Tonight's picture was taken in February of 2009. My friend and colleague, Susan, came to visit Mattie in the Hospital. Susan had Mattie's number and always came armed with interesting things for him to do when she visited. That day, Susan gave Mattie a block of clay and in the clay were plastic dinosaur parts. Mattie had to put his goggles on and do some digging through the clay to excavate all the parts. He then assembled the parts to form the dinosaur you see before you in this picture. That sounds easier than it actually was, Mattie spent a great deal of time that afternoon sitting on the floor of his room, digging. We put a bed sheet on the floor, and literally there was clay and dust flying everywhere. Mattie LOVED it! After this adventure, he was exhausted. I captured that moment of happiness and exhaustion in this beautiful picture. This is one of my favorite photos of Mattie while he was in the hospital. Since we remembered Mattie today publicly at Georgetown, I feel this photo is very fitting for tonight's posting.
A remembrance day poem: We Remember Them by Roland B. Gittelsohn
In the rising of the sun and in its going down, we remember them. In the blowing of the wind and in the chill of winter, we remember them. In the opening of buds and in the rebirth of spring, we remember them. In the blueness of the sky and in the warmth of summer we remember them. In the rustling of leaves and in the beauty of autumn, we remember them. In the beginning of the year and when its ends, we remember them. When we are weary and in need of strength, we remember them. When we are lost and sick at heart, we remember them. When we have joys we yearn to share, we remember them. So long as we live, they too shall live, for they are now a part of us, as we remember them.
I spent a good portion of the morning debating back and forth as to whether I wanted to attend the Georgetown University Hospital "A Time of Remembrance" ceremony. Peter wasn't far behind me in my feelings and he already determined yesterday that he wasn't going to speak before the attendees today. I respected and understood his decision. I did commit to Rev. Sharon (the reverend who sat with us the night Mattie was dying and said a prayer for him before he died and after he died) that we would be coming, and a part of me felt we needed to do this for Mattie. Logistically whether we went or did not go, Mattie's memory would always be remembered within us, but there seems like there is a spiritual connection for us to return to where Mattie was treated and died.
Peter and I both selected a photo of Mattie that we brought to display during the ceremony. I selected the pumpkin picture that is permanently posted on the blog, and Peter selected a Christmas photo of the three of us! We arrived at the Hospital early, so we placed Mattie's photos down in the chapel and then sat outside in the sun. I was freezing, but sitting next to Peter and being in the sun helped. While we sat outside, we reflected on the very space we were in. We sat on this particular terrace overlooking the parking lot quite often when Mattie was a patient. While taking in the sights, it dawned on me or I should say it HIT me that....... I do not miss living in the Hospital at ALL! That is a big change from how I felt last year. Last year at this time, I desperately missed our Hospital community and felt so lost being home and away from this incredible support network. A network that became our 24 hour a day family. This year, I still miss the people, but I can't imagine living in those rooms or dealing with those bathrooms for another second.
When the ceremony began, we could see that there were several nurses and doctors we knew in attendance. Also behind me sat, Nancy. Nancy of the dynamic musical volunteer duo.... Jerry and Nancy. It was lovely to have Nancy's support behind us! The ceremony was about an hour, it included prayers, hymns (which were actually quite beautiful and I may post the words to them in the next few days), reflections, candle lighting, and staff and parent reflections. Rev. Sharon did another great job this year of delivering a powerful reflection. This year's message was of HOPE and how we can find hope after losing a child. When Mattie's name was called, Peter walked up to the front of the chapel and lit a candle. He told me he selected the candle right in the middle of the circle of other candles. Most likely as a symbolic gesture of Mattie being an important and prominent part of our family. There were two parent reflections today. Somehow there seemed like more to me last year, but then again, I was in such a fog then. This year, I was able to focus on what was being said, and did quite well for most of the ceremony, until one of the hospital nurse administrators spoke. Alice spoke about the role of a nurse, their bed side manner, their care and concern for our children, and how they are personally affected when our children die. Needless to say, Alice's message brought back many memories for me. Her message touched my heart, and caused me to let down my guard. Which is a good thing, but with that comes many emotions that don't end once the ceremony does.
I had been thinking all week about what I wanted to say today. I purposefully did NOT write anything down because I did not want a script, I wanted to speak from the heart. Despite this desire, I did spend some time thinking about what I would say, because in such an emotional arena, coming prepared is vital. I tried to recreate what I said this afternoon for you:
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Hello, my name is Vicki Brown and in my hands is a picture of my son Mattie. Mattie was diagnosed with Osteosarcoma in July of 2008, when he was six years old. After many months of grueling chemotherapy and surgeries, he died in September of 2009. Mattie was a healthy child up until age six. When I attended this ceremony last year, Mattie had died two months before. I was rather numb last year, and therefore attending this ceremony and speaking was far less emotional for me. This year, I am up here representing my husband, Peter (who is sitting in the audience) and I.
I would like to share with you some of the things I learned this year, during my first year of grieving. I say that, because I now understand that grieving the loss of a child is a life long commitment. I have heard many cliches this year as others have tried to comfort me or help me mourn the loss of Mattie. But that is all they are, they are CLICHES, and I HATE them. My top three are: 1) Time heals all wounds, 2) God doesn't give you anymore than you can handle, and 3) there is a reason for everything that happens. Well I can assure you time doesn't heal all wounds, God can give you more things than you can handle, and honestly what possible reason is there to take away the life of a child? Anyone who believes these cliches HAS NOT lost a child!
Mattie was a fun loving, bright, energetic, and humorous little boy. He was also a boy who LOVED bugs. Mattie would come prepared during each hospital visit with a bag of plastic bugs. He got great delight out of scaring his nurses and watching them jump at the sight of one his realistic looking bugs. The nurses were our angels and they played along with Mattie and allowed him to be the free spirit that he was. Now that Mattie is gone, I find that I am turning to nature to connect with him. For perhaps the first time in my life I have noticed butterflies, hundreds of them, and frankly the moon never seemed so bright to me as it has this year.
Losing a child is NEVER about forgetting it is about remembering and I am so happy Georgetown gives us this opportunity to share our memories together.
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After the ceremony was over, I had many people come up to talk with me. Parents appreciated my candor about expressing grieving as a life long process. This is how I feel and it was comforting on some level to know that others feel exactly like me. It was like we were all speaking the same language today. I had the opportunity to speak to one couple who lost their daughter, and we literally said at the same time, that we both feel as if our former selves have died, and now we are left to exist on a day to day basis. Another woman came up to talk with me, and she lost her son 8 years ago. She wanted me to know that his death still pains her, and that I am absolutely right, the pain remains always.
As we left the chapel, we saw Brenna. Brenna was one of the outstanding PICU nurses assigned to Mattie's care during one of his limb salvaging surgeries and for his sternotomy. Some of my faithful readers may recall that Mattie strongly disliked the respiratory care therapists at the hospital. They wanted him to do breathing exercises post-surgery and literally would stand over him and watch him do them. They clearly did not understand Mattie, and Mattie refused their treatment. It made for some challenging times for me who had to serve as his interference and advocate. Needless to say, when you don't listen to me, I report you, and I met with the Head of Respiratory Therapy at the hospital and explained my concerns for Mattie and the other children on the floor. In the midst of all of this, Brenna (a PICU nurse) devised her own ingenious respiratory therapy game using Sponge Bob (A Mattie Favorite!!!), water, a hospital basin, and two straws. The goal of the game was to see who could blow Sponge Bob down the river in a plastic cup boat and cross the finish line to win the race. Naturally my role that entire year was to be a complete screw up! I played the role very well. Mattie won each Sponge Bob race, and he really was using his lungs in this game. This game became a lifesaver to me, and Brenna earned a special place within my heart. She is an exceptional nurse, but also an incredibly compassionate person. She worked hard to gain Mattie's trust, but she indeed got it. When we saw Brenna today, we learned (or could see!!) that she is pregnant with twins. She was a beautiful sight to see and despite carrying two, she is in good spirits and is able to do her 12 hour shifts. While talking to Brenna, Anthony approached us. Anthony is a volunteer at the hospital and plays the violin. In fact, each time Anthony was at the hospital, Mattie seemed to allow Anthony to play and to interact with him. Which was unusual, since Mattie was very selective. Anthony came up to me to let me know how much he appreciated Mattie and how special he was. He told me that Mattie was always clear about what he wanted and was able to speak up to get his needs met. He said that there were days where Mattie told him he heard enough and it was time for the music to stop. Anthony said that he appreciated Mattie's candor because many times children don't give him feedback and it is therefore hard to know when to play or when not to play without such communication. What Anthony then said hit a chord with me, and that was Mattie had a way of getting other kids to be engaged and to listen. I would have to say Anthony was correct. Mattie was a force, and what Peter and I find so fascinating today with conversing with Brenna and Anthony is that they did not ONLY work with Mattie, they UNDERSTOOD Mattie. I was actually very touched to hear about Mattie through their eyes, hearts, and memories. In fact, this was even more beneficial than the Remembrance Ceremony itself.
As we were driving home, Peter asked me if I saw the flashing light bulb in the chapel. I hadn't noticed, so I asked him to tell me more. Peter said throughout the ceremony a light bulb behind a piece of stained glass was flashing. So after the ceremony was over, he went over to look at the bulb. What was on the piece of stained glass in front of the blinking bulb? But the name, Matthew, for St. Matthew. I told Peter that I viewed this as a sign from Mattie. He was trying to get Peter's attention during the service and in typical Mattie fashion it WORKED!
Later today, I visited Mary (Ann's mom). On my drive to Alexandria, right over my head flew a beautiful Great Blue Heron. It was a graceful and peaceful sight, and it made me pause and think of Mattie. As this mom I met today, who lost her son 8 years ago, said to me...... Mattie is my angel and he is all around me. I just need to look!
Tonight was my last evening with Mary. I brought her dinner and we chatted. But both of us were simply off today. I know I was off because I spent an hour crying and felt wiped out from that experience. As I left Mary tonight, I explained that Ann was coming back and this was my last night I would be visiting. I told her I enjoyed our time together this week, and she agreed. Mary is certain I should have been a nurse. I always laugh when she says that, but at the same time take this feedback as a high compliment.
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