Please keep the signatures coming! We thank you for signing Mattie's LIVESTRONG dedication page! http://www.livestrongaction.org/node/20612
Quote of the day: “The smallest act of kindness is worth more than the grandest intention.” ~ Oscar Wilde
Peter stayed with Mattie last night. Peter gives me a break from this 24/7 routine on the weekends. Mattie needs supervision at night as long as he is connected to an IV, which may be a while until we can get his electrolytes stabilized. Peter tells me Mattie had another late night. While Peter was working with Mattie, I was reading a couple of articles and working on a Powerpoint presentation for a conference I am attending in DC next week. I managed to stay up until 2am, but at that point, I couldn't keep my eyes open another minute. Sleep for me though is no longer peaceful, I suppose it is the aftermath of living in a PICU, but by 7am, I was jolted awake. Instead of going back to sleep, I decided to take this quiet moment in the house, when Mattie wasn't up, to continue working on this presentation format.
When Mattie woke up today, he was very focused on completing the Taj Mahal. Having Peter home with him today made Mattie very happy, and when I left the house they were building the Lego structure, and when I returned several hours later, they were still at it. That may sound cute, but if you have ever sat on the floor for hours straight, staring at a Lego instruction booklet, then you know this is actually painful. It is tiring physically and mentally, especially the way Mattie builds. Without breaks! Fortunately Peter is a good sport about all of this! While I was out today, Peter and Mattie completed the construction of a second fountain for me (this is actually a project they started last July before Mattie was diagnosed). So now I have two Mattie fountains, and hearing the sound of water has become very therapeutic for us.
While Peter and Mattie were having a busy day together, I went to visit Ann's parents. I have the opportunity to do this on the weekends thanks to Peter. Before I visited with them, I picked up some things I thought they would like, including three large sunflowers. I don't think it is possible to look at a sunflower without smiling. Or at least that was my hope. Each time I visit Ann's parents I am quickly reminded just how ineffective, incompetent, and insensitive the care is that is offered to our older adults in our Country's assisted living and nursing care facilities (certainly there are quality providers, but they are FEW and far between). I remember having these same feelings of disgust when visiting my Grandmother (who was a stroke survivor), who lived her last year of her life in a nursing care facility. Visiting one of these facilities is like entering the land that time forgot, because it is within these facilities that you rarely see visitors, smiling faces, or basically signs of life. It is almost like these settings are designed to depress and suck the life out of you, as you bide your time until God calls you home. Why must it be this way? The simple fact is it shouldn't be! Filling the halls of these facilities were once vibrant and active individuals, and sometimes when I visit Ann's parents, I stare at the residents and try to imagine what they looked like and were like when they were younger. Each one of them has a story, but again, these stories are not celebrated, instead I believe these facilities inspire and reward dullness, complacency, and in a way deaden the human spirit. With that said, these facilities are a business, and they know that their residents' families need them and their services, and because there is a need (and there will continue to be a need based on our population's demographics), there is absolutely NO incentive to change the status quo. None the less, I can't help but wonder why such care can't be provided in a compassionate and humane way? If you think I am exaggerating, then I would be happy to share some stories and observations with you. But when an older adult feels intimated to make a request from a dining room employee, then you have to wonder should this individual be working and serving people? The answer is a resounding NO!!! There are times I visit Mary and Sully, and I want to shake some of the people working in the facility. Don't they get it? This is their job, and at the end of the day they get to go home. Unlike the residents they work with. These employees are the only connection to the real world that some of these residents ever get. That alone is a sad commentary. Prior to Mattie's illness, my area of clinical and research experience was gerontological counseling, particularly addressing the needs of caregivers of older adults. After this year of caring for Mattie though, I developed insights into caregiving that I would never have imagined from my readings or interacting with clients. When you spend some time in nursing care facilities, you can't help but think about your own mortality, or what the meaning of life is? In so many ways we all need a reality check. We (meaning Americans), work so hard, vacation very little, don't have time to just be, or to eat family meals together and so forth, and what for? In the end we do not know what life has in store for us and we can't assume we will have a lifetime to do all the things we envision. I think the worst thing would be to land up in a nursing facility and feel that you haven't lived your life, that life did not meet your expectations, and instead of enjoying time with others, you spent it misdirected thinking you had the future to catch up on relationships and the simpler aspects of life. Spending large amounts of time in a hospital this year, has really caused me to pause. It has rocked my world and forced me in a way to see things clearer. I don't wish this vision test on any of you, but I am hoping that through my daily experiences you can capture something which I wish I learned years ago.
While visiting Ann's parents, they always ask me about Mattie. They know that my mom had a minor surgery this week, and they are very concerned about her. They wanted to know when my parents were coming back to visit. I told them they would return soon, but keeping up with our pace is not only difficult, but very stressful. They completely understood that, having experienced it with their son. Ann's mother then turned to me and asked me how do I do it? She acknowledged that I must be tired and at times want to quit. Certainly, but as we both know, giving up on your child is not an option.
When I returned home, Mattie was thrilled to show off his Taj Mahal to me. This structure has over 5922 Lego pieces. I included some pictures so you could appreciate its design. Tomorrow we will be searching on-line for information about the Taj Mahal. I want Mattie to know something about the creation he built.
Left: Mattie took a close up picture of one of the minarets!
Right: Mattie and the Taj Mahal.
Left: The full view of the Taj Mahal! It was a labor of love, but what you need to understand is that my entire living room is turning into a Lego display center!
We want to thank our neighbor, JP, for bringing over Mattie's favorite pasta and pizza tonight. Mattie enjoyed it and of course seeing JJ (our resident Jack Russell Terrier)! Peter and I had a nice dinner outside on our deck tonight, listening to the fountains. I am beginning to cook some things again, which is my attempt at trying to provide some sort of normalcy in our lives on the weekends. Emphasis on attempt!
I would like to end tonight's posting with a message from my friend, Charlie, and then I included an interesting link to a NY Times article that Charlie sent me today. Charlie wrote, "I was glad to see that Friday was a better day. It is interesting that none of the medical personnel thought to tell Mattie how he might feel as the medications wore off. They often do this with adults as well. They are so concerned about the placebo effect, that they overlook the power of normalizing the effects the patient might have. I've found the positive results of the latter far outweigh the occasional imaginings that you get with the former. At any rate, now that you have told Mattie about it and as time passes he should have few if any lingering problems from the pain medications. Going to see Ann's parents was a wonderful thing and a great kindness. As you noted, isolation is a terrible thing and it is possible to be as isolated in a crowd as in a cabin on a hillside. It all depends on the relationship to the people you are surrounded by. Human touch is something we all need and crave and unfortunately most of us don't get enough of it due in large part to our cultural norms here in the US. We are so fearful of "wrong touch" that we don't touch at all. Then we pay $70 an hour for someone to come and massage our tight muscles. How wonderful of you to provide the caring touch by massaging Mary's hands; I am sure the memory of that will stay with her for some time. It was nice to hear that Mattie ate his dinner; hopefully as the time from the surgery and chemotherapy recede, his appetite will begin to return to normal."
I am hoping you find this short article of interest. To me this research isn't earth shattering. I have cited other articles in the past about the curative nature of friendships, but after walking through hell this year, my main conclusion is that if I did not have my Team Mattie supporters, the challenges Peter and I face would be multiplied by 100! Thanks for your friendships and continued support!
NY Times Health article: What are friends for? A longer life.
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