Monday, September 8, 2014

Monday, September 8, 2014 -- The fifth anniversary of Mattie's death. 

Tonight's picture was taken on September 5th of 2008. It is one of my favorite photos I took of Mattie at the hospital. Mattie was two months into chemotherapy treatment and my friend Susan came to visit us. With her she brought this "project." The project involved digging through clay to unearth toy dinosaur pieces. Once Mattie dug through the clay to get the pieces he then had to assemble the pieces like a 3-D jigsaw puzzle. He loved it and got to wear goggles and use tools. It kept him busy for hours! After the process was over and the dinosaur was assembled he literally was exhausted. Mattie was a kid with a lot of stamina and even on chemo he would try his hardiest to push through those awful days. In any case, after hours of excavating I snapped this beautiful photo!


Quote of the day: I am hopelessly in love with a memory.  An echo from another time, another place. ~ Michel Foucault

PETER AND I WOULD LIKE TO THANK ALL OF YOU FOR YOUR EMAILS, TEXT MESSAGES, AND GENEROUS CONTRIBUTIONS TO THE FOUNDATION IN MEMORY OF MATTIE. THEY MEAN A GREAT DEAL TO US!

Today marks the fifth anniversary of Mattie's death. I can imagine that some may feel with time and as each year passes these anniversaries get easier. In all honesty perhaps I would have this same notion if I were reading this blog rather than living it. We want to believe this or need to believe this! It is what we all HOPE for! Isn't it?! After all if it doesn't get easier, then what? Unfortunately 'the then what' pretty much describes Peter and I! 

Peter and I talked about Mattie's death today and I think Peter verbalized it quite well. In so many ways Peter feels that the pain of Mattie's death is just as real and just as painful as the day he died. Nothing has changed for Peter since 2009. The only thing that changes his how Peter manages and copes with Mattie's loss. This is actually a very interesting way of looking at Mattie's death, and to some extent for Peter this has been difficult because he was hoping that there would be other changes. More tangible changes regarding grief itself. But he is correct. The grief will always be the grief, it is how we handle the grief, that is important. In a way, this gives us the ultimate control. Which is challenging especially when we operate in a world that doesn't understand grief, doesn't want to hear about it, and for the most part wants it tucked away and put it out of sight. Not the best scenario for helping someone to process grief. Which is probably why the majority of people land up seeking therapy! As I always say NOT acknowledging a loss (even an anniversary) is ALWAYS, ALWAYS the worst thing you can do for a person who is grieving. I don't care what setting we are talking about, including a place of work! There are no excuses! 

Early on in my grief process I consulted with Mattie's social worker. I was getting a lot of pressure from my friends that I needed counseling, just a month after Mattie's death. Denise, Mattie's social worker, said to me..... do you need counseling for yourself or because others are saying you need counseling? Prior to Denise working in a hospital setting she was a grief counselor. I heard Denise loud and clear. Denise was assessing my functioning and was telling me that people were judging me because they did not understand what I was up against and wanted me 'fixed.' But there are no quick fixes for my issues. Similarly as she wrote to me today, there is NO ONE WAY to grieve. Again reminding me that how I feel is how I feel and it is okay. 

I was deeply moved by the number of emails we received from our Georgetown Hospital family today! It meant a great deal to us.

Some of my faithful readers will recognize the orange tie photo right away! This is Tim's first orange tie photo I received for this week! Peter and I met Tim at Georgetown after Mattie died. Tim was an associate administrator in the philanthropy department and worked closely with Mattie Miracle. Tim never met Mattie but he got to know us well and through us got to appreciate Mattie. Each year, starting on the anniversary date of Mattie's death, Tim would wear a different orange tie throughout the entire week at work. Tim would email me a photo of him in his tie each morning. It has been a yearly tradition that I have grown to love. In so many ways, though I am not sure Tim realizes this, it is a tradition that helps me get through the anniversary week! This July, Tim retired from Georgetown. Which is a major loss for us in an of itself. In August I started to prepare myself for the fact that there would not be an orange tie week during Mattie's anniversary this year, since I figured that with Tim gone from Georgetown, Tim was moving onto other things. When I opened up my email this morning, this is the photo I found! AN ORANGE TIE! Tim maybe gone from Georgetown, but the Orange Tie tradition is NOT gone from Tim. I am deeply touched! As I am famous for saying..... "there are NO WORDS" (and I will add Tim's line...) my friend!

I decided to visit Georgetown University Hospital today because I had it in my mind to do a stone rubbing of Mattie's memorial stone. I would like to note that this stone was given to us by Tim upon his retirement from Georgetown. One of the annual anniversary things that I would like to do besides visiting Mattie's tree, is to visit this stone. It was my hope to do a rubbing of this stone and Peter and I went to an art store today by his office to get the appropriate art supplies to do a stone rubbing. However, despite my best attempts, I was unable to make a successful rubbing. This is NOT like rubbing a headstone at a cemetery. Something I used to do as a child. 

While at the hospital I also made my journey to the Hospital Rose Garden. To me the Rose Garden is a special place. This is where I would go to escape the chaos of living inside the hospital. I did not get outside often but when I did this, the garden was my haven. In addition, the rose garden was where I was on August 5th, the day Mattie and I sat together as we learned his case was terminal. We had a very tender moment together sitting on a bench and it is a moment trapped inside my head which I will never forget. In any case, as soon as you exit the Comprehensive Cancer Center this is the sight you see. You have to understand when you are trapped inside an institution, coming outside to this seems like PARADISE. It was fresh air, trees, grass, plants, and freedom. It symbolized life to me. The complete opposite of what was going on inside the hospital!

As you walk along the pathway above, you see that concrete building on the left. That building is the medical library. In front of the library are all these stones. Mattie LOVED this area. On occasion I would take him out there in his wheelchair for fresh air. Mattie loved picking up stones! If you recall, when Mattie went to Roosevelt Island with us when he was well, he would always come home with a prize from nature. So in essence when he went for a walk on campus, he wanted to come back to his hospital room with a stone prize. I tried to regulate that since these stones were not for his taking, but one day he did actually take a huge stone back to his room with him. This stone now sits by our front door. Most people just pass by this stone, not noticing it as they enter our home. But Peter and I know exactly where this stone came from and what it symbolizes. 

As you continue walking passed the concrete building you eventually find the Rose Garden! 

Within the rose garden are these two benches and a fountain. Sometimes the fountain is on and sometimes it isn't (like today!). I always sat on the bench on the right. I don't know why (maybe because it was less sunny on that bench). I have no idea why more people do not enjoy this space, but they don't! To me it was a refugee from my reality and it was on that bench on August 5th that Mattie curled up in my arms and asked to hear the story of the day he was born. Mattie always asked to hear this story when he felt uncertain or needed to feel secure and loved. He was wise beyond his years and intuitively knew he was very ill even before getting any of his scan results back that day!

I leave you tonight with the reflections from the blog on September 8, 2009, the day Mattie died. What may not be clear from reading this posting is that Mattie did not want to die, he fought it. Mattie was given propofol not for comfort but to literally put him in a coma to help him with the dying process. Also at the time I was probably being very conservative in my blog writing regarding my description of the use of pain meds (so as to not get anyone at the hospital in trouble). But the room looked like a war zone, not to mention Mattie's bed..... which was covered with syringes! I am quite sure that Mattie was maxed out on pain meds, and who knows what the legal and ethical limits were for their usage in children, and WHO cares to be quite frank. All I know is there wasn't enough meds possible to manage Mattie's pain and this is a vision that will always remain with me FOREVER! 

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Blog posting from September 8, 2009 --- The Day Mattie Died.

I am mentally wiped out from today. I received over 150 e-mails, but I am unable to stay awake long enough to actually read them! So I look forward to reading them tomorrow. Mattie's blog was hit over 5000 times today, so I appreciate you visiting electronically Thanks Norma (one of our great sedation nurses) for the chocolate cake today. It is inspiring me to write the blog.

Mattie had a VERY harrowing night. From 2am on, Mattie was having trouble breathing, and appeared to be in intense pain. It was the most intense five hours of our lives and the sights and sounds we observed during this time were horrific, ones I don't wish on anyone else. I can still see Mattie's sweet face writhing in pain, gasping for breath, and making a horrible congested sound, which if I don't ever hear this again in my lifetime, that would be too soon! Dr. Shad called this chest congestion, the "Death Rattle." That is an accurate description because when you hear it, you know death is pending. In all reality I found these five hours frightening because we just did not know how the death process would unfold.

We were blessed to have Sarah Marshall, one of Mattie's outstanding HEM/ONC nurses, working with us last night. I now have four angels in my life: Ann (my angel of Hope), Linda, (my angel of caring), Debbi (my sedation nurse angel), and Sarah Marshall (my angel of mercy). Sarah Marshall was assigned to work with Mattie only last night. Typically a HEM/ONC nurse is assigned three patients during a given shift. Sarah Marshall was proactive and did everything that was humanly possible to make sure that Mattie was relatively pain free, which WASN'T easy. Mattie was on IV dilaudid, dilaudid boluses by hand, a Versed continuous drip, as well as boluses of Versed. In addition, Mattie was receiving albuterol through an inhaler, which helped to keep his airways open.

Peter and I spoke to Mattie throughout the night. We weren't sure exactly what to say, but we told him we loved him, were proud of him, and in essence he could die and we would be fine. We wanted him to know we understood he was in control over how the night played out.

By 6:15am, Mattie was receiving very high dosages of pain medicine, however his pain wasn't subsiding, and frankly we were getting concerned with how we could manage his very over taxed heart and body. Dr. Shad prescribed propofol at that point to put Mattie in a twilight sleep. But propofol is known to slow down the heart rate, and this assisted in giving Mattie relief and helped to stop prolong the agony! Mattie died within one hour of the propofol infusion. While Mattie was in pain, I could see he would try to sit up and talk with Peter and I. At one point, he mentioned to us that "he was going to die." So we concurred with him and this provided some leeway to talk about our fears and hopes for him. We told him we loved him and that it was okay to let go. Periodically Mattie would sit up and try to open his eyes, and one time he looked at me and said someone else was in the room with us, by the door. Well no one earthly was in the room with us, but we knew Mattie's death was near. Here is the thing though, seeing him suffer in pain, and listening to this "death rattle" for hours on end, made the option of death much more peaceful and appealing. My heart was aching over the pain Mattie was in. Dr. Shad assures me that Mattie was always comfortable, and the "death rattle" is much harder for the caregiver to listen to for hours.

As Dr. Shad said to me today, "Mattie fought death." Mattie just did not want to die. Dr. Shad feels that this was because he did not want to leave Peter and I behind. After all the three of us thought we would be together for always. Careful when you assume things!!! Dr. Shad told me that she has been an oncologist for 25 years and in all her career she has only had to use propofol on one other child patient! She said Mattie was her second, and Mattie needed it because he was resisting death. I actually found her statement very empowering, because if Mattie was willing to be that congested for such a significant period of time then he really must love us dearly.

Once on propofol, Mattie's body started to relax, and I decided to lie down next to him on his bed, as we were awaiting death. I wasn't sure what death was going to look like, but slowly one by one his respiratory rate went to zero, his pulse oximeter went to zero, and his heart rate also went to zero. Hearing all these values flat line was another sound I won't forget any time soon. But by that point Mattie was in my arms. The nurses and doctors gave us about an hour alone with Mattie after he died, to say good-bye. This was a very touching and tearful hour. How do you say good-bye to your child? Both Peter and I know on some level that Mattie has died today, but on the other hand, we are having intense trouble believing this. As Debbi said today, Mattie's face looked like he was smiling and in peace. Thank God because the five hour ordeal was something I am trying to forget. 

Sharon, the Lombardi Clinic chaplain, was with us starting at 4am. She helped say a prayer before and after Mattie's death. Sharon did a wonderful job, and though I have my own issues I am working out with God, I saw the need for prayer and to ask God to spare Mattie more pain and suffering.

After we had some private time with Mattie, he was visited by over 20 Georgetown Hospital employees. Jenny, Jessie, and Linda bought four stepping stone kits and we all worked around Mattie and did a stone for each foot and each hand. This is something I always wanted to do, and I am happy to have these cherished gifts that will always remind me of Mattie. I appreciate Tricia, Debbi, and Katie's help, because as Peter and I were pushing Mattie's hands and feet into the cement like substance, they were cleaning the substance off of Mattie. It was an amazing experience that occurred today, because in Mattie's postage stamp sized room, many employees came by to share their fond stories of Mattie with us. It was touching to see and hear how much Mattie has touched people's lives. My parents were so happy to be able to meet in person many of the people I have been writing about on the blog. In addition, Brandon, Mattie's big buddy, also visited. I could tell that Brandon was very upset to lose Mattie, and I told Brandon that Mattie loved him and considered him a good friend.

Once all the visits were over, Peter and I had the last chance to say good-bye to Mattie before preparing him to go to the hospital morgue. Lovely, no?! Saying good-bye to that beautiful face, those cute cheeks and hands was down right impossible. There are times the true reality hits me and I don't know how we will go on. Literally!

Tricia, Debbi, and Katie then gave Mattie a bath, and as unpleasant as this sounds, they had to place Mattie's body in a body bag and transport it to another floor in the hospital. I removed myself from the room, because I did not want to see the body bag. My precious son landing up in a body bag was a little hard to take. I sat outside with Dr. Shad and Linda, and Peter remained to help with the process. Mattie's "big brother" Jey came up to see us and also stayed to help transport Mattie to the morgue. He said no one else could do it, it was his responsibility today, because he loves Mattie and wants to give him a safe drive on his final destination within the hospital.

Saying good-bye to Georgetown today made me sad. I know we are always invited to C52, but it isn't the same. The nurses were clearly affected by Mattie's death and in many ways I was surrounded by this amazing community that we have gotten to know over 13 months of hospitalization. Jey also told us a funny story. Jey could picture Mattie up in heaven and arguing with God about his wings. Jey said Mattie would WIN about how large they would be!

We arrived at the hospital last Thursday with three of us, but today we only came home with two. How I miss the noise, sights, and directions given by Mattie, instead what I have floating around in my head are the sounds of hospital monitors. When we arrived home, I saw Speedy Red (Mattie's ride on car) and almost lost it. In all reality being around Mattie's things bring about great sadness.

Conversation for Peter and I is a lost art form. Mattie has been preventing Peter and I from talking for months. Now that Peter and I have the freedom to eat and talk when we want to, we feel awkward about this. Our world revolved around Mattie, and now nothing makes sense to us. In a way having these freedoms make us feel guilty, because on some level this just reminds us that we are childless.