The magic bear

So this is what I saw when I came back in the living room after making dinner. You may be wondering... Why, is this at all interesting? Actually, when I saw this scene I burst out laughing.
Sarah likes to hold her pink bear down in her lap with both hands. She moves bear from hand to hand while she watches TV, always down in her lap. When she is done with him, she drops him and he lands on the rug.
I do not know what went on while I was in the kitchen, but bear magically was placed precisely on the handle of the rocking chair. And let me just say, he was very precariously, perfectly, perched on the tip. How did he get UP there? Sarah doesn't do UP! And she doesn't place anything anywhere either.

Anyway, it made me laugh. Poor bear. Sarah cracks me up. You never know with her :)

John!

I see him! Do you? That's all I've seen of him in 2 1/2 months. He'll be home soon, but not soon enough for me!!

Sarah and John, 10 years ago

I came across this series of photos I took of the two of them on a warm, July evening. I think they say so much. They were the best of buddies. She really misses him while he is away at college. So do I.

A Day Trip

I hadn't been able to make it to Provincetown at all this past summer. I had much too much going on to get there. And even if I had been able to go, I wouldn't have enjoyed it as I was not relaxed enough.

Today was a gift. To me. It was a beautiful fall day and unseasonably warm and the colors were blazing. There was no wind. Yesterday, it had poured buckets which gave me the excuse to get everything done at home. So, today, Sarah and I were ready to hit the road with the camera. And there was no better place to go than Ptown. The throngs of tourists were gone, the ocean was still. The shops and restaurants were open and not crowded. And Grammy's old house had a fresh coat of white paint, which I hadn't seen in quite some time.
We ate lunch at one of my favorite places, The Lobster Pot, took scads of pictures and of course, purchased the all important 1/2 pound of chocolate fudge, which makes the drive home for us much more delightful!

Sleep, the lack of

This is the goal. Sleep for Sarah.

However, last night it was not going to happen. She was fed and bathed and into bed at a nice bedtime hour-7:30 pm. She had had a good day, all was well. And then. She decided this was a good night to stay up. I went in after one hour and saw this:



And so I settled her down and went back out to the living room to fold laundry. An hour later she was humming and giggling so I padded down the hallway to her room, opened her door and saw this:



All smiles for me, 'Hi mama!!!' she seemed to say. 'Whatcha doing?' "I'm having fun in here!'

So I gave her a glass of water, covered her back up with her blanket and headed out to watch Larry King. Another hour crawled along with the incessent giggling behind her door. Now I am on the computer, chatting. I pause my life and tiptoe down the hall to peek in and see what is going on in there. I see this:



Good lord.

So I give her a little lecture about how it is bedtime and she needs to go to sleep. She listens but doesn't care, promptly busting into another round of chuckles. Grrr. So I get stern and TELL her to go to sleep. Ha! Like THAT is going to work. So back down the hall I go, hoping she will see the light(dark).

Another hour later, there are still gymnastics going on in her room, but with slightly less enthusiasm, I poke my head in again during the 11 o'clock news and finally I see this:



Ahh, we are getting there.

I think she was asleep by midnight or 12:30. And did she sleep in this morning to catch up on those missed hours of beauty time? Nope! Up bright and early, ready to go. See?

So far, so good

No sign of any 'episodes'. It has been 11 days. This is good. Knock on wood. I took her to her pediatrician and he said to keep a watch on her and if she has more 'episodes' to call her neurologist for an EEG. So I wait. Fingers crossed :)

A reprieve

Tonight I took Sarah out for dinner. We rarely eat out as it is just too expensive these days. But, I figured we had earned it after the difficult past few days. We deserved a break. So, we went to our local little place in town. They happen to have really good clam chowder :) We went early, before the dinner crowd, before the rush. We sat in a booth in the bar area. I like the TVs, and she likes the ambiance.
As I sat there feeding Sarah her french fries, dipping them in ketchup and sipping on my coke, I started to unwind. I realized that I was perfectly content and happy at this moment and it made the stressors of the past week all worth it. All the long work hours and worries about Sarah's health. All silenced while we munched on grilled cheeses. No where to go, no where to be, just sitting. And eating. Sarah was very busy orchestrating what she would take a bite of next, happily smiling at some of the sounds in the restaurant, and wrinkling her nose at the carbonation in the coke.
When we were done, I was getting organized to leave and our waitress came over and handed me a giftcard to the restaurant. She said it was from one of their 'regular customers' who wanted to treat us to the next meal we had here. It was given anonymously. I didnt' know what to say except 'tell them thankyou for us'. I had no idea we were being watched :) And I didn't want to look around the room.

It was a sweet day.

Tough day

I knew today would be difficult for Sarah, but not the way it finally panned out. We had her biannual-orthopedic-surgeon-visit. I had expected there to be numerous xrays of her hips and spine, which is a horror no matter which way we look at it. But, joy of joy, no xrays this time. Oh, yay, I concluded. This will be an 'easy' visit. I was already imagining what my dinner would be at Au Bon Pain in the hospital lobby:)
Sarah was well, happy and waiting patiently for her visit. I took some pictures while we waited, which you see here. All was good.
The ortho came in and did his flexibility testing on Sarah's muscles, bending her every which way and that. It is painful for her due to her dystonia, but it takes only 5 minutes and she always does OK with it. Not this time. She turned a shade of white, whiter than white and lost some of her tone. She was in trouble. The doctor had left by now and I just laid her down and let her come around for about 15 minutes or so. I was concerned by this response, but her color returned and we went down to eat. She seemed OK. I knew she was hungry.
Halfway though the meal, she had, what appeared to be, a small seizure. She has never had one before, but this seemed to be one. Some vibrating of her trunk and fisted hands and lots of eye blinking. It lasted for about 2 minutes. And then she ate the rest of her dinner and has been fine ever since.
Me? I am not so fine. I am stressed and tearful, knowing how the seizure monster can rear its head and cause all sorts of havoc on a person's and their family's life. I thought we had dodged the 'seizure bullet' and I have always been so, so thankful for that! And now, it might be knocking on our door. I can't believe it. A nightmare for me. She has so much to struggle against and now it looks like this too.
I am grieving. We have been so lucky up until this point and I have felt lucky, but not now. The wind has left my sails.
Time will tell when another will occur. I must wait and see what is going to happen. How often and what kind. She sees her pediatrician next week for a check up so I will talk to him about it then. Unless something dramatic happens and we are in the ER earlier. I hope not.
For now, Sarah is her usual, sweet, happy self. I so want her to stay that way. Needless to say, we will not be doing any more flexibility exams! As the pain from that seemed to be the trigger.

A sick child

Thousands of miles away
Called me last night
Mama, I'm sick
A mother's heart flips over
And now I wait
For doctor visits, tests
Too far away
Anxiety swirls
Today, no word yet
Excruciatingly difficult
For me
And finally a call
So far so good...
I take a breath
And carry on.

Heaven

This is it.
Simply this.
Entirely this.
For me.
Heaven.
On earth.
Provincetown.
This is my goal
by the end of my life.
To live here.
And I will be happy.
It's in my blood.
My ancestors sleeping in their graves.
This is where Sarah and I belong.
Every day.
Living.

I am.....

...missing this guy :(

Just a pic or two

Riding with Casey

We are back on our fall schedule. Yahoo! Sarah had riding today and it was just the most perfect weather for her. I am trying out a new helmet. It covers more of her head and seems more comfortable. Right now I am borrowing it from the stables, but hope to get her one for Christmas :)
She did great today and rode for 40 minutes. She even let us know when she needed a break and was so happy when we complied. However, she never rested for long, telling Casey to 'Walk on' by tapping his mane.

It's been a while

I know I've been among the missing here in blog-world. And I really have no excuse except to say that it has been a tumultuous summer on this end. I am praying that things settle down for the fall and some sense of order prevails very shortly. I do not do well amid chaos and disorganization. And I find it difficult to be still enough to write. To take pictures. To want to record stressful times.
Everyone is healthy and well thank goodness! It is 'just' the logistics of taking on many more work hours out of necessity and trying to arrange safe, reliable care for Sarah. Her health insurance will be affected, which is scary. It is a complicated puzzle, whose pieces have yet to fall into place. The uncertainty is almost paralyzing and I just have to have faith that things are going the way they are supposed to and that in the end I will be able to keep Sarah's life small and comfortable-just the way she so desperately needs it to be.
And so I don't feel my usual joyfulness these days, I am mostly fearful, which is a rarity for me. But the stakes are very high. Maintaining a young lady, such as Sarah, in her own home takes flexibility, creativity, perseverence, and a healthy income. It's tough to do as a single parent. And I know it.
So there it is.

John's favorite view as we drive around town