Cyber Monday

Everybody complains about the Monday after a long weekend. It is difficult to get yourself up and back in the swing of things. Not me. I am always happy to start the routine again. Once Maggie gets on the bus and leaves for school the day is mine. It is not that, though. Maggie is happiest when she gets to go to school. Social activities are extremely limited for her and school is a wonderful social outlet for her.

Over the long weekend, she had fun visiting with cousins and was very excited to see her brother Eddie; but it is passive. People come to her, say hello and go about their other social obligations. Maggie is left behind. Part of that are the physical challenges presented by her wheelchair and the equipment and part of it is Maggie’s own stamina. She just cannot do too much without running out of gas. That keeps her on a rather short tether.

I am as guilty as the next person is when it comes to leaving her behind, and I feel terrible. On Thanksgiving, for example, we were hosting Steve’s family and had to cook for 17 people. Once everything was ready, I took the boys and stopped in to say hello to my mom and my siblings who were gathering at my mother’s house. I took the boys, but left Maggie and Steve at home. If we took Maggie we would have to take her down in the elevator, load her into the van, unload her at my mom’s, carry her up the stairs hold her the whole time we were there, carry her back down, strap her into the chair, load her into the van and bring her home. The 45-minute stay would have been 10 minutes and then it is just not worth the effort. Therefore, Maggie stays home.

It is easy to justify this. Maggie would not have any fun, Maggie would be overwhelmed, Maggie would be overtired etc etc. All of that is true, but it still makes a mom feel guilty.

Fortunately, the cousins arrived here before we even got home, so Maggie did not feel too left out. Thanksgiving was fun for her and everyone else. Friday was quiet and we just hung out putting things away from the Thanksgiving fete. She was happy because her brothers were especially attentive. Eddie shaved his head last week and looked like a marine. At first, she was shocked, but soon started laughing and kept rubbing his head whenever he was in reach. That was very entertaining.

Though her social interactions are far more limited than those of most people, there is another fact about Maggie. She is very easily entertained. Sitting with her for a few minutes, reading her a book, or simply including her in the conversation makes her extremely happy. Maybe that is necessity acting as the mother of invention or maybe it is the balance of nature. Maggie cannot do much for entertainment, but it does not take much to entertain her.

Thanksgiving 2009

Hello and happy Thanksgiving eve! I've beeen absent all week with good reason. Either I was away or just too busy to sit down and write.

After my quick (and very moving) trip to Anaheim on Friday I was home for less than 24 hours. I went to VEGAS with my sister Joan from 11:00PM Friday night until Monday morning. I did not win any money, in fact I lost. My lucky sister apparently won the money I lost. Next time I'm just going to write her a check and skip the trip.

I returned just after Maggie came home from school Monday and really got the cold shoulder from her. How DARE I consider taking a break. She's over it now and we're friends again.

When I got Maggie off to school on Tuesday morning I went straight to the super market. Tomorrow I'm having 17 for Thanksgiving dinner and at that point had purchased only the sweet potatoes. I was getting a bit nervous about everythign I had to do. Now that the refrigerator is full to bursting, I feel better.

Today Maggie is off school and I cannot spend any time on the computer or she gets mad. I guess I owe her some undivided attention. (The nurse just arrived, so I snuck away for a quick post).

I will be back after this Thanksgiving hubbub dies down. In the meantime I wish everyone the best Thanksgiving. I hope you are surrounded by family and/or friends and have a feast.

Thankful: I'm behind on these. I'm thankful for the following:

• a beautiful clear day in late November,
• getting a break,
• my sister Joan's joie de vivre
• my understanding husband who picked up the slack
• all of you who read about my life

I'm also thankful that

• Maggie missed me but still forgave me for leaving
• Eddie will be home later today
• Tim is here
• we will all be together with Steve's entire family
• I can pop in at my mom's house and say hello to (most of) my extended family
• and that the best Turkeys' in the world are sold at a store two blocks from here. I just walked over there with my old lady shopping cart and strolled home with a 23lb bird.

Early Bird

Good news: car repair bill was not too bad.

Bad news: the noise is still there.

Oh well, at least I know it is safe. It's the lift assembly. I have to go to another other place to address that. I can live with the noise as long as I know the car isn't slowly cracking in half.

I't's 5:24AM and I am leaving in 10 minutes for the airport. I have to fly down to Orange County for a funeral today. A very kind man is being laid to rest after a very long and successful life. It is an honor to be able to pay my respects to him as well as to his wife and daughters.

This is a quick trip. I will be back at 9:00 P.M. and I'm sure I will be tired.

Thankful: Today I'm thankful that I knew Leonard White.

Cold with a chance of damage

It's a cold morning. Deceptively so because it is beautiful and clear. In fact I highly recommend sleeves. That recommendation comes from experience. I dropped the van off at 7:30 AM to determine the source of the troubling noise. The gas station is about a mile from here and Brisco and I walked home together. I am wearing a fleece vest and a long sleeved t-shirt. My arms are freezing.

The noise in the van is directly related to the loud clunk I heard as I hit a manhole cover last week. Maggie was with me in the car and we were driving through an area that was getting re-paved. There was no pavement and the lanes were set by cones. I went very slowly because it was tricky. Good thing. I didn't realize that without pavement the manhole cover was sticking up several inches. My van is lowered to accommodate the wheelchair lift.

All of a sudden - wham! there was a huge noise right beneath Maggie's wheelchair. She thought that was HILARIOUS. She was laughing so hard she was straining her body. I thought she was going to break through the harness on her wheelchair.

I didn't hear any problem initially, so we just kept on truckin. Over the next several days I noticed a noise emanating from the rear right tire when I started and stopped. Hopefully it's as simple as a shock absorber, but that takes the kind of luck that generally eludes me. I probably messed up the suspension. I have visions of the car getting worse and worse until the wheel just falls off while on the freeway. Hence it was time to get it checked out. I will know soon enough.

In the meantime I walk. Keep a good thought that whatever this problem is it's not too expensive.

Today I'm thankful for long sleeves on a cold day and for pavement. Ok, I'm a city girl, so I'm always thankful for pavement, but today more so because of the dangers it hides.

In case I freaked anyone out, I want you to know I am home safe from my trip to Sacramento.

Gratitude: today I'm thankful that I don't have to wake up in the middle of EVERY night and also thankful that I do not have to drive that far very often.

Wild Eyed Driving

Not a lot of sleep last night.

I went to bed at the normal time, around 11:00PM. Tim went out just as I was going to bed. His plan was to help his cousin with an experiment for class. They needed six males and were just a block away. He said he'd be home at 12:30. I left the hall light on and went to bed. At 2:30 I woke up and the light was still on. I know he's 19, but it still makes me nervous.

I texted him. He returned the text, they decided to go to Ocean Beach to watch the meteor shower. In all my escapades when I was young I never once used the meteor shower line. But it was actually true, I heard it on the news yesterday. Copernicus returned home shortly thereafter.

I went back to sleep only to have the phone ring at 4:30. It was the nurse from downstairs. Maggie pulled out her trach. I was downstairs in a flash. The nurse was holding the old one in place. It was amazing she could reach the phone from there. I went right to work and put in a new one and tied it. I went back to bed again, but sleep was elusive.

All I could think about was needing to stay awake to drive to Sacramento and back today. That's 200 miles driving alone. On very little sleep. And, unlike my scientific son, I am NOT 19.
That's why caffeine is my friend and constant companion. I will just wire up and hit the road.

I have to be back here before Maggie gets home from school. The guy is coming at 3:00 to repair or replace one of the the suction machines. Generally it's good news when something "doesn't suck."

Feliz Cumpleanos

There was a party on Friday afternoon in Maggie’s classroom and I was invited. It was Juan’s 18th birthday. Juan is Maggie’s “boyfriend.” He has significant disabilities himself, but he uses what he has to his advantage. He is the only one in the class who can walk, so he is able to position himself next to Maggie all the time.

Juan is unable to speak and uses a dynavox as well. He does not need the buttons like Maggie does, but just uses the communication device directly. When Maggie wants to talk, she hits one switch to move the “cursor” to the thing she wants to say and, once there, uses the other switch to actually say it. When Maggie gets going, she can fly through the screens and selections to say exactly what she wants. When she is not in the mood, she just sits there smiling as if to say, “You know what I want, just do it.” Juan will have none of that. He takes her hand and hits the button with it as if to say, “C’mon, get with it.” Maggie responds to him.

Maggie did not need any prompting on Friday, though. I programmed her talker so that she could say "Happy Birthday Juan" in spanish, which is the language Juan's family speaks at home. It's simply Feliz Cumpleanos. However, that took a while becaue the dynavox doesn't recognize spanish words and I had to spell them phonetically. I believe I entered it "Felleez coompleeaanyos." He loved the message and so did his mom. (Maggie's making points with the mother.)

There are six kids in Maggie’s class and I assumed the party would be those students, the adults in the class and a couple of parents. I arranged my day to get to Juan’s party at 1:00PM, just as it was beginning. Or so I thought. When I arrived at 1:05, there were at least 25 people in the room. Juan made invitations on the computer in the classroom the day before and went all over the school distributing them. Even the principal stopped by. It was a happy group of people.

Juan was decked out in a suit and tie, and he looked marvelous. He greeted each person, including me, with a big hug. When the noise became too much for him he put on his headphones for a few minutes until he was ready to deal with it again. He is a man who knows how to handle himself.

I did get one picture of Maggie and Juan with my phone. However, I missed the best part. I received an important call and stepped out of the room for a minute. While I was gone, Juan was dancing with Maggie, holding her hand and twirling her around in the wheelchair. The teacher and nurse were looking for me, but I was in the hallway. Of course, it happens the minute I step out.


Then again, maybe it is no coincidence. Juan saw the old lady was gone and made his move.


Gratitude: I am thankful Maggie has such wonderful people around her. In all honestly, I am also thankful Maggie is not 18 yet.