Saturday, April 2, 2016

Saturday, April 2, 2016

Tonight's picture was taken in April 2004, during Mattie's second birthday party. Mattie was in love with trains and therefore it made for the perfect party theme! We do not have many photos with the three of us together, but my mom snapped this photo before the party started and it has become one of my favorites.


Quote of the day: And we wept that one so lovely should have a life so brief. ~ William Cullen Bryant

Peter and I had an 8:20am flight today to Palm Beach, FL. Around Mattie's birthday we always leave town and head to Florida. We leave for various reasons, but mainly because we feel out of place being home. After all no one comes to celebrate the life of a dead child. 

Today's flight was a fiasco. We boarded the plane no problem, but we sat on the run way for two hours. Why? Because of bad storms in the south. In all reality, everyone handled it calmly, which I was happy about. I rather be on solid ground than flying through a storm. This photo was taken on approach to Palm Beach. Which is SUPER humid, in the 90s and overcast. 

Landing was also a pip! As we were approaching Palm Beach and almost three minutes from landing something happened. The landing was aborted. The plane then began climbing into the air and veering away from the airport. I can assure you this was scary! In the world we are living in, all sorts of things crossed my mind.... plane was hijacked or there was a crisis at the airport.

The plane actually flew out to sea for at least ten minutes. Then the pilot told us that there was an emergency on the run away and was ordered to abort the landing. Needless to say, until I saw the plane turning back to land, I was nervous! 

We got to the hotel early today, before check in. So we sat outside for lunch. 

Here is a view of the ocean from our room.

A view of the Intercoastal
from our room. 

Of course day no day would be complete without seeing a wedding on the beach.

Friday, April 1, 2016

Friday, April 1, 2016

Tonight's picture was taken in April of 2009. I remember this moment in time very distinctly! Mattie was having a rough day and then Dr. Gonzales came into his room and she wanted to examine him. Mattie did not want to have any part of this and wanted the doctor out of the room. Clearly the easier option would have been if Dr. Gonzales turned around and left the room. But that was NOT what she did. Dr. Gonzales did not work with Mattie often, but she is bright and understands the art of medicine. She quickly deduced that Mattie was intrigued by things and how they worked. When her pager went off in Mattie's room, it caught his attention. Instead of hiding her device, she took it out, showed it to him, and the next thing I knew she and Mattie were paging people ALL over the hospital. Not only did they build an instant rapport, but Mattie let her examine him. There were long term benefits from this beautiful encounter as well. Dr. Gonzales was the only attending physician that truly believed Mattie had pain and never denied him pain medication. She had the instinct he wasn't fabricating pain. She was 100% correct!


Quote of the day: God created birthdays, because the world couldn't exist without you. ~ Unknown

Last night I loaded up the car with all the toiletry items that we have been collecting for the April Item Drive over the last couple of months. I was getting tired of living with these items, so I arranged to meet Katie (child life specialist) at MedStar Georgetown University University Hospital.

When I arrived at the Hospital, I pulled over by the curb in order to drop off materials. I was parked in a red (tow away) zone. As is typical, whenever I do this, I get a talking to by security. So today, as soon as I pulled over, no surprise to me..... security came over to me. However, the security officer on duty was Jey. When Jey saw me we both started laughing because I knew he wasn't going to move me away. 

Jey was Mattie's radiology transport assistant at the Hospital (meaning that Jey wheeled Mattie from his room to all his scans), but they became close to one another and Jey always referred to Mattie as his "little brother." Jey was outstanding with Mattie, and he understood right from the beginning that Mattie was scared and in pain and that scanning was challenging for Mattie. Jey became a fierce supporter of Mattie and of Peter and me. Whenever we were in the hospital, which was often, Jey would come to the pediatric unit to visit us. For Jey, his work is NOT just a job. But a part of him. After Mattie died, Jey left the radiology department. He was absolutely heart broken about Mattie, and did not want to work with anymore children. Jey now works hospital security and whenever I am on campus, we always have a chance encounter. Jey never hesitates to talk about Mattie and always acknowledges us for all we do for Georgetown. Jey is always a highlight of my hospital visits! He helps me keep Mattie alive.

This was what my trunk looked like, completely filled with toiletry items! 

My back seat was brimming with kcup coffee! Needless to say, I am happy to have all of these items out of our home and now in a place where they will be useful. All of these items stock the FREE snack/item cart we offer to in-patient families of children with life threatening and chronic illnesses.  

Thursday, March 31, 2016

Thursday, March 31, 2016

Tonight's picture was taken on April 4, 2009. Mattie was in the hospital hallway holding all the balloons he received from his big birthday party in the child life playroom. Mattie absolutely LOVED balloons. It started at a very young age. We would take Mattie into Harris Teeter (a grocery store) and the first thing Mattie wanted was NOT the free cookies they gave kids, but the balloons they gave children. In fact anywhere that gave out balloons to children, Mattie was there waiting in line. Believe me I knew ALL the places that celebrated children in this way. I can still recall taking this photo and I love the big smile on Mattie's face. It was the beauty of Mattie, he found moments of joy in between great pain and sadness. 


Quote of the day: There is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. ~ Winnie the Pooh

In September of 2014, I met Jenny Mulks Wieneke, the Founder and CEO of a non-profit called Along Comes Hope. We met at an awareness event on the National Mall in Washington, DC. After meeting Jenny, the next day she donated about 50 HOPE teddy bears to MedStar Georgetown University Hospital. Keep in mind that Jenny lives in California, not the East Coast. 

In honor of Mattie's 14th birthday, Jenny sent Peter and me a HOPE teddy bear and her Colors of Hope coloring book. A very thoughtful gift and remembrance. I really wish I had such a bear when Mattie was alive, because this bear has a recording device inside of it for children to leave messages! It makes a beautiful keepsake. I wanted to thank Jenny for her gift, so I took of photo with HOPE (the bear) in front of Mattie's Mr. Sun painting. Mattie's painting is what inspired our Foundation's logo and to me it symbolizes the hope that Mattie left behind. 

This afternoon, I had lunch with my friend, Margy. I consider Margy my first friend that I met on Facebook. Many of myFacebook friends I know personally, but Margy was the first one I friended who I had never met. I knew of her through mutual friends, as Margy was their child's play therapist when this little girl was battling cancer. Margy has helped hundreds of children and their families over the years and we both align on the importance of psychosocial care and the impact of cancer on the entire family system. 

Today Margy showed me this beautiful metal heart ornament that she bought for Mattie's memorial tree. She plans on visiting the tree and placing the ornament on it for Mattie's 14th birthday. Margy is no stranger to Mattie's tree, as she visited it with me in the Fall of 2015 and also has placed other ornaments on the tree. 

This coming Monday, will mark Mattie's 14th birthday. It is hard to believe that we celebrated 7 birthdays with Mattie and now 7 birthdays without him. As my friend in cancer, Ilona, says to me Monday marks our 7+7! 

Wednesday, March 30, 2016

Wednesday, March 30, 2016


Tonight's picture was taken on April 4, 2009. After Mattie had a party in the child life playroom, two of his friends came back to his hospital room with him and the fun continued. By that point Mattie was physically tired but still had spunk enough to play along. As you can see his room was filled with balloons, but what you may not be able to tell was that Mattie wanted his bed raised high off the floor. Which was why everyone was close to the balloons, which had floated to the ceiling. 





Quote of the day: If you suppress grief too much, it can well redouble. ~ Moliere

Today involved more running around. One of my stops was to Fairlington Dental, a dentist office in Arlington, VA. I was introduced to this office by one of my friends. She and her family go there for their dental needs. 

For two years in a row Fairlington Dental has contributed a lot of candy (from their candy buy back program that occurs post Halloween -- patients bring in Halloween candy and for every pound they get a dollar from the dentist) to our Post Halloween Candy Drive. This year in addition to candy, they also contributed over 100 toothbrush kits and lip balm to our April Item Drive. This is a major gift that will be delivered to MedStar Georgetown University Hospital on Friday. All the items from our Drive go toward stocking the Free Snack/Item Cart that Mattie Miracle provides to in-patient families caring for children. 

But this is NOT where the support ends with Fairlington Dental. They also became a Platinum Level sponsor of the Walk & Family Festival this year. So in my opinion they are outstanding Mattie Miracle workers!!!

Tuesday, March 29, 2016

Tuesday, March 29, 2016 -- Mattie died 341 weeks ago today. 

Tonight's photo was taken on April 4, 2009, during Mattie's birthday party at the Hospital. Mattie was surrounded by friends that day and truly had a great time. There were cupcakes, all sorts of games, opening of presents and even the excitement of building this 3-D dinosaur model! 


Quote of the day: In the face of events that threaten to overwhelm our lives, storytelling gives us a way of reclaiming ourselves and reaffirming our connections with other people--those who listen to our stories and, by doing so, bear witness with us. ~ Victoria Alexander

Spring has clearly sprung in DC! As I was walking and doing chores today, I did stop to capture some glorious sights such as these cherry trees!

Is this NOT incredible? These are Flowering Pear trees! It almost looks unbelievable and it is even more impressive in person. These trees line the streets of my friend's neighborhood. As I was picking up items for the April Drive at her home, I had the great fortune to pass under these trees! I literally took this photo from the car!

Now back at Mattie's memorial garden in the common's area of our home.... all sorts of things are blooming. Such as this hyacinth! I once got a hyacinth as a gift and when it died off, we planted the bulbs in Mattie's garden. I am so thrilled to see it pop up. Honestly after Mattie died, Peter and I can't keep the seasons straight. Each one seems just like the one before it! Looking at what is happening in Mattie's garden, keeps us grounded to the seasons. Clearly it is SPRING and these flowers always seem to unfurl around Mattie's birthday. We take that as a Mattie sign. 

The daffodils in Mattie's garden. I call it Mattie's garden, because Peter and Mattie planted most of the bushes in this garden when Mattie was a little fellow. Each year we would watch things grow. Now the bushes are almost as big as trees. After Mattie died, we started planting bulbs in the garden, and to me this is Mattie's memorial garden!

Mattie's garden is filled with crocus, daffodils, the hyacinth and also tulips. They haven't come up yet!

Monday, March 28, 2016

Monday, March 28, 2016

Tonight's picture was taken on April 4, 2009. Mattie celebrated his last birthday with us at the hospital. Despite being in the hospital, Mattie had a fun filled day and a party in which several of his friends attended. I remember that day so well, because Mattie was very excited to decorate the child life playroom for his party. There were signs, balloons, and party hats and streamers. 


Quote of the day: The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to. ~  Elisabeth Kübler-Ross


I continue to be perplexed by medical doctors and their unwillingness to understand how psychosocial issues and concerns come into play when discussing one's physical health. Yesterday, my friend in cancer, who also lost her only child to the disease, text messaged me that she was headed to the emergency room with her husband. Her husband was in terrible pain, and fortunately she got him there just in time because he was having a massive heart attack. It is overwhelming, stressful, and scary when a loved one is sick, but then compound to this the experiences bereaved parents carry with them in every interaction. This impacts how we interact with medical staff and hospitals moving forward. In any case, in typical medical fashion, terms were thrown out left and right (as if we non-medical types understand this lexicon) and of course the infamous... do not resuscitate (DNR) papers were presented. Well if you are not frightened to begin with being in pain and uncertain as to your prognosis, then a DNR will really shake some reality into the picture.

What I am suggesting is that terminology and a DNR can still be presented but in a more effective manner, that enables the patient and family to know they are part of the process. NOT just an obstacle in the process that prevents treatment from occurring right away until papers are signed. What truly upset me in this story (putting aside the complete lack of affect and disregard for this family psychosocially), is that my friend explained to the ER doctor that she and her husband lost their only child to cancer and they feel the stress associated with such a profound loss plays a role in this. Don't you know the doctor dismissed this notion and did not want to hear more. 

As soon as my friend told me this, I naturally went to my two favorite psychosocial articles and sent them to her. Both of these articles mention that.... Chronic grief has been associated with many psychological (e.g., depression and anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, fatigue), including increased mortality risk (Alam et al., 2012; Li et al, 2003). She plans on sharing these articles with the doctors! Isn't it amazing that while having to help your husband through a heart attack, you also have to educate the medical community?! Which is why in my perspective the whole curriculum for medical education needs to be re-evaluated because they are clearly missing the other part of the equation that impacts health care..... the psychological, social, and emotional aspects of being human. 

As I say often, bereaved parents are walking case studies. So many of us deal with chronic and long term health issues. Issues that were not apparent in our lives prior to our child dying. So in essence the cancer battle maybe over, but the psychosocial effects CONTINUE indefinitely. Here are some excerpts from the two articles in question that directly pertain to what I was sharing with my friend....................................... 

Alam et al., 2012 in the journal, Death Studies

The death of a child can be a devastating experience for parents. This event symbolizes the reversal of the natural order of life and erases the dreams and hopes that parents have for their child. Parental bereavement has been found to elicit more intense grief reactions than that of one’s spouse or parent (Sanders, 1979). Parents may continue to grieve long after the death of their child

(Kreichbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004; Wing, Clance, Burge-Callaway, & Armistead, 2001). Such chronic grief has been associated with many clinical psychological (i.e., depression, anxiety) and somatic symptoms (i.e., loss of appetite, sleep disturbances, fatigue), including increased mortality risk (Li, Precht, Mortensen, & Olsen, 2003; Wing et al., 2001; Znoj & Keller, 2002).

Li et al., 2003 in the journal, Lancet

Stressful life events can affect the sympathetic nervous system, the hypothalamic-pituitary-adrenal axis, the neuroendocrine systems, and the immune systems, which could result in various diseases. Psychological stress could also raise the risk of unnatural death. It might, furthermore, lead to more adverse lifestyle behaviors, which could in turn affect mortality.

Our data indicate that the death of a child is associated with an overall increased mortality in mothers, and a slightly increased early mortality from unnatural causes in fathers. Psychological stress after the death of a child could affect health outcomes in several ways. The most intense reactions are often seen shortly after the bereavement, with a short term peak of mortality from unnatural causes. In the long term, various pathophysiological changes related to stress could increase susceptibility to infectious diseases, affect the risk and prognosis of cancer, and lead to diseases of the cardiovascular systems. Stress also affects lifestyle—eg, by increasing smoking and alcohol intake, altering dietary patterns, and reducing physical activity—which could increase the risk of mortality from both natural and unnatural causes. Individual differences in the ability to cope with stress are substantial, and mothers generally have more health problems than fathers after the death of a child, as indicated by our findings and those of other studies. Our results showed that, overall, the death of a child aged younger than 18 years increased maternal mortality from all causes, but especially unnatural ones.

Sunday, March 27, 2016

Sunday, March 27, 2016

Tonight's picture was taken on Easter of 2006. We took Mattie to his favorite restaurant for an early Easter dinner. What we weren't expecting was a visit from the Easter Bunny! I can assure you as this bunny approached us, both Mattie and I looked dazed. At first Mattie was scared, but then I explained that this huge bunny wasn't going to hurt him, but only wanted to wish him a happy Easter. Mattie heard me and allowed the bunny to sit next to him for a photo. It was a snapshot in time that Peter and I will not forget. 


Quote of the day: Do not abandon yourselves to despair. We are the Easter people and hallelujah is our song. ~  Pope John Paul II

We are back to grayness and cooler weather. Yet in Mattie's Memorial Garden, the daffodils are all abloom today!

It is hard to believe that we celebrated 7 Easters with Mattie. Yet today marks our 7th Easter WITHOUT him. That realization is painful, as is knowing that soon we will have celebrated more holidays without Mattie, than we had with him.

This was a photo taken on Easter in 2004. We took Mattie for a walk on Roosevelt Island, and in true Mattie style he found something along our walk to take home with him. In this case it was dandelions. 

Around Easter time in 2005, we took Mattie to Butler's Orchard. A farm in Maryland. Each spring, Butler's Orchard hosts Bunny land. Where kids can hunt for Easter eggs, go through mazes, jump in hay, and go on a wagon ride. 

I am so happy that Peter took a photo of Mattie and me in front of this large bunny made out of hay. 

Around Easter time in 2006, I took Mattie to the Reston Zoo. Mattie loved that zoo because it was small and very hands on for small children. They had a barn to pet the animals and even feed them. Mattie also loved riding the horses and going on a wagon ride around the property to check out the other animals.

This was Easter 2007. We took Mattie to the National Arboretum to see the azaleas. This was a treat for all of us and my joke with Mattie was the azaleas bloomed as his birthday gift! They seemed to be timed perfectly with April 4th!

This was Easter 2009, our last holiday with Mattie. We spent Easter in the hospital that year, but fortunately two of Mattie's buddies, Louise and Meredith, visited him and hosted an Easter egg hunt for him in the unit's hallway. Mattie had a great time and as you can see at the end of the day he had a basket filled with goodies.