It was such an irony how it happened.
The middle school did scoliosis screening during gym class one day, and as a result they sent home a letter informing me that my daughter had scoli, a curvature of the spine.
So, I manned the phones, found someone I felt confidant with and made all the necessary arrangements. After the appointment where the doctor determined the degree of her curvature and the approach we would take, I received a letter of apology from the school. It seems they sent me the letter intended for another child, and that mine was not affected by this problem.
Okay.....
So, but for an error with the 'system' we likely would not have known she did in fact have scoli, perhaps until it was too late. The word 'scoliosis' brings to mind visions of twisted and gnarled bodies, and unfortunately for a lot of people this can be so. But, her degree of abnormality at this time was so slight that it was unnoticeable to the naked eye. Only X rays and that plastic thing that looked for all the world like a cross between calipers and a spaghetti measurer could accurately determine her plight.
We agreed upon a watch and wait, for it was not anything of concern at the time. Tri-monthly visits showed no change for quite some time, and we were reassured that this is very common among tall thin girls. I was one of those, and didn't have this thing that is normally inherited. The doctors labeled her brand of scoli as 'idiopathic scoliosis', because they didn't know why it happened. In other words, it made them idiots because they didn't know? Medical humor I suppose.
A growth spurt changed her world just as quickly as it did her spine. She suddenly shot up so rapidly that her maturing bones couldn't handle the extra length and a routine check showed us that her degree of curvature had progressed from a '12' to a '38' within a matter of weeks. It's normal to consider operating at '40'.
Quick arrangements were made to visit A.I. Dupont in Wilmington, Delaware, where they verified our worst fears. She was indeed in serious need of treatment. We couldn't have asked for better doctors, or more caring and understanding people. I have nothing but wonderful things to say about them.
They recommended that she be fitted for a brace that she would wear pretty much constantly. We got to see one, to learn about it, to learn what could happen if this did work, and if it didn't. They gave us a box of tissues and left us to absorb the info as the tissues absorbed our tears.
Lindsay was just entering that stage of her life where appearance means pretty much everything. And now she would be encased in hard suffocatingly hot plastic, unable to wear 'cool' clothes, feeling very much like a freak. If I could have worn it for her for the rest of my life I would have.
I remember that we stopped at Wendy's for something to eat on the way home, and sat at the table with our tray of food unable to pass any by the lumps that had replaced our throats. In silence we left.
It wasn't long before we returned for the 'fitting'. It was an experience to be long remembered. They hung her from two bars, lying in a stirrup like swing contraption. Using the X-rays and some lighted guides they wrapped her in casting material. One technician put his knee into her spine to create an indentation that would push against the curve as she wore the brace. I thought that was so funny, as modern as medicine has become, a good old knee was prescribed. They tried so hard to make her smile, to laugh, to let her know that this too would pass.
To a 13 year old suspended by straps being wrapped in hot plaster, life seemed pretty darn crappy.
After they finished she had to walk, while buried in a cast from neck to nearly knees to the X-ray department to see if all was 'straight'. She could barely move one foot in front of another. I wanted so badly to find a Pepsi salesman with a hand cart to roll her there. The more she tried to breathe the more she couldn't. The more she tried to relax, the more uptight she became. She was steaming hot from the cast, I could feel the heat radiating off her body from over a foot away. I think she suddenly had a vision of what the walk to hell would be like.
Next the cast was sawed off and the brace was made. She was to wear it 23 hours a day, with one hour off for showering and exercising. Exercise was important to keep her body strong, otherwise it would become dependant on the brace.
The doctor assured her she would get used to it; she'd be smiling the next time he saw her. Through her tears she nodded, in her mind she was saying, "yeah, right, sure, YOU wear this and smile". We named 'it' Aggie, short for Agony, welcomed it grudgingly into our family, and the three of us left.
She tried to continue dancing, but couldn't bend, and had to give up her classes. She tried to run in the sweltering heat with her hockey stick but several episodes of near heat stroke forced her to put up her shin guards and hopes of team sports. She felt like an aberration, a freak, an outcast.
But, to her credit, she toughed it out, she learned to dress to hide it, she learned to grin and bear it. She realized the severity of the situation. Scolosis is not merely a physical problem; severe curvatures inside can compromise your heart and lungs, causing health issues. Dealing with the visual and emotional aspects was easier when you considered the alternatives.
Oh sure, she cheated now and then and took Aggie off, a dance, a beach trip, but for the most part she was faithful to the regimen. Aggie became simply a part of her. You got used to hard plastic hugs from her.
The internet was a comfort at this time; through it I learned valuable information and she was able to converse with others in the same situation and therefore feel not so alone.
There were moments when Aggie gave us a laugh. We'd go shopping and if it was for something like a bathing suit, of course she'd have to remove it. To put it back on, you have to lie down...in the floor of a three foot by three foot dressing room. If she'd accidentally bump into people she could catapult them across the room.
Every three to four months we returned, X-rays, waiting, and hoping. The doctor was right, she was smiling the next time she saw him. It didn't take many visits to that hospital to see the number of children with problems far outweighing your own, to make you realize just how lucky you are.
AI Dupont is a children's hospital. We saw hundreds of children and their parents who would trade places with us in a heartbeat if they could only have scoli. It took what to us had been the cruelest and scariest problem to deal with, and put it and us in our places very quickly.
And things improved, the curvature actually decreased, as her bones matured, the brace kept them from curving anymore. She had to have another 'Aggie' made, but this time she joked right along with the technicians, embarrassed because Mom was taking pictures. This was a true Kodak moment!
As the years progressed and her bones reached final maturity, she was weaned off the brace. She actually missed it when it wasn't on. It had been a comfort, a support of sorts for her.
She is the child of two tall parents, but will never attain the height she should have. About four inches is inside her, never to come out. You have to really look at her to notice that one pants leg is barely shorter than the other. Her posture is magnificent, shoulders back, head held high.
We still make visits back for monitoring, thankfully we have just been reduced to annual visits. Unfortunately the degree of curvature has slowly crept back up, but they are pretty sure it will stop there. We are hopeful because only surgery remains at this point. She knows she's not totally out of the woods, many years from now when she's married...MANY MANY MANY years from now, when she has a baby, the drain on her body nourishing the infant can cause the scoli to rear it's ugly head.
It's been a hard road, and an expensive one, but it has quite likely been a big part of what shaped her, not physically, but in her manner, in her compassion, in her emotional and mental capabilities, in her perseverance, and her outlook on life. Sometimes you feel like life has dealt you a blow, and in reality it's dealt you an experience.
Each trip to Dupont meant a trip to one of the many surrounding malls, if only I could give Blue Cross those charge bills too, after all they WERE medically induced. Clothing to hide a brace was expensive. Clothing to bring a smile to that tear stained face was outrageous.
Both Aggies are in the attic now, we used to kid that we'd stomp them and burn them, much like a mortgage when you pay off your home. Somehow though, they'd become a part of her, like an old doll. You don't play with them anymore, but you can't part with them.
Won't that be a hoot when the great great great grandkids are digging in the attic and find them? Maybe they'll make a great lamp someday.