Wedding, Sunshine, Music - 4-2-09

We have had an uplifting few days, and it’s time to share.

On Friday, Craig’s niece Holly Tolles drove over from Pennsylvania to spend time with Uncle Craig doing impromptu music together. She brought her flute and violin, and Craig used the Native American Rain Stick and various homemade instruments that we’ve put together for him. It was such a joy to hear them playing together.

On Saturday, Nik Tressler came and spent the day having a great time with Craig and to give me a respite day. I went out to John and Laurie Cunningham’s and was blessed with John creating a guided mediation to help me through the upcoming weeks/months. Laurie and I went shopping for stuffed animals as comfort tools, and we had a great time hanging out in Toys R Us hugging them.

On Sunday, Craig’s son Dave and Christina held their Baha’i wedding ceremony at our home. We had a few immediate family and close friends for a lovely and lighthearted celebration. Dave fulfilled on a promise to his wife by singing along with the Beatles' song "When I'm 64". Craig was asked to be the representative on behalf of the Spiritual Assembly of the Baha’is of Cleveland Heights, and he carefully printed his name with his left hand on the certificate. Craig was so happy to have this occasion happen and was moved to tears at the end. His energy was good throughout and even high enough for us to go out to dinner with everyone afterward. When we got home, there were surprise anonymous flowers in the mailbox, including a bunch of my favorites – daffodils.

The morning before the wedding, I was going through the paper and reading to Craig what I thought he’d been interested in hearing. We both ended up moved and in tears with columns from our favorite Plain Dealer columnists. The themes of family, cancer, death, and love between parents and children were very poignant for us that day, especially with the wedding coming up. Here are the links to the columns:

http://www.cleveland.com/brett/blog/index.ssf/2009/03/grandsons_birth_means_its_time.html

http://www.cleveland.com/schultz/blog/index.ssf/2009/03/the_nagging_fear_of_not_being.html

Friends Nahed and Philip Squires from Canada came in Sunday evening and the next morning, so we had fun catching up with them and putting them to work as well! Craig’s daughters Michelle and Leah and granddaughter Karida stayed through the end of Tuesday, so we were full up with love and joy.

One of the highlights of this time with the “girls” was music. Saturday evening Michelle and Karida stopped by before going to stay at Dave’s home for the night, and Karida and Grampa did a half hour jam session with various real and home-made instruments. They had a blast! On Tuesday, we had our first session with the hospice music therapist while “the girls” were all there. Leah and Michelle used our songbooks to sing songs remembered from childhood, Karida led the group in impromptu rhythm and kept redistributing the instruments, we all sang, and just had a relaxing fun time together.

We have finished producing the memorial/memento CD of Craig’s music that has been in progress for weeks. The intent was to have them available at the funeral with a donation box next to it to cover production costs. However, we are already so busy giving them away we may have to order more for the funeral! We are so grateful for the assistance of Craig’s daughter Michelle, neighbor Frank Rodgers, friend Joyce Ashman, and friend/music producer Jon Rezin with all the work to get it together.

Yesterday afternoon, Craig and I took advantage of the warm spring sunshine and drove to a local park that overlooks a beach and Lake Erie. We stayed for about an hour and a half eating Wendy’s chocolate Frosty’s and watching the water, birds, and kite flying. It really took us full circle, as we lived for the first year of our marriage in an apartment that overlooked the lake. We then went out to dinner, where Craig had what he called the “best liver and onions” he’d ever eaten! We had a great waiter who patiently read the menu to Craig, arranged for his meat to be cut up, and served us well. People held the doors open for us and helped to get Craig situated at the table with his wheelchair. Abundant helpfulness. So, it was a date night out for me, too!

On the physical side, Craig’s speech is getting more adventurous to decipher, but I’m doing reasonably well at it. We have stopped the shots that inhibit blood clots from forming and the antibiotic that he’s been on for 18 months. His sleeping pill has stopped as well. We raised the steroid dose way up for the wedding weekend to maximize Craig’s speech and energy. Now, though, he doesn’t want to be taking any more drugs than necessary, so we are ramping the steroids back down to a maintenance dose. They will help to prevent seizures, so he’ll likely keep taking some. Some days he is still steady with walking short distances; other days with fatigue and leg swelling he’s unsteadier. I’m definitely getting more sore muscles with trying to keep him balanced, needing more support on transfers, and more trips up and down the ramp in the wheelchair (instead of walking in and out of the house). I’m still swimming and doing Chi Gung to stay in shape. We have increased the caregiver hours somewhat, but not significantly yet.

Craig had been talking about being committed to dying this week, but when we all started focusing on that, he finally got exasperated on Tuesday and said he wasn’t going to after all. It will happen whenever it happens! He was then a little disconcerted and sad to discover that the angels didn’t show up in his bedroom that night as usual! So, we teased him about their feelings being hurt when he said he didn’t need them after all! People have been starting to give Craig commissions of things to accomplish in the next world on their behalf. He is also getting a bit exasperated with that, saying he needs time to get acclimated there first and see how it all works. He finally said on Tuesday that he at least will need to know where the gas station is before he can go to work!

So, we are openly talking about all that is going on. As usual, I’m doing more talking and Craig doing more listening :-). And, we are in peaceful space together.

Love,

Susanne