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.