Momtality’s note: Three years ago I was a by-stander on a journey that I never expected. I met Sara 6 years ago through mutual friends when we were both new divorcees. We quickly bonded over happy hours, girls vacations and eventually family trips. She has three boys and I had three girls and they quickly felt like family – bonded by their mothers’ childish behavior when you put us together. Sara’s oldest son, who was autistic, quickly assumed the older brother role with all the kids including my girls. In his black and white world he worried about them, lectured them and protected them and I adored him for it. Julian was a very sneaky kid to deal with because he had this amazing power to make you forget he was autistic despite his somewhat robotic tone and unfiltered conversations. Julian had the most positive outlook and the most amazing love of life.
That love of life was in full force for his 15th Superhero birthday. Julian would text me almost every night to talk about the party and ask if we were going and to send me videos he thought were funny. At times my boyfriend (and now husband) would worry that I was getting so many texts late at night until he found out who was sending them. It was impossible to not forgive Julian anything. He had also fallen in love with Julian. The night of the party Julian screamed in excitement as he opened the door to greet us and our collective five kids. The house was full of people in costume since the party doubled as a Halloween party. Little did we know that only a couple of weeks later he would be diagnosed with Ewings Sarcoma and life as we know it would be turned on its head.
I accompanied Sara and Julian to the hospital numerous times. There were times I happened to be in the room when the doctors would have something they needed to explain and I would unexpectedly serve as a second set ears for my friend. There were times when the magnitude of what was going on was just too much to understand. The one constant was that through all of these times, I can promise you with every ounce of my being, that despite what doctors said I NEVER thought that Julian (who came to be known as SuperJuls) would succumb to his Kryptonite. Much less did I think it would happened in a mere 14 months. I can tell you that I still hear his voice and I miss him everyday…but I didn’t lose my son. Sara did. And I cannot begin to fathom her loss and her pain.
February 25th, 2017 marks the one year anniversary of his passing. Today, Sara speaks of her son daily and loves to share his pictures and tell of his amazing spirit and life. She smiles and laughs and you can’t help but sit in awe and wonder how she manages to do it. But she does and she does it beautifully. I thought there would be no better way to not only honor Julian but honor his amazing mother than hearing her speak of her son and share how she copes with the loss of her baby.
Sara Caso-Perez (A.K.A. SuperMom)
I could sit here and write endless lines on how my son’s death has changed my life. There is no weaving of words that could describe the endless grieving and heartache that the absence of my “Superjuls” has on my life, his father’s life, and the life of our family.
You see, I would really rather write about Julian’s life. I want you to know how he lived. Because the one thing Juls would always say to me is “Mom, I want to live!” And by living, Julian did not simply mean to be alive because he would always follow that line with “I want to do EVERYTHING” and honestly, he tried. Whether it was standing in front of a thousand people to give a speech, dancing on a stage, talking to a pretty girl, or learning to skateboard, Juls was up for it. He was always an early riser and was constantly nagging me with “what are we doing today?” He kept me going during the darkest moments and his unfiltered language kept me grounded. The same kid who doctors said when he was 3 would never speak a word, grew up to not only communicate with me but with everyone around him using a language of great depth and love.
Did my son ever feel sorry for himself? Was he scared? The answer is yes. He felt sorry for himself and he was scared since he was little boy! You see, cancer was not our only cross. Autism loomed in Juls’ life as a constant reminder that he did not belong with the “regular kids.” Juls spent a great deal of his life feeing isolated and lonely, but he had an internal light that defaulted him into staying happy and positive. Saying things like “God made me special and that’s why I’m Super.” He was always kind and friendly. He cared very much about his family and his friends, and he was incredibly sensitive to people’s feelings. He didn’t like bullies and called people out when they were mean and unfair. He didn’t think about being popular although he became incredibly popular. The lines between what was right and wrong were simple and clear in his mind.
I’ve had people tell me, “you’re lucky Juls was autistic, he probably didn’t really understand what was happening.” Nothing could be further from the truth. He knew exactly what was happening, but he also knew how to be courageous and what I realize now is that as much as I thought I was protecting him, he was the one being “strong & brave” (his two favorite words) for all of us. He knew he could die and he would ask me about it and tell me things I didn’t want to hear. I regret not being able to talk more to him about my ultimate fear, I was the one in denial. He obviously wasn’t shy about the subject of death and he became incredibly close to God and prayed constantly. During some of his most difficult moments, Juls would say things like “God promised he will make me new again, mom” and all I could do is hold him and pray.
I am surrounded by many friends and family who say “You’re doing so well. You’re so strong.” These words emerge from people mouths and perplex me sometimes. I guess, I don’t understand what they would like me to do. Do they not understand my son’s energy and life. I choose to celebrate and LIVE life like Juls! The very life he yearned to experience. Who am I to reject the one thing he wanted more than anything else? I hold fast to my 2 living sons, Gabriel and Adrian, who live and breath the hope of a full life. Their dreams and their passions are mine. My hope is that we make it it to the finish line ragged and worn from a life fully lived and experienced. We will not go forth lightly…
So, I pray to My God, as he cradles my Juls in his arms. And I dare not distance myself from His grace. For although I do not understand the mystery of this life, it is only in faith that I can survive its tragedies. I no longer fear death. I see it as a natural transition of our souls and I humble myself and fall to my knees in resignation. And,
in that resignation I find a voice within me and my son telling me it’s ok…
So yes I mourn, at the end of a long day, watching Juls’ social media posts and videos. I laugh and cry at his silliness and feel abundantly grateful for social media and technology as it allows me to see him and live a little bit of him again. And of course there are times that my mind exists in an infinite loop of “how do I survive the next second?” Sometimes I even feel a wall between myself and others formed. Like those who have lost their mother or father as a children. It is the death of a dream and a what could have been. I don’t think it can truly be understood unless it is experienced. When I try to draw a comparison or a metaphor there is none…the pain is undefined. Deep in my soul, I understand the loss. My life before was one thing; now, this new life is foreign. It is now a life lived in the raw because I now understand the full value of it!
So I think, I dream, I work, I cry, I scream, I celebrate, and I remember. I carry his beautiful memory until death…. no more a burden than when I carried him in my womb. I’ll hold him close until my final, grateful breath. Grateful that I did have him, if only for 17 brilliant beautiful years! And when I close my eyes, I remember that handsome, beloved face, and in that perfect moment, I smile.
Here I leave you with the boy who was never suppose to speak delivering a speech to a packed house at the Live Like Bella Gala as he received their award.