This was posted originally on March 31 of this year as a birthday tribute to my daughter. I repost it here in response to Thomas Rogers' Open call: Caring for a child with a disability.

Easter morning. You arrived amid the blooming, awakening of the Earth. You poked your head into the world amid the glorious music of the Resurrection. Your arrival was a little late and more than a little controversial.

You grew, vocalized at your brothers. Learned to shape your environment. We stayed up all night once watching Star Trek reruns because you didn’t want to sleep in your crib. You learned to walk and talk and do all the things the boys did. Endlessly curious, in winter and spring you’d clamor to have your rubber snow boots pulled on so that you could rush outside to crack ice on the sidewalk. In the summer I could find you in the yard on any number of glorious warm, wire-whining days watching ants marching purposefully from food sources to their colonies. Squatting down, you were almost as close to the ground as they.

Mixed with your inquisitive nature was the unsettling way your left leg appeared oddly different from your right. The pediatricians at every visit pronounced you well and whole. But something wasn’t right. After a screening clinic for children with orthopedic concerns, you were referred to the Shriners Hospital in another state. We went with a mixture of trepidation and hope that someone else would finally see that there was something not right. X-rays ordered by the chief of staff showed in high contrast that one hip joint hadn’t formed correctly. Despite the fact that you had learned to walk on time, I could see clearly that there was no mechanical way your hip should work. Soon it would not support you. But they could treat it. You would have to be hospitalized for several weeks and undergo 24-hour a day traction to prepare you for the surgery that could re-form your hip.

I took you home that day and we prepared to face the future. My best friend and I had made plans before the hospital appointment for a camping trip and we were going to take all of you. You and your brothers spent almost every waking moment of that trip on the rocky beach in Maine. We built peak experiences and memories that you could take with you. We sat around the cook fire at night after dinner and marveled at the stars while listening to the music of the Atlantic surf. We ate smoke-flavored steamers at night and had snail races during the day. After a few days, we headed home and soon after that you went into the hospital.

The traction you endured to stretch ligaments made possible the procedure to reinsert your femur into its socket. And that ended in a full-body cast to keep everything stable for three months. It was so large and cumbersome that you and the cast didn’t fit in the machine to have a CAT scan to check the position of the joint. The surgeon was confident that it was right and decided to go ahead without the technological confirmation. You came home encased in plaster and we tried to figure out how to navigate the world of a three-year-old encumbered by several pounds of immovability. Eventually the cast was replaced by braces and you learned to walk again. The frustration of not being able to run and play with other children lead you to watching lots of movies and looking at books. Every book you can imagine. You taught yourself to have a life of the mind.

Time went on. You learned and grew. You became quite adept at wrapping people around your little finger. There were more trips in and out of the hospital. You spent the next Fourth of July in a bed waiting to have a bone scan, watching fireworks from your window and trying to understand Spanish so that you could talk to your roommate. Your constant companions were nurses and the volunteers who would come and do crafts or play board games with you. Fortunately, they didn’t know you had already figured out how to stack the deck when you played CandyLand. You didn’t like to lose.

By now, your surgeon was like a member of our family. The two of you had developed a close rapport. You were always glad to see each other and even though you knew that he would probably cause you pain, you seemed to have an innate understanding that the discomfort of the moment was designed to offer you an alternative to the fate that would have been yours. The scan hadn’t revealed enough information to predict future stability of your hip. The doctor decided to operate again, this time to see first hand what shape the joint was in. We fervently hoped for the best, not even considering that there would be less than the results you and I were wanting.

But in the middle of surgery I was called to a conference room where the doctor met with me while you were still on the table under anesthesia. Your joint was not going to hold. There was no way that just sewing you up and sending you on your way would have resulted in anything but certain dislocation and a future in a wheelchair. He had floated the possibility of a bone transplant, called a Salter osteotomy and offered that option to me now. This was major. I sat in stunned silence because I had not seriously considered this. I asked the doctor if his own daughter was in this position he would recommend the surgery. His response was an emphatic yes. I told him to go ahead and then signed the release his nurse proffered to me. She told me sotto voce that your surgeon had been born with the same birth defect as you and that he had had the same procedures as a child.

Now your rapport with him had more context. It made sense that in the evening after your surgery, while you were still mostly groggy and slipping between asleep and awake, your doctor, the surgeon, the chief of staff of the hospital, came to visit you in your room. The nursing station staff whispered to me in tones of awe that he never came to visit patients in their rooms. It was a rare moment of compassion in a harsh world. He stood at your bedside and told you that you had done very well, that he was pleased. You smiled and went back to sleep.

You put up with another three months of yet another full-body cast, a wheelchair, physical therapy to learn to walk for the third time, more weeks of not being able to run and play with your peers. I fought with your day care provider to allow you to continue attending there while in the cast. You made friends and watched and learned, always a step ahead intellectually, always inquisitive. The months passed, each day a square of time crossed off the calendar, a step toward healing, forward progress toward developing the mental curiosity that would take the place of physical acumen.

Your sixth birthday arrived and found us driving to the hospital for yet another stay. Today you would be admitted and tomorrow morning you would go into the operating theater for what we hoped would be the final surgery. The graft had taken splendidly. The bone which was taken from your pelvis was screwed onto the area of the acetabulum where bone that would have held the femur was missing. X-ray films showed that the bone was growing along with you. A victory. The screws would have to be removed so that you could grow more. Your surgeon was beaming as he took you into the hospital’s large classroom to present you to the residents, attending physicians and other surgeons on staff. I sat in the audience and watched you, so calm beyond your years, as they looked at your films and discussed the plan of action for the rest of your treatment. When the presentation was done, the chief of staff, by now your fast friend, told the assemblage that it was your birthday and that they would be singing “Happy Birthday” to you. They laughed. He stood on the tiny stage next to you and said sternly, “I’m not joking.” They sang.

Next morning the screws were removed. “They came out just perfectly. Beautiful!” exclaimed your doctor. You spent the rest of the day recuperating and watching cartoons but the next morning, first thing, you were up trying to reach for your clothes. When I asked what you were trying to do, you announced that you needed to get up and go to physical therapy, even before personnel were in for the day.

For the fourth time, you learned to walk.

Over the next twelve years I watched you grow. You started school and before long were reading and comprehending on a high school level. You took the SATs in seventh grade. You clamored for a microscope when other girls wanted Barbie or a scooter. There were tears when you couldn’t do things the others could. There was anger. There was sadness. There were flashes of brilliance. In the summer before eighth grade your dad and I put you on a plane to fly cross country, by yourself, to go take a course on the history of disease at a Los Angeles university.

Now you stand at the jumping-off place. The end of high school can be seen. It’s much closer than the waves on the distant ocean horizon that we gazed at long ago in Maine. You have achieved much and are on the brink of so much more. It’s scary at times for you to think that you will be on your own, facing the challenges of the world without your faithful backup by your side. But I have seen you face profound trials for eighteen years. You stood up and walked when the laws of physics and the rules of anatomy said you could not. You learned to walk four times when most children only have to do it once. You proved yourself academically. You made good and loyal friends. And now you are poised to make all of this pay off in the life you choose to make for yourself.

Being eighteen is only the beginning. Your life will have twists and turns, joys and heartache. People will come and go. You will do good work and contribute your gifts to a world that needs them very much. Today you’ll learn to walk again, taking the first steps to embark on the journey of a lifetime. And whether or not I am still here when you attain your goals, I want you to know that I will always be with you and I have always and will always love you.

Happy Birthday, my beautiful daughter.