*Featured Image by Shaina Manuel
The Cycle of Time- Part One
The cycle of time- ancient as Hyperion’s chariot,
He pushes swiftly forward, but just out of reach.
In vain he tries to capture the dawn.
Hasn’t he learned that time waits for no one?
Time has a way of pressing forward, stopping, and circling back again. It can be both our enemy and our friend. It takes our experiences and weaves a tapestry of memory, color, sorrow, and joy, each thread connected to the other. Like a tapestry faded with years of wear, so memories fade, even memories we hoped never to forget. But time comes circling back, perhaps triggered by a smell or a familiar place, and the memories with it.
The birth of my nephew is one of those poignant memories. On March 13, 2009, my niece Missy and her husband Julian drove to the hospital for the Cesarean Section birth of their second child. Missy had instructed Julian to call me as soon as the birth was imminent. Julian phoned me at 12:34 pm. I quickly put away the project I was working on, ran a comb through my hair, and drove to the hospital. A new baby in the world is cause for much rejoicing.
I waited for the elevator wondering how I had been lucky enough to be present for this blessed event. With a large family, consisting of many grandparents and aunts they could have chosen anyone. But Missy and Julian chose me. My thoughts were momentarily interrupted when the elevator stopped, and the door opened to an empty cab. Relieved to be alone with my thoughts I walked in and pushed the button for the 9th floor. When I stepped out of the elevator, I felt a sense of joyful expectation. The young nurse at the desk was wearing a colorful polka-dot uniform which added to the feeling of lightness. Catching the cheerful nurse’s attention, I asked, “My niece is in surgery now. Where do I wait ?” With a knowing smile, she directed me to an empty waiting room. Again, I was thankful to be alone. My palms were sweaty, knowing the risks that had worried Missy about this baby’s birth. I stood, I sat, and I prayed.
In a matter of minutes, which felt much longer to me, Julian walked out of the delivery room carrying a little five-pound, fifteen-ounce bundle. He had gotten special permission to bring this tiny minutes-old baby to the waiting room to meet me. Without a word, he placed his son, my nephew, into my arms.“ His name is Ryan,” he said with tears in his voice. Tears of joy, surely, but of something else. As I held this beautiful Ryan to my chest, tears streamed down my face to join the ache in my heart … Time had stopped. I was transported to another place, a sacred space where spirit dwells. The miracle of birth and new life is the closest we get to God in this life, and I was privileged to bear witness.
Time had stopped many times before in my life. My marriage. The birth of my own two children. Then in the most life-changing circumstance, time stopped savagely and without warning when my son Ryan died by suicide on May 1, 2006, at age 24. Ryan had all the promise of a life lived well: working towards an engineering degree, playing the music he loved so much, and perhaps marriage. But all was cruelly stolen when mental illness came into his life. Even though Ryan began exhibiting symptoms several years earlier we did not recognize and came to understand too late, of depression, anxiety, and the beginnings of schizophrenia. Mental illness cannot be seen from the outside and can sometimes be unrecognizable to the person experiencing it. Or symptoms often be hidden from family and friends out of shame or self-stigma. We didn’t understand, and Ryan didn’t understand, until the emotional pain he bore became too much. There is far too much misinformation about the biochemical nature of this brain illness, and it is often instead viewed through a moral lens.
Ryan documented the depth of his psychological suffering in journals he left behind- things he never talked about. I am sure he tried, but we listened with our own definitions of what mental illness was, and because of our own stigma, we thought it could not be affecting our son. His journals describe the pain as a wretchedness, and he felt there was no hope left for him. He thought he was weak and unable to ‘overcome’ his struggles and the only alternative was to take his life.
Ryan was not given a choice about developing mental illness. It affects as indiscriminately as any other type of illness, impacting one in four people at some point in their lives. He wrote in his journal that he did not want to die but only end his pain. I was not given a choice about living the rest of my days without my beloved son. My choice, then and now is, how to use my pain to find meaning in his death while honoring his life?
After Ryan died my heart was too broken to remember what was good about living. Then, three years later in the midst of my sorrow, I was given the tremendous honor of being the first to hold baby Ryan. My heart overflowed with the sacredness of life and how this thread, graciously given, was woven around my heart to bring healing to my brokenness. I recognized the sadness would never entirely go away. It would be part of my life forever. Rather than push it away I have chosen to embrace it because without it, as Isabel Allende has said, “I would no longer know myself.”
In presentations for Breaking the Silence NM, a program to teach mental illness and suicide awareness to youth, I wanted to reach young people before suicide became an option. Presentations are ongoing and speak the truth that it is okay not to be okay and asking for help is not a weakness, but a sign of strength. There are treatments available that keep improving all the time, but first, we must give youth the language to talk about it.
Recently I read a quote that said, “I may not be able to live the life I wanted, but I can still live a life worth living.” Healing comes in fits and starts. It is time and patience with it that produces the meaning in our lives – a hurtful kind of comfort. Closing my eyes now, I can still remember the warmth of holding Ryan’s namesake, with the promise of all he would become.
Ultimately, I have learned and continue to learn, that our children were never ours to own, but belong to God. They are given as gifts and on loan for a set amount of time. A set time to be their mothers, to teach them, love them, build them up to the best of our abilities, and then to let them fly.
Fly Ryan, fly!
The Cycle of Time- Part Two
It is time itself and patience with it, that reveals the patterns of grace.
Baby Ryan came home from the hospital and began his life with the love of his parents and sister. He did all the things babies do growing up. On his second birthday, I gave him the Fisher-Price tool set that had been my Ryan’s, complete with nails, screws, and a hammer. Tears filled my eyes as I watched him pound the plastic nails into that little workbench, just like his older cousin had done many years before.
As Ryan continued to grow Missy began to suspect there was something going on with Ryan’s development. He did not want to be touched by anyone but her and needed things to be done in a precise order, as well as needing to be soothed more often than her daughter had when she was young. Eventually, Ryan was diagnosed with autism. That diagnosis can be such a blow to the family. But Missy went into high gear and began learning all she could. She joined with other advocates in her community. She taught her son about the amazing people who live with autism and their impact for good in the world .
People like Temple Grandin, author and Colorado State University professor who did not begin speaking until she was nearly four years old. Grandin is one of the most influential researchers in animal science and was named TIME’s 100 most influential people. She is an outspoken advocate in the autism community and in her belief that the characteristics of autism can be modified and controlled.
People like Albert Einstein, who is perhaps the most famous scientist and mathematician in the world. He had trouble socializing, experienced significant speech delays as a child, and later in life, echolalia which is the habit of repeating sentences to himself. His accomplishments led to our understanding of reality.
Like mental illness, autism is misunderstood. It is a developmental disorder that impairs the ability to communicate and interact and affects the nervous system. The range and severity of symptoms can vary widely. Common symptoms can include difficulty with communication, difficulty with social interactions, obsessive interests, and repetitive behaviors. Autism is on a continuum, and early recognition, as well as behavioral, educational, and family therapies may reduce symptoms and support development and learning.
Missy said in those early years that getting Ryan dressed was a challenge. She had to do it in the same order every day. Socks first, then the rest of his clothes. Nothing could be missed or rushed. Patience was part of the learning curve in her caregiving for this beautiful autistic child. She said, “ It was an act of love to do things in a way that made him feel safe and secure. Most people think you just force them and tell them to get over it. But the damage that could do….”
Life has eased through the years. And although he still needs to eat foods in groups, there is no meltdown about who makes it and passes it to him. He dresses himself now so he can do that how he pleases. In a wistful tone, Missy remarked, “ What a sweet day it was when we could drive with the windows down in our own car! For the first seven years of his life, that wasn’t an option. The outside noise was too much for him. So, I started walking to school with him daily. It helped desensitize him to noises from traffic or sirens. Baby steps. And now he LOVES the window down and feeling the breeze on his face. The look of bliss on his face! Melts me every time. He sure makes me proud every day. We have come so far. He’s come so far.”
In the cycle of time, we are pulled backward into memory even as life propels us forward. Time waits for no one. My son’s time on earth is finished. My nephew Ryan’s has barely begun. Despite the challenges that autism has brought, his mom has come to believe that autism is Ryan’s superpower. I think Ryan is beginning to believe it too! Rather than limiting him, it has opened his mind to possibilities that most people cannot see. Ryan’s impact on the world will come from that special place.
Fly, Ryan fly!
Desiree- the raw vulnerability and care you use to write about two subjects that are highly stigmatized and misunderstood is truly an act of love. The way you continue to love your son, creating Breaking the Silence, writing this beautiful piece; the words poignantly speaking to the depths of your loss and also the strength of your mission. You inspire me. Your son Ryan was my very first best friend and he’s woven intricately into the tapestry of my life. I carry him in my heart. Always. Thank you for including my son Ryan in this memoir. He is so proud that his Aunt Desi wrote about him and the first day you two met. Reading it from your perspective has been such a beautiful blessing to my family. There aren’t enough words to express my gratitude at the depths you’ve gone to write about his Autistic journey with such care and from a place of love. My heart is full knowing my Ryan is woven into the tapestry of your life too. Your ability to write so vividly and with your whole heart, is touching and inspirational. We love you. -Missy
Ahhh.. Missy. Your words touch my heart. You are an inspiration as you move forward in your life. The word inspire means to “breathe into” Love that image.. we can breathe into the lives of others and enlarge their perspective to break the stigma on mental illness and autism. Love you always..
Loved reading every bit of this. Thank you for moving me with your words & heart & story Aunt Desi. so thankful to be a part of this family. -Cal
Sweet heart that you are… thank you. I love that you copied some of the text. that spoke to you. The work continues – because I believe God is in it! Thank you for your words. We do have an amazing family. Love you always…