Milkweed Love

Little Milkweed

was laying on my lap

long of hour.

That is so cute of her,

you do know...

(Excerpt from a recent phone conversation with Lisbeth...:^)

Not the Right Way of It

A Disgruntled Customer.

We invited Lisbeth and her helper, Katie, to have dinner with us on Saturday night. Garry planned to BBQ a pork loin, and was busy prepping the vegetables to go with it. I asked Lisbeth if she would sit for a portrait while we waited for Dad to finish fixing our supper, and she agreed. She started off with a smile, but soon noticed the unconventional colors I was using to draw her hair...

"Mom, my hair's not green!!!"

(Whoo, boy. Bad idea.)

So we promptly stopped that activity and went to the kitchen to see how Dad was doing. Lisbeth did not like the sounds of the menu, and complained openly. "That's the gross food!" She had it in mind that she wanted to go out to eat, so we said, "Lis, it's your choice - you can stay and eat with us, or Katie can take you out. You have your own money to do that if you want to." She opted to go eat The Chinese Food with Katie, and away they went! Garry and I laughed and had a quiet dinner together, enjoying the feeling of being spurned by a grumpy teenager. It felt so normal...

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.

All Happy

Mom and Dad, didn't cry all day today! Lisbeth gleefully reported to my husband Garry and I when we popped in to see her yesterday to deliver a couple of new packs of colored paper.
(A clear, happy day is a rarity for Lisbeth. Constant neurological interference causes her to be on an emotional see-saw. One of Lisbeth's two seizure foci is located in the front left temporal lobe, the area of the brain which rules behavior. Depending on where Lisbeth is in her seizure cycle, and the amount of "jiggling around" going on in there, she is like a puppet on strings regarding her emotions and behavior).
Lisbeth agreed to demonstrate her paper cutting technique. She starts by placing an overturned plastic plate onto an 8" x 11" piece of paper. (Lis and her helpers have made a nice little paper cutting nook for her to work on her snowflake/mandalas. A little studio corner in her living room. Lis cleaned her pink desk all out to make way for some new supplies, like the pastel and bright colored papers we brought).

This is the plate Lisbeth uses. She has used this 101 Dalmations plate for over 15 years to cut hundreds of snowflake/mandalas. (101 Dalmations Little Puppies Get Stolen, Lis's name for that movie, one of her famous Lis-isms, was one of three favorite movies of hers when she was a young girl: 101 Dalmations, Pee Wee's Big Adventure, and Hook. She watched these films over and over and over. It finally occurred to me one day that all three of these stories have at their core something or someone who is stolen or lost. The puppies are stolen, Pee Wee's bike gets stolen, and in Peter Pan, there are the lost boys. This is poignant considering Lisbeth's loss. She was a healthy, normal little girl up until the traumatic onset of her illness when she was six years old. Like all folks with a TBI, Lisbeth has the experience of a distinct before and after to her life. She remembers being well, and mourns for the life she used to have. This has been a struggle for Lisbeth and the cause of significant depression).

Tracing...

Her favorite cutting shears at the ready...

Cutting the circle. Lisbeth will demonstrate the folding and design cuts in a future post.

All Happy!