More reality

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

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

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!

Lifting Sarah

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

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....

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

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

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!

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

Eros

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

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

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

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......