Over the course of last weekend we were all still searching for hope. She had an EMG, a few blood draws, and another MRI. She slowly started to become a little more confused which got us very concerned. Turns out her carbon dioxide levels were way above normal. Like, way above. She was sleeping the majority of the time and moving in and out of consciousness. During this time her creative spark was still ablaze! She kept pointing interesting things, like how the different room fixtures looked like a dogs face or a soldier. Even in the hospital room her creative mind couldn't help but see interesting sights. I started to get a little more back stage access to her amazing mind.
By Monday she had very few moments of lucidity. By Tuesday she was sleeping all the time. Her pain was always managed and she was never alone excluding the hours between 9pm and 8am.
On Thursday, May 5th, as the doctors wanted to do more invasive procedures and begin a new treatment to potentially help the underlying issue. It was painfully clear to us that we may have already gone beyond her adamant wishes. On Friday we met with a palliative care team and began the hospice process. She never had to move rooms (which were decorated with her quilts and flowers). The nursing staff which got to know her when she was sparky and sweet, loved her and cried with us through to the end.
She passed yesterday at 5:05. I was there, as were several other family members. We were all with her, touching her in some way and watching her as she gently let go bit by bit. She left so beautifully. As if one moment she became way more interested in something else. Her body that was so used to fighting for breath stopped its urgency. Her breath became relaxed. Its as if we could watch her creative interests move from one world to the next. When she left us we were all in awe. Many tears were shed throughout the week and throughout the day, but at that moment we were purely in awe.
In celebration of her we all opened a can of diet pepsi and toasted to her amazingly beautiful, colorful, honest life.
Thank you all for giving her the medium she deserved. Thank you for seeing her, loving her, and supporting her.
If any of you has something of hers I would be touched if you could take a picture of it, post it to Facebook and tag her. It has been healing to see all of her work touch so many people.
Her funeral will be this Wednesday, May 11 from 4-7 at Faith Lutheran Church on Division Road in Germantown.