My parents never LISTEN!

Many teenagers share this lament. My parents don't understand me! My parents never listen! For most these are catch phrases for growing up and becoming independent. In Maggie's case she means it quite literally.

We all feel guilty but we have enjoyed several weeks of unbelievably nice weather. The guilt comes because we know that we need rain and snow in the mountains to avoid a drought. Still, it's hard to complain about glorious blue skies in January. Tonight, finally, it's supposed to rain.

 Up until this week it was cold in the mornings but warmed up very nicely during the day. It would get up into the 60's and even hit 70 degrees one day last week, That changed on Sunday. We woke up to overcast skies and much colder temps. The 49ers played Saturday afternoon in 60 degree weather. Sunday was in the 40's. Quite a change. Still, we didn't realize how different it was until we were well into our walk and it wasn't getting any warmer.

It's one thing for Steve and I to deal with the cold. We can run around and stick our hands in our pockets etc. Maggie, however, is a sitting duck and can't do anything to make herself warmer.  We always seem to forget that until  it's too late. She was a trooper for a while. She pulled  the string on her sweatshirt as Steve ran through the park with her.

It was a little more sheltered in the area we call "the land that time forgot" and she had a good laugh with dad. 

 But as we continued on she had clearly had enough. She first used her talker to say, "Mom is cold."  I said, yes I am,, Maggie, but we are moving. She erased that because it was not conveying the message she wanted. We walked on. Then she said "Maggie is cold." We congratulated her on a good sentence and walked on some more. Finally when we were at least a mile from home, she just said this

If you can't see it it says "Dad, I am cold, go to home dad dad dad."

We finally got it through our thick skulls that she was uncomfortable and went home. She did not change that message on her dynavox until we were inside. Then she said it three or four more times just to scold us.

We deserved the scolding. Next time more layers and a shorter outing. And maybe we bring some listening skills.

Born This Way

Quick check in from a very busy week. It's very cold here and they are talking snow in San Francisco for the first time in 30 years or something. Right now it's clear and cold but we will see what the night brings.
Maggie will stay inside in this weather. Her coughing sounds like a foghorn already, I don't think the cold temps will improve that sound at all.

Fortunately, we finished the Maggie Mix 2011, so she can listen to her new songs. This is year three of the Maggie Mix - a collection of pop tunes and other random hits. It's very popular with Maggie's crowd and we prepare one to give out at her birthday party. That's next Thursday! Of course it's just called the Maggie Mix, but each year the Mix has a title too.  We pick a title from the songs on the list, trying to make it work for Maggie. The first Maggie Mix in 2009 featured (among others) the Jonas Brothers and we used their song "That's Just The Way We Roll" as the name. That was too perfect for words since the first recipients were all in Wheelchairs. In 2010 it was Katy Perry's "California Gurls" which was has a good generic application to Maggie.  This year it's more specifically applicable.

As you all know, Maggie goes wild whenever she hears Lady Gaga, so it's only right she should get the recognition.  Lady Gaga, who is always a featured artist on the Maggie Mix was nice enough to name her hit song: "Born this Way." Obviously, that's the title for 2011. It's perfect for Maggie*.

"I'm on the right track, baby, I was born this way."

I think Lady Gaga would be wowed by Maggie too, don't you?

 

(And yes, I am aware that the lyrics may not be referring to physical disabilities, but it's certainly applicable)

You are not going out like that, young lady

Brrr. It is a cold one here today. I know 38 is not cold for most of you, but for San Francisco that is cold. We just are not set up for it here. For example, the elevator we have for Maggie is outside open to the elements. We would not do that if we lived in an unfriendly climate. This morning I had to skate across the ice on the deck in order to get to the elevator. I wondered how the motor would work in the cold, but that was no problem.

The cold weather also presents some challenges for Maggie’s attire. Maggie is a snappy dresser but keeping her warm is not easy. Because of the trach, she cannot wear a turtleneck, or cover her neck in anyway, but we still need to keep her warm. She does have a cotton scarf (kerchief type) over the trach but it doesn’t really work for warmth. The only thing to do is dress her in layers. Her neck is cold, but she is not outside long.

Recently she received a jacket from her cousin Nina. It has a nice furry hood. That helps but even hoods are short lived. As soon as Maggie turns her head, she is staring at the lining of the jacket. The hood generally does not turn with her because it is held in place by the straps of the chair and the design of the headrest. Hats end up on the ground because Maggie loves to throw them. Gloves? Forget about that. With her cerebral palsy, it is difficult to get them on her fingers because she cannot move her body the way we can. Besides, her CP is just one part of the equation. She finds it hilarious to sit patiently while I work and work to get gloves or mittens on her and then immediately yank them off and throw them.

This morning I came downstairs and the night nurse had her all ready to go. She was in the jacket, all zipped up, and the nurse told me she put two shirts on Maggie. Ok, that is as good a job as we can do for her. I focused solely on warmth of her head and never considered anything else.

I took her down to the bus and the nurse went home. As I tied the scarf around her neck, I unzipped her jacket a bit. Yikes! She did have two shirts on as the nurse said. However, they were two shirts that should not have even been in the drawer at the same time, let alone on Maggie’s body at the same time. The black and gray sophisticated striped sweater/shirt combo was underneath a blue and turquoise summery shirt. She looked ridiculous. There was no time to change because the bus was coming.

The school nurse was there and I said, "I want you to know I did not dress her and please just take off the blue shirt when you get to school." However, there was more. As Maggie rode the lift up to the bus, I noticed her pants were light black cotton pants that hit her about mid-calf. Her bare legs had a nice blue tinge. I looked at the school nurse again and said. "I REALLY did not dress her this morning."

Poor Maggie is off to her inner city high school with freezing cold legs and clashing shirts. The night nurse is of a different culture and perhaps in that culture, this outfit is ok, but not in mine. I felt like a bad mother.

I can fix this. Tonight I think I will lay out the clothes I want Maggie to wear in the morning and I will get up a bit earlier in the morning to do inspection. Of course Maggie will probably start a new trend and I will embarrass her by putting her in matching clothes that actually keep her warm.