ExquisITALY

Gourmet store in Roma. The name describes our trip.

Italy was fantastic. The country is beautiful, the people are friendly, the food is wonderful and the sights are unbelievable. We walked and walked and walked - averaging 10-12 miles a day according to the app on my phone. You don't even realize how far you are walking, though, because everything is so captivating.

Our trip started in Florence and then we went to Venice and Rome and the Cinque Terra, finally returning to Florence to fly home. Each place was amazing with its own wonders to offer.

Florence from Piazza Michaelangelo

Dead End in Venice

Colosseum in Rome

Hike in the Cinque Terra (I complained a lot)

If you are in a position to take a trip to Italy, I highly recommend you do so. I watched people throughout my trip and the Italians are very warm. They greet each other enthusiastically and put up with a lot from the hordes of tourists there.  Sure, they make a lot of money from the tourists, but that doesn't seem like the motivation. They know what they have and they are happy to share it. They are taking the time to live and enjoy their lives and they live in a beautiful place with a rich and important history and culture.

Italy has a lot of churches. I mean an incredible amount of churches. The big famous ones have long long lines to get in. We went into St. Peters Basilica in Rome and into the Duomo in Florence. But in addition we went into many smaller churches, especially in Venice and Rome. Every single one was fantastic and filled with unbelievable art. These smaller churches would be unbelievably grand in the USA, but they were more "average" in Italy. 

Suffice it to say I lit a LOT of candles for Maggie in churches all over Italy.

Maggie's candle is in the top row, of course

I also threw a coin in the Trevi Fountain for her.

I have to share one strange and wonderful incident. When we were approaching the Colosseum in Rome I saw a young man in a wheelchair. He reminded me very much of Maggie. He was a tourist along with his dad. There was a musician playing and the dad pushed the boy up to the basket and helped him drop a coin in the basket, just as I did many times woth Maggie. That one moment really took my breath away. I miss Maggie every minute of every day, but in that moment I felt her with me. 

I wanted to say something, but I didn't. What could I possibly say? I just had to enjoy that moment and miss my daughter and return to the sightseeing with a sad smile. I didn't even tell Steve because he was fixated on some ruin at the moment.  Still, it had a profound effect on me. 

A couple of days later we were leaving our hotel, which was on a quiet street just a few blocks from St Peter's Basilica a few miles away from the Colosseum. This was not a big hotel, but a bed and breakfast on the 5th floor of a non-descript building on a non-descript street. As we were leaving a tour bus was letting passengers out. It was the only tour bus I saw near our hotel because we weren't that close to the Square and there was nothing of particular importance near us. I watched as people got off the bus wondering "why here?" Imagine my surprise when I see the same man carry the same young boy off the bus and someone follow with his wheelchair. I felt like it was a sign. Not sure what the sign meant, but I felt Maggie's presence very strongly. 

I guess that was to be expected. I always bring her with me. It has become my habit to pack one of Maggie's scarves whenever I travel. It's a little tangible reminder that she is with me. This is not something I talk about, but it has become part of my routine. When we arrived in Florence and started arranging our things, I noticed a scarf in Steve's bag too.

 He does the exact same thing and we never discussed it.  So she was with us on the whole trip.

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Bonus section  I wasn't kidding about the food. here are just a few examples. I don't even have any main courses in there because I always ate it before I remembered to take a photo.

 "Eataly" is right

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.

Salute to Laundry

You cannot imagine the amount of laundry Maggie generates. There is at least one load a day, sometimes up to three. This is of course in addition to the normal amount of household laundry.  I have to stay on top of it or it swallows us. Generally I start a load every morning while we wait for Maggie's bus and then do another when the bus comes back.

A couple of days last week I didn't do that and things started to pile up. The pile gets so large the task becomes daunting I find myself delaying another day, which causes the pile to grow and so on.  I realized we were running out of clean scarves and I had to get things washed to replenish the supply. 

Maggie always wears a scarf around her neck over the trach tube and it is not unusual for her to through eight or ten scarves a day. Maggie has am impressive collection of scarves. They are in all colors and designs, many because people reading this sent them to her. We probably have fifty or sixty of them and use every single one. When the supply is running down, there's no more procrastination, I have to get on it.


Yesterday I devoted the day to getting caught up. There were at least seven loads down there and at least five of those were Maggie's. I folded things and put things away all day. The last of it was done last night while Steve and I were watching television. Folding laundry is mindless but necessary. Television is often mindless but entertaining. It's good to combine the two things

Steve was folding the last of the dozens of Maggie's scarves we washed yesterday. As I went to put the last of them away, I realized folding laundry may not be QUITE as mindless for Steve as it is for me. He didn't say anything, but left this for me to discover. He folded all the scarves normally - except one. The scarf in the American Flag design was afforded proper respect and folded like a flag. I could not help but laugh.

I have to wish my comedian husband a very Happy Birthday today. 

Maggie and Sophie

The blogosphere is a funny place. You write your heart out and send the words off into the void not knowing who or even if anyone is reading. Then you get a comment here or an email there and you realize people are checking in and want to know what's happening in Maggie's World.

I see the sidebar listing places where I don't know a sole, but I know I have faithful readers in Thunder Bay, Ontario and Euless, Texas, to name just a couple of places. I read other peoples blogs too, mostly about other children who live with challenges like Maggie's - or different from Maggie's. Obviously I find a lot of similarly situated families and it's easy to connect on the internet.

 Sometimes you even develop friendship with this unseen readers, like I have with Elizabeth, who authors a lovely blog about many things including her 16 year old daughter Sophie. (check out her lovely blog here). We've never met face to face, but we have formed a connection. I told my sister in law that Elizabeth was re-opening her cake business (Heavenly Cakes) and Elizabeth made the cake for my brother's surprise party last week. I recommended her without hesitation even though I've never met her and never tasted anything she's baked. Sometimes you just know.

 We wonder if we can get our girls to meet someday, but the disabilities of each make that difficult to imagine. Still, we have decided Maggie and Sophie are friends. I don't know about Sophie, but Maggie is delighted to go along with that.

Especially when GIFTS arrive in the mail from this friend.

Maggie ripped open the pretty pink tissue paper to find two scarves from The Salty Dog Cafe on Hilton Head Island. Sophie lives in Los Angeles, but has her peeps shopping all over the country! Maggie was beside herself with the two scarves and doesn't really care if this friendship was invented by their moms. She thinks Sophie is A-OK

Thanks Sophie. Maggie couldn't decide which one to put on, so she thought she'd just hold both of them. They're blurry because she is shaking them, which is what she does when she's excited. Tell your mom thanks too.

Fashion Package

When I picked up the mail the other day there was a large bright green envelope addressed to Maggie. I noticed the return address was that of Joan P., an old friend of my parents. I admit, I was curious, but I had to wait for Maggie's bus to arrive so she could open it. After all, it's not like Maggie gets mail every day. (Well, actually she does, but it's never anything fun, just insurance statements, medical bills and notifications about services.) I knew the bright envelope would entertain her no matter what the contents.

When she arrived Maggie was delighted to have the envelope on her tray. She pulled and yanked. Finally I helped her open it and she pulled out a soft inner package in wrapping paper along with a note. I read Maggie the note as she ripped the wrapping paper to shreds. Joan said in her note that she admired how Maggie always had a scarf that matched her outfit and sent her 5 more in various colors. 

Maggie has a ton of scarves, but she needs them. She sometimes goes through 10 or more in a day.  They serve various functions. They cover the trach from prying eyes, the catch secretions and they look good. We try to emphasize the last function. 

The five new scarves were still on the table on Saturday when Steve and Maggie and I went for a walk in Golden Gate Park. In an amazing coincidence, we ran into Joan P, and I think that's the first time that has ever happened. Of course I've seen her at events and things numerous times over the years, but I have never crossed paths accidentally. She knows all about Maggie from this blog and gets news from my mom, but she had never met Maggie first hand.  Funny how the universe works  Maggie started out a bit shy, but she gave Joan a big laugh and wave when she heard it was the lady who sent the scarves. 

Yesterday Maggie wore the cool black and pink one and I don't mind telling you she looked HOT

(Note Maggie flashing the peace sign to match the peace sign on her sweatshirt. That is purely coincidental. Maggie cannot generally isolate the movement of her fingers like that.)  The only thing that was deliberate was matching the hot pink outline of the scarf with her hot pink shirt (not visible) and the sweatshirt.

Thanks, Joan for your thoughtfulness and your contribution to the Maggie fashion fandango! The bright green envelope was also great.

Practical Fashion

Occasionally a woman has a fashion accessory that defines her.  Queen Elizabeth and the Royal women of England wear hats, Elizabeth Taylor has diamonds, and Paris Hilton has her little Chihuahua. Not to be outdone, Maggie McDonald has her scarves.

You may have noticed in all of the posted pictures, Maggie is wearing a cotton scarf around her neck. It has a practical basis – that is to catch all the secretions from her trach – but it has become a fashion statement.  We take care to either match or compliment her scarf with whatever outfit Maggie is wearing. We have amassed several over the three years she has had the trach and the scarves have become Maggie’s signature. When I was folding the laundry yesterday I counted 30 of them in the basket. Those are pictured below. There are at least another 20 either in the drawer or in the hamper. We need a bunch of them because Maggie goes through at least 10 a day.  .

Maggie’s scarf collection includes every color of the rainbow and several different types of designs. The only requirement is that the scarves be cotton (the understanding that “cotton breathes” is highly significant in this case) and big enough to go around her neck without strangling her. The most common is the “kerchief” style. Whenever I see them, I buy a few, especially if they are available in interesting colors. Some of her best scarves were presents from my brother Pat and his wife Julie. They gave her a Ferrari scarf from Italy, a fish scarf from Tahoe and a scarf with survival tips on it just before she started high school. Our friend Lexi gave her a couple with topographical maps of Yellowstone National park. Her teacher Ms. Taylor dyed and 

embellished a couple of them to match her prom dress and the formality of the evening.

I am always interested in growing the collection or replacing those worn out soldiers who have given all of their fibers in the interest of fashion and health. If you know of interesting cotton scarves available, please send me a link. The kerchief are available everywhere, I’m looking for the more unusual scarves so that Maggie can set herself apart from the normal scarf wearing teenager.

 Maggie is not the only one sporting a scarf in this house. Recently we added a scarf to another member of the family. We have a "guard duck" named Shirley.  She is made of stone and guards our front door. Shirley the duck has been on our huge front porch for 24 years. (That's the "porch" in the picture She was a wedding present for Steve and I from a woman named Shirley, so naturally we named the duck after her.  Age and weather are taking their toll on Shirley the duck. A piece of her neck simply fell off her and onto the front porch. Steve glued it, but it did not look good.  No problem. I grabbed one of Maggie scarves and tied it around her neck. Now she guards and looks fashionable.