Tonight's picture was taken in October of 2006. Mattie was four and a half years old. Peter and I took Mattie to the Monocacy Valley of Maryland to ride on the Walkersville Southern Railroad. This track was built in 1872 and the trains were vintage 1920's passenger cars (www.wsrr.org/). Mattie had a wonderful time seeing the Maryland countryside and riding on the train. He ran between the train cars, and at one point Peter and Mattie were riding outdoors, in the cold. It is hard to believe looking at the face in this picture, that Mattie developed cancer and died. To me, he looks like the picture of health! Weekends with Mattie were busy, as I always tried to find fun and interesting things for us to do together. Peter and I had many interests, and we always tried to expose Mattie to many different things in order to stimulate his curiosity and excitement to learn and see more. This strategy seemed to work for Mattie.
Quote of the day: Danny, our only child, passed away at the age of twelve. His death was unexpected, and the pain almost unbearable. Our pastor told us that yellow is the color of life. What then could be more fitting than yellow roses? To ensure these symbols of life for years to come, I bought a rose bush for my wife. After all, she was still Danny's mom and needed more than ever to be reminded of that. I planted the bush on Mother's Day. On the day before Father's Day, the roses bloomed - three of them, to be exact. They were arranged in size order, just as our family had been in life. When I bought the bush, there was no way to know that there were to be only three roses. I have no doubt this was a sign from Danny. He wanted us to know that he still lives, and that there are still three roses. ~ John Carlsen
For all of you who contacted us on Facebook today and congratulated us on our one year anniversary of the incorporation of The Mattie Miracle Cancer Foundation, we THANK YOU! On November 2, 2009, The Mattie Miracle Cancer Foundation was born, almost two months after Mattie's death. Within one year's time, the Foundation has donated hundreds of toys to Georgetown University Hospital, we hosted a first annual pediatric cancer walk (with 400 people in attendance), we brought Sean Swarner (first cancer survivor to climb Mt. Everest) to the Georgetown University Hospital to meet the children and their families (both outpatient and inpatient), we participated in CureSearch's Reach the Day lobbying event for pediatric cancer as well as participated in Hyundai's Hope on Wheels Program and Reception announcing September as “Childhood Cancer Awareness Month.” Also within one year's time, we established a website, a Facebook page, and electronic newsletters to our support network! For all of you who make the Foundation possible and for helping us have a solid first year, THANK YOU!!!!!
It is hard to believe that today marks the 60th week of Mattie's death. As more time passes and as this weekly count increases, I am not sure what I am expecting. Am I expecting life to get easier? For this loss to mean less to me, or to feel less pain? Maybe I am expecting that I will wake up one day and feel completely different, different about life, the future, as well as our past! All I know is that none of these things are happening now or most likely any time soon.
I ventured to one of my favorite stores today, AC Moore, and started getting supplies for a project I am working on. As I entered the store, I was HIT with Christmas music. Not to mention rows upon rows of Christmas items. Honestly! It is the beginning of November! All that this holiday stimulation proceeded to do was to make me further depressed. Christmas and big holidays like this, can certainly be a happy and joyful time, but they can also be emotionally laden for so many. They can serve as a reminder of what is missing in your life and the degree of pain and unhappiness you feel. There were many young children with their moms today in the store, and they were aglow over seeing the Christmas aisles. Overall it made for a very overwhelming sight.
Later in the day, I visited Mary, Ann's mom. Visiting Mary and her facility are always a reality check for me. Naturally Mary is an older adult, however, in this care facility there are several young people who are patients. On occasion, I see one young girl, maybe in her 20's, who is visited by her mom. The twenty year old is paralyzed and in a wheelchair, and can't really talk. Yet despite her condition, her mom visits, talks to her, and fills her in on the family happenings. My point to telling you this is despite my saddened state, and moments of depression, I am VERY well aware of the fact that there is a lot of pain and suffering going on around me. I do not corner the market on this, nor do I think I do. Regardless of how I am feeling personally, I am never too absorbed however to take in what is happening with those around me. Which leads me to my next point, and I apologize already for what may appear to be a rant!
At Mary's facility, there is a woman who is in her 90's living there. This woman is mobile and can do many of the activities of daily living that so many others much younger than her are unable to do. She can somewhat dress and feed herself for example. However, this woman is severely impaired cognitively. I naturally do not know her diagnosis, but I suspect she has the late stages of Alzheimer's Disease. In the later stages of Alzheimer's you will see a person who is disoriented, has mood and behavior changes, deepening confusion about events, time and place, unfounded suspicions about family, friends and professional caregivers, and more serious memory loss and behavior changes.
While visiting Mary, I could see this woman was very upset. This is not unusual for this woman, she spends a good portion of her days wandering around, crying, and in fear. Perhaps it was the state I came into the facility today, or perhaps what I observed was just WRONG and speaks to the hateful way impaired older adults are treated in this country. As this woman was crying and clearly showing extreme forms of paranoia this afternoon, I tried to rub her arm and comfort her. She was crying and desperately wanted to leave and go home. So I handed her a tissue and continued to listen and reassure her. While I was attempting to talk to her one of the nursing aides observed what I was doing and told me and Ann that what I was doing would only make the situation worse. According to this aide, the best thing to do for this older woman would be to IGNORE her. You heard me correctly, IGNORE her! When I tell you that it took every fiber of my being to bite my tongue and not respond, I am not kidding. It would be contrary to my helping profession to IGNORE someone in need, putting that aside, even if I had NO skills whatsoever, as a human being, ignoring the pain expressed in another human being is NEVER the right thing to do. This woman is NOT in control of her thoughts and behaviors, she isn't purposefully acting this way to seek out attention. She has a disease that is eating away at her mind, and this leaves her frightened, scared, alone, and sad. How ignoring this situation is going to improve her symptoms is beyond my comprehension! IGNORING her instead is the easier thing for the staff to do, and by ignoring the problem the problem can therefore not affect one emotionally. I suppose that is a coping mechanism many workers adopt who work in assisted and nursing care facilities. So the two main ways the staff works with this woman is either to remove her from her room and have her sit in the hallway or to ignore her altogether. As I saw her sitting in the hallway by herself today, my heart was breaking. I get the fact that the aides have numerous people they are responsible for, but all I could think of is....... imagine if I were this woman. How on earth would I feel?
This woman at one time was vibrant and productive, just like us. Now because of her disease she is quite impaired. But is it okay, or would we be happy with the fact that in our old age, people around us would want to IGNORE us, because this will remedy our ills? All I know is after seeing this horrible picture today, it made me very upset. So what is the answer to all of this? I am not sure, but clearly (and I don't know when it is going to happen) at some point qualified professionals will have to eventually begin working in our assisted and nursing care facilities. People who are trained to work with the mental health needs of the older adult. I continue to be saddened with my own profession, who turns away from aging issues, as well as death and dying issues. These are natural developmental issues, and in a society which is ultimately greying with the baby boomers getting older, I am not sure what we are waiting for. All I know is if this happens to me when I get older, I hope someone either talks to me and reassures me or just gives me a pill to make me sleep the day away. But ignoring a mentally ill older adult is disrespectful and not a viable option to establishing any quality of life.
In the midst of this visit, I had some time to sit with Mary and chat. She was taking a few cat naps, but between naps, she would open her eyes to see if I was still there. Mary let me know that she is worried about me and thinks of me often, and when she can see I am not doing well, she sensitively expresses that I should go home. Which is what I landed up doing. Seems to me friendship has no age limits, and Mary and I are a good example of this!
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