Saturday, October 22, 2011

Saturday, October 22, 2011

Tonight's picture was taken in October of 2006. Mattie was four years old and wearing the calico cat costume I sewed and designed with Mattie's help. Mattie chose to be a calico cat, because he loved Patches, our cat. Ironically Mattie and I made this costume together when he was three. However, a day before Halloween in 2005, Mattie was hospitalized with sepsis and never got to wear the costume or go trick or treating that year. We certainly could have used Linda's (Mattie childlife specialist) help back then! Any case, the following year, Mattie was able to wear the costume and as you can see, he was a very cute cat! 


Quote of the day: Those whom we loved never really leave us. They live on forever in our hearts, and cast their radiant light onto our every shadow. ~ Sylvana Rossetti


Peter and I are thrilled that Tricia, one of Mattie's outstanding HEM/ONC nurses, became a finalist in the Johnson and Johnson amazing nurse contest. As some of my readers may recall, I completed the on-line contest application for Tricia and submitted it before I went to visit my parents in Los Angeles in September. I wanted to give Tricia something special for her birthday, so I decided to surprise her with a  copy of my nomination essay. I am deeply moved that my 300 word essay (which was impossible to write, since it is hard to express the true depths of a person in only 300 words!) has made it this far, and is deemed to reflect how special Tricia is as a nurse and person. Remember that 1200 applications were received by Johnson and Johnson. From 1200 applications, Tricia became one of the 20 semifinalists. Thanks to ALL OF YOUR voting and support, Tricia has now achieved a finalist spot. I received this email today from my mom about Tricia and the contest and wanted to share it with you.  

My mom wrote, "We are happy to hear of the overwhelming response your letter to JNJ produced in support of Tricia's nomination to the Amazing Nurse Contest held online by JNJ. Your letter documented why her selection as one of the 5 finalists was justified. It is a great tribute to you and your letter of recommendation that Tricia, a pediatric oncology nurse on the staff of Georgetown University Hospital, inspired such popular support that she came out a winner again.  Her professionalism and her compassionate humanitarian spirit are attributes of a great nurse. She was blessed with a vivacious personality and has innate social skills which gives her an advantage in her work with children. These qualities were major factors in helping Mattie cope with his long and vicious battle with cancer that he eventually lost. Unfortunately, there was nothing  modern medicine could do to save his life.  But he fought valiantly and she encouraged him every step of the way.  She could be irresistibly playful when he was in a funk changing his mood in a New York Minute from sad to happy.  She knew how to relate to him as a child and could interact with him on this level which was so important because he was isolated from his friends when he was in the hospital undergoing treatment. She was his nurse, his friend, and his playmate and she ministered to you and Peter when things went awry. She was also an outspoken advocate for him when his treatments were not producing the desired results. I have seen her take on doctors whenever she felt it was necessary and her input always took into account how Mattie was feeling recognizing he was a boy who wanted some control over what was happening to him. For her devotion to Mattie, you and Peter over the 15 months Mattie was in the hospital, she deserves this special recognition from JNJ. This is a terrific moment in time for Tricia and the hospital and wherever Mattie is he is smiling down and applauding your accomplishments on his behalf.  But most of all, his joy comes from what these wondrous things mean for Georgetown Hospital and for Tricia. Her contribution to children in the pediatric oncology division of the hospital are now well known beyond the environs of the hospital and Georgetown's sterling reputation for outstanding medicine is being acknowledged through Tricia's selection.  In my heart, I know that Tricia is the one!  Now it is up to the judges to make the final decision and my only recommendation is that we all engage in collective prayer until the final selection is made. From our hearts to the hearts of the final arbiters of the contest, please let Tricia be the one!!"

This afternoon, I went to visit Mary, Ann's mom. When I arrived in Mary's room, she was awake and seemed out of sorts. So I helped make her more comfortable in bed and then sat on her bed to chat with her. While sitting she reached out to me to hold my hand. Which is not unusual for Mary. I think when one lives in an institutional like setting, the power of touch and connecting is so important. In fact, I find when I walk down the hallway of Mary's facility and pass older adults in wheelchairs they all try to reach out to hold my hand. Needless to say, if a hand comes my way, I always reach back in return! 

While sitting with Mary, she asked me about her husband and how he died. In a way, Mary knows I was with her when her husband died, but she is sketchy on the details of his death. Yet she wants to hear about them. So tonight we relived and reminisced about the time her husband died. I walked her through the whole evening, and then walked her through what the weeks looked like after her husband died. After all, Mary and I were both grieving losses at the same time. I told her that after her husband died we spent a great deal of time together. I told her about how we packed up her husband's things and rearranged her room. She was very intrigued at listening to my stories, and then paused to let me know that she did remember many of the things I was telling her about. But mostly she wanted me to know that she remembered our time together. Mary and I have known each other for about two and a half years, and yet, we always joke that it seems much longer. But I think helping someone lose a loved one and then sitting with them through the long grieving process, can bond people together in an intense and unforgettable way.

Friday, October 21, 2011

Friday, October 21, 2011

Tonight's picture was taken in October of 2004. Mattie was on a field trip with his first preschool to a pumpkin patch. At this farm, there was a wonderful barn filled with hay that the children got to run around in and play. As you can see Mattie was right in the mix of things and having a good time.

Quote of the day: Grief does not expire like a candle or the beacon on a lighthouse. It simply changes temperature. It becomes a kind of personal weather system. Snow settles in the liver. The bowels grow thick with humidity. Ice congeals in the stomach. Frost spiderwebs in the lungs. The heart fills with warm rain that turns to mist and evaporates through a colder artery. ~ Adam Rapp


The other day I received a lovely email from my new friend, Heidi. Some of my readers will recall that I met Heidi in zumba class. Heidi actually knew me as soon as I entered the class. She is an avid blog reader and she even saw me from afar one day at the hospital with Mattie while she was visiting her ill friend who was seeking treatment at the same hospital. I have appreciated Heidi's thoughtfulness and kindness in class and we trade emails with each other outside of class to find out when we can attend class at the same time. A couple of days ago, Heidi read my blog posting which asked whether a child remains alive within a parent after he dies. Specifically that evening I wrote about how it is natural to hear parents reflecting on how their children are like them, but can we say the reverse? Are children reflected in their parents? This seems like an important question to me, considering Mattie is physically gone from our lives. This question prompted Heidi to write to me. This is what she said, "I am so happy for you for the great news you received yesterday (this is in reference to the award Mattie Miracle will be receiving from Georgetown University Hospital in November). Your little Mattie must be smiling down on you. I feel like I know him from your blog, pictures and meeting you. You mentioned in an earlier blog if children live on through their parents. I think they truly do. While kids are a reflection of their parents, parents often change from their interactions with their kids. A child's interest in things can influence their parents and gives the parents a whole new way of looking at the world. Simply put, everything you mention in the blog about Mattie is his spirit living on through you."

I appreciated Heidi's message a great deal because she got me to stop and pause about what she was saying. When I thought about it, my first reaction was she is absolutely correct. It is obvious and yet at the time it wasn't obvious to me until she made me think about it. My interests have changed a great deal after having Mattie. He definitely exposed me to many new ways of looking at the world and though he is not present in my life now, his presence lives on through my interests for example. I can assure you that prior to Mattie's birth, I did not like spending time outside, taking nature walks, appreciating greenery and trees, and the serenity of being outside and without crowds. In addition, I have a great interest in trains and boats, not to mention bugs and things that crawl. This summer we had a ton of slugs living in our garden. At one time, I would have worked hard at removing them, but because of Mattie and his love of bugs, I embraced their presence. In fact, when I saw the slugs they made me think of Mattie and how he would have been fascinated by their overwhelming presence. Sometimes I am too wrapped up with feelings and emotions to sometimes sift through the reality of the situation. Heidi's email caused me to see that Mattie is alive and reflected within me.

Peter went away for a day and a half with a friend of ours, also named Peter. Peter happens to be the treasurer of the Mattie Miracle Cancer Foundation, a parent of one of Mattie's kindergarten classmates, and a person who has supported us since Mattie's diagnosis. I joke with Peter often, because the first time I met him was not when Mattie was in school, but at a fundraising carwash that Team Mattie hosted to raise money for Mattie's cancer expenses. At the carwash Peter came up to me and told me that my blog had caused him to live his life differently. At the time I had no idea who I was talking to, but it was through this conversation that this man caught my attention. I valued his sensitivity, perspective, compassion, and his ability to articulate complex thoughts and feelings. He is equally as eloquent in writing, since over the course of Mattie's illness he wrote my Peter and I hand written letters. Many of which I kept because I found them touching, meaningful, and I felt like he understood our pain on a very deep level. Peter is also the person who connected us to the right professionals who helped streamline the creation of Mattie's Foundation. So from my perspective and experience Peter is a very special individual.

Peter has a vacation home in the mountains of Virginia and he invited my Peter along with him this weekend. My Peter loves the mountains, being outside, and not surrounded my tons of people and commotion. So this trip in a way is a break from the complexities of daily life. Something my Peter definitely needs. Men are not good at reaching out to one another, as women tend to be to offer support. Throughout Mattie's battle and even in his death, I do have a close circle of friends. But this is not the case for Peter. His support system is non-existent. When Peter reached out to my Peter in this way, I was very touched by his kindness. I can not think of a more special gesture than a friend wanting to go away with you, in order to spend time together, and appreciate each other's company.

This afternoon, my Peter wrote me an email. He said, "I am back from a 3.5 hour strenuous hike. Climbed about 1,500 in elevation, and probably about 6 miles. Funny story, to get to the hiking trail I first had to pass a neighbor's house. Anyway, the neighbor and I chatted and he gave me some advice on hiking. I said thanks and good-bye to him and his dog and took off. A few minutes later, his dog showed up beside me, and stayed with me the entire hike. I give that dog credit. The dog even walked me back to the house and stayed with me a few minutes. I then walked the dog home (not that this dog needed me to do that), but I still didn't get the dog's name until the end. Her name was "shadow" which gave me a shiver since me and my shadow, like my buddy, was with me for this adventure in the woods. Maybe I'm reading too much into it, but it was nice having some company." After reading this story about Shadow the dog. I was speechless. I guess I was stunned that a dog Peter didn't know would hike with him for almost four hours. This dog stuck close to Peter as if she knew Peter's number one "shadow" or buddy were missing. Needless to say, I think Shadow will not be forgotten by Peter anytime soon.

This afternoon I went to visit Mary, Ann's mom. We spent several hours together and then as I was leaving I bumped into Catherine, the other resident who has become my friend. Catherine needed to talk, so I sat with her for over an hour. While she was talking to me, she told me she should stop talking because she did not want to depress me. With that I laughed and she got it immediately. Catherine knows about Mattie, and she quickly deduced there isn't anything you could tell or confide to me that would shock me or depress me. As I was leaving, she thanked me for listening to her and told me that I made her day.

I was invited to Ann's house tonight for a family dinner. In fact, the irony is I was looking forward to that all week. However, as the day wore on, I felt something inside me telling me that I shouldn't go. That I am different and don't belong with a family filled with children. I have felt this way in the past with others, but this was a first for me with Ann. Somehow that signals something to me and just makes me sad. As I was writing the blog tonight, I was listening to Josh Groban's version of the song, Smile. Josh is a talented musician and singer who was introduced to me while Mattie was battling cancer. I hope hearing the song brings a smile to you too.

Josh Groban's Smile:
http://www.youtube.com/watch?v=dKw0bqj6NEY&feature=related

Thursday, October 20, 2011

Thursday, October 20, 2011

Tonight's picture was taken in October of 2004 at a Fall Festival in Virginia. As you can see, Peter was introducing Mattie to a goat. Mattie was intrigued by animals and really wanted to watch and pet them. So this festival was right up his alley because it had both fun activities and animals to experience.


Quote of the day: Mourning is one of the most profound human experiences that it is possible to have... The deep capacity to weep for the loss of a loved one and to continue to treasure the memory of that loss is one of our noblest human traits. ~ Shneidman

It is very apparent that Fall is here. Today seemed blustery and cold, and I decided to devote a portion of the day to a project Ann asked me to help her with. I am working on a Halloween mask for her son. The mask itself isn't hard to do, it just requires a lot of fine motor concentration and labor. If I ever complete the project, I will take a picture of it and post it on the blog. I am creating a creeper mask. I must admit I had no idea what a creeper was since I do not have Mattie or his friends around me anymore to keep me current. But a creeper is apparently a green-camouflaged creature that is part of a mindcraft video game. Creepers can not catch on fire in direct sunlight and they can wander around unharmed day and night. So in essence they have a special or super power type of quality. Our modern day version of a super hero.

Making Halloween costumes are nothing new to me. I hand made Mattie's calico cat costume and when he wanted to be an Air Force Pilot, I literally took a child's navy pilot's costume and transformed it into an Air Force costume thanks to the patches my friend Charlie sent me. It would have been easier if Mattie would have accepted being a Navy Pilot that year, but he was adamant that the costume had to reflect the Air Force. Mattie became enamored by the Air Force after visiting Andrews Air Force base's annual open house that spring. So in a way, I am carrying on the Mattie tradition by being involved in Halloween costume construction and alteration. 

My mom sent me an article a few days ago entitled, "Oklahoma cancer patient trades her life so her baby could survive." I just read the story today and was deeply moved and troubled by the decision this mother had to make. In a nutshell the decision was..... does she terminate her pregnancy and immediately undergo chemotherapy for her head and neck cancer, or does she forgo treatment so that she can deliver her baby with the hopes of seeing her before she dies? This type of life and death decision is complicated because it involves two lives. I attached the link to this article so you could read it for yourself. As you read the article, I wonder if you would have chosen the same course of action as this mother? She put her unborn child's needs before her own. It just makes you pause and think but it also illustrates to me yet again how powerful the force of parenthood is. It also illustrates to me that cancer is NOT a disease associated with getting older and living a long life. When I was growing up, I was under some sort of delusion that cancer primarily affected older adults. Yet here is this 41 year old mother who developed cancer, had a baby, and her daughter will never have the chance to get to know her mother.

I must say however, that it doesn't surprise me in the least to find out that it was a nurse who made the impossible happen in this story. This nurse knew how much this dying mother wanted to see and touch her baby. The mother was prevented from interacting with the baby because she had an infection that could have compromised the baby's health. However, the nurse worked with various hospital personnel to ensure that this mother spent time with her baby hours before the mother died. If anyone was going to advocate for this and figure it out, I have no doubt it would be a nurse! 

The description of how the mother and baby bonded and looked into each other's eyes was deeply moving to me. This last good-bye reminded me of when Peter and I had to say good-bye to Mattie. Just like in this case, words were not needed, the bond was just there, and just like in this story, Peter and I were surrounded by people who were crying and equally disturbed that cancer was severing our family.  
   
Click on this link to read the article: http://newsok.com/article/3613629

Wednesday, October 19, 2011

Wednesday, October 19, 2011

Tonight's picture was taken in the Fall of 2007. This was Mattie's formal kindergarten picture. The irony is the first picture the photographer took of Mattie was terrible. It did not even look like him. So I scheduled Mattie for a retake of the picture. I am so glad I did, because pictures are all I have now, and I would have hated looking back at this picture and being disappointed if it did not capture the essence of Mattie. The reason I am posting this photo tonight is because it became the topic of conversation today while I was grocery shopping. I will explain this below.

Quote of the day: Given a choice between grief and nothing, I'd choose grief. ~ William Faulkner

When I found tonight's quote, my only reaction to it was....... are you kidding me Mr. Faulkner? If you gave me the choice of feeling nothing or grief, I would take nothing hands down any day. Grieving the loss of Mattie is sometimes so pervasive and impacts my whole outlook, that at times I feel like I am going crazy. I can actually feel myself spiraling downhill with no idea when that feeling will stop. It is analogous to falling. When you trip over something or stumble, you can see the ground and you know the inevitable will happen.... you are going down! You have no control of the fall, the extent of your injuries, or how you will get up once you fall. Same is true with grief, except the fall is a psychological one. During various times throughout the week, I am constantly navigating land mines. I just never know what will set my grief reactions off. So if you gave me the choice of not having to feel like this versus having to live life filled with grief, I assure you I would select the former every time!

I went to the grocery store this afternoon, and while I was with the cashier I had my wallet open. The cashier admired the above picture and asked if this boy was my son. I said yes. She told me he was so cute and wanted to know how old he is now. I could have easily lied I suppose, but I didn't. I told her that Mattie died from cancer. She was thoroughly shocked and started to cry, especially when she heard he was only seven when he died. She felt terrible that she brought up this topic with me, and apologized to me numerous times. I told her not to feel bad for asking, in fact, other than the blog, for the most part I have no outlet to talk about Mattie. So when the topic of Mattie comes up, yes it is sad, and yes I feel unhappy, but at the same time it allows me to keep his memory alive. I enjoy when people take an interest in my stories, because stories are all I have left. I think most people shy away from talking about Mattie with me because they think it will hurt me or cause me to reflect on these painful memories. All of that is true, it is hurtful, but not in the way you may think. Whether you talk about Mattie or not with me, I hurt. By someone showing interest, in a way it is like sharing the hurt with me and not feeling and living it alone. Sharing a memory and listening to my stories are gifts.

When I left the store, I thought about this for a while and wondered whether I should remove Mattie's picture from the visible part of my wallet. The conclusion I came to was that I am not removing the picture. My only motivation for removing the picture would be to prevent the discomfort experienced by others. But that is ridiculous. I can't control the feelings and reactions of others and whether Mattie is alive and physically with me is irrelevant. Mattie is my son, and like most parents, they too have photos of their children in their wallets. In either case, I like seeing Mattie's picture when I open my wallet, and the funny part is Mattie did too when he was alive.

It was another day of rain, actually it was pouring! Ann and I met up to try to walk outside, but that did not materialize. Instead, we walked inside of a mall. It is not the same as seeing greenery, but moving around and talking are always good things. Lunch for us became very social. Ann lives in the same town as Mattie's school, which though it is large, it is also very tight knit and it is very easy to run into people you know. So I had lunch today with Ann and my friends Tina and Ellen. Lunch ended with eating chocolate, which seemed needed on a very rainy day.

I want to end tonight's posting by thanking all of my readers who have voted for Tricia (Mattie's nurse) over the past month. Voting is now closed to the public, and we can only hope that Tricia got enough votes to qualify her to be one of the five finalists. Keep your fingers crossed! Thank you SO much for all your help and for telling your friends and family about this contest!

Tuesday, October 18, 2011

Tuesday, October 18, 2011 -- Mattie died 110 weeks ago today.

Tonight's picture was taken in October of 2004. Mattie was about two and a half years old and this was his second Halloween costume. You have seen pictures of Mattie as Winnie the Pooh the past two nights, and tonight, I thought I would give you a close up of this cutie. Mattie's very first Halloween costume was a pumpkin. Mattie wasn't a fan of anything that constricted his movement or was itchy. So his pumpkin costume was basically orange sweatpants and an orange sweat top. The top had a lovely pumpkin embroidered on it. I remember each and every costume. When Mattie was one years old, he was a pumpkin for Halloween, when he was two, he was Winnie the Pooh, when he was three, he did not celebrate Halloween because he was inpatient in the hospital with sepsis, when he was four he was a calico cat (like Patches) for Halloween, when he was five he was an Air Force Pilot, and when he was six and battling cancer he was a mummy. He never made it to his seventh Halloween.

Quote of the day: Life is a series of experiences, each one of which makes us bigger, even though it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and griefs which we endure help us in our marching onward. ~ Henry Ford     

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


I started my day by going to Zumba class. Tuesdays are challenging days, despite the fact that 110 weeks have passed since Mattie's death. That may sound like a lot of time to my readers, but for us it seems like yesterday. Getting up to exercise gets me moving and out of our home. Otherwise, when working from home the tendency for me is to continue to be isolated and to block the world out. I go to zumba to exercise, but I primarily go because it is a mental health break. It forces me to interact and meet new people.

Before I headed home from class I stopped by Ann's house. She wanted to give me a special muffin she bought me. Naturally there is a story behind this muffin. When I got back from Cape Cod recently my friend, Carolyn (a fellow preschool mom, who happens to be from Massachusetts like Peter and Ann), asked me about my trip. I told her about it and then commented that I have never seen so many Dunkin Donuts in my life! I am pretty sure that in addition to the Red Sox Cult, there is a Dunkin Donuts Cult alive and well in Massachusetts. In fact, I am bold enough to say that I believe these two cults go hand in hand and support each other. I was joking with Carolyn about Dunkin Donuts coffee and donuts and asked her if there is something addictive in both items that cause people to crave more of them. Typically I am NOT a donut fan, but I do love their donuts. Carolyn told me if I liked the donuts, then I had to try this coffee cake muffin. I happened to mention this zany conversation to Ann and low and behold today I experienced a Dunkin Donuts muffin. I think what is really happening is Peter, Ann, and Carolyn are trying to get me to join this cult, and with my tendency to love sugar, I am an easy sell.

I spent the rest of the day working on Foundation items. I had a great conference call with a psychological researcher based in Philadelphia who specializes in working with children and families battling cancer. I consult with this psychologist on occasion, when I want to bounce off ideas and get feedback about some of the ideas I have for the Mattie Miracle Cancer Foundation. Since our mission is to support children and families psychologically and socially throughout their cancer diagnosis, it becomes imperative for us as an organization to understand how we can better support the researchers conducting the psychological studies, particularly studies that generate best practices and provide insights into evidence based services.

However, my two highlights for today both came from Georgetown University Hospital, where Mattie was treated. The first ray of sunshine came in electronic format. I attached the link here so you could read Georgetown's Childlife Annual Report. I was thrilled to see Mattie Miracle represented in this report. As I know Mattie would be too! Childlife at Georgetown meant a great deal to Mattie, Peter, and I. Without Linda, Mattie's Childlife Specialist, we would have been lost!

Georgetown University Hospital Childlife's Annual Report:
http://www.georgetownuniversityhospital.org/documents/ChildLife/ChildLife_AnnualReport090711.pdf

The second ray of sunshine which I am going to hold onto for quite some time came from Tim, one of the Hospital's Administrators who we have gotten to know well since Mattie died. Tim told me he was calling on behalf of the chair of the Department of Pediatrics to let me know that Mattie Miracle will be honored with a special recognition award on November 17 at the Four Seasons Hotel in Georgetown. Tim said that Georgetown is very grateful for all that we do for the Hospital, the children, and their families. Peter and I consider this a great honor and the other two women receiving a recognition award on the 17th will be Laurie Strongin (who wrote the book, Hope for Henry, which some of my readers may recall I read) and Deb Johns (who is the founder of Scout bags). So stay tuned for more information about this event. Needless to say, when I get bogged down with the notion or delusion that I am not being effective, I will stop and think about this recognition. Tim made my afternoon, and I was deeply touched that we will be allowed to say a few words about Mattie and the Foundation at this Friends and Sponsors dinner.

I would like to end tonight's posting with a message I received from my friend and colleague. Nancy wrote, "Each day that you write about Mattie and your experiences gives me pause. Last night's reference to "tiger and dragon" parents was so moving and distressing. I have walked the journey with you, my friend, mentor, colleague, and yet last night I felt a new and deeper appreciation of what Peter and you have gone through since 2008. I don't know if I can express in words what my heart felt as I read that story. I think it was another dose of reality that living for the moment is a prescription to follow. We never know what is in store for us and often times, the present looks different than what we imagined it to be. I know that Mattie brought us together for a reason. To me the reason is balance. We need to balance our pain with love, our sadness with joy, and our hearts with our minds and souls. Mattie, in his few years on this earth, has created a community that grows and reaches out to new and old participants alike. His curiosity and appreciation of the universe transcends what we as adults understand. On this Tuesday and every day to come, I wish you understanding and acceptance. I wish you strength to carry on this crusade to stamp out childhood cancer and am confident that the Foundation will be a catalyst in this arena."

Monday, October 17, 2011

Monday, October 17, 2011

Tonight's picture was taken in October of 2004 at Mattie's first preschool. I attended Mattie's school Halloween party and contrary to what the director of the school kept telling me, Mattie could clearly sit still and could cooperate by sitting in a circle. This picture is rather ironic, if you could hear the feedback I was getting from the director at the time. Mattie and I both loved the character, Winnie the Pooh. However, that wasn't the reason Mattie chose this costume. He selected it because it wasn't complicated, scratchy, or cumbersome. To him it felt just like clothing, so he picked this costume for practical purposes. Despite the reason for his selection, he was one cute pooh.

Quote of the day: Every man dies, not every man really lives. ~ William Wallace


As promised, the question of the day is....................................................

Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


Last night, I received a NY Times article entitled, "Notes from a Dragon Mom" that was sent to me from a colleague of Peter's. Lauren wanted me to know that this article was very meaningful to her and it made her reflect on Peter and I. She wanted me to know that she views us as Dragon Parents.

Lauren is a Mattie Miracle supporter, so I knew the title Dragon Parent had to be complimentary. The title alone intrigued me and I immediately wanted to know what a dragon parent actually was. The sad part about this classification and realization is being a dragon parent is not something I ever wished to become or wanted to sign up for.

I attached the article below, so you can read it for yourself. I think it is a must read because it reveals the true importance of parenting, connecting and nurturing a child. Which is to be human, loving, and present in the here and now, NOT living in the future.

The article discusses two types of parents, the tiger parent and the dragon parent. The tiger parent I believe describes most parents of healthy and typically developing children. I admit to being a tiger parent at one time, before cancer came into our lives. Tiger parents are concerned about their child's level of education, physical development, and learning skills that will enable one to lead a stable, productive, and happy future. A dragon parent is quite the opposite of a tiger parent. A dragon parent is most likely the by-product of caring for a terminally ill child. The dragon parent is described as being "fierce, loyal, and loving as hell."

Unlike parenting a healthy child, caring for a child with a terminal illness is quite different. As the article states, "We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office." Raising a child with a terminal illness gives one "a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare." 

I did not know the labels at the time, but while Mattie was battling cancer, I saw myself transform from a tiger to a dragon parent. When we were battling cancer, the goal was to provide Mattie a future. In fact, once his treatment was over (remember only after six WEEKS off of treatment did we learn Mattie's cancer was terminal) I was very focused on getting Mattie rehabilitated so he could walk, use his arms, and be able to go back to school. I was working on re-establishing normalcy and tried desperately to be future oriented. It was during that six week period I returned to being a tiger parent again. But it was a short lived visit, because once Mattie became terminal, I returned to my dragon status and I remain living life as this mythical animal.

During Mattie's intense battle with cancer, which entailed three major surgeries and 9 months of intensive chemotherapy, I lost my tiger status and became a dragon. When you are fighting to maintain your basic human needs, the only perspective that works is a present focus. The future isn't important and when you can't figure out whether you will eat, shower, pay your bills, or be able to sleep, then I assure you what tomorrow holds is NOT important. When in crisis, I think we all learn to live differently. We become very attuned to the present and while caring for Mattie, it did not matter if he was learning to read, if he was going to be a good athlete, if he could play the piano, if he got a good grade, and so forth. What mattered were his basic needs.... was he eating, was he able to go to the bathroom, and did he feel loved and secure. 

Factoring out the terminal illness component of being a dragon parent, I believe being a dragon parent is actually very freeing and is the ultimate form of parenting. It is living in the moment and enjoying your child in that moment. It is not about pressuring your child, forcing him to succeed, and setting unreasonable expectations for him/her. I realize my lens is skewed due to cancer, and most parents will never be faced with having to raise a child who has a terminal illness (thankfully!), but in a way, I wish all of you had the opportunity to be a dragon parent for at least a day. I have a feeling, you would appreciate the moment and your children more, because being wrapped up with societal expectations and pressures can weigh you down.

In a way, what Mattie's cancer did for me was it removed all expectations. I did not have to worry about school, I did not have to worry about play dates, I did not have to worry about whether I cooked or cleaned, or even went to work. All I focused upon was Mattie, the daily cancer battle, and making him happy. Certainly that is an amazing stress in and of itself, don't get me wrong, but when you can solely concentrate on trying to live and love each other, it is a dynamic I never really quite experienced while being a tiger parent.

Though I am no longer a parent, I do think this article gives you a feeling for how our cancer experience may have altered our thinking. We are no longer the same people we were back in 2008. Lauren commented to me that she felt the author was positive and not bitter. My response to her was I agreed, but I also think this mother is in the throws of caring for a terminally ill child. She can't expend the energy right now on grief, sadness, depression, and bitterness. Unfortunately I suspect these emotions will inevitably hit her once she loses her son. She may always remain present focused, as I find I am even today, two years after Mattie died, but the numbness, the feelings of hope, and being positive are not sustainable. Especially after surviving the loss of a child. I appreciated her article very much, and I unfortunately understand and know all too well where her journey is heading.

So I end tonight's posting with the moral lesson from "Notes From a Dragon Mom" which is to live for today and appreciate your children NOW, not for what they will be or will do TOMORROW.

========================================================
NOTES FROM A DRAGON MOM

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.
Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him. I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.      

A link to the article: 
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share

Sunday, October 16, 2011

Sunday, October 16, 2011

Tonight's picture was taken in October of 2004. We took Mattie to a fall festival and one of the activities he fell in love with were these huge slides. Mattie wasn't about to try going on these slides alone, but he was more than eager to experience this adventure sitting on Peter's lap. It is hard to believe that just a few years ago we were involved in such Fall activities, now I can barely remember we are in the month of October.


Quote of the day: If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people. ~ Thich Nhat Hanh

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

Tonight's quote interests me. If we are a compilation of all the previous generations before us, what happens when the youngest generation of a family dies? Certainly it is obvious that not only does the individual die (in this example, I mean Mattie), but also the history and the memories of the past generations die with him. But I wonder does a child who dies continue living on within his parents? If I read into this quote then..... If I look into the palm of my hand, will I see Mattie? As a society we are used to saying that our children look or act like us. But is the reverse true? Can I say I am like Mattie? Naturally I could just say yes, but there are times within the grieving process where I have moments of uncertainty, I have moments of great sadness, and continued shock over the loss of my seven year old, and simply I have moments of disbelief.

Peter went for a walk early this morning on Roosevelt Island. Along his walk, he snapped some pictures which illustrate that Fall has hit the Island. Not only do I love seeing the beautiful changing colors on the trees but Peter captured Mattie Moon in the sky looking down on him this morning. Look closely at the picture, because that tiny white dot at the top of the picture is the moon.

Peter seems to visit the Island at the right time, because during his morning walks, he always sees a Great Blue Heron and mallard ducks. Without Mattie around, I am quite certain these ducks are eating less. Because with Mattie, we would bring loaves of bread and stacks of crackers with us to feed the whole duck population on the Island.

Fall on Roosevelt Island!

Before Peter and I went out today, we were trying to locate Patches. We searched high and low for her and finally Peter found her in Mattie's closet sitting on a piece of luggage. The irony of this is Patches HATES luggage. When she sees us packing she gets edgy and anxious. So the fact that she went to sit on a bag today fascinates me. However, Patches spends a great deal of time in Mattie's room.

Peter and I met Ann and her family today at their church. Ann had a memorial mass in honor of her brother and father, who both died in October. Attending mass is not an easy endeavor for Peter and I. I believe some people turn to God for strength and comfort during and after cancer. However, I am still struggling with how God allows children to get cancer, suffer, and die. The cliche.... with God all things are possible, did not play out too well with Mattie. So spirituality is something that I continue to personally struggle with. Yet I know that today's mass meant something to Ann and Mary (her mother), so we most definitely wanted to support them.

One of Mattie's HEM/ONC nurses, Melba, attends Ann's church. Each time we go to church with Ann, we see and reconnect with Melba. Today was no different. We spoke with Melba, her husband, and son after mass, and Melba told me about a teen at the Hospital who just lost his cancer battle yesterday. I do not think this is something any of us can ever get over hearing about, and I could tell Melba was deeply upset about this loss. Melba was one of Mattie's night nurses, and she was an absolute peach. I told her today that I don't know how she does the work that she does, but that I am glad she does it. It takes a special person to be a HEM/ONC nurse. Not everyone is cut out for this type of profession. It requires the right balance of skill and compassion and as a parent who fought the battle right along side of Mattie, I can rightfully say that without fine nurses we would have never survived. These women became our family and helped us under the most horrific conditions. Cancer bound us together, and though we do not see each other as often or at all, this connection remains within us. Seeing Melba today reminded us of this.

Nonetheless, today was challenging. It is sometimes difficult to have to face our reality. Our reality is we live in a world filled with parents and children, and yet we walk around with our child only in our hearts. At times this discrepancy between us and others is painful and overwhelming to accept. After mass, we went with Ann and our friend Tanja to an Oktoberfest held at a local school. Tanja was born and raised in Germany, so I asked her about the origin of Oktoberfest. I had NO idea that the original festivities occurred as a result of a royal wedding. I included some information about Oktoberfest below which I found very interesting.

Crown Prince Ludwig, later to become King Ludwig I, was married to Princess Therese of Saxony-Hildburghausen on 12 October 1810. The citizens of Munich were invited to attend the festivities held on the fields in front of the city gates to celebrate the happy royal event. The fields were renamed Theresienwiese ("Theres'a Fields") to honor the Crown Princess, although the locals have since abbreviated the name simply to "Wiesn." Horse races in the presence of the royal family marked the close of the event that was celebrated as a festival for the whole of Bavaria. The decision to repeat the horse races in subsequest years gave rise to the tradition of Oktoberfest. In 1811, an added feature to the horse races was the first Agricultural Show, designed to boost Bavarian agriculture. The horse races, which were the oldest - and at one time - the most popular event of the festival are no longer held today. But the Agricultural Show is still held every three years during the Oktoberfest on the southern part of the festival grounds.  In the first few decades, the choices of amusements were sparse. In 1818, the first carousel and two swings were set up. Visitors were able to quench their thirst at small beer stands, which grew rapidly in number. In 1896 the beer stands were replaced by the first beer tents and halls set up by the enterprising landlords with the backing of the breweries. The remainder of the festival site was taken up by a fun-fair. The range of carousels offered was already increasing rapidly in the 1870's as the fairground trade continued to grow and develop in Germany.

While at Oktoberfest, Ann brought along her friend's preschooler. This little girl is perhaps four years old. At one point I took her on the playground to play while others were waiting on line to get us food. On the playground, I helped her on the swings, the slide, and then finally I noticed she was interested in the obstacle courses made of hay that two little boys were assembling. When I asked her if she wanted to play with the two boys, she nodded her head.... yes! So I went over to the two boys (who were NOT unlike my Mattie and his buddy Zachary) and introduced them to the little girl. I had them all exchange names and then asked them whether she could join in their play, since she really liked what they were doing. They seemed to like the compliment and the next thing I knew we too were participating in the construction of the obstacle course and then running through it. Raising Mattie taught me two very important skills on the playground.... one is how to get other kids to talk to each other and buy into each others play scenarios and two, I am very good at reading the physical cues of children. Some are more shy, timid, or unsure of their physical abilities. They want to participate, but may need physical support to do this. This little girl was younger than the two boys she decided to play with, so she couldn't climb and jump from some of the obstacles they created without having a hand to support her. The whole playground experience today reminded me of my time with Mattie, and I can personally feel a level of conflict within myself. One part of me would like to isolate myself completely from children and their families and the other part misses it and gets some sort of satisfaction from these interactions. So at the end of the day, I am left feeling confused and at times upset.

While writing the blog tonight, Peter was working outside in our garden and when he came back inside he asked how I was doing. It did not take long for me to respond in tears. We did go for a walk together and on our journey this grasshopper jumped out at me. I couldn't help but naturally jump and then laugh. Another Mattie sign, sent in bug format!