Sunday, April 21, 2013

An Update as of 4/20/13

“Look at the sky!” Bob just shouted up the stairs a little while ago, and then came bounding up to sit beside me on the couch as we gazed out the window to the west. There the sky was a luminescent peach against a deep blue backdrop, contrasted against the dark lacy patterns of the leaves of the oak trees. On the water, bright peachy reflections cut by the arrowhead ripples of a last water bird paddling down the lake to find a safe haven for the night. To the southwest, fluffy cotton candy pinks and blues, blending as the sun sank to a lavender, and then purple deepening to the indigo of the night sky.

Our spirits are sustained by beauty, even during trying times.

And beauty there is in abundance this time of the year! This afternoon on the way home from doing some errands, Bob and I decided to take the long way home and drive around the little lake where we make our home. Just this week, the woods have been transformed from naked sticks and trunks, to a splatter painting of the lime green of new leaves. The dogwoods are in bloom and the azaleas are coming on, and it is breathtaking!

We followed the route that we often take on our bikes on a lovely spring day, after Bob has pumped air into tires that had grown soft over the winter, cleaned off the cobwebs, and greased the gears with a bit of oil. The bikes will stay hung and the tires soft this year, as a bike is no place for someone who might have a seizure. Instead we rolled down the windows and drove slowly past the magnificence unfolding in our neighbor’s gardens, drinking in the purples, and pinks, and whites.

This evening we are celebrating two seizure-free days in a row (for a total of 4 in the past 10 days), hopeful that with the recent changes to Bob’s medications that we are once again getting things back under control. This journey is turning out to be longer and more complicated than we had once hoped, but there is still much to be grateful for and we still hold a vision of a full recovery for Bob. Neither of us will ever be quite the same again, but we can imagine that life may be even sweeter as we keep a clearer focus on what is really important.  

I have had three friends who have lost their husbands during the time that Bob has been sick, and my heart aches when I consider the emptiness they now find in the space once filled by a living, breathing, smart, funny, warm-hearted person who they loved. Thich Nhat Hanh, a Buddhist monk, has described a hugging meditation in which we hug a person we love three times. As I remember it, with the first hug we recognize that one day the other person will no longer be with us, but that right now we have this present moment and are grateful. With the second hug, we recognize that one day, we will no longer be on this earth, but that right now we have this present moment and are grateful. And with the third hug, we recognize that one day neither of us will be here, but that right now we share this present moment and we are grateful.  

Who would you like to hug right now?

-Megan
 

Thursday, April 18, 2013

An Award for Megan

As we all know, Megan has been an absolute saint during this entire ordeal. Even though we're still in the midst of this crisis, she continues to find ways to celebrate life and keep everyone in positive spirits. Bob has frequently told us that he contributes much of his healing to Megan standing so lovingly by his side, literally holding his hands throughout the entire process. 

It is with great excitement and joy that I share the following news with you:

Megan was chosen by the College of William and Mary to receive the Thomas Ashley Graves, Jr. Award for Sustained Excellence in Teaching. This is one of the College's highest honors and she will be recognized at graduation this year. She was sent a personal letter of recognition from the President of the University yesterday.

We are immensely proud of Megan and are so grateful for the College's recognition of her continued dedication to her students. As Erika said, "Of course, we know that you are not just an excellent teacher of education, but of life - of resilience, honor, authenticity, respectfulness and love that overflows!" If you want to send along congratulations to Megan, please e-mail me (METschannen@gmail.com) and I can send you her email  or mailing address. It's so wonderful to have something to celebrate during these difficult days and Megan is beyond deserving of praise and celebration!

-Michelle

Sunday, April 14, 2013

An Update as of 4/13/13

We have hit a bit of a rough patch since I last posted to the blog. A few days after that post, Bob began having some seizures spaced a few days apart. And then, as they have before, they began to come more and more frequently. We decided that the pulse of steroids every 6 weeks did not seem to be providing the level of protection that we had hoped so we have now changed to a course of oral steroids three days per week. The plan is to have a very slow taper over the next ten months. We are hoping that today turns out to be our first seizure-free day (so far so good!) and that it will be the beginning of a long string of seizure-free days.

It has been a puzzle from the beginning to know how much immune suppression to do and for how long, and this latest episode has just let us know that we needed to do a little more for a little longer than we had planned. Please continue to keep Bob in your prayers as these next few weeks are important ones.

 -Megan