconsequential, something called the Moro Reflex. I looked it up and sure enough it seemed a perfectly logical explanation, as the description I read matched that of what Brandon was exhibiting. My fear was only quelled temporarily. I very quickly began to feel unsettled once again as the movements continued and seemed to increase. Still, for a few days I managed to ignore the resonating voice in my head that said something was very wrong. I wanted so desperately to believe that our pediatrician was right and that I was just being a hypersensitive, paranoid and inexperienced mom. Then suddenly a few nights later in the wee hours of the morning the “reflexes” increased, accompanied by eye rolling and an impressionable grunting sound. Brandon’s entire body folded in half in a “jack-knife” effect over and over. We instinctively ran for the video camera and videotaped Brandon during these repeated ominous events knowing in our hearts our world was about to change.
I will never forget the daunting look on our pediatrician’s face when she saw the video. She seemed puzzled and alarmed by what this could be and told us it seemed he was having some type of seizure. Then right there on her examination table Brandon began having what we would soon learn were indeed seizures. But we had yet to learn these were the most menacing seizures to strike an infant. Our amazing pediatrician made all the requisite phone calls and arrangements, within 30 minutes later we arrived at the Pediatric Unit at Cedars Sinai Hospital where they were waiting for us and admitted Brandon immediately for testing.
We were told that the Chief of Pediatric Neurology would not be there for a few hours but that we should brace ourselves for the battery of tests that she had ordered. Brandon was poked, probed and prodded in more ways than any baby should ever have to be. But a number of tests needed to be conducted as a few possibilities needed to be ruled out. One of these was that of the seizures being caused by a tumor that typically grows behind the eye leading to blindness. We were told the test results were instant and we would have an answer shortly after. My husband and I sat silently on the floor of the hall way outside the MRI room staring and waiting for the door to open with the news. The fear we felt during that brief time was inexpressible…We were emotionally paralyzed, holding tightly to each other’s hands. When the doors to the room where Brandon was being tested abruptly opened, I did not think I could bear to face what was on the other side. He asked us to come in and as I took the steps toward that room my feet felt like two cement blocks. We were told the test was negative and tears of relief and fear ran down my face as they also told us the many other ominous possibilities. On to the next test.
In the meantime, the seizures continued and seemed to increase in quantity. It tore our hearts to see our little baby in such agony. This was too much for a new mom, for any mom, any parent to withstand. Desperation, fear and panic had now completely overtaken my thoughts. It was the end of my fairytale.
On that Thursday evening in October, I was introduced to two words that, at first glance, appeared seemingly harmless: INFANTILE SPASMS. The Chief of Pediatric Neurology walked in to examine Brandon for the first time. Brandon was experiencing a seizure and within seconds she said, “I know what this is.” She told us she could not expound further until all of the tests results were in. She described them as uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin (symptomatic seizures, meaning they were a symptom of an underlying condition), but the others have had no apparent injury and have been developing normally (the “cryptogenic” type). We would wait for the test results to reveal whether Brandon’s seizures were one or the other with Brandon’s odds of recovery greatly depending on the answer.
In the interim, Brandon was administered various standard anti-seizure medications but we were told that in all likelihood they would not be effective as these types of seizures often were next to impossible to treat. Not possible to treat? What did that mean? My heart seemed to stop and again I could not breathe.
I had a nurse Google the term “Infantile Spasms” and print out her findings. As it turned out these “spasms” that my baby was experiencing, upwards of 60 times per day, were the most catastrophic types of seizures and the odds of beating their terrible effect on the brain were very, very discouraging. I don’t recall much about the time immediately after I read the findings on Google, just that certain words jumped out of the page at me: hemiplegic, paralysis, mental retardation, severe developmental delay, cerebral palsy, hemispheretocmy, atrophy, weak muscle tone, death. The room spun and all of the voices around me became muffled. I felt light headed and devoid of any feeling at that moment, just pure numbness and absolute emptiness. When I finally slipped out of my emotional coma I finally burst into tears uncontrollably and all I could do in that instant was lift my beautiful baby from his hospital bed and pray incessantly. I thought I would never stop crying. But somehow I did…and an inexplicable strength suddenly enveloped me. I don’t know if it was God or the innate fighting instinct that a mother is equipped with the second her child is born and it just kicks in when need be. This was my child and I would care for and love and protect him no matter what test results were to reveal. So on Saturday we went home and we waited…
Once the seizures were identified the next step was to determine what was causing them. We prayed for the “cryptogenic” type of seizure, which meant that Brandon stood a better chance of progress and recovery. After what seemed like endless tests, including MRIs, Cat scans, EEGs, Spinal taps, video telemetry, and the puncturing of just about every vein in his body, it was discovered that Brandon’s brain was malformed. The left side of his cerebral cortex presented with a defect (packegirae) that caused the infantile spasm seizures. And unless those seizures were somehow controlled, the odds for any semblance of a normal life were very discouraging and terrifying at the same time. The MRI revealed that our baby had a condition called Focal Cortical Dysplasia, a type of malformation on the cortex. His seizures were indeed symptomatic…and the next step could involve brain surgery.
The prognosis was not good. We were told to expect mental retardation, developmental delays, more seizures, the possibility of never walking or talking…and the icing on the cake…he would in all likelihood need a hemispherectomy; in laymen’s terms, the removal of half of his brain. There is no adequate or effective way in the English language, or any language I suspect, to describe the anger and despair and the immeasurable fear we felt for our child. But this was our moment of truth. It was time to fight for our kid and somehow dismiss the overwhelming emotions that had us almost paralyzed with terror…
I began to research immediately and we were insistent on taking our child to the best facility in the world that handled these types of disorders. As it turned out we did not need to travel far as UCLA was in our own backyard. But, a miracle happened. Brandon’s seizures responded remarkably to the medication prescribed, ACTH, a steroid with menacing side effects (a 50/50 chance of effectiveness was given) and just like that, his infantile spasms vanished never to return. Our little boy had a chance to develop now…and little by little, step by step, albeit the first he took was at the age of 3, he continues to shock and impress us with his progress…Yes, at his own pace, but a steady one nonetheless. And it’s all we could have asked for…Our own personal little miracle in the face of incredibly adverse conditions.
So as it turned out , we created our own, slightly revised version of happily ever after; one where our son would not need to have half of his brain removed. We replaced mommy and me classes with the UCLA Early Intervention program and rather than Gymboree or My Gym we adapted to OT, PT and Speech and Language service providers…and we set out on a mission to make sure our child’s every need was met in order to make his life one of quality and value.
It’s been a long and bumpy road of heartache and blessings. In the end I am a better person, a better mother, a better friend and a better lawyer. I value and appreciate every minute with Brandon and I do not for a second take for granted his tiniest of accomplishments.
We were immensely lucky in that Brandon’s seizures stopped and his brain remains intact. Many children with his diagnosis are not nearly as fortunate. He is a happy and amazing little kid enjoying all the fun an 9 year old should. Yes, he has a one-on-one aide that attends school with him and an inclusion teacher, and PT, OT, APE and speech therapy weekly…but he is educated with typical peers that provide valuable lessons for him daily. Yes he walks a little funny and does not have great use of his right hand and acts a little odd but he is loved and cherished by his friends. He is still developmentally delayed and we suspect he always will be but he is keeping up and we are beyond words proud…and grateful. We fully accept our child for who he is…knowing how much more he can be with the right tools and support.
Brandon had a breakthrough complex partial seizure on January 11, 2011 as he had been taken off of his meds for a bit. Since he had been seizure free for 5.5 years, something that had never been expected, his neurologist wanted to try no meds and see what came of it. Suffice it to say he will never be off the meds again. If it ain’t broke why fix it right?? He is back on the meds, responding well and back on track, a joyful little boy living the best life he can with two parents that will always do everything within their power to ensure that it continues that way…no stone unturned.
My hope is that you find the same strength to fight for your child and make it your mission to make sure everything possible is done to improve his/her existence on this earth. Only you can set the stage to ensure that his or her potential is optimized.
Life is not ideal and not what we once dreamed for our son. But we stopped asking the proverbial “why” long ago and we have fully accepted OUR reality creating our own version of “normal” …and it is one we have fully embraced. And it is OK.