Tonight's picture was taken on August 5, 2009. The day we learned that Mattie's cancer became terminal. On that day we went from actively battling cancer to end of life care and managing even more intense pain and suffering. Mattie was pictured in front of a statue of an elephant. This elephant is an on-going art therapy project at Georgetown and why Mattie loved this elephant is because one of his nurses, Kathleen, created a piece of pottery for it which is permanently cemented onto the elephant. The elephant isn't far from the Hospital's rose garden, which is a place we all escaped to whenever we were allowed out of the hospital and the weather was decent!
Quote of the day: There's no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower
In the midst of contending with our own grief and loss today, which is only heightened on anniversary dates, I received a call from one of Mattie's oncologists at Georgetown. She wanted me to know that a couple just lost their only child to osteosarcoma TODAY. A child who shares Mattie's anniversary, seemed too surreal to me and with the same type of cancer. Mattie's doctor was reaching out to me to see if I would consider supporting this family through their first year.
Peter and I both posted Mattie tributes on Facebook and Twitter today (Vicki's facebook page: https://www.facebook.com/profile.php?id=668118467, Peter's facebook page: https://www.facebook.com/profile.php?id=100009631901344&fref=ts). We have received hundreds of responses from people and several even shared our postings with their networks, told us their experiences with childhood cancer, and many of our friends either dressed in orange or even switched their profile photo on Facebook to reflect and honor Mattie. It was deeply moving to see this outcry of support!
However, what struck me immediately, was those who have also lost a child to cancer ALL ADMITTED that the first year after the death is tough, but it gets worse NOT better. I absolutely agree! As I always say, the first year you are so in shock and numb that in a way it protects you from emotionally feeling the blow you just suffered. The first year is about physical survival. Learning how to live in the world, breathe, get out of bed, and take care of your physical needs. However, by the second year, the reality of the loss truly hits you and it ISN'T pretty when it does. It seems like at that point that your life is caving inward and there is no escaping the despair, isolation, and anxiety of losing a child. The problem with this is right about the second year is when one's support community usually dwindles, which is a recipe for disaster. Because it is at that point, a parent can feel abandoned, confused, and truly disengaged from society. Surviving the loss of a child is a lifetime endeavor, which requires a great deal of emotional support. Support which is hard to find in the world one used to exist in.
I could naturally write and talk about this until the cows come home, but hearing that others around me understand this, have experienced this, and also struggle is very helpful. Because with grief, our society can make you feel as if YOU ARE THE ONE WITH THE PROBLEM.
As I reflect on the parents who just lost their only daughter today, I remember that moment in time. When we arrived at Georgetown as 3, and after Mattie died, we left as 2. It was a horrible feeling, and yet when you support parents through the first year, people are fragile and sharing the big picture.... that grief is monumental and pervasive and it lasts over the course of your lifetime isn't helpful. This is where sharing one's knowledge is not always helpful, it requires to really sit in the moment with that family and follow their lead and support those needs.
In honor of Mattie and his incredible battle he endured, even in death, I wanted to share an excerpt from the September 8, 2009 blog:
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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. 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.
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.
Mattie died at 7:15am, at which point we had some private time with Mattie. However, we were then 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 is 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 and almost lost it. In all reality being around Mattie's things bring about great sadness.
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Our friend Sharon sent us a selfie of
herself in orange!
My long time friend Mary Ann, sent me this
beautiful rose from "Margaret's rose bush" today. This bush is near
her house and we both call it the "Margaret bush" because we both
knew my friend Margaret loved roses and when Margaret died, Mary Ann started
this tradition of keeping me posted about how this bush is doing through the
seasons.
Mattie always loved this tile, and the reason Kathleen chose a monkey is because she used to call Mattie her "monkey boy." Why? Mattie had a left leg, the only limb not operated on and cancer free, that was mischievous and acted like an arm with a hand and fingers. Any case, Mattie's left leg was nickname "curious George," which of course is a monkey in a story book. So this is the origin of the title, Monkey Boy! I did not think this monkey would still be on display, but low and behold we found it today!
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