It’s been a rough year for my little family, and not just because of my son’s autism diagnosis. Work, money, marital problems, you name it, it’s been an issue this past year. I have gotten pretty down at times. I have spent many nights worrying about my son’s future and during these moments of weakness, I have resented the fact that I have to worry about these things. “How independent will he be? Will he live on his own, find love, have a career?” I don’t know. I am guilty of engaging in a mentality of self-pity and I have struggled to find my gratitude.
When I become aware of this negative behavior, I try to check myself. Many of these moments have occurred when a Saint Jude’s Hospital for children with cancer commercial comes on the television. I find myself thinking, “It could ALWAYS be worse,” or engaging in the mental refrain, “No one is sick, no one is dying, everything is okay.” These things are true. My intentions are good. But my thinking is flawed.
I worry so much about the future, and one of the ways I deal with this anxiety is through writing about it. I started writing after my son was diagnosed with autism about a year ago. Since then, I have miraculously managed to develop a modest following of fellow special needs and neurotypical mamas. I get a lot of messages from moms just like me, who kindly share their stories, fears, and hopes with me. They keep me going, and I am grateful for each one.
So last night when I saw a new message in my inbox, I expected to hear another story just like mine. The message started off with a familiar tone. It was from a woman who follows my page and has two autistic daughters, bless her heart. But she wasn’t writing me for advice, or to vent; she was writing me out of desperation. She was writing me about her best friend, who also has an autistic child, a beautiful five year old son named Aiden. But just a little over a week ago, this mom’s life changed forever.
As I read the words “Stage IV high risk neuroblastoma,” two worlds collided within my mind. He has cancer. This little, adorable, sweet, beautiful five year old boy who has nonverbal autism, also has stage IV cancer. Instantly, all of my self-comforting thoughts of how “at least my son was healthy,” came to a crashing stop. Life is not an either/or game. My son isn’t immune from cancer, nor is he protected from tragedy, merely because he has autism. None of us are. And just as our family and friends struggle to comprehend what life with a special needs child is like, I have struggled to imagine what life is like for Aiden’s mother.
On Halloween, Aiden had surgery to place a port and remove his tumor. The doctors believe they were able to remove all of the tumor. Aiden will need a few days to recover from his surgery before he can start chemo to fight all of the cancer cells that are throughout his body. I cannot imagine his mother’s fear or pain in not being able to have a conversation with her non-verbal autistic child about what is happening, how he is feeling, what he needs, or what more she can do for him. I simply cannot imagine.
At times, have been comforted by the fact that my child is not ill. But what does this special needs mother have to comfort her? How does she find the strength to go on another day, going back and forth from hospital visits, no sleep, conversations with doctors and nurses, treatment plans and grim statistics? How does she go on? What mental refrain exists for this mother at the end of the day? I don’t know. And while I hope that I never do, I am forced to confront the reality that nothing in this world separates my life’s potential circumstances from hers. Perhaps not so long ago, in a stressed moment of worry about her child’s future, she thought, “at least he is healthy, at least he is safe.”
As I read the email, thoughts of realization darted through my brain. All of those thoughts of worry over my son’s future and the resentment I have felt for having to think them- each one is a luxury. Each concern over how my son will function as an adult with autism relies on one naive assumption that I have conveniently afforded myself; I have assumed that his future is a definite. I have assumed that he will be here. I have assumed that he will always be as healthy as he seems today. What a luxury I have been given to be able to entertain this false narrative.
I immediately thought of the woman who wrote me about her friend’s situation. I knew her. I have seen dear friends in desperate and tragic times and been powerless. I have scoured the internet for hope and words to pass on when I had none to offer. She must be terrified, helpless, and desperate to help her friend and her beautiful son. And she came to me. What an extreme privilege that I am in any small way in any position to help these people who share a part of my journey as a parent.
But how? What can I do? My following is small, and the world is so big, and life is so cruel, and I felt as powerless and desperate as the woman who wrote me must have felt as she typed her email to me. But none of that matters. This feeling of powerlessness did not stop this woman from contacting me. It did not cease her efforts to help her dear friend and her family. So it can’t stop me from doing the only thing I can do; share her story with you and hope that I can contribute in any small way to help this child.
I could write and I could hope, just as these women are hoping against all hope for some small miracle for their beloved boy, Aiden. His Facebook page is “Aiden’s Battle is My Battle,” and ain’t that the truth. As difficult as it is for me to admit, my beautiful autistic son could one day face cancer, and I would have nowhere near the means it would take to zealously fight such a fierce battle. Who would be there for me? How would I pay for the unimaginable cost of fighting to save a child’s life? I don’t know. My guess is that I would hope and pray that the good in this world would find it’s way to my son and I. It wouldn’t be a lot to go on, but it would have to be enough.
I do not know Aiden, or his mother, but I do, because it could be me and it could be my son. Aiden’s battle is my battle, and it’s yours too. And what a gift to be able to help this family in any way. So share this sweet boy’s page, donate anything you can, send a message of hope, or say a silent prayer for this family. Do something; do anything.
We all feel helpless over our own life circumstances at times, but instead of focusing that which challenges us in our day- to-day lives, let us focus on what a blessing it is to have the power in life to do some good. There are so few times in life that we truly have the power to change the world for the better. There are so few moments in life when we can give back that which we would hope to receive should we ever be on the other side. This is that time; this is that moment. Share. Give. Support. Pray. Hug your child. And then repeat.
You’ll be giving a moment of your time, but it’s a precious moment in time that this desperate mother would give anything to have with her child yet another day. Besides writing, sharing, and giving the small donation that I can, I’ll be praying for Aiden and his mom. I’ll be trying to find my gratitude in the present moment of the present day because, really, that’s all any of us ever have.
Aiden and his family appreciate all of the love, support, donations, and prayers. They thank you from the bottom of their hearts. Find out more at:
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