We've all heard these expressions. They basically mean you are waiting for something bad to happen. And I think it's normal for most people, at particular points in our lives, to have these feelings.
But when you have a special needs child with physical problems, these feelings can become constant, and can really take over your life; sucking the joy out of everything.
These feelings have been a transient fixture in our lives. When Mishayla was very young, and was going through many procedures and surgeries, Tony and I had these feelings quite a bit. After esophageal, bowel and heart surgeries and procedures, Mishayla would sniffle, or cough, or throw up, or do things that any normal kid (or adult) would do on occasion, and we would be in a panic.
And then there are the trips to the doctor for check-ups. Going to the doctor's office, holding our breath. What will he find this time? More heart anomalies in the EKGs? And why is she so skinny? Will they find Celiac's Disease? What hurdles await us? It could be downright emotionally exhausting.
But as she grew, and these problems were rectified, and she remained relatively healthy. Unlike most kids with Down Syndrome, she didn't have problems with her ears, nor was she ill on a constant basis. She became a fairly normal kid as far as her health was concerned. Of course there was the yearly check-up at the cardiologist, and the gastroenterologist, but other than that, it was the normal trips to the pediatrician just like any kid would have.
But lately we have been holding our breath again. When an occupational therapist at Mishayla's school commented about her oddly protruding left shoulder blade, I didn't think much of it. Why? Because people tend to over-analyze everything about special needs kids. The slightest thing that doesn't look right they insist is a big deal, and you end up back at the surgeon's office, sometimes for no good reason at all.
So she had a protruding shoulder blade, I thought. But one day when I took her to the doctor for a cold, I told her marvelous pediatrician, Dr. Keeler, about it. Sure enough, Dr. Keeler said she needed x-rays. She might have scoliosis.
Scoliosis is an abnormal curvature of the spine, which is not just indicative to children with Down Syndrome. When young girls reach adolescence, and their bodies begin to grow, sometimes the spine can grow abnormally. Sometimes it can be treated with a brace. Sometimes surgery is required.
When the diagnosis was confirmed, and an appointment was set for Mishayla to see a specialist at Gillette Children's Hospital here in the Twin Cities, I spent hours on the internet; looking things up, reading testimonials by parents as well as young girls that had had the surgery. Pins in your spine? It sounded terrible at best.
Now why was I reading about the surgery? Wasn't it possible she would just need a brace?
I suppose so. But with Mishayla, I have to know what the worst case scenario is going to be. I always have prepared myself for the worst. It's the only way I can survive it.
Tony gets very exasperated with me because I do this. "You make yourself miserable before you even know what is going to happen," he says.
Tony doesn't do the worst case scenario thing. He does just the opposite. He does not prepare himself for the worst; he is optimistic that the outcome will be the best one; then if it is worse, he goes from there.
But the truth is, at that doctor's appointment, we were both waiting for that nasty shoe to fall. In spite his optimism, I know my husband was frightened. He gets this look his eyes, his brow wrinkles, he fidgets endlessly. Here we are with the damn shoe again.
Mishayla was measured, and x-rayed, and examined by a wonderful doctor, Dr. Jon Lonstein.
It was true that a brace would not correct her problem, which is a deformity in the upper lumbar spine, with a 62 degree curvature. Her shoulder and head are well balanced, which is a good sign. The only thing that will correct this is surgery, said the doctor. So I was right to expect the worst.
But.......
She is nearly grown, which is shocking. She is a mere 4 feet 5 inches tall, and weighs only 70 pounds. Dr. Lonstein claims this is because 1) she was born pre-mature at 33 weeks, and 2) she had a congenital heart defect (actually she had three congenital heart defects). The fact she is fully grown is good really, because if she is grown, the spinal defect will not move, and she will not need surgery.
We first saw Dr. Lonstein in July, 2011. She has seen the doctor three times now, and there has been no change. We see the doctor, and just make an appointment for six months from now.
"Looks good," he'll say. "Make an appointment for six months from now."
But every time we go, it's the same. Could this be the time the doctor finally says, like doctors have in the past "it's time for surgery; time to correct this problem," taking us back to that familiar place. And as we leave, we say the same words.
"Dodged another bullet," Tony will say.
"What a relief," I always say.
Oddly enough, no one knows the origins of "waiting for the shoe to drop." Some contend it is a modern saying, others say it goes back as far as the Middle Ages.
I frankly don't think we need to know the origins of the term. We've lived it for nearly 13 years.
How do you not live this way? Is there a remedy? I am certainly not the person to ask. I try and make the best of each day when Mishayla is doing well; savor all the wonderful moments as she grows up, and when I leave the doctor's office, I take a deep breathe, and exhale. I am grateful for my daughter, that she is here, that we've survived all we have.
Another hurdle crossed. We don't have to look over the edge of the cliff to see what is down there.
At least not today.
