Saturday, March 12, 2011

Saturday, March 12, 2011

Tonight's picture was taken in April of 2004 on Roosevelt Island. Peter was trying to teach Mattie how to skip stones in the water. Mattie loved watching how Peter could do this, and each time they went by the Potomac River, there was always a dialogue between them about the right technique. Roosevelt Island holds a lot of memories for us, which is most likely why Peter visits the Island every weekend, regardless of the weather.

Quote of the day: Love is a fabric which never fades, no matter how often it is washed in the water of adversity and grief. ~ Unknown

Peter and I spent the day working on Foundation Walk materials and designing the website to host registrations. The website hasn't gone live yet, but as soon as it does, we will be communicating this through various electronic means. I imagine each year that we host a walk, the process will become easier. But for now, as we are still such a young organization, everything must be built from the ground up. Which takes time, focus, and patience. I am fortunate that Peter has technology skills, otherwise, I am sure I would be extremely frustrated with how to upload and design things on the Internet.

In the midst of an entire day by the computer, I received a lovely email from Jenni Chase. Jenni is the radio personality at WMZQ who I wrote to this week. Jenni's response was very kind, compassionate, and supportive. Not unlike what I imagined it to be like, based on my experience listening to her each and every morning on the radio. As I told her, her email made my day today, and I appreciate her help securing Kenny Chesney tickets for our Walk raffle and for helping to promote our walk on her radio show.

Marketing, fundraising, and other business skills are not things that I am trained to do, however, with the right motivation, I have learned almost anything is possible. Then when I interact with such nice and receptive individuals like Jenni, it makes my fears subside. There are people out there who don't know Peter or I, and yet want to hear our story, and want to help the Foundation and more importantly children with cancer.

Peter and I are spending tomorrow focused as well, since it is important that we get the registration website designed before he leaves on a business trip for Africa in a week. Peter will be in Africa for two weeks and this separation is challenging. Challenging because we rely on each other in different ways to get through a given day. With Mattie gone, and Peter on travel, our home takes on a completely new dynamic. I am not the only one who misses Peter when he goes, our cat, Patches, is literally besides herself. She has a very tight bond with Peter, and when he is gone, she is agitated and wakes me up at 5am each and every morning. I have tried all sorts of remedies for this, but nothing works. Unlike a dog, cats are really not trainable.

Later this evening, Peter and I received the link below from Georgetown University Hospital. I was very pleased to see that our Foundation's event was being acknowledged since you will learn shortly with the launch of the Walk website, that all walk proceeds this year will be going to the Childlife Department at the Hospital. http://www.georgetownuniversityhospital.org/body.cfm?id=557817

I would like to end tonight's posting with a video I received by email yesterday. I was about to delete the message last night, but the title of it intrigued me.... Life is like coffee. Not being a coffee drinker, I wondered what on earth was the message here. This is a motivational video in a way, and one that is trying to reflect on the true meaning of life. Hope you get something out of watching it, or at least are able to reflect on the coffee in your own lives, and NOT the cups. http://flickspire.com/m/Lgroup/LifeIsLikeCoffee

Friday, March 11, 2011

Friday, March 11, 2011

Tonight's picture was taken in April of 2004, at Mattie's second birthday party. Before all of Mattie's friends and family arrived, my mom snapped a picture of the three of us together. Who would have known how special this picture would become to us? I guess at age two, NO mom thinks her child will only live five more years, so you better appreciate it! Mattie's birthday theme that year was trains. Mattie loved trains, a love that lasted until the day he died.

Quote of the day: Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief. ~ C.S. Lewis

Sometimes, like this week, when I sit and wonder why I am unhappy, upset, and in a funk, I stop and reflect on my life. I think CS Lewis' quote captures it best. Not only do Peter and I live each day in grief, but worse we know we have to live the rest of our lives in grief. The thought of that alone is quite overwhelming, daunting, and sometimes impossible to absorb. In a way, CS Lewis verbalized what I have been feeling, and yet find so difficult to put into words.

I began my day with my monthly professional counselor licensure board meeting. I have served on this board for many years, and despite my world being turned upside down, I still enjoy this position greatly. I love our board staff and the composition of our board members. After our meeting today, the topic of death and dying came up over lunch. One board member said she is afraid to die, and another said she was afraid to talk about this issue. Writing about this issue each and every day, makes it SO commonplace to me. I can talk about death like some people talk about sports and politics. It rolls right out of my mouth. I explained to the board that after you watch a seven year old die a horrific death in your arms, you realize that death happens. There is nothing you can do to stop it, you are powerless over it, but perhaps knowing that I also don't fear it. I told them after losing Mattie, my regard for life is different now. That once you lose a child, to some extent your life and purpose do not seem as meaningful. I guess I did not realize how powerful my words were, because I saw some people tearing and another board member came up to me after the meeting and gave me a big hug. She too lost someone close to her and she doesn't feel comfortable talking about it in front of others, but felt that she could with me. I carry on in my position as board chair and I function effectively. But if you scratch the surface, like people did today, you will see I have a lot to say, I feel a great deal, and the pain is very real.

Switching subjects! I remember when I was a little girl, my dad would listen to country music in the car. My mom at the time was NOT into this type of music. However, she came around! The irony is my dad is a strong willed, accomplished executive, and what I am getting at is NOT the kind of person you would think would listen to country music. Or at least that was my thinking as a child. However, being introduced to country music at an early age, what intrigued me about this music was the STORIES, the TOPICS, and the EMOTIONS discussed. I distinctly recall my dad and I getting a major kick out of this song, "Your Nobody Called Today." http://www.youtube.com/watch?v=CBACEa-onkY

In fact, I imagine when he reads tonight's posting, he will be chuckling. I think as a parent you don't always know what your children absorb when they are with you. But I learned from my dad that you can be tough, strong minded, and also like country music. Now as an adult, I completely relate to country music. In fact, I am sure if I polled mental health professionals, many of us would gravitate to this music. Why? Because the music is real, it talks about real life issues, problems, feelings, and dilemmas.

In the midst of this day, I received an exciting email. I had sent an email to a radio show personality that I listen to each and every day. As many of my readers know, I am a big new country music fan. So I decided this week to write to WMZQ. WMZQ-FM is a radio station located at 98.7 FM in Washington, D.C.. The station has had a country music format since 1977. I told the radio station about Mattie and our upcoming Walk. To my surprise, the radio station is donating two tickets to the upcoming Kenny Chesney concert to our Walk raffle.


For those of you unfamiliar with Kenny Chesney, he is an American country music singer and songwriter. Chesney has recorded 15 albums, 14 of which have been certified gold or higher by the RIAA. He has also produced more than 30 Top Ten singles on the U.S. Billboard Hot Country Songs charts, 20 of which climbed to the top of the charts. Over the life of his career, Chesney has been honored with numerous awards from the Academy of Country Music (ACM), Country Music Association (CMA), American Music Awards (AMA), Country Music Television (CMT), Billboard Music Awards (BMA), People's Choice Awards (PCA), and the French Country Music Awards (FCMA). Chesney's most recent charity work includes working with the V Foundation. Founded by the late Jim Valvano, the V Foundation is a charitable organization dedicated to saving lives by helping to find a cure for cancer.

I attached three links to recent Kenny Chesney songs for you. To me each song has a powerful message, and the videos seem to drive that message home. I hope you enjoy these! All I can say is that the Mattie Miracle Cancer Foundation is TRULY grateful to WMZQ for their support!

The Boys of Fall
http://www.youtube.com/watch?v=AlXDo5WhQXI

Don't Blink
http://www.youtube.com/watch?v=4f0p5KqdU9U

There Goes My Life
http://www.youtube.com/watch?v=xP-Sxfntdb4&NR=1

Thursday, March 10, 2011

Thursday, March 10, 2011

Tonight's picture was taken in April of 2004. We had taken Mattie to the National Zoo, and he was checking out some of the animals. Clearly Mattie had me laughing and Peter captured that special moment in time.

Quote of the day: Men can counsel and speak comfort to that grief which they themselves not feel. ~
William Shakespeare


I am beginning to think Shakespeare was absolutely brilliant when it came to understanding the complexities of grief. All of his grief quotes were very poignant. Just like the one I posted tonight. What captures my attention about this quote is that it tells us outright that for those of us grieving there is no comfort to be had. Only those not feeling the grief themselves can offer help and seek comfort in the loss. I gather because it is a loss on a more cognitive level rather than an emotional one. It is a loss that may not impact one's life completely.

I received several lovely emails today from friends who continue to read the blog. The irony is I have no idea who reads the blog each and every day. I know I have my core group of loyal readers, but other than that, I write, and wonder sometimes who finds what I write interesting. Or interesting enough to come back often?! It is in a similar fashion when I open our Foundation's PO Box. On a regular basis we have someone who contributes financially to our Foundation, and yet I don't know this person and wonder how he/she (since I only have this person's first initial) is connected to us. I would personally love to thank this person and chat with him or her, but it does make me pause and realize that some people are connected with us through our story, which has been told each and every day on this blog for the last two years and counting.

I distinctly recall when Mattie was battling cancer, I had to shut out a lot of things. I also had to close off to hearing what people were sometimes telling me. It is hard to hear others complain about their lives when you are living in a PICU and also worried whether your son will die. Life and death seem to take priority over trivial day to day matters in my mind. Now that Mattie has died, I clearly do not live with the same life and death traumas on a minute by minute basis. Yet for Peter and I, life is filled with many existential crises, and just by the sheer magnitude of Mattie's loss. I find there are times when I can't engage in real world dialogue. I can't process trivial compliants, and I most definitely can't absorb how other people's children are doing, accomplishing, and growing. I am sure that sounds very harsh and uncaring. I do not always feel this way either, but during the times I do, I find that I have to forgive myself for feeling the way that I do, and accept it. I try not to lash out at anyone, I typically just remove myself from conversations or prevent myself from having them.


For those of you who write to me, thank you! Your words and continual appreciation for the blog mean a great deal to me. I would like to end tonight's posting with one of the messages I received today. This email was from Anne. Anne is a loyal read and her daughter was in Mattie's kindergarten class. Anne wrote, "I just read yesterday's blog entry (Tuesday) where you talk about your opportunity to talk to doctors about better ways to relate to patients/families. You also expressed concern about whether it will make a difference. I ABSOLUTELY think it will . . .if you approach it the right way. I have no idea what that right way is mind you. But you are such a powerful speaker and you have such a powerful message, it is sure to make a difference. I know you did not ask my opinion, but I am going to throw it out there . . . ask the doctors you are close to (e.g. Kristen) how she thinks you could get through to the doctors and what are their complaints about parents/patients. With that information, you will be better able to talk TO the doctors rather than talk AT them. This may make a difference. If you acknowledge their issues (even briefly), they may be more receptive to acknowledge yours. I read the blog entry and felt compelled to write to you. Even if you reach one doctor, who is more compassionate to one family, you helped that one family. . . and there is no way your story, your passion will not reach many more doctors. I am so excited for you to have this opportunity. This seems so big to me! Will it be video-taped? If so (and you would need to get all of the copyright issues resolved first) you could put it on the website to reach that many more people...just a thought."

Wednesday, March 9, 2011

Wednesday, March 9, 2011

This picture was taken several days after Mattie's second birthday party (April of 2004). For each birthday party that Mattie had at our home, I would cover the front hallway wall with paper, mazes, and other activities for the kids to color and draw upon. Mattie loved the fact that he could decorate the wall and felt extra special that such an activity occurred on his birthday. As you can see in this picture, Peter got home from work that night, and as soon as Mattie saw him, he engaged Peter at his coloring wall.


Quote of the day: No one ever told me that grief felt so like fear. ~ C.S. Lewis


I chose to spend the day by myself. I really wasn't in the talking mood, I did not feel like listening or absorbing what anyone else had to say to me, and I most definitely felt the need to retreat.

Despite how I was feeling, I accomplished a lot. I went for a three mile walk and then I spent the rest of the day reaching out to other organizations and businesses that may be interested in our Foundation's missions and activities.

As many of our Walk attendees know from past years, we have an impressive raffle, filled with incredible items, at the Walk. Our raffle chair is my friend Carolyn, whom I met at Mattie's preschool. Carolyn's daughter and Mattie were in the same classroom together, the year that Mattie had Margaret as his teacher. I am working with Carolyn this year to generate items for the raffle. The whole soliciting experience is not something that I like doing, yet I have found after doing a couple, it gets easier to ask for things.

Needless to say, I spent a good portion of the day in front of the computer. At times I get frustrated because I find the pediatric cancer community, which is comprised of associations and other private entities to be petty. Petty in the sense these entities believe they have a certain niche and turf, and at times I feel that their turf is more important than the issue at hand. Our ultimate goal should be to help children and families with cancer, yet behind the scenes so much more is going on. So I would say aspects of this work can be disillusioning. Mainly because I would like to believe, call it idealistic, that people are in this field because they have the passion, a desire, or a calling to help. When I realize this isn't always the case, this upsets me. There is no unified and powerful voice in the pediatric cancer community. Because of this, I think this helps to explain why NO new drugs for pediatric cancer have been FDA approved in over 20 years. It also explains a host of other problems.  When I combine being disillusioned with reflecting on Mattie's loss everything becomes overwhelming.

In the midst of all these realizations today, I was able to reconnect with several of the women I networked with yesterday at the Georgetown Parent Advisory Board meeting. Many of these women want to support our Foundation Walk, and I appreciate these connections and the opportunity to learn from many of them on how to run a successful Foundation.

Tuesday, March 8, 2011

Tuesday, March 8, 2011 -- Mattie died 78 weeks ago today.

Tonight's photo was taken in December of 2003. As some of my faithful readers may remember, we took Mattie to Lowe's to try to take his picture by the Christmas trees and poinsettias. I was trying to capture a photo to put on our family Christmas card that year and because Mattie wouldn't sit still for a picture, I figured the next best thing was to put him in a moving shopping cart, try to distract him, and then snap a picture. As you can see from this picture, Mattie was absorbed by all the lights and Christmas things all around him. Though this WAS NOT the picture I placed on the front of our card, there was something quite sweet and innocent about this photo. It seemed to capture Mattie's intrigue and fascination with the world around him.


Quote of the day: To touch a sore is to renew one's grief.  ~ Terence (Ancient Roman Playwright)

It is funny how my day can start out relatively fine and by the end of the day, my world seems to be crashing down all around me. It is midnight now, and I am just sitting down to write today's blog. I began the day by walking over three miles with Ann. The walking routine is very important to me.  I recall last year at our first Foundation Walk, I walked around the track with Maya. Maya is Mattie's age and the only friend he made at Georgetown who was his age. I noticed after I did one lap around the track with Maya, I felt like I was going to collapse. Everything hurt and I was out of breath. That was a realization to me that physically I had lost a lot during Mattie's battle with cancer. After all, living in a hospital for over a year caused me to have a rather sedentary lifestyle and that along with managing day after day with intense stress and VERY little sleep produced a very toxic physical combination. So this year, I have made a conscious effort to regain strength and stamina.

Peter and I had the opportunity to have lunch today with our friend and fellow board member, Tamra. We chatted with Tamra about the legislative direction the Foundation is taking and she shared many valuable insights with us on next steps and other connections. Tamra was commenting to us on how we are making a difference, and her comments struck me emotionally. Which then triggered my memory to the last time I saw Tamra at the Hospital. She came to bring me hot tea the day before Mattie died. Tamra entered the room, could see how horrific the scene was, gave me the tea, hugged me, and turned right around. I remember that day vividly because NO words were needed and NO words could have possibly been of comfort. She sensed that and her sensitivity toward me on September 7, 2009, will not be forgotten.

As most of my readers know, Tuesdays are challenging days for me. Today marks the 78th week Mattie has been gone from our lives. Therefore, returning to Georgetown Hospital for a parent advisory board meeting today was NOT at all easy. However, all board meetings are on a Tuesday.

Tonight's meeting lasted four and a half hours. It was a joint meeting between two parent advisory boards, the pediatric board and the Neonatal Intensive Care board. I had the chance tonight to tell both boards about the Mattie Miracle Cancer Foundation walk on May 22, and I was so pleased to see how receptive the parent members were and how they want to help promote our event. I explained that the walk proceeds this year would be given to the childlife department at Georgetown University Hospital to hire a part time specialist to assist children and their families during scan and procedure days. Days in which a family learns if their child's cancer treatment is working or whether the cancer has progressed. The parents see the great need for such psychosocial support, and I was happy to hear their feedback! Peter and I feel very passionate about directing funds to childlife, knowing that Linda (Mattie's childlife specialist) will effectively utilize these funds to help hundreds of children psychosocially each and every day.

As the evening wore on however, I became disillusioned over the discussion of family centered care. This seems to be the popular language or lingo used by many hospitals now. Basically this is what family centered care means (according to the Institute for Patient and Family Centered Care).........

Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care.



Patient- and family-centered practitioners recognize the vital role that families play in ensuring the health and well-being of infants, children, adolescents, and family members of all ages. They acknowledge that emotional, social, and developmental support are integral components of health care. They promote the health and well-being of individuals and families and restore dignity and control to them.

Patient- and family-centered care is an approach to health care that shapes policies, programs, facility design, and staff day-to-day interactions. It leads to better health outcomes and wiser allocation of resources, and greater patient and family satisfaction.

In theory I think hospitals like to throw around this terminology but having lived within the hospital setting for over a year, I am very very certain that most medical doctors do not embrace this concept. They may say they do in theory, but their actions speak volumes. Of course, Mattie had several doctors who I would not lump into this mix, they understood and valued our participation in Mattie's care and also knew the impact his cancer was having on us. I wish I could say that was true about medical doctors across the board but it simply isn't. I have been invited on May 20 (two days before the Foundation Walk) to speak to hundreds of doctors at their medical ground rounds to testify about the psychosocial nature of cancer care, to share Mattie's story, and to provide these doctors with take a ways about what they could do differently as they interact with pediatric patients and their families. On one hand this is an exciting opportunity and on the other hand I feel that the training of physicians is in need of a huge overhaul. Which makes me wonder what my testimonial will actually accomplish. Who knows, maybe tomorrow I will feel differently about this.

I had the opportunity to talk with two other women tonight who lost their children as well. In a way, we are like the bereavement trio, since we are always advocating for better end of life care for children at the hospital. I listened to their stories tonight about how their children died. Needless to say, as I was leaving the hospital at 10:30pm, I was on emotional overload. In fact, as I was walking down the desolate hallway at the Hospital, I had a flashback on living in the hospital and traveling these hallways at all hours of the day with Mattie. By the time I got to my car in the parking lot, I felt very unhappy and that feeling just continued as I got home.

As I entered my home tonight through our deck, I could hear Mattie's wind chimes (a birthday present Mattie gave me!) blowing in the wind. In a way, despite feeling alone in my thoughts and feelings, he was trying to send a message to me that I wasn't really alone. That he was here right along side me, that he understood my sadness, and wanted me to know he loved me. So Mattie's chimes tonight not only helped me remember him, but they served as a reminder of our love for each other. Mattie never liked to see me upset and just as I advocated for him, he in his own cute way would advocate for me. So in typical Mattie fashion he made his presence known tonight.

I would like to end tonight's posting with two messages. The first message is from our friend and Mattie's oncologist. A woman who truly gets family centered care. Kristen wrote, "Just thinking of you guys tonight. I hope you are well or at least as well as can be. Let's plan some time for a walk in the next month. Thinking of you this Tuesday and everyday."

The second message is from my friend and colleague, Nancy. Nancy wrote, "Mom's piece was perfect in the sense she conveyed each of your experiences so clearly and with much feeling. The struggle with loss is a daunting challenge to living a disrupted life. The loss of a child is never easily explained and definitely not understood by us. I think this is the point where emotion and the impact of the loss is the only explanation we have left. Each time I read a piece like Mom's, I want to wrap my grandchildren in my arms and give them an extra squeeze. Peter and you clearly loved being Mattie's Mom and Dad! It comes through in all you did for him healthy and during his battle with death. You do him great honor now with the Foundation and the blog. Your story continues to touch all who have become familiar with it. I know that today is where you try to make sense of your loss. My thoughts are with you today as you handle another Tuesday without Mattie."

Monday, March 7, 2011

Monday, March 7, 2011

Tonight's picture was taken in December of 2003. As you can see Mattie was in the tub FULLY clothed. That may look odd, but Mattie loved playing in the tub this way. I am not sure if he liked the cold feeling of the tub on his body or simply being confined to this little play space. Either case, he would always venture to the tub. He would drag all sorts of toys into the tub, from rubber lizards and bugs to hotwheel cars! The tub could instantly be transformed from a zoo to a racing track using Mattie's imagination.

Quote of the day: When we come into the present, we begin to feel the life around us again, but we also encounter whatever we have been avoiding. We must have the courage to face whatever is present / our pain, our desires, our grief, our loss, our secret hopes our love / everything that moves us most deeply. ~ Jack Kornfield

I started the day by walking close to four miles in the sunshine. It was nice to be outside considering how horrific the weather was yesterday. I would say the pervasive feeling of sadness is still upon me, but walking and then going to get a manicure and pedicure helped. Tatiana is the lady who does my nails. She does this by day but is studying at Georgetown University to become a physicians assistant. So we compare hospital experiences with each other all the time. Today I told her about Mattie's Foundation, the  upcoming Walk, and our Foundation's mission. Typically I do not do this with people I don't know well, but as Peter so aptly stated yesterday, we are becoming salespeople, or perhaps I would say we are evolving into spokespeople for an important cause.

This afternoon, I went to visit Ann's mom, Mary, at her assisted living facility. Mary's roommate died on Saturday, and I wanted to check in with her to see how she was handling this change. Even though Mary's roommate was cognitively impaired, Mary had grown fond of her, and misses her presence now in the room.

I received a beautiful email today from my mom. I included it below because to me the message is very poignant. She talks about death being challenging, but how unexpected and untimely deaths seem much harder to live with and accept. My mom also captures what it is like for her to have to watch Peter and I survive this ordeal. The title of her message to me was "nuclear winter of the heart." To me this was the perfect title and illustration of what has happened to our hearts with Mattie's death. I couldn't have said it better myself, and on days like today where I seem at a loss for what to write, I appreciate my mom stepping in and giving you her perspective.

___________________________________________
Nuclear Winter of the Heart --- By Virginia R. Sardi

Life is a beautiful gift from God, but in the end, all things die and so must each and every one of us. It is a journey to be freely used, a blank screen upon which we can create incredible wonders that inspire or lead lives of self-indulgence and waste. But we learn early on that we are not fully in control of our own destinies or what happens along the way. How we respond to every crisis that arises is what either builds character or destroys it. One of the saddest experiences in life is to see the decline of a loved one, healthy one minute and disabled the next, facing a future of diminished possibilities. Having been a care-giver for several years to my mother who suffered a devastating stroke that left her paralyzed from the neck down except for the use of her right arm, I can remember the passion that went into our efforts to give her a good quality of life with what was left of her body and mind. Despite the trauma to her brain and the disorientation she experienced, my mother did have spirit and remained sharp as a tack until she died. But, she needed an advocate to see that her needs were fully met. Looking back, I would do it all again because it made a difference in how she lived the remaining years of her life. No one could have made her feel that she was still loved and looked out for her best interests than her own family. I overcame the sadness of losing her by acknowledging that the natural order of life is for our parents to die before us rationalizing that it would be far more painful for her if the situation was reversed. Still, there is not a day goes by that I do not miss her and she died seventeen years ago.

Nothing in life, including the loss of my parents, prepared me for the heartbreaking loss of Mattie. Watching the drama of cancer and death invade my daughter’s happy family and suck out the life of my precious six year old was painfully unbearable. Healthy and energetic one minute, then disabled and dying the next! I am stuck somewhere in time not being able to detach the future from the past, blending the two and synthesizing both into a new reality that has made me a different person. Although there is no outward evidence of any physical difference that would reveal the depth of the change, it is still profound. From this new perspective it is easy to empathize with the pain and suffering Vicki and Peter contend with every day when they face a future where they will never see him smile again, never hear his sparkling laugh, never hold his hand and sadly never see the promise of the man he might have become. It is an incomparable heartache for them that make them reluctant survivors of a nuclear winter of the heart!
_______________________________________

Sunday, March 6, 2011

Sunday, March 6, 2011

Tonight's picture was taken in December of 2003. We took Mattie to Los Angeles to visit my parents, and while there we introduced him to Griffith Park. As you can see, Mattie was riding a horse and had a big smile on his face. Mattie was a bit timid of the horses at first, but Peter agreed to walk right beside Mattie, and with that Mattie agreed to the adventure. Mattie loved Griffith Park, and each time we visited Los Angeles, this was one of the destinations he always requested. 

Quote of the day: Sorrows cannot all be explained away in a life truly lived, grief and loss accumulate like possessions. ~ Stefan Kanfer


I agree with tonight's quote. Sorrows CAN NOT all be explained away, some sorrows simply make NO sense. The death of Mattie is one of these unexplained truths. As I write tonight's blog, Peter is listening to the music from Les Miserables. I haven't heard this music in a long time, but as soon as I heard it, I knew immediately what he was listening to. The music is stirring, and as many Les Mis fans know the character of Fantine dies in the first act. Fantine is a mother with a young child, who expresses her worries regarding who will care for her daughter once she dies. Fantine sings the haunting song, I Dreamed a Dream. Somehow the following lyrics captured our attention tonight..................................

"I dreamed a dream in time gone by
When hope was high and life worth living
I dreamed that love would never die
I dreamed that God would be forgiving"

Before we experienced a traumatic loss, I would say Peter and I both lived a very hopeful life, a life where with love anything seemed possible, and that God was forgiving. After Mattie's death, I would have to say our perspectives on life, love, and God have been impacted negatively. How to come to peace with what we have seen, experienced, and survived appears to be a lifetime endeavor!


It was pouring today in Washington, DC, and it certainly did not motivate me to want to leave home. We did venture out and went to Home Depot, because I want to take on several projects and I like wandering around the aisles getting ideas. We walked out into the garden area of Home Depot, and as soon as the doors opened up and we walked in and amongst the greenery, we were stunned by what we were hearing. All of a sudden Abba's Dancing Queen started playing over the loud speaker. Peter and I both stopped in our tracks, because we both immediately thought of Mattie. As my faithful readers know, Mattie loved Abba music and most of his physical therapy sessions on the fifth floor of the Hospital involved trying to walk, sing, and move to Abba music. I assure you we were quite a scene on therapy days, because Mattie always traveled with an entourage. In fact, I remember one day in particular in which we were singing and Mattie was migrating down the hallway with his walker and wheelchair. People were literally coming out of their offices to see where the music was blaring from! When they saw Mattie and his heroic efforts trying to move and walk, smiles came over their faces. The power of music and the beauty of Mattie's face and motivation together were over powering forces to witness. It is amazing how a song can take you back in time.

We spent the rest of the day at home, trying to regroup emotionally from the weekend. But Peter could see I was in a mood, and at times sad. It is my hope to see sun tomorrow and to be able to walk. Tomorrow is another day, and with that I take it one day at a time.

Saturay, March 5, 2011

Saturday, March 5, 2011

Tonight's picture was taken in December of 2003, Mattie was a year and a half old. Peter and I took Mattie to Los Angeles to visit my parents. In my parents backyard, they were growing orange, lemon, and grapefruit trees. Mattie absolutely loved the notion of picking fruit off of the trees, and as you can see in this picture, Mattie picked a wonderful grapefruit and was bringing it back to me. After he picked several fruits, he then sat down by the basket and sorted each one by color. Mattie's love for nature, growing, and cultivating things occurred at an early age, and we always encouraged him to participate in all the activities and chores we took on around the house. He did not view these things as chores, instead he viewed them as activities we would all do together. Empowering children to take on responsibiity at an early age is something that I always felt was crucial, and this enabled Mattie to see that our home belonged to all three of us, and therefore all three of us were responsible for caring for it.


Quote of the day: Heavy hearts, like heavy clouds in the sky, are best relieved by the letting of a little water. ~ Antoine Rivarol



Peter and I spent the day with Ann and her family. When Ann’s husband, Bob, goes out of town, we try to help her manage her children’s activities on the weekend. Ann’s cousins are visiting, so we had the time to connect with them today.

Ann and Peter ran around most of the day, and I stayed at her house and was the point person there. During the day, I had the opportunity to play board games with the children (and I learned that monopoly has changed quite a bit from when I was growing up….. it now involves credit cards and millions of dollars in transactions). In the afternoon, as it got warmer out, Abigail (Ann’s youngest) and I went outside.

Some of my faithful readers may remember that Abigail likes to climb trees. Though we haven’t been outside all winter, we returned back to tree climbing today. An activity we started with each other last spring. The funny part is Abigail remembered the story we created last spring while tree climbing. This story involves dogs named Little Jack and Big Red. To my surprise we picked up where we left off story wise today.

This means several things to me. Abigail enjoys this type of imaginative and creative play and has connected our time at the tree with building upon “our” story. I appreciate the trust and responsibility Ann gives me, and yet I also realize that being around a family and in a neighborhood filled with other children reminds me of Mattie’s loss on a very profound level.

As I say often, losing Mattie has absolutely impacted every aspect of our lives. Naturally Peter and I lost our identity as parents, we lost our weekend identity (which involved uniting as a family and spending time with Mattie), but we also lost our ability to connect with friends and those who have families. I am sure from an outsider’s perspective you may be saying… how could that be? Friends are friends! It is true, but friends are usually united by commonalities. Our friends became our friends because we were united by the simple fact that we were all raising children. So what happens when you lose a child, and that commonality is gone? Well the answer is, it is a STRUGGLE.

In addition, to every other emotion we were balancing today, we learned that Mary’s (Ann’s mom) roommate at the assisted living facility died today. I have grown very fond of Mary’s roommate, Janet. Though she suffered from Alzheimer’s disease, you could tell she must have been a very honest, hard working, and loving lady at one time. Typically I visit Mary when I am at Ann’s house, but Ann did not want me to visit today because Janet was experiencing what I have come to call, “the death rattle.” Like Mattie, Janet’s lungs were filling with fluid and the sound one makes while trying to breathe through all this fluid is memorable and frightening. Part of me understood what Ann was trying to do, which was to spare me hearing that sound and sparing me from experiencing yet another death. I suppose what I have learned is that death doesn’t come or look the same for all of us.

I watched Ann’s father die, and heard about Janet’s death. Both died relatively peacefully, thankfully. However, hearing about death reminds me of Mattie’s. Mattie not only suffered through cancer, but his death was horrific. It is not only a mom’s personal recollection, it is a fact. I was surrounded by medical professionals who were crying and also besides themselves. Mattie did not die naturally. He was hooked up to IV pain pumps, but that wasn’t cutting the pain. He was screaming between infusions of pain meds. Since the pumps weren’t working to alleviate the pain from the cancer, Mattie was also given additional dosages of pain meds through syringes. Syringes were given almost every 2 minutes toward the end. Mattie’s bed looked like a land mine, filled with empty syringes everywhere! However, after six intense hours we had to induce a coma in Mattie using propofol, because he simply did not want to die and leave us. In my mind, I will always recall his death. Saying goodbye to Mattie was hard enough, but watching him die in traumatic pain and gasping for air was a torture I wouldn’t wish upon anyone. When I see and hear about a peaceful death, it upsets me, because this was something that Mattie most definitely did not have. I do not like admitting my feelings about death or that I feel resentful regarding peaceful deaths, but I do. There is anger I have from Mattie’s death that is fully entrenched within me and which I have yet to work through.

I also knew that tonight was Mattie's school's annual gala/auction. Obviously I know parents who we knew would be in attendance. Parents who still have their children and whose world hasn't been rocked by the death of a child. It is a frustrating feeling, it is a stressful feeling, and mostly it is a feeling of anger and at times bitterness that unfolds within me, because life goes on for everyone else but not for Peter and I.