Saturday, June 9, 2012

Saturday, June 9, 2012

Tonight's picture was taken in May of 2009, at the Mattie March. Pictured with Mattie was Tricia, one of Mattie's favorite HEM/ONC nurses. Tricia is not only a competent and capable nurse, but what makes her an outstanding nurse is her ability to connect with her patients and families, and her advocacy for her patients with doctors and other hospital personnel. There are many memories we have with Tricia, some memories are filled with antics, such as her chasing a fly around Mattie's hospital room and then pretending to eat it, and of course more serious and life altering moments such as when she told me Mattie was dying. When I look at this picture, it takes me back to the time when we thought Mattie's chemo treatments were ending, and that soon we would be working on rehabilitation. It was only two months after this picture was taken that we learned Mattie's situation was terminal.


Quote of the day: Beauty is not in the face; beauty is a light in the heart. ~ Kahil Gibran


The beauty of Tricia is that her career as a nurse is not just a job, but it is a life calling. When Mattie died on September 8, 2009, Tricia's responsibility for caring for Mattie and us technically ended. Yet here we are two and a half years later, and she is still an instrumental part of our lives. Tricia walked with us through Mattie's cancer battle, through his death (she was one of the nurses who assisted us the morning of Mattie's death, for it was Tricia, Debbi, and Katie who helped wash Mattie's body, put him in a body bag, and take him to the Hospital morgue -- things a parent will never forget), and now through our grief.


My mood hadn't improved today, and fortunately Peter understands these moods, which helps. The one bright spot in our day was we received a package from Tricia. Unexpected surprises are always lovely. I actually am not sure what was more of a gift, her actual card and sentiments or the meaningful gifts she sent. Tricia collected gifts for us that reminded her of Mattie along her vacation travels, and shared them with us. Tricia knows my love of butterflies and how they remind me of Mattie. Just when I thought I have seen almost everything with a butterfly on it, she surprised me with this wonderful butterfly wind charm. The monarch butterfly is actually a hologram and the picture changes with the movement of the wind. The crystal hanging beneath it also captures the sun, and spreads rainbows around our whole deck.

This will always be Tricia's Mug to me. I get attached to objects easily, especially when given to me by those closest to me. I love the butterfly on this mug and the sentiments attached to it.

As you can see, my refrigerator is covered with Mattie art work. Things he created in preschool, kindergarten, and at home. In addition, we have quite a magnet collection as well on the refrigerator, and Mattie, like me, enjoyed this collection and always moved them around and rearranged them for me. Our newest magnet addition, thanks to Tricia, is this beautiful blue crocheted butterfly. Seem to be a very fitting reminder in and amongst Mattie's things.

Friday, June 8, 2012

Friday, June 8, 2012

Tonight's picture was taken in June of 2007. Mattie was invited to a friend's superhero birthday party, and Mattie decided to attend dressing the part. The irony was two months prior to this party one of Mattie's friends gave him this superman outfit for his birthday! Good timing, because at age 5, Mattie related to the whole concept of a superhero! It was on that day that the phrase SUPER MATTIE was coined. In 2007, the notion of childhood cancer was no where on our radar scope, but in July of 2008 (when Mattie was diagnosed), we learned that this was not only a cute title, but a very worthy one!

Quote of the day: The only real happiness comes from giving. ~  Author Unknown

I had another busy day today which began with my monthly professional licensure board meeting. However as the day progressed I began reflecting on the blog, and thought to myself what was I going to write about tonight? I feel like I am in an emotional funk, therefore, I am very aware of the fact that being in this state it is harder to write each night. So when in this mood, it is easy for me to say to myself that I have had enough and the writing must stop. I also have to imagine it is hard for an outsider to read my words, and understand and ACCEPT that our healing won't happen in a day, month, or year. It will occur over a lifetime, if ever.

Before I sat down at the computer this evening, I happened to be in Mattie's room putting some things away. While there, something out of the corner of my eye caught my attention. It appeared to be some sort of flashing outside Mattie's window. So I was intrigued, stopped what I was doing, and went over to the window. To my amazement, I saw a light show only nature could create. What was causing the flashing? Well I would say it was least 50 or more lightning bugs. These bugs were in our commons area, but not just any or ALL parts of the area. The bugs were ONLY flying around the area where Mattie always set up his Christmas light display with Peter. It was an absolutely remarkable sight that caused me to paused. I watched the event for 10 minutes and while watching, a lightning bug actually flew to Mattie's window and sat on his screen for quite some time.

Somehow seeing this display reminded me of Mattie. Almost as if he was sending me a sign. A sign I couldn't possibly miss. I know if Mattie were alive, he would have been right next to me in fascination over this light show. So whether this was a sign or not, it most definitely was an inspiration. An inspiration which got me writing tonight and got me to reflect on how those of us who are grieving turn to aspects in nature to help us reconnect with our loved ones. We seek out these special signs, because it is within these signs that we find hope. Hope at this stage looks very different than while Mattie was battling cancer. Hope for me may mean that I can recall a Mattie memory vividly, remember Mattie's voice, his antics and character, and what Mattie looked like. As time marches on, memories do become faded, and I think the scariest part for a parent who lost a child is to forget. To forget every aspect of your child and to forget what that role felt and looked like. Tonight's lightning bugs seemed to rejuvenate that feeling for me.

Thursday, June 7, 2012

Thursday, June 7, 2012

Tonight's picture was taken in May of 2007. During our trip to Lancaster, PA, we came across a large open field. With crops growing, but NOTHING else. Well nothing else but this rainbow thing on the ground. We stopped the car and got out to check on this ground cover. It turned out to be a trampoline. Mattie ran right onto it and started jumping all around. I had never seen such a trampoline, much less would have expected it in the middle of an open field for anyone to run and jump upon. Needless to say it made for a very memorable moment. 



Quote of the day: We see things not as they are, but as we are. ~ H.M. Tomlinson


I know that I do see the world and everything in it based on how I am feeling. I do not corner the market on this, most of us are greatly influenced by what is happening to us or those around us, and this "as we are" can impact one's outlook, one's productivity, and one's ability to have hope for the future.

I had a slower day today, which was needed considering my pace yesterday. But I am very aware of the fact that how I am emotionally feeling is impacting how I am physically feeling. As summer approaches, the isolation I feel grows. I am very aware of children being off from school, families doing things together, and since this is a slower time of year for the Foundation, I feel these changes more profoundly. With the loss of Mattie, a sense of isolation does ensue, and it would be easier at times to shut down or off from others around me because I deem our lives as different. However, I try to continue to find that balance of being socially and emotionally engaged with the world. I am not always successful, and the irony is the more one separates one's self the worse one can feel. I don't feel like writing much tonight, but it is my hope that tomorrow is another day.

Wednesday, June 6, 2012

Wednesday, June 6, 2012

Tonight's picture was taken in May of 2007. This was Mattie's first roller coaster ride EVER! It took place at Dutch Wonderland in Pennsylvania. Unlike me, Mattie was willing to try this ride, and after his very first attempt he fell in love with the thrill. I can't tell you how many times Mattie rode on that coaster that day, and then after that point, whatever park we went to, he would seek out the roller coaster FIRST.

Quote of the day: When you are listening to somebody, completely, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, to the whole of it, not part of it. ~ J. Krishnamurti


I absolutely love this quote!!! I love it because the art of listening is NOT JUST listening to the words, but understanding the feelings that underlie the words. That may sound simplistic, but it actually is a very hard skill to apply. When I was an educator of mental health professionals I found that this was a VERY hard skill to teach. Some people can listen for words and dissect out the feelings better than others. What enables a person to be able to do this? I think to be able to develop this skill, one first has to be attuned to his/her own feelings. If you can't understand yourself and be able to process things internally, you most certainly won't be able to do this for another human being. With that said, I also think active listening requires a person to truly care about another person, for active listening is time consuming and exhausting.

I had a full day of running around today with all sorts of meetings. Peter has warned me about my pace and that I need to start back slowly considering how sick I have been. My friend Tina also text messaged me today with the same message. Two messages in one day about the same topic. However, Peter and Tina were both correct, because tonight I am wiped out. Between meetings, Tina was text messaging me, and it was like having a virtual cheering squad with me, which I SO appreciated throughout the day.

One of my meetings brought me back to Georgetown University Hospital. While on the fifth floor, which is where the pediatric units are located, I bumped into Debbi. Debbi was Mattie's sedation nurse angel, as I always called her. Debbi was one of the people at the Hospital who went through many of the horrors with Peter and I. When Mattie first entered the Hospital in July of 2008, his first oncologist was under the notion that kids did not need to be sedated for MRIs. That is a riot, especially if you have ever been confined inside of a MRI machine! Any case, after two scans without sedation, I had it, and this is where Linda (Mattie's child life specialist) and Debbi came into the picture. They came with me one day to observe Mattie through a non-sedated CAT scan, and from that day forward, Mattie never had another scan or procedure without sedation. They could see it was just inhumane to do this to him, because Mattie was scared out of his mind, crying, and hiding in the corner of the scanning room. Debbi also knew that Mattie never woke up calm after being sedated. Mattie either woke up highly agitated, angry, or hysterically crying. We never knew which one we were going to get, and frankly I am not sure what I dreaded more, the procedure, the sedation, post-sedation, or waiting for the scan results. Any one of these items would be hellish alone, but altogether, it was asking for the impossible.

Based on how I am physically feeling, my sheer exhaustion from running around today, and then going to the Hospital, I was in a fragile state. Debbi invited me into her office after my meeting and asked how I was doing and said that there wasn't a day that goes by without her thinking of us and Mattie. When I hear the line, NOT A DAY GOES BY, as I mentioned before on the blog, my mind becomes flooded with the song from the musical, Merrily We Roll Along. I can picture Bernadette Peters singing Not a Day Goes By (http://www.youtube.com/watch?v=5kMlQgyz834) and I become absorbed in the loss of Mattie. As if Stephen Sondheim wrote the song with Mattie's death in mind. The beauty about Debbi is she was Mattie's nurse, and though she cared for him, the emotional support she gave was really to Peter and I. Mattie associated Debbi with sedation and procedures and truly tried to avoid her presence if possible. With Debbi, I do not have to pretend to be happy, together, and that life is moving on. Debbi understands that life for us will never move on, and therefore when you find a person who gets that, can verbalize that, and can LISTEN for that, they are truly priceless. Which is why with Debbi I can easily cry, and did so in her office today. Because as Debbi isn't afraid to say..... NOT A DAY GOES BY!

Tuesday, June 5, 2012

Tuesday, June 5, 2012 -- Mattie died 143 weeks ago today.

Tonight's picture was taken in May of 2007 at Dutch Wonderland. Peter and I took Mattie to this theme park over Memorial Day weekend. It was an adventure for all of us. At the park, Mattie met Duke, one of the park's mascots. When I was Mattie's age I was scared out of my mind with any type of life sized character. If Duke had come up to me when I was Mattie's age I would have been screaming and running the other way. Not Mattie, he grabbed Duke's hand and posed for a picture! It was also at Dutch Wonderland that Mattie fell in love with roller coasters!



Quote of the day: What happens to a person is less significant than what happens within him. ~ Louis L. Mann


Though I appreciate tonight's quote, I would have to say that sometimes what happens "to a person" greatly influences what happens therefore "within" a person. I received a text message today from my friend Ann who noted that for the past two years I have and continue to battle all sorts of illnesses. That my health has not been the best. I suppose that notion could upset me or even perplex me, but it does not. It does not because thankfully all my years of counseling family caregivers and being very familiar with the research literature has paid off. As I joked with Ann today, I am now the classic case study that I used to read about.

There is a great deal of caregiver research out there that discusses how the stresses of managing this role can impact one's health and immunity. When I refer to a caregiver, I mean a person who is not paid for caring for the physical, financial, emotional, and psychological needs of an ill or impaired family member or friend. Chronic and long term caregiving is very debilitating, and though my caregiving of Mattie was only 14 months (the average caregiving stint is usually 5 or more years), it was a very intense form of providing care. Care that impacted my sleep (if I got any), when and if I could eat, and my mental sanity. It is hard to describe the way of life Peter and I led, unless you have lived for some time in a hospital setting. If you think you get rest and peace in a hospital room, I assure you, that you don't! People are coming in and out of your room 24 hours a day, there is NO privacy, and the noises within a unit can be terrifying at times. I remember hearing children on the floor dying in the rooms next to me, and the crying and wailing of families were deafening. Some nights I had to put a pillow over my head to drown out the noises!

The horrors of cancer maybe physically over for us, but the emotional wounds of childhood cancer remain within us always. One of my favorite studies that I recall was done by a team of researchers in Ohio. The Glasers compared the healing time of medical residents versus that of family caregivers. Both groups are perceived as living with HIGH stress levels. The Glasers gave participants of the study a minor puncture wound on their arms, and then assessed which group would heal faster. The thinking being that stress prevents rapid cell regeneration and repair. It turns out that family caregivers healed much slower than the medical residents and this was the first study of its kind to show the significance of family caregiver stress and the correlation between caregiver stress and direct physical health.

Recently I read an article entitled, "A loss like no other" in Counseling Today (which is a monthly publication by the American Counseling Association). The article caught my attention because I have found so many, even within my own profession, who do not understand grief. However, this article resonated with me because it made it clear that loss is universal, but every individual's grief process and experience are unique. In fact the article went on to say that "society often emphasizes getting over things and moving on, but in many situations of loss, the process of getting over it doesn't happen quickly, if ever. Grief is an ongoing process of adaptation. The idea of closure is no longer seen as being possible for most people. Rather it's, 'how do I adapt or integrate this loss into who I am and into everyday life.'"

I particularly appreciated learning about the "dual-process" model of loss, which looks at both loss-oriented stressors, which deal with thoughts and feelings related directly to the loss, and restoration oriented stressors, which refer in part to the life roles that have been changed after the loss." In fact, making meaning out of loss is quite complex. For we lost Mattie, but we also lost our parental identity, and our expectations for the future in this role.

I am feeling a bit better today, but still not myself. I have a full day tomorrow of meetings, so it is my hope I can pull it together to manage through the day.

Monday, June 4, 2012

Monday, June 4, 2012

Tonight's picture was taken in May of 2007. One weekend we took Mattie to Lancaster, Pennsylvania. The home of the Pennsylvania Dutch. Mattie loved the farms and was particularly interested in the wagons. It was on that trip that Mattie and I were introduced to apple butter, and we both absolutely loved it! So much so that when we came home, Mattie wanted apple butter on all bread products he ate!


Quote of the day: If we are intended for great ends, we are called to great hazards. ~ Cardinal John Henry Newman


My friend Charlie sent me this quote today, and it absolutely resonated with me. I most certainly could have done without childhood cancer in my life, seeing Mattie suffer and die from this disease, and be forced to continue living in my current state. To me, Mattie's cancer and his death are a "great hazard." I never claim to be the only one faced with such tragedy. I am very aware of the multitude of travesties that surround us in the world, in our neighborhoods, and that impact individuals each day. However, since this blog is about Mattie, his battle, and the battle that Peter and I continue to live with, I feel it is safe to say that this is my "great hazard." From my experience, great hazards can make one passionate about an issue and cause, and thereby motivate one to achieve great ends.

In my mind, the Mattie Miracle Cancer Foundation had a very successful year, and as such, I deem this a "great end" or a great beginning as the case may be. I view the success of the third annual Walk as a small victory, since we were able to meet our financial goal and be able to strongly support the Mattie Miracle Childlife Program Fund at Georgetown University Hospital. A fund that helps hundreds of children and families a year. However, for me great victories do not come without consequences. Consequences on my health for example.

The Foundation isn't only a job for me, it has deep seeded emotional ties, which can of course make me passionate about the subject matter, but it can also be taxing on my mind and body, unlike any other job I have previously held. Despite being on antibiotics for 10 days, last night, all my symptoms came back and I was unable to sleep. So this time, I saw my doctor and filled her in on my last two weeks. I am back on antibiotics, a different one, in hopes that it will relieve me of my sinus infection. 

Because of how I am feeling, I am signing off for tonight. But I did receive all of our professional Walk photos, and hopefully I will be able to comb through them soon and share them! They are absolutely fantastic and capture the beauty and spirit of the event.  

Sunday, June 3, 2012

Sunday, June 3, 2012

Tonight's picture was taken in May of 2007. I have talked a lot on the blog about Mattie's love for tent caterpillars. Every spring, Mattie would collect tent caterpillars at either his preschool or school, transport them home, and then place them into our caterpillar jars. We would feed them and clean out their jars daily! Mattie looked forward to the whole process of metamorphosis. As you can see here, Mattie was posing with one of his caterpillar jars, with a big smile on his face because one of the caterpillars had spun a cocoon and Mattie knew that in a week or so, out would pop a moth from each cocoon.


Quote of the day: The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be. ~ Horace Bushnell


Though Peter and I would have loved to stay at the beach, we knew we had to pack up this morning and head home. Peter has to work tomorrow, and it takes a full day to unpack, tend to our garden, go grocery shopping, and deal with a week's worth of mail.

We said our good-byes to our friends and Christine could sense that returning home for me was going to be challenging. It is challenging for so many reasons, and not having to work now at a frenetic pace for the Foundation is a mixed blessing.

We arrived home safely and for the most part our garden is doing fine. We had two casualties, but I will replant those baskets this weekend. Our garden is very important to us, so I spent some time cleaning up outside, watering, and Peter got Mattie's fountain running again.