Just before Wesley’s first
birthday he was diagnosed with failure to thrive. At not even 14 pounds the
only option to get him the nutrition he needed to live and to combat severe
reflux, was to surgically place a gastronomy tube (g-tube). His first birthday
was spent in the Pediatric Intensive Care Unit. For several years he was
dependent 100 percent on tube feedings. Eventually he learned to eat but only
food pureed to the consistency of baby food.
At l.e.g.a.c.i eats we
believe part of the inclusion piece is Wesley being able to eat the same
delicious food we do. All of our recipes are developed with his need in mind
and each video will have pointers on how to utilize them for g-tube or pureed
Years ago it was impossible
for Wesley to sit at the dinner table with us. He had to be spoon fed in a
different room because of disruptions and the daily throwing of the food plate.
After much work from the instructors at the Virginia Institute of Autism Wesley
now sits with us at the table every night and feeds himself. He even holds
hands with us as we pray, thanking God for the many blessings.
The journey from tube feedings to sitting at the dinner table was painstakingly slow. But those of us who live in the world of special needs know that progress, no matter the speed or the distance, is a major victory and should be celebrated it as such. It is in our home. So much.
Wesley is my hero every day but last night he also got to be king. Prom king. The dance was held on November 16th, an anniversary of sorts. It was a day of reflection for me. Each and every year I pause in my soul to remember “D-day.” Diagnosis Day.
Wesley had been born three weeks prior by emergency cesarean section. Despite numerous ultrasounds by several physicians including his own father, I did not know my sweet Wesley would have special needs until the moment of his birth.
They brought him over to me wrapped up, barely five pounds. He was weak and limp. In the gentlest way possible, I was told Wesley had several anomalies and needed to be seen by a geneticist. As I lay on the operating room table, not even stitched up from the c/section, I was thrown into a mental and emotional panic. I was thrilled to have my baby but terrified by the words used to describe him. Humans are not designed to feel two such diametrically opposite emotions at the exact same moment but there I was caught in the torrent of them. How on earth could my heart be rejoicing and breaking at the same time?
Unlike his older brother’s birth when my room was filled with flowers and a constant flow of people, with Wesley we had no visitors. Not one person came and no flowers were delivered. No one knew what to say, so they said nothing. How I wished they would have just said something even if it was they didn’t know what to say. I felt completely alone and isolated and that added to the grief I was enduring.
Three weeks later we went to Omaha to see Dr. Bruce Buehler seeking answers. It was November 16th and one of those days that forever defined my life as “before” and “after.”
I could hear his cowboy boots coming down the hall long before he entered the room. Turning the corner, he extended his hand and said with a half-physician half-cowboy air,
“I am Bruce. Please don’t call me Dr. Buehler. Only my wife does and that is when she wants me to take out the trash,” he said laughing.
His colleague entered the room as I placed Wesley on the exam table. My small baby was flipped from side to side and studied. It was very clinical as if they were two mechanics figuring out why a car was stalling.
“Did you know he has a cleft palate?” Dr. Buehler asked.
I shook my head no but inside I was screaming “STOP! JUST STOP!!!” Another anomaly. How I desperately wanted them to stop because each time they looked something else wrong was revealed.
They excused themselves to confer and returned 20 minutes later with a large text book. Dr. Buehler flipped it open, pointed to a picture and said, “We believe your son has Rubinstein-Taybi Syndrome.”
Syndrome. There was the word I dreaded. The room began spinning. As he went on to describe the syndrome, I interrupted and asked, “Will he be mentally retarded?”
Dr. Buehler looked at me with compassionate eyes and said, “I don’t like to label children. If you believe he will be an average child with RTS he will be an average child with RTS. But yes, he will be mentally retarded.”
I heard little else he said. Excusing myself to the restroom I collapsed to the ground sobbing.
How I wish I could speak to myself laying there on that bathroom floor seventeen years ago with the knowledge I now have. I would say, “Do not be scared. This journey will make you strong yet soften you at the same time. You have the privilege of entering this new world where love knows no bounds even though no words are spoken. You will be his voice and find your own. He will teach you more than anyone else ever has or will. You will be exhausted. You will cry out of frustration and then try again. You will be a better mother, wife, daughter, sister, and friend because your son has special needs. So stand up. Brush yourself off. Grieve because you have lost a very significant dream but you will dream new ones. This isn’t the worst day of your life. It is the day you begin to become who you were meant to be.”
I lived in one world before Dr. Buehler began his sentence and by the time he put a period at the end I had been thrust into an entirely different reality. It was a foreign land with an unknown language and landscape . This new world had various therapists and a long list of physicians with specialties I never imagined I would need for my child. It had hospital stays and surgeries because every cold would turn into pneumonia. It was a place where I would be told my son had failure to thrive and he would need a feeding tube to live, the first of many surgeries. I would need to learn a new language with acronyms I still try to figure out. I would need to quickly learn medical terms, how to speak to physicians, and to advocate hard for my child.
Three times I would find myself in hospitals crying out to God, begging him to let me keep my son after the doctors shrugged their shoulders and said there was nothing more they could do. Three times God answered “yes.”
We would celebrate his first birthday in the Pediatric Intensive Care Unit. Wesley would learn to crawl when he was 18 months and walk when he was four years old. It would not matter in the least that it took so long. All that mattered was he did and he never gave up. Verbal words would never come other than one. Mom. And that was more than alright with me.
The world of special needs has taught me to take nothing for granted because absolutely nothing is a given. Not every milestone is reached and certainly not according to a chart in any book anywhere. Every accomplishment is a major victory and celebrated as such. Life here is amplified. The highs are exhilarating and the lows are crushing but having the honor of being Wesley’s mom is worth the ride. For I am mother to my hero and he is unconquerable.
I often hear words of pity from those who find out my son has special needs. In reality, it is I who feel sorry for those who don’t live in my world. It is a place where hugs are given freely and genuinely. Love is unconditional and pure. Wesley doesn’t care where you came from, what you did, or your political stance. He loves you because you exist and, therefore, have value. It is a world where love wins the day, everyday.
We have faced incredible challenges, set backs, and brokenness. The two constants that have guided my journey thus far are Wesley’s determination to never give up and my deep dependency on God. Miracles appeared at every hospital room, surgery, and ambulance ride.
Wesley has had miraculous recoveries after the doctors told me he would most likely die. I was told he may never walk yet he did. He consistently proves the doctors wrong. The miracle is my son smiles gigantically and loves deeply despite his challenges. The miracle is I am a better human being not in spite of, but because of special needs.
Other times my miracles were not the ones for which I prayed but no less valid. One steadfast miracle is God shows up. He shows up each and every time. Living in the world of special needs has taught me to look for and, more importantly, find the miracle that is always, always there.
Eighteen years later, to the date, I found myself dancing in a room filled with adults with special needs at prom with Wesley and the man who would love him as his own. Truly, one has never lived until they have been in a room filled with people dancing like no one is watching. It is pure joy and an honor to witness. The world of special needs is a miraculous place. Eighteen years ago it was a terrifying and the last place I ever wanted to be.
The road ahead isn’t always what you think it is. Perhaps it isn’t the road that changes but your heart as you travel along.