Happy New Year!!!!!

2010 winds to a close. A tough year for us in many ways, particularly losing Steve's mom.

But there were good things too, especially Eddie graduating and immediately getting his dream job. He is driving to Orange County to start his new life as I type this.

The Giants winning the World series was incredible fun!

Maggie ends 2010 in good health, which is wonderful. We hope that good health continues in 2011 and lasts more than a week or so at a time.

Happy New Year everybody!

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.

I think December 26th might be my favorite day of all.

Merry Christmas

Merry Christmas friends. And to those of you who don't celebrate, Happy Saturday.

It's 3:44AM Christmas morning and I am on the night shift. Maggie needs round the clock care and we don't have a nurse tonight. I was originally delighted when the nurse agreed to work tonight. I promised to pay her well. Of course Christmas Eve morning she changed her mind and canceled. I was bummed, but figured, it was  gift even THINKING I would get to sleep on Christmas. I didn't dread this all week which would have fouled my mood, so it worked out.

And Steve took the first part of the night. I went to bed at 10:30 PM and slept until 2:00AM. Then he went to bed. I dealt with Maggie's meds and other needs for about an hour straight, and she finally fell back to sleep.Now I can putter around and listen for when she needs to be suctioned etc.  I'm cleaning up from Christmas Eve dinner and getting things started for the dishes I'm taking to my mom's house later today. If I can do that in the middle of the night, I can sneak in another couple of hours sleep after the gifting frenzy.

So I am off to roast some butternut squash and see if I can spy Santa coming down the chimney.

Have a wonderful holiday!

My Heart Grew Three Sizes that Day

How is it that I spent Tuesday afternoon at UCSF Benihoff Children’s Hospital spreading Holiday cheer and came home with gifts for Maggie, who is not even a patient? How is it that I came away more in awe of the brave children in the hospital and the tired families who support them?

Mostly it’s due to my young friend Justin, who is stuck in the hospital for Christmas. I met Justin because his mom and I are both on the Family Advisory Council for UCSF. Both of our kids are “frequent flyers” or regular patients at UCSF. Now that we have everything set up at home, we are able to keep Maggie out of the hospital more than in past years. We are up there a lot, but it is mostly as an out patient.  Justin totally wins the frequent flyer miles, and he can HAVE them. Apparently he is now donating some of those points he’s racked up and giving away his swag. What a kid!

Like many kids in the hospital at this time of year, Justin is receiving gifts from several sources; he is benefiting from the kindness of various groups and individuals who remember the sick kids at Christmas.  One of those gifts was a stuffed Grinch, which is pretty cool. He insisted I take the Grinch and give it to Maggie because she would enjoy it more than he would. Wow. That’s some kind of generosity.

Justin has cystic fibrosis and he has been in the hospital more than he has been out this year. He had an opportunity to go home on Tuesday, but this very mature 14 year old boy opted to stick with the original plan, finish the regimen he’s on and try to avoid (yet another) return trip to the hospital in a week or so. That means he will be there over Christmas, but it doesn’t matter. He wants to get better and do everything to make that happen. His parents Tina and Rob hang out with him as much as possible taking shifts away from their business and do what they can to make it work.

The three of them are a team fighting this disease with all their might. They fight for Justin specifically and raise money for research to cure cystic fibrosis (CF), which is a gruesome disease. There is a lot of progress and advances in fighting CF and this family won’t stop until there’s a cure. In addition to the cool Grinch, Maggie got a t-shirt with “Climb for the Cure” to fight CF, one of dozens they were giving away.  This family is tireless in their fight. This picture was taken when we stopped in for a visit after the CF walk that took place at Crissy Field in May. Justin's family was barbecuing and about half the nurses from UCSF were part of Team Justin helping to raise money.  

In the hundreds of hospital admissions and stays Maggie has had in her life, we have never been in the hospital at Christmas. She spent her first Christmas Eve in the ER and I had to fight to take her home, (see Maggie World: No Admission), because after all she and her brothers had been through that first year, I was not going to have her in the hospital at Christmas unless she needed the ICU. I managed to talk them out of admitting her, went home for Christmas and I think she was admitted on the 26^th of December. Seeing all these families facing the Holiday in the hospital was surprisingly difficult for me. I know how it feels to be stuck in the hospital; you are exhausted, worried, tense etc. You want to make everything great for your child and you can’t. Top all of that off with missing the Christmas festivities and it is too much. 

As fun as it sounds, my attempt to spread Holiday cheer at the hospital was not just going into kids’ rooms and stealing their gifts. There was a cookie party planned for Tuesday afternoon. Many of us brought cookies to offer a short break to parents whose children are admitted to UCSF Benihoff Children’s Hospital for the Christmas Holiday.  It’s nice to offer something nice at what is such a low point for so many families.

 The cookies were great, but they turned out to be just the dessert. Brian Wilson, pitcher for the SF Giants (FEAR THE BEARD) took the whole party up several notches and donated an entire turkey dinner with all the trimmings for the families stuck in the hospital. A meal like that is an incredible gift at any time, but to do it now, at Christmas, is amazing.

 I have to tip my hat to Brian Wilson because unless you were at that party or you are reading this blog, no one is going to know he did that. Well, Brian, I know. And I think it’s very cool. Fear the beard? Pshaw! You’re just an old softie.  Oh and by the way, Bri, I know a certain Giants fan with the same generous spirit as you. His name is Justin. Pop in and say hello.

Visions of Sugar Plums, San Francisco style

The refrigerator is full and I still have a lot of shopping to do, but I can't really do any more until Friday or nothing will be fresh. I've been trying to lay in all the staples and prepare what I can ahead of time. I have three containers of pasta sauce ready to go and there is more cheese in this house than there has been all year. I don't know why I bought so much cheese but we have enough to last well into January.

Christmas Eve dinner is here. It has been for the past 15 years or so. My parents and my aunt came here along with my sister in law and niece because my brother always had to work. Every few years Steve's parents would be here too. Other siblings either stayed home or went to their inlaw's homes. Now my dad, Steve's mom and my aunt are gone, and I feel it most when planning this dinner. On the happier side, my brother has a new career so he joins us too. This year Eddie's girlfriend is coming too. We will be eleven.

We always have cracked crab and ravioli. It's tradition, though I'm not really sure why. I don't even eat crab (allergic), Steve eats just a bit, Eddie eats nothing that swims, my niece Emma is a vegetarian and Maggie obviously has her own food. But it's Christmas and this is WHAT WE DO. The other six will love it. Actually I love it too, even if I don't partake. Crab season starts around this time of year and many homes in the San Francisco area have crab.

I ordered the crab from Swan's Oyster Depot and it will be fresh when I pick it up at 10AM on Christmas Eve. The line will be 20 deep all day long, just for people picking up previously ordered crab. One Christmas Eve I didn't order it ahead of time and I was out of luck. I paid much more for shelled crab. Folks loved it but it's not as much fun as cracking the crab, finding the meat and piling up the shells.

Every Christmas Eve I spend about two or three hours buying the freshest possible food. It's another tradition and I love it. I stand in line at Swan's then at the Italian deli for the ravioli and then at the bakery for fresh sourdough. I used to wait over an hour at a separate bakery to buy fresh foccacia bread, but no more.Something had to give. I will buy that tomorrow and the boys can scarf it down on Thursday. I actually have fun because everyone is in a great mood doing the same thing. If they are shopping at these stores, they know they have to wait and it becomes part of the tradition. I have great conversations with people in the line.

This year I think Maggie and I will head out early and make the crab our last stop. When Maggie is with me people are especially great. She entertains everyone - but we never get cuts.

She's charming, but not magical.

5 days and counting

Greeting cards have all been sent, the Christmas rush is through....

OK, not really, but I'm getting there. Most greeting cards have been sent except for the few addresses or zip codes that I need.  I have one gift left to buy and I generally know what that will be. Maggie and I will head out this morning. 95% of things are wrapped, mostly thanks to Steve.

I do  have two problems, though. One problem I cannot control and the other is something I just have to do but keep procrastinating to avoid it.

I cannot do anything about the weather, but I have a nagging concern that the boys wont's be able to make it home for Christmas. It's been storming for days and it's supposed to continue right through next weekend. The mountains have received something like 5 feet of new snow and the roads are terrible. Tim should  make it because he can just wait for a break in the weather and go, and then he will be here for a few weeks.  Eddie and Grace are coming only for a day or so because Grace has to work in Reno on the 23rd and the 26th. Then they are moving to Orange county on the 28th. A major storm could prevent the trip here. I know they can go to spend Christmas with Grace's family if need be, but I really hope they make it. I have to just let go and hope because it is completely out of my hands.

The procrastination involves the stacks of papers on the dining room table. I have whittled it down as far as possible and now have a pile that I really don't know what to do with. None fit into any categories I've created, but I can't seem to just toss them either. It's not like I can hide them anywhere, the house is full to overflowing with Christmas gifts, decorations and even extra furniture.

We borrowed the "chill out" chair for Maggie for the vacation. This chair is made entirely of foam with a deep cut out for the body, so Maggie doesn't fall out of it. (I don't leave her alone in the room, though) She can sit in something other than her wheelchair  for a break. Generally in the evening she wants to get out of her wheelchair and she ends up either laying on the floor or sitting with Steve because I really can't hold her for long anymore.

 Being on the floor often makes her cough uncontrollably so she hangs out with dad. This chair gives both of them a break and Maggie finds it very entertaining to just lounge like the teenager she is.

This chair is enormous, though and it is taking up the portion of our living room that is not overrun with wrapped gifts or Christmas decorations. When (and if) everyone arrives for Christmas, we will have to take the chill out chair downstairs.

OK, procrastination ends now. I will let Maggie help me sort the papers. THAT should take care of things.

yes, Virginia, Santa Claus is everywhere

There have been a number of Santa and Santa like sightings this week. It seems the spirit of giving is alive and well. So I have to agree with the old quote "Yes, Virginia, there is a Santa Claus.

Maggie and I just returned home from school. It is the last day before the two week break for the Holidays. Like every other classroom in America the day ended with a party. I'm not sure how many of these other parties were dance parties featuring mostly wheelchair users, though. It was hilarious and the kids had a great time. Teacher Joe, who was Maggie's middle school teacher,  took Maggie out of her chair and danced around the room with her. Maggie loved it.

Earlier in the week the class took the streetcar out to the Stonestown shopping mall to shop and check out all the decorations. In past years they've headed downtown to Union Square, but the weather was questionable and the mall was warm and dry. I didn't join them on that trip, but I know Maggie cam home from school very tired that day, and that is a good indicator that she spent a lot of energy jumping and laughing.

Maggie's friend Juan found something that caught his eye at one of the kiosks in the mall. It was a remote control helicopter. He was looking at it carefully. The kids were gathering for a photo with Santa and the kiosk was right near Santa's hangout. Juan went with everyone else to get the picture taken but returned to the Kiosk afterward. Mr David, (the same guy who wore the horse shirt in yesterday's post) helped Juan count out his money in the hopes of buying the helicopter. Juan did not have enough money to buy it, the gadget cost $35. David was explaining to Juan that it cost more money than Juan had. Obviously, Juan was disappointed.

That's when it happened The Christmas spirit, the kindness of strangers, whatever you want to call it. The guy in the kiosk simply gave the helicopter to Juan. A $35 toy was just handed over. Juan went from disappointed to over the moon. What a nice thing to do. That vendor absolutely made Juan's Christmas by doing that. I wonder if he knows what a big deal that was.

Perhaps catching some of that spirit, Santa Claus himself was very accommodating to the class. He let everyone in to take a picture together. Maggie, who claims not to believe, was convinced Santa was the real deal when she was allowed to touch his beard.

Maggie will miss her friends over the Christmas Break, This is her social circle and, without them she gets very bored. I can see why, they are a good looking group.

Robert, Maggie Santa, Juan and Tyre 

On behalf of these amazing kids and the amazing people who teach them and help them and love them, I wish you all the best Holiday season and I hope you too find Santa Claus everywhere you look.

Wild Wild West

Getting Maggie dressed can be a chore. There is a lot of lifting and straining to get her shirt and pants on. Maggie helps some. She can help pull her arms through the shirt, for example. She can also be a hindrance, though. Maggie find is hilarious to try to rip off her diaper as one tries to get her legs through the pant legs. Preventing that is difficult. I find myself in the most unusual physical positions getting her dressed. I use my elbow and forearm to cover the front of the diaper while leaning my body back toward her upper body to prevent her from falling. All of this while I'm feverishly working to get her legs into the pants. Maggie finds this game to be hilarious. I find it exhausting.

Generally on school days the nurse has her all dressed when I come downstairs at 6:30. I don't argue with that. It makes my life easier and Maggie is half asleep while she's getting dressed, so there are fewer games. That means the nurse chooses what Maggie wears to school. That's also fine with me. If she needs to wear something specifi for some reason, I lay things out the night before. There have been a few "misses" but generally Maggie looks great.

 Etoy, the night nurse here on school nights has good taste and a good sense of style. She also bought many of Maggie's clothes, so she knows what she' wants to put on her. Every time Etoy goes home to Houston she comes back laden down with gifts of clothing for Maggie.   This summer she brought Maggie this pink and red shirt with a large horse head on the front. Etoy calls it Maggie's "Texas" shirt.  Maggie loves this shirt, but I have to say it is a very unusual shirt. .

Yesterday Maggie wore that shirt to school. The teachers were asking Maggie about it and she was proudly pointing to the horse on her shirt. They commented that it is not the type of shirt you seen in San Francisco's Mission District. Mr. David, a very cool guy and one of the aides (paraprofessionals) in the classroom said, "well, wait a minute. I am wearing a horse shirt today too". His shirt was underneath a couple of layers, but when he took those off the tow of them were in matching shirts. Ok, his wasn't pink and red, but it was the very same shirt. Maggie was thrilled.

Of course I didn't know anything about this until I received this picture on my phone.

Maggie looks very pleased, doesn't she. 

Apparently this is QUITE this shirt for San Francisco's hip and happening Mission District and mom i hopelessly out of touch again.  Who knew?

The Most Wonderful Time....

Tuesday morning dawns rainy and wet. the start of several days of expected rain. Oh well, it is December, after all. It is curious to me that Christmas, Hanukkah, Kwanzaa, Yule and holidays from all the religions fall in the coldest time of the year, at least in the Northern Hemisphere. Many attend church services only this time of year when everyone is coughing and sick. Talk about sharing at Christmastime! "Hello sir, peace be with you, have some germs."

I understand that all these holiday are rooted in tradition and each brings hope and light at the darkest time of the year. I'm just saying, the darkest time of the year is also cold and flu season. Keeping Maggie healthy this time of year is particularly challenging. It always has been, but especially so since she's had the tracheostomy tube. It's like a germ superhighway into her lungs.  We are fighting off infection left and right. My hands are raw from washing.

Maggie seems somewhat healthier today. Perhaps this medication that is causing such problems for her gastrostomy tube is actually working. I had to change the tube four times last week and it's not very comfortable for her. (Usually the tube lasts more than a month). Even though we flush the tube after giving the medication, the residue seems to harden inside the tube and it becomes totally blocked. That means no food can get in and we have to fix it. Obviously I don't have that many clean tubes, so I've been washing them and re-using them, which is not cool. New tubes are on the way. Maggie has another week of this medication to go, too

Though changing the gastrostomy tube is a hassle for me and uncomfortable for Maggie I am glad the medication seems to be working. Maggie has this chronic condition that rears its ugly head periodically. There doesn't seem to be a thing we can do to fix it and the medication is simply a band-aid. We have tried various medications and not all of them work. Dealing with a blocked tube is a small price to pay if it works. Let's hope it keeps the symptoms at bay until after Christmas, at least. I'm so overwhelmed with all the holiday madness I don't think I can squeeze in an afternoon at UCSF.

Of course if we have to go, we have to go, but I would prefer if we did NOT, thank you very much. The hospital clinics are the worst place to be if you're sick. All that coughing and sneezing, it's worse than church.

Stay healthy, my friends.



.

Christmess

Christmas Shopping !

It's 7AM Sunday morning and the house is completely torn apart. We got the tree yesterday and it's up, but all the decorations are spread out in the living room. The dining room table is also covered with unfinished work projects, Christmas cards, wrapping paper etc. For the past 30 minutes I have been sifting through determining what can go back down to the basement, what can be recycled, what goes upstairs etc. It doesn't look a bit different, so I'm walking away for a few minutes.

 Maggie continues to display some troubling symptoms, but is happy and on the top of her game. The new medicine Maggie is on is so thick it is wreaking havoc with her g-tube.Someone told me coca-cola was a sure fix for a clogged tube, but even that didn't work.  I had to change it again last night, that's three times this week. That, however, is the only dark spot in this excellent week.

As you know Eddie graduated last weekend. On Friday he was offered a full time job doing exactly what he wants to do, marketing for a bike company, and specifically focusing on mountain bikes.  I could not be more excited for him. The next few weeks will be a whirlwind because the job starts January 1 in Orange County. He has to find a place to live and get himself moved down there between now and then. This news has had an amazing effect on all of us. and it's making me feel the joy of the season.

Friday evening I went to a reunion of a law firm I worked at from 1983 - 1991. I left when Tim was just a year old. There were about 50 people there when I left and I knew 3/4 of them even though I hadn't worked there in 20 years. It was great to see faces of people I hadn't seen and always great to reconnect with those I do see. My life is do completely different now than it was then, but those were certainly some great years.  I could only stay a short time because we were headed to another office Christmas party. Whew.

              Last night we did something completely different. We went on a living history tour of the ships on the Hyde Street Pier. The players were dressed in costume from and acting as though it was 1901. It is hard to see in the picture, but we are being escorted onto the ship "Balcutha" by our night watchman.  We me some of the sailors in the "fo'c'sle" and then met the Captain and his wife in their quarters and learned how they celebrated Christmas on these ships in 1901. It was very cool and the lights of the City were lovely. We had dinner on Fisherman's Wharf afterward and then came home to unclog the tube. No rest for the wicked.

Now I'm done with my Christmas social outings. I am staying home, finishing the shopping, writing the cards and mucking out the house.  

Long May you Run

Volunteering comes with great rewards. Generally, those rewards are in the form of quiet satisfaction that you have helped someone or given back to your community, which is plenty. Occasionally, though, there are tangible perks too. I received one of those last night in the form of free tickets to a benefit for UCSF Benihoff Children’s Hospital. The benefit was a concert featuring Neil Young. It was great! Members of the Family Advisory Council (FAC) were invited to attend the concert. I saw at least five of my fellow council members there. These people are my peers, all of us are parents of kids who have (or had) medical issues and are cared for at UCSF.

Steve was supposed to pick me up and we would head downtown together. He did not get out of his meeting until late, though and he was 60 miles away.  I had to get myself down there to pick up the tickets. It was raining and I was cutting it close. I knew parking would be a nightmare near the venue (some people waited in a long line to pay $40 to park.) As I neared downtown, I considered my options. I spotted a car pulling out of a place on the street, grabbed it and hopped in a cab for the last mile or so. It was brilliant.

Just as I was walking in, the nurse called from home. Maggie’s feeding tube was completely clogged and she could not get the food to go in. I told her how to fix it, but it would not work. I called Steve but he was already nearing downtown. I called my neighbor to go help her, but she was not at home. I knew I could fix it in about 10 seconds, but I could not get home.  I had no choice but to have her change the tube. It was a waste of resources, but fixed the problem.

After all the drama and excitement or getting there and dealing with the tube issue, I was hoping for a relaxing and entertaining evening. I was not disappointed. The beginning of the concert was delayed, which gave Steve time to get there. We were told they were waiting for President Clinton to arrive, but that never happened. The evening started with General Colin Powell giving a bravery medal to Paddy, a 12-year-old cancer survivor, which was very moving. Stevie Wonder and his entourage walked right by our seats a couple of times, which was pretty cool. When Neil Young took the stage, though, I did not think about any of that. I was back in high school and college days listening to song after song after song from that era.   

Heidi, a fellow FAC member was sitting next to me. She was amazed that I knew the songs. She was not yet born the last time I saw Neil Young live. She had no idea of his significance and trying to explain the shootings at Kent State and the importance of the song “Ohio” was mind boggling to me. I realized that my “peers” on this council could easily be my children.

That was a special moment for me.

It did not matter, though. As that music played, I was 18 years old and did not have a care in the world. We got home around midnight. When the alarm went off this morning, I did not feel 18 any longer. 

Have a listen to "Long May you Run" http://www.youtube.com/watch?v=nszR0tfp4Es 

And as I said on my facebook status, if you are too young to know about Kent State go look it up. Then listen to "Ohio" which was released just a few weeks after Kent State and you may start to understand the importance of Neil Young to that time  

A Breath of Fresh Air

People are often surprised when they learn Maggie’s age.  She is very small and does not look her anywhere near her age.  I am used to the shocked “16?!?!?”  when they politely inquire. I have no idea what they think her age is – I stopped trying to figure people out a long time ago.  If I get any reaction at all, its more about me than about her. I hear – “You’ve been taking care of her for 16 years?’ Wow.” (It is  nice, I suppose, though I’m never sure how I’m supposed to react to that.) I just think of her as a little girl – just as any mother would.

Recently I had the great pleasure of spending some time with a charming 6 year old girl who came to visit. Not that I ever thought it was the case, but I learned from that visit that Maggie is definitely not like a 6 year old either.  

The little girl, “Z” is the daughter of the man who painted our house last Spring. He was here to do some touch up work the day before Thanksgiving. It was a school holiday and Z was accompanying her dad. She was here only a few minutes, but she was a breath of fresh air blowing through the house. I invited her in to meet Maggie while her dad worked outside. She enthusiastically agreed and marched right in before her dad could say yes or no.  

I have to describe her outfit before I continue. Very few people could make this combination of clothing work – but she did. I’m guessing she dressed herself and that she chose her outfit with great care.   She had a red print jumper over a multi colored (no red) shirt with a completely different print, striped tights and black glittery Snow White shoes. She was absolutely adorable.

I introduced her to Maggie and Z waved and said “hello.” Slowly Maggie waved back. I started to tell Z about Maggie to eliminate any concern that Z might have. Not necessary. She was not concerned in the least, she was curious. She asked Maggie a couple of questions, and I told her what movements Maggie makes to  say “Yes” and “No”. That was highly amusing for both girls.

Z looked quizzically at Maggie for a couple of moments. I knew she wanted to ask something and I waited. Obviously, a little girl will have a lot of questions about someone as different as Maggie. I anticipated questions about her talker or how I understand her or whether Maggie hurts. What I didn’t expect was a practical question.

Z put her hands on her hips and said, “How does she get in her bed?” I stifled a laugh because the question was so innocent and so wise at the same time, and she was quite concerned.  People don’t ordinarily consider the logistics of Maggie’s life. But there was nothing ordinary about this girl. I  told her we had to put Maggie in and out of bed. That completely satisfied her.    In another minute she was telling us about a friend at school who uses a wheelchair but according to Z “she can still talk, though.” It was so matter of fact and so energizing at the same time.

Maggie laughed as Z told us about their planned trip for the Thanksgiving weekend. I told her Maggie wanted to go with her and Z was all ready to pack Maggie up for the ride. Her Dad came back in and told her it was time to go, she wanted to stay longer but cheerfully said her goodbyes to Maggie and left with her Dad.

Maggie and I laughed after she left because we haven’t had such excellent energy in this house in a long time.   I looked at Maggie and realized that despite her diminutive appearance, Maggie is  not such a little girl anymore She looked positively weathered next to Z.

I can’t even imagine what I looked like.

Graduation

Eddie and his girlfriend Grace

We survived graduation weekend. Maggie survived the weekend without us. I am exhausted, but very happy we went. 

Eddie had an entourage in town to join in the festivities. There were 11 of us for dinner on Friday and 15 for lunch following the graduation. We went to an Irish Pub for lunch and the food and service were both excellent. The menu was hilarious with various Irish dishes, real (Sheperds' Pie) or invented (Irish egg rolls). Steve felt compelled to order the "Scotch Eggs" which are hard boiled eggs rolled in sausage and then deep fried.It sounded like something that would stop your heart immediately. I tried a bite. Not delicious, but not as disgusting as it sounds, either.

The highlights - well, graduation itself, of course. My mother wearing all silver jewelry because she was in Nevada, the Silver state, and putting Grace's parents, who we just met, through the acid test of an outing with our family. 

 

Missing the Pomp because of the Circumstances

At a time when I should be beaming with pride, I am nervous and sad. Eddie is graduating from college on Saturday and we are going to be there to witness this with our own eyes.  I'm scurrying around getting things in place for my 48 hours away. Yes, for only the second time in her life, we are leaving Maggie for two nights. She will stay home with the nurses and Steve and I will head up to Reno for the graduation.

I am very proud of Eddie, but that pride is clouded somewhat. I wish Maggie could come with us and tried everything possible to make that work. This is an important family milestone and she has to miss it. That makes me incredibly sad.

The amount of equipment we would have to bring is daunting. Oxygen, nebulizer, suction, compressor, trach collars, 12 different meds,  feeding tubes. diaper, catheters, food, etc etc etc.  Plus we would have to bring a nurse to cover some of the time or Steve and I would be on duty 48 hours straight. We have to at least be awake enough to see Eddie in his cap and gown. I was in the midst of arranging all that when the reality of 20 degree weather stopped me, well, cold. Maggie has never been in weather that cold and she is especially fragile this time of year. Besides, if they get a snowstorm how would we flatlanders ever be able to maneuver the wheelchair. Maggie will be more comfortable at home. But it still makes me sad.

I switched gears and hired nurses to fill the extra time that I usually cover. All are her regular nurses, so they know what to do. My neighbor Debbie, who is also a nurse, agreed to be an emergency contact for simple things. Obviously anything big and they have to call 911. Right after that they have to call me. There will be multiple phone calls, but I hope they are all coming from me checking in.

 I made a flight reservation home for Saturday night in case there are any problems. If all is cool I won't use it, but I will drive home with Steve on Sunday. Flying is not really any faster when you consider the security check in time. But in the event the roads close I need to know I can get out. It takes about four hours to drive without being slowed by snow or traffic - both of which are very likely. Reno is not the problem, weather wise, it's getting TO Reno. We have to cross the Sierras and that means going over elevation exceeding 7000 feet before heading back down the other side of the mountains.

Maggie will be fine. She will be mad at me when I get back, but she will be fine. This weekend is about Eddie.