Saturday, March 9, 2013

Saturday, March 9, 2013

Tonight's picture was taken in March of 2009. Mattie was visited that day in the hospital by Charlotte. Or as Mattie called her, "his girlfriend." Mattie and Charlotte met each other in kindergarten and became instant and close friends. Despite Mattie's cancer, Charlotte always came to visit Mattie. She saw the good, the bad, and the ugly during his cancer battle. She was a brave six year old and a loyal friend. As you can see on the silk screen that Mattie was holding he drew a picture of Charlotte, as a reminder of their day together. Indeed Charlotte is blond, blue eyed, and has an infectious laugh. Mattie knew how to get Charlotte to smile and laugh and when she laughed you couldn't help but want to laugh too. Also notice the sun in Mattie's drawing. No matter what Mattie drew, the sun was always depicted. He did this from an early age. Given this, it should be no surprise that we selected the SUN to be the symbol of Mattie's Foundation!


Quote of the day: When you're lost in those woods, it sometimes takes you a while to realize that you are lost. For the longest time, you can convince yourself that you've just wandered off the path, that you'll find your way back to the trail head any moment now. Then night falls again and again, and you still have no idea where you are, and it's time to admit that you have bewildered yourself so far off the path that you don't even know from which direction the sun rises anymore. ~ Elizabeth Gilbert

Gilbert's quote captured my attention because her "night" has nothing to do with the time of day! Instead "night" refers to something far more ominous and harder to predict and cope with...... depression or grief. As her quote so aptly points out, night (as we all know) is inevitable. It follows the daylight hours. It happens again and again, and it is out of our control. Yet in the dark we can all feel disoriented. Living with grief from the loss of a child produces the same level of disorientation, confusion, directionless, and it can be all consuming that it is hard to know when and if it will end and whether you will see the sun (or in essence hope) again. But like the night, grief also seems to just happen, it is a feeling or cloud that weighs you down whether you want it to or not. The power of grief is hard to describe and sometimes you can't always predict when this darkness will set in. 
 
Today Peter wanted to go visit Mattie's tree. So we went to Mattie's school and spent some time cleaning up the debris on the tree. Peter planted bulbs around the tree a month ago and shoots are beginning to poke through the dirt. We will be back to the tree later in the month to decorate it for Mattie's 11th birthday. I must admit I have been feeling very tired, run down, and sad lately. I am not consciously thinking about it, but my friend Nancy pointed out to me that perhaps the connection was the fact that Mattie's birthday is approaching. She maybe right! In fact, I recall feeling quite the same last year at this time of year, as if my body has an internal clock to regulate grief. It logically makes no sense to me, and if I wasn't living this life, I am not sure I would even believe these feelings if I read them from someone else.

After our tour of the tree, we then drove to Mattie's upper school campus, where we hold the Foundation Walk each year. This year we are trying to change some aspects of the event and therefore spending time in the space is crucial for planning purposes. Peter and I spent two hours on campus. In the midst of being there we were surrounded by kids playing sports, families running about, and then we also bumped into Charlotte and her father. Planning the Walk has many ups and downs, and from my standpoint a great deal of stress. Anyone running a business knows that unless you generate funds, there is NO business. The Foundation is exactly like that, and our biggest fundraiser is in May and with that comes angst and the desire to make our goal and continue the work of the Foundation. This work is so intimately related to our son. To me failure is not an option because it would be a direct reflection on my connection to Mattie. Others may not see it this way, but then again the Foundation isn't their baby. I do consider ourselves lucky to have a core group of volunteers who are right there with us and work hard to help achieve our vision for the Foundation Walk. This is quite a gift because each year that we move further away from Mattie's death, his memory does become less vivid for some. Those who help keep Mattie's spirit alive are never forgotten but appreciated and cherished.   
  
 

Friday, March 8, 2013

Friday, March 8, 2013

Tonight's picture was taken in March of 2009. Peter and I took Mattie for a walk to the National Mall. We wanted him to get fresh air and to see the Cherry Blossoms. Despite the fact that Mattie was unable to walk, he did keep to his tradition. Along all our walks, he always collected a stick! Thanks to Mattie at one time we had quite a stick collection in our commons garden space.


Quote of the day: Sometimes I lie awake at night, and I ask, 'Where have I gone wrong.' Then a voice says to me, 'This is going to take more than one night.' ~ Charles M. Schulz


I had a long day which started with my monthly licensure board meeting. After this five hour meeting, I sometimes don't know if I am coming or going. Especially after interfacing with the public who comes in with questions as well as processing ethical complaints!

Later in the day I went to visit my friend Mary who lives in an assisted living facility. I am sure the day may come when she no longer recognizes me or remembers our interactions with one another. This will certainly be a sad day for me. Mary and I have not known each other a long time. We met each other in 2008, but we immediately related to each other because our sons both had cancer and then died. Such a death has a way of bonding people together because it is a rare and unnatural death. While visiting Mary, I planted an amaryllis for her. I did this for her in January, and she loved watching this plant grow and unfurl in front of her. So this is now a second bulb I planted and Mary just loves watching the process. Seeing greenery to me symbolizes life and when living in an institution, such sights are VERY needed!

Over dinner, Peter and I shared our day with one another. I could tell Peter was somewhat energized and wanted to talk. I attributed this to the fact that he got together today for coffee with a fellow dad who lost his only child to cancer. When you meet and talk with someone who gets you, it is really a very freeing and special connection. I was so happy Peter and this other dad relate to one another and as they both discussed it is rare to meet another parent who also lost an only child to cancer. In a way we are in a very rare club, and mind you we were already in an unique club to begin with since our children were diagnosed with cancer, and then died. The complexities of having an only child die of cancer are so numerous and yet this subtly is hard to discuss with others. Which is why finding and relating to someone who is walking in your shoes is a gift in an of itself.

Sometimes Peter talks with me about how difficult weekends are for him. These were times he and Mattie would do things together. Without Mattie it is hard for Peter to re-define his weekends. Weekends don't seem much different to me than every other day. But when I heard this other dad saying practically the same thing as Peter about weekends it made me pause. They share commonalities with each other that I can't always relate to, and that is because they are both dads. When Peter has these moments where he connects with someone emotionally about Mattie's loss, I take notice. I take notice because Peter, like me, needs a safe and supportive outlet. These outlets are hard to find for women, but they are practically impossible for men to find. Therefore when they present themselves, I take notice!

 

Thursday, March 7, 2013

Thursday, March 7, 2013

Tonight's picture was taken in March of 2009. I purposefully selected this photo because it highlights my experience with cancer and food. When Mattie was being treated with surgeries, chemotherapy, and experimental immunotherapy treatments, balanced nutrition was IMPOSSIBLE! First of all I was rarely home and in my kitchen to cook. We practically lived at the hospital and therefore had little to NO control over what any of us were eating. But secondly, Mattie's battle changed his appetite, his sense of smell, and taste. So though the notion of healthy and well balanced nutrition are important considerations in cancer care, when you are in the thick of it, you as a parent realize that your child eating anything is far more vital than nothing at all. In this photo, Mattie was getting a bone scan. His bone scan took hours, and he had to be NPO for it (without food or drink for 12 hours). So as the scan was finishing, he was starving and began eating a donut while on the scanner. One of the foods he requested! Mattie's treatment left him emaciated. He couldn't tolerate most foods, and the only things he would pick on were: vanilla shakes ONLY, potato chips, chicken tenders, french fries, vanilla frosted donuts, and macaroni and cheese.

Quote of the day: Sometimes the best reaction is no reaction. ~ Unknown

Peter, myself, and our friend Denise went to visit a center today called Life Without Cancer. It is located in Fairfax, VA and the irony is we had to go to the conference in California to learn about this local resource. This center helps patients cope with the social and emotional aspects of cancer, through psycho-education, therapy, and social programs. I would say the majority of their cancer patients are adults, but they do have some pediatric patients. The beauty of this program is that it is offered free to participants. I will write more about this visit in the next day or so. However, tonight I turn to a different matter altogether.

You maybe asking yourself, why is Vicki rehashing what Mattie would eat and not eat?!!!! Well there is a reason!!!! Contrary to tonight's quote, I do believe sometimes a reaction is not only needed but required!!!! This is such a time.

This summer I learned about a program that has been introduced at Georgetown University Hospital. The program is called Cooking for Cancer. The program was started by a mom whose son has thankfully survived Hodgkin’s lymphoma. She has used her insights with her son's battle to help others. At the core I appreciate and value her passion. In addition, her program is also funded by Hyundai Hope on Wheels. Hyundai has been helping kids fight cancer since 1998. To date they have donated over $58 million dollars to innovative cancer research and programs. Certainly something to take notice of. Despite their generosity, Hyundai, like so many other organizations does not support the funding for bereavement programs, especially for parents who have lost a child to cancer. I know this first hand since I applied for such a grant. I have many thoughts regarding this which I do not plan on writing about on the blog, other than, this decision saddens me. I can't tell you how many clinicians I have spoken to lately who chat with me about their programs and then say..... "it is too bad in 2009, that you did not know about our bereavement support group that we offer at our facility, because by now you don't need it!!!!" Incredible, as if grief just magically disappears after three years. When clinicians are espousing this false knowledge, it is no wonder our society thinks grief work (especially the grief associated with the loss of a child) happens and is completed in a year!

Those of you who know me well, know two things about me. I like to eat and I also like to cook! So the title of the program cooking for cancer caught my attention, until I read the article. The mom who started the program, began cooking for her son when he was diagnosed at age 11 with cancer. Growing up in Europe, fresh foods and cooking were a part of her culture. When her son got sick, she could see that his appetite was affected but became inspired to cook up all sorts of healthy and nutritious foods to encourage him to eat and to bolster his immunity. She also pursued a master's degree in nutrition! Her son's physician stated, his "positive outcome can be attributed not only to the multidisciplinary team’s commitment to the treatment of childhood cancer, but to his mother’s tenacity with respect to his nutrition."

From a health stand point and from an outsider's standpoint, I most likely would embrace such a program. I get it in theory!!! But remember..... I am an insider. I lived in a hospital, saw what chemotherapy can and does do to a young body, and I also saw how cancer impacted our lives. I can assure you I could have been Julia Child and there still would have been nothing I could have concocted that Mattie would have eaten! There was no negotiating with Mattie and as a parent stuck and confined within a hospital I learned to pick my battles. I did not chose food to be one of those battles. But the issue I take with the whole tone of the article and statement is that a "positive outcome" occurred due to treatment and good "nutrition." I understand why the hospital is promoting such a program and I also appreciate the importance of good nutrition. Certainly I think that is vital for ALL of us and for children moving into the survivorship stages of their cancer battle, but I have to tell you as a parent who lost a child to cancer, all I feel when reading this and watching the Today Show clip below is a lot of judgment. I feel that in essence because I did not cook for Mattie and provide him with a balanced diet that he did not have a chance at a positive outcome. I of course know this is NOT true because we did everything possible to give Mattie a chance at survival. Multifocal Osteosarcoma was a death sentence and NO amount of nutrition would have prevented the final outcome!

I am certain it is not the intention of either this mom or the program to leave me with this feeling, but this is my reaction nonetheless. Not as a mental health professional, not as the co-founder of Mattie Miracle, but as Mattie's MOM. A mom who lost her only child to cancer. Words are powerful and words that our doctors say and use to promote certain programs can hurt and are taken to heart. I leave you below with the link to the article and to the Today Show clip promoting the program. A program which seems to be developing a national presence. Do pay attention to the children in the Today Show clip. These are NOT kids who look like Mattie, in treatment. But children who are in survivorship. For these children and their families, I have no doubt focusing on nutrition is key and that cooking healthy can be something that is vital for the whole family to participate in and learn about. But when programs are promoted one must never forget about those of us who lost children to cancer. Your messages are heard and absorbed by us too!!!! Chances are if you polled most moms whose children are in active treatment, you will find that nutrition and cooking a balanced diet are not on the top of their list. They may think about it, but there are many more pressing issues at hand and you are thankful for whatever your child is able to consume that day even if it is a french fry, ice cream, or any other trans fatty acid!

Cooking for Cancer: A Mother's Dedication to Nourish Her Child Helps Hundreds

http://www.georgetownuniversityhospital.org/body_dept.cfm?id=559097

Today Show
http://www.today.com/id/26184891/vp/51081665#51081665
 

Wednesday, March 6, 2013

Wednesday, March 6, 2013

Tonight's picture was taken in March of 2009. Mattie was given this beautiful rainbow balloon and I snapped a photo of him holding it because he looked so cute with it over his head.


Quote of the day: Nobody realizes that some people expend tremendous energy merely to be normal. ~ Albert Camus

Well so much for the winter storm Saturn. Everything was closed down today in Washington, DC. From schools to the government. Panic ensued and yet in the city all we received was a day of rain! This morning when I looked out the window, I saw a puffed up mourning dove by our feeders. The birds were appreciative to have access to seed, and several came by to visit! I can safely say there is NO white stuff to report on the ground.

I spent several hours working different projects today. While busy, my buddy wasn't far from me. As you can see Patches was in her perch, sitting on a green fleecy blanket. Patches no longer demands food. She has hyperthyroidism and used to be hungry ALL the time. Now with cancer, she has lost her appetite altogether. She is only consuming liquids.

I am not sure if it is this gray weather or working non-stop at home, but it has impacted my mood. I would say I am ready for the spring, fresh air, and to see flowers and greenery. Not that it changes things in my life, but it does bring some level of happiness to be outside.

 

 

Peter snapped this picture of Patches on my lap. This is now an evening occurrence. This may not look odd, but Patches has NEVER been a cuddly or affectionate type! Yet now that cancer has become a part of her life, she wants to stay close, looks for human contact, security, and affection. I am happy to know that in her hour of need, Nurse Patches is turning to me.

Tuesday, March 5, 2013

Tuesday, March 5, 2013 -- Mattie died 182 weeks ago today.

Tonight's picture was taken in March of 2009. Mattie was admitted to the hospital that day. How do I know? It isn't like I remember the date, but I can tell this fact simply by what Mattie was wearing. When Mattie was living in the hospital he refused to wear clothes. He only wanted to be in pajamas. I tried to coax him at first to wear clothes by day to keep a normal routine. But I quickly saw nothing was NORMAL about his life. Therefore if he wanted to wear pajamas, which meant less of a struggle with his body parts to put clothes on (remember Mattie had three out of four limbs with prosthetics -- therefore putting clothes over his head was HARD as well as balancing to put on pants), then I respected his wishes. However, when Mattie was home between treatments he did wear clothes interestingly enough. So I know from this photo that it had to be an admission's day. On that particular day, Anna (Mattie's physical therapist) set up an obstacle course in the pediatric unit to inspire Mattie to get out of his wheelchair and use his legs and arms. If I showed you the subsequent photo in the sequence, you would see that Mattie used his right leg to kick at this pyramid of cones! The cones came crashing down!


Quote of the day: Life's under no obligation to give us what we expect. ~ Margaret Mitchell


Today I went to my every three month visit to see a specialist following one of my many physical conditions. I have gotten to know this doctor since the Fall of 2009, when Mattie died. For me Mattie's death lives within my body and I would have to say some part of me is always hurting, in pain, or wearing me down as a result. Needless to say, after I saw the doctor, I came home and I literally went right back into bed. I was tired, feeling run down, and finally fell asleep.

I spent the rest of the day working on Foundation items, pursuing grant opportunities and the list goes on. My friend sent me the article entitled, "Being stoic for the spouse's sake comes at a high cost." I attached the link below. It is an interesting article that highlights a psychological study that assessed the impact of a child's death on a couple. Specifically the study examined a factor called, Partner-Oriented Self-Regulation (POSR). POSR is in essence the way in which couples either avoided discussion of their child's loss or attempted to remain strong for the sake of the partner. The results indicated that the only thing this type of avoidance accomplished was an overall increase in grief.

Dealing with a child's death is truly a battle in and of itself. It is an individualized battle within me, and I must admit it is hard at times to process it with Peter. I am not sure I avoid it to protect him, as much as it is to protect myself as well. In so many ways the battle is fought on two fronts: within myself and between us as a couple. Surviving the death of a child is an enormous task and it takes great understanding, love, patience, and commitment upon a couple to make a marriage survive. I think this article gives a brief glimpse into this challenge, a challenge which Peter and I are learning to continually deal with in order to grow and evolve as a couple.

http://www.sciencedaily.com/releases/2013/02/130220114044.htm

Monday, March 4, 2013

Monday, March 4, 2013

Tonight's picture was taken in March of 2009. The clinic at the hospital gave us special tickets to the Barnum and Bailey Circus. Private box seats!!! This was Mattie's first and last visit to the circus. We bought him all sorts of things while at the Verizon Center for him to remember his special outing, such as red glasses, a light up sword and this other toy that spun around and glowed in many different colors. It was a night to remember and when I see these toys in Mattie's room now, it instantly transports me back to this night!




Quote of the day: Death ends a life, not a relationship. ~  Mitch Albom


I have been trying to determine exactly why I feel so exhausted and unable to truly function and then it hit me. I am developing a migraine. I am so used to daily headaches, that I try to tune out my head pain. But today was too over the top to ignore.
 
I received an article from a friend today. I included the link below to the article in case others haven't read it. The article was written by a woman who lost a child a decade ago. Yet as she so poignantly points out, the pain remains. Time has not helped her to "move on." Platitudes do not help and as I was reading her words, I felt like they were my own! As she says, her loss is with her each and every day, every minute of the day! I couldn't have stated it better and keep in mind that she is further along the grief journey than I am.  I have said it before on the blog, that my issues are not just VICKI issues, they are the issues faced by parents who are grieving the death of a child.

This mom goes on to explain how her friend's cards on her deceased child's birthday and on special occasions like on mother's day are so appreciated. I totally get that! It is vital to acknowledge these milestone moments and when they are not, we almost feel as if our child didn't exist or that his/her existence doesn't matter to others. The child maybe physically gone, but his/her presence remains very much alive in the mind and hearts of the child's parents! I am signing off for tonight, but appreciated reading this mom's words and seeing I am not alone in my thoughts and feelings.

The Death of a Child: A Parent's Worst Nightmare
http://www.washingtonpost.com/opinions/the-death-of-a-child-a-parents-worst-nightmare/2012/12/21/734cb23c-4956-11e2-ad54-580638ede391_story.html

Sunday, March 3, 2013

Sunday, March 3, 2013

Tonight's picture was taken in March of 2009. Mattie went through his donut phase, his vanilla shake phase, his potato chip craze, and his mac and cheese moments. This particular photo captures his next food of choice..... chicken fingers and french fries. I have no idea what it personally feels like to be on chemotherapy, but I saw how it wrecked havoc on Mattie's body and appetite. Therefore whatever Mattie craved to eat, he got! Mattie was assigned a nutritionist at the hospital who tried to present him with a balanced diet. But between the challenges faced within the hospital's kitchen and Mattie's stomach, Mattie ate NO hospital foods! AT ALL! Anything Mattie ate came from outside the hospital. At first I was concerned about Mattie's diet, but then I realized the diet was the very least of our problems. Mattie's battle with cancer helped put so much of life into context for Peter and I, and frankly even though the battle maybe technically over, what I observed and lived through remains a part of us.


Quote of the day: Reality continues to ruin my life.  ~ Bill Watterson


Peter and I had a very slow day. Both of us seem very tired. Peter worked a six day week and really needed down time today. Whereas, I am exhausted but can not sleep at night. I have bouts of insomnia and this week is one of those times. It doesn't matter how busy or active I am by day, when it comes to sleeping I remain wide awake. This is definitely a post-cancer phenomenon. Prior to Mattie getting cancer I could sleep anywhere and at any time of day. In fact, Peter and I have changed roles. He now can sleep anywhere and he is out like a light.

Living in a hospital and dealing with Mattie's cancer impacted my whole life mentally and physically. However, sleeping is just one of many long-term effects of surviving Mattie's cancer. I have mentioned this before on the blog, and people think I am joking, until you see the problem for yourself. I can no longer read any kind of print with any noise around me. This is a problem and a limiting one, because I can't read a book out in public and I most certainly can't read a document that is given to me within a meeting. Anything that I have to read and process, must come before me ahead of time so that I can read it in absolute silence. Otherwise, I can read the words but I have NO comprehension of what I am reading. This is a new problem. Prior to Mattie's cancer, I could read, talk, and listen to the TV or the radio all at the same time. Now I get sensory overload quickly and my brain just shuts down.

I very much appreciate the comments I have gotten on the blog recently, and I am comforted to know that others feel like me or understand the frustrations and anger I experience after losing Mattie to cancer. Naturally it doesn't make any of us who lost a child to cancer feel any better, but it does give us the insight that we aren't crazy and we aren't alone.