Saturday, September 13th, 2014

Saturday, September 13th, 2014

Tonight's pictures was taken in June 2007 at Dutch Wonderland in Pennsylvania.  We took Mattie to experience Lancaster County, home of the Amish and the Dutch Wonderland theme park.  This picture of Mattie and Peter was snapped just before the little tour train took us on a ride around the entire park.  You can see the glint in both boys' eyes that fun was about to be had. This trip was very special for many reasons, but it also marked the beginning of Mattie's affection for roller coasters as it was here that he went on his first roller coaster, well actually, he went on it four times in a row, since he got hooked after the first ride and the thrill that comes with riding a roller coaster.

Quote of the day:  I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence.   ~ Alyson Noel

Hi everyone, it is Peter writing just tonight.  Today our "game plan" was to go see Mattie's new tree that St. Stephen's & St. Agnes had planted this week to replace the yellow wood tree.  In usual DC weather fashion, today was what Vicki always calls it "A gray DC Day."  En route to see the tree the heavens opened up with downpour after downpour, so we juggled our list of tasks today so as not to be caught in the pouring rain outside.  We needed to move all the ornaments, bird house, wind chime and other mementos from the old tree to the newly planted tree. With the 5th anniversary of Mattie's death just past us, both Vicki and I are compelled to make sure Mattie's memory and those things that represent Mattie are addressed appropriately.  

Here is a shot of the new tree (IN ITS NEW LOCATION!!!) in all its splendor and fully decorated. We think it looks quite nice!

The new tree is located right next to the very sandbox that Mattie used to play in when he was at St. Stephen's & St. Agnes as a kindergartner. I think he would have liked to know that his tree and the many interesting objects that hang from it will keep the attention of the kids who play in the sandbox and playground.

This is another angle showing the rest of the playground to the right of the tree. Although we were concerned about the proximity of the nearby basketball nets, upon seeing it in person, we are comfortable that the tree is far enough away so as not to be damaged.

This last shot is a comparison shot of Mattie's two tree locations.  If you look at the right hand side of the picture (look at the right hand edge of the evergreen tree in the background where it is sunny), you will see the trunk of the old Mattie yellow wood tree that is dead in the background and of course in the foreground is Mattie's new tree. Clearly, the old location, although a nice vista, was assessed as not a good place for trees to grow. Perhaps because it is right up against AstroTurf. Maybe the rubber bleeds off into the soil impacting the trees.

We are very happy with the new location, and even more impressed by the attention, sensitivity and speed with which the St. Stephens & St. Agnes community, once again, stepped up to help us.  We truly appreciate their caring, their love and their loyalty and compassion to always remember Mattie.

Tomorrow, Vicki and I will go to the tree armed with bulbs to be planted around the base of the tree, and hopefully to be enjoyed in the Spring.

Friday, September 12, 2014

Friday, September 12, 2014

Tonight's picture was taken in September of 2008. Mattie wasn't a computer fanatic, but his technology teacher, Mary, gave him this Mac laptop to practice some of the skills she was teaching him. Mary practically visited Mattie weekly, whether at the hospital or at home! Mattie gravitated to Mary and I appreciated Mary's visits because it gave me 30 minutes or so to regroup. Mattie created some wonderful art creations on this computer and a very memorable audio file of a song called "una moona" which Mary recently sent me. I have yet to listen to it because somehow hearing Mattie's voice is still very challenging for me.

Quote of the day: Remembering tires a person out. this is something they don't teach us. Exercising one's memory is an exhausting activity. It draws our energy and wears down our muscles. ~ Juan Gabriel Vásquez

I had a very full day today! A nine hour board meeting to be precise, in which I presided over an ethical hearing. So tonight's posting will be SHORT!

I end tonight's posting with a photo of Tim's orange tie. A wonderful paisley variety! This concludes orange tie week in honor of Mattie. I hope you have enjoyed seeing these ties as much as I have, I know this tradition means so much to me! Traditions and rituals help to give meaning to loss and grief and some how Tim's photos help me feel as if I am not going through these anniversaries alone.

Thursday, September 11, 2014

Thursday, September 11, 2014

Tonight's picture was taken in May of 2009. Though I typically try to post photos depicting the season we are in, I selected this photo this evening because Mattie was holding an American flag. Mattie died three days before the anniversary of September 11th. In so many ways this week carries so much sadness. It is a reminder of a personal loss of Mattie and a national tragedy. On September 11, 2011, I was pregnant with Mattie. About two months to be exact! It is a period of time I will never forget.... it was a happy time to be pregnant and yet I was extremely scared living in Washington, DC, so close to the Pentagon and seeing and hearing about such devastation. 


Quote of the day: I know. You can be fine, and then, out of nowhere, a memory blindsides you. ~ Lisa Schroeder

Today marks day 4 of Tim's orange tie
week tradition! This is a new tie he added to the collection. If you look closely the pattern is of beach chairs! I told Tim he now needs some sand, a tropical drink, and an umbrella! Mattie would have loved the whimsy of this tie! It is a very special surprise each morning to receive these emails and to wonder which tie Tim is going to surprise me with. It definitely has become one of the things I look forward to receiving and these emails help me cope with Mattie's anniversary each year. 






Not unlike Mattie's anniversary, I found that many of the people around me today also did not TALK ABOUT the anniversary of 9/11! This to me is quite fascinating considering that we live so close to the Pentagon. Again I do not know if this happens because of the lapse of TIME and people forget, or that people want to forget because we can't handle focusing on such devastation on our own land, or what exactly?! Either case, 13 years later, this is still our reality. It did happen and innocent people lost their lives and families were torn apart as a result. I included photos from each of the three sites impacted by the flights that went down that day and of course in two out of the three crash sites, memorials have already been built. In Shanksville, PA a site is still under construction. 

The Shanksville video (in the link below) is worth watching. Also the NY Times article I included below, though long, I think it is worth reading. It tells you about the 9/11 memorial and Museum that opened up in May of this year. This Museum sounds like a very challenging thing to maneuver through because it isn't just a place to reflect on the tragedy and loss, it is almost like a journey through the artifacts of some of the victims, seeing actual items, hearing tapes, recordings, and basically the exhibits make it as vivid as possible for the viewer. I think if you are sensitive in any sort of way, impacted by grief, a trauma survivor, and the list goes on, there should be warning signs all over this exhibit. Because I am not sure I could handle this exhibit myself, just going down into the depths of this structure could potentially do me in, forget about the nature and content of what is being presented. In any case, I think each web link below is worth looking at because like all aspects of grief and loss..... it is about remembering NEVER about forgetting. 

At the Pentagon:
http://www.nbcwashington.com/news/local/Remembrance-Ceremonies-Held-Across-DC-Area-274722721.html

Flight 93: National Memorial: http://www.honorflight93.org/memorial/

The 9/11 Story Told at Bedrock, Powerful as a Punch to the Gut:

http://www.nytimes.com/2014/05/14/arts/design/sept-11-memorial-museum-at-ground-zero-prepares-for-opening.html?_r=0

Wednesday, September 10, 2014

Wednesday, September 10, 2014

Tonight's picture was taken on September 7, 2008. Despite being in the hospital and battling cancer, Mattie's sense of humor and desire to have fun always came shining through. As was evident with this photo! That evening Peter blew up a couple of rubber gloves for Mattie and Mattie decided to push away the curtain to his room's window and look outside. However, the window did not look outside the building! It looked into the hallway of the PICU where the doctors, nurses, and other staff were bustling about! You can only imagine what people thought as they were passing by his room!!! Mattie was tapping on the glass with his rubber glove balloons and it was a sight that startled many people. Mainly because in the PICU typically you see children confined to their beds, intubated, and unconscious. In September of 2008, Mattie was only in the Hospital for a month by that point, but the staff quickly got to understand Mattie's antics and learned to appreciate him, his energy (because Mattie was UP AT ALL HOURS!!!), and his ability to express his thoughts and feelings. 

Quote of the day: Memories are precious ... they help tell us who we are. ~ Katherine Applegate

I did not post an orange tie yesterday, but that is only because the photo got lost in cyber space! This was Tim's orange tie from Tuesday! 

AND...................................

This was Tim's orange tie today! Tim added a new tie to his collection this year! I love this one because it reminds me of flowers! In any case, the orange tie tradition is going strong this week and just seeing this brings a smile to my face. Tim never met Mattie but some how our story has touched Tim's heart and mind enough that he wears orange on Mattie's anniversary week. I think doing something so touching when you don't have to do anything at all speaks volumes to me. 

I am not one who usually speaks about the virtues of TIME. In fact in most cases I hate time. Time doesn't help with grief. In fact in many cases, time makes grief worse. Time has a way of erasing memories (unless you work hard at keeping them alive). It can make the person you once loved seem more elusive (as if maybe that person never existed to begin with since it seemed so long ago!), it plays tricks on your mind, and overall, time has a way of making others in our lives forget the impact all of this has on us. 

Yet the one advantage to time is it has shown me who is with me on my grief journey for the long haul. Who is committed and doesn't just view us as a chore, task, or burden. Naturally when we worked with Mattie's doctors, nurses, and support staff at the hospital, these providers were all required to work with us. However, now it is five years later. NONE of them are required to do anything for us at all. Yet many of our closet allies at Georgetown are still right beside us and to me they are my friends. Certainly they are professionals, but I see them for more than their titles and their roles. I see them for the human beings that they are, the beautiful people that day in and day out helped me care for Mattie and manage my own emotions, thoughts, fears, and crises. When you work with life and death issues, it is impossible for professional and personal boundary issues not to cross. It would have been impossible for Mattie's medical team members not to feel something deeply for us. None of them of course ever were anything other than professional with us! However, it is just like a mom knows her child, I could sense the emotional connections we were making with several of his care team members and I guess thanks to TIME, I NOW KNOW THIS IS CONFIRMED! We lost so much on September 8, 2009, I wouldn't have also wanted to lose that care network, since we did lose a great deal of our friends. It was bound to happen. I feared it would, I could see it could happen if I did not have a child, if I lacked the commonalities that bring moms together, but again, TIME was needed to prove my point. 

So though this week represents Mattie's fifth anniversary of his death, it also represents a passage of time for Peter and I. A time to take stock of what has transpired in our lives over the course of these past five years. It is my hope that those who have been reading my blog understand that grief after losing a child doesn't stop after the first year. That it is on-going. In fact, I would say that each year that Mattie has been gone from our lives has been marked with different issues, problems, or feelings that arise. It is a constant balancing act and just when I think I have figured out grief something else arises that sets me back or causes me to have to readjust. Any case, I am signing off for tonight while staring at a big Mattie moon. Some things stay important and quite consistent across the five years.  

Tuesday, September 9, 2014

Tuesday, September 9, 2014 -- Mattie died 261 weeks ago today.

Tonight's picture was a precursor to last night's final picture. This was the block of clay that Mattie received. Inside this clay was buried toy dinosaur plastic bone pieces. He had to dig them out and then assemble them into a three dimensional dinosaur. This project kept him busy for hours. It was the perfect thing for Mattie to do because it kept his hands and mind busy while it did not cause him to physically tax himself out. Mattie loved these archaeological adventures and there were times we would transform the room. We would put a big bed sheet on the floor, help him to sit down on it, and he would dig away on all sorts of clay blocks and projects.  

Quote of the day: Something still exists as long as there's someone still around to remember it. ~ Jodi Picoult


As is typically true for me, days after an anniversary are usually very challenging for me. I spent the day at home with a terrible headache. Of course the typical DC grayness did not help one bit. Peter traveled to Kentucky today on business. 

On Peter's flight was a lovely big dog. Not unlike the Golden Labrador that was on my flight back from Los Angeles. Except on my flight the dog was actually sitting in the passenger's lap! At least on Peter's flight this cutie was actually on the floor! Seems to me dogs are becoming more common place on flights which is no surprise since the stress and anxiety associated with travel seems to be increasing exponentially. 



Meanwhile back at home all sorts of odd things are happening. One of Mattie's pieces of art that we put up on the wall this weekend literally just jumped off the wall and came crashing to the kitchen floor. The glass broke in hundreds of pieces. The art work wasn't damaged but it caught my attention and I now have to buy a new frame. Ironically the item that came crashing down had a backdrop of spider collage paper (I feel like Mattie is sending me a message)! Then while I was in the shower, and mind you I have lived in our home for years and this has NEVER happened to me, I felt as if there was a cold breeze passing over me. As if someone was in the bathroom with me..... blowing in my face. It was an absolutely eerie feeling! I honestly have no logical explanation for this. No doors or windows were open. The bathroom door was closed and no one was around me. When I can't explain things anymore, my natural inclination is to think of Mattie and view them as signs. Before Mattie died, I would have been much more pragmatic. Now, I welcome not knowing and being more open to such possibilities. 

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.

Sunday, September 7, 2014

Sunday, September 7, 2014

Tonight's picture was taken in August of 2008. Mattie was pictured with JJ, our resident Jack Russell Terrier. Peter and I saw JJ tonight. JJ was just a puppy when Mattie got to know him and they practically grew up together. In a way it was as if Mattie had a dog without having the responsibility of maintaining a dog! Mattie got to walk and play with JJ whenever he wanted to and they were close buddies. When Mattie died, JJ was literally depressed. For months JJ would come down and visit me and would be looking for Mattie. In fact, JJ kept Mattie's sandals for the longest time right by his doggie bed and he refused to part with them. The funny part is JJ took these sandals from Mattie. He literally pulled them right off Mattie's feet and carried them home with him one day. He wanted a keepsake of Mattie's, and I was fine with it because the sandals were old and I wanted Mattie to actually transition to his new sandals (this sandal issue occurred before Mattie developed cancer, but JJ held onto the sandals for YEARS!). JJ became VERY attached to those sandals! They provided him some sort of comfort especially after Mattie's death. Who ever said that animals don't grieve, is VERY wrong!

Quote of the day: A tormented mind wants to forget, what a broken heart will always remember. ~ Anthony Liccione

Peter and I worked at home today. I spent the morning designing a shadow box filled with Mattie's art work. This was art that I had taped up all over our kitchen. When we painted the kitchen in August, I took all the art down and decided to frame it. 

This is a close up of the shadow box. I had never used a shadow box before but I consulted with someone at AC Moore on Friday who was super helpful and he understood exactly what I was trying to do after I showed him some of the art pieces. What you see here is a combination of art from Mattie's preschool and kindergarten classes. Also note the star in the lower right hand corner. That was a star we created together while Mattie was battling cancer at the hospital. I will never forget that night we drew that star! It was May 30th and Mattie was HIGHLY agitated. He wanted to draw a star but he did not know how to and this notion sent him OVER the EDGE! I mean he went bonkers! You wouldn't think something so trivial could upset someone so, but Mattie snapped. I knew that what was troubling him had NOTHING to do with the star, but the issues were getting displaced onto the star because that seemed like a safe place to put them at the time. In any case, patiently I worked with him to generate this star. It was such a nightmare of a moment that once the star was completed I decided to always keep this star because I honestly did not know if either one of us were going to survive the anxiety, fear, anger, and hostility of that hour. We both got a gold star that night and as always we found a way through this difficult time together. So to me the star had to be a focal point of this art piece. 

Peter and I created this Mattie wall this weekend and we are proud of it! Our kitchen wall looked very different about two months ago! This is now a beautiful tribute to Mattie. Which is well timed on his fifth anniversary. I end tonight's blog with a reflection back in time to September 7th of 2009...... on the eve of Mattie's fifth anniversary of his death. 












Blog Posting from September 7, 2009:

Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an ominous sign today!

Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this and had a better feeling for his condition and his decline than Peter and me. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!

Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). We were also surrounded by our THREE angels today: Ann (our angel of HOPE), Linda (child life specialist and our angel of caring), and Debbi (our sedation nurse angel). They all came to support us and Mattie. My parents sat with us as well and this whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!

Eating wasn't easy for me today, but I had a lot of people around making sure that I actually did. Ann took me outside to eat something, and I needed that break, because sitting and watching death, and the death of Mattie almost takes your breath away.

Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally I am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.