Wednesday, March 28, 2012

Wednesday, March 28, 2012

Tonight's picture was taken in April of 2005. Mattie was three years old and trains were one of his favorite things to play with back then. In fact, he decided to build a track and TAPE it to my floor in order to play and run his electric trains. At first this type of set up throughout our living and dining rooms made me uneasy, but over time, as I suppose happens with all parents, you learn to deal with the things and the chaos all around you, as long as it provides the appropriate stimulation to engage and delight your child.


Quote of the day: Prejudices, it is well known, are most difficult to eradicate from the heart whose soil has never been loosened or fertilized by education; they grow there, firm as weeds among rocks. ~ Charlotte Bronte

Today seemed like an endlessly long day! I began my morning by returning back to the George Washington University, my Alma mater. A doctoral student had reached out to me to learn more about the Foundation and also to ask me questions about how to secure a mental health internship in a hospital in order to work with children who have chronic and life threatening illnesses. There are NOT many graduate students who I have come across in my many years of teaching who are interested in caregiving issues, issues pertaining to older adults, and health related crises. So it was nice to meet this young woman today and to try to help her.

After that meeting, I drove to a bakery in Georgetown called Georgetown Cupcake. Last week I wrote a long email to the bakery explaining who Mattie Miracle is and I asked them to donate cupcakes to an event we were hosting at the Hospital today. The event was an Easter Egg hunt for the inpatient children. The hunt was organized by Girl Scout Troop 3989 and Mattie Miracle. This is the same Girl Scout troop who raised money to purchase and create 100 Build-A-Bears and then distributed them to children at the Hospital in February. Within a day of receiving my email request, Georgetown Cupcake wrote back to me and told me they would donate 24 Easter cupcakes to the event. I know this company is very philanthropic and I also let them know in my letter, that when Mattie celebrated his 7th and last birthday at the Hospital, their bakery donated cupcakes to his party. Their kindness remains with me today, which maybe why I consider them the best cupcake company in town. They not only taste the best to me, but the company's support of various local causes impresses me.

From the bakery, I headed to the Hospital. Parking is SUCH a nightmare at the Hospital, that I literally decided to park in the surrounding neighborhood and walk several blocks. I honestly do not know how I managed navigating that parking lot when Mattie was so sick and in a wheelchair. Because I just don't have the where with all on some days to fight this unnecessary battle now.

Girl Scout Troop 3989, had a half a day of school today. When they arrived at the Hospital, they all sat down and had pizza in the Child Life playroom, and they were having a good time talking and sharing stories with all of us. I noticed a big difference in their comfort level. They seemed much more at ease about visiting the pediatric units today than they did back in February during their first visit. I was impressed with their growth and maturity in just a short period of time, because these units are NOT easy places to visit, nor is it easy to see children so sick.


After lunch, the girls started hiding the 200 plastic eggs they lovingly stuffed over the weekend with candy. In this picture is Katie (in red), who is a Child Life Specialist at Georgetown Hospital who also worked with the Troop in February and Margaret (one of the girl scouts). The eggs were all sorts of colors and patterns and there were even a couple of golden eggs!

This foursome was in charge of hiding eggs in the Child Life playroom. Notice Erin (left) is holding up a golden egg! Erin was also one of the Girl Scouts who helped Peter and I at our registration table ALL day at the Symposium on March 20.

This foursome was in charge of hiding eggs in the parent lounge. They got creative and even taped eggs to the walls as well!

I title this picture.... "Eggs Everywhere!" Katie and I took handfuls of eggs and went out in the hallways of the pediatric units and put eggs on anything that we thought would capture the children's eyes. For safely and cleanliness reasons NO eggs were allowed on the floor.

Once we were ready, the children were invited out. This cutie in the picture with the girl scouts is Meredith. Meredith had such a good time that she landed up helping other children find eggs, and I also saw her trading eggs with a patient's sibling. She got his patterned egg, and he got her YELLOW egg, which he was proud of.

This cutie pictured here is Erica. Erica was a good little hunter. She filled up two bags full of eggs and was getting up on chairs to reach for eggs. She was on a mission! Mattie Miracle provided the kids with bunny ears, butterfly sunglasses, and cupcakes.

Byron was a great sport. He had one bag full of eggs in his hands and his mom was carrying a second bag that he filled up. Byron was so easy going and seemed so happy to just be a part of something today. He captured my heart and my attention.

At the end of the event, I took a picture of the eight girls from Troop 3989 who participated in the Egg Hunt. I find it challenging to take pictures of the hospitalized children during these events. Mainly because I imagine myself in these parent's shoes, and I frankly wouldn't have wanted to be in pictures back then. In addition, in the back of my mind, I also know that for some of them, there isn't much happiness there, and it is painful to smile and look like you are having a good time. However, the Girl Scouts did a phenomenal job, and I just wish this particular group would continue working with us and that we could evolve over time together. They were very good with the young children at the hospital, they were helpful, and truly motivated to make this a memorable day for the children. I appreciated and loved observing this, they give you hope for the future.

After I said goodbye to the girls, I walked back into the HEM/ONC unit and found my friend, Fatou. Fatou and Mattie were at the Hospital fighting cancer at the same time. I got to know her and her mom very well. In fact, some of my faithful blog readers may recall that I helped Fatou's mom out several times and called patient advocacy on her behalf because of how she was being treated on the unit. Fatou's mom has never forgotten my help. When I knew Fatou, she was only a baby. Now almost three years later, she has become a beautiful toddler. Fatou has been through a lot in her short life, and back in 2008 when I first met her, she was on life support for several days and none of us thought she was going to make it. But she did! She is a fighter. As I was snapping a picture of Fatou, a Child Life intern walked through the door, and with that, Fatou turned her head and greeted the intern with a big smile on her face. I remember those moments well. When trapped in a hospital, a child can get bored with his/her parent, and Child Life provides the necessary diversions to keep everyone in the family sane. It was a special Easter treat to see Fatou today!

While on the floor, I saw Mattie's nurses such as Miki, Debbi, and Ashley. I also saw Mattie's nurse tech, Bernadette, and several other familiar faces. Including Shirley who cleaned the units and who I interacted with daily. Debbi (Mattie's sedate nurse angel) came over to greet and hug me and told me it is now time that I take care of myself. Since she knows I am very good at meeting everyone else's needs, demands, and desires. But here is the irony of the matter, I had several people ask me today whether I work for Georgetown Hospital! That is funny! I suppose if you live there long enough, you look like you blend!

After leaving the floor, I then went to the pediatric Lombardi clinic! Why? Well Peter and I have a friend who desperately needs to see a neurologist. She can't get an appointment on her own until May, and in my perspective her symptoms merit help sooner rather than later. So naturally who do I text message when I have a medical issue? If you guessed Aziza Shad, you guessed correctly. Though Aziza is in Ethiopia, as always she answered my text within minutes. She told me to head to her clinic and have her nurse help me, which is exactly what I did. So in one clinic room, I was working on a neurology appointment for a friend and in the next room, I was dialoguing with Mattie's social worker, Denise, and the other two social workers in the clinic. Needless to say, I got to Georgetown at noon, and I didn't leave until 4pm! However, I learned today that in the past three years there has been such an inundation of headache complaints in the Washington, DC area (due to stress), that it is almost impossible to get a timely neurology appointment. Rather frightening!

My day did not stop there! I then drove to Alexandria, to sit with Ann's mom, Mary and feed her dinner. Before getting to Mary's room, her hall mate Catherine was waiting for me to arrive and wanted to speak with me for a while. Which I did. However, this brings me to tonight's quote. My friend Charlie sent it to me today and frankly it is very timely. By the end of everything today, I was livid. As I was leaving Mary's facility, I ran into a patient's daughter. The daughter turned to me and said I was "lucky" because I did not have to visit my mother in this facility everyday like her and Ann. She went on to tell me that caregiving is hard and I have no idea how demanding it is for her and Ann. Typically I would listen, absorb what someone was saying to me, and move along. But I was worn out by 6pm, and couldn't let that comment go. So I EDUCATED her. What we are talking about here is prejudice. Not necessarily racial prejudice, but prejudice in the sense that she judged me for how I looked, dressed, and acted. However, as I remind my readers often, you CAN'T judge a book by its cover. I felt the need tonight to let this woman know I am very well versed in caregiving. Not only from a research standpoint but from a very personal one. I told her Mattie had cancer and I lived in a hospital for over a year and cared for him intensely 24 by 7, and then he died. She had nothing further to say to me, and it is my hope that before she decides to be judgmental with another unsuspecting soul, she thinks twice about it in the future.