Silhouette fun

Sarah's had a few busy days. Fun days for her. The mall, out to eat, car rides. Somehow I am fitting it in between work hours. It is hard, but it makes her so happy. Tonight, we had come in from errands and she was relaxing in her rocking chair, singing softly to herself. I had pulled her hair up in anticipation of her upcoming bath, exposing the nape of her neck. That is my favorite part of Sarah. Just the perfect spot for for kisses under all those loops and curls.

I noticed her silhouette in the window and took a few shots while she rocked.





And now she is bathed, jammied and tucked in, with Mia curled up at the end of her bed...still singing quietly to her little self.

Spring is coming!

For the record, for the Doc

Once in a while we see Sarah's orthopedic surgeon. He did her hip surgery when she was 6. He follows these hips and also her spine. We are headed there soon, my girl and I. He always wants to know how she looks in her stander, so this time I will bring my computer and show him these photos. There are some stretches he would like to see also, to see how far she can go. I will try to get some pics of those too. Since I don't let him stretch her anymore :)

I think she looks pretty straight. I shall see what he thinks.

Spring

And so it is the very beginning of spring here in Massachusetts. Never mind that we are getting 3 inches of snow tomorrow night....I am focusing on the warm sunshine. And so are the crocuses. And Mia. And the birds apparently, because Mia spends hours watching them out the windows. I put Sarah's Trip-Trap chair by one of the doors for her to perch on. She is a happy kitty.






Speaking of kitty, the vet and I are trying a new intervention to try and settle her down a bit, temper her anxiety, give her a better quality of life. It's called M.E.D.I.C.A.T.I.O.N. It's a last resort, but I do see some positive changes. She is more relaxed and less frantic. She is calm. But there is one development that is very curious:

A little background here for you. Mia has always avoided Sarah. Like the plague. She gives Sarah a wide berth, rarely acknowledges her and will not rub up against her feet. If I put her on Sarah's bed for any reason, whether Sarah is actually in it or not, she jumps off and runs out of the room. It has been this way for 5 years. Five YEARS.

After only 3 days on the medication I walked into Sarah's room and see this shocking sight:




This has NEVER happened. Ever. And she stayed there for hours. She has done the same thing frequently over the last week. Sleeping contentedly on Sarah's bed. It is amazing. And I really have no idea why her feeling more relaxed would land her there.

Interesting.

She's returning

If you have a child, do you remember way back to the beginning? When you were handed the little one, took her home and shut the door? When you did everything your way, made your own mistakes and made your own decisions for her? When the child was yours? Completely? When you were everything that child needed?

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 :)

Miscellaneous

The past two riding lessons have gone much better for Sarah. She is, however, a little bit opinionated. She wants to ride outside, not in the ring. So she gets mad in the beginning when we take the turn into the ring. I've told her it is too cold and windy to ride outside right now, but she doesn't care. After a couple of minutes she settles down though and enjoys the ride. Hooray for that!

So we stop frequently, giving her rests. And we don't go much beyond 35 minutes. And it is going really well. We weave the horse through cones and over poles. She is sitting up nicely and full of smiles, very pleased with herself. She loves when she does something well. She sings all the way home. When her stamina increases we will head back outside for part of each lesson. It should be warmer by then.




The boys are doing well. Each caught up in their daily lives. John is job searching for post-graduation and Jimmy is up to his eyeballs in work and coaching. I will see both of them in May.

Mia, our cat, had some immunizations this past week. She is five years old. She is a nut. Being a siamese, she is very vocal. Which is fine. But vocals at night are not fine. Also she is always underfoot or on your lap. To summarize, she is very needy and anxious. So the vet and I had a conversation and he said her behavior is unusual. I have some new things to try and we shall see how it goes.

Is it Thanksgiving?

Gobble Gobble.



Cause we have turkeys.



Strolling around our yard.