My Morning Glories, all of them

More reality

2012-01-21T00:15:00.001-05:00

Today Sarah had an appointment with her GI doctor. It was a routine 'once every 4 or 5 months' thing and I thought he'd just exclaim happily over Sarah's new highest weight of 75.5 pounds and then we'd hit the mall. Well, that's not quite how it went. It always happens that when I assume an appointment is going to go smoothly, I am blindsided. Always. Without fail.
So it started out innocently enough. How is she? What's her weight? Does she sleep well at night? What are her 5 favorite foods? Do you think she is having any pain? How many poops a day? And on and on.....So we had a nice little conversation and then I happened to mention that Sarah now sometimes has trouble initiating drinking. She wants to drink (from a cup) but it takes a bit for her to find the neurological pathway to do it. So I wait with the cup at her lips until she can get the swallowing thing going.
Well, his eyes widened at this piece of information and he ran with it: How do you feel about a Gtube? Are you against it? Long story short, it was decided by yours truly that it would be a good idea for Sarah to get one. She doesn't need it right at this moment, but she will soon enough, judging from the clues I have seen so far. It would be much better to do it when she is healthy than when she is in crisis.Of course, she would have to be sedated for the insertion and we all know how that will go....straight to an ileus which leads to an extended hospital stay. However, this is important for her future.
In April, Sarah sees her orthopedic surgeon and physiatrist for xrays of hips and spine. Depending on those results, I will discuss this whole gtube issue with them.
For now, the game plan is this: If, for any unexpected reason, she is going to be sedated, I am to throw myself across the body of this child before they sedate her and insist on GI inserting the Gtube at that time.(GI doc's exact words-lol).
In the meantime, I digest this latest news.

And we did hit the mall, after all :) Nothing like a little retail therapy to help a mama cope.Oh, and some pizza!

Reality

2012-01-02T00:48:00.000-05:00

Happy New Year!

As I celebrate it with Sarah, I realize that she is turning 16 this year. And I am heading to my mid fifties. It is clearer than ever that, at this point, I just want to afford ourselves and maintain Sarah's good health, and mine. That's it. I don't care about any extras, like vacations or new clothes or a gym membership. Maybe it's because I'm getting older and more tired, or maybe it's because as Sarah moves through the teen years, it becomes more imperative to me that she have a good life. What she considers good.

The thing is, she has no diagnosis. So I am uncertain of the course of her physical condition as she approaches adulthood. So I look for clues...... And I am sensing that things are definitely slowing down. She tremors much more, she is stiffer, she now has occasional trouble maintaining the sitting position. I feel that she is quietly and slowly losing ground, as I run to work, do laundry, grocery shopping and read her books. And that brings great sadness for me. And a bit of panic. It's all going by so quickly. Too quickly.

I sense that this was all was written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot.

So I celebrate New Year's with my girl. With joy. Cause we can!

old videos

2011-12-29T12:44:00.001-05:00

Well, my computer is about to kick the bucket. So I am saving pictures and videos beforehand. Here are 2 videos I want to keep so I am putting them here. They are on my facebook, but better 2 places than one :)

Merry Christmas!

2011-12-25T00:11:00.000-05:00

Lifting Sarah

2011-12-12T12:58:00.000-05:00

I do not use a 'lift' for Sarah. Someday I might, but not yet. This is for a few reasons. One is that I do not use a wheelchair in the house for her. She sits in her rocking chair, or at the table in a regular chair or she stands in her stander. And I carry her from destination to destination. It's easier and less time consuming. I keep her moving. It's better for her to have different seating/standing changes throughout the day rather than sit in one particular chair, all the time. Using a lift means having the seating right at the bedside to transfer her into. It does not mean rolling her in the lift to the living room or kitchen to sit in one of the stationary chairs. Moving the lift with her in it for any length of space is unsafe.

So no lift.

I do not have a wheelchair accessible van so Sarah rides in the regular back seat of my car. I carry her from the house to the car and put her in. I do not use the wheelchair for transfer from the house to the car because it's just more lifting to get the chair into and out of the trunk. I keep her chair in the trunk all of the time, like a stroller, for when we are out and about.

So there's the set-up. It's been this way for years. Sarah has stopped growing, so that's a help. But there's one variable that continues to change and challenge me in this whole lifting thing. That would be my age. I cannot do anything about the fact that I am getting older and lifting her is becoming harder for me. Not drastically harder, but challenging enough that I have had to change a few little things to keep going in the past couple of months.

One thing that is different is the way I lift her. It used to be a hoist from under her arms and up to my shoulder. But that is bothering my right arm. So now, it has to be a scoop: one arm under her shoulders and one arm under her knees. That works well. The next thing is how often I lift her. I try to condense some of the lifts. And she doesn't go out in the car quite as much. She still goes out, cause she loves it, just not quite as much. A third thing that's different is that I now have another girl at riding help me with the lifts onto and off of the horse. That makes a big difference. I just cant do it by myself anymore.

So, why this entry about lifting today? Well, Sarah has a dentist appt Wednesday and usually I lift her from the wheelchair into the dentist chair and back again. But this time I will ask them if they can do her teeth while she remains in her chair. I hope so.

Little changes, but changes nontheless.

Tree Trim

2011-12-09T23:57:00.001-05:00

I am sure this is the earliest I have put up the tree in a long time. It wasn't planned to be a 'go' today, we were merely going to check some out at a local lot on our way to dry the laundry (yup, dryer not replaced yet).

However. We got there and there was the perfect tree. Just standing there. So, I figured we might as well just get it now and leave it on the porch. So we drove it home.

John plopped it down and said 'doesn't it need to go in water?' Yup, he was right. Well, then, I guess we might as well put it in the stand in the house. So, in it came. And there it stood. In the stand all wrapped in netting.

I said "you might as well take the webbing off so Mia(kitty) doesn't eat it and so that the branches will fall'.

So John took the webbing off. And there it was. Naked and green. Just standing there.

So I had to decorate it.

And I did.

And Sarah had a ball, with the Christmas music, the silver garland, the lights, the beads and most of all the tissue paper that surrounded each breakable ornament.

Sarah loves the scrunchy sound of tissue paper. As you can see!

And so the tree is up, hooray! And John? Do you think he put any ornaments on the tree? Nope. (OK, maybe one). This was because he had a couple of glasses of wine and looked like this:

HAHAHAHAHA HO HO!

Twas way before Christmas....

2011-12-07T13:35:00.000-05:00

And all through the house, not a creature was stirring at 1:30 in the afternoon.

Everyone is asleep, except for me, cause I am getting ready for work.

Sarah is in the land of sweet dreams. John is snoozing and kitty is napping under my quilt.

Why are they all sleeping in the middle of the day? Well, first of all, it's raining. And secondly, this is Sarah's usual midday siesta.

As for John? He worked from 4 am to 11 am. He came home, cooked some eggs and hit the hay.

and Mia? Well, suffice it to say that she has been sick and $500 later, she is medicated and recovering.

It's been a busy December so far, but we are still on track.

John has an interesting job interview with the NBA tomorrow, down in NJ, so fingers crossed that it goes well.

Like everyone, there is so much to do right now. But I am trying to slow down, enjoy Sarah's health, John's presence and Mia's silence :)

Off to work. Ho Ho Ho!

November

2011-11-29T12:30:00.002-05:00

Christmas is barreling down the highway. And it's so warm here in New England. I have done very little in preparation. Half the lights outside are up. There, that's it, all i've done. Some years I am way ahead of the game but this year is not one of those.

Here's the rub. See those kids down there on the right? They have changed the way I see so many things. Kind of like a kaleidoscope. It twisted a millimeter and now everything looks different. Same stuff, just looks different. Add Christmas to the mix and the differences are magnified.

My life, their life. Completely different. It makes me uncomfortable, all the excesses here. None there. Sure, I knew there were many, many children living in poverty in the world, real poverty. I knew this intellectually, I saw the ads on TV and in magazines. But it was so far removed to me. I was distracted by my own children and the challenging needs of my daughter. I barely kept my own head above water and couldn't have done it without the help of family and friends. Could not have done it.

And yet, here we are. And now that distant issue of struggling children no longer exists. Letters from them come to my mailbox, to me and Jimmy, John and Sarah. They draw us pictures. They tell us about their families, they ask us questions about our lives. They wait for our answers, our letters. And write them, I do. It has become personal.

I think I gasped out loud as we were throwing out leftover food from Thanksgiving plates. Scooping it off into the trash. Everything feels different and I don't know what to do about it.

So that's where I am this holiday season. Betwixt and between. Looking through a kaleidoscope and a magnifying glass. There's no going back.

Billions are being spent in this country on Christmas gifts, people are literally running over each other in the race for the best bargains, I could go on and on but I won't. Suffice it to say that on the 26th it will all be over. For what?

And Kwame, in Ghana, who has no hospital in his community, will still be wondering what, on earth, a Nurse is? That is, until my letter with pictures gets there :)

Now, THAT feels good to me.

Mia

2011-11-20T12:46:00.001-05:00

Mia, our kitty, is funny. She is becoming more and more attatched to Sarah. Like, right-in-her-face kind of attatched. Like, when Sarah naps, Mia naps with her on her bed. When Sarah eats, Mia sits right there, watching. Right there. At Sarah's face.

Yesterday Sarah was out of sorts in the afternoon. This was because I gave her a haircut. Sarah does not like haircuts. She doesn't like the feel of the cutting of her hair. So halfway through, Sarah started complaining, which means a bit of shreaking and some angry sounds.

So Mia starts. Yowling. She is a Siamese so it's quite dramatic. She's walking up and down the hall to the kitchen and bellowing her disapproval of my cutting extravaganza. This went on for quite a while because cutting Sarah's hair takes time. Lots of time. So Mia was all worked up. As was Sarah.
And so John appears in the kitchen to see what the commotion is all about. He got the jist and pretty much turned around and holed himself in his bedroom with video games. LOL.

So when it was all over, I put Sarah to bed to recuperate, which she was very happy to do. And of course Mia was right there settling in at the foot of her bed. And I took to the couch with a cinnamon bun and orange soda.

About 1/2 hour later, I glanced at Sarah's video monitor next to me and I see that Sarah is sound asleep and so is Mia, all curled up in Sarah's blankets. Taking their nap. Wiped out from the hair event. And at that moment, I actually thought Mia was rather sweet. Because most of the time she drives me crazy.

You wouldn't imagine the number of people who become patients at the rehab facility where I work because of their cats. Yes, their cats. This is because they trip over them and fall. And break something, which then requires surgery and rehabilitation. One poor guy tripped over his cat and promptly fell down a flight of stairs and hit his head at the bottom. He is still rehabbing. These are not elderly people, they are generally in their 50s and 60s.

I have nightmares about this. Hoping it is not my fate. Cause Mia is always underfoot when I am carrying Sarah.

So far, so good.

Gender determined!

2011-11-14T14:56:00.000-05:00

Today I received an email from Compassion:

I have heard back from our staff in East India regarding verification of Ashif’s gender and learned that Ashif is a boy. I apologize for any confusion, and we are updating our records at this time to reflect this change. Thank you for your understanding.

So Habiba is actually a boy. And he is called Ashif. Habiba is his last name. I am so glad to finally know this, considering I sent him girl themed things, lol. He is the 'baby' of my bunch, the youngest of my little group. Tonight I will write to him and apologize, and send along some 'boy' stuff.

I'm happy that he is a boy, not sure why, but it just fits.

Silver and Gold

2011-11-06T21:24:00.000-05:00

Eros

2011-11-04T17:33:00.002-04:00

I have been waiting patiently for Eros John's first letter to me. But finally I couldn't stand it any longer and called Compassion. They told me that they had received it on Oct 27 and I should be receiving it shortly from them. And today was the day! I am sensitive to Eros because he has had many sponsors over the years that have dropped him and had never received a letter from any of them. I imagine, on mail day, when the other kids in the center got letters, he did not. And that makes me sad. So I was overly anxious to hear from him that he had received my letter.
He was full of information! He has 2 older sisters and one younger brother, giving me all their names and ages. He wants to be a policeman when he grows up. He gave me his height and weight. He is very tiny for a ten year old. But maybe, not for a Filipino child :) His favorite color is red, his favorite food is bangus(fish) and favorite game is sepa (a version of basketball). Here is his written message to me:

Dear Aunt Lesley,

Thankyou for choosing me as your sponsored child. I'm excited to know you more. I would like to be the friend of elder brother Jimmy, elder brother John and elder sister Sarah. Please write to me often. I'm happy to know all of you.

Love, Eros John

:: sigh ::

He drew me a picture--I'm thinking it is his house?

I adore him.

Ramping Up

2011-10-29T00:25:00.002-04:00

Here we go. Or should I say, here they come. As in, here comes John and here comes the holidays. Which means, here comes Jimmy too.

Preparations are required. John will grace our doorstep on Sunday, following the Northeaster up the coast from New Jersey. He has a pause in his http://www.mlb.com/ career because, did you know, baseball is not a year round sport? Kind of like a teacher's schedule, where there are a couple of months a year that everyone goes home, or takes vacations, or whatever. John's break is Nov/Dec. Yay for me, that's what I say!

So, Sarah, Kitty and I will rejoice come Sunday. I've got all the edible, prerequisite goodies in place because I've got to fatten that boy up. Living on your own, for a guy of 22 years, does not necessarily mean eating well or enough. We will take care of that!

And we will see Jimmy for Thanksgiving, which cannot come soon enough. But now that I think about it, it's right around the corner. And his flight is secured ;)

So forward we go.

In Compassion news, I received my final correspondence 'child' today, assigned to me from India. I seriously need to study up on this country and the culture because now I have 2 from here. Anyway, her name is Amala and she is 20 years old. When I get her picture via email I will post it. She is very pretty...and very grown-up! She is in her last year of schooling and lives at a hostel with other students. Her financial sponsor has only written to her once or twice so I get the chance to do that until she graduates and maybe afterwards, we will see.. Lucky me! I am so curious about her life, her family and her future plans...it's much different than writing to the little ones. I like it.
There is a book I am reading called Sheba's Song. It is written from the perspective of a young girl in India. She grew up in the 70's and 80's, sponsored through Compassion. Over the years, many letters were exchanged between Sheba and the middle-aged couple that sponsored her. At that time, she was quite shy and did not tell her sponsors a lot and did not answer some of their questions about her life. But as an adult, she wanted to finally answer all their questions. And that is the premise of this book. She presents their letters and answers their questions in detail. It's very interesting. You get a good idea of life for Indian girls. An eye-opener.

Did you know that children who receive letters from sponsors save every single letter? They treasure each one, keeping them in as safe a place as possible. They are highly valued by the children and their families, they matter. And that's what sponsors try to convey to these kids--that in the midst of poverty, they matter. They are important. And valued, just like every single letter they receive.

So good all around. Ramping up, as they say!

The Bed

2011-10-24T11:17:00.000-04:00

Well, you've heard about "The Bed". I wrote about it a few posts ago. I was waiting to see if insurance would cover the full size for Sarah. A SleepSafe Bed. And they have decided that they will. So this is awesome news. And a little unsettling too. Change is always a bit nerve wracking when it comes to Sarah. Because usually, when there is change in Sarah's world, it means that I must change how I do things with Sarah. And this will definately be true with "The Bed". It means that I will have to lift her from the bed from a different level, put her in the bed at a different level, do her care while she is in the bed a different way and at a different height, use the side rail in a different way, put her shoes on a different way....so many little things that will be different. It's all in the details, you know. And it makes me uneasy. Because, right now, I have everything down to a science and Sarah knows exactly what to expect and when. She knows how I lift her, how I place her, how I pull her up to a sit. And because of this predictability, she knows which muscles to relax and which ones to tighten and exactly when to help the whole process along. It's like a symphony.

And now, it's all gonna change. Yes, in the long run, it is safer for her. but in the short run....not so good. We are going to be befuddled and out of sorts. We won't know what we are doing or when. She won't like a different mattress or a new view. She won't like that I am unsure how to go about things. She's going to be mad. I am not looking forward to it.

And another thing, it's a little sentimental for me to be changing Sarah's bed. It's like getting a wheelchair. It makes a statement. I love her little bed in the corner with the white siderail and pretty flannel sheets and white dust ruffle. It's sweet and girlie. We've had it for 14 years. And she is in it at least 14 hours a day. What's it going to look like when the monster bed is in there? Ugly? I don't know. Maybe it will be OK.

But this I know for sure: She will be safe. She cannot fall out. And she will have more room. It is better for her. So I guess I better get over myself and concentrate on the adjustment period that is coming. Fun times.

So here's the 'before photo', taken yesterday.

We'll see how it goes.

Wilawan

2011-10-23T11:48:00.001-04:00

I didn't want to let anymore time go by without introducing Wilawan from Thailand. She is now a member of my Compassion Family! She will be 9 years old next month and lives with her grandparents. She is in third grade and helps out at home by making beds, cleaning and buying/selling in the marketplace. She likes dolls, bicycling, marbles, listening to music and playing hide-and-seek. I don't know if she has any brothers or sisters, but that information will come in time :)

I have sent her an introductory/welcome letter with a couple of pictures. I am just thrilled to become a part of her life. Isn't she sweet?

I have received 'first letters' from Kwame(Christopher) in Ghana and Habiba in East India! Each child has their own unique style, which makes it very interesting. Both of the letters are written in english(yay!). Both of these children are too young to write yet, so their communication is written for them by one of the center workers. Each drew a picture for me. Kwame drew a mango(lol) and Habiba drew a pinwheel full of colors. Kwame, in Ghana, has 3 sisters and one brother. He wants to know if I live in a 'storey house'. I am thinking he means an apartment complex? He lives in a little village. He loves soccer. I sense that he is very shy :)

As for Habiba, I do not know the gender of this child. Compassion identifies Habiba as a girl, but the letter I received refers to him as 'a very cute boy'. So I called Compassion and they are sending someone from India down to Habiba's center to find out whether he's a girl or a boy. Anyway, his favorite color is pink and his favorite food is rice and chicken curry. He has one brother, who is 3. He asks me to pray for his mother's health. His(her) father is deceased. Habiba wants to know more about me.

So there we are. I have not heard yet from Eros. Every day I check the mail......

Sickie chickie

2011-10-22T16:40:00.002-04:00

This week Sarah has been sick. With fever and a cold, which involves Vicks, vomiting, a vaporizor, daily prednisone and a doctor visit. Not to mention a decongestant and antihistamine. And a mama who can't go into work. However, I can say today that she is on the mend. All we have left is the vaporizor. Yup, just down to that last gasp. Or cough.
The doctor visit was supposed to be her 15 year checkup but we combined it with a sick visit. She could not get her flu shot because she was on the prednisone so I have to wait a couple of weeks now for that. Luckily for me, they bring it right out to the car in the parking lot, so i don't have to lug her in :)

Sarah is in the 1st percentile for height and weight. How cute is that? My petite girl. Her BMI has improved, so the doc was happy. Here are a few shots of her this afternoon while we wait for the cable guy to hook up John's room.

And lastly, Jimmy was able to get to the World Series Game last night and I received this text :)

.................................................................................I love him.

Sarah's Sunny Sunday

2011-10-09T21:22:00.000-04:00

Rolling along, we are

2011-10-05T23:30:00.000-04:00

Sarah is adjusting to her new room. I still haven't gotten to drawers and closets, but it looks good on the outside. Also, I have to get cable set up in John's new digs. My room feels overly large and empty without my sidekick in there with me. I'll get used to it, if it remains permanent.

Exciting news. I received my first letter from one of my Compassion Kids! Luisa, from Colombia. I was surprised it came so soon. She wrote in spanish and Compassion translated it for me on her paper. She tells me her mom's name is Elizabeth and here dad's is Elkin. She has a brother named Juan Andres. She listed all her friends and their ages. Her favorite food is red beans. She is hoping we will be good friends for a long time (awww). She sends a kiss my way. She has a few questions for me. She drew a picture of herself with me, standing in the grass with sun and clouds. She sent a Psalm.

How sweet is that?

And so this new journey begins. My journey with far-away children. I need to send them all Christmas packets in the next week or so. That way, they will be received in time for the holiday. Also, Eros John from the Philippines, turns 11 on December 24th, so that's on my mind too.

I know I am 'officially' doing the giving, but in reality, I find that I am receiving.

Chaos ensues

2011-09-29T13:33:00.000-04:00

Things are a changing here in the house. People are moving, beds are shifting and vacumes are a running. Kitty is upset, Sarah is perturbed and I am exhausted. And to top it all off, my dryer decided to break yesterday. Does it sound fun to you? I can attest that it is all much more than merely annoying. Are you wondering what started this lovely chain of events?

A spider. Some sort of hungry fella that has decided to take up residence in mine and Sarah's room and bite us while we slumber. I can live with a few welts here and there but Sarah cannot. She cannot tell me she was bitten. She is unable to scratch an itch. She is just miserable. And let me tell you, these bites itch. Like crazy. Yesterday I found one behind her ear and that was the final straw.

So...I moved her out of our room. And into John's. I had to get her out of there. Moving Sarah is an undertaking because there are certain bedding materials that must go with her. And a long side rail that must attatch, very unwillingly I might add, to another bed. And her white noise machine. And her video monitor that must be installed on one of the walls.....it took all afternoon to move her stuff.
So let's just say that Sarah was REALLY mad when I laid her down in that strange room for the night. She took one glance around and pitched a fit. She was not having it. At all. But I had no choice. I had to tear our room apart...by turning over mattresses and box springs, vacuming, mopping and washing endless blankets and sheets and comforters and anything else that could harbor that critter and any of his possible friends.

So I cleaned and she stayed awake until one a.m. pondering the state of her affairs. Finally, she drifted off and I plopped myself on my bed with some strange blanket and pillow I had never used before because all my bedding was in the dryer, soaking wet because the dryer wouldn't heat. Bummer.

This morning, Sarah woke up on a strange mattress, in a blue room with no mama nearby. She started whining immediately, which translated into--get me out of here, i don't like bright red curtains and whose idea was this, anyway???
But I have a thought now. One that she is not going to like, or John either, for that matter. But it must be done. I think.

Sarah is going to have a new bed in the next couple of months, once her insurance gets it's act together. I am very sure it is not going to fit in my room. It is big. Which means it is going to have to go somewhere else, or I am going to have to go somewhere else. Something is gonna have to give. So I am thinking that I will keep Sarah right where she is now for a trial period and see how I like it and how she adjusts. To see if I can hear her when she gets stuck sideways across the bed or in a corner. To see if I can still keep her safe from a distance. Because when the new bed arrives I am NOT going to be able to move it from wherever I have the guys set it up. So I need to know where it is going. Beforehand. And 'beforehand' is apparently now.

And Johnny? Where is he going to go? As part of his work schedule, he will be here, with us, for a couple of months starting in November.(Can I just take a moment here to say Hip Hip Hooray!!!!) And Sarah will probably be in his room. Maybe not. But probably. I don't think he is going to want to bunk in with her-lol.

Fortunately, there is one more bedoom available. It is small but doable. Especially when I clean out the closet and get his stuff all moved in. I have a month to get this all sorted out. And my dryer replaced or fixed. And that spider gone for good. It's an all-up-in-the-air kind of a give-it-a-shot-and-see sort of thing.

We could all go back to the way it was, you never know.

Grace finds Hope

2011-09-24T15:12:00.000-04:00

Not to inundate you with Compassion stuff, but here is a video worth watching.

Grace Finds Hope from Compassion International on Vimeo.

Sarah Lou :)

2011-09-19T13:58:00.002-04:00

Sarah is doing well. She is stable in all ways. I just recently took her to her GI specialist at Children's Hospital. Her weight is awesome-topping out at 73.5 pounds, thanks to vanilla pudding desserts! At this point, she is at a good place with her weight and I really don't want to add any more pounds, she looks good. Yay for that!
Sarah has a new wheelchair. It is the Convaid Scout. It is rugged and foldable, fitting in the trunk. It's a bit of a heavy lift, but doable.

I did get her the clear tray as an accessory and I wanted her to have the more solid, cushy, comfy seat, so we have that also. She looks great in it. I'm not sure if I will use it in the house as well as 'out and about', still thinking on that. I picked the green, which I am really happy with.

Sarah needs a specialized bed. She finally fell out of the one she has been in (twin with xtra long railing). She was leaning on the railing, it popped open and down she went. She was fine but obviously she is no longer safe. This is the bed I want for her, a Sleep Safe Bed:

Ideally, insurance would cover this bed. Not sure how this is going to go. The script for the doctor specifies a full size bed, not a twin. This is because when she rolls she bangs her knees on the wall or railing and gets little bruises on her knees-the twin is just too narrow for her. Insurance only wants to cover a twin size. So this is still pending. Also, I have reauested a white finish instead of wood- i haven't heard that that will be an issue, but you never know.

Sarah seems very happy-I get her out for her weekly riding lessons and for shorter trips on some of the afternoons that I am not working. She likes the low-key life. We are going to head to Provincetown in the next couple of weeks for good food, good sights and good photo opportunities.

Mia, our kitty, has attatched herself to Sarah. Either she is at the foot of Sarah's bed or under Sarah's rocking chair. I think she has figured out that wherever Sarah is, there are blankets and it is warm! Smart kitty.

As always, Sarah's music of choice is Celine. But, she occasionally discovers another artist that floats her boat for a while. That would be Shania Twain right now. Fine with me:) Sarah has also discovered the television show Teen Mom. She loves listening to the girls discuss their issues. It's really quite funny to watch her, watching the girls.

So all is well with our girlie. I am grateful. And on we go.

Ghana Center 232

2011-09-14T11:52:00.001-04:00

This is the center that Kwame attends!

Video Tour of Compassion Project in Ghana from Compassion International on Vimeo.

Very interesting!

2011-09-13T16:32:00.002-04:00

Below is a video of a Compassion center in Ghana. I found it very informative.

Compassion Child Development Center GH231 from Compassion International on Vimeo.

What's up

2011-09-10T23:28:00.003-04:00

So here's the deal. I have fallen in love with Compassion International. Or should I say, the children of CI. There is a link on the right side of my blog. The situation is that I have been wanting, in some way, to GIVE. I didn't know what to give or to whom, but my radar has been up for the last year, to find the opportunity that felt right, that spoke to me. Seriously, I had no idea where to turn. I am so tied up working, making ends meet and taking care of Sarah that I really couldn't imagine what it would be, what I could do, what I could fit into my life. But I had the feeling that it would present itself when the time was right. It has been continually gnawing at me. So patience has been the order of these past months.

And it has paid off, big time. Somehow, I came across the link while perusing a blog. I had heard of CI before, but it had never resonated with me, never really caught my attention. This time it was like being hit with an arrow. I clicked and was hooked. For hours over the next few days.

And I knew that this was for me. Such a perfect fit. As much time as working and caring for Sarah consumes, there is enough time for me to see to the needs of other children in our world. Children who need support, encouragement, attention, letters, communication. Children who live in struggling communities far, far away from me. Children who I will now hold close to my heart. With whom I will have a relationship until they graduate from the program at the age of roughly 22. Children who will benefit from what I have to give. I don't have a lot, but I have enough.

As of this writing, I have chosen to fully sponsor 2 children. Luisa is 8 and lives in Colombia. And Christopher(Kwame) is 6, from Ghana. It is his video that is posted below. And as well, I am now a correspondance sponsor for Habiba(age 6 from East India) and I have requested to correspond with a child from the Philippines. That child will be assigned to me shortly. Correspondence children already have financial sponsors but that sponsor does not write to the child. That's where I come in. I will be that child's source of emotional support, letters will be translated and exchanged. For Habiba and a 'surprise child' from the Phlippines.

Words can not express how delighted I am to be a part of this program and to be given the privilege to make a difference in children's lives. Four children. Four beautiful children. To give to.

This, I can do.

I smile all day long.

Kwame (Christopher)

2011-09-10T13:13:00.004-04:00

GH2320086 from Compassion International on Vimeo.

The View From Here

2011-08-22T21:29:00.005-04:00

2 empty peppermint patti wrappers

groceries on the kitchen table

a sleeping cat

pink birthday cards

folded laundry

painted toenails

an american flag

eggs boiling

a toy piano

a blinking baby monitor

Kidz

2011-07-12T13:38:00.003-04:00

Kidzorg was gracious enough to share my 'Sarah's Story' on their website. Every day I am grateful for the support of parents on similar journeys.

The link is Here

Happy summer!

Hi!

2011-07-11T19:29:00.002-04:00

We are well, lots to post and I will soon, but in the meantime here's a peek from my girl.

Shifting

2011-05-25T13:12:00.004-04:00

Lots of changes around here and yet I feel more stable than usual. Interesting how that has happened. I am centered, focused and calm. And changes abound.
With the steadying of this ship I turn more to Sarah. Afterall, she and I are the only ones left in the boat. And, believe it or not, she could use some attention! My girl has been very patient. These last 2 years I have worked more than I ever have, taking me from her, whether she liked it or not. Yes, it is good for her to have other people in her life, but there's no one like mama.
I have settled into my schedule, I don't feel like I am just 'surviving' anymore and I am able to garner some energy and direct it more fully toward my girl. And so I shall. We will see what she thinks about that!
And with this comes less computer time, for now. Because the time I do have at home will be working and playing with Sarah. We have some MyTobii to work on, eyegaze to fiddle with and academics to pursue. Physically, she is in a good, solid place.

I was asked recently, "Is Sarah happy?"

And I paused. And thought. And remembered how joyful and giggly she was as a little girl. Like a puppy. And now? She is more thoughtful, more mature. Not as quick to burst out into giggles over nothing at all. She thinks. Weighs the scene. She has a ready smile.
But is she happy? Yes, but in a different way. Now I am thinking about it. It is on my mind. I want to be sure. So I am checking in. I am watching and evaluating. Because that's all I want for her.
So there will be less of me here for a bit and more of me for her. And that's OK. Cause I will be back. When I am sure she is happy :)

pics

2011-05-18T18:14:00.005-04:00

Blogger just erased my long, entertaining post about our adventures on the road this weekend. It was John's graduation and I am now too frustrated to write it all over again, so here are just some pictures:

John chose the black borders, I wanted to go with blue, but, hey, it was his day!

Easter

2011-04-25T12:53:00.005-04:00

It was a busy weekend, fun weekend. After going to a Celtics playoff game, John spent all day saturday busing it home for the holiday. For that I am thankful. Saturday was a rainy, foggy cool New England day. Sarah and I colored eggs, which she found fascinating, particularly enjoying the brightly egg-dyed paper towels underneath the wet eggs. She pulled the towel right out from under them and they all flew ceremoniously to the floor. She was quite pleased!
Since John was rolling into town after dinner, Sarah and I packed up and headed to the bus station. I like to park where I can see the bus in the distance as it exits off the highway. There is nothing like the anticipation of seeing your son for the first time in 4 months. Just joy.

And then he was home. The end.

Just kidding!

Sarah was all smiles and giggles to have John in the car. She misses him.
Sunday was finally a beautiful, sunny, warm day. Spring has been a long time coming this year in our area but Sunday was just perfect. We went to the cemetery where my mother is buried and then out to lunch. It was restful and fun.

Orthopedic Surgeon/Physiatrist visit

2011-04-06T23:02:00.004-04:00

Today we meandered into Children's Hospital to see the surgeon who did Sarah's hips eight years ago. We only see him once a year now since she is pretty stable orthopedically.
And her hips and spine look good. Yay! I don't let him bend and stretch her because she finds it too painful, with all her dystonia. So he generally doesn't have much to do but look at xrays of her lovely bones. And stare at her in her wheelchair. And speak about her to the hovering residents, interns and medical students. I know he is always itching to get his hands on her to feel how her muscles respond, but he bows graciously to my wishes. And for this, I am grateful.
But today...today I gave him a gift! I gave him an issue. Something he could sink his teeth into and put his hands on. Oh, I could tell he was pleased.

Her left foot.

When in her stander her toes curl under, she lifts the front of her foot up and basically just weightbears on her heel. That poor heel. I know it is uncomfortable because it is bright red after being in the stander. So I presented it to the eager doc? What to do doctor? Help her. Please.
That's all he needed, he was off. Into the land of hands-on foot manipulation, rotation and pressure. Into the land of a medical discussion. The land of teaching the upcoming docs how to handle a curled up foot. Into the land of botox suggestions and a foot brace recommendation. He was so in his element.
I was happy for him and happy for Sarah. Happy that her doctor is so eager to help her, to make a difference in her life. And so happy to finally give him something he can fix for Sarah.
Afterall, it's been 8 years.

One of those days

2011-04-01T13:34:00.004-04:00

Today is a refueling day. Everything is getting washed in this house. The clothes, the dishes, the people. Everything is getting dried too. And the house will be cleaned, dusted and organized. And I will get groceries.

And at the end of the day, I will put a log on the fire. And light it. Cause it is a raw New England day. A day for quilts.

And Sarah? Well, she will be the not-so-happy recipient of a hairwashing, fingernail cutting, moisturizing event.

And what gets us through this tedious day? Music. Happy music. That makes us smile and sing. Music makes everything easier. So what if it is a gray, cold, miserable day out there?

We are good, in here. Eating cereal. Her favorite.

Silhouette fun

2011-03-29T21:45:00.002-04:00

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

2011-03-28T13:31:00.002-04:00

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

2011-03-22T12:42:00.002-04:00

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

2011-03-13T00:50:00.008-05:00

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

2011-03-09T20:30:00.002-05:00

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?

2011-03-02T00:00:00.002-05:00

Gobble Gobble.

Cause we have turkeys.

Strolling around our yard.

This is why she rides

2011-02-24T13:02:00.007-05:00

This winter, Sarah has had very few riding lessons. This is because of the snow storms that came each week right on her scheduled riding days. It was frustrating, but as it's an hour drive on the highway to get there, I couldn't take the risk.
So now we are getting back in the groove. Yesterday was Sarah's second lesson in a row.

Pause.

It was enlightening and a bit frightening. But she is OK. I'm still recovering.

You see, I generally take her riding quite regularly. We plop her on Casey's cute purple saddle and off we go. She rides in the ring or outside, depends on the weather. We generally do the same manuevers each time...turns, steps over poles, stop and start. And Sarah sits there, seemingly, mostly, effortlessly. She does not hold onto reins, she just balances herself with her feet in stirrups. It looks like she is really doing nothing at all as we go round and round.

But she is doing something. And now we know this for sure.

So, yesterday, she rode outside. Even though it was in the 30s, the sun was very warm. Usually, she rides for 45 minutes. Last week, she rode for only about 30 minutes in the ring because it was very cold. So we were outside, Casey was ambling along, god bless him, and we were about 20 minutes into the 'walk'. Casey took a slow turn to the left and I saw Sarah give a slight jerk to accomodate his turn and then she began to lean over to my side, way over. I tried to push her back up straight in the saddle but I couldn't. She started fussing because she knew she was in trouble. She didn't have the trunk strength to hold herself up any longer. I pushed and pushed but couldn't help her.

OK, so I told the instructor that she was coming down off the horse, we released her feet from the stirrups and she landed in my arms like an infant. Well, we were far from my car or the stables and there was no way I was going to be able to carry her more than 5 feet. She is heavy and dead weight. So the instructor ran off with Casey to get Sarah's wheelchair.

In the meantime, Sarah's chin was down on her chest due to the awkward position that I was holding her in, and I heard her struggling for air. A very deep snore. The strap under her chin from the riding helmet was cutting off her airway. So that was it. I had to lay her down. Sarah and I went slowly down to the pavement, her draped over my legs, and I undid the helmet strap and flung it off to the side.

So there we were. I was sitting on the cold pavement, with Sarah's body lying partway on me, partway on the asphalt, her head in my lap. She accepted the situation and began her ususal hand dance.

The instructor brought the chair and somehow, I DON'T KNOW HOW, we got her off me and the ground and into the chair.

So that was that.

This is what I have learned, because if I don't learn something, then, really, what was the point of this?

1. Carry my cellphone with me at all times. Even during a 1/2 hour lesson. Because I might need to call 911. You never know.

2. Stay close to Sarah's wheelchair after 15 minutes of riding. Or bring the chair to the area where we will be riding.

3. Inquire about another person to accompany us on Sarah's lessons.

4. And finally, Sarah loses ground when she does not ride regularly. It is clearly maintaining her trunk tone.

Imagine what would happen if she did not ride at all?

Today, we are back on track:

Only a few months left

2011-02-13T23:22:00.006-05:00

John is graduating from college in May. College. All over. It seems to have snuck up on me so fast. Where he will live and what type of job he will get after he graduates is still up for grabs. And that's OK. One thing at a time.
It just doesn't seem possible that after May all 'formal' schooling will be complete in our little family. (Sarah has home based schooling) And the group will have officially moved into a new chapter. However, this chapter has no boundaries. It is a wide open book as the boys make their way into the work world and through their 20s.
It is certainly going to be interesting with two out there now floating on the open seas. Jimmy's been out there bobbing around quite happily for a few years and now John will take the jump. I'll hang around and throw the lifering if needed. But I have a feeling they are both going to do just fine.

And here are the boys when it all began, each at age 4!
John is in the pink, Jimmy in the red.

Why Rett?

2011-02-12T22:29:00.003-05:00

I had mentioned a while back that I would put up a list of which of the qualities of Rett Syndrome Sarah displays and tonight I had a little time to write it all down, so here you go:

scoliosis and kyphosis
small hands and feet
breath holding
parkinsonian tremor
anxiety
compulsive hand movements
loss of motor control
poor gut motility
lack of puberty growth spurt
apraxia
loss of hand function
normal head size at birth
blue feet
vacant spells
reduced bone mineral density
nonverbal
innability to chew
dystonia
normal prenatal and perinatal history
teeth grinding
laughing spells
lower limb muscle atrophy
deceleration of head growth in first year
delayed from birth
eye pointing

Here are the ones she doesn't have(yet):

-seizures(not all have seizures)
-disrupted sleep pattern(she requires lots of rest/sleep, more than the average bear, but is that considered 'disrupted'? Not sure.)

Now, granted, kids with all sorts of different issues will show some of these things, but the key here is that Sarah shows all of them, except one or two.

So that's why I stick with Rett.

Sarah is turning out to be a teeny, tiny 14 1/2 year old. She holds at 4'10 inches and 69 pounds. She continues for the past 8 years to wear a size 12 toddler shoe. Her pants have remained a girls size 10 for the past 3 years. She is done growing and at this point I work to keep her weight up.

Lately, there are a few troubling trends. One is that she has more and more hand tremors which is starting to interfere with the one thing she does do purposefully with her right hand: turn pages of a book or magazine. I notice that sometimes she cannot get her hand to turn the page, it just tremors and seems stuck in space. At which point I help her and get it going again. Secondly, she is having trouble initiating a swallow. It only happens when I am giving her a drink. I hold the cup to her lips but it takes her 10 seconds or so to get the swallowing thing going while the liquid drips down her chin. She works hard to do it because I see her hands fist up and get tense. This has never been a problem before. And finally, she is not going to the bathroom unless I give her a suppository. TMI, I know, but it is a worrisome development.
The first problem I attribute to her increasing dystonia, the second to her increasing apraxia and the third? Not sure on that one. The first two make me sad because I watch her struggle to do something which just a few months ago was effortless.

Boo. Hoo.

On a good note, she is happy and healthy. She listens intently to what we are explaining to her and now, she listens to me on the phone when I call from work! This is awesome because before I leave I tell her I will call her on the phone. She understands what I am saying while she listens to me babble on to her about her evening. It's great to be able to connect with her when I am not there. Pretty soon we are going to have to start calling her brothers!!!! Ha! She does not speak, but she is listening.

Her cognition is growing, while her body gets stiffer.

Rett Syndrome is a cruel disorder.

Just saying.

Simply Sarah

2011-02-12T01:48:00.005-05:00

Sarah has never had an MRI of her brain. As in never. Ever. It's not that it hasn't been suggested once or twice or three times in the past 14 years, because it has. And that's the operative word here...suggested.

And I guess, from the outside, looking in, that seems kind of crazy. Not to do an MRI. Because her constellation of issues suggests something neurological. I mean, she can't walk, talk, feed herself, put a piece of clothing on. Her left side is much more affected than her right.

When she was very young I was told many things. At age one, maybe a stroke in utero. Atypical cerebral palsy. She was diagnosed with left hemiplegia cerebral palsy at the age of 2 because everything seemed left-sided. At the age of 4 it went to spastic diplegia CP because it became clear both of her legs were affected and finally at 6, it changed to the worst case scenario-spastic quadriplegia CP because none of her extremeties worked right.

Sometime around the age of five I was told she had autistic features as well. But she would never receive an autism diagnosis because she did not have enough features of it.

The cerebral palsy diagnosis is not right either. We go to the orthopedic surgeon and wait in the waiting room with lots of children who have CP. Sarah does not fit in this group. She sticks out like a sore thumb. But we hang onto the diagnosis for insurance purposes.

Because there is nothing else to use. Nada. Zippo. She has no official diagnosis.

And so, wouldn't you think I would go running to an MRI to see if that will give us a piece of the puzzle that she is. Yes, one would think I would. I mean, I would think I would.

But I don't. My reason now is different than my reason then. And my reason then was because of this event:

When Sarah was about 2 a mom called me who had a son about the same age. She had read that I had piece of equipment for Sarah and she wanted to come see if it would be good for her little boy. I had never met her before. So one afternoon she drove over and brought her son with her. He was lovely and blond and engaging. She placed him on our carpet and he inched his way over to our front door to slowly move it back and forth. She told me that he loved doors. So sweet.

However, she had had an MRI done of his brain a few months prior and all she could focus on was what was wrong with his brain, what it was missing and what it was shaped like. It was like, when she looked at him, all she could see was his brain. It was all she talked about. It seemed that the MRI had taken away her enjoyment of her little boy. Colored it so completely. She couldn't get past it. And see him. I felt so sad for her.

When they left I knew that I did not want an MRI for Sarah. Because I did not want that to happen to me. And I knew it would, if something was found. I would lose my pure enjoyment of my girl. I knew I would and I wasn't willing to go there. Ignorance was bliss as far as I was concerned. Looking back, it was definately the right decision for me. And no one was insistent anyway.

Fast forward to these latest years and the reason becomes more about anesthesia. And how any sedation sends Sarah into an ileus. And at this point we would only be doing it for our curiosity. Which is not a good reason to put her through pain. Not to me anyway.

The Rett Syndrome specialist wants one. His reason? Because if she had a 'normal' MRI, he would then give her a Rett Syndrome diagnosis, even though they cannot locate it yet in her DNA. THAT gave me pause, for about 2 minutes. Is it worth putting her through it for the diagnosis? I decided no. Nope. We can live without it, even though that's exactly what she has, in my humble opinion. And I join support groups and treat her accordingly. She is followed at the RS Clinic at Boston Children's. She is given every advantage.

Sometimes I think it is a good thing to not have a diagnosis. Because then, there are no preconceived limitations. No one knows what her potential is, not the schools, not the doctors. She is just simply, Sarah. And the focus is on the child, not the diagnosis.

So why am I even posting about this? Because I read many blogs concerning special kids like Sarah and it seems that all of them have regular MRIs. So, I just wanted to share the flip side of a child who has never had one and probably never will, unless something drastic happens and it becomes imperative. At which point. I would suck it up and roll her in, anesthesia and all.

The end.

snow

2011-01-25T12:34:00.006-05:00

This has been the snowiest winter! Basically, I cannot take Sarah out because it is too icy and cold. Fortunately, she loves to be home and does not get bored. This is a quiet time of year for us, hence the few posts. But as soon as I type this, something will probably happen :)

Speaking of Joy

2011-01-02T20:42:00.006-05:00

The boys make me laugh. They are funny, without knowing it.

So I walk into John's room after a grueling night at work. It is about 1 am. I am so very tired and drained.

I see this and burst out laughing.

It is so unexpected and so 'JOHN". A neat line of socks. Hanging off his desk. What is this? What is he doing? And the stress of the night just evaporates. I don't know why it strikes me as so funny, but it does. And I am thankful.

The answer to the little soldier socks? They were still damp from the dryer and he was drying them. He is so organized.

And then there is Jimmy. As he was packing to fly back to Washington, DC., he calls out, "Mom, I am leaving a pair of sneakers here because I can't fit them in my bag!"

The next day I open up the closet and I see this, and again I laugh:

Why is there a used toothbrush propped in his sneakers? I know one thing for sure, it means he is coming back. And I am thankful. Thankful that he is planning his return, even if he is thinking he will use this old toothbrush. Which is propped in old sneakers.

I will not replace it, I will leave it just as he left it. And happily anticipate his return in the late Spring.

Much better

2010-12-27T21:08:00.005-05:00

Christmas went very well as far as Sarah was concerned. She became a temporary full time resident of just 2 rooms. Her bedroom and her own special green living room. There was no mingling with guests and family unless they came to visit her. And even then it was one-at-a-time, thank-you-very-much. And please speak softly! I moved her rocking chair, stander, toys, books, dvd player and TV into her living room and she hung out there or rested in her bedroom. I kept the doors shut to the hallway since people were up and down it frequently.

I noticed that after a couple of days I could leave the doors open as Sarah was becoming accustomed to the sounds of the boys and visitors. I could see her listening for them and she seemed to enjoy it, as long as I narrated for her what they were doing.

This arrangement was great for all concerned. The boys could be 'boys', visitors could come and go, ESPN could be on 24-7 and it gave me the time to enjoy the holiday and the family.

This is my brother admiring the christmas cookies :)

John and Jimmy...the best Christmas present I could ever have. They refuel me. They keep me from drowning in the world of Sarah's needs. I am so proud of each of them. They are wonderful with their 'mama'. I've been a little needy lately and they rise to the occasion, bringing me right back into the light-hearted land of fun. Each year pulls them farther and farther from home, but when they do come home...The joy! The joy! The joy! And I once again become more myself.

Our Christmas Eve dinner!

Jimmy and I in masks from New Orleans

John was all about our traditional "Sand tarts"

Sarah relaxing away from the hubub.

Christmas morning!

A tree..and we are on our way

2010-12-19T20:53:00.005-05:00

Well, it's been quite a week but we are getting there. I came down with Sarah's cold, but after a doctor's visit, a throat culture, antibiotics, and two inhalers, I venture to say I am making progress. Sarah seems to be coming along too, so far.
So the tree went up. We have lights and garland and beads. The ornaments are next.

Between picking up prescriptions I spotted Santa.

Can I just share this interesting fact? Santa had long hair. Yes, long white hair. Like, as long as Sarah's. Past his shoulders. Surprisingly, it looked OK. I just thought it was curious. I love watching the children visiting Santa. Some are eager and some are crying. I remember those days.

Oh, here is another interesting thing...while waiting in line to see Santa, the children were able to watch a video that was set up on a tv, right next to the line. Is this what our next generation is coming to? They can't even be expected to wait in line without some type of entertainment on a screen? Wow.

...In MY day we waited in line for HOURS with HEAVY coats on and NOTHING TO DO!!!!! How did we ever survive?

Ha!

I am picking John up Wednesday morning at the Amtrak Station and Jimmy is flying in 'sometime'. That's Jimmy. Last minute Sam. He is enjoying a few days in New Orleans before flying up here to Boston. I hope he takes lots of pictures!

And now for some exciting news...it is snowing! The first of the season, maybe we'll have a white Christmas afterall.

And also, John is turning 22 the day after Christmas! Christmas and John are always intertwined. His due date was Christmas Day, we left for the hospital Christmas eve after I had put Jimmy's presents under the tree. Jimmy was 3 and my mom and brother stayed with him. But because John was such a big baby, it took me an extra loooong 2 hours to bring him into this world, so he was born at roughly 2 am on the 26th. He was on time, but I sure wasn't! So Christmas is always about John too.

And from the song 'O Holy Night', there are the words .....♪Oh, hear the angel voices♪...These are my favorite from any song i've ever heard, because it reminds me to be still and listen. Because that is when you hear, the angel voices.

Christmas?

2010-12-13T12:30:00.002-05:00

OK. I confess. I have not done one thing yet for christmas. No gift purchases and no tree aquisition. Nada. Which, apparently, is not good. Because my girl is now sick with congestion, coughing, paleness... i cannot drag her out shopping in the last minute chaos. Or roll her through a chilly tree lot.

What to do? Online shopping? Probably. The tree will require some thought. And so it goes. It doesn't help that after getting home from work late at night, I get caught up in the middle-of-the-night Christmas movies and don't get to bed till the wee hours of the morning. Which only lasts until 7 am or so because Sarah wakes up coughing. Once she starts, she cant stop until I get her up. So today I can hardly keep my eyes open.

Tomorrow is another day.

IEP

2010-12-11T01:14:00.002-05:00

Sarah's IEP was this morning. There were a couple of people there that had not met her yet, and that was OK. It was an informational session for them. Fine with me, the more people that come to know her in our district, the better.

Anyway, it went really well. I have pulled Sarah out of OT, which they were fine with. And her theraputic riding will continue, which they were also fine with. She remains on a homebound program, with my teaching her, with guidance from a teacher.

Mainly, this year coming year will focus on the Mytobii-using it for communication, academics and fun-time. I want her to practice reading paragraphs and then I want to quiz her on her comprehension. I hope to teach her to work through levels on the tobii, that I program. I want her to be able to tell us to quiet down using the tobii.

Oh, there are so many things....that I want for her....but we shall see what Sarah wants and what she is willing to work for. Because that's what it's all about. Her motivation. Her drive.

The sky's the limit, but if she only wants to go as high as tulip tips then I must be content with that. And I will be, because I will know I have offered her the world, just as I have all my children.

What they do with it is entirely up to them. She is no different in this regard. Ultimately, their lives belong only to them. And I am very respectful of that.

So we shall see.

Taking a breath

2010-12-01T22:32:00.007-05:00

Today was windy and rainy. A perfect day to stay in pjs, watch Christmas movies, do laundry and snack on all the goodies left over from the Thanksgiving week. I cancelled her riding lesson, the wind howled and the sheets of rain washed our windows and the car.

I tried out new YouTube videos with Sarah, we picked our favorites and saved them to revisit later.
I spoke to John, who is back at school, sporting a new knee brace. He has a followup appointment with the orthopedic surgeon right after Christmas. More will be decided then. For now, he is on to final exams and trying to secure an internship for next semester.

And we are refueling here at home. Sarah is back to her rosy self, snuggled up in thick winter pajamas in front of a lazy fire. She is happy. It was grilled cheese and tomato soup for supper, I replayed the Rockefeller Christmas Tree Lighting Special, that was on last night, for her. She loves the singing.

And this is an action shot of our happy, happy girl. I love her happiness. It's contagious.

And now she sleeps.

Happy belated Thanksgiving

2010-11-29T23:16:00.003-05:00

It was, for me, the best of times and the worst of times. As per usual, for me, I focus on the positive. And there was so much positive.

Jimmy and John. Yay! Home. Here was the best moment of the week, for me...

It was the morning after Thanksgiving. It was cool, gray and misty outside. The house was under a foggy blanket. It was quiet, sounds being muffled. Sarah was awake early and so was our kitty, Mia. I got up, changed Sarah and fed Mia. Sarah remained in her bed, chirping happily to herself and Mia, with a full tummy, had curled herself up at the bottom of my bed.

The rest of the house was silent, the boys sleeping. Not a peep. Clothes, computers, cellphones and shoes scattered here and there. Everyone still tucked in.

The house was full.

And I was completely happy. I cracked open a bedroom window a bit to let in some damp sea air and crawled back in under the covers.

And we all rested. Under one roof. It was perfect, for me.

Soon enough, the house would come to life, there would be laughter and breakfast, donuts and phone calls. But that early morning hour was the best of all.

So my Sarah, she had a rough few days. Suffice it to say, holidays are getting harder and harder for her to tolerate. Change in routine and noise. These are big problems. And she struggles. It makes her physically sick. And when the boys are here I want to spend time with them but she requires more attention than usual from me. Can we just say, frustrated? Yup, that's what I was.

But, moving on, John hurt his knee at college and we found out today he has a tear that may need surgical repair. Oh, happy day. More information will be gained tomorrow.

And in no particular order, some pictures from the week :)

Good morning Sarah!!

John's supplies-icepacks, tylenol and a cane

Wearing Jimmy's aviators :)

Jimmy and my brother Jimmy

Mr John Willis

Cousin Brian

And Jimmy

And Jimmy and Regis

Time for a post

2010-11-18T13:00:00.002-05:00

It's been a while. Yes, I know. And Miss Sarah is doing well. She had an eventful week, in the fact that she finally had her extra permanent tooth pulled. The oral surgeon used laughing gas and novocaine injections. And out it came. Hooray! Not a cry, not a whimper...well, maybe a tiny whimper when he was injecting the novocaine. But that was it. She went home with a wad of gauze stuffed in her mouth and that was that.

Now we wait six months to see if her upper lips pulls back those choppers of hers a bit. If not, then we will attempt four brackets on the front teeth to reign them in. Time will tell.

Today she rode. It was such a windy day. She loved the wind, it was a warm wind and she could not have been happier. In fact, it racheted her system up and she remained ridiculously happy the rest of the day and giggled into half the night, finally falling asleep at 11:30 pm.

Thanksgiving is right around the corner :) We're getting ready.

A difference of opinion is ...OK

2010-11-07T20:16:00.003-05:00

The other day we made a trip to see Sarah's GI specialist. She sees him every four months. And he is not that happy with her weight. Not alarmed, but seemed to want me to offer her liquid supplements inbetween meals. She weighs 69 pounds and is holding steady at that weight. Her appetite is good. He wants a few more pounds on her.

He says that for people like Sarah, with her high level of disability ie-no walking, that as they get older through the teen and adult years, they have a harder and harder time maintaining their weight. He said there are three levels of intervention in this case. The highest level is a gtube. The next level would be supplements and the first level would be adding calories/encouraging larger portions of food usually eaten.

He could see that I was not willing to change anything I was doing right now. She eats well and has a pretty balanced diet as far as I can tell. So he backed off. LOL. He could see the Mama Lion beginning to roar.

This is what I told him:

If I give Sarah a liquid supplement inbetween meals, she will not eat her next meal. She will be full. He said that if she was eating a half slice of bread and cheese curls for her next meal, he would rather she had the supplement.

But she eats WELL. Good food. Cheese, meat, vegetables, pasta....

So he let it go. I told him I would rather she ate food than drank liquid. And he appeared to agree. LOL.

And, if someday she does require a gtube for adequate nutrition, I will seriously look into giving her a blended diet of regular food through the gtube, rather than canned nutrition. If at all possible, that is what I will do.

But we are not there yet, I don't want to jump the gun. Right now she is OK. She has finished growing taller, she is maintaining her weight and we shall see.

I pray to the heavens she is still at 69 pounds at our next visit. Ha!

Sarah in Action

2010-11-01T01:28:00.007-04:00

This is a loooong video of Sarah enjoying a Youtube video on her Tobii. I'm posting it here so that if my computer crashes and I have to run it in recovery mode, I won't lose it. Don't feel it must be watched in it's entirety, cause it's all kind of the same thing :)

Here are a few fast facts:

-her voice sounds deep because she has a cold

-she is in her stander, which she spends about 1 1/2 hours in per day

-Mia the cat always has to be in on the action

-She likes being able to stop it and start it by herself, and she likes my talking about it.

-I cannot leave the Tobii lying flat anywhere because Mia walks on it

-I want to paint these walls sky blue.

-Sarah has discovered Sarah Brightman and Andrea Bocelli, which she is listening to here

-Sarah reaches for the right edge of things, hoping she will be able to 'turn a page'

And that is all there is to say about this.

Happy Halloween!

2010-10-31T12:47:00.003-04:00

I learned years ago that holidays are not for Sarah. She does not like the commotion and the NOISE. This includes Halloween. It is not her thing. This includes even giving out candy. People knocking at the door are startling to her. She finds it unsettling and she gets cranky at times. So, happy halloween everyone, but there will be no costumes on this blog-lol. Yes, it's a bummer, cause I loved celebrating it with the boys as they grew up, it was lots of fun. And there were lots of photos and lots of candy to secretly rustle through after they went to bed :)
But those days are over and we are concentrating on the Tobii this week! Tomorrow the represenative is coming out to show me how to make communication squares, grids and pages. I have a lot of questions for him. Meanwhile, I am playing some of Sarah's favorite Youtube videos on it for her and she is mesmorized. She leans in REAL CLOSE to get a good look and is practicing touching it, which then turns the videos off and on. She is having a blast! I am so happy.

My sickie chickie

2010-10-23T21:59:00.003-04:00

We are having a wonderfully quiet weekend while Sarah is feeling poorly. Yes, the weather is beautiful, crisp, shiny yellow and sweet smelling. But we prefer the comfort of the inside, surrounded by blankets, music and yummy snacks.

And, we get to do it all over again tomorrow! Pure bliss.

Spoke too soon

2010-10-23T11:15:00.002-04:00

Yup, as soon as I posted that things were rolling along nicely, she gets sick. Isn't that always the way? It's a cold. Big deal, right? Well, for her it is a big deal, which means for me...very little sleep. Grrrr.
Colds for Sarah lead to problems. Problems such as vomiting, poor fluid intake, ear infections, and croupy coughs. Medications become essential, such as, antibiotics, steroids, tylenol, antihistamines and vicks. And let's not forget the vaporizor! And doctor visits!
So we are on day 3 of this lovely affair. Still gearing up. Such fun :)

Where did she get this cold? Most surely at the pediatricians where she had her checkup earlier this week! Of course! lol.

update

2010-10-20T22:00:00.002-04:00

Sarah is running smoothly. LOL. No, the child cannot run, but all systems are running well. As in ticking right along. She just had a yearly checkup and a flu shot. The checkup was uneventful, mostly bringing the pediatrician up to speed on Sarah's chronic issues, which, thankfully are only simmering right now.
She's hanging at 69 pounds and that seems to be her final weight. As in, adult weight. As in, thank goodness that's all it is. Because we have to lift her. She looks good, slim but not to thin. No one is worried. She's 4'10" tall. She wears a size 11 toddler shoe. The rings she wears are meant for 'little girl' fingers. She has worn the same size shoes and rings for over 5 years now. She wears a gold bracelet that has fit her since she was 4. Still fits on those tiny wrists 10 years later.

My petite girl. With the not so petite teeth and hair. I don't even know what to say about her mane of loops and waves. She was blessed with abundance in that area. Interesting, huh? When she was little and my mom was alive, she would say that the hair was wearing the child. Ha!

Sarah's Mytobii has arrived. I have fooled with it a bit, but waiting for the rep from the company to come out and help me with the setup.

Sarah has discovered Sarah Brightman and Andrea Bocelli, the opera singers. I play their YouTube videos for her on the Mytobii and she loves them. She leans in real close and examines them as they sing. Very cute.

Her school yearly IEP is coming up. It will be interesting as the school is cutting everything possible. They don't do much for Sarah(my choice) but there are a couple of certain things that I want them to continue to provide for her. We shall see. I am not stressing over it. Things go as they are supposed to go. It's up to me how I respond to them.

Unless it is a medical issue, then I kind of freak out and have a hard time remembering that things go how they are supposed to and it is my choice how to respond. In this case, I respond with paralyzing anxiety where I become practically as sick as the child. (Any one of my children, actually). It is a problem. I become a mess. My friends and family are well aware-lol. I have no control over it and that is very frustrating.

Anyway...we are treading water here these days, which is a good thing!

Acceptance

2010-10-12T16:21:00.003-04:00

In one of my online support groups there has been a recent discussion about having a life other than Rett syndrome. And how to do it. Parents had helpful suggestions and ideas for each other. Parenting a child with Rett Syndrome can be stressful. The girls(and a few boys) require a lot of care. Not only that, but it is also difficult to work with some school systems, insurances and doctors. The whole ball of wax can be overwhelming. Not to mention, time consuming. It is a full time job, for sure. People need to get away, take a break, somehow.

So I was reading everyone's emails over the course of a few days. They were supportive and encouraging. People were responding to each other and conversations were enlightening and inspiring. There is nothing better than an online support group if you have a child with special needs. Other parents are the best sources of information and assistance. Better than the doctors, better than the schools, better than the therapists...I have found. If I had given birth to Sarah 25 years ago, I would have felt so alone and lost. There is no other child like my Sarah around here. I would have had no one to talk to. No one to learn from. I would have been all by myself with this very unusual child. So I am grateful for the internet. For the other parents willing to share and listen, willing to give of their time and experiences.

But this time, I was reading this recent thread about 'life other than Rett" and I felt a bit lost. I couldn't relate. But lots of Rett parents could. After a while, I wondered if anyone out there was like me, so this was my email:

I just wanted to chime in here. I think there must be something wrong with me.....it seems like I am one of the few with a special needs child who is not stressed by it. Not at all. Isn't that strange?
I should be stressed! I am a single mom who lives paycheck to paycheck. She is my youngest child(14 years), her 2 older awesome brothers are in their 20s and are living their own lives now(as they should). So it's just me and my girl at home. And a crazy cat :)
I don't know. I am very happy. I am so grateful that she is alive, not in pain and enjoys her days. I work 4 evenings a week and school her at home. I cannot worry about the future. I simply enjoy her day to day. I just drink her in and it fuels me. My main worries are financial, nothing to do with my girl. I am very content with her just the way she is. I have no desire to change her. Odd, huh?
Yes, her needs are full care, full time, with a lot of appointments which are a pain, but at the end of the day we are home and happy to be there. I guess it comes down to the fact that I am quite aware that I could lose her unexpectedly at any time, so I treasure and memorize to heart every day I have with her.
We look forward to when the boys come home to visit. I chat with my girlfriends on the phone, sometimes getting together. I love to read. My daughter loves to take day trips so we do that, she loves restaurants and the mall, so do I!
Mostly, I am grateful. Grateful to have been given this exceptional jewel of a child, so different than most, so sweet. Her smiles make my days. I don't feel like I am missing anything 'out there', I notice that I am happier than most people. Life is short, goes by in the blink of an eye and it is all as it is meant to be.
Isn't that nauseating? I know. I know. I have been asked if I was ever angry, sad or frustrated with my daughter's (and subsequently my) situation. And the surprising answer is No. Never. I am simply thrilled to have her. Cause tomorrow I might not.
I think I am in the minority. Not sure what it's all about, but just wanted to throw it out there.

And surprisingly, there are a few parents like me. But then we wonder, with all this acceptance, are we too laid back for our girls? Are we pushing them enough? I have struggled with this thought occasionally over Sarah's 14 years. But what I have learned from Sarah is that I cannot push her. She does what she can and that's it folks! I give her theraputic riding, an eyegaze communication device, academic instruction, books to read and fun day trips. What she takes from these experiences is purely up to her. All I can do is offer with smiles. She is her own person who knows for sure that her mama loves her just, exactly, the way she is and I wouldn't change her for the world.

This she knows. I couldn't ask for more.

Sunday Funday

2010-10-10T23:12:00.004-04:00

Today we went to Ptown. It was a brisk day with warm sun. My sister, Ali, came with us. We did the usual, strolling around, enjoying the sights, eating and cemetary visiting. Cemetaries are very interesting. Lots of stories there. Ptown has a very old one. In fact, it only has one, but the stones date way back. The pilgrims landed here first, you know. I could spend an entire day in a cemetary, especially an old one. That and libraries. I could spend an entire day there also. Which, now that I think of it, has a lot in common with a cemetary. Lots of reading stories in both places :)

Anyway...it was a nice day. Here are a few shots from the day.

Christmas

2010-10-08T10:24:00.003-04:00

Life is funny. You just never know.

This morning I woke up feeling kinda sick. A little nauseous and a headache. Blah. Just out of sorts. Tired too. It was a long stressful night at work last night and I am feeling the effects this morning.

Sarah is sitting in her rocking chair next to me, watching her Barbie DVD, while I type. Suddenly, I hear Barbie singing a christmas song. And something stirs in my brain, something rises above my dreariness and I feel happy. Just happy. The bleakness ebbs and is replaced by a sliver of joy. Christmas. That's when the boys are home for a few days. That's when I am joyful and animated. Because they will be here. With us. I love that feeling. I love looking forward to it.

What's interesting is that for years and years growing up, it was well known in my family that I did not like Christmas. I could never put into words why, but I just didnt like it. I found it stressful and I felt anxious. Perhaps it is because when I was 10, I was very sick with a stomach ulcer, at Christmas time, and every year after that Christmas reminded me of how sick I had been...or perhaps it was that in high school I was unable to spend Christmas eves with my boyfriend because we were different religions and his parents wouldn't allow it. It's hard to say, but I did not like the Christmas season.

I remember when I had first had my oldest son, Jimmy. My mom said that now I would enjoy christmas because I had a child. Well, it was better, true, but I couldn't entirely shake the Christmas issue. Then came John, who was born the day after Christmas. I hoped that the combo of the holiday and my sweet boy's birthday every year would be the trick. Again, it helped, but not really. I went through the motions but the past was haunting me.

And Sarah came, the years marched in and out, Christmas was OK, but I just wasn't feeling it. Of course the kids loved it, we had family over, we did the decorations, made the cookies and cooked a turkey. It looked great on the outside but I felt sort of down on the inside.

And then Jimmy left for college. Far away. And I only saw him on holidays. And that was when everything changed. It was a weird feeling for me. I was LOOKING FORWARD to Christmas. At first I felt odd, I was anticipating the holiday like everyone else. I didn't really know how to do it. But each year I got a little better at it. The tree started going up earlier and staying up later. I bought some christmas cds. I put wreaths on the house. I started to think about what Christmas was all about. I felt joy. Jimmy was coming home!

Now with 2 boys arriving every year, I am practically ecstatic. Sometimes I pop in a Christmas CD during the year to 'borrow' the feeling for a few minutes.

So this morning, while feeling blah, I hear Barbie singing We Wish You a Merry Christmas and suddenly I feel better. Christmas is coming and so are my boys. Granted, it's still a few months away, but it IS coming. I feel a sparkle of joy and my headache backs off. So now, I'm going to get up and feed my girl, and think about snow and christmas lights.

Yay for Christmas! It's all about family. For me anyway. And I love it. Who ever would have thought? It took me 50 years to fully get here, I feel like I'm 5 years old, anticipating Christmas with clapped hands :)

"You are strong"

2010-10-04T14:17:00.006-04:00

Am I? Am I strong?

My father says I am. My co-workers say I am. And they don't mean physically. Do I feel strong?

No.

My father means it in the general way, as in, he told my son "She is different and she is strong". My co-workers mean it in the way I care for Sarah. All I do with her and for her, I guess. The thing is, I find it such an odd statement. I am strong. Am I? I don't feel strong. Why do they think I am? It implies that taking care of Sarah is HARD, difficult.

Here's what I do feel. Confident. I feel confident. In the way I raise my children. All my children. I am good at it. I love doing it. Mothering. It has 'me' written all over it. I was meant to do it. And that includes any kind of child. At any age.

Enter Sarah Scott.

I am curious why taking good care of Sarah is seen as 'strong'. Would they do any different? Like, not take care of her? What would an 'unstrong' person do? Seriously, what would they not do? Feed her, change her, teach her, protect her, advocate for her?

I am well aware that it is intended as a compliment to me. That I have taken this challenging experience and done well with it, handled it, strongly. I think that's what they mean. But, I think what they really mean is that they aren't sure if they would be up to the task. But the piece they are missing and don't seem to understand is that it isn't a task, an experience or a hardship.

You don't need to be strong at all. You just need to love. That's it. Just love. For me anyway. The rest comes naturally with absolutely no effort.

Well...except for that 70 pound lift multiple times a day :) But according to the doctor she is keeping my back healthy and strong!

So, I guess that's what I want to share. It is a joy, a privilege. And children such as Sarah are a big positive, not a negative. You don't need to be strong to do it. Not at all. You just need to love her. And she makes that irresistably easy.

Period.

It's that easy, even for the weak:)

Kitty, botox and mytobii

2010-09-28T22:18:00.004-04:00

First of all, can you spot the cat? That is Mia. Watching me from afar.

She and Sarah are always watching me. Blue eyes follow me everywhere. Two pairs of them. When my boys are home there are an additional two pairs of eyes. But theirs are green. So then I have four green eyes and four blue ones. It rounds out nicely, don't you think?

Ok now, moving right along...Sarah had botox injections in her hamstrings almost 2 weeks ago. I almost cancelled the appointment because sometimes it helps and sometimes it doesn't seem to. But at the last moment I kept the appointment. And today there were 3 instances where I can say "I think the botox is kicking in!" which for me is very exciting!

Sarah had riding today and she did not fuss when we stretched her over the horse OR when we took her off. This tells me it is much more comfortable for her. Hooray! Secondly, well, when I take her out of the car I use her heels that stick out to push the door shut, but this time, they weren't sticking out, her legs were flat, no bends at the knees! Another hooray! And thirdly, when I placed her in her bath chair, she was sitting straight up, higher than I ever saw her, no tight hamstrings pulling her down into a slump. Woohoo!

So on to the Mytobii. It has been approved by her health insurance!!!!!!!!!! Not her primary, because apparently, they don't seem to think it is necessary for a human being to be able communicate. However, each month I pay a premium to keep her medicaid insurance and this insurance pulled through for us. I am so grateful. I will never grumble about paying those monthly premiums again-lol. So, in about a month we should have the device and I will be in training sessions. Eyegaze is what it will be all about for my girl right now.

The IPad is next, but that will be another post, one thing at a time :)

So that's the good news for our sweetie.

And the icing on the cake? Calls tonight from both my boys checking in on their mamma. They are both doing awesome, I miss them so.

Panoramics? Not in this Lifetime!

2010-09-24T11:44:00.002-04:00

Well, we went to the orthodontist to try to get panoramic xrays of Sarah's teeth. Lately, she doesn't have much tolerance for entering a building and then waiting. She seems to figure that if we are going to go to all the trouble of getting her IN that building, then the least we can do is walk around once we get in there. She wants a tour!
So when I pulled up the the office building, my heart sank. There were a lot of cars in the parking lot, meaning, there were lots of people waiting in the waiting room. Which means it will be crowded and the wait will be long. Uggh. I really did not want to do this. When Sarah gets mad, she yells and shakes her fist and tightens her body, thus effectively sliding herself out of the wheelchair. Not good. And then I am trying to get her waist bent back into the chair she is falling out of...it is not a pretty sight.

But in we went. I had one trick in my Vera Bradley bag (gift from Jimmy). I had some books to read to her while we waited.

The doors to this orthodontist are heavy, there is a threshold at each door and they do not open automatically. Grrrrr. So I need help getting her in. Grrr. But we made it and entered the waiting room. It was packed with patients and parents and it was completely quiet. Not a noise. Silent. Oh boy.

But my girl surprised me. She took a look around and was fascinated by the lights in the ceiling. I whipped out 'One Fish, Two Fish' by Dr. Seuss and everyone in that room was treated to the story as I read aloud to keep her entertained. Oh well, it worked.

Eventually we made it to the panoramic room and she was watching us carefully as we set up for her xrays. However, as soon as the machine started revolving around her head, she started bucking like a bronco. She yelled, shook the fist and basically told us where to go. I stopped the procedure and that was that.

No panoramics for Sarah. Next step: the oral surgeon next week to see what he thinks about pulling a permanent tooth right behind her front teeth. It's pushing the front teeth forward. Not good.

So glad that is over and I am curious to see what the oral surgeon thinks.

Where I have been

2010-09-23T13:29:00.002-04:00

On. The. Couch. With a pinched L2 nerve. Ow. It's been 11 days now and the steroids are starting to make a difference. I am back to work. Yay! The interesting thing is that even though I could not sit or stand without a lot of pain, lifting Sarah was painless. How weird is that?
I haven't even picked up my camera in all this time. And, seriously, how weird is that?

It's all strange. All I did was lean to my left to pick up the TV remote off the couch and I had a searing pain in my left lower back. And it took up residence, for days and days. The pain made me nauseaus and pretty much, I was good for nothing.

But, thanks to an awesome doctor and the almighty steroids, I am doing much better. Five more days of those bad babies and I should be all set.

So, I'll be checking in soon, with something more interesting to talk about.

Her chair

2010-09-08T15:55:00.005-04:00

This is 'Sarah's chair'. An old-fashioned, probably antique, rocking chair. This is where she sits, when she is sitting. This is her third one.

For Sarah's 3rd birthday, I got her a little orange and purple canvas rocking chair. It was cute, tiny and she loved it. She loved it right away. I remember her huge smile when she realized she could rock it herself. That little chair lasted about 2 years before she outgrew it:

(Seriously, how cute is john here, the dimples, the ears, the teeth? Oh my)

And then it was replaced with a larger pretty white rocking chair with flowers painted on it:

This chair lasted even longer, until she was about 10 years old. And now she has her black rocking chair. It was given to Sarah by one of my girlfriends. It had been her mother's, before she passed away. She said her mother would have loved for Sarah to have it. And Sarah loves her chair.

I like it, rather than putting her in a wheelchair. Sarah can shift her weight forward and backward as she rocks, which helps in preventing skin breakdown. I do tuck a pillow under her right arm to keep her from leaning to the right.

So that's why a lot of Sarah's pictures are of her in her chair. In case you were wondering :)

Thinking about Jimmy

2010-08-30T23:07:00.007-04:00

He's mine, yup, he is! No one's ever gonna love him more than I do.

I am my sun sign

2010-08-26T00:30:00.005-04:00

The Crab. Not 'crabby', just THE Crab. That's me. A cancerian crab. Picture it... it scurries sideways, rarely moving obviously forward, but somehow it gets to it's destination riding on the ripples of the ocean near the shore. It has a tough shell, which it uses for protection. Any perceived threat and it pulls inside itself and waits. The more you tap it, the more tightly it tucks in. And it will stay that way until the coast is clear. Rarely does it strike out, rarely is it aggressive. Until it's existance is surely threatened, and then comes out the big claws which will then surprisingly snap someting in two. Snap!

Age six.

This is me. My first instinct during challenging times is to withdraw, become silent, gather myself from within. Let me just be. Give me time. I love my shell! It's always available, dependable and effective. It's comfortable too :) And I like to travel sideways, not straight forward. Directly forward makes me uneasy. It's too fast. Zigzagging gives me time. The time that I need to make decisions and think about their consequences. It allows me to feel in control.

So I am in the middle of zigzagging. Sometimes life just seems to wizz by so fast that I also must to pull into my comfy shell until I can catch up. And contemplate.
And make good decisions. And the clingy crab that I am, I cling to the past, what I know, what is secure.

But Sarah is growing up, the boys are moving quickly and surely into their own lives. And my constant job is to evaluate the future and to configure a way to continue to give Sarah all that she needs. It seems to get harder and harder each year to manage this. And so I ponder, brood, contemplate, examine, and reflect. And I pull inward while doing so.

It's tiring and draining, but it is work that must be done. I'm bouncing around in the waves a little bit, but the water is my home. I was never so happy to see 3 days of rain this week. The fog, the drizzle, the rain on the roof, the downpours, the grey skies, the drips. All of it felt so good.

Soon I hope to pop my head out, and sun myself on the nearest rock, decisions having been made and a plan in place. I long for that day. Until then, all is well, I'm just thinking.

14

2010-08-16T10:16:00.004-04:00

Sunday we celebrated Sarah's 14th birthday. It was done her way:

No party.

14 balloons

14 cupcakes

a 3 hour midday nap

opera music

gifts with no wrapping paper

a yummy dinner at a restaurant

After dinner she wanted to take a ride, so we rode.

We went to the harbor and watched the boats and listened to the birds.

Then a warm bath, a quiet little 'happy birthday' song and finally bed

She was asleep in 2 minutes

It was a perfect quiet day for her.

Oh,

The cat ate the balloon ribbons.

And threw them up all over the rug.

Fun times.

A little outing

2010-08-09T23:07:00.007-04:00

Tonight after dinner Sarah and I took a ride in the car. She is feeling much better and I knew she would love to get out. It was one of those warm, humid summer evenings with the mildest hint of fog hugging our little town.
And so we drove around, with me picking the bumpier roads because one of Sarah's greatest joys in life is bouncing up and down in the back seat as we make our way over bumps. The faster the better, as far as she is concerned, bringing shrieks and laughter.
I really had no idea where we were headed, just meandering along. We ended up at the boardwalk. If you walk it's length, it takes you to the beach. But tonight it was too late to take the stroll, but I so wanted to get her out of the car and into the breezy salt air, just for a little while.
And then I spotted it. A little wooden bench. A perfect little grey, weatherbeaten bench facing the marsh and an inlet from the ocean. Right near the boardwalk. Close enough that she could hear people milling about and unprotected enough that she could hear all the birds and feel the wind on her face.
And so I carried her to the perfect spot and carefully placed her on the bench so she had time to form her body to the shape of the seat. And then we sat. And listened. She laughed. She turned her face to feel the wind. I told her about the birds. And she listened some more.

And a good time was had by all. We will come back.

Still ill

2010-08-06T13:40:00.005-04:00

It's been a very long week here. My girl is under the weather. Smiles are hiding. She is very congested, solemn, pale and tired. She does not want to cough, in fact she tries not to cough. She gazes at me with her big blues as if to say "What's going on mamma? Why do I feel so bad?" I tell her she has a cold, but then I realize she she thinks I am telling her she IS cold, so now I just use the word 'cough'.
I try to reassure her with hugs and kisses and hope she understands that she will feel better soon. And so we are plugging along, hoping this will play itself out without another jaunt to the doctor, hoping the prednisone will keep her floppy airway open enough. Enough to keep us out of the ER.
So the house is messy, I seriously need to go food shopping and the laundry is demanding attention. And I just don't care, which is saying something. I am generally OCD when it comes to tidiness and organization. I like everything in it's place and can't think straight unless this is so. But today, I am soley focused on Sarah and where she's at: getting all her meds into her, getting enough fluids into her, bathing her, feeding her and getting her up into her stander to help those lungs clear.

And trying to get a few smiles. This morning, she finally shared one with me and tears came to my eyes. I miss her so, when she is sick.

She did well

2010-08-03T13:09:00.003-04:00

In the middle of Sarah's sickness we had an important appointment. We have had the Tobii for almost a month and Sarah is successful with it. She is happy to see 'her friend Tobii' placed in front of her. She can do the eyegaze, and she enjoys it.

But, we had to 'prove it' to the Speech Therapist, so the insurance would pay for it. She writes the report that is submitted to the insurance. So Sarah had to perform. Today. Because I have to send the Tobii back in a couple of days.

However, Sarah is sick, and cranky. Not good. She was going to have to ignore her misery and pull herself out of the fog. Well, at least enough to focus on the screen and answer a few questions, with a stranger in the room. I figured things would not go well, which would be a shame as she really can use it.

The therapist arrived right on time, but all Sarah wanted to do was go back to bed. She was sitting in her rocking chair with her head hanging. She had just finished breakfast and that was enough activity for one morning thankyouverymuch!

But, I pulled out her friend 'Tobii' and turned it on. Sarah spotted it from under her lashes and her head popped up, she leaned forward in the chair and reached for Tobii. She was a new girl with a communication system in front of her. Hardly looked sick at all.

I asked her a few questions, she answered like an old pro and she was then rewarded with her most favorite question of all time: Do you want to go to bed? Her very quick response was Yes and her wish was granted.

Success.

Whew. Good job Sarah.

Now we are off to the pediatrician to discuss this cough and her laryngomalacia. After her nap, of course:)

Cough, cough and cough again

2010-08-01T18:58:00.006-04:00

She isn't feeling well this weekend, which is too bad cause it is my weekend off from work, we had some fun stuff planned and it is so beautiful out(ie no humidity). But, here we are, nursing her lousy cough and general malaise. Summer colds are a bummer. It is what it is, so we're making the best of it.

However, I did sneak away, leaving John in charge, to see my nephew's all-star game which was a nice break for me.

This last one is called 'getting hit by a pitch' lol.

Yay for facebook

2010-07-27T11:26:00.005-04:00

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

2010-07-23T14:40:00.003-04:00

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

Tis the season...

2010-07-22T12:41:00.003-04:00

...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

2010-07-18T20:53:00.005-04:00

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

2010-07-18T10:30:00.000-04:00

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

2010-07-17T13:18:00.002-04:00

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

Jimmy

2010-07-15T22:39:00.004-04:00

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

2010-07-14T22:27:00.003-04:00

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

2010-07-10T11:34:00.017-04:00

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

2010-07-08T11:44:00.006-04:00

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!

2010-07-03T18:00:00.007-04:00

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!

All is well

2010-06-30T16:45:00.003-04:00

This last photo cracks me up. I have no idea why. Maybe because she looks so serious. She's usually so smiley. So I like this one.

Anyway

2010-06-19T19:43:00.001-04:00

“People are often unreasonable and self-centered. Forgive them anyway.
If you are kind, people may accuse you of ulterior motives. Be kind anyway.
If you are honest, people may cheat you. Be honest anyway.
If you find happiness, people may be jealous. Be happy anyway.
The good you do today may be forgotten tomorrow. Do good anyway.
Give the world the best you have and it may never be enough. Give your best anyway.

For you see, in the end, it is between you and God. It was never between you and them anyway.”

— Mother Teresa

Fenway Fun

2010-06-16T13:21:00.010-04:00

This week we headed into Fenway Park to watch a Red Sox game. I love, love, love going in. Probably for different reasons than John does, but hey, reasons don't matter, just being there does. So much fun. Lots of people watching, picture taking, walking, game watching, hotdog eating, icecream licking and cheering. The wave went round and round the park at least 8 times, Ortiz hit a homerun and lots of people were wearing Celtics jerseys. John practiced using my camera and got some good shots. He has an eye for photography, even though he doesn't know it yet.

And so without further ado, here are some pics from the night. I can't wait to go back.

And can I just add this? Baseball is FULL of statistics. Yes, it is! And John knows Every. Single. One. Which, after a couple of beers, he is more than happy to share with me. Aren't I lucky?

♥ I think so ♥

This would be our pitcher warming up.

Ortiz swinging(click pics to enlarge)

Retired jersey numbers

If you click this picture larger you can see the 'wavers'

Timeout

2010-06-14T13:48:00.002-04:00

A perfect day is given to me. Cloudy, drizzly, and overcast as only Cape Cod can be. Exactly right outside and so cozy warm inside. My bones are tired after so many days of work. It's a day for pjs, blankets, warm baths, pancakes and old movies. A day to lay low until tomorrow morning, at which point we will start all over again, refueled and ready to go. But that's tomorrow. Today is just today. A lovely, dark quiet day. To pull the covers over our heads and take a timeout.

See you tomorrow.

Just pics

2010-06-11T16:51:00.002-04:00

Chuck

2010-06-08T18:11:00.004-04:00

We have a new friend. His name is Chuck, according to John. Is he a woodchuck? I don't know. He's kinda like us--lots of hair, big teeth and excellent hearing. We enjoy him. Our cat ignores him. He hangs out near our deck and listens intently to what is going on inside. He loves to eat the tops of our dandelions, looking ever so much like he is popping bonbons into his mouth with his tiny fingers. Lucky for him, we have plenty of dandelions. Today, he let me come to the screen door and take his picture.

He turned and gave me his best side. He is very accomodating.

Today Sarah had riding. It was crazy weather. Bright sunny breezes and then heavy thunderstorms all day long. I drove to the stables with trepidation. It's a long highway drive and one of the things I try not to combine is a highway and a rainstorm. I sort of panic. It's not my thing. But, I decided to bite the bullet and hit the road. Afterall, the girl needs to ride! We lucked out and seemed to dodge those dark clouds.

And so she rode. It was beautiful and cool while we were there. She really enjoyed it. We walked through the woods on a trail, I think it was the highlight for her!

And then I drove home, as fast as possible without getting a ticket because this was coming:

Family

2010-06-07T00:51:00.006-04:00

I don't have much to say tonight except that I feel so blessed to have the family that I have. We are a good group. I would be nowhere without them. And I love photographing them.

Here are my brother and my nephew. My brother drives a very cool black camaro and this nephew plays a mean game of baseball.

My sister and my dad. She is a great mom and works with special needs kiddos. Dad is a retired cardio-thoracic surgeon.

Me and John, who is full of random facts about everything.

Nephew Brian in the middle, environmental technologist.

Brian, from the front :)Congratulations to him!!!!

Nephew Gavin, killer saxaphonist.

Dear old dad. Loves chocolate.

Sister Ali and her son Chris.

Brian and his dad, my sister's hubby.

My John.

Stream of consciousness

2010-06-05T17:06:00.003-04:00

Today is 'catch up day' here in my house. Between washing the clothes, dishes, bathrooms, people and the car...well, let's just say everything is clean. My back is better, thanks to John's lifting expertise, and I am seriously looking into a smaller hoyer lift to at least use in the house for my girl.

I am also looking into the acquisition of an Ipad for Sarah, along with the Proloquo2go Application, for communication. I didn't like the Dynavox and am still waiting to trial the Mytobii. Both of these are covered by Sarah's Medicaid insurance. The Ipad is not covered by insurance. Which burns me up. Why would they cover something that runs over $10,000 but not something that runs under $1000? Makes no sense and I don't have the energy to figure it out. I just want Sarah to have SOMETHING that she can use. So, saving the pennies.

Sarah is over 70 pounds now. Yay. She must have some serious reflux going on that the Prilosec is helping. She will stay on it for at least a year and then I will wean her off just a bit and see how she does. I am sure she will need it for the rest of her life. But a trial off of it won't hurt her, just to be sure.

It is humid today....fans or AC? Hard to decide. Right now I have a couple of windows open, fans running and AC on. Covering all the bases.

John is going to be a bank teller this summer. Perfect job for him! He'll be a senior in college next year with a double major in both Sports Management and Finance. He has an awesome GPA and a new girlfriend. I'm very proud.

Jimmy. Where is my Jimmy? Working hard down there in DC. Busy, busy, busy. Hopefully, we will see him up here over the summer. I wait.

My brother Jimmy is visiting this weekend, there is a graduation in the family. So hopefully pictures coming in the next post. Unless it gets rained out. Tough call right now.

And that's the update.

Except for this picture of Mia's(our kitty) food dishes. Simply because I just like the shot:)

So here we are

2010-05-27T12:51:00.004-04:00

I hurt my back lifting Sarah. Owwww. Of course I should have known this was coming. I mean, how many times can you lift almost 70 pounds dead weight and not hurt yourself? On average I lift her 8 times a day. And up until this point it's been fine. Almost 14 years of fine to get here. But now my self is rebelling. Advil and a heating pad are now my companions and it really hurts.
So I will head to work this afternoon and see how that goes. Being that I am a Nurse I don't get much chance to sit, in fact not ever, until the end of my shift, to do paperwork, it is busy, busy, busy. So this ought to be interesting. I definately won't be able to help any of the CNAs lift/move patients, so I feel badly about that.

So, for the short term, thank goodness John is home to do all the lifting. Yay John! But in 2 weeks he starts his fulltime summer job and won't be home much during the day. And then what to do? Well, there is the option of a hoyer lift, but my home is too small to accomodate one, ie hallways and bedroom. I wouldn't be able to move it from one place to another. There are ceiling lifts but I do not own my own home so I cannot install something like that. Although, that would be so awesome! But it's not an option.
And then there's the issue of the car. I am not able to obtain an accessible van so she is a lift in and out of the car. Which I cannot do at the moment so I had to cancel her school tomorrow. Will I have to cancel her riding next week?

And so there it is. Or should I say, here it is.

Ow.

It's a Beautiful Day ♫

2010-05-25T22:02:00.007-04:00

Today was an unexpected gift. I was off of work, it was too hot for Sarah to horseback ride and John had no plans. So what to do? Why, take a road trip! So off we took, to the open road on a glorious day, where it was cooler by the sea, on the very tip of the Cape. And John drove so I could take pictures. Woohoo!

Are we unpacked yet?

2010-05-23T18:31:00.007-04:00

John came through the door a few days ago. He's home for the summer. And, guess what? He's all unpacked! Yup, he's all done! Finished! Everything is where he wants it!

Let me share with you his idea of being 'unpacked'.

Yes sireee, and now he is doing what he was, apparently, born to do...playing video games and putting in plenty of computer time. While eating cereal out of little boxes.

So I opened one of the suitcases because I just have to start. To. Clean. This. Up. (smile)

And I found 3 cute sticky little shot glasses.

Which I promptly had to fill up with sudsy bubbles. At which point John decided he better get involved and go through his 'stuff' before I pawed through it all, and washed it all.

And before we knew it, we were done. All put away for the summer. Woohoo!

And 3 very clean shot glasses are now sitting over my kitchen sink on the window sill. I think I will fill them with M&Ms.

And now an important announcement

2010-05-19T21:07:00.006-04:00

Sarah has reached 70 pounds, folks. Yes, seventy... seven--zero. A full healthy 70 pounds.It has taken months to get here. Five months, in fact. A long stressful slew of time.

For those who aren't up to speed with this issue, here are the facts:

Sarah weighed 71.5 pounds last October. She mysteriously lost weight and ended up at 67.5 pounds in January. She looked too thin. I was a wreck. So began my quest to find the culprit. I added calories. It stopped the downward spiral but I couldn't regain the pounds. I'd get one or two pounds back, only to lose them again. Very frustrating. At one point she went down to 67 pounds.
My goal was just to get her to 70 pounds. If I could get her there I would know we were making progress and I could relax. Well, almost a month ago I decided to put her on Prilosec. I remembered that when she was very young we had tested her for reflux and it came back as mild reflux. No one really paid any attention to it then, but I wondered if it was in any way a contributer to the appetite loss I was seeing now. So, since I had an appointment with her GI doc coming up I decided to do a 'trial' on the med and see what happened. Then I could report the results to him. Well, I saw nothing for 3 weeks. No change. But then something suddenly felt different. She seemed different. She seemed more relaxed. She started eating a bit more at each meal. Just a tiny bit, but it was something.

And now I see it on the scale. Seventy pounds. She may continue to go up and down a bit, but the up is moving up. And I am happy.

Once in a while

2010-05-17T12:42:00.008-04:00

...I find it's a good idea to share the extent of Sarah's challenges and what her day-to-day is like. It is hard to tell from looking at her pictures and I don't tend to focus on what Sarah can't do in my posts. However, I know that when I read a blog about a special little one, I like a quick overview of the child, where that child is at, and a feeling for how the parent is coping.

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.

He's getting ready!

2010-05-14T17:08:00.006-04:00

Words a mom loves to hear from her child while she waits patiently for him to come home from college for the summer:

"I'm starting to pack, mom."

And because he knows I loathe the idea of him bringing home all sorts of useless junk, he added:

"And I threw out a pair of old sneakers. You would be so proud."

Isn't he awesome?

It's Official...

2010-05-12T14:09:00.005-04:00

...The Leo...

...that she is...

...is sporting...

...a Lion's Mane.

My Mom

2010-05-09T01:09:00.003-04:00

Today is Mother's Day and I wish all you moms out there a Very Happy Day!!!

I'm thinking of my mom today, and every day. She was awesome and I miss her very much. She died of cancer almost ten years ago. Ten years. It's hard to believe so much time has gone by and yet it seems like such a long time since I've been able to pick up the phone and call her.

I remember the last time she called me. It was early Christmas morning and she was calling to say 'Merry Christmas Les". We lived in the next town but she loved to make that phone call. I saw her name on the caller ID and just knew that it was the last time I would see that and also the last time I would hear her wish me a Merry Christmas. One of those moments, I guess.

But today is a day to celebrate her. So I will!

She was the second daughter of 3 children. Her name was Nancy Catherine. She was pretty and tall and brunette. She grew up on the northern coast of Massachusetts. She loved lobster, dressing up and makeup. She was classy and talkative. She was insightful and spiritual. She believed everything happened for a reason and things turned out the way they were supposed to. She loved old movies and the Enquirer and Star magazines. She always hoped for the best. Her favorite flowers were purple lilacs. I always tried to snag her some for Mother's day.

Most of all she loved her children. And her grandchildren. She got to know all of them before she died. I am happy about that. She was a very good mom for me. I was always a mama's girl and I never went through that teenage stage of fighting with my mom. She was always helpful and a good problem solver. She was always right! I accepted that and would laugh about it.

My mom was very young for her age. She had a youthful way about her. My boys said their 'Nannie' was 'cool'. She was always up on the latest fashions and trends. She loved working in the retail clothing industry after we had grown up. She was a stay-at-home mom in the early days. She handled my little-girl fears with gentleness and confidence. I was sick very often and she seemed to know just what to do. She always made me feel better.

I remember her spanking me only once :) My parents had company over one evening and my sister and I kept jumping on our beds, making a racket, even after she told us to stop. She warned us but we kept at it. So that was that.

No matter what decisions I made for my life she was never critical. She was always supportive and encouraging. If they turned out badly, she was there to help me. I was never alone. I never heard 'I told you so'.

As I write this, I am wondering if I am remembering only the good things, which often happens after the fact. But, for me, and I can only speak for myself, she was the best. I am not remembering her through rose colored glasses. I know she was human and had her issues, of course, but as MY MOM, she was awesome. And I know she was proud of me, just the way I was. And it gave me strength. It still does. When I am about to face something difficult, my inner mantra is "I am my mother's daughter'. I want to continue to make her proud. She deserves that.

And now, after all that sappiness:) here are some pictures of her.

These two pictures are me and mom.

And mom with the three of us:

She loved the sun!

Mom and my Jimmy:

And the last picture ever taken of her, with my sister and brother and my sister's three children.

♥ Happy Mother's Day Mom ♥ I love you ♥ I miss you ♥