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: cognitive impairment
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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.
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So What?
Hope is birthed in and from despair.
My middle son, Wesley, has significant special needs. He was born with deletions on his first chromosome and is on the autistic spectrum. Although his chromosome set is incomplete, he is more complete than anyone I know. He loves abundantly and fearlessly. He knows no stranger. I often think and absolutely believe he loves the way God intended us to love – without prejudice, judgment, or reservation.
During my pregnancy I fully anticipated having a healthy, normal baby boy. Several ultrasounds pointed to this fact and no one saw anything out of the ordinary. The shock that was birthed with him was tremendous but so was the love.
When he was three weeks old my (now deceased) husband and I along with our two sons traveled to Omaha, Nebraska to see Dr. Bruce Buehler. He was board certified in pediatrics, pediatric genetics and pediatric endocrinology. If anyone could tell us what Wesley’s diagnosis was, we hoped, it was Dr. Buehler.
The nurse showed us to a very large room with a small table for the children to play, some books, and an exam table. I sat at the little table next to Emerson as he watched his portable DVD player. I wished I could be as he was, oblivious to the seriousness of the situation.
I could hear his cowboy boots coming from down the hall. The sounds grew louder as he turned the corner, entered the room, and with a smile stuck out his hand to greet us.
“Dr. Buehler,” Gary said extending his hand.
“Call me Bruce. No one calls me Dr. Buehler except my wife and that is only when she wants me to take out the trash,” he said with a deep belly laugh.
He motioned to the table and we sat down as he opened Wesley’s thick chart. By the time we found our way to Omaha the list of abnormalities discovered within Wesley had grown. New doctors had been introduced and before he was even three weeks old Wesley already had a pediatric urologist, neurologist, cardiologist, and gastroenterologist. He had a social worker, a speech therapist, and an occupational therapist. I had to purchase an expandable accordion file to keep track of all his medical needs. The fuller the file became the emptier my heart felt realizing how much my tiny baby had already been through and was yet to face.
An associate of Dr. Buehler’s joined us and they asked me to place Wesley on the exam table. As a mechanic inspects a car, they examined every inch of his little body.
“He has a high arch and cleft palate. Did you know that?” his associate asked.
I shook my head somberly no.
They excused themselves to confer. We sat in horrible silence waiting.
After roughly twenty minutes they returned with two textbooks in their hands. Dr. Buehler flipped open the gigantic, blue book. With delicacy he looked at each of us and said,
“We believe your son has Rubinstein-Taybi Synrome.”
The room began spinning. Words became incomprehensible. Though part of me knew he had some sort of syndrome when it was confirmed by a physician my entire world collapsed. I could not have known then that the words he spoke would actually be my greatest blessing. It would bring me immense heart ache but also extraordinary joy. It would shape me into a better mother, wife, daughter, friend and human being. Later I would pinpoint that one sentence as the moment in time I began to become who I was meant to be. As it was happening, however, the only thing I could feel was utterly and completely crushed.
I excused myself to the restroom just across the hall. Closing and locking the door behind me I collapsed to the ground sobbing. How could my life, I wondered, have changed so dramatically and drastically in the amount of time it takes to hear a single sentence? I stayed curled up on the cold, bathroom floor for a while weeping for all I lost. My dreams and my family’s future, I thought, were gone. I could not imagine I would dream new dreams and be given a future far more glorious than one I could have ever created for myself. But hope, you see, had not yet been born.
How I wish I could speak to myself there on the floor with all the wisdom I have found over the last twenty years. I would say…
Hope is coming. Hold on. This child will be your greatest teacher without ever speaking a word. In his weakness you will find your strength. You will be his voice and fight for him with all you have. You will reach a new level of exhaustion. You will want to give up. But then you will persevere. You will become a better mother, daughter, and friend because he was born exactly as he is. This isn’t the worst day of your life. This is the day you become who you were meant to be. Grieve because you have lost a significant dream. But then get up. You’ve got work to do.
After a few minutes I gathered myself, wiped away the mascara that was running down my face, and returned to the exam room.
“Will he be mentally retarded?” I asked with a whisper. (That was the acceptable term back then).
“I don’t like to put labels on kids. It can become a self-fulfilling prophecy. But I would say, yes, he will be,” Dr. Buehler said gently.
“Does he have a normal life expectancy?” I asked. The only thing I could not handle, I knew, was losing him.
“We are not sure, honestly. The diagnosis was named in the 60’s. Both Dr. Rubinstein and Dr. Taybi are alive and practicing medicine. More than likely, though, he will have a shortened life but there is no reason to believe he won’t live until his 50’s or 60’s,” he replied.
We returned home to South Dakota and I immediately called my mother who was half way across the country. I could hardly speak as my tears were violently escaping. It would be the first time I spoke the words:
“My son will be mentally retarded,” I sobbed.
“So what?” my mother replied calmly.
There it was. Hope was born in despair.
“So what?”
She said it so matter of factly that I might have just as easily told her his eyes were green and I hoped they would be brown. Those two words simultaneously backed me off the ledge and put it all in perspective.
So what if my child would not learn as quickly as the others? So what if he might hardly learn at all? So what if I might have a perpetual child? So what if he was going to be cognitively impaired. So what?
My mother’s words handed to me another pearl for my collection. By itself it is still beautiful but not as it was meant to be. I would save this one and add it to the unbreakable string along with my resolve to create a priceless adornment.
When an irritant enters an oyster or clam, it’s natural defense mechanism secretes a fluid to coat the irritant. Layer upon layer of the coating is deposited until a pearl is formed (pearls.com).
God can and does instaneously hand me pearls. Other times the jewel must form slowly and methodically as I face adversities as minute as an irritant or as seemingly insurmountable as a formidable foe.
Wouldn’t it be wonderful if our natural defense mechanism was to create something lustrous and valuable from adversity? That is not my truth. My truth is it takes incredible effort. It takes conscious decisions that are not my natural instinct. I must choose to see the good even when it feels nothing but bad. I must choose to hold on to hope. I must choose my perspective and change it accordingly. I must choose to not allow bitterness and anger come close. I must choose to battle when they do come. And they do. I must choose patience to endure. I must choose to hold to the promises of dreams unrealized. I must choose gratitude. I must choose resilience and perseverance. I must choose to be unconquerable. I must choose faith. I must choose the only way that I, personally, know how to obtain all those things. I must choose God.
Each and every time.