Sixteen years ago today I was invited by fate to the loudest and craziest party that I’ve ever been to. On April 12th, 2000 our son, Noah, was born after 27-hours of labor and his birth became my life’s watershed moment. That date signifi...
Sixteen years ago today I was invited by fate to the loudest and craziest party that I’ve ever been to. On April 12th, 2000 our son, Noah, was born after 27-hours of labor and his birth became my life’s watershed moment. That date signifies the fracture that exists between the two halves of my life.
April 12th, 2000 and everything that came after it has been the roller coaster of my lifetime. It has been a ride full of face numbing moments of plummeting grief and periods of unexpected soaring celebration. My son is one of millions of children who are living with autism, and my wife and I are only just two of the countless caregivers who have fretted and loved those children. Our story has never been unique. The obstacles our family has faced are no different than what so many others like ours do. If you ever find yourself wondering who you should be praying for I would recommend that you offer your intentions for the people living with disabilities and the people that love and care for them.
For years I have been writing about my experiences with Noah as he journeys through the constantly shifting maze of autism. I spent the past weekend compiling all of the posts, essays and stories that I’ve penned and it turns out that I’ve had quite a bit to say. I’ve written over 220,000 words on the matter of Noah’s bravery and my subsequent limitations. I’m actually feeling both proud and disturbed that my word count is that high. Most of what I have written comes in Unabomber-like manifesto form that was usually inane as it was desperate. Looking back at who I was at the onset of my sons autistic adventure, I find a terrified father who had no clue about how to express how helpless he really felt. To watch my son twist and writhe in a merciless wind was the darkest of nights I have ever faced. The only outlet for me was through writing. It helped me squeeze a good amount of the venom of hopelessness out of me.
I cannot imagine that I would still be here without the fortitude of my wife and the power of the pen. Every time I was on the cusp of turning to ash it would be Noah’s mother, my love, who would keep whispering “Tomorrow will be better. Tomorrow will be great.” over and over until it became true. It was her hope that became the ink that I used in writing about Noah’s autism. Without her conviction I would never have found the right words to use. She is the lyricist to our parental love song to Noah.
I was the worst of personalities to be entrusted with being a father to a child living with autism. I was born a selfish boob who would have an easier time solving a NASA mathematical equation than being able to put the needs of other people ahead of my own. I’m not one of those strong types of fathers who effortlessly carry the weight of the world on their back. I have the backbone of a chop stick. I can snap and splinter with the lightest of pressure on me. I’m known to opening cry during Apple holiday commercials — how in the hell was I given the role of daddy to a child who needs so much help? I was told by the enlightened that God only gives us what we can handle. That turned out to be just a nice thing that people say to other people who are in the midst of suffering. Look, I can’t handle microwave popcorn instructions — so how did any intelligent divine engineer decide that I would be able to be effective in this roll? There is no doubt that I am the most unlikely central characters in Noah’s story. There are literally a billion other men who have been born that would have been better suited for playing the part that I was given — but everyday I thank God that I got it! I was and am still in over my head...and I love every minute of it.
Through the years I have been tested by fire of heartbreak and then later transformed by the light of hope. Everything I thought I knew about life, God and family has been taken apart and sewn back together in an uneven patchwork of beautiful seams and stitches. My Son was born with autism and it will forever leave a mark in his life — just like he has in my heart. For the past sixteen years I have been able to be lucky to have been the recorder to his most excellent autism adventure. Over the past sixteen years he has bloomed into a person who is going to change the world. I may be a man plagued by every conceivable doubt that someone can conjure up — but I don’t doubt his purpose. Mark my words his love and kindness he effortlessly wields will someday help carve his name into the tree of life. Noah puts on a daily Masterclass in Compassion every day for his parents and brothers. I think I’m getting a D+, which is probably pretty generous.
A couple years ago we were able to sit down and tell Noah about his autism and it has affected the way that I write about it. I no longer write about autism as a selfish way to apply balm to my own wounded heart. Rather, I write about it as a vehicle for him to someday read and remember that he was loved by his mother, brothers and father. My random musings are meant to be a time capsule that he can open whenever life feels complicated and confusing. I want to share with him the hundreds of comments and messages of support he has received through the years of my writing. What started out as my vanity project will hopefully turn into a moment of grace for him. Although the coil of autism sometimes makes him feel alone — he has never been. There have been scores of people pulling for him. I want him to be reminded through the love that other people have shown him that there is nothing broken about him. He is a intricate mosaic that reflects the miracle of difference.
A couple of days ago he asked me what it was like to be a dad to a kid like him. I told him that he has taught me more than I will ever teach him. He asked for some specifics and I kind of beat around the bush a little too much. I couldn’t find the right words to describe what I’ve learned from him. It wasn’t until going through my collection of things I’ve written about him that I found this piece that was published by Autism Speaks last year. It perfectly summarizes what I’ve (and countless other caregivers) have learned from children who are living with a special need.
Today on his birthday I will read this to him:
About. That. Autism.
We are nearing the anniversary of our 15 year journey with our son through the maze of autism. This is what I’ve learned so far:
I’ve learned about the power of hope.
I’ve learned about the folly of making life plans.
I’ve learned about how to build spiritual and emotional levy’s.
I’ve learned about how much of a coward I am in comparison to that of a little child.
I’ve learned about horse therapy, speech therapy, occupational therapy, cognitive therapy, supplemental therapy, food therapy, and dozens of other therapies.
I’ve learned about how to not be closed minded when it comes to looking for ways to help other people.
I’ve learned about the delicate balance most of our senses have with each other.
I’ve learned about acupressure, EFT, and energy healing.
I’ve learned how to be grateful for small kindnesses.
I’ve learned that my once often bragged about faith life had the strength of toothpick.
I’ve learned that God wasn’t the one hiding from me – it was the other way around.
I’ve learned that a life is not measured by how much you love, not by how much have, what you do, how many arguments you win, or social status.
I’ve learned that my previous view of life was absolute crap.
I’ve learned that there can be joy that can be harvested from struggle and suffering if you just look for it.
I’ve learned that outward appearances should never define the magic inside a person.
I’ve learned that most people are kind and understanding if you tell them your story.
I’ve learned that there will always be a small group of people who will be assholes who judge those who are different than them.
I’ve learned that life is not always going to be fair.
I’ve learned that there is always a way to get past giant walls.
I’ve learned that laughter is really often the best medicine.
I’ve learned that Garth Brooks was maybe right about the value of answered prayers.
I’ve learned that speech is overrated.
I’ve learned that tender hugs are very underrated.
I’ve learned that when I fall down I’m also being shown the road map of how to get back up.
I swear I’m trying to follow his lead. I swear I am – but I’m not perfect. I’m grateful that I’ve learned that perfection is boring. Perfection is a bullshit word that is meant only for baseball or computers. Everybody has jagged and broken pieces in them. It’s those rough edges that make us beautiful. That is what I have learned from his autism.