Yesterday at Costco Wesley walked along pushing the cart. We began to pass a man who had what appeared to be a child, perhaps 6 or 7, sleeping in the cart when he suddenly stopped to engage Wesley. With a gigantic smile, he held out his fist to give him knuckles.
“Hi buddy!” he said as if he knew Wes.
Wes happily obliged in giving him knuckles.
“How are you?” he said with his smile getting even bigger.
He looked at me, “How old is he?”
“He’s 21,” I told him.
He pointed to his son in the cart. “He is 18!”
I walked over to say hello. He wasn’t a young child. He was a child like ours. He had special needs.
We stood there for a few minutes in the frozen section of Costco. People hurried by as we talked about our boys. It wasn’t about exchanging information. It was about being, even if briefly, with someone who lives in my world.
Their life is as mine. Without being told, I know things about these strangers. I know this man or his wife has a hospital bag in his closet. There sits an already packed bag just in case that fever isn’t just a blip but the start of an extended hospital stay. Their arms are tired every single night from maneuvering their son. I know they hook up a feeding tube to give their child the basic sustenance to live. They try to balance time with the other children but some days they just can’t and it is no one’s fault though it feels as if it should be. They carry the weight of how their children are impacted. Though they will likely grow to be kinder and more compassionate adults, there is still a cost. I look at his beautiful wife whose smile is just as big and know he has a supportive spouse. Their friends try to understand but can’t possibly because they always only pass through.
And I know they have cried over the simplest victory. They celebrate every smile and every laugh. Their life is amplified. They take nothing for granted and lay down each night and thank God for one more day with their son.
Being the parent of a child with special needs is something like being a citizen in a foreign land. You appear to be like everyone else but your culture is different. The way your family eats is not like others. Though you speak the same language, yours includes words and acronyms the others don’t know. Your family can’t attend events unless they intentionally turn down the volume and the house lights are just half dark. Sensory friendly events are few and even fewer are churches to welcome the entire family. Days are filled with vital stats checks and diaper changes and medications. Some nights sleep is regular and others it consists of only two hours. There is no rhyme or reason. It is just how it is.
Complete assimilation just isn’t possible even though you once lived with the same customs your friends luxuriously enjoy. As much as they don’t understand yours, you can no longer imagine life being any other way than how it has become. For it to be any different would mean the worst of nightmares.
But then you see a couple and even though they are strangers, you recognize a familiarity that is not just welcomed. It is sought. They know the words you do. They don’t just sympathize. They empathize because they live there too. The only thing you may have in common with them is that but the weight and joy of that encompasses who you are. So you just stand there for a few moments. You feel your soul relax in a way it only can when you are with fellow inhabitants.
For a fleeting few moments the abnormality of your life isn’t there. You soak in the seconds when abnormal is normal. And you smile and thank these strangers, these co-inhabitants, for stopping to give knuckles to Wesley and a smile to your heart.
Tag: autism awareness
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Co-inhabitants
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Autism
Today is World Autism Day. Every day for us is autism day.
Autism is just one of the many ICD-9s that accompany my son’s medical chart. At last count he had 15.
Wesley was born in October of 2001. Despite multiple ultrasounds by several physicians, I had no idea he would be born any way other than a healthy baby boy until the moment of his birth. How I wish I could say otherwise. Sometimes I wish my story included the part where the amniocentesis came back abnormal but I gave a war cry, pounded my chest and said, “I can do this!”
But God and Wesley held the secret for 37 weeks. Laying on the operating room table I knew something was not quite right. His cry was so quiet. The nurses were somber. No one congratulated me until his dad brought him over.
He said, “Here is our son. He has some anomalies and the geneticist will see him in the morning. Isn’t he beautiful?”
An intense, sudden state of panic overwhelmed me. Joy, excitement, fear, and sadness swirled in my soul and each feeling was indistinguishable in the tornado of such a moment. The human spirit is not meant nor equipped to feel so many emotions at once.
Three weeks later we took Wesley to Omaha, Nebraska to see the geneticist there. As we drove I began bargaining with a God I had barely spoken to over the last ten years. I wasn’t even sure He would remember who I was. I begged Him anyway. Please. It can be anything. Just let me keep my son.
After examining my sweet boy the geneticist sat down with a large text book. He flipped open the page and pointed to a picture.
“We believe your son has Rubinstein-Taybi Syndrome,” he bagan.
The tornado descended once again. I became dizzy. I interrupted.
“Will he be mentally retarded?” I asked.
“I don’t like to label kids,” the geneticist replied. “If you expect him to be a typical child with RTS he will very likely become a typical child with RTS.”
He could see the pleading in my eyes.
“But yes. He will have mental retardation.”
I excused myself to the restroom. Locking the door behind me I collapsed, sobbing on the unforgiving concrete floor.
How I wish I could go back in time and speak with all the knowledge I have accumulated over the last 19 years to that young mom crying. I would say…
Don’t be afraid. You will figure out how to mother this child and he will teach you more than anyone else will without ever saying a word. You will have to fight for him. You will be his voice and he will be your heart. He is going to teach you to love unconditionally with no expectation. He will show you the meaning of perseverance and you’ll learn to take nothing for granted. You will be exhausted right down to your very soul. You will stumble. You will fail. You will get back up and try again because he will need you to. His life is every bit as valuable as everyone else. You will learn to have empathy and compassion for others deemed “less than” in society. Use your voice and use it loudly when need be. You will be a better mother, daughter, and friend because your son was born this way. Life will be amplified from this day on. The highs will be higher but the lows will be lower. This isn’t the day your world ended . This is the day you begin to become who you were meant to be. You will reconnect with your old friend and God will lead, support, and direct you for the rest of your days. Grieve because you have lost a significant dream. But then get up. Dust yourself off. We have work to do.
Autism is not the end of the world but merely a transition into a different one. It is vibrant here. It is silly. It doesn’t make sense to me much of the time but does to my sweet son. This world is challenging. It is rewarding. It is exhausting and so exhilarating. I am a vastly better person for residing here. And after 19 years as a resident, I would have it no other way.