That's how it was with Sarah. We were sailing along that first year. That glorious year when my biggest concern was what color bow to put in her curls and which babyfood to feed her. I was doing it my way, rightly or wrongly, just as I had done with her brothers. We were in our own orbit. I was enough for her. I was all she needed.
Then the sands shifted, her delays became obvious and suddenly other people's opinions became very relevant to her life. There were the opinions of doctors, therapists, teachers. We had appointments, tests, scans, surgeries and therapies. We were on the go. It was very, very busy. I was a bit out of my element. I now questioned my own instincts and had to consider the recommendations of the medical community. I tried to blend the two. I tried to do what was best for Sarah. And I got used to it. Weighing each issue with a doctor, teacher or therapist. It became what I did. I let them all in. It was a team effort.
And so Sarah grew. Some interventions helped her tremendously and many others made no difference at all. I started becoming more selective in what I choose to try with her. She was resistant to a lot of them. Some set her backwards. It became obvious over time that Sarah was on her own developmental path and no matter how much we prodded and encouraged, she was going to make her gains when she was ready. Or not at all. So I began backing off. Way off.
Recently, Sarah has made it clear to all of us that she wants to be left alone. She just wants to be. Just as she is. Which is interesting timing because her doctor appointments have dropped off almost completely (she is stable), her schooling is entirely at home and her 'therapies' only consist of theraputic horseback riding.
So now I feel that we are done, unless something unexpected happens. I feel this because that's just the way things are going. We are fussing with her less and less. I am comfortable letting her just be herself. And maintaining what we have. She is exactly who she was meant to be.
For her, a good quality of life is a simple life. She likes it small. She likes her home, her food, her videos, her music, her caregivers, her cat. She's happy to venture out occasionally to the mall or out to eat, but not too much. She is very vocal about that!
There is one area of Sarah's development where she is not 'done'. And that would be her communication/academic skills. She loves to learn, she is so pleased when she knows an answer and disappointed when she does not. Learning enriches her life. She loves books and words and language. We are working on the eyegaze computer and shortly the Ipad. But all this is done at home. Just the way she likes it. On her time.
And so we are returning to where it all began 14 years ago. She and me. Home. Doctor appointments are rare, she rides once a week, with just the occasional botox to her left hamstring. Everything else is finished. No more testing, evaluations or interventions or surgeries. Sure, the situation is that she can't do much for herself, but, whatever. That is Sarah. She's happy, she's comfortable and she's home. It's a good quality of life for her.
Just like it was at the beginning. It feels right. She has been returned to me.
Hello, my girlie! Here's lookin at ya :)
