Thursday, May 13, 2010

Unbroken Circle

I found this old photo of me taken by my father in the fall of 1969, when I was fifteen. I am in my basement in Warwick, RI, working on a mandala for my 10th grade art class. I think it's the only one I ever designed. Both of my daughters, Kaitlyn and Lisbeth, make mandalas now. Ah, the circle of Life. What goes around, comes around...

Monday, May 10, 2010

Team Work

Holly Spence, Lisbeth's house manager, checks Lisbeth's schedule, while Heather D'Alessio, one of Lisbeth's helpers, looks at the calendar.
Heather D'Alessio, and Duane Hinds, Lisbeth's case manager from Maine Department of Health and Human Services.
Christina Hinds, Lisbeth's case manager from Independence Association, makes notes about Lisbeth's goal list. Milkweed oversees the meeting...
Lisbeth and her Dad. Lisbeth looks forward to her quarterly meetings, and gives her input.
Quarterly meeting is over. Now it is time to go to see The Meeting Doctor (Lis-ism for therapist).

This morning we had Lisbeth's quarterly meeting. Representatives from Independence Association and Maine Department of Health and Human Services attend these meetings along with Lisbeth, Garry and I. We check in about how things are going for Lis at her house, we share our ideas and concerns, and set goals. We are currently working on creating more of a routine for Lisbeth, which is always a challenge with the ups and downs caused by her uncontrolled seizures. But we are looking at things that she already loves to do and turning them into planned weekly activities. Lis loves to bake, so she will be baking items one day a week and delivering them to the IA office for the help there to enjoy. There are weekly potlucks for IA residents, and Lis will be making a salad one day a week for these events. We are re-exploring the possibility of a small part-time job in the community - perhaps one hour a week. Lisbeth actually attended an IA dance last Friday! This is a big step - she has alot of social anxiety. There are monthly dances, and it would be great if she could attend more of them. She loves to buy new clothes, so a motivating factor would be to shop for a new outfit each month to wear to the dances (and she can afford it with her sales in her Etsy shop! :^) Lisbeth is in need of more socialization, yet it is very difficult to get her to do things because of her anxiety. We have to introduce things gradually. And nothing is ever set in cement. Go with the flow and know when to let go. If it works on some days, terrific. If it doesn't, that's OK, too. Tomorrow is always another day.

Sunday, May 9, 2010

Happy Mother's Day!

An old friend of mine sent me this today ~ it's Lisbeth's birth announcement, hand drawn and colored by me, many moons ago. My friend was cleaning out her flooded basement and found this in a box of old letters. What a nice surprise! Happy Mother's Day!

Wednesday, May 5, 2010

Mother's Day Specials!!!

Hot off the ironing board:

Now available for purchase over at the Etsy shop!
It's not too late to shop for Mother's Day!

Today and tomorrow I will ship priority and cover the extra cost!
Mother's Day Special!!!
Buy ANY two items and get 20% off ANY third item!

Make a purchase before Mother's Day, and I will include a FREE Mandala Art Card with your purchase! Just leave me a comment when you check out telling me that you've come by way of this blog, and which card you'd prefer. There are six beauties to choose from!
So c'mon over to Brainstorm Studio and pick out something extra special for the Mom(s) in your life!

Tuesday, May 4, 2010

Bacon Portrait

Just as Lisbeth sees all sorts of figures and animals in her cut paper designs, she finds these things in other places, too. You've read about Jesus in the tortilla. Well, this past weekend we had a sleepover with Lisbeth and our grandchildren, and while we were eating breakfast, Lisbeth discovered a portrait of her brother Andy in her bacon! This was cause for much delight. She's a funny girl...

Monday, May 3, 2010

The Kid Hospital, Part III

Second surgery over. Electrodes removed.

A fighter.

A teacher.

A Little Buddha in Saffron Robe and Bunny Slippers.

The ride back home to Maine.

An immediate trip to the shore.

Clowning with Brother Alec, who played the part of a girl in a skit in the Woolwich Central School talent show that spring. Hence, the wig...

Well, I said I would post more pictures tomorrow, and that was several days ago. Truth be told, it is particularly difficult for me to tell this part of Lisbeth's story. Fifteen percent of people with seizure disorders have intractable seizures - seizures that are not controlled with medication. Lisbeth is in this unfortunate percentage. Surgery is one of the only alternatives for these folks.
The invasive monitoring took place in 1992, and from the onset of her illness in 1988, Lisbeth had been experiencing 12-20 tonic clonic seizures a month, in clusters that would render her non-verbal and perseverative for days. She spent days post seizure clapping and snapping and wandering around the house, spaced out, eating little. She was undernourished and sickly from all the seizures and long postictal periods. Lis had episodes of postictal psychosis, when she would wake in the night after having a seizure, then scream and tear off her clothing. She ran around frantically, bumping into walls, yelling, Mommy! Mom!! Daddy! and looked at us with eyes wild, and blank. Even though we were right in front of her trying to comfort her, there was no recognition. We had to physically restrain her. These were long and torturous nights - the episodes lasted for hours. Thankfully Lisbeth had no recollection of these times, they were like black holes in her memory. But during her handful of clear days, as she got closer to her next seizure cycle, she frequently had episodes of rage behavior - rages so extreme that we would have to call the ambulance, and have her transported to the hospital, where the doctors had difficulty finding the right mix of drugs to sedate her. These rages were neurological events, out of her control, caused by low grade seizure activity in her left temporal lobe, the part of the brain that rules behavior.
We had such high hopes that surgery would be Lisbeth's cure, and that she would be seizure free. Sadly, the invasive monitoring revealed that Lisbeth has more than one seizure focus - we knew about the lesion in her left temporal lobe from her previous EEGs. The EEG from the deep monitoring showed another focus in the back of the right side of her brain. This eliminated Lisbeth as a candidate for surgery, because she had to have one healthy hemisphere to compensate having tissue cut out of the other side of her brain. When the neurology team came into Lisbeth's hospital room with the final printouts and spread them out on the table, I saw it before they said it. I was devastated, and I began to cry. One of the doctors looked at me with surprise, and said a bit judgmentally, "It's not the end of the world, you know." I had to excuse myself. I found a "quiet room" and sobbed. No, it was not the end of the world, but my heart was broken. Years later I saw a documentary on TV about a Russian family that came to the US for their daughter's open heart surgery. The women in this family chanted, cried, moaned, and prayed aloud in the waiting room all through the hours that the girl was in surgery. My God. If only I could have done this.
People tell me that I am strong. And, yes, I now know that I am, but perhaps not in the ways that you think. I held alot in at this time. I had not dealt with my grief about Lisbeth's illness, and I imploded with debilitating panic attacks. I became agoraphobic. Finding out that there was no cure for Lisbeth's condition retraumatized my family. It equaled the onset of her illness in terms of emotional pain and confusion, yet it was a turning point. Issues that were kept at bay with what I now view as a naive hope, came boiling and bursting to the surface. My husband's depression, my anxiety disorder. Our son Andy was fifteen that spring - a tough age under normal circumstances - and this was an extremely challenging time for him. He reeled and rebelled, he began to drink and do drugs. He dropped out of school. He was the bell ringer, pealing out our collective grief and rage. And then Lisbeth began to have pseudoseizures in addition to her clinical seizures. We sought family counseling at this time, and Garry and I sought individual help as well, embarking in earnest on an excruciating but necessary course of grieving, acceptance, and finally, healing. As the title of this blog states, it's not bad thing. Lisbeth and her illness have taught us much...