(If you want to hear Lori read the story click)

 

14 years ago I had a baby. It was a hard labor, partly because he was 10 lb 11 oz, but he seemed healthy. Benjamin spent almost every minute in someone's arms, and he rarely cried. But neither did he smile, or lift his head, or grab your finger. I cannot exactly explain much less justify my own blindness about how poorly Ben was doing as the months progressed. I thought about it, but somehow dismissed the worries. I wonder if the reason is because God needed it to get really, really bad before He swooped in with a miracle.

When Benjamin was 5 months old we went camping at a California beach with a crowd of other LLL leaders and their children. Saturday was wonderful as we played in the sand and water. But I suspect the other mothers were whispering about my baby behind my back. On Sunday they cornered me.

"Lori, there is something very wrong with your baby." My head started to spin. All of the images of what he was and wasn't doing thundered through my brain. They were dead right. I ripped the tent stakes from the ground, threw the tent and sleeping bags and clothes and children into the van and drove home, sobbing all the way.  I called the pediatrician and got the answering service.

"Hello, my baby is sick. He is not smiling, and is very weak."

"Does he have a fever? "

"No. But.."

"I think this can probably wait until office hours in the morning." Click.

I stayed up all night crying, and drowning in self hatred.

When the door to my pediatrician's office opened, we were there. It did not take the doctor more than a minute to realize this was serious. She could not conceal her concern.


"Your baby has severe failure to thrive. The possible causes fill two pages. I am sending you to the hospital. Now."

We drove to the hospital which miraculously was named Cedar Sinai. I have so many feelings about those words in the Bible... Sinai is where Moses met God face to face. Would God meet me here too? When I walked through the emergency room doors a man in scrubs approached me.

"This must be Benjamin." What did the doctor say on the phone to have them greet us by name???

They admitted Ben immediately and gave him blood tests, an MRI, EKG, urine tests. One doctor was a neurologist who actually has a disease named after him. Dr. Menkes came in wearing a polka dot bow tie and wire rim glasses, and a tuft of white hair. He reminded me of Santa Claus. He rang a bell beside Benjamin's head to see if he would turn to the sound. He didn't.

There was a geneticist who took Ben's family history. Since I have over a hundred cousins and 30 aunts and uncles, and John has almost as many it was more of a family orchard than a tree. It took her three pages to get it all. But what I kept wondering about was the fact that she herself was 9 months pregnant. What would a woman who knows as many risks as she does want to ask of the man who would become the father of her children before she said "I do"?

I never left Ben's side in the 11 days we were there. Neither did I shower, brush my hair or go to the cafeteria. The nurses were kind enough to bring me food. At one point a resident told me that there had been a conference with 12 doctors all studying his case. How could these people work so hard for a little boy who would never say thank you? Never come back and smile?

But the person who saved Ben's life was the endocrinologist. Fran Kaufman was the president of the American Diabetes Association and wrote the book Diabesity. On the seventh night in the hospital another doctor told me that they believed it was Ben's thyroid that was not functioning, but Fran would make the final diagnosis. She would have been there sooner but she was in Sacramento lobbying for diabetic children.

I slept off and on all night, but at six in the morning I awoke to see a woman bending over Benjamin's bed. All I could think was, "She looks great." Her hair was lovely, she had on a scarlet dress and heels. This was in contrast to me. I looked awful. Yet here she was, at the crack of dawn using her consummate knowledge to collect clues for my baby's survival.

"This is definitive. He has congenital hypothyroidism. He has an outie belly button and a thick tongue," she explained to me. "But I have ordered a nuclear scan of his thyroid to make sure."

That day Benjamin had the first of a lifetime of doses of synthroid, the replacement for a thyroid that never gave his body the go ahead to grow. A nurse crushed a small white pill in sterile water, sucked it into a syringe and squirted it in my baby's mouth. I watched intently. But growth is a silent process, and too gradual to pin down.

Ben had synthroid for four more days before the doctors believed that the ever so slight weight gain was an assurance that he would recover.

Because of his brush with death Benjamin immediately qualified for intensive services... physical therapy, occupational therapy, eventually speech therapy. They even talked about hippotherapy. He had 100 appointments between that fateful week in July and Christmas.

While I was sequestered in the hospital with Ben, I was in continual prayer. I wanted desperately to know if he would live. The answer I heard was a cryptic one.

"This child will be carried along on the wave of your family." I did not know what that meant. But now, 14 years later, I absolutely do.

What we did not realize in 1998 was that Benjamin also has autism. It would be three more years before that diagnosis was added to his hefty medical file. The miracle is that because of his early intervention, Ben was blessed with enormous amounts of support that I could not give.

He is both precious and difficult. There are times when I feel too overwhelmed to care of him, and his father or brother will step in and handle a tantrum. Other times I will text his sister and ask her to rescue us, so we can both calm down. Clearly, this child is carried along on the wave of his family, and teachers, and therapists.

Probably most of you do not have a special needs child. But some of you may have a special needs marriage. A friend told me that she finally realized, after 20 years of marriage, that her husband cannot have an intimate conversation. That is special needs. Another woman's husband suffers from seasonal mood disorder and wonders every winter if he will lose his job. That is special needs. Another couple struggles with addiction, yet another with a progressive illness.

I believe it is God's intention that marriages be carried along on the wave of people who care about you. This weekend some 75 people have shown up to offer workshops, to entertain your kids, to serve you, sing for you, and welcome you. They agreed to contribute even before they knew your name. They will offer their dose of skills, or experience, or affection and then hold their breath to see if you grow.

But you are different than Benjamin and those doctors. You have a chance to say thank you.