Color me Bright

Doing something you like to do makes for a really fun day.  It passes the time and brings richness to even the rainiest of Seattle days.


I have to guess that when I see Teresa and her marking pens out on the table, that she is having some fun.

And I feel like such a pest when I want to see what she's done that day.  It's kind of rude to bother someone who is busy at work.


It's almost a shame to have to set the table for lunch or dinner and put things away. She can get on such a roll.

A few years ago, we framed her images and created a gallery that we call "Teresa's Collection".

There are lots of good days in those pictures.

The pictures used she decorated used to have many colors and each pattern was carefully and crisply decorated.

A year and a half ago she stopped doing pictures altogether.  A few months ago I noticed she's starting to do them again.  With the pictures that are done now, there is little distinction in the pattern, and sometimes entire sections left empty. 

I know why there is such a difference.  It's the integration of the various seizure medications that is causing her so many problems. It's causing sleepiness, sluggishness and a lack of vigor in her life.  So many of the seizure medications available actually cause bleeding.  For a woman with a bleeding disorder, she has few choices of seizure medicines, some of the few she can use cause unpleasant side effects.  

I can't wait for someone to help us sort it out. 

Prende Caffe?

 

Italians love espresso.  And the art of drawing a precisely great shot from your espresso machine (a shot that has a layer of crema at the top) is considered a legendary experience and one taht must be acknowledged with every shot.  ("Oh, that's a nice shot, look at the crema on that!"), And you must (absolutely) add ample sugar to your tiny espresso cup with a very tiny spoon.  

Teresa and I even add whipped cream to the top of ours, what the heck.

The phrase at our house on the weekend mornings is always, "Prende caffe?", which means would you like coffee?

But making espresso really leads to the bigger question,  "Do you want to hang out with me for a while in the kitchen?"

Which leads to, "Do we want to just make an espresso?" (which means "Do you have10 minutes?") or "Do we want to make mochas?" (which means "Do you have 20 minutes?").


And once the process begins with either an espresso or a mocha, the next question is,
"Do we have any biscotti's in the cupboard?" and then, "Do you want the hazelnut one or the chocolate one?"

And once all that is settled, and whoever wants to hang out in the kitchen, has arrived and the smell of espresso is in the air, the drinks are sipped. 

Next, we have to see what's going on outside the kitchen window and what flowers are new for the day.  If there are new blossoms, that warrants a walk outside to check it out.  [We don't want to talk about the days that ALL the beautiful flowers have been snacked, on by a visiting buck, we call Truman.  He's not welcome and neither is his family, no matter how cute a fawn is to look at.]

If we are having a mocha, which takes longer to make and to drink, we might ask, "is there a good movie on TV tonight?" or "if you are going to the store, what is available for $1 in Red Box?".

So the innocent question of "Prende Caffe" can mean lots of things but most of all it means we are having a good day and getting ready for more things to come.

When Teresa needs an infusion for a bleed, there is usually a promise of a latte from the nearby Starbuck's in the adjacent hospital lobby.  No matter if it's in the morning or afternoon or evening.  After all, espresso also comes in decaf.  We don't skip having a daily espresso, latte or mocha unless there are serious medical situations (like those days in ICU).  It's a priority in any Italian's lifestyle. And we only sneak our lattes into hospital rooms if the nurse agrees.  After all a hot latte right before they take your temperature could lead to some bad conclusions in someone's chart.

The Riddler

Italian family dinners are full of wonderful ingredients, conversation and memories.

Ours are just great, but we have one thing that other Italian dinners don't have.  We have The Riddler.

Who is that?  She is none other than our oldest daughter who, when we least expect it, pulls out one of her Riddle Books or Joke Books and begins to grill everyone at the dinner table for answers.

And by everyone that means aunts, uncles, cousins, parents and sister.

When did this begin?  She's done it for years.  A kind of talent that shows both that she is an extremely well-spoken young woman, but she is also quite a wise guy.  I mean wise-gal. 


And, she generally waits until everyone has had too much food and way too much wine and then she begins her inquisition.  It's like she knows when everyone is weak and can't fight back.  She goes for our achilles heel.

She can be relentless, like "What is the best day of the week to eat eggs?" (Fry Day)(1). Absolutely no one will get that and she knows it.

Or, what do you call a sleeping cow with horns? (Bull Dozer)(1).  Maybe someone will get that one.

And of course, the Knock-Knock jokes such as:
  Knock-knock
  Who's there?
  Dishes
  Dishes who?
  Dishes mission control speaking.(2)

I should mention that we are all more than happy to roll our eyes, shake our heads in disbelief and sit through the dumbest riddles anyone has ever heard. Laughter is, of course, the best medicine.  And, when she brings her joke book to the table, and our Riddler takes the stage, we know she is having a very good day, or in the case of this day, a few good hours in between the seizures, the anxiety and the tears.


References:
1-Greatest Jokes on Earth (Matt Rissinger & Philip Yates; Sterling Publishing Company, Inc. NY)
2-Ridiculous Riddles (Chris Tait;  Sterling Publishing Company, Inc. NY)

Our Annual Retreat

Many people have places they go to every year for an annual vacation retreat.  Some go on cruise boats through the Alaskan waters to see the beautiful glaciers, or they fly to Florida and take a cruise to the Caribbean to escape the cold winter chill.  I know a few people who have inherited rustic family cabins in Eastern Washington where they visit the beautiful vineyards and taste the fabulous wines.   Still others purchase an annual ski pass so they can regularly take their family to ski  in the nearby Cascade mountains.  It seems that what matters most is that it is an escape to something different.

We have such a place where we go one Sunday mid-December, each year.  It's about a two hour drive from where we live.  We prepare a list of the necessary items, usually a week before the trip.  We begin loading the car with the food and other needed items on the list early in the morning and by 8:00 am we are off and on our way.

Our girls hang out together that day, and get a chance to play cards, watch a movie or go to Subway for a lunch.  For them it's an annual getaway without parents, even though it's at home.

Our pit-stop is Cabela's, a store that has hot coffee and early-morning shoppers looking to buy roasted pecans, woolen vests, or guns.  We like the coffee and a chance to stretch our legs.  As we continue our drive down the road, if we are lucky, a little snow will cross our windshield and we will see a dusting on the rocks and hillsides.  And, then the familiar turnoff comes before we know it, over the railroad tracks, the blanket-covered horses and two minutes later, we arrive.

It's the home of my dearest friend, Cam.  Twenty five years ago, we used to work at the same hospital and have coffee breaks together and share our dreams.   She spent time working in legal firms and working with nonprofit organizations.  But, her dream was to have horses and live in the country.  So she gave up her office job and became a farm-hand, working side-by-side with an 80 year old farmer to help him keep his farm, while he taught her how to take care of a farm.  She lived free of charge in a remodeled chicken coop! She later worked her way into buying her own modest farm.  She also loved being a mom, so she has surrounded herself with foster kids who find healing experiences by taking care of  horses, dogs, rabbits, chickens, ducks, turkeys and even a few llamas.

We kept in touch over the phone and through old fashioned letters.  She knew of the trials I went through, of having girls with bleeding disorders from our phone calls, and she proof-read my manuscript, Pooling Blood twice before she would let anyone else look at it, because she found so many grammatical errors.

I sent her letters about my dream of helping girls and women with bleeding disorders all over the world.  When I decided to start MyGirlsBlood, a nonprofit organization to benefit girls and women with bleeding disorders, I ran into a snag.  The State of Washington, (where I would need to file for the application), required at least two officers; a President and a Secretary.  I didn't know of a better person to help me get started, and she didn't hesitate signing up for the job.  She read all the rules, guidelines, regulations and every story that was submitted.  She even helped me create our first website even though she didn't have a computer.  She helped guide and encourage me in those early days. 

And every year, for many years, as our annual retreat, Tony and I visit my friend Cam.  Her boys who are now nearly twenty years old, come out to unload our car grinning at all the food we brought.  Recently, she began having medical problems and more hard times have hit them so they now shop at the food bank.  She says we always bring them the big holiday dinners they dream of all year long.  She helped me with my dream and I'll always be there to help her with hers.

Don't forget to tape the ends

I know that I have a picture somewhere of Teresa stringing beads at summer camp.  There was a picnic table near the icy-cold pool and Sunset Lake.  The camp was called Camp IV-Y and it specialized in providing fun times for kids with bleeding disorders. 

It was "the place" we met a woman with a bleeding disorder.  We just stood there and stared at her.  It was like she was a celebrity.  We thought we would never see another girl or woman with a bleeding disorder.  Now we have met many and know they exist all over the world.  Imagine that.

But that was when Teresa was a teenager.  A while ago.  She still talks about beads.  She has talked about them over the years and I would go to the store at the appropriate birthday moment and purchase a kit (which I couldn't figure out) and another disappointment for both of us would happen.  She would string them, but I didn't know what to do with them.

A month or two ago we found a bead shop a few miles from our house.  The woman showed me how it all works. 

So, I'll tell you.  You cut a piece of wire that is longer than you need.  You put a piece of tape on one end of the wire (so the beads don't fall off).  You put the beads on the bead board and arrange them in a design.  Then, one at a time, you pull the bead off the bead board.  When you're done stringing them, don't forget to tape the other end shut. 

Then you do a few things to close it off with clasps and so forth and there you have it.  I'm still working on making that part work, but it looks like we're going to soon have some success.  I bought a tool.  That should make me feel more confident in saying "Yes, I can do it now."

We've been having lots of fun many days with "Bead Stuff".  Going to the store.  Sorting them.  Looking at them.  Teresa has about 6 necklaces I need to finish.  These little projects make for a nice day.

Hazelnut Lattes, Sunsets and Dad

There is an art of getting seizure medicine precisely right.  The art falls somewhere between chemistry and fantasy. There is a place where the person who has seizures has things well enough under control they can live reasonably normal life without big problems like grand mal seizures or smaller problems like body twitches, jerks, shakes and dizziness.  Teresa had been at the precisely right place for many years and then things just didn't work anymore.

The doctors asked us to chart things that they noticed like twitches or jerks.  So we wrote down daily notes of what we saw and faithfully brought them to the various doctor appointments.  We met several doctors who shook our hands to say hello and then would pass us off to another as they left for a different assignment. 

And after a year and a half of charting and losing the notebook during a hospital stay for a bleeding episode, we finally got our wish which was to have an in-house EEG observation at the regional epilepsy center.

What we found out was this.  Hospitals have lots of fancy equipment, technicians and doctors who are all very curious what would happen if they used their equipment to try to gather more data.  They wore tennis shoes with special soles so they could run really fast if you needed them.  That's all we found out.

Teresa still talks about the great hazelnut latte I would bring her in the morning when I would leave for work after staying there at night.  Her sister stopped by every day after work and they watched the sunset from her hospital room.  Teresa's dad was there all day, every day, watching and waiting along with the monitoring camera that was observing her.  Having some familiar faces and beverages made the stay almost tolerable.  Almost.  I can't really count any of those days Teresa spent during this observation as good days for any of us, but there were a few good minutes in there.

Halloween Party Deal

It's been a long time since I have been to a Halloween party.  Sometimes I get to go as a chauffeur, which is what I did this year.  I volunteered to take Teresa to a community center that promised to have a non-scary dance.  The same community center sponsored one years ago that included a haunted house and it wasn't so fun.  I trusted them when they said it would be non-scary.

So, being a good chauffeur, we found a local costume shop and lo and behold, Teresa became a roaring twenties flapper girl. 

We went to the party and saw the refreshment table.  It had a 5-gallon jug of water and something on a tray that extended the length of the table.  Curiously, Teresa and I walked over to the table to see what the evening's refreshment had and it was a very long swirly chocolate cake.  In the shape of a snake.  A chocolate snake.  A fifteen foot foot long chocolate snake.

It was covered in saran wrap and it was accompanied by a man standing by it saying "don't touch".

So after four cups of water, and watching everyone do the Monster Mash, I made a deal with Teresa.  We could stay at the party and hope that we would get a piece of chocolate cake at some point in the evening, perhaps after many others had rushed ahead of us in line, or..... I would be honored to escort her to Denny's for a hot fudge sundae right now.

With smiles on both of our faces, off we went.  That was a very good day.

I married a great cook

It happened.  I married a great cook.  My husband cooked his way through college at a variety of Italian restaurants and as a result, he is fearless in the kitchen.  When I say fearless in the kitchen, it means that he will find a great on-line recipe and then substitute more healthy combinations into something unique.  I am showing you his chocolate fettuccini dish in today's post.
Fearless also means that he will use any kitchen tool that we have, or that he can imagine using to obtain the best result.  All I have to do is show up and take pictures, grab the printed recipe he was using and put it in our family recipe book.  That way, we can have it again.

When we have family dinners, sometimes he has been known to receive standing ovation with applause. 

What does this have to do with dealing with factor V deficiency?  It's all about finding ways to deliberately celebrate the good days.  Take pictures and learn to enjoy what comes from a good day. The day we had this dish was a very good day.