So here's some of the more sobering facts about my sweet girl:
Sarah was a full term, 8.8 pound baby who appeared perfectly healthy. It was only as the months went by that it became apparent she wasn't meeting developmental milestones. No reason has ever been officially found. All tests are normal.
She is considered 'severely disabled'.
Sarah is almost 14. She is the size of a typical 9 year old and seems to be done growing. She's 4'9" and 68 pounds. She is thin, petite. Sarah wears a size 12 toddler shoe.
Sarah needs to be fed. I feed her ground or soft food. She cannot chew. She does not have a gtube, yet. She has always eaten very well, it's just of late that her appetite has dropped off and she will refuse part of her meal. She drinks out of a cup that I hold to her lips.
Sarah is legally blind, but if the words are large enough, she can read them. She has no depth perception. She can discriminate colors.
Sarah's hearing is too acute. Noise bothers her to the extent that it is painful for her.
Sarah can sit in a chair and on a horse. She can stand in a stander. She can roll over. She can take steps if I support her quite a bit under her arms. She cannot stand alone or get herself into a sitting position from lying down. She cannot crawl.
Sarah does not speak. She only makes vowel sounds. She generally does not use her voice for communication (ok, sometimes she will giggle to get my attention :)
The left side of Sarah's body is weaker and tighter.
Sarah can't use her hands for feeding, drinking, dressing, pointing or brushing her teeth. Basically, she can manipulate something in her hands, turn pages of a book, hit a switch and grab a flashcard.
Sarah had bilateral hip surgery at the age of 6. Both hips were pulling out of the sockets. It was a bear of a surgery and recovery but remains successful to this day. Sarah has very tight hamstrings that require botox injections every 9 months so that she can continue to sit. She has mild scoliosis and moderate kyphosis.
She is rarely sick. No respiratory or cardiac troubles. No seizures. Her dystonia is awful though, she has many different types. It is getting worse as she gets older.
She struggles with motility problems, sluggish intestines. It is a battle every day to keep her 'going'. How well she feels each day depends on it. Mirilax twice a day and suppositories are the norm here.
Heat and humidity are the enemy. She cannot cool herself. At all. She turns pale, limp and lethargic. Her body temperature rises. In the summer it is air-conditioning all the time. It is written into her IEP. No fooling around with this.
Sarah has an IEP through the school and has home-based schooling. A teacher comes to the house to teach me and then I teach Sarah. It has worked well for Sarah these past 10 years.
Sarah is a good learner. She likes to learn. The challenge is finding the way to teach her and communicate with her. She has many sight words and reads phonetically. I am looking into an eye-gaze system for her.
Sarah does theraputic riding once a week. It's awesome.
Sarah requires 2 rest periods a day. Time to stretch out and relax, sleep if necessary. It's essential. Sarah generally sleeps straight through 12 hours a night. I adjust her position in the bed a couple of times a night.
Sarah waits for me to get her up from a nap, she waits for me to feed her, she waits for me to suggest we go out in the car, she waits for me to put a dvd on for her, she waits for me to read to her, she waits for me to put her to bed, she waits for me to readjust her when she slides down in her rocking chair, she waits for me to offer her a drink, she waits for me to tell her where we are going, she waits for me to notice she is sick, cold, hot, uncomfortable, tired, hungry.
She is entirely dependent on me in every possible way. Except for breathing. That, she can do!
So that's it, in a nutshell. I do find it stressful to focus on all Sarah's needs, like I have done here. As always, she 'looks awful on paper'. But they are the facts. They have their importance. I obviously deal with them every day, I guess, but I don't think about them. Somehow, it's all irrelevant.
Instead, I see a smiling, happy girl who is the light of my day. It is as simple as that, to me.
