Allow me to share our story with you. My sincerest wish is to help you see that you are not alone in what it can at times be an overwhelming and treacherous journey. I tell you my story in an attempt to offer you a little bit of hope and relief in the comfort of knowing that all is not hopeless or lost. Nothing I or anyone can say or do will ever make your reality completely OK and chances are there is a sense of uncertainty and fear that will never leave you. But you can work toward meaningfully improving your, your child’s and your family’s lives by arming yourself with the critical knowledge and valuable information that can make all the difference in this dauting path. I promise. I have and continue to walk it with you…
It is an undeniable reality that when a child with special needs enters your world your existence is eternally transformed. 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 no matter what the challenge or disability. Your child is as equally valuable as any child despite his/her differences. Know that first and foremost. For your child’s sake, the choices you must make are obvious and they must be made without hesitation. And always remember, you are not the victim!
“I created you, but you recreated me.”
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 unwaveringly shepherd him/her through a rough terrain that can only get smoother with your tireless and dedicated efforts. But while you are to 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 and whenever you need to – We are entitled to fall apart from time to time because, after all, you may be suffering from a loss that can and should be mourned – sometimes it is a loss of dreams, and possibly lifelong plans and expectations…It is OK to mourn the child you thought you had in order to come to full acceptance of the child he/she is instead. But you must come to terms with your reality and reach acceptance of your circumstances, embrace them, let go of any perceived stigmas, and always re-group after an emotional set back. Next, you reset and arm yourself with the tools to go be your child’s biggest supporter and advocate! NO EXCUSES! (And I am here to help whenever you need me).
I am all too familiar with the heartache, the despair, the sadness and the overwhelming feeling of hopelessness…I know what it is like to feel utterly alone like no one can possibly understand. But someone does…those of us who are in that challenging journey right beside you. Ultimately, it 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 the many families who were lost and unsure where to turn for help. I knew these families could relate to my experience and draw benefit from it and so answering an undeniable personal call I shifted my professional path and dedicated my career to the advocacy of children with disabilities. Let me tell you how I got here.
A STORY OF HOPE
The following is the story of our journey with Brandon…It is a story of hope…
My life is divided in 2 parts, life before Brandon and life after Brandon. For parents of children with dire health issues there is always a date that is indelibly etched in our mind…the day that transformed our lives forever. For me, that was a sunny but cool and breezy Thursday afternoon - October 16, 2002, 3 days before my 32nd birthday. Brandon was born on August 21, almost 8 weeks prior, a perfectly normal, beautiful, healthy baby boy…or so it initially appeared. On the day of his birth my world was seemingly blessedly complete. I was living the fairy tale all little girls dream of – I became a lawyer with every intent to become a criminal prosecutor, I married my prince charming, bought a cozy, warm and lovely little house filled with so much love and dreams ready to make come true and designed the perfect nursery and now we were ready to fill it with our first perfect baby boy…and live happily ever after. Boy was my perfectly written script flipped! I had not for one split, single solitary second pondered the thought that something could go wrong in my ideally planned fairytale. Then something did; something went terribly wrong. This imperfect little angel entered my otherwise flawlessly planned life, unraveled my world and shattered my story book reality. It was an emotional and heart-wrenching revolution that for a period of time seemed to crush all my dreams for the future and emptied my soul of all hope filling it with complete panic, confusion and fear. But I can happily confirm that, with time, my inner strength resurfaced, the sadness dissipated and hopes returned, albeit after a necessary total pivot of expectations and full acceptance of my new fate. I had to mourn the death of the perfect boy I had dreamed of, and I welcomed the very special angel who took his place and made me the woman, mother, wife, and lawyer I am today.
I suspected there was something wrong with my child, but I told myself that I was just being a hyper-vigilant, first-time mom. So, my first piece of advice to you is to ALWAYS ALWAYS ALWAYS listen to your intuition, that inner voice that is never wrong. DO NOT EVER DISMISS IT. Initially, I intentionally and conveniently ignored mine because, almost delusional, I refused to believe that anything was wrong. At around 6 weeks, we noticed odd sudden jerky movements that Brandon was experiencing intermittently. We took him to our pediatrician who initially told us that the quirky little movements were inconsequential and innocuous, 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 seemed to be exhibiting. No big deal, involuntary little reflexes from the nervous system and very normal for newborns. My fears were only quelled temporarily. Something still did not sit right with me, a kind of uneasiness that persisted. I very quickly began to feel unsettled once again as the movements continued and seemed to increase. Still, for a few days despite the ongoing jerky reflexes 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 first-time 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 perfect world was about to become undone.
I will never forget the frightening look on our pediatrician’s face when she saw the video of Brandon we had recorded at home during these episodes. She seemed puzzled and alarmed by what this could be and told us it appeared 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 causing irreversible damage to the brain. Our amazing pediatrician made all the requisite phone calls and arrangements and within 30 minutes arriving at her office we were told to head straight to the Pediatric Unit at Cedars Sinai Hospital in Los Angeles where they would immediately admit Brandon – and where just 8 weeks prior we had celebrated the happiest day of our life - the birth of our first little prince. Brandon was immediately submitted to a plethora of testing, and it was the beginning of our world unfurling.
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 plethora of tests were required right away to rule out a number of medically nefarious possibilities. One of these dark scenarios was that of the seizures potentially being caused by a cancerous tumor that typically grows behind the eye which leads to blindness. We were told the test results were instant and we would have an immediate answer. My husband and I were escorted to a large and cold room where Brandon was taken for the testing and we were told to wait outside as they rolled our baby’s hospital crib away from us. We sat silently on the cold floor of the hallway right outside the MRI room where staring at and waiting for the two double thick doors before us to open where the fate of our child awaited on the other side. The fear we felt during that brief time is inexpressible…We were emotionally paralyzed, holding tightly to each other’s hands. When the doors abruptly opened, and the nurse told us to come in I did not think I could bear to face what was before me. I physically froze and I could almost feel the panic flow through my veins. I’d never felt this feeling before and I never want to feel it again. The nurse asked us to come in again and as I struggles to take the steps toward that room with my feet feeling as heavy two cement blocks; my heart beating so furiously I thought it would just stop. We were immediately thankfully 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 intensity and quantity. It tore our hearts to see our little baby in such agony. He would cry uncontrollably after every seizure. This was too much for a new mom, for any mom, any parent to withstand. Desperation, hopelessness, fear and panic repeatedly highjacked every positive or hopeful thought I attempted to muster. 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 the seizures as uncommon, affecting only one baby in a four thousand. Approximately 60% of the affected infants had some brain disorder or brain injury before the seizures begin (symptomatic seizures, meaning they were a symptom of an underlying condition), but the others had no apparent injury and could develop more normally (the “cryptogenic” type). What did all of that mean? “More normally?” We then waited for the test results to reveal whether Brandon’s seizures were one or the other with Brandon’s odds of recovery and development greatly dependent on the outcome.
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 beating 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 infant seizures and the odds of beating their terrible effect on the brain were very, very discouraging. I do not recall much about the time immediately after I read the findings from Google, just that certain words jumped out of the page at me: hemiplegic, paralysis, mental retardation, severe developmental delay, cerebral palsy, hemispherectomy, atrophy, weak muscle tone…sudden death. The room spun and all of the voices around me became muffled. I felt lightheaded and devoid of any feeling at that moment, just pure numbness and absolute emptiness. I almost fainted, and once again I could not breathe. This was the shock of my life. “This is not supposed to happen to me. I do not have the strength to handle this. What will happen to my boy? God, where are you?” Those were my thoughts. But at some point, I finally slipped out of my emotional coma and finally burst into tears uncontrollably; up until that moment I had been too frozen with fear to even cry. And all I could do in that instant was lift my beautiful baby from his hospital crib crying uncontrollably and praying incessantly. I thought I would never stop crying. But I did…when an inexplicable strength suddenly enveloped me. I still do not know if it was God lifting me from my despair or the innate fighting instinct that I now know a mother develops and becomes equipped with the second her child is born, and it just suddenly kicks in when you realize your baby needs your strength and your fight. This was my child, and I would care for and love and protect him no matter what test results were to reveal; my perfectly imperfect baby to love, protect and defend in the face of any circumstance, no matter what. A new me emerged, the warrior my kid needed to go to battle for him. It was a sort of rebirth that I still cannot quite put into words.
Once the seizures were identified as Infantile Spasms, the next step was to determine what was causing them and determine treatment. 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 congenital defect that caused the infantile spasm seizures; and unless those seizures were somehow controlled, the odds for any semblance of a normal life were very minimal. The MRI revealed that our baby had a condition called Focal Cortical Dysplasia, a type of malformation of the cortex in the frontal lobe area. His seizures were symptomatic which meant very poor prognosis long term…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 if he stood any chance at all of development. There is no adequate descriptive language to articulate the feelings of anger and despair felt in that moment or to describe the immeasurable fear we felt for our baby boy. I remember for a split-second traveling in my mind to his 18th birthday. Instead of a high school graduation and congratulatory college acceptance letters, I imagined a severely disabled young man in a wheelchair deprived of the life we dreamed. But this was our moment of truth. But somehow, I dismissed the overwhelming emotions that had me almost paralyzed with terror and it was time to fight for this kid’s future no matter what it brought with it. I was going to do all within my power to maximize his meaning in this life and ensure whatever potential he had would be materialized. My child taught me there is no more powerful driving force to accomplish that which might seem or deemed impossible than unconditional love.
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 that shut down his immune system during the 2 months the medication was administered (a 50/50 chance of effectiveness was given). We needed to keep him quarantined for that time since the smallest infection could have meant his death. But the medication was effective, and his infantile spasms vanished never to return; although we were told the chances that they would not return were slim. We were blessed with a very unlikely outcome. Since the seizures never returned, which is what would cause ongoing brain damage if not stopped and requiring surgery to remove the malformation, the surgery was never necessary…and to this day we hope and pray never will be. 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 continued to shock and impress us with his progress…Yes, at his own slow 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. We put his IEP in place at the age of three and therein started the second phase of my career. It was a battle to obtain Brandon a 1:1 aide in order to keep him integrated with his typical social peer models, but this was non-negotiable because it was an essential service to ensure he could be fully integrated in a regular education classroom. Brandon was my first client. We successfully won that battle and he was placed in a fully inclusive classroom with his 1:1 aide from pre-school until the day he “graduated” high school with a certificate of completion. He did it! And he did so having always been fully mainstreamed which turned him into the resilient and independent adult he is today. I am reminded of the scary thought I had when he was given a most grim prognosis about his life at the age of 8 weeks when I wondered what his life would be like at the age of 18. The kid who was never supposed to walk or talk proudly led the procession at his high school graduation in June 2021, with his proud mama sitting on the stands shedding a river of tears witnessing this incredible and miraculous moment. Yes, he was on the alternate curriculum with inclusion facilitation support, a 1:1 district-funded private aide, OT, PT, language and speech services and social skills groups - and it was all of this support to which he was legally entitled that allowed him a full and meaningful access to an inclusive education. He was educated with the typical peers that provided valuable and critical social lessons and experiences for him daily. Yes, he walked a little funny and did not have great use of his right hand and behaved a little quirky, but he was loved and cherished by his typical and special needs friends alike. Being developmentally delayed did not mean he could not keep up; he could and did with the right assistance. My boy inspired my indefatigable mission to ensure that all the kids I represent have access to the same support, services and opportunities to maximize their potential to live an independent and meaningful life once they graduate high school.
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, a better wife 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 that Brandon’s seizures stopped, and his brain remains surgery free to date. Many children with his diagnosis are not nearly as fortunate. He was always a happy and amazing little kid enjoying the experiences that all school age children should, with the proper supports and services in place to make it possible. We are beyond words proud and grateful for all of the accomplishments he achieved despite the greatest of odds. But we had to fully accept our child for who he was and most importantly for who he was not and adjust our expectations accordingly in order to best help him in the most realistic light…knowing how much more he could be with the right tools and support.
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. But remember always that you are not alone.
Life has never been and is not ideal and we will always worry about Brandon’s future and his/our lives are not what we once dreamed for our son, but they are ones filled with love, compassion and always, always hope. He was conserved when he turned 18 as he will always need our guidance and he is loved and adored by two brothers who he will always have his back when his parents are no longer around. We stopped asking the proverbial “why” long ago and fully accepted OUR reality creating our own version of “normal.” I revised my fairytale and realized that happily-ever-after has many different versions…and ours is one we have fully embraced, maximized and treasure. And it is OK. Today Brandon is pursuing his passion, which is music writing and production with the motto his mama taught him – to NEVER SAY NEVER! Always reach for the moon, my most special boy, because it just may land you in the stars…