Saturday, March 21, 2009

Saturday, March 21, 2009

Quote of the day: "Your sacred space is where you can find yourself again and again." ~ Joseph Campbell

Peter stayed with Mattie last night, so I could get a decent night of sleep. Peter was up every two hours helping Mattie go to the bathroom. Mattie's fluid volume has been increased, so he receives 1000ml of fluid each night. It is a huge bag of fluid, and in all reality whether we are home or in the hospital, when we sleep with Mattie we are up every two hours. None the less the privacy of being at home is a special treat. You do not realize what a luxury privacy is until you don't have it.

Today Mattie and Peter had a boys day together. They went out to Home Depot to buy new sand for Mattie's sandbox and to get some other things. They also went to Target together. When they came home they cleaned out Mattie's sandbox and shoveled out all the old sand, so that Mattie could play in his box with the new sand. Mattie had a glorious time outside and in the sandbox, despite it being cold out. He really wanted this outdoor time, and I am happy Peter could help him get it. Later in the afternoon, Peter helped Mattie reorganize his vast lego collection! Things looked more organized when I got home, but unfortunately, there were unexpected additions on my ceiling. I found several bugs attached to the ceiling! Lovely! Just what I needed. They both love freaking me out.

While the boys were together today, I spent several hours away from the house. A couple of days ago Ann e-mailed a bunch of her friends to alert us to the fact that she and her family were going on vacation. While she is gone she asked if we could stop by to see her parents who live in a retirement/assisted living facility near Ann's house. In addition to everything Ann does for her children, her children's school, and community, not to mention Mattie, she also is a full time caregiver for her parents, and oversees their care. Her parents rely on her and when she goes away it places a real void in their lives. Needless to say when I received Ann's e-mail, I knew I wanted to help. Ann does so much for my family and rarely asks much of those around her, but when she sent this e-mail, I knew no matter what I was going through I was determined to find a way to visit her parents.

I have always loved spending time with older adults. Maybe this is because my maternal grandmother lived with my parents and I when I was growing up, and I learned at an early age that the older generation has so much to offer in terms of knowledge, love, and wisdom. I realize that the literature claims that wisdom doesn't really come with age. But from my perspective research doesn't match my reality. Some how older adults are not in such a mad rush, instead they have the time to reflect, truly observe what is going on around them, and comment on things based on their years of experience. It is an unfortunate reality however that our society doesn't give as much time and attention to the older generation, a generation that spent decades being productive and caring members of our society. A generation that helped to make our country great and as strong as it is. If you doubt the relevance of my statement, then I challenge you to visit any assisted living or nurse home for a reality check. Many of these residents are not as lucky as Ann's parents. Why? Because many of these once vibrant and active individuals are now forgotten by family. Rarely do they get visits or have the ability to be connected with the outside world. In fact when I hear children say it is boring to spend time with older adults, I get very upset. This is a rich opportunity for learning that is missed. If I had my way in the world, I would make volunteering in a nursing home a mandatory experience for every student. Cross generational learning is imperative, and study after study shows the health benefits to both populations. But for older adults, spending time with children helps them engage mentally and physically, and we all know that when we use our minds and body, this has huge benefits for our spirit and emotions.

Sorry for the digression, but caring for older adults is one of my passions, and I devoted my graduate education and clinical experience to this population! When I arrived at the assisted living center today, I signed myself in and was concerned that Ann's parents wouldn't recognize me. They only met me twice, and I certainly did not want to make them uncomfortable. However, to my surprise Ann's mother recognized me from across the room. Ann's parents were participating in a spring party at the center, and there were musicians playing wonderful songs for the residents. So I cut across the musicians, and sat between Ann's parents. Ann's mom grabbed a hold of me and hugged me and then held my hand for the entire musical performance. What you need to understand is that Ann's mom and I share something in common. Ann's mom lost her son to lung cancer, and of course Mattie is dealing with a life threatening illness. Let me tell you there are huge commonalities in our lives despite the fact that we are generations apart. I had a lovely time listening to the music, seeing the other residents, and then helping Ann's mom back to her room. I visited with Ann's parents for several hours, and in that time, I had the opportunity to hear many wonderful stories about their family's life, and Mary (Ann's mom) said to me she can't understand why some people (like ourselves) are forced to deal with so much in our lives. I couldn't agree more. What particularly struck me was how concerned Ann's parents were about Mattie. In fact, they knew about Mattie's scans on thursday as well as the results. Ann's dad told me that Ann visited them early thursday morning because by a certain time she told them she had to leave to come help me at the hospital. Instead of them being upset by her shortened visit, they seemed to really understand the importance for her to be there to help me. This level of care and concern truly touched me. Needless to say, I look forward to visiting them tomorrow and only wish I could visit them next week too. But as you know Mattie returns to the hospital on monday for treatment. Sure I am tired, sure I could have spent the day in bed, but you know what, that would have been a lost opportunity to connect with two lovely older adults. I believe that with every interaction we have with others we have an excellent opportunity to learn about ourselves, and in the end when we help and connect with another human being you can't help but feel good and alive.

After my visit with Ann's parents, I went to visit Tanja. Tanja is a SSSAS mom and is now a friend. Tanja has watched Mattie several times for me and Mattie really relates to her. Tanja invited me over to her home today for tea and cake. It was so special to sit in her enclosed outdoor patio area and enjoy delightful conversation, company, and tasty treats. I had the opportunity to talk with Tanja's husband and lovely daughter, Katharina. In fact, Katharina introduced me to their parakeet. He is simply a beautiful bird, and very social. My mom had a pet parakeet growing up that she always told me about. My mom and Flip (the name of the bird) were inseparable. I would always listen to this story but really couldn't grasp the concept. Then I met Katharina's bird, and I can now see what my mom has been talking about for years. Katharina's bird is like one of the family. He listens to conversation, sits and looks at you, and has something to say in response. Any case, I was introduced to the special world of parakeets today. Before I left, Tanja gave me a wonderful easel for Mattie, in which he will be able to stand to write, draw, and paint. Apparently this was Ann's easel, who gave it to Tanja, and now Tanja is giving it to me. If this easel could talk, it has helped and worked with many children over the years. Thank you Tanja for a lovely afternoon, your hospitality, and for the easel!

When I arrived home tonight, Mattie and Peter were having a great time. So while they were busy, I jumped into doing laundry so that things would be clean before we headed back to the hospital on monday. While I was doing laundry, the phone rang and it was Ann. Ann was at the airport, and ready to board her next flight, but wanted to call to thank me for visiting her parents. It is ironic, I never expected Ann to thank me, instead this is the least I can do to help her. How do you possibly repay a couple who has been there every step of the way to help Mattie recover and have a second chance at life (as most of you know Ann is our team Mattie coordinator and Bob is Mattie's surgeon)? I don't know, I am still working that one through.

We want to thank the Ferris family for a wonderful dinner tonight. We all ate well. Junko has found a restaurant in DC I just love, and I look forward to whatever she brings me from there. I also want to thank the Ferris family for all the heating pads they gave me tonight. I now swear by these products. You may recall that on wednesday night I could bearly move my neck and back from the intense stress I was feeling. Well I went to sleep with one of the heating pads that Junko gave me and then the next morning I could move again. Thank you for enhancing my supply! Mattie loved the gifts as well, especially the bug in an ice cube!

I would like to share a message I received from my friend Charlie. Charlie wrote, “Reading Friday's blog, I realized how much of an impact lack of personal space has on Mattie and everyone else. In the hospital, people are constantly in your space, touching you, moving you, doing things to you that you have little or no control over. You also have no control over the environment, you cannot turn off the noise of the equipment, the voices, the lights, which function 24 hours a day, quite in violation of the normal cycles we all need for our sanity to survive. So it really isn't all that surprising that Mattie decided that the atmosphere of a bowling alley was just too much to deal with right now.I think the project on build your own hospital was quite amazing. I loved Mattie's thoughtful touches to make a very utilitarian environment into one that is welcoming and playful. It certainly would go a long way toward integrating the healing of body-mind-spirit that is so needed but so often overlooked."

I end tonight's blog with a song that we all sang today at the assisted living center. I always loved this song, and think it is very meaningful and special. It gives us all something to think about!
The Glory of Love
http://www.youtube.com/watch?v=wZ2fx4XZwT4