Saturday, October 20, 2012

Saturday, October 20, 2012

Tonight's picture was taken in October of 2002. Mattie was six months old, and his first Halloween was approaching. I remember taking this picture because I literally placed both the pumpkin and Mattie in the chair together, and as soon as I did, Mattie reached for the pumpkin. I believe this is my first time posting this picture to the blog, because I only came across it weeks ago.



Quote of the day: The last of the human freedoms is to choose one's attitudes. ~ Viktor Frankl


Viktor Frankl was a gifted psychotherapist who created and defined the field of existential psychology. He was a concentration camp survivor and his experience living in captivity and observing how this impacted the human spirit greatly influenced his theory and work. When I learned about Frankl in graduate school, I was immediately drawn to his depth and his perspective which is that our inner conflicts arise when we confront the givens of existence (eg: death, freedom, responsibility, and isolation). Which in essence means that we ALL have conflicts and instead of them being pathological, they need to be understood as part of being human. Of course how we deal with these conflicts may not always be in our best interest.

Weekends tend to be challenging for Peter and I. Yes we are three years into the loss of Mattie, and yes we are still waffling through the weekends. However, it felt as if we chose our "attitude" today. It could have gone either way in the morning, but by mid-day we had a plan. I went with Peter for the first time to the golf driving range. Peter loves golf, I on the other hand never played it. Other than in miniature form! Before Mattie was born, Peter was a business consultant and he played a lot of golf with clients, his company, and in tournaments. However, when Mattie came along and Peter changed companies, his chances to play golf dwindled. With Mattie's death, this is a sport Peter has re-engaged in. The beauty about golf from my perspective is it is a sport you can play throughout your life and it also takes place typically in a lovely outdoor setting. So today Peter taught me how to hold a golf club and to swing. It looks a whole lot easier than it actually is! There is nothing intuitive about keeping your left arm straight as you swing, and don't get me started about the actual stance of bending your knees. Nonetheless we had a good time together both on the range and putting green. Peter is a good teacher and watching him hit golf balls shows me that he not only likes to play but he is a good player. He just makes it look easy.

 

After being outdoors, we went out to lunch together at a restaurant I have introduced Peter too. My friend Karen makes fun of me because I tend to love restaurants whose names start with the letter C. I have no idea why this is the case, but wouldn't you know it the name of today's restaurant also started with the letter C. Go figure! Choosing one's attitude as Frankl implies is one of our human freedoms, and yet it can be so daunting to allow one's self to have a positive or upbeat attitude for various reasons. Our reason centers around the death of Mattie. For whatever the reason, I am glad we had some nice diversions together today.  

Friday, October 19, 2012

Friday, October 19, 2012

Tonight's picture was taken in October of 2007. Our October weekend adventures with Mattie usually meant going to a fall festival. We practically did every one of them in the area. These fall festival pictures of Mattie always make me laugh. Because when Mattie first entered preschool he was scared to death of any kind of slide. Yet you can see in a short period of time Mattie made huge progress. Peter coaxed Mattie and provided initial assistance on his first hay slide experience, but then Mattie got the hang of it, and had no problem going alone. Despite going alone, I always had Peter walk up to the top with Mattie and I was always waiting on the bottom. I was very protective of Mattie which is ironic, because no matter how diligent I was, there was one thing I couldn't protect him against.  


Quote of the day: It is always the simple that produces the marvelous. ~ Amelia Barr

For the past several days I have been very focused on Foundation work, board work at the Hospital, and even licensure board items. With all these items pulling at me, it is easy to get overwhelmed. But I have managed quite well. One of the activities the Foundation is planning in February is a psychosocial think tank. We are funding 10 mental health professionals from around the Country to attend this think tank held at a National conference in California. The think tank is designed to pull leaders from the psychosocial field together to create and eventually implement a psychosocial standard of care for childhood cancer. I plug away each day, with this vital vision in mind. However, as I have begun to contact the 10 committed professionals this week, I am getting incredible feedback from them of great thanks, appreciation, and admiration of me. I haven't given it much thought, but from their perspective it is novel and refreshing to find someone in the community who runs a Foundation to be such a strong advocate for the work of psycho-oncologists. Typically in the field of childhood cancer, the mantra of many organizations and foundations is to raise money for research! Needless to say the insights from our think tank professionals and their kind words have been marvelous for me. As tonight quote points out the SIMPLE (in this case kind words) produces the MARVELOUS!  

This afternoon, I had the opportunity to spend some time with my friend Mary, who lives in an assisted living facility. I try to visit Mary at least once a week, or more, depending upon my schedule. It is hard to see Mary's decline, especially when I think about what she was able to do back in 2009. This was only three years ago. A lot can happen in three years! Mary is basically paralyzed, unable to walk, feed herself, dress herself, read, and the list goes on. However, one of the most profound changes this year is her inability to talk. Yet even without words we manage. Prior to visiting Mary today, I went to visit the 25 year old I wrote about last week. Some of my readers may recall that Mary's former aide has a 25 year old nephew who was in a swimming pool accident. He hit his head in the pool, and this caused him to become paralyzed from the neck down. Because I am so found of Mary's former aide, I went to visit her nephew today and I also met this young man's mom. The mom was almost shocked that someone she did not know would visit her and care about her son. But she invited me to come visit with her any day.

After this visit I then went to visit Catherine. Catherine lives in the room right next door to Mary. I spent a half an hour with Catherine, and just before I left she told me that my presence made her day. Again the SIMPLE produces the MARVELOUS! After all, I brought no gifts, I provided no entertainment, but what I did provide was my time, my listening ear, and friendship. As one of my friends and colleagues reminded me this week..... truly caring and listening to a friend are rare gifts. So maybe in the end these things I provided to Catherine may be deemed by some to be un"simple!" But to me they come naturally and at the end of the day, knowing I provided support to someone who needed it makes me feel better about myself.

Thursday, October 18, 2012

Thursday, October 18, 2012

Tonight's picture was taken in October of 2007, nine months before Mattie was diagnosed with cancer. That weekend we took Mattie to Butler's Orchard in Maryland. This was one of our favorite farms to take Mattie to because they took people on a hayride into the pumpkin patches, where children could literally pick pumpkins right off the vine. As you can see, Mattie picked this pumpkin, and actually several others that day. I am not sure what he loved more the pumpkins, the wheelbarrows, or the hayride on a tractor.  


Quote of the day: Happiness is when what you think, what you say, and what you do are in harmony. ~ Mahatma Gandhi


Gandhi's quote intrigues me because his definition of happiness is something that I can freely accept even in my state of grief. When I reflect on the harmony among what I think, say, and do this makes a great deal of sense to me, rather than the typical definition of happiness, which I have trouble accepting and swallowing. Typically when we think of happiness (going right to Webster's Dictionary) it is defined as "a state of well-being and contentment, joy, or a pleasurable or satisfying experience."

Joy and happiness are NOT words I like anymore. In fact it is very hard after the death of a child to allow these feelings inside. A pervasive sense of guilt comes upon me when I think of them, and chances are if you have used them with me in conversation then you know I have pushed back at you. Do I think Mattie wants Peter and I to be happy? Do I think he would be happy knowing how much we miss him and how profoundly changed our lives are? I don't know, but I do suspect that on September 8, 2009, Mattie did not want to die. He understood on some level that leaving us was unnatural. As his doctor told me, she had to give Mattie propofol to help him die because he did not want to let go. The strength of a seven year old, fighting for his life, is an image that will remain with me forever. Once you heard your child flat line in your arms, finding happiness and joy in life seem impossible.  

As the Foundation activities are taking off, my days are becoming busier. The mental power of balancing activities and tasks has its own challenges. However, in the midst of working, I was greeted by our first shipment of candy for the Foundation's Post-Halloween Candy drive. When I opened the box, this was a sight for sore eyes. Being a chocolate lover, it takes great discipline not to eat it myself. But I am happy to report that no chocolate was lost last year from my consumption. Much thanks Maria for this wonderful delivery. A delivery that will make families of hospitalized children VERY happy!


 

Wednesday, October 17, 2012

Wednesday, October 17, 2012

Tonight's picture was taken in February of 2009. The first thing you probably see was Mattie's goofy face. In the midst of pain, fear, treatment, and chaos, we did have our funny moments, and this was indeed one of them. Mattie was creating a house out of popsicle sticks and had his trusty glue gun with him! In fact, prior to Mattie I never used a glue gun in my life. It was through Mattie, that I got my excellent glue gun training. I learned from the master.





Quote of the day: Behold the turtle. He makes progress only when he sticks his neck out. ~ James Bryant Conant


This is a cute quote, but on a day like today, it is so meaningful. My friend Heidi connected me with a friend of hers who is a professional fundraiser. I am not a fundraiser by any stretch of the imagination, and asking for money is not my strong suit. So in essence having to learn to do this is like a turtle coming out of its shell! Nonetheless, for the good of the Foundation, I have been learning to stick my neck out, because without funds, I know we would be unable to support the psychosocial needs of children and their families with cancer.

Peter and I met with Jen today and chatted about our Foundation's Walk. As most of my readers know, we host a Foundation Walk each May. This tradition was started by Team Mattie, a group of committed people who met our every care need when Mattie was battling cancer, and even months after his death. To me the Walk is so symbolic of this amazing group of people, people who banded together to plan a fun event for Mattie. An event where he could see how many people loved and supported him. For three years now, after Mattie's death, we have continued the Walk tradition. Yet with each subsequent Walk, I realize that our attendance dwindles. Fortunately the attendance dwindles, but not the funding. But attendance is crucial to generate awareness, energy behind the cause, and of course to continue to build our support network. So with that said, we are now looking into having a 5K walk/run and family festival in May. Big changes are afoot and right now I have more questions and logistical concerns than anything else. Stay tuned as plans unfold.

 

I wanted to share this picture with you tonight. I took it this morning. I have noticed the past several days that Patches spends her time on Mattie's pine chest. In fact, if you look closely you can see "pinkie" and "blue boy" right next to her head. These two wooden characters were used many a time during Mattie's play therapy sessions in the Hospital. Blue Boy was good and Pinkie was a rebel. These characters helped Mattie communicate how he was feeling and the play scenarios he concocted were incredible. Yet I find it fascinating that Patches would choose to sit on Mattie's wooden boat and wooden chest. I can't imagine this was comfortable. Patches actually spends a great deal of time in Mattie's room and I firmly believe she grieves in her own way.
 

Tuesday, October 16, 2012

Tuesday, October 16, 2012 -- Mattie died 162 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie went to his buddy Campbell's house and as you can see enjoyed a wonderful Halloween cookie. Mattie met Campbell in kindergarten and they became very close friends. Watching Mattie and Campbell play together was always a treat because they both loved to build and create, and had wonderful imaginations. Their imaginative play was a sight to see. A playdate for them was always active and never involved the TV or electronics. In many ways their type of play was very unique and rare to see in today's day and age, where electronic stimulation has almost replaced the imagination that we had to have as children growing up. I will always remember the play and friendship between this duo fondly.



Quote of the day: When we love, we always strive to become better than we are. When we strive to become better than we are, everything around us becomes better too. ~ Paulo Cohelo


Tonight's quote seems quite apropo considering the hospital meeting I just attended. At the hospital, I serve on a parent advisory board. This is my third year on this board and I joined it in hopes of making a difference in the lives of children and families at the hospital. Keep in mind that I am the only parent on the board who lost a child, and I do think this impacts my thoughts, feelings, and behaviors. At times it is hard knowing that Mattie did not survive, and I am the only bereaved parent in this group. Yet the members of the board are wonderful and committed individuals who are passionate about helping and making a difference. Which is a great motivator for me! This brings me to tonight's quote. Our board is guided by love and compassion. We unite together every month with the goal of making the lives better for those in crisis, and though this is a noble cause, I am well aware of the fact that money talks. Some parent boards raise money for the hospital and these boards get more attention, notice, and respect than let's say the board I am on. What a screwed up society we are, a society where money talks louder almost than good deeds. It is vital when confronted with skewed priorities (individual versus a system), that we stay committed to our convictions. It is easy to get down and upset by this lack of respect and value we are given for our service, but in the end we must see that our vision is based out of love, and love will inspire us to make the system better for children and parents who have to use it.

When I entered the hospital tonight I was literally hit with an incredible antiseptic smell. Naturally I have been to the hospital all summer long, but it is ironic that tonight the smell absolutely hit me, or I should say brought me right back to July of 2008. I truly believe that grief is a sensory experience, it impacts our sight, hearing, touch, and smell. As tonight's experience illustrates, certain smells can evoke memories, and naturally not all memories are loving and happy. The smell triggered my memory of our times in the hospital, that was the first affront. Then the second affront was visual, I had a heightened awareness that I was walking down the stark white hallway of the hospital, a hallway I walked many times with Mattie. In essence, it was like reliving the battle all over again. I haven't had a reaction like this in quite some time, so my feelings caught me off guard. However, in tonight's meeting, Mattie's sedation nurse angel, Debbi, was there, and some how her presence helped in ways I can't quite describe.

Some of you know I have been working on a craft project in the midst of everything else I am doing. I took on this project because I just wanted to. Though these are fall colors, they are most definitely Mattie colors. Basically I bought a beautiful ceramic pumpkin shaped bowl, filled it with Styrofoam, and designed a floral display with silk flowers, silk leaves, and orange gourds. I love sunflowers, so as you can see they are well represented here.

 

Monday, October 15, 2012

Monday, October 15, 2012

Tonight's picture was taken in October of 2008. Mattie was in the hallway of the pediatric units participating in a chemistry club experiment. The Georgetown University Chemistry Club came to entertain and educate the kids on Fridays, and Mattie looked forward to these visits. The Club's president at the time was named, Chris, and Mattie and Chris got along splendidly. As you can see, Mattie was wearing a sock on his hand, to protect it so that he could hold and play with this giant bubble made out of dry ice and bubble solution. Mattie's face showed his fascination with the entire process.


Quote of the day: What we achieve inwardly will change outer reality. ~ Plutarch

I do think how we are feeling inwardly greatly impacts our exterior reality. I am physically not feeling great today, and this most definitely impacted my whole outlook for the day. I worked away on Foundation items this morning and then midday took a break. I went to visit one of my favorite stores, AC Moore, and began a craft project. Not anything that really needed to be done, but sometimes having such diversions are helpful and necessary. Of course as I go into AC Moore, I realize there are so many things in the store that would have appealed to Mattie. As a mom you get used to shopping for your child, and when Mattie was alive, I typically always picked him up a little something if I was out and about. It just was a natural thing to do, because I was thinking of him and enjoyed seeing his reaction to different items. With his creativity, he always found multiple ways to use whatever I brought home for him. In a way, it takes great discipline to shop now, because a part of me wants to pick out a Mattie item. But then I realize there would be no point to this. However, even shopping is a reminder of the loss Peter and I have to contend with on a daily basis.

Another aspect that I see within myself is my hesitation to buy anything for myself. I remember having this feeling soon after Mattie died. But that feeling has been resurrected again. I think after Mattie died I was too stunned to do anything, but now before I buy something I begin to think.... what is the point? To some extent whatever I have stays with me, or I should say dies with me, since it is not something that Mattie can use or that will get passed down to him. In many ways, our family line ends with Peter and I, and this is a humbling and scary notion. We all like to think that we leave a generation behind to carry on the traditions of one's family, and the reality of Mattie's loss has huge implications for us. Which is why on some days I absolutely need to turn to flowers and crafts, these are beautiful diversions needed to help me refocus and re-engage with others and the world around. In essence these things allow me to feel as if I am contributing to something bigger than myself.   

 

Sunday, October 14, 2012

Sunday, October 14, 2012

Tonight's picture was taken in October of 2008. Mattie and his big buddy, Brandon, were in the Child Life Playroom at the Hospital. These two buddies were at least ten years apart in age, and yet they connected and helped each other in numerous ways. The structure sitting in front of them in this photo was a Mattie and Brandon creation. A creation made out of LOTS of popsicle sticks. Mattie was the ultimate builder. He could work with just about any material and always found a way to make it structurally sound. A real gift!


Quote of the day: Don't be content in your life just to do no wrong. Be prepared every day to try to do some good. ~ Nicholas Winton


On certain occasions I have the opportunity to see not only children who are Mattie's age (if he were alive today), but children who knew Mattie and were actually friends with him. This is a challenging position to be in, which is why I have talked to other moms who have also lost a child to cancer and asked them how they handle and feel about such a situation. Believe it or not, there is NO standard answer. Some of us feel good to see our child's friends, because they connect us to our loss, and others find this beyond overwhelming and sad. Of course there are also feelings that lie all along the continuum. I am not sure where I am with this, and frankly I think it depends on the day. Since I know my reaction could be different based on my own vulnerabilities, needs, and how I am feeling physically and emotionally.

This afternoon, I had the opportunity to see one of Mattie's closest friends, Zachary. Mattie and Zachary were practically inseparable in preschool, in fact, for them it was like friendship at first sight. They met on the first day of school, and were instantly drawn to each other. Over the two years they were in preschool together, Mattie and Zachary spent a great deal of time together after school. They spent so much time playing that I would say other than my own child, Zachary became a close second for me. I knew his highs and lows, his preferences, and his likes and dislikes. Yet Zachary and I haven't spent much time together naturally since Mattie died from cancer. Yet when I saw Zachary in a group setting today with other kids, I could just sense we related to each other. Words weren't necessary, it was just a camaraderie we share because of our times together. Others may not have felt it, or even observed it, but I sensed it immediately. I could see it based on his checking in with me and looking to me for approval as to what he was doing. 

This interaction really came at the right time in my life, because there are days and moments when I worry about forgetting that I was a mom. One's mind can play tricks on you in grief, and as more time goes by, I wonder if I ever really was a mom. Seeing Zachary today answered that doubt, because in his own subtle way (and unintentionally, which is the beauty of this) he reminded me that I was a mom, Mattie's mom, and we will always have a connection with each other because of their amazing bond.