Chistmas all year long!

I dismantled Christmas. It took a few days and some negotiation, but it's 99% done now. The negotiation stem from my husband's insistence that things should stay up until January 6th, the Feast of the Magi. As you know, I vote for taking it down December 26th at 12:01AM but, to avoid being called Grinch or Scrooge,  I don't really start barking until New Years.

We had a dinner guest on the 3rd so I agreed to leave the tree up if we could take down all the other paraphernalia/decorations.  Now the tree is gone too. The platform the tree was on is still in the living room, but that's going today. The Nativity scene can stay up until tomorrow so the Three Kings know we were expecting them. (I'm hoping for myrrh, but frankincense is always nice too.)

Even though the decorations are gone, the gifts just keep on coming! Yesterday we received a wonderful package of things from Vanya, one of our German exchange students. It is easier to imagine her at home with the book of pictures from her region of Germany. It looks incredibly beautiful. That was fun and Maggie loved her new scarf, which is a bit more stylish than her usual kerchief.

Later in the evening, we received another set of gifts from Emily, Maggie's former teacher who is visiting from Poland. Maggie looks cool in her new shirt for the Euro Cup (which will take place in Warsaw this summer) and I have a lovely porcelain bell.

Steve's present was the best, however. Everyone is familiar with the Russian Nesting dolls - those lovely wooden dolls that have smaller and smaller ones inside. Little did we know, however, that the Russians were such 49er fans. It cracks me up that these dolls were inspired by the San Francisco 49ers, made in Russia, purchased in Poland and traveled back overseas to San Francisco.

These will be displayed through the Superbowl. No negotiation needed. We just have to hope the real 49ers  are still in the hunt.

'scuse me. I have a platform to move.

Sweet Sydney

Maggie received a gift in the mail yesterday. That's a fun thing for a random Wednesday. Of course Ms. Maggie tends to receive gifts fairly often. This is her third gift in a week. Her aunt and uncle sent a t-shirt from Notre Dame University. She loves it. Over the weekend her brother Eddie gave her a cool Felt Bicycle shirt, so Maggie looks very cutting edge. All three gifts were great, but the one on Wednesday was very touching.

She received a book from her cousin Sydney.

Sydney is actually the daughter of Maggie's cousin Kelly. Kelly is the first of the 20 grandchildren and Maggie is among the last.  The age spread is just about an entire generation. Sydney, the first of the NEXT generation  will be 11 next month so she is much closer to Maggie's age. Sydney and her family live in Montana and we've really only met the kids, including Sydney, a couple of times. When they come to California they naturally go visit their grandparents in LA not crazy great aunts and cousins in San Francisco. I did write about a visit they made her a couple of years ago. That was a great time. (Maggie World: Big Sky Invasion)

Sydney sent Maggie a book entitled Out of My Mind by Sharon Draper. This book is a novel for kids about a girl very much like Maggie. We plan to read it to her while she recovers from her surgery tomorrow.  The book itself is great, but the sentiment is even better.

Sydney wrote this inside the cover:

Dear Maggie, When I read this book I thought of you! The main character is Melody. She is sweet, kind, loving and SMART, just like you. Love Sydney.  

Then she decorated the page with a Glittery version of "MAGGIE" (hard to see because it's neon green)

Maggie grinned from ear to ear when she saw it and ran her fingers across the glittery letters.

 I almost started to cry. It was so heartwarming to receive this and to know it came from Syd's heart, which is obviously quite large. Maggie is very lucky to have cousins like Sydney and her sisters who don't let little things like time and distance interfere with thoughtfulness and family.

I wish I could think of a clever book to send back but I am unaware of a book with a heroine so sweet and generous and thoughtful. If Sydney is indicative of the next generation I think we can all relax a little bit about the future.

All the Shuffle Ladies

Maggie is enjoying one all of her Christmas gifts. The cozy blanket from Fely, the beautiful clothes, etc. One gift, however, has her completely entranced.  Santa brought Maggie her very own Ipod shuffle. That means Maggie can listen to her own music in her own room at her own pleasure and not bogart her mom’s Ipod and hog all of the music. Of course Maggie cannot really handle earphones, so she also received a player for the Ipod.  Santa is a bit of an old fogey, however, and he did not realize that a shuffle doesn’t’ really work that well with a player. It works, but it is far from optimal.  We have some kinks to work out.

The most obvious problem is the shuffle mode itself.  Maggie needs to hear certain songs and this shuffle business means there may be other less important songs before Beyonce’s “All the Single Ladies” or Lady Gaga’s “Poker Face.” These other songs are merely noise and need to be dealt with summarily.  If she doesn’t like the song, or if she simply prefers something else, she slams her hand down on her tray as if to shout NO  - TAKE THIS AWAY. We are doing a lot of skipping, and there is no way to tell where her favorite songs are on the playlist. I need to set the playlist into a specific order and then set the shuffle accordingly. On the other hand, she is overjoyed and astonished when she likes a song and then ANOTHER great song comes on in random order.

Another problem is the player. Santa did not realize he bought a battery operated player. By the end of the first afternoon the batteries needed changing. Fortunately, we are using rechargeable batteries, but I think a player upgrade may be in the works. On the other hand, because there is no cord, we can put the thing anywhere, including her bed. Maggie finds this a wonderful feature. She will be able to scroll through the list herself in no time.  In these pictures you can see her gauging how far the player is from her and then reaching for it.

  I am positive we can rig this up to her dynavox, I just have to figure out how to make it work with her switches. It looks like the interface is the same. In fact, her dynavox has an MP3 player built in. However, if Maggie’s music is part of her talker, that will be ALL she will do. Schoolwork and general conversation will be eliminated as she listens to Beyonce nonstop. When Tim was setting up Maggie’s Ipod on my existing Itunes account, he noticed that All the Single Ladies had been played 394 times. Most of my favorite songs had about 15 plays.  That is easily explained. Maggie has been using my Ipod for months now. I was surprised the number was only 394. I asked Tim if that number was per month and he laughed, but I wasn’t kidding; that song plays constantly in this house.  I sit here at work and she asks me to play her music, and I always comply. I type in rhythm with various pop songs.

Once we figure out how to get Maggie to access the IPOD on her own, she will be just like other teenagers. She can sit in her room, listen to her music and ignore us. Except that she’s never alone and needs to be suctioned every few minutes.  

Other than that, though it will be just the same 

Out With The Old ... as soon as I get the energy.

There is nothing quite like the post holiday quiet. All the festivities are over and everything is a mess and that's OK. Now we have to get ready for New Year's, not that we do much partying or anything. But I fully embrace the concept of "Out with the old and in with the new." I have retained the services of Tim and his truck and he will be assisting me in spending the next few days going to The Salvation Army, the dump and anywhere else that might want some of our excess.

We are extremely crowded without the Christmas decorations up and the few weeks they are out make maneuvering impossible. It's funny how fast the Christmas decorations look cluttered. My husband and I disagree on this point. If I had my way I would have taken the tree down yesterday. He prefers it stay up until the Epiphany on January 6. We compromise and take it down New Years.

 I have already packed up extraneous decorations in an effort to reclaim some space in this overcrowded house. I also managed to get rid of some decorations that we just don't use. Every year there are dozens of ornaments that do not fit on the tree and we will not longer be storing those.

I am on a tear to get rid of things. For example, Maggie received a lot of lovely new clothes for Christmas. Yesterday I cleaned out her dresser and filled up a laundry basket with old clothes that either don't fit her or that she just doesn't wear. I need to do that to every closet and drawer in the house, but that will take years.

The problem is, the exhaustion from the holiday preparation and festivities, coupled with staying up all night to care for Maggie on Christmas Eve make it difficult to sustain my desired level of decluttering frenzy. If only I got the flame thrower I asked for. Decluttering would so much easier.

As an aside, I have to tell you about my best gift.  I was surprised when my sister Kate handed me a package because my siblings and I have not exchanged gifts for years. Kate and her family were looking at me expectantly. I reached into the bag and pulled out this sweatshirt.

You realize, of course, that I AM Aunt Sally. And for those of you who don't know, "Please Excuse my dear Aunt Sally is known as "PEMDAS", a mnemonic for remembering the order of operations in solving a mathematical equation, (parenthesis, exponent, multiplication, division, addition, subtraction.) As you can imagine, this was a huge hit with the nieces and nephews. I told them I plan to wear it to every graduation, wedding or any other special moment in any of their lives and stand on a chair waving at them in front of everyone.

Watching the detective

Receiving the award for least observant family of 2009 - the McDonalds of San Francisco.

I told my neighbor about the Sees candy find in the stocking and she started laughing. She and her husband put it there on CHRISTMAS EVE. That's 6 days ago. I first noticed it this morning. They have been hugely entertained watching us come and go through the front door dozens of times since they put it there. Never noticed it. Not me, not my husband, not the kids, not my mother, brother sister in law, niece, Tim's friends, Eddie's friends, four different nurses or a couple of delivery guys.

Best hiding place is always in plain sight. Especially with the ever vigilant McDonalds on the case.

Watch this!

Buying gifts for Maggie is both incredibly difficult and perfectly simple. It is difficult because there are so many things she cannot do and I am reminded of that whenever Christmas or her birthday looms. It used to depress me but it doesn’t so much anymore. It is just part of the whole deal.

On the other hand buying gifts for Maggie is simple because Maggie loves EVERYTHING. Opening gifts is hugely entertaining, from ripping the paper and reaching in the box to pulling out whatever it is. And laughing uproariously

Her favorite gift this year did not come from me. Her nurse Etoy bought her a watch. That is a curious present for a girl who cannot tell time, cannot see the watch and cannot speak.

Maggie LOVES it.

It opens like a bracelet and slides right over her very slim wrists. If you ask her what time it is she just lifts up her arm and laughs.

Tim was cracking up at her antics with the watch the other day and was delaying leaving for work. He only has a week or so left there and it is not cool to be late. The irony of wasting time while playing with a watch was not lost on me.

I taught Maggie how to tap her watch impatiently to show someone he or she is late. She thinks that is a riot. The tapping is clumsy because of Maggie’s cerebral palsy, but it is purposeful. It is pretty clear what she is doing.

The only problem is that Maggie cannot get the requisite disapproving look on her
face to go with the tap tap tap. It is hard to look disapproving when you are filled with joy.