Saturday, August 17, 2013

Saturday, August 17, 2013

Tonight's picture was taken on my birthday in July of 2009. Mattie, with the help of Peter's parents, created for me this beautiful lighthouse birthday card. In honor of my love for lighthouses. This was a very special gift and moment in time. Of course at the time, I felt overwhelmed with Mattie's diagnosis and care. Now of course knowing what it feels like to lose a child to cancer, I long for the days we were battling cancer together. When I look at this photo, I can see what our living room used to look like. During Mattie's cancer battle, our home looked more like a storage facility, or an unorganized toy warehouse. At times I still get frustrated that I haven't made much progress with organizing Mattie's things. Then I see a photo like this, I realize just how much we have accomplished. Mattie's cancer affected every part of our lives, including our home. Our home really mirrored the toxicity of our lives.


Quote of the day: If you haven't any charity in your heart, you have the worst kind of heart trouble. ~ Bob Hope

When I woke up this morning, I received this beautiful photo from my lifetime friend, Karen. This amazing structure exists in the hotel Karen is staying at in Madrid. What caught her attention were the butterflies. Apparently this dome of windows sits above the hotel's dining room. Incredible no? Karen knew I would love it and she was right. It is lovely to get daily photos and be able to see the cathedrals, palaces, and landscapes that Karen is seeing in Spain. This photo seems ethereal to me and captures the spirit of Mattie!

 






Breland Emory's YouTube video, which I posted at the top of Mattie's blog, went viral two days ago. In just this short time period, there have been over 10,000 viewers of this video. In fact, Lauren's mom told me today that Lauren is getting many Bows for Hope requests on her website. People are buying bows from ALL over the world, not just the United States! This speaks to the power of the internet and the creativity of two wonderful teens. We are very proud of Lauren and Breland.

Peter and I did some chores together today, but for the most part we are both under the weather. I am taking all sorts of decongestants but I still feel like my head is floating in fluid and I am very lethargic. I am signing off for today, and hope to feel better tomorrow.

Friday, August 16, 2013

Friday, August 16, 2013

Tonight's picture was taken in May of 2004. That day we took Mattie down to the Washington Mall. At the Mall, we paused in front of the reflecting pool. We were intrigued by the ducks and ducklings. Mattie just loved this spring time sighting. "A mama with her babies," was what Mattie would always say, followed by, "that is just like you and me." Though there was only inches of water in the reflection pool, I always had a grip on the back of Mattie's pants when he was near water. The ironic part was I always tried to protect Mattie and thought ahead about potential issues or problems that could arise. Cancer was not in my contingency plan, it was the furthest issue from my mind, that is of course until July of 2008.


Quote of the day: And for the briefest instant, it almost feels like we're together again. ~ Nicholas Sparks


During the month of August, the licensure board that I serve on takes a break. Nonetheless, as board chair, there are always issues and responsibilities to perform even when there are no official meetings held. So I went to the licensure board department today and reviewed licensure applications for over two hours. When I returned home this is what I saw!!! This is a mom and dad dove pair, sitting right outside Mattie's window. In fact, while I was upstairs this morning getting ready, I heard their distinctive WHOOO WHOOOO call! As you can see, I caught the dad dove flying away...an action shot. This photo could almost be entitled, "caught in the act!" The female dove is sitting on twigs and looks to be making a nest.

Doves are monogamous, producing two squabs (young) per brood. Both sexes incubate, the male from morning to afternoon, and the female the rest of the day and at night. Mourning Doves are considered devoted parents and their nests are very rarely left unattended by the adults. Mama dove has yet to lay her eggs, but it seems to me that is the next step in the process. As I mentioned last night, the last time we had doves build a nest on our deck was in 2009. Mattie was alive, but his situation was terminal.

On August 5, 2009, we learned that Mattie's battle was coming to an end and that his cancer spread everywhere. The 5th is a challenging day for us and yet when I see these MOURNING doves roosting in August, the month Mattie's cancer spread, I can't help but think about Mattie. As tonight's quote says, "for the briefest instant, it almost feels like we are together again." I am not sure why these doves came to our deck, why they choose Mattie's windowsill (rather than a flower box or tree --- which is more typical of doves), or why they do not seem the least bit bothered by my presence as I visit our garden on our deck.  

As the photo with Mattie above indicated, Mattie loved nature as well as getting to know all sorts of living creatures. I have no doubt he would have LOVED, absolutely LOVED, this dove pair roosting outside his window. Most likely he would have started his day and ended his day by checking on the doves. Doves that are literally roosting inches from his bed inside the window.

Thursday, August 15, 2013

Thursday, August 15, 2013

Tonight's picture was taken in January of 2009. Peter and I took Mattie to New York City to start an experimental immuno- therapy treatment at Sloan Kettering. A treatment that had to be started in NY, but was continued for seven months thereafter (twice a week) at Georgetown Hospital. While in NYC, Georgetown University Hospital arranged for us to see the Lion King. We had six front and center orchestra seats to see the musical. Not only did we see the show, but after the show, we got to meet the cast and stand on the stage. Karen, my lifetime friend, and Emily, Mattie's babysitter and her husband joined us. It was a very memorable night for all of us. In fact, while Mattie was watching the show, he was bouncing around in his seat, dancing to the music. Music brought Mattie happiness, which was actually amazing given all he was dealing with at the time. The fact that Mattie could smile here was a testament to his fortitude and strength.


Quote of the day: In our time together, you claimed a special place in my heart, one I'll carry with me forever and that no one can ever replace. ~ Nicholas Sparks

Yesterday, I received an email from Lauren. Lauren is 15 years old, an osteosarcoma survivor, and one of our Mattie Miracle Faces of Hope. Lauren battled osteosarcoma at the same time as Mattie. In fact, they were diagnosed just a week apart from each other. Lauren lives in Pennsylvania and of course we live in DC. So you maybe asking yourself, how were they connected? After all Lauren was NOT treated at Georgetown. Our families connected through Mattie's blog. Lauren's aunt found our blog and then told Carey (Lauren's mom) about it. Carey reached out to me and I am so happy she did. We went through chemo and surgeries together, not physically but virtually. We understood each other's fears and concerns and of course we also understood each other's level of exhaustion. I remember we would write to each other often as I was sitting in Georgetown's PICU and Carey was at St. Christopher's in Philadelphia.

When Mattie died, this impacted Lauren. How could it not?! Children are not supposed to die and of course Lauren knew Mattie died from the same disease she was battling. A daunting notion! Most teens would probably acknowledge that Mattie died, put that somewhere, and try to move forward with their lives. NOT Lauren! Instead, Lauren became an activist. She brings awareness to childhood cancer both in her school and community and she also created her own non-profit called Bows for Hope (www.bowsforhope.com). Lauren uses her creativity to design hand crafted duct tape bows in almost every pattern imaginable and sells them on her website. Where do her proceeds go? Directly to Mattie Miracle! Over the past two years, Lauren has raised thousands of dollars for Mattie Miracle. We fell in love with Lauren in 2008, when we started communicating with her mom, but once we met Lauren in person, she had us hooked. Lauren is a beautiful young lady, sharp as a tack, creative, generous, and has a heart of gold. I can't say enough about Lauren.

Lauren took the initiative to reach out to Breland Emory. Breland is 17 years old and a beauty guru on the internet. She clearly has quite a following, which is evidenced by her over 87,000 fans. Breland, like Lauren, is absolutely adorable. She covers all sorts of beauty issues that are applicable to teens and when you watch some of her videos, even as an adult, she inspires you to try some of her hairdos. Though, as I said to Breland in an email, it helps to start with great hair.

Lauren was looking for other avenues to promote Bows for Hope and to raise funds for Mattie Miracle. Which is why she wrote to Breland and told her about her bows and about Mattie. Breland was so moved by our stories that she created a youtube video about us and featured Lauren's bows. In fact, she and Lauren designed a special edition glitter bow in honor of childhood cancer awareness (seems quite appropriate since September is Childhood Cancer Awareness Month!!!). I encourage you to check out Breland's video. Given the demographics of the audience she reaches, I think she presents a very serious topic in a way that is totally non-threatening and in fact she encourage teens to buy bows to support childhood cancer awareness. Or in other words to take a stand. To see Breland's video, click on this link: 
http://www.youtube.com/watch?v=-MCvlQpiRss

I began my morning by hearing doves! Literally I was sitting at my breakfast table, and all I could hear was WHO WHOOOOOO!!! WHO WHOOOOO!!! To me this is what a dove sounds like. Later in the morning, I  went upstairs and looked out Mattie's window. This is what I saw. Two doves perched on Mattie's windowsill. To me doves are very symbolic. They are called mourning doves for a reason. The only time Peter and I saw doves on our deck was when Mattie was dying. Specifically we had a mother dove nest in our flower box in the summer of 2009. She sat on her eggs for days. This occurrence never happened again! When I saw these doves this morning, they reminded me of the time we had Mattie in our lives. To me they were a sign that Mattie was with me. It seems ironic to me that these doves flew right to Mattie's window and hung out.

I began tonight's posting with a picture of Mattie in front of a Lion King poster. Now I am not ending tonight's posting with a different Lion King poster. This one is being displayed in Madrid, Spain. My lifetime friend, Karen, is in Madrid and today she sent me this photo. When Karen and I go on vacation, we always send each other photos. This way it is like we are both able to experience the moment even though only one of us is on location. When Karen sent me this photo tonight, she reflected on our time in January of 2009, when we took Mattie to see the Lion King in NYC. In fact, I can't think of the Lion King without associating it with Mattie and cancer.


 

Wednesday, August 14, 2013

Wednesday, August 14, 2013

Tonight's picture was taken in August of 2007. Mattie was in Coronado, California. In the back drop of this photo was the Del Coronado Hotel. A very historic and grand Victorian lady with her iconic red turrets! Peter took Mattie bicycle riding around the island and he snapped this wonderful photo. Mattie looked so happy and the picture of health!

Quote of the day: We sit silently and watch the world around us. This has taken a lifetime to learn. It seems only the old are able to sit next to one another and not say anything and still feel content. The young, brash and impatient, must always break the silence. It is a waste, for silence is pure. Silence is holy. It draws people together because only those who are comfortable with each other can sit without speaking. This is the great paradox. ~ Nicholas Sparks


I remember when I was in graduate school and studying to be a mental health professional, the topic of SILENCE came up often in our clinical coursework. Students and new professionals naturally find silence awkward and uncomfortable. The instinct is instead to talk through the silence. To break it up and to add noise into the counseling session. Most of us are intimidated by silence, but as a mental health professional we know that people are paying for our services, therefore silence is sometimes perceived as a waste. A sign of being unproductive! But this is actually NOT true. Silence can be used to achieve many things clinically. Putting the clinical angle aside, I know that in my own personal life there are only a handful of people I can be silent around.

I know when I was in my 20s and I would see older couples sitting together in silence, I felt bad for them! I wondered what was happening, do they not have anything to talk about, do they not find each other interesting anymore, and the list of other questions swirled around in my mind. However, after experiencing Mattie's cancer and his death, I find that there are times Peter and I do sit in silence. It isn't a matter of the fact that we don't want to talk to each other or we have nothing to say, it is simply the fact that we have been through a lot together that we are okay with the silence. We understand our silences and as I joke often, I feel like Mattie's death has aged us. Maybe physically, but most definitely emotionally. Some couples may need 50 or 60 years together to be able to truly get the other. Whereas I feel having outlived Mattie has forced Peter and I to face the impossible, to live through the impossible, and to address issues most married couples don't face. The death of a child ages a couple, matures a couple and if the couple is able to survive this loss, there is most likely something to be said regarding this bond. It is a bond that has endured one of the greatest tests in life. A test that even supersedes time.

Though I am still not feeling 100 percent today, I met up with a friend I hadn't seen since Mattie's death in September of 2009. I won't go into detail about this individual, but she played an important role in our lives and helped us with Mattie tremendously. Though we no longer live in geographic proximity to each other, we still email with one another. Mattie's battle introduced Peter and I to some amazing women. Women who I will never forget and who we will always be indebted to. As clinicians (whether medical or mental health) we are always taught about boundaries and the importance of establishing them, but I must say when dealing with life and death issues, boundaries do go out the window. Thankfully they did because we truly needed all the support we could get when Mattie was sick and dying. It is hard to see a six year old fighting for his life and undergoing horrendous treatments and yet remain neutral and cold as a care provider. Mattie was the kind of kid who could easily break down professional barriers. As Peter would say, "to know Mattie was to love him and sooner or later Mattie would get to you."

Mattie may have died almost four years ago, but to me there are aspects of the battle that are alive and well inside of me. The relationships that we formed during this battle will always be precious to us, almost as if we all served in the same military troop and fought in a war together. It wasn't your typical war, this war involved an internal threat..... the cancer within Mattie's body. When members of the "Mattie troop" get together, especially now that Mattie is gone, it helps us keep his memory alive.

Tuesday, August 13, 2013

Tuesday, August 13, 2013 -- Mattie died 204 weeks ago today.

Tonight's picture was taken in August of 2007. As you can see Mattie was swimming independently to Peter. This was a major summer accomplishment! 
In all reality it was the summer of 2007, that Mattie mastered swimming. Though I do not like the water or swimming for that matter, I felt it was important for Mattie to know how to swim. It is an important skill and a safety skill. Mattie had taken several group swimming lessons but did not make much progress. He had a healthy fear of the water. So that summer, I got a family membership at the George Washington University pool. A pool located not on their main campus. Any case, almost every afternoon, I would take Mattie to the pool and we would work on swimming. Mind you I don't really like getting into pools, but I was motivated. My efforts that summer paid off because by August, Mattie could do exactly what you see in tonight's photo!

Quote of the day: Our story has three parts: a beginning, a middle, and an end. And although this is the way all stories unfold, I still can't believe that ours didn't go on forever. ~ Nicholas Sparks


I am a huge Nicholas Sparks fan. Some people may like his fictional stories because of how he captures the essence of love and relationships. Though I appreciate that, what I love most about his writings is how he expresses loss and grief. In fact I fell in love with Sparks' writing style while I was in college. Way before cancer was my reality, and the death of a child was my life story. Tonight's quote is indeed my daily struggle. I have a life story with a typical beginning and middle. The end however was not something I would have ever dreamt of or planned. Yet with the death of Mattie, it forces me to have to reinvent my story. It forces me to try to find a new beginning, a new middle, and to work to a new end. However it isn't so simple. Unlike other couples who may have elected not to have children, we DID have a child. Once you have a child in your life, the story is pretty much set. Your story revolves around your children! Now that Mattie isn't in my life, there are days I feel like I don't have a story at all.

In fact, today is one of those sad days for me. Certain things trigger my sadness, and it usually involves my perception of not fitting in. My feeling that others around me are living a life that was supposed to be part of my story. I did not ask for the story to be changed and sometimes I resent that others are able to continue their stories and yet I can't. Call that bitterness, call that immaturity on my part, call it mean. You can call it what you want! But my feelings are not meant to make others feel bad, they simply are meant to describe my inner most feelings.

Later today, I received three messages from newly formed friends. One friend told me she "loved me," which if I told you the context of why she said this, you would understand. The other friend told me that I can't stop writing the blog. That my writing is a "miracle" in and of itself. Mainly because it shares Mattie with others and it gets my readers to think about their own lives and how to make meaning for themselves. The third message was an invitation to join my friend in an art class. This friend knows I can't paint or draw, like she can, but she feels that I could be a budding artist. I say it often on the blog, but words are powerful instruments! Kind and thoughtful messages like the ones I received today do help me out of the funk I can easily fall into. Especially when I am not feeling well. I am currently running a fever and feel run down. So I am signing off for tonight, but I leave you with the notion that I may not know what Mattie wanted his legacy to be, but I do know creating his legacy is part of my life story.  

Monday, August 12, 2013

Monday, August 12, 2013

Tonight's picture was taken on July 25 of 2009. This was the last birthday I celebrated with Mattie. Linda, Mattie's child life specialist, bought this cake so that Mattie could celebrate and sing happy birthday to me. I remember this moment in time like it were yesterday. To me, Mattie looked physically better and the fact that he could even smile after all he had been through was a feat or a miracle. A Mattie Miracle! However, less than two months after this photo was taken, Mattie died. It is a hard reality to continue to face no matter how many months or years go by!



Quote of the day: I love you more than there are stars in the sky and fish in the sea. ~ Nicholas Sparks


When I saw Nicholas Sparks' quote today, it reminded me of what I always used to say to Mattie. My line to Mattie was that "I love you to the moon and back!" Mattie loved that notion and when he first heard me say it, he literally tried to figure out the distance between the moon and back! He wanted to know just how much love that represented! Over time, he realized that it basically was A LOT of love, and he was happy with that! During tender moments, Mattie would tell me that he loved me to the moon and back too. It seems rather symbolic in a way that we called Mattie, "Mattie Moon" and that we used the moon when he was alive to mark the distance or amount of love we had for each other. In so many ways, the moon in the night sky represents Mattie to me, and when I see it shining it reminds me of the long distance love we have for one another.  

Peter and I are still on Mediterranean time! I got up at 5am and couldn't go back to sleep. Instead of fighting it, I just got up and proceeded on with my day. But now that it is 4pm, I feel exhausted. I have to fight going to sleep now!!! Today, I received a lovely email from a friend and colleague of mine. She sent me a "just because" email. Or in other words, an email for no specific reason or occasion other than to say hi and that she was thinking of me. That put a smile to my face! As did so many emails I received in the past day or so from friends welcoming me back.

On an aside, when Peter and I checked into Heathrow Airport on Saturday, the ticket agent printed out our boarding passes. As we were walking away from the counter, Peter stopped and said something was wrong. So I followed him back to the counter. The ticket agent gave him a boarding pass for a "Paul Brown" going on a different flight. Honestly! Talk about a security issue. She corrected the issue and apologized for her mistake, but his mistake has followed us all the way home. While boarding the plane, Peter's boarding pass was scanned into the computer, however it wouldn't scan in. Nonetheless, he was allowed onto the plane. Got to love that security breach too, no?! While sitting in our seats, a flight attendant came up to us and asked to see Peter's board pass. She said it appeared according to the computer that he wasn't in his seat. The passenger sitting next to me, had a sense of humor and literally he pinched me on the arm and said.... "no she is VERY much here!" The flight attendant looked at our boarding passes and gave us the okay. Peter checked on-line with United today to make sure we got credit for our flying miles and guess what?! According to United Peter never took the flight home with me. The whole thing is funny if it wasn't true!!!! Thankfully we kept Peter's boarding pass! But this is a lesson to all travelers, check your boarding pass before walking away from the counter. Mistakes happen and once they are made it follows you throughout the entire flight. I am just happy Peter's luggage made it home and did not go with Paul Brown to whatever destination he was headed!
 

Sunday, August 11, 2013

Sunday, August 11, 2013

Tonight's picture was taken on August 9th of 2009. Mattie and his friend Abbie went to the Lego store located within our local mall. Linda, Mattie's Child Life Specialist, arranged for this very special visit. After store hours, two Lego master builders met with Mattie and allowed him to create whatever he wanted in the store. Linda understood Mattie was dying (in fact, a month after this photo was taken, Mattie died) and wanted to give him a special evening. Given that Mattie LOVED Legos, this was a wonderful and memorable outing for all of us. You can see the finished product that Mattie and Abbie created together with the help of Lego master builders. What you need to know however was that Mattie did not want to build a structure from a kit (I imagine because by that point Mattie had built just about every kit in the store while battling cancer). He wanted to design his own creation and he chose a NYC taxi. Most likely he selected a yellow taxi because he had recently visited New York City during his experimental treatments at Sloan Kettering. We still have Mattie's taxi with us today. It sits on a wrought iron rack that we have in our living room. A rack that displays many of Mattie's creations!

Quote of the day: Sometimes you have to be apart from people you love, but that doesn't make you love them any less. Sometimes you love them more. ~ Nicholas Sparks

Peter and I tried to stay awake for as long as possible last night. However, neither of us slept well and we were up very early. We continue to be on Mediterranean time. When I woke up this morning, I did not know where I was. In fact, I thought I was still on a ship. I feel as if I am bobbing up and down in the water and my head and body haven't adjusted to solid land yet. I have found that post-cruises, I always need to take Dramamine for several days afterwards. If I don't, I get seasickness. I am sure there is a logical explanation for this occurrence, but I am not researching it. I am simply accepting it and base this knowledge on my past experiences.

We completed several important chores today that we all have to do when coming back from a vacation.... laundry, grocery shopping, going through mail, and in our case caring for all our plants. Our friend Maria watered all our green friends while we were gone for 18 days. She did a fantastic job, our plants really respond to her and they grew leaps and bounds while we were away. It is SO special to come back to greenery! In fact, since Mattie's death, greenery is vital to us. It is the only living thing around us that we care for. Therefore, when I have come home in the past and found dead plants, I was besides myself. I am grateful that Maria and our plants get along so well and that they not only thrived but grew while we were away.

I may be off the Ship and back in the USA, but Peter is still amusing me with expressions we picked up from our fellow British passengers. For the life of me, I heard the word "cheers" more often than I could count, and I learned that cheers means thank you! Here are some other fun words we learned along our journey!

British word --- Our American translation!!!

wellies - rain boats
no worries - you're welcome
jacketed potato -baked potato
lift - elevator
aubergine - eggplant
banger - sausage
bonnet - the hood of one's car
chaps - men or boys
chips - French fries
water closet - bathroom