Passed away from SUDEP
A Letter to Sina
Hello Our Dearest Sina:
We cannot believe it has been almost three years since you suddenly departed leaving Daddy, Shain and myself forever. We grieve for your absence every minute of the day and feel our lives are so very empty without you. On June 16th you would have been 32 years old and we would be planning a birthday celebration for you. Anyway, we are keeping extremely busy with all of our daily obligations and this is the only way we can tolerate your not being with us anymore.
We remember vividly the day you were born, and the very first time we held you and fell instantaneously and completely in love with you. Daddy and I were magically and mystically transformed by parenthood when we brought you into the world. It was miraculous to see all the parts that belonged to your beautiful body that had so perfectly developed within only nine months, 10 toes and fingers, two arms and legs, a beautiful face with two ears, a head of black hair and dark eyes with long eyelashes. We examined your body carefully and found everything perfectly assembled and couldn’t believe the spectacular miracle that we now held in our arms and was ours forever. What a tremendous blessing God had endowed us with and we cherished you with all our hearts. We were in a state of blissful, parental insanity, pledging to protect and sacrifice our lives, if necessary for you, and it felt wonderful.
The feeling of love for you was so powerful that daddy and I decided to immediately have another baby, and mom delivered your beautiful brother Shain almost 1 ½ years later, whose features were exactly the opposite of yours, blonde hair, hazel eyes, fair skin and the hospital declared they had not given us the wrong baby. But of course, we realized Shain resembled his late maternal grandmother Anne. Yes, we also examined Shain carefully to make sure every body part was intact and found everything in top shape. Once again, we were in a state of blissful and insane parental heaven pledging our love and sacrifice forever to our second beautiful baby boy.
For the first two years of your life, our newly found family life was so perfectly normal and harmonious. Then, we decided to send you to nursery school and that’s when the first ominous cloud appeared. We first learned you had a problem with your language development and you were seriously lagging way behind the other children. After many psychological and language tests, it was recommended we find a special nursery school that would help you to develop your language, to eventually be on par with your peers. Tremendous improvement occurred with this early intervention, but you were still lagging behind your peers by the time you had to begin elementary school.
Little did we know this was the beginning of the first signs of autism. Our deep anger against autism became the catalyst for beginning a journey to try to fight this injustice of a terrible disorder that would cheat you from having a normal life forever. Daddy and I both thought the battle would be over once you began developing language. But after you entered elementary school and continued your special education, you had many so many serious challenges learning to read, write and socialize with the other children. We then realized that instead of climbing a hill to reach the summit we needed to climb a mountain, but we never realized how high the mountain was, and each year the mountain became higher, steeper and more challenging. While climbing this mountain, your autism always seemed to present new challenges, the most serious being epilepsy which you finally succumbed to. The other extremely serious challenges your autism presented for you was your constant emotional turmoil triggered by problems you did not know how to solve such as the computer breaking or suddenly losing electric power. As we continued to ascend the mountain to conquer your autism, there would also be the beautiful panoramic views of you and Shain playing together, the person who was your most important teacher and who introduced you to the world of social interaction and its unwritten rules of behavior. Shain involved you with his friends and daddy and myself felt so grateful to have Shain remove the loneliness that autism creates for those impacted with this insidious disorder. We also went on all types of adventurous trips together, either near our home or far away to see beautiful sights and visit our relatives living far away. Daddy and myself were, at times able to bask in the sunlight of having two beautiful children in spite of your life being scarred by autism.
We remember how you loved having birthday parties and receiving gifts, playing video games with Shain and his friends, going to the movies, ice skating, bicycle riding, playing basketball, swimming and any other activity we could possibly involve you and Shain with that you would both enjoy and develop your language and social interaction with others. You especially loved holiday celebrations and having daddy and mom’s friends and family visit for dinner or other occasions, barbeques and anything we could possibly think of to bring happiness into both you and Shain’s life. We were so proud of you when you finally learned to read (even though the teachers thought you would never be able to accomplish this), and also learned to be a terrific speller, write, type, loved computers and you were excellent at basic math. One of your favorite subjects was history, in particular learning about the Presidents of the United States. You relished going to school and particularly enjoyed the ride on your school bus and socializing with the children who initiated friendships with you and the compassionate bus drivers. Friendships were extremely difficult for you to develop, but when you found a friend, you cherished them forever. Going to school gave you a great sense of purpose and independence in your life, and provided you with all that you needed emotionally, teachers who cared for you, friends, the stimulation of learning about the world which helped you to connect to the outside world and develop your language skills, doing homework (sometimes until midnight) and still rising early to catch the bus the next morning at 7am, studying for tests, cafeteria food, gym, attending school events. You enjoyed the predictable routines that school provided, although there were times when your bliss was destroyed by cruel bullies who sensed you were different or teachers who were not sensitive to your autistic emotions and behaviors. You also loved summer camp. Eventually this almost perfect environment had to end when you were 21.
After you graduated from school, you could not fit into the unpredictable and complicated adult world, where all that you attempted to survive in that world failed, Your autism caused you to be isolated because of your emotional immaturity, sensitivities and overreaction to problems you had to deal with, your extreme fears and anxieties, your necessity for sameness (which is impossible to maintain in the real world where the typical person naturally adapts to changes in their environment) but instead exerted on you pressures to become extremely frustrated, depressed and sometimes emotionally unstable. Autism was gradually destroying you and reaching the summit of the mountain and conquering autism seemed further away.
You would beg me daily to allow you to ride on the school bus and return to the school you loved so much which provided you with the security and comfort you longed for.
Sina, you helped us every day with our busy lives by washing dishes, taking out the garbage, mowing the lawn, picking up the mail, walking Suzi twice a day, shopping for us at the supermarket and Walmarts (where your best friend Karen worked) and so many other ways too numerous to list to assist daddy and myself. You also helped plan our summer vacations, select new and interesting restaurants to eat at, movies to see, riding Metro North to visit New York City, seeing the Macy’s Fourth of July fireworks every year, and always longing to explore the world (with us) beyond your house. You made our lives so exciting and interesting and we miss your encouragement for us to join you in experiencing your enthusiasm for having a fulfilling life. Daddy and myself never realized, until after you were no longer here, how much we depended on you for helping us with our lives and deepening our understanding about your autism, and we are so grateful to you for all that you did for us.
When you became a teenager, the autism became more entrenched in the cells of your brain and your life became more challenging. Your anxieties escalated and made you become more established in your aberrant behaviors and rigid thinking. You would cringe every time we tried to hug or kiss you because you were so sensitive to anyone touching you. If anything broke in the house like the TV, or computer, you would become so quickly and extremely anxious and angry and demand that either the TV or computer be replaced immediately since you could not tolerate this interference with your planned routine. The cloud of autism was becoming darker and sometimes you raged at the world because you were so frustrated that life did not go according to your expectations. We desperately tried to clear these clouds away by seeking out psychiatrists and psychologists who we thought could prescribe either medicines or remedies to calm your anxieties and fears. But the medicines most often caused your autistic behaviors to become even more severe. We looked for solutions to your problems everywhere as we continued on our challenging climb up the mountain, and sometimes strangers would offer to assist you, and they would become our good friends, and help us in our quest to fight your autism. We still stay in contact with many of the wonderful friends, who helped you and your family try to improve the quality of your life and rememb the challenges you faced because of your autism.
Unfortunately, Sina, at the time you were imprisoned by autism, there were no treatments (and still none exist) to free you from your agonies. We looked for solutions everywhere and attended many conferences on autism research, joined autism support groups, read many books and articles about autism, consulted with many types of specialists but still could not find solutions to treat your autism.
At the present time, there is great hope that autism research is progressing and in the near future there will be treatments for autism. The only solutions we had to help us cope with your autism was to have a deep understanding of your autism, provide you with a great deal of love by supporting your emotional and physical needs, allowing you to have as much independence as you were capable of handling, making sure your school provided the best education you could receive and searching for other supports that would provide you some degree of happiness and fulfillment.
Your autism tried to close many doors on you, but we intervened as best we could to keep the doors open and protect your independence. You succeeded in graduating from high school with a standing ovation, since everyone at the graduation ceremony recognized the amazing achievement you had accomplished. You learned to drive a car, traveled to many places in the United States and Canada, visited at least 100 shopping malls or more (Sina loved shopping malls), became an excellent Ebay buyer and Seller. You were a walking encyclopedia of knowledge on WWE wrestling and met so many of the famous wrestlers when you attended, diligently, autograph signings and conventions. If you had not been a captive of autism, you would have been the CEO of a Fortune 500 company since you were a great negotiator, organizer, planner, scheduler, had a brilliant memory (which never failed to amaze us or others), and loved to be the “boss”. You loved dogs, and every time you visited the pet store in the mall you made sure you held and played with every dog that was being sold in the store. You were the pet store’s best customer. Also you could never pass a dog walking on the street with its owner without greeting the dog and giving it a friendly pat. Finally, we knew we had better get you the love of your life, Suzi, a beautiful Maltese dog, now six years old and who you greeted each morning with “I love you Suzi”. Since you left us, we realized Suzi was your gift to us, since we have found so much comfort through Suzi who has eased our tremendous pain of your no longer being with us.
Well Sina, it will soon be the annual Autism Speaks Walk at Manhattanville College in Purchase (near White Plains) and daddy, Shain and myself will be participating and we wish you could join us. Hopefully this year more money will be raised than last year and the money will be used for autism research by Autism Speaks. I still attend many conferences, especially related to autism research and feel very excited that the researchers are gradually discovering the causes and possible treatments for autism in the very near future.
Sina, we will continue saying prayers for you every day and continue our journey up the mountain until autism is finally conquered so that the millions of children with autism and their families throughout the world will be able to receive treatments for their autism in order to live normal and happy lives. Daddy, Shain, myself and many others will continue thinking about how you are doing in your new home resting in peace in the loving arms of your protector, almighty God.
We will always love you forever
– Mom, daddy and (brother) Shain