It was Merry

This is my favorite photo of the Christmas holiday. It was taken Christmas eve after our family and friends had gone home. I had just given them their new 'Christmas pajamas'. Every Christmas eve, since they were babies, I have gotten them new PJs to wear. Some traditions never die :) Thank goodness. Aren't they just too cute?

Waiting for one more...

Jimmy. Due in Monday night via Southwest Airlines. Woohoo!

Getting in the spirit

I don't know about the rest of the world, but christmas trees are hard to find this last week before the big day! We drove all over the place to find one tree. We almost had to go the 'fake' route. But John was determined to find one. As for me, a fake one would be fine! But that was NOT going to happen according to my son. And poor Sarah was along for the ride listening to us as we zigzagged all over Cape Cod. Finally, a couple of hours later, we found a place that had 2 trees left and we took one. YAY!!




John is trying to get this monstrocity in the door. It was a tight fit. It is fat.
We finally got it up and discovered that the tree lights did not work. As we were in the middle of a snow storm, I had to wait till the next day to get them.



Here are the after storm pics.




This is me behind the tree and then John trying to hit me with a snowball. He was quite accurate. The snowball up in the air in this picture hit me square on the thigh.



And here is Sarah enjoying the decorated tree (with lights!)

Fa La La La La

Tomorrow is John 'pickup day' at the Amtrak station in Providence, RI.
Monday night at 10:30pm is 'Jimmy pickup night' at the airport. And the family will be complete. We don't have the tree yet, as John wants me to wait for him. I haven't made the traditional Christmas cookies because John wants to help. Oh, and John's birthday is the day after Christmas(he turns 20) so there is the birthday cake to make. Oh, and candles to remember to pick up. I suppose we could decorate it with Christmas lights :)
So, from the moment I pick up John and for the next 2 weeks, it is going to be a mad dash-about. From one thing to the next. And the next. And the next. I may as well be one of Santa's reindeer. Just call me Blitzen. That fits.
Can you just see us celebrating the holiday and birthday among 50 packed boxes, that are waiting to be moved? If I could only get them packed!

Busy, busy, busy

After a long tumultuous few weeks, the news is that we are moving. Right at the holidays. A good, sappy Hallmark movie could be made with the plot of this story but, really, who has the time? We are all pitching in and I am hoping it will go smoothly.
We are staying in the same town. But it is an upheaval, especially for Sarah. Her security is very dependent on her surroundings and I am not able to explain to her what's happening in a way that she can understand. My girl. Between the increased activity of Christmas and now the move, she is going to be overdone. And there is nothing I can do to stop it. It is what it is.
The bright spot is the new house is larger and in a very pretty neighborhood. Lots of little streets to walk her along. I do, really, like the house. It is perfect for us. In the end it will all be fine. It's just that the timing is tough. For me, for her.
So the packing begins. And will continue for a couple of weeks. And then we move. I am praying there is not a blizzard on moving day :)

A sentence for Saturday

"My life is not ordinary and neither are my children."

There is chaos here right now. Not a good kind of chaos but here it is. I don't do well with messy circumstances - It upsets my delicate constitution! I need organization! order! structure! predictability! reason! But many people don't operate that way and I don't live in a vacume. Darn. As always, the kids are great and remain solid and steady, while the winds blow around us, turning everything topsy turvy. All will settle eventually and I am trying to remain optimistic till we land on the other side.

Fun, fun, fun

This is John waiting for the meal




And my brother Jimmy




And this would be Sarah, off in my sister's room, having some quiet time in her pajamas at the end of the day, watching a dvd




In this photo is my Jimmy, his girlfriend Samantha, and my nephew Brian




And here is my sister, Ali, after the meal, making coffee...and my brother in the background cleaning up-what a guy!




Hanging out is my Jimmy, cousin Brian, cousin Gavin and my John




And finally, a pretty picture of the table set before dinner. We had Thanksgiving dinner at my sister's house. She lives a few streets over from me. It was a good time. She has 3 sons, I have 2 sons and then there is my Sarah. The only girl grandchild. A rose among the thorns. It was so good to have everyone together.

Once upon a time my sister and I had 5 little boys. With high voices, skinned knees, sweaty tshirts and messy hair. And now they are almost all grown. With deep voices, loud laughter, and many opinions. One has an earring, two have girlfriends, one plays a mean saxaphone, one is a college dude, four are taller than their mothers and one is sporting an interesting style of facial hair. Quite a cast of characters. And luckily, all great kids/guys. Everyone gets along and looks forward to seeing each other. Right now they range in age from 11-23. And we are thankful to have every single one of them.

Ready...Set...

GO! The front yard is raked. I cut Sarah's hair. I made it to the food store. John's sheets are freshly washed and on his bed. I highlighted my hair. Got the new phone. And Sarah and I are all better with no time to spare! We are good to go. Tomorrow afternoon we head to the train station to pick up John. Jimmy will be rolling in shortly thereafter. Sarah will be beside herself. Very exciting for us girls! Get ready for lots of pictures.

So much to do...

...and pretty much unable to leave the house. We are still sick and slowly on the upswing, but 's-l-o-w-l-y' is the operative word here. We are not better yet. We are both on antibiotics. I can slink out to work and back again but that's about it. Sarah made it out once this week to the pediatrician and that was enough for her. It is very cold and windy on Cape Cod right now.

(I am watching Regis And Kelly at this moment and 'Il Divo' are on, singing opera along with bagpipes. Let me just say, there is nothing like the sound of bagpipes. so beautiful and dramatic. But, I digress...)

Back to the issue at hand. We are stuck inside and there's so much to do before the boys get here and Thanksgiving rolls in. These are the places I need to go: the mall for a new phone, the grocery store for the obvious food stuffs, the local garage for an oil change(way overdue-light blinking!), the front yard and the back yard to rake all the leaves that have fallen in the past 2 months.
Now, I am aware that some of these things could be put off until after the holiday. But the one ingredient that I have not mentioned is that I am very OCD, which basically means that until I can get these things done I am going to obsess over them. Over and over they will run through my brain like a tickertape. I cannot shut it off. I have tried. Not happening.

So here I sit. Doing nothing. Trying to feel good that Sarah is tucked into her warm comfy bed with her pajamas on and the vaporizor running for a morning nap, instead of bundled up and being dragged about town by her crazy mother. I am trying to feel good about this. Really.

Sarah's Angels

Hanging over Sarah's bed is a trio of "Angels". My sons have corrected me by saying they are doves but I see them as angels.
When I was expecting Sarah all those years ago, I was shopping in a little Christmas store and there in a clear bag, tossed in the 'clearance box', was a blue cloud. I picked it up, turned it over and saw the 3 angels attatched to the cloud. I loved it and wanted it to hang over my baby's crib.
So, the day the crib was assembled, the angels were placed overhead. There was no need for a typical baby mobile. And everytime Sarah was placed in the crib either myself or Jimmy or John would spin the angels for her to see. Sarah soon learned to anticipate their movement and would excitedly look up each time she was put in her crib.
When Sarah was moved to a bed, the angels were hung right over it. When we changed homes 2 years ago, the angels had to be found, unpacked and hung that first night as she could not settle until she saw them above her.
The interesting thing is that Sarah is legally blind. She is terribly nearsighted. She has no depth perception. She does not wear any corrective lenses in bed. She cannot see anything in her day to day routine without her glasses or contacts in. And yet, she 'sees' her angels with her plain naked eyes.

Let's get this over with

There's a little over a week left until the boys land. And Sarah and I are sick. The only bright spot I see is that we should be feeling better by the time they get here! Isn't that encouraging news?
For now we are miserable. Fevers, aches, colds, restless nights. And my hair has gone totally crazy from the humidity of the vaporizer. I've been sick about a week. Sarah's illness just started. She is a much better patient than I am. More pleasant and accepting of her plight. I am more of a whiner, a complainer. Of course I am the one doing all the work around here while Miss Sarah gets waited on. There is THAT teensy little detail :)

A good weekend

It was so good to have John home. We had no plans, just hung around and relaxed. He looks great and seemed to have been refreshed by the time spent at home. Sarah was thrilled to see and hear him, and of course, his cat, Mia, was beside herself with excitement :)

There IS hope!

Woohoo! John!

I just got a call from my college boy and he is coming home this weekend!!!! He is catching the train in NYC and heading up the coast on Friday! I will pick him up in Providence, RI at noon. I haven't seen him in over 2 months. He misses us :)
I am so excited. Now I get to go to the store and buy his favorite goodies. I get to spoil him. He wants to see the ocean. I totally get that. A boy after my own heart. He is so much me.

"Coach Jimmy"

I am still surprised

Yes, I know Jimmy is 'all grown up'. I know he is 23. I know he has completed college, has a full-time job and supports himself. I know he is now a Little League baseball coach. I know he has his own bills that he pays every month. I know he lives far away, independently, from me. I know he has his own front door now.

But, no matter what, I see my blonde boy as this:



and this:



and this:



and sometimes even this:




So, tonight is Halloween. And Jimmy is chatting to me online about how he got the wrong size candy bars to hand out(too big) so now he doesn't have enough for all the kids that will come to his house. So he just called his roommate and asked him to pick up more on his way home from work. And suddenly I felt very disoriented. How is it that my firstborn is now handing out candy for Halloween from his own place? Like a responsible adult? When did that happen? How can he be old enough? When did he grow up?

I remember him in all HIS costumes through the years. The first year he was a devil, then a ghost, then a ninja turtle, then a pirate, then dracula, then a hockey player....he was always so enthusiastic! Running from house to house, yelling for 'poor John' to hurry and keep up with him :)









AND... not only is he handing out candy like an adult but he is running a Halloween party in Wash. D.C. A party for 175 people all in costume at a hotel that used to be a funeral home. He is IN CHARGE. Of the whole event.




I CANNOT keep up.

To the point of failure

Sarah has theraputic riding every Tuesday. Each week is a different experience. Sometimes she is enthused, sometimes cranky, sometimes tired before we even get there, sometimes geared up and ready to go. This week she was in a great place. Ready to ride. So off we went.
We decided to have her ride outdoors rather than in the indoor ring as it was such a beautiful day. She was into it. Smiling. Chirping. Laughing. As it was going so well, the instructor suggested we go on one of the short trail rides through the woods. It was a little more bumpy(translate: more work) than Sarah was used to but she loved it. Finally, we emerged from the trail and took one more walk around the track before heading into the stables.....
Well about 30 yards from the dismount area, Sarah's trunk muscles simply gave out. They had nothing left. She started giggling to let me know 'something' was happening and the next thing I knew she was leaning more and more to her right and was heading straight down. I was trying to push her back up from that side and the instructor was trying to pull her up from the other side. What a sight we must have been!
There was no way we or she could get her back up into the saddle. What to do? what to do? She was going down unless we took her off the horse. So while she was leaning and giggling, we released her feet from the stirrups and I had no choice but to drag her down from the horse. Slowly.
And there I was in the middle of a field holding a totally floppy 68 pound child. I started laughing and that was not good! I still had to get her to my car which was quite a ways away. I could have layed her in the grass and waited for someone to bring her wheelchair but it is no easy feat to get her up from the ground! As I already had her in my arms, off we went to try and make it to the car. I was successful and we both were amused.
So today, the 'day after', we are both a bit sore. Sarah, because she exercised to the point of failure and me because I carried her to the point of failure. Tylenol is on our agenda today :)

Ewwwww...

There's a mouse in the house
Or mice in the hice
Mia the cat is thrilled
I am not
Up from the basement
she darts
twice
mouses in the mouth
Ewwww
I scream
So down go the traps
peanut butter
as bait
smart little mice
eat the snacks
yum yum
traps remains intact
no snaps
they are getting fat
on my appetizers
I call son Jimmy
Help!
he offers his trap tips
I will try again
tonight
if no results
new traps will be tried
wish me success
Ewwww

A question from John

"But mom, WHY is Sarah going to be so small? Is it because IF she has cerebral palsy, THAT makes her small? Or is it because 'whatever she has' is making her small?"

Very good question. If Sarah stays the size she is, she will be the size of a typical 10 year old girl for the rest of her life. Does this qualify her as a 'little person'?

I just looked it up and a 'little person' is no taller than 4'10". Interesting. Sarah is 4'8".

But, I digress. The issue is, what contributes to Sarah's petite size? She is a very good eater. Very healthy. No medical issues. I find most people with cerebral palsy to be larger than Sarah in adulthood. Of course, I speak in the dangerous world of generalities here. Shall I just say, I don't think that CP is the answer in Sarah's situation.

I am inclined to say that whatever Sarah 'has' is responsible for her small size. It is part of the 'undiagnosed diagnosis', being one of its many unusual features. I am aware that girls with Rett syndrome tend to be on the small size.

One day soon, I will do a post showing which traits Sarah has that fit the Rett category and those that don't. That would be kind of interesting.

So John, there's your answer. In a round-about way.

Sweet Saturday

12 year old checkup

Sarah had her yearly checkup today. She was so good about it. Even through the flu shot. She is in the 10th percentile for height and 5th for weight. Her BMI is fine. The doc called her a 'petite princess'. He thinks her growth is done. She is 4'8" and 68 pounds. That is probably all she will ever be.
We went through all the typical health issues and she is deemed 'healthy'. Looking fine. Sarah is rarely sick. The only time we run into trouble is when we start fiddling with her muscles and bones and then she goes down like a stack of dominoes.
There is no sign of John's mononucleosis. A couple more weeks and she will be out of the woods for that.
So, all is well. I am glad. I need a break. So does she.

Wordless Wednesday

What SHOULD be crammed into a day

Sarah has a lot of things that I am supposed to do with her every day. Here's the list:

1. Two hours in her stander
2. 1/2 hour academics
3. Two hour-long rest periods with leg brace on
4. 1/2 hour computer time
5. 1/2 hour spine work---therapy ball, tummy time
6. Continually offer choices

There are the things she LIKES to do:

1. Take a stroller ride around the neighborhood
2. Watch her music DVDs in her rocking chair
3. Sit at the kitchen table with her book and listen to music
4. Go to the mall
5. Eat
6. Do errands in the car

This is all in addition to meals and a bath(which takes an hour).

It takes a lot of planning to do the 'should' list while still giving her things on the 'fun' list.

This does not include the days she has theraputic riding, doctor appointments, OT at school or the 2 days a week that I work. Those days it mostly all goes out the window.

I'm just saying.

The Orthopedic Visit

Sarah looks shell-shocked after all her xrays!!

So Sarah had an appointment with her orthopedic surgeon and her physiatrist who works with him. I went in thinking we were going to focus on her tight left hamstring and we ended up discussing her spine. We did hip xrays and spine xrays.
It was quite a feat getting the xrays done correctly.
The doc wanted them weight bearing(standing) but Sarah can only stand on her right leg, and then only for 15 seconds or so.... So....it took five people to hold her properly. One on each foot and knee, then we had people under her arms, another holding her chin up....we had to do this 4 separate times to get all the pictures.
The first time she protested loudly and carried on but after that she gave up and was silent and cooperative. Xray rooms are difficult for her--lots of loud clicking as they move the machines around, doors slamming and them lots of people's hands on her.
And the results? Her hips are still in their sockets. YAY! Her hip surgery was 6 years ago and it is still holding. Whew! I wouldn't want to repeat THAT again.
And the spine...it has a 'C' curve of 20 degrees. Apparently that's considered mild, but she didn't have it 2 years ago. The doc is not concerned at this point about it.

The issue is the kyphosis(slouching forward) that she has. She has had it to a degree all her life but it is more apparent now. The doc says it is flexible-meaning she is not stuck that way, but she is not as flexible as she used to be(in my little opinion). The kyphosis is due to her low trunk tone. There was a long discussion with all the docs and PTs there. They brainstormed among themselves on the best way to handle it. The conclusion is that she is to have more time in her stander, time lying flat on the floor, backwards over a large therapy ball and on her belly up on her elbows.

Sarah will love these new activities! NOT!! Anyway, I will give it our best and hopefully keep things from progressing.

Oh, and about the hamstring...put a dynamic brace on that leg when she is napping. This brace stretches the leg out as straight as possible.

Oh, and see you in 6 months.

Wish us luck!

Fun older pics

This is Jimmy and Sarah, he is 12 and she is 1.


This is the furthest Sarah came along in her motor development. I believe she is 2 here. She could crawl only if i moved her left leg forward for her.


She is a year old here. Could sit if placed but couldn't get there by herself.


She is 2 here. This was her bed. A mattress on the floor with a bed rail.


She was 3 here. She could see much better when I discovered she needed glasses!


This was her gait trainer. She is about 5 or 6 here. She preferred to sit in it rather than move.


And she is 3 here. That's when she got her first haircut. After her hip surgery at age 6 she has never been able to sit like this again.