Quote of the day: "When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." ~ Henri Nouwen
Charlie sent me this quote today. In addition to Charlie's daily postings she also sends me daily quotes. I so appreciate her efforts and I just wanted to acknowledge her commitment to us and her contributions. This quote really spoke to me today, especially after the dinner I had on Friday night. This was a dinner in which I felt the art of being listened to and understood, and though it is unsettling that solutions are not necessarily evident to many of our issues, in the end, it is not the solution that makes me feel better. What makes me feel better is knowing I am not alone, and others are willing to walk this horrible journey with me. I can assure you on some days, I would imagine it would be easier for some of you to just walk away. I joke with Ann about this all the time. Because though we are living this nightmare with Mattie, Ann and our Team supporters are right along side of us. Part of me wonders how you all handle the news each day, and yet not become so overwhelmed that you land up wanting to turn off your computer!?
Peter stayed with Mattie last night, so I could get a night of sleep without jumping up and down helping Mattie to the bathroom. Mattie is up at least two to three times a night, since he remains on prescribed IV hydration. However, despite being separated from Mattie last night, I had so much running through my head that I did not fall asleep until 3:30am, and by 6am, I was wide awake. Of course tired though, but rest wasn't happening for me. I also woke up not feeling well, and I am slowly turning a corner now, but feel very wiped out.
Mattie was invited over to his friend, Campbell's house today. We can't thank Christine and James (Campbell's parents) enough for this five hour break. The intention was to celebrate our anniversary which is coming up next week. But after last night's dinner, I gave some serious thought to what Peter and I should do today. When we have free moments which is RARE, there seems to be so much we want to do. Our big goal is to go through 12 months of things stacked around us at home so we can reclaim our space. We have also wanted to tend to our garden boxes (which have been filled with weeds due to months of neglect). Of course it is our anniversary, so technically we could have also dome something special. However, Peter and I are both not in that kind of mood, and decided instead to take on a project together at home. Clearly the digging through stacks of things is a priority, but both of us wanted to spend time outside today. So we decided to buy plants, and then came home and weeded and planted. I am sure that sounds like an absolutely boring way to spend together, but gardening is something Peter and I have always loved to do. We get a lot of enjoyment in being outside and taking in the beauty of plants and flowers. In addition, before Mattie got sick last July, he and Peter hand crafted an outdoor fountain for me. So today, we cleaned it out and got it up and operational. To me there is nothing better than the sight and sound of water. So after giving Ann's question some thought last night, I did find something today that I still enjoy. That is nature, the beauty of flowers, working hard to establish a garden, and the opportunity to work with Peter as a team to put this garden together. So in essence this was our anniversary gift..... time together, and time to talk in an uninterrupted fashion. This is priceless. Before we did all this planting though, we went out to lunch together, which was nice. It is so unusual for us to be able to just sit down in peace and eat, so when it happens, it takes us a while to settle down, but it takes us only seconds to appreciate these moments. I included a picture of part of our garden area, featuring Mattie's fountain in the center!
Peter went to go pick Mattie up at Campbell's house and by that time, I think Mattie was tired. But he had a busy and fun day! He did legos and also worked on some wonderful crafts that he gave Peter and I for our anniversary. Thank you Christine for thinking of this and for helping Mattie gift wrap them. The pictures of Mattie that you included were wonderful, and it reminded me of happier times. I took a picture of the items Mattie created for us. To me, these handmade gifts are so meaningful, and things I will always cherish. Mattie was very proud of his accomplishments and he felt happy that he could celebrate our anniversary in some way.
Left: A trinket box that Mattie made for me, with a picture of himself. In addition, inside the box was a piece of quartz that Mattie wrapped up for me as well.
Right: Mattie created a picture frame for Peter, and the picture of Mattie, I believe was taken during Campbell's last birthday.
When Mattie got home, he felt nauseous. This is something I need to talk to Dr. Synder, Mattie's oncologist, about. This stomach issue doesn't seem to be going away, and everyday I need to give Mattie his IV anti-emetic. I made dinner for us tonight, but Mattie refused to sit outside with us on the deck. Normally I would have caved into his desires, but tonight, I let him sit inside, and Peter and I went to sit outside and have dinner together. It was lovely to be able to sit outside, not to be confined indoors, appreciate our plantings, and hear the sound of Mattie's fountain in the background. As we head into Sunday, Whitney and Lesley (Linda's former Childlife interns) are coming over to spend time with Mattie. So this has been a weekend of breaks for Peter and I. I did not think this was going to make a bit of difference to my mood, and I still have my moments, but I can see these breaks are very necessary. It is also during these breaks that I realize just how physically awful I feel. I know Peter isn't far behind me, because planting today in a way was very taxing for us.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What a difficult day Friday was. To be a full time playmate, caretaker and parent is really exhausting and even more so when dealing with Mattie who is limited in his mobility. When I was reading the blog at first I thought I am sorry that Peter did not get to go to dinner but, I think that it was actually helpful that it worked out that way. Mattie has more strength and more resilience than he wants you to know. He's become used to having you around to help and facilitate everything he needs so naturally he is unwilling to give that up. If Peter had gone with you last night, you would have heard only Mattie's view of the evening which was much more negative and you would have probably felt even more guilty for spending some time away. I am so glad you got to go out with Ann and Karen because even if there are no immediate solutions to be seen, it is helpful to have the issues heard and acknowledged. I am glad to see you trying to let go of the guilt (undeserved but naturally felt) so that you can focus on healing for both yourself and Mattie."