Yay for facebook

If it weren't for facebook I would have no idea what my oldest looks like these days-lol. I am particularly enjoying the pink shirt he is wearing. Generally, he is the photographer and as a result is rarely photographed. Until he comes home, that is!

Sarah is doing better with the Tobii. She gets what she is supposed to do. Sometimes she is right on with the device and her eyegaze and othertimes she just doesn't want to activate it. Not sure why.

We are having a 'bed' issue. Suddenly, like in this past week, she is all over her bed at night and during naps. Meaning, she hitches herself up to the top right corner of the bed or turns herself sideways in the bed. The problem with these two things is that she gets jammed against the wall, and most of the time it is her face that is plastered to the wall. And she cannot fix herself. At all. So she waits quietly for one of us to find her. Uggh.

I have to replace her video monitor as the other one wore out, so that will help us during the daytime hours. But at night when I am sleeping is the biggest problem. A bigger bed for her is not the solution cause she will still go right to the top corner or over to the wall. So I am sleeping lightly these nights. I just don't understand what this sudden burst in activity is about. But she is a girl on the move!

What to do, what to do......to keep her safe?

Gold

Gold light is very pretty, changing her eyes from blue to green and making eyelashes glow.

Tis the season...

...for birthdays. Lots of summer birthdays in our family. Cakes, gifts, wishes. And the best thing is that we are all still here to have birthdays. Woohoo!




It continues to be a very quiet summer for Sarah. The humidity keeps her mostly indoors but sometimes in restaurants or malls. She seems very happy though.




I have a little group of wonderful, caring souls who care for her while I am at work: John, Aunt Ali, Kelly, Christina and Cylin. Each is unique, bringing a different personality to the table and keeping things fresh for Sarah.




So her variety this summer is not where she goes, but who comes into our home and interacts with her.




As I plan to always keep Sarah in her own home and bring people in to help me care for her, this is a good thing for her to get used to. She is doing really well with it.

John

John's girlfriend, Christina, came for a visit. She is very sweet. She's from Missouri and attends college with John. This first photo was taken when he traveled to DC a couple of weeks ago. She has an internship for the summer there.



These two shots I took just after they got home from the beach and right before she left. They had fun.

Peaceful

It's a quiet pause in the humid summer. Just the chirps of birds, the occasional motorcycle and distant lawnmowers. John is traversing the cape with his girlfriend and Jimmy is an usher at one of his friends' wedding in NY. They are busy, busy, busy. And very happy. So that makes me happy.





And we girls are resting. Hanging out. Painting fingernails and reading books. Cooking and watching movies.




And music. There's always music.

I love

I love that when I carry Sarah down the hallway, her curls bounce.

Jimmy

I miss him so much my heart hurts. But when I look at this candid photo someone snapped of him down in DC, I can't help but smile. I think it's the way it caught the glint in his eye, the spark that gives Jimmy his firey spirit. The look in his mischevious eyes that says 'I am up to no good'. Ha!

And I smile some more.

So I will continue to look at this picture until the day he walks in the door.

My sun.

We struggle

For the next month I am trialing the Mytobii C12 with Sarah. This is an eyegaze communication device. I have this for one month to see if she can use it appropriately. If so, it will be purchased.

If so.

We've had it 3 days. I am struggling with it. Sarah is struggling with the idea of it.

It is a computer. A complex piece of technology. And technology freezes, changes screens, stops working, runs out of battery time, doesn't respond, is too loud, is too quiet, moves too quickly, takes too long to boot up....and so on.

As far as Sarah is concerned...her thoughts currently include 'What the heck is going on? Why does she keep putting this in front of my face? Where are my little flashcards? What, exactly, does she want me to do? And if I put my head down, will she go away?'

Yup, we are having a grand ole time.

And the fun has just begun! We have 27 more days of this. I haven't told Sarah that though :)

John has been very helpful with us girls. Brainstorming, offering suggestions and encouraging Sarah.

We think she can do this, once she gets the concept. In a little more detail, Sarah has always communicated with us by touching words on flashcards. The operative word here is 'touching'. She is used to using her hand to make choices. Now, I want her to use her eyes.

Her eyes.

Therein is the issue. And I am pushing the issue. Because she could do so much more with her eyes.

And I want to give her more.

I want to give her everything.

Almost 14, she is

As Sarah's birthday rolls into view, I remember. I remember the delight of such a sweet little one. I remember presenting her to her two brothers, physically handing them their baby. I remember their excitement, their softness with her. Their love.

Love. Because that's what it's all about.

All. About.




And for the next few months we got to know our girl and she became permanently cemented into our hearts. Jimmy was 12 and so proud to help me make bottles, change diapers and put her down for naps. John was 8 and he specialized in entertaining Sarah. He was her buddy. She had special smiles for John.




And then we realized she was not developing like other babies her age. Jimmy came home from a friend's house one day, and he was concerned. "Mom, Matt's little sister is Sarah's age and she can sit up, why can't Sarah?" We had the formal developmental evaluations, blood tests and neurological visits. And from beginning to end no one found any answers or had any predictions. She was given various diagnoses for insurance purposes, but none of them explained the big picture.

I remember driving down the street with Sarah in her carseat in the back. I could see her in the rear mirror. I remember looking at this lovely 2 year old, with long blond banana curls, round blue eyes and pink cheeks. She was humming to herself, smiling and eagerly looking out the window. She was so, so very dear. So content, so sweet. So vulnerable. She had no speech, could not crawl or walk, entirely dependent on us in every way.





I remember staring at the road ahead, thinking "My little girl has epilepsy, cerebral palsy and autism...all rolled into one" And for a moment I panicked. After all, those were very dark, scary, ominous words. All jammed into one little person. They were words I didn't know enough about yet, but still they were words that frightened me nonetheless. Words of doom.

And then I looked back at her once again and saw the child we loved so very, very much. A happy child. A sunny child. A child who portrayed none of the darkness. It seemed entirely irrelevant to her. And suddenly, those words didn't seem so important anymore. Because in spite of them, Sarah shined. Shined brightly and strongly. Her little lioness self. Bringing such joy.





And that was the turning point for me. From there on out, I didn't care what 'they' called 'it', my focus was on Sarah and she was awesome. Words meant nothing, Sarah meant everything.




Because, in the end, what is it really all about? What you can do and can't do? What words you are able to speak? What you buy? Where you live? What you own? Nope. It's about feelings. It's about giving and sharing. It's about being present and living.

And loving.

That's what it's all about.

Snippets

This 'n that. Here and there. Bits and pieces. Of stuff.

First of all, it's HOT. Ridiculously hot. And terribly humid. Which means the outside air is off-limits for Sarah. Like 60 seconds is all she can take before she starts to cook. I have AC running fulltime all over the house and in the car. In fact, I have to AC the car before I put her in it. And then there's the wheelchair situation in the trunk...... That thing is boiling hot and I am so, so careful not to burn her when I put her in it. Sometimes I cram it in the backseat of our car to cool it off with the AC(making sure it does not touch Sarah) before putting her in it at our destination.

Seriously, it is much easier to just keep Sarah home and indoors but the girl needs to get out.

John is home from DC and, as usual, Jimmy, as the host, did not disappoint. He took John and his girlfriend out to eat, swimming on a rooftop pool, to see the fireworks from another rooftop and other things of which I have no idea :) John came back with a brown, brown tan that apparently happened while wearing sunscreen? This is what I am told, lol. His girlfriend, Christina, will shortly be heading up here for a visit.

The highlight of Sarah's Fourth of July was watching the Boston Pops and fireworks on TV. I pull her up real close and turn up the sound and she is just so excited. Exclaiming and giggling and singing as only Sarah can :) She loves orchestras with all the different instrument sounds. It is wonderful to watch her. Of course, we had the traditional cookout earlier in the day and Sarah, being a huge fan of good food, had quite the meal for herself. She even tolerated the noise of a group and a barking dog. So it was an awesome day for her.

This month we will trial the Mytobii with her. It is a computer that utilizes eyegaze. I am interested to see if she can communicate with it. If not, I will go with the Ipad for her. So, a decision will be made very soon. Yay!

I took her to the orthodontist to discuss her 'situation' with her teeth. He feels that if one extra permanent tooth is pulled out on the top, then the front teeth will migrate back towards where they belong.
(Yes, she has an extra tooth. God has a sense of humor! "Yes, let's give this child an extra tooth because she does not have enough going on!")
If Sarah's teeth do not move back on their own he will put brackets on the front teeth and pull them back. I am very excited for this to happen, it will improve her appearance dramatically. She has lovely, large, strong, white teeth with not one cavity, but they need to be reined in. She would not be my child if she did not have such an overbite. Both boys had the same thing. John's was worse than Jimmy's.

So the next step is to see if the oral surgeon can pull that tooth without anesthesia. I'm thinking nitrous oxide, novocaine and some valium? We shall see. But it's coming out one way or another. It has to.

This is Sarah's cousin Gavin and his dog Regis.



And Sarah



Surveying her kingdom



And Regis



And Miss glamorous Sarah




With her Aunt Ali



And attempting to play the piano



Sarah loves loves loves the sound of the piano. It's her favorite instrument. I may need to take it up again, for her. I used to play long ago.

And he's off!

This week I had the pleasure of bringing my second born child to the airport. I have always loved taking the boys and seeing them off and then receiving them upon the return trip. There is the packing, their anticipation, the happy chatter in the car on the way in, the moment of 'are we lost?' and the relief of scoring the perfect parking spot next to the terminal. Oh and let's not forget the moving walkways. Yes, I know, we don't get out much. I love perusing the gift shops and the food courts. And people watching? There is no better place. And Boston's Logan Airport is so clean. And so accessible. The elevators are huge, the walkways wide and the bathrooms gigantic. It's perfectly airconditioned. I could live there.
There is a lot of emotion in an airport. Lots of sad goodbye hugs and excited hellos. Lots of folks running late and then there are the early birds who are waiting for their boarding times.
I remember when I was little and used to fly with my family we got dressed up. Yup! Dressed up! Sister Ali and I in matching outfits and little patent leather shoes, mom in a dress and dad in a sportcoat and slacks. It was a big deal to fly. Now it's casual all the way. Functional. Flipflops and tshirts. Tiny shorts.

And so back to my 'flyer' this week. Mr. John. Off to Washington, DC to stay with his brother Jimmy and also to see his girlfriend. John's sweetie has an internship in DC this summer. So down he went. He's going to have an awesome time. Jimmy is quite the host.

We drove into Logan in record time, parked, had lunch and escorted our John to the security checkpoint. And he was off. So exciting. He hasn't flown by himself before so this was something new. And as usual, mama had tears as she hugged her baby goodbye. I will never, ever, get used to saying goodbye, no matter for how short a time. I've been doing it for seven years since Jimmy started college and I am no better at it now than I was on day one. Where they go, my heart follows. Simple as that. Right now I am down in DC.

Sarah and I strolled around for a while before the long drive back to the Cape. She had a wonderful time. She loves the openness, the airiness of the terminals. She loves the food, the TVs and the hustle and bustle around her. And she is not the only person being wheeled around. There are baby strollers, adults in wheelchairs and also luggage carriers, all being pushed from place to place. She feels a part of the crowd.

And some pictures, of course!