Fitting it all in

From the outside looking in, life is quiet. I go to work and  I take care of Sarah. I look forward to visits from the boys. I feed the cat. I mow the lawn.

From the inside looking out, I just don't have enough time for everything I want to do. I want to work on my family's genealogy. I want to practice the piano(keyboard). These things take time. I am chipping away at them when I have free time. I guess that's the issue. I have very little free time. Keeping this boat afloat takes pretty much everything I have. But now , interestingly, my brain is reaching out. Searching for things IT wants to do, regardless of how busy I am. Ha!

So that's what's going on. I'm going to throw some pictures on here, cause photography is another thing my brain wants to spend time on.

This picture above is the 'after' picture of Sarah's haircut, done at the kitchen table. She certainly has the loop-de-loop curl thing going on.

This last picture is my favorite. Not sure why.

Yes siree, this is my girlie :) I can't believe she will turn 16 in August. She had her first psychic reading this month. It was very interesting. Her favorite color is yellow. Who knew? :)

Reunited

Recently my sister and I had a reunion with our babysitters. Yup, you read that right. With our 3 babysitters from Virginia 40 years ago, that we hadn't seen or even spoken with, in all this time. Forty years!!!  This is what I enjoy about Facebook. Going way back and connecting again. Or not. But we all wanted to. So, they were in New England for a wedding shower for one of their daughters, so we made plans to meet for lunch. Three sisters: Nancy, Virgie, Dottie and also their brother (Buddy)'s wife.

And meet we did. Two hours was not long enough. So much time, so many changes, and yet, they are just the same as I remember. It was so good to see them. It's hard to explain, but spending that time with them brought me back to my true self. The one that I was as a child,  before the stresses and demands and expectations of adulthood come along. Before life experiences and responsibilities color us and mold us. I feel stronger in who I am now, when I am able to revisit the child I was then. Ironic, eh?

And so, the memories! My sister and I were flower girls in Nancy's wedding. Their mother and I had the same birthday. Every year we walked over to their house to watch Rudolph at Christmas time on TV. I remember that they drove a Volkswagon Bug. My sister Ali and I would cram ourselves into the tiny back seat. One time their younger brother, Buddy,  babysat us and we were throwing couch pillows and he got pizza all over the pillows. LOL. On my 10th birthday their mother gave me a book titled 'White Gloves and Party Manners'. I actually might still have it. She also made me a pilgrim costume for something that I had to do in 6th grade. It was purple with a white cap, collar and apron. She mixed meatloaf with her hands. They had a huge black dog, I am thinking a lab/great dane mix? He was named Lincoln, after the guy on the Mod Squad. So many little memories.....every single one being  warm, cozy and good. I remember wanting my mother to look like their mother because, to me, she looked like how a mother 'should' look: greying hair, a little round, shorter. My mother, on the other hand  was tall, slim, brunette and glamorous. Ha!

And that baby I mentioned in this post? The one that I pushed in his carriage and thought I was in heaven? He was Nancy's son, Adam. I loved that baby. He's all grown up now, married with a child of his own.

I am thankful that they were able to make the jaunt to our neck of the woods amidst their own exciting wedding shower plans. We hope to see them again someday.

Back row: Sister Ali, Buddy's wife, Virgie and Dottie. Seated: Nancy and myself. I will treasure this photo.

Sunday Randomness

Hello

Today I cut the lawn. I strongly dislike cutting the lawn, but I love when it is done. Actually, do you know what I dislike even more? Weed whacking. I rarely do it. It never goes well. Something always breaks on that thing. 

Sarah is still recuperating from her trip into Children's this week. I have kept her home every day since and she's just starting to get back to her old self.

I painted her fingernails and toe nails. She liked it, which was funny because she resists anyone touching her hands, she always pulls them away. But not for the nail polish. That, apparently, was just fine.

I don't like to cook. It's too much work and too much to clean up. So, I didn't cook this weekend! I still did a lot of cleaning though. 

I am having trouble figuring out how to work Proloquo2go. It is a communication program on Sarah's IPad. I need to get it going, but have hit a roadblock, or a brain block. I want all the text to be in uppercase, but it isn't happening. Sarah reads uppercase only. Hence, the problem.

Big news!... Sarah has a friend. A little girl who is as captivated by Sarah as Sarah is by her. It goes both ways, which is awesome. She is a relative of one of Sarah's carers. I will call her T. This is the first time Sarah has shown excitement over the presence of another child and there is obvious disappointment if  T is not here. She really likes her. T is very gentle and loves to read Sarah books and do the IPad with her. T talks about Sarah all the time at home and looks forward to her next visit. We are going to set up 'playdates' for them, so they both can look forward to seeing each other. 

I miss the boys the most on Sundays, when the Red Sox are playing on TV and neither of them are here to watch it with me. Boo. Hoo. So I have switched to TCM. I do love the old black and white movies. Love them.

Well, time to get Sarah up from her nap and get dinner ready. She had a good sleep so she will probably be up till 9pm. Ahhh...the life of a teenager.

Getting Down To It

Today Sarah had her yearly appointment with her orthopedic surgeon and also her physiatrist, who does her botox. It's a long ride in, about 1and 3/4 hours. This is long for Sarah, since she cannot shift her weight in the car. But she was game for a road trip. I had planned out her morning, so that when we left the house at 2 pm she had had a bath, a nap and lunch before we hit the road. This was quite a feat since she doesn't wake up for the day until 11 am!

Anyway, off we went. She was freshly scrubbed, wide awake and with a full tummy. 

I don't care for the city. I feel like the Grinch as I think " The noise, noise noise!!!!" And I want to cover my ears. And don't even mention the traffic. Kudos to those who struggle with that twice a day. I cannot imagine...

So we made it in and headed to the xray department, which is where the horror resides for Sarah. Two years ago she was very upset by the process of getting xrays. This is because, according to Sarah :

(yes, you are getting a list)

1. It is cold in there.

2. The clothes must come off

3. The table is very hard.

4. There is a lot of loud clicking as films are put in place

5. Any talking at all leads to loud echoes

6. The way oversized johnnie keeps falling off

7. The xray techs are strangers

8. These strangers are forcing her skeleton into uncomfortable angles

Now, this year, add to the list the fact that we are 15 years old and we have a teenage attitude, we have opinions, we don't miss a trick.

You probably get the idea. Suffice it to say, there was a LOT of noise coming from my girl. And I am sure it made it all the way out to the waiting room where other children could hear her distress. Sarah can be very loud when she has a point to make, you know. Those poor kids. Listening to Sarah must have scared them to no end :(

After the 5th xray was taken of hips and spine, I ended the session by saying "That's enough. If Dr. S needs more information, he's going to have to feel it with his hands". And we were done. Sarah was fried. Fortunately, these xrays are done only once every 2 years. Yay for that!

So we met with the Docs and I held my breath waiting to hear if the spine had further curving and if the hips are in place. And we had good news. The spine still only has a 13 degree curve and the hips are right where they need to be. 

Woohoo.

We ate dinner at the hospital and wouldn't you know, right in the middle of it, the restaurant burned something and suddenly the fire alarm started sounding and over the paging system a CODE RED was announced numerous times. OMG. Poor Sarah. The noise, the noise, the noise!! Seriously, I couldn't believe it. I also was surprised at how long it took the fire department to show up at Children's Hospital, as it wasn't a drill.

So we made it through that mess and finally got ourselves into the car and rolled into our driveway around 8:30. Sarah was in bed by nine but had a hard time settling, which was very understandable. She thought about crying a few times as I tucked her in, which is hard for me to see, but I know sometimes it's the only way she has to let it all out so she can relax. However, she decided she didn't need to cry, I sang to her for a  little while(don't laugh, she likes it, haha) and she quieted down. I shut the door and a few minutes later I heard her singing before she fell asleep.

I know you don't need all these little details, but part of the purpose of this blog is for my memories.

And now a couple of pics. This is Sarah as we headed out for the day.

 

And this is Sarah at the end of the day.

Totally done.

And so on we go. Tomorrow will be better, my girl. I love you so.

Why

Why is it so easy for me to raise a "severely disabled" child? I mean, why am I not stressed at all by the fact that my only girl requires so much care? Why am I not driven to get to the bottom of her diagnosis? Why does her 'condition' never depress me? Why am I so happy to have her home with me and to be responsible for her schooling? Why am I never sad or overwhelmed with her needs?

Why does it just not bother me?

What is wrong with me? What is going on? Seriously. I am asking.

If Sarah is sick, of course, I am concerned to the point of unrelenting nausea and ridiculous obsession, but I was that way with the boys too, so that's not disability related. That's just me and my neuroses.

So, I have some theories, I don't know if any of them hold the key to my contentment. But here they are:

1. I have always loved dolls. My mom gave me my last babydoll when I was 13. I remember the day. And I remember her telling me it was the last one.

2. I love babies. Simple as that. My most favorite thing in the whole world is a newborn. I cried in 2nd grade when I spelled the word baby wrong on a test. No kidding. I started babysitting at age 10. I pushed a baby in his carriage up and down the street. I was in heaven and felt that I was the luckiest girl in the world. Just exactly like how I feel now caring for Sarah. No difference.

3. Sarah has good doctors, which means, they listen to me and let me run the show. Ha! So absolutely no stress there.

4. Online support groups. Any question that I put out there receives many informed, intelligent, caring  answers from the best source of all- other parents. It's invaluable! They are invaluable.

5. A school system that is comfortable enough to go outside the box for Sarah and give her an educational program that 'no other child in the District has' and is the precise one that I want for her.  Hooray for that.

6. I am not a fighter. I don't have it in me.

7. I am a homebody. I like to be home. And so does Sarah.

8. I have a family that fully accepts and enjoys Sarah just as she is. She's not the only unusual member of the bunch :)

10. My personal outlook, meaning, this is how I happen to see life, in a nutshell :  It is what it is supposed to be. Life is not random. We are here to learn, challenges are here to teach. I tend to look on the bright side. I savor the little things and focus on the big picture, the one beyond this particular life. I don't want to get all spiritual on you so I'll stop here, lol.

11. I believe a successful life is not measured by what you can or cannot physically do. It's what you give that counts and there are many ways to do this.

12. Sarah has brought a dimension to her brothers that otherwise would not exist. So thankful for that.

13. Sarah is a medically stable child. Meaning she is not 'ill'. She doesn't have seizures or heart troubles or respiratory issues that require hospitalizations. Sure, she can't do anything for herself, but she is 'healthy', so far.



So maybe, throwing all these thing together in a pot explains my passivity about the whole thing. Well, maybe passivity is the wrong word .Because I am not passive. I am actively happy. So there, take that, you disability, you!

Yes, I know I am strange.