When I was a teenager, I snuck some books out of my grandmother’s house. They were old and musty, kept in a damp basement cupboard and I knew if they stayed much longer, they would be ruined. My grandmother was clearly not interested in reading them, so I took them. It was just as well. After she died, my uncles took anything that was not jewelry and put it on the steps of their family factories (yes). My mom was able to salvage some furniture and dishes, but if I had not ventured into bold faced thievery, they would have been lost to me.
Anyway, one book was “A Little Treasury of Modern Poetry.” I read it because it was old and because it was my grandmothers, NOT because I had any interest in poetry. However, there was a quote in the introduction that, for the first time, helped me to understand and appreciate poetry. It is by W.H. Auden who wrote, “When we read Kipling, we can usually say, ‘that is just how I feel.’ Of course, there is nothing wrong with that, but when we read a great poet, we can say, ‘I never realized before, what I felt.’” It’s one of those quotes that has stayed with me after reading it just once and changed the way I approached the things I read (which from that point on included poetry).
So last year, just after we got back from adopting Ruslan, I reconnected with some old friends who were with me in Ukraine over twenty years ago. Someday, I’ll write about that first trip to Ukraine. It was so much fun. There were eight of us. We were all young and single, just out of college with no responsibilities and hardly a care in the world. It was a blast. Every day was full of things to laugh about. Anyway, one of my fond memories of that first trip is jumping off a bridge in Keiv with my friend Colin. While we were there for the adoption in 2010, I found the very same bridge and took a few pictures. I wrote a little bit about this in the November 7, 2010 post. When we got back to the states, I sent the pictures to Colin, just to say, “Hi.” It was so great to hear from him again! We don’t really keep in touch, but he’s one of those friends that I want to keep track of, just so I can glance over, make sure all is well and enjoy thinking of him thriving. Unfortunately, he is not thriving. His wife has some form of recurring cancer and when I got in touch with him, they were in the middle of another recurrence.
This is so wrong. His wife is young, beautiful and witty and they had been dealing with this cancer for years. I started following their Caring Bridge posts and was relieved when they stopped posting over the summer. In this case, no news was good news. All through the fall and winter I’d check in occasionally, just to make sure that all was well. When I saw they hadn’t posted, I knew that she was still in remission, healing, and I could think of them together, in love and enjoying life.
Well, a few days ago, they posted. She was having stomach pains over the weekend and they went in for testing on Monday. They posted on Tuesday that the cancer had returned and on Thursday morning, they had a CT scan to assess the damage. There is a place on Caring Bridge where you can sign their “guestbook” and they wrote about how much they appreciated hearing from their friends. So, I read back over the posts. Most of them were sweet, sincere, encouraging posts full of Bible verses, prayers and love for Colin and his wife. Like a Kipling poem, they expressed just what I was feeling. Then I came across a post from one of their best friends, who simply wrote, “SHIT!! CANCER STINKS! GOD DAMN FUCKING DISEASE!” which just sent me into a tail spin. I didn’t realize it, but THAT is what I’m really thinking. THAT is the post that hit the nail on the head. I’m not sure it was all that encouraging, but it was definitely loving and definitely accurate. I feel so furious and so helpless, knowing that people I love are in pain and I can do exactly nothing. I HATE this. I HATE it. Of course I pray for them and of course I know that God loves us all and hurts with us and answers our prayers, but sometimes, it’s just not all that encouraging to pray to a silent God who seems to be playing Whack-a-Mole with my friends lives.
There was nothing to do but revert to my favorite coping mechanisms: wandering through the house in a bewildered daze and then running away. I am usually crying about my friend Maryann (lost her husband in May), so it’s not like crying and running is anything new here. I suspect everyone within a six mile radius of my house must know me as the “wailing runner.” Just this past weekend, Maryann took off her wedding ring. She decided to have a ceremony, so she got some friends together and read the poem that Bruce read to her when they got engaged. “How do I love thee? Let me count the ways” by Elizabeth Barrett Browning. If you know the poem, you know the last line, “I love thee with the breath, smiles, tears, of all my life! --- and, if God choose, I shall but love thee better after death.” Bruce had read this to her when he gave her the ring, so, she read it again now that she was taking the ring off. Then she put it in a music box that plays “their song” to keep it safe. She bought herself another ring, to wear on a different finger. I agreed with her decision to take off the ring because she said she was ready and because I know she is more at peace, having taken that next step. As for me, I just felt it was one more step away from where I wanted life to be.
That was over the weekend. Tuesday Colin posted that the cancer had returned. Wednesday was the 21st again, which makes ten months since Bruce died. Thursday morning, Colin posted that his wife was going in for more testing. After my run, I checked back on Caring Bridge. Colin had posted the testing results from a CT scan. The cancer has spread. It is inoperable and if the emergency chemo doesn’t work, his wife may only have weeks to live.
That was over the weekend. Tuesday Colin posted that the cancer had returned. Wednesday was the 21st again, which makes ten months since Bruce died. Thursday morning, Colin posted that his wife was going in for more testing. After my run, I checked back on Caring Bridge. Colin had posted the testing results from a CT scan. The cancer has spread. It is inoperable and if the emergency chemo doesn’t work, his wife may only have weeks to live.
There was no time to react. I had to go to get my kids. Thursday afternoons, Ruslan and Will have horse therapy, Reilly has eye therapy and that evening was “Pirate Night” at school. You will be happy to know that every school that gets Federal Title One grant money for reading is required to budget a few “reading nights” for their special needs kids and their families. Thanks to your tax dollars, everyone is invited! They usually have a story, related activities, a free book for each kid and dinner for everyone. …Thanks for the pizza.
The older boys stayed home and Bill and I took the younger kids. On this night, it was Reilly, Sharon, Ruslan and Will. Just my luck, the teachers had planned a pirate treasure hunt. They split the kids into small groups and gave them all a treasure map. As soon as they read the first clue, all the kids ran out of the cafeteria and toward the gym. Bill took Sharon and Will while Reilly and I planned to stay with Ruslan. Right away, I could see that we were in trouble. Ruslan was in his walker. By the time the other kids made it to the gym and were looking for their second clue, Ruslan was not even half way there and feeling horribly left out. He didn’t cry though. He’s been getting much braver and more self-reliant lately and he actually told me, “I want to walk ‘by himself,’ like the other kids.” I said, “Great Job!” and praised him up and down, but there was no way he was going to be able to keep up. I told him to, “Keep Going!” and then ran off to try to find something, anything, to get him mobile. His wheel chair was locked in his classroom, so we were running through the halls, trying every door knob and looking for some sort of an office chair with wheels. I finally found one in the copy room, raced it back toward the gym and ran into our group of kids racing toward the library. By this time, Ruslan was realizing that he was tragically behind and was ready for the ride. We put him in the office chair and for the rest of the treasure hunt, Reilly wheeled him around with the other kids so he was able to hear the clues and get the treasure. It was really cute, but it was also really tragic.
When we are at home, there is so much going on that I don’t always notice Ruslan’s disability. The space is small, so Ruslan is usually right in with the crowd. He can also use his walker or sort of “cruise” along the furniture, to get from place to place. However, seeing him in a crowd, trying to keep up and comparing him with all the able-bodied kids his age can just hit me really hard sometimes. He is SO disabled. It’s not just that he can’t walk. His torso is really weak. He couldn’t even keep himself in the chair. We had to put him in it facing backwards, so he could hold the chair-back to keep himself up with his arms. Plus, his arms are twisted. His thumbs point down and he can’t get his palms together, so he had to hold the chair pretty awkwardly. It’s not pretty. To make matters worse, Ruslan is actually becoming more pleasant. We have REALLY cracked down on his discipline, so he is no longer whining and complaining all the time. He’s actually been trying to contribute, taking some pride in the fact that he can be helpful, and even showing empathy for others. In short, he’s easier to be around, which makes him easier to love.
With everything from the week, Maryann’s ring, Colin’s wife, my child gleefully sitting in the “wheel” chair and surrounded by so many other able bodied kiddos, I realized I was about to lose it. I found a storage closet by the cafeteria and had quick cry in between clues to the art room and the backstage of the theater. I’m afraid I was in a foul mood. Fear not. I am not going to lose my faith. I don’t want to become a Thoreau quoting Agnostic or a meditating Buddhist. I’ve memorized plenty of Bible verses and I get it that when Peter asked, “Lord, where else would we go?” he knew there was no where else to find answers that lead to Real Life. It’s not that the Bible is inadequate, it’s just that it’s futuristic. I get the promise of heaven, but I happen to be living here on earth, HERE…NOW.
I made it out in time to help all the kids choose their free book. Then there was dinner. We got pizza and drinks for all the kids, got Ruslan into his special Tripp Trapp chair, strapped in his torso so he didn’t lean over, strapped in his feet so he can use them to sit up “straight,” wheeled him to the table, then we all sat down. Ruslan LOVES to pray at dinner time, so he reminded us that we needed to pray. As I wrote, Ruslan’s arms are twisted, so it takes him some effort to get his palms together to pray, he has to hold them up about face level, but he can do it. We all bowed our heads and put our hands together while Ruslan prayed over our dinner. This is what he prayed; he said, “Thank you God, for this food and thank You that someday my body will be perfect in heaven and thank You that someday I’ll be able to walk in heaven. In Jesus name, Amen.” Then he looked up at me, smiling from ear to ear, as though all the world was full of goodness and his only job was to sit back and try to keep track of all God’s blessings.
I smiled back at Ruslan and told him that he did a great job praying. He nodded and smiled at me again. Then he took up the pizza in both of his twisted little hands and took a bite. I made sure all the kids had their drinks open and told them I was going to get more napkins.
Then, I went back to the closet.