Saturday, September 29, 2012

Saturday, September 29, 2012

Tonight's picture was taken in June of 2008. We took Mattie to Roosevelt Island to walk around and explore. Mattie enjoyed climbing on the rocks, so I decided to take a picture of him that day. Whenever we walk the Island now I remember this moment with Mattie as if it were yesterday.


Quote of the day: Three grand essentials to happiness in this life are something to do, something to love, and something to hope for. ~ Joseph Addison

I grew up in a suburb outside of New York City and at the age of 14, my family moved to Los Angeles. This relocation was challenging for us because we had to leave behind family and friends. During the first couple of years after we moved, we spent a great deal of time during school vacations flying back and forth to New York. We missed our "home" and everything and everyone we held dear. During our trips back to NY, we stayed at one of two different hotels. These two hotels hold fond memories for me, because they are symbolic of reconnecting and being "home." It is no surprise, when Peter and I got married years ago, I asked that this special occasion take place in New York. Our wedding guests and party stayed at one of the hotels and at the other hotel, we hosted our rehearsal dinner (the night before the wedding). Last night, Peter and I stayed at the hotel we had our rehearsal dinner. This morning we had breakfast at the hotel before getting back on the road to drive from New York to Cape Cod. The hotel is nestled on 30 acres of scenic countryside in Westchester County, and as you can see the Hotel's restaurant captures the lush terrain beautifully.

After we packed up the car, we walked to the Red Oak Mansion. This Mansion is on the Hotel's property and this is the exact location where our rehearsal dinner took place.  

This is what it looks like inside the Red Oak Mansion. The Mansion was built in 1905 and was once owned and designed by New York City architect John Carrere, designer of the New York City Public Library. This summer home has many of the beautiful features of the original building including a stunning patio with beautiful stonework, cozy fireplaces and abundant windows overlooking the scenic grounds.

I have to say driving through Massachusetts always gets me laughing. It gets me laughing because there are some classic identifiers that immediately tell me where I am. The first is seeing Red Sox stickers and merchandise hanging from cars and the second (and not necessarily in this order!!) are Dunkin Donuts stores. Picture Dunkin Donuts stores at EVERY rest stop on the highway and practically in every town you stop at. I literally should have taken a count of the number of stores we visibly passed from Westchester County, NY to Cape Cod. We are seriously talking double digits! Now if this wasn't funny enough, here is an absolute first for me. On Peter's GPS, it actually alerted us to each Dunkin Donuts store we were passing. Keep in mind that we did not ask for this information and the GPS did not flag other establishments we were passing like McDonald's or Starbucks for example. I was truly perplexed and asked Peter why this was happening for just Dunkin Donuts!

Last October we stayed on the Cape, and this year we decided to return. Peter spent many summers as a child on Truro (a part of the Cape that is close to Provincetown). Truro is very different from anything I have ever experienced before mainly because it is so preserved, natural, and untouched by modern progress. It is like taking a walk back in time. The loudest thing in Truro is the wildlife. This is the charming house we are staying at this week.

The house itself is cozy and charming, but one of the things that sold me on the house was the view from the house's deck. This is the Pamet Marsh, which is part of the Pamet River, which leads out to Cape Cod Bay.

Here is our resident Great Blue Heron. He hung out for most of the day in the marsh catching fish. The peace and tranquility of Truro in a way is very medicinal and Peter and I are both stressed out for different and the same reasons. Despite it being cool and rainy, being removed from traffic, our everyday environment, and at times internal chaos are very needed. It is my hope that these sights and sounds help me lose the violent headache I have had for about seven days straight.

Friday, September 28, 2012

Friday, September 28, 2012

Tonight's picture was taken on July 9th of 2008. Just two weeks before Mattie was diagnosed with cancer. We had absolutely no idea how our life was going to change back then as we were walking on Roosevelt Island. When I look back and reflect, I realize that prior to Mattie getting sick I worried about silly and inconsequential things. Cancer has put everything into context for me.









Quote of the day: Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow. ~ Mary Anne Radmacher


If my maternal grandmother were still alive, she would have celebrated her 105th birthday today. My grandmother died in 1994, and yet I still remember. I grew up living with my parents and grandmother in a multi-generational household, and it was from my relationship with my grandmother that I learned to appreciate the beauty of older adults. I know some people feel uneasy talking or working with older adults, but for me it is like second nature.

I began my morning by meeting with the two lovely ladies in this photo, Whitney and Lesley. Whitney and Lesley are the "dynamic duo," I have mentioned before on the blog. They were two of Mattie's favorite Child Life Interns at Georgetown University Hospital. Whitney and Lesley got to know every member of our family and assisted us in so many ways when Mattie was hospitalized. Recently I reported on the blog that one of Mattie's Child Life Interns lost her father to a sudden heart attack. The intern in question is Lesley. Lesley and I relate to each other greatly over the devastating losses in our lives and I was happy we could get together as a threesome and hear more about Lesley's dad, how he died, and how she is coping with this great loss. Mattie connected me with Whitney and Lesley and I am so glad to know women of this fine, sensitive, and compassionate character.

While we were having breakfast in a cafe at Georgetown, I recognized the man who sat down at the table next to us. It was Cesar Milan. For those of you who may not know who Cesar is, he is a dog behaviorist and has a TV show on the Discovery Channel. He is the "Dog Whisperer." Cesar teaches dog owners how to be "calm and assertive" with their dogs. I find his show intriguing because as he states he "rehabilitates dogs and trains people!" As we finished breakfast and got up to leave, I went over to Cesar and said, "Mr. Milan, I could not leave this restaurant today without letting you know I am a big fan. I do not own a dog, but I am a mental health professional who works with people, and I am intrigued with the perspective you take in helping people resolve some of their own issues as they learn to manage their dog's behavior." Cesar was actually very humble and speechless, almost as if he wasn't sure how to answer me. But he thanked me for coming over and I could tell he felt pleased that his work was being admired.

After breakfast, I headed home and packed up for our trip. The fun began when we had to find Patches (our calico cat), put her in her cage and board her at the vet. She was less than pleased with us and has become an expert in hiding! Once on the road, we hit intense traffic, but we did make it to the suburbs of New York in four hours. It is much colder here than in DC, so it was a rude awakening for me.

This evening, we met up with my lifetime friend, Karen and her mom, Naomi. We haven't had the chance to get together like this for many years, so this was a special gathering which gave us the time to catch up on each other's lives. Though we communicate with each other often by email, that is a different connection from a face to face meeting. Karen's mom lost her husband at a very young age. What I notice is in many ways she understands some of the pain, thoughts, and feelings I express often on this blog. It is funny, all my life Naomi has been Karen's mom, but from losing Mattie, I have a better insight into her life, and in a way our losses have connected us as friends. At dinner, Peter snapped a picture of us. I am signing off for today, tomorrow I will be writing from Cape Cod.

Thursday, September 27, 2012

Thursday, September 27, 2012

Tonight's picture was taken in April of 2009, during Mattie's 7th birthday party at the Hospital. What I love about this picture was the whole scene. Mattie and his friends were wearing goggles because they were doing one of his favorite things.... excavating and chipping away through sand and clay to reveal plastic toy dinosaurs. You can almost sense the excitement and the intrigue in this picture. I will always remember this day as if it were yesterday.


Quote of the day: People are often unreasonable and self-centered. Forgive them anyway. If you are kind, people may accuse you of ulterior motives. Be kind anyway.  If you are honest, people may cheat you. Be honest anyway. If you find happiness, people may be jealous. Be happy anyway. The good you do today may be forgotten tomorrow. Do good anyway. Give the world the best you have and it may never be enough. Give your best anyway. For you see, in the end, it is between you and God. It was never between you and them anyway. ~ Mother Teresa


What I love about Mother Teresa's quote is that doing good, being kind, honest, and forgiving, must come from within. We need to follow our instincts, even when perhaps the world around us doesn't support our motivations. At the end of the day, we have to be happy with ourselves and how we live our own lives.

In the course of today, I went to visit Ann's mom, Mary. Before I got to Mary's room, I bumped into Catherine. Catherine is another resident at Mary's assisted living facility who I have gotten to know. A few weeks ago, when I bumped into Catherine, who was recovering from a surgery, she had absolutely NO recognition of who I was. I was deeply saddened by this because she is one of the younger and more cognitively intact residents on the floor. When I saw Catherine in the hallway today, I could have easily passed her by without her noticing. But I didn't do that. I figured even if she didn't remember me, she would still appreciate talking to someone. So I went over to Catherine and said, "do you remember me?" With that, Catherine said, "of course Vicki I remember you!" It was a riot, because it was in that moment I saw the Catherine I used to know! I explained to her what happened a few weeks ago when I saw her and we got to talking today about her surgery and how it has impacted her memory. She is very frightened by these changes. We talked for about 20 minutes but I could tell she was getting tired, needed oxygen, and had to go back to her room. However, before we parted she began to cry. So I held her hand, continued to listen, and then told her that I do not think her life is meaningless. She is a bright woman who has been dealt a very hard plight in life. One I wish she did not have to experience. I could sense how alone and isolated she felt in her condition. While I was with Catherine, the activity coordinator for the facility came up to talk with us. Clearly Catherine was upset, but he proceeded to ask her how she was doing. I wanted to say.... are you kidding? How do you think she is doing! So she responded to him by saying, she got up and changed her clothes today. He did not know how to respond to that. So instead I stepped in and said, "Catherine, one must celebrate the small victories." With which she smiled and agreed.

Catherine in her own right is grieving. She may not be grieving the loss of a child, but she is grieving the loss of her mobility, her cognitive ability, and basically what she expected her life to be like. She told me that she has observed herself becoming a nasty person. She isn't happy about it and feels guilty as well. It is funny though how pain and grief can produce such horrible emotions. I see them within myself at times, which is why I feel I have a glimmer of insight into Catherine's situation right now.

After visiting with Catherine, I went in to see Mary. I was told that Mary was having a rather mute day. Yet when I walked into the room, she smiled and began talking. She saw that I had a bag with me filled with lotions. My nickname is apparently "the lotion lady," so I figure I better live up to my name. We chatted about all sorts of things today, read articles and looked at greeting cards she received. Toward the end of the evening, Mary thanked me for visiting her and reminded me that I am her "angel." I apparently have been her angel for a long time now. Which is touching. As I tell Mary often, we were meant to meet each other and help each other through our grief. Before I left, Mary wanted me to know that she prayed very hard for Mattie and was upset that he died, and then she began crying. So we talked about Mattie and "our boys." Our boys are comprised of all the men recently lost.... Mattie, Mary's son, Mary's husband, Mary's cousin, and Mary's brother. Mary's ultimate question is why weren't the prayers for any of "our boys" answered? An excellent question, and as I remind her, I have absolutely NO idea, and better yet I simply don't understand why or ever will.

Tomorrow Peter and I begin our journey to Cape Cod. However, instead of driving directly there, we will be spending the night outside of New York City, where we will be visiting with Karen and her mom. Peter and I will be staying at the hotel we had our wedding rehearsal dinner at, so in a way this will be quite a nostalgic visit.

Wednesday, September 26, 2012

Wednesday, September 26, 2012

Tonight's picture was taken on April 4th of 2009, right after Mattie's 7th birthday party at the Hospital. Two of Mattie's friends, Charlotte and Abbie, stayed after the party and came back to Mattie's PICU room with him. It is interesting to me, that the girls were in the moment of the celebration and were engaged with all the balloons, that they did not seem to mind that they were sitting on a hospital bed. It is also quite possible that over time these girls just got used to these surroundings, since they visited Mattie often. It was always heartbreaking to see friends of Mattie's walk into his room, and be scared out of their minds by all the sights and sounds. Visiting a PICU is not for the meek but I am happy that those who could tolerate it, visited and played with Mattie. Entertaining a child who is hospitalized long-term is very challenging, after a while the child's parent becomes boring and other stimulation is very needed. Stimulation like you see in tonight's picture will never be forgotten.


A TRIBUTE  by Nancy Heller Moskowitz

Butterflies are free,
But, we are not when we are grieving.
Our emotions and senses are tainted.
Our hearts broken, slow, if ever to repair.

Friendships are strained,
Only the strong remain, as others return to their own lives.
Tuesday, once another day in the week,
Becomes a marker.

Your body, challenged by physical ailments,
Weakened, so that some days are struggles.
Now, a new message enters.
FORGIVENESS!

This isn't easy to accomplish, forgiving oneself for letting go.
You gave all you could and more.
Mattie forgives as you find;
A penny on the ground,
A butterfly fluttering around you, seemingly, out of the blue,
A picture showing a beautiful face.
Simple treasures that never replace,
However, signs that signal he is forever your child.


I received the poem entitled, "A Tribute" from my friend and colleague Nancy. Nancy actually sent me this poem yesterday to acknowledge the 159th week that Mattie has been gone from our lives. Nancy told me that my blog postings over the last week touched her mind and heart, and as such she was inspired to share her gift of poetry with me. Nancy's tribute captures so many of the feelings and thoughts I have been expressing on the blog. I certainly wasn't expecting to receive this meaningful and thoughtful gift, but it did bring a smile to my face. There is something to be said for spontaneous and unexpected gifts, as if they in some way signify that you were really thought about for no particular reason, other than for being who you are. Needless to say, I hope this poem resonates with you too.

I was very focused on Foundation items today and spent the majority of the day by the computer. Which is a mixed blessing, especially when experiencing intense headaches. One of the many things I suffer from is daily chronic headaches and migraines. Apparently I am one of the lucky 2% of the population who has daily headaches, headaches which research indicates have NO known effective treatment. Most days I just work through the pain, after all I have had 10 years of great practice. But this week, the pain is intense. So intense that it is sometimes hard to sleep. I imagine the stress of September for me gets internalized and goes somewhere, and one of my trigger spots is my head. So with that said, I am signing off for tonight in hopes of getting away from the computer screen. As always, thank you for visiting the blog and checking in with us.

Tuesday, September 25, 2012

Tuesday, September 25, 2012 -- Mattie died 159 weeks ago today.

Tonight's picture was taken on April 4th of 2009. This was Mattie's seventh and last birthday. He celebrated it in the child life playroom at Georgetown University Hospital. Pictured with Mattie is his big buddy Brandon. As my faithful readers know, Brandon is a Lymphoma Survivor and battled cancer at the same time as Mattie. Mattie told Brandon one day at the Hospital, that he considered Brandon his best friend. Mattie felt that Brandon understood him and appreciated him, and therefore even under really bad times, Mattie tolerated Brandon in his room and life. It is ironic that despite their age difference, they both provided something that the other needed. Though Mattie is no longer with us, Brandon is a very important part of our lives and he helps to support us at many Foundation events.



Quote of the day: It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.  ~  Rose Kennedy



Today marks the 159th week of Mattie's death, which is ironic because Peter and I returned to Georgetown University Hospital today to host a Mattie Miracle Cancer Foundation Check signing gathering. In so many ways it is hard to pause and think that just 159 weeks ago today, I was standing on the fifth floor of the Hospital. Instead of being in the childlife playroom talking about the memory of Mattie like I was today, I was in a PICU room standing over the dead body of my son. Rather stark contrasts between 2009 and 2012. But in all reality 159 weeks ago is NOT that long at all. In fact for me Mattie's death, his memory, and his spirit remain alive and well in our heads.

Certainly granting the Hospital a check for $25,000 for a second year in a row is a great accomplishment. Peter and I are proud of this, and are very passionate about funding the Mattie Miracle Child Life Program Fund at Georgetown. A fund that helps to employ Jess Abrams, a Child Life Specialist who helps children and their families on scan and procedure days. Days which are very daunting and stress provoking for the whole family system. This program is run by Linda Kim, Mattie's Child Life Specialist. Our family couldn't have made it without the support of Linda, and in so many ways I know Mattie would have greatly approved of our desire to support her through his Foundation. Yet I must admit, that Rose Kennedy's quote was running through my head today. Today was a happy event, another milestone event for the Foundation, and yet within us we carry pain. A pain that is always there, we are forced to find a way to live with it, and I know no amount of Tylenol or aspirin relieves the symptoms.

In the picture above you saw Mattie with Brandon sitting at the same exact table you see in this picture. We had a check gathering in the child life playroom. This is a room Mattie loved and a room which kept us sane, during very challenging and isolating times. To the gathering, I brought a cake and 24 Mattie cupcakes. Though it is hard to see this, the cupcakes had butterfly candies on top of them. Certainly it would have been easier for me to buy cupcakes, but for me it was important I made them. It is a tribute to Mattie, since these were his incentives to do physical therapy and other tasks he did not want to perform at the Hospital. I must have baked 100's of cupcakes when Mattie was battling cancer. I miss the opportunity to do this for him now, so instead I make his cupcakes so others can enjoy them. I have come to the conclusion that almost everyone likes cupcakes.

 

 

 

The cake also reminded me of Mattie with its butterflies and lady bugs. Mattie liked bugs, but I thought a frosting roach on the cake would not be appreciated unless you truly understood and knew Mattie. Lady bugs were safer! The cake read, "Supporting Children One Mattie Miracle at a Time!"

 

Pictured here from left to right are Brandon, Katie (a Child Life Specialist), Vicki, Linda (Child Life Coordinator), Jess Abrams (Child Life Specialist), Ann (Mattie Miracle Board Member), and Peter.

 

Pictured from left to right are Brandon, Jamie (a HEM/ONC nurse), Meg (a HEM/ONC nurse), Tim (Associate Administrator, Department of Pediatrics/Development), Anita (one of Mattie's outstanding HEM/ONC nurses and HEM/ONC nurse manager), Vicki, and Peter.

 

At the end of our event, Debbi (Mattie's sedation nurse angel) came by to visit. Debbi was in a procedure, but made a point to see us. Pictured from left to right are Peter, Ann, Brandon, Debbi, and Vicki.

 

Monday, September 24, 2012

Monday, September 24, 2012

Tonight's picture was taken in March of 2005. Mattie and Peter were playing with toy plastic food. As you maybe able to determine from this picture, both of them decided to scare me with their bug impressions. My reaction to seeing these bugs made Mattie laugh, and as such, he couldn't help but keep his (right) eye on me.


Quote of the day: Forgiveness is a virtue of the brave. ~ Indira Gandhi

The loss of a child is a very complex and traumatizing grief. I have used the word trauma before on this blog. But I think it is important to know that the definition of trauma according to the American Psychological Association is "an emotional response to a terrible event like an accident, rape or natural disaster. Immediately after the event, shock and denial are typical. Longer term reactions include unpredictable emotions, flashbacks, strained relationships and even physical symptoms like headaches or nausea."

In so many ways, I cope with not only Mattie's cancer battle and death, but also the trauma associated with this battle and death. I was fortunate to be able to have an enlightening conversation among friends today, and I came away from this chat with a new understanding of things. I felt heard and was allowed to express a whole range of feelings without being judged for having them. It is amazing the power of human understanding, and how such a bond and connection can dissipate at times some of the hostility, anger, and insecurities that lurk inside all of us. Within the definition of trauma it states that it can impact relationships, even close ones. Yet through my reflections today, what came through loud and clear in my mind is the word forgiveness.

As a parent, one of our main jobs is to protect our children. In today's world that is a complex notion in and of itself, but when your child gets cancer, you quickly realize just how helpless and out of control you are. Things in your world no longer make sense, and when your child dies before you, you are left a shell of your former self. But on some level I feel I have failed. I failed to help Mattie. This feeling alone can make me angry, bitter, and at times hostile. However, feeling understood, being able to dialogue honestly about some of my fears and insecurities, enabled me to realize that forgiveness must be incorporated into my grieving process. Somehow that seems like a revelation and a new perspective for me.

I am signing off tonight since I have a horrible head cold, and am hoping it doesn't turn into a full blown infection. Peter and I are going to Cape Cod this Friday, and though we just got back from a great deal of exciting summer travel, we needed some sort of retreat to manage the month of September. The month that Mattie died.
 

Sunday, September 23, 2012

Sunday, September 23, 2012

Tonight's picture was taken in September of 2008. This was before any of Mattie's limb salvaging surgeries. In fact, I would say this was probably the happiest we saw Mattie during his battle, because post-surgeries, life changed dramatically for him. His mobility was greatly impacted and this naturally affected how he felt about himself and others. I remember taking this picture of Mattie sitting on this foam puzzle, and even back then I entitled it, "Mattie is on top of the world." 


Quote of the day: The only way love can last a lifetime is if it's unconditional. The truth is this: love is not determined by the one being loved but rather by the one choosing to love. ~ Stephen Kendrick


I love tonight's quote because I feel all of us can relate to it in some shape or form. When we look at love in Kendrick's terms, love may not be as complex as we make it out to be. Mainly because in any relationship that involves love (not just romantic love) a great deal of the bond and connection is determined by the other person who chooses to love us. For love to work, it isn't only about our own feelings and investment in the relationship. Love must go both ways for it to work, and yet what is the key or secret to having a lifetime of love?

It can be harder to love people when you can't see them, spend time with them, or get feedback. Yet the love a parent has for a child I believe is quite different. All of this is not needed, because from the moment your child comes into your life, the love is unconditional and in our hearts we choose to love this being for a lifetime. To me, Kendrick's quote speaks to the reason why I write Mattie's blog. I do not sit and think about this motivation, but now that I am reflecting on tonight's quote, I realize Mattie's blog is the tangible by-product of my choosing to love him. Writing each day requires a certain level of discipline, commitment, and courage to express my thoughts and feelings to an audience. This determination to write at the core is based on my love for Mattie. When I lost Mattie to cancer, the cancer may prevent me from having a relationship with him, seeing him grow, and watching our love evolve, change, and solidify over time. Yet despite this horrific disease, it could never prevent me from being in control of my choice to love Mattie, of my decision to share his stories with all of you, and regardless of his lack of tangible love, I know his love still exists. It exists in every penny, butterfly, bug, and moon I see.