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: