A Business Outing

Yesterday Lisbeth and I drove to Portland early to fetch a few of her newly printed tee shirts for her Etsy shop. We are trying to get her involved in the various aspects of her business, like running errands such as this. Because of her disabilities, which include chronic physical pain, high anxiety, behavioral disturbances, and uncontrolled seizures, Lisbeth is unable to work a daily job like some folks with special needs are able to do.
When I arrived at Lisbeth's house, her helper informed me that she'd just given Lis a half of a lorazepam because Lis was having strong seizure auras. Lis had her water bottle and PRN meds ready to take with us.

Lis likes to be very warm, so she bundles up and we crank up the heat in the car. Because of her TBI, she can't tolerate layers of sound. No radio, Mom. Can't hear the noise!

It's about a 40 minute drive to State of Mind, the print shop that silkscreens Lisbeth's shirts for us. I like that a place called State of Mind prints Lisbeth's brains (how Lis refers to her snowflake/mandalas...)

Lisbeth has been here once before, but it is not left in her brain (Lis-ism). Today it feels brand new and strange. We take it slow...

A nice woman named Sharon Putnam greets us and gives us the finished shirts. She is minding the shop for her son, Paul Mitchell, who does all his silkscreening by hand. Sharon brings out Lisbeth's designs printed on mylar. These are the images that get shot to the screens. We spend some time making sure that we have the correct title on each mandala. Lisbeth enjoys seeing her snowflakes all black. She calls this the scary way of it and remarks that her friend Charles would like them (Charles was a fellow student in the Special Ed department with Lisbeth at Brunswick High School. He wore tee shirts with skulls and scary stuff on them, and his favorite color was black). Lis wonders why there aren't more of her designs here - I assure her that we will soon be making new screens with more of her wonderful designs!

Sharon lets me sneak a peek in the back where the printing happens. I try to get Lisbeth to come with me, but she does not want to. She is getting uncomfortable now and wants to leave. We've made plans to get lunch out and she is ready to roll.

The drive and the lorazepam take their toll.

Lunch revives Lis somewhat...

Business partners.

Back home it's time for a nap. Milkweed tucks Lisbeth in on her couch.

I kiss Lisbeth and Milkweed and head home to photograph the new shirts in my backyard just in time before snow starts to fly...

Too Funny of It

Sunday morning.

Enjoying the fire and the funny joke.

Lisbeth boarding the van for her ride back home with her helper.

Lisbeth was in good spirits on Sunday morning after her sleepover, and even did a funny joke. And one thing that is always stuck in her brain (Lis-ism) is that she gets her allowance for the week on Sundays! It's great that she is making her own money now with sales from her Etsy shop - we can stop calling her money an allowance, and start calling it a paycheck! More ways of being a very real grown-up!

The Sleep Over

Lisbeth is so eager to sleep over, she arrives dressed in her jammies (she is also wearing her pink polar fleece Little Milkweed jacket that I made for her many moons ago...).

Right away she has aches and pains, some negative perseverating, and an absence seizure (otherwise known as a petite mal seizure, shown here. This involves staring, some drooling, and non-responsiveness, but not a full loss of consciousness as is the case with her tonic clonic, or grand mal seizures).

We work on a fun project while Daddy cooks supper...

Glad of it!

Dad's menu:

Baked potatoes with sour cream, grilled steak, mushrooms and onions, and a green salad. Vanilla ice cream for dessert. All enjoyed under the watchful eye of the new Little Milkweed angel...

As soon as dinner is over (for Lisbeth - it doesn't matter if we are still eating!) it is BEDTIME.

See, Mom and Dad? Need to get the Sweeter Bear, need to take the bedtime medicine now, and put on the cream, and brush the teeth, mmmmmmm hmmmmmmm, and get the water with ice, LOTS of ice, and do the heating pads in the microwave, and rub the back, and read the bedtime story, mmmmmmmmmmm hmmmmmmmmmmmm...

Bedtime Medicine. Four times a day Lisbeth swallows a handful of pills. She takes 4 anti-epileptic meds, and an anti-psychotic: Depakote, Trileptal, Zonegran, Vimpat, and Risperdol. She also routinely takes PRN lorazepam. (Lisbeth has meds in liquid form for times when she is unresponsive and can't take meds orally. There are also times when Lisbeth is too unresponsive to drink and she can't take liquid meds - at these times she is at risk of becoming dehydrated and must go to the ER and be given her meds and fluids intravenously).

Lisbeth can't read, but she loves to be read to. She likes the same stories over and over. This book has a character in it named Lisbeth, so it is a real favorite!

Lisbeth does a good job brushing her teeth. When she is clear, she can do these tasks. When she is postictal and not clear, she needs help with hygiene, and getting dressed and undressed.

A conte portrait that I did of Lisbeth asleep post surgery in 1992 at Boston Children's Hospital.

Lisbeth is 28 years old, but in many ways she is still the 6 year old girl that she was at the time of her traumatic brain injury and the onset of her seizures in 1988. We transitioned Lis to her own home when she was twenty-one, but she still comes and spends the night about once every two weeks, and when she does, she needs the same sort of predictable ritual and routine that a young child requires. Even more so. She needs constant attention. Her moods can turn on a dime. Often she will not sleep through the night. Sleepovers are a challenge, however, we still do them often, because even with all her ups and downs, Lisbeth delights in being back home with us. And the wonderful thing is, she is always ready to return to her home the next morning, and impatiently waits for her helper to come and pick her up! In this way, she is a very real grown up. THIS way!

Milkweed Angel

Little Milkweed Angel is available in Lisbeth's Etsy shop.

Soulmates.
Mmmmmmm, hmmmmmmmm.

Lisbeth slept over this past weekend. I will have to do a separate post about The Sleepover. I'm certain that it will require more than one post, but for now, let's just talk a bit about last Saturday night. Lis and I designed a special ornament together based on one of her drawings of her cat, Little Milkweed. As I've said before, Milkweed is Lisbeth's world. They have a very tight bond (in fact, they look so much alike, I'm convinced that if Lisbeth Miller was a cat, she would look just like Little Milkweed...). Lisbeth needs constant attention, so while Garry was busy fixing our dinner, I suggested that we make a little angel ornament out of snow white felt. She approved. Lis picked out just the right shades of pink and blue for Milkweed's nose and eyes, and supervised the process from a comfy chair.

We made this ornament to add to a shrine for Milkweed that we are building on a wall in Lisbeth's living room. Lis's house manager, Holly Spence, and IA's resident psychologist, JC Edelberg and I have been meeting to brainstorm about ways to help reduce Lisbeth's anxiety. One idea we have is to teach Lisbeth some very simple deep breathing and muscle relaxation, and to help her focus on something soothing while doing these exercises. Lisbeth has difficulty with abstract thinking, and to attempt to teach her specific religious doctrine - the sort of thing that can bring comfort to some individuals - simply does not work for her. Lisbeth knows what she knows. She knows she loves Milkweed, and Milkweed is there for her unconditionally. So thoughts of Milkweed are always pleasing for Lisbeth. We often talk to her about Milkweed when she is perseverating and needs redirection. Milkweed brings her joy.

So we are building this meditation corner for Lisbeth, with All the Things of Milkweed. Our hope is that it can be a place where Lis can sit daily and look at all the little things that bring about feelings of peace and joy. Lisbeth loves to find matching things (one of her neuro-psych evaluations catagorized Lisbeth as having an associative brain, something that I believe all artists possess) and she will love finding flowers and trinkets that are Milkweed's colors and adding them to her little shrine. Lisbeth's therapist, Stepanie Cimmet, has begun teaching Lisbeth the breathing and relaxation exercises, and has agreed to be taped doing this, so that Lisbeth's staff can learn the technique and do the exercises daily with Lisbeth. We hope that Lisbeth will be able to do these exercises in her meditation corner, and that by practicing daily, she will make gains in reducing her profound anxiety.

Milkweed's Sneeze (Brand New Way of It)

Little Milkweed

Little Milkweed, she sneezed without any sound of it. It was nice. Brand new. Mom and Dad, you need to know about it, and the other guys in the family. My kitty is the older kitty - medium one. Sara would need to hear about it, and Karen would need to, and Holly, and John, too. Eben, his little kids would need to hear about it (it was nice that I gave his little kid the book for the birthday, mmmmmm hmmmmmm). Even Geoff need to know about my little kitty, and Alec Miller need to know, too. That's good that my little kitty didn't do sick way of it. I would need to call Mom and Dad about this. It's really better way of sneezing. Mmmmmmmm hmmmmmmm. Would need to make a movie all about this. Mom and Dad can be happy about this! I know the guys in the family can love this! The helpers can love this, too! I'm so happy of it!!

All by Lisbeth

Sad and Glad (of It)

Brain Star Snowflake/Mandala by Lisbeth

Driving home from my visit with Lisbeth, my head is filled with the implications of hummingbirds on socks, and my heart is filled with sad, and glad, as it beats time with the windshield wipers clearing away the falling snow...

Hummingbird Sock Surprise

I have been feeding hummingbirds at my home in Woolwich for over 20 years. They are the most delightful little beings. After Lisbeth became ill in 1988, I started having dreams about them. Before then, I'd never given them much thought. The dreams became so insistant that I decided to buy some feeders and hang them on the front of our house. Ever since, the hummingbirds have been returning to our yard each May. I researched hummingbirds and began to make art about them: their hinged wings beat out a figure eight, which represents eternity, and in Native American lore, they symbolize Joy. I realized that hummingbirds showing up in my dreams at the onset of Lisbeth's illness was God's way of telling me that there would be eternal joy in my life even in the midst of great hardship. I still dream of them often, and Lisbeth knows how much I adore them...

Funny Art

Mommy with Hummingbird, by Lisbeth, January, 2010

Daddy by Lisbeth, January, 2010

Lisbeth refers to her therapist as The Talking Doctor. She saw Dr. Geoffrey Evans once a week for 15 years before he retired last April. Her new talking doctor is Stephanie Cimmet of Many Moons Psychotherapy. This is a very important part of Lisbeth's care.

Of Mushrooms and Heros

Lisbeth's new big cuts! Wow! I love these! I'm surprised that she chose this page from a newspaper to cut from! So different for her! So bold and abstract! The work of Robert Indiana comes to mind. Lisbeth told me that these cuts are mushrooms. Yes! See them?? They are in the cutouts and the openings! She went on to say, Like Brother Eben's favorite supper. I must pause here to tell you that Lisbeth prefixes all four of her siblings' names with brother and sister. Very 18th century. We know not why. We are not Amish, or Shakers, nor do we live in some weird religious cult. This is just one more example of Lisbeth's endearing Lis-ism's. And sometimes the prefix includes BIG, as in Big Brother Eben...

Here is Lisbeth in 1987, before she became ill, with Big Brother Andy, left, and Big Brother Eben, right. For the record, these big brothers can do no wrong. They are Lisbeth's heros. She often has dreams in which Big Brother Eben and/or Big Brother Andy come to the rescue - killing snakes, wrestling bears, or chasing off bad guys...

But back now to Brother Eben's Favorite Supper. This is a family joke, because this is actually not Eben's favorite supper, but it is stuck in Lisbeth's brain (a Lis-ism) that this IS INDEED Eben's favorite supper. Yes! Yes! You do know, it, Mom! It's left in my brain!

We do not argue this point.

So, without further ado, here's the recipe for (drumroll.....)

Brother Eben's Favorite Supper!

In a large skillet, brown 1 lb of ground beef with one small chopped onion. Pour off grease. Add to skillet 1 can cream of mushroom soup, 1 soupcan of milk, 1 8 oz pkg of cream cheese, 1 can of corn, and S&P to taste. Simmer gently for 15 minutes. Serve over egg noodles.

Big Brother Eben today. He is a history professor at SMCC in South Portland, is married to a wonderful woman named Tracey, and they have two sweet children, Cecilia and Calvin.