Tonight's picture was taken in April of 2008, during Mattie's 6th birthday party. This party was held at a bowling alley. This was Mattie's last birthday party before cancer struck. The irony was at this party Mattie started to run a fever and grew very tired. After the party was over, he literally came home and passed out on the couch. VERY unusual for Mattie, because even as a baby he rarely napped! We may have been at a bowling alley, but the theme that year was Scooby Doo!
Quote of the day: It is by suffering that human beings become angels. ~ Victor Hugo
Twelve years ago today Mattie Brown was born into our lives. Mattie taught us many lessons about life, in only seven short years. It was a very bittersweet day for us. The one thing Peter and I have learned about special days like birthdays, anniversaries, and holidays, are that they only magnify the already intense feelings we already feel on a daily basis. Those who are close to me know, I am not a crier. It takes a lot to get me to cry. It is not like I sit there and say to myself..... okay, you can't cry, you have to hold it in and be strong. That isn't the case at all. I just don't usually emote that way. Now that doesn't mean I don't feel! Quite on the contrary, I feel everything internally. But when I do cry, that means, I have reached maximum overload inside, and literally an alarm bell goes off, and out it comes. Crying for me is very tiring. I began the day crying. Peter and I sat for a bit on the beach, under an umbrella and I literally fell asleep. But while I was resting, Peter took over my usual state of agitation. He couldn't shut down. I know that feeling all too well. I live it daily. To manage the agitation, the only thing to do is walk. So literally as nutty as this sounds, we walked four miles in the hot sun (it was in the 80s today!) to the Bonnet House Museum and Gardens. I will share more about our day below, but first I wanted to highlight some of the wonderful and touching messages we received today. I also want to thank several of you who donated to Mattie Miracle yesterday and today in honor of Mattie's 12th birthday. This means a great deal to us!
We received this beautiful message from Mattie's favorite HEM/ONC nurse, Tricia a few days ago. As our faithful readers know, Mattie told Tricia one day in the PICU that he "loved her." High praise, which he did not easily dole out! Tricia wrote, "I know as Mattie's 12th birthday approaches, bittersweet memories consume your thoughts. Once again, I just want to tell you both, from the bottom of my heart, though I can not possibly know the pain you continue to endure with Mattie's loss, my thoughts will be with you. Though I think of him regularly, I will be fondly thinking of all of you, especially our Mattie on the 4th. Life is forever changing, this we all know, but the ways in which I have witnessed the foundation change lives only brings me happiness to see that Mattie's legacy continues to live on. Just wanted you to know that on April 4th I will be reminding myself of how fortunate that myself and the rest of the world are for having known your wonderful son. Mattie clearly personified the best of both of you. He will never be forgotten. XOXOXO"
The second message is from our friend Cathy. We met Cathy and her wonderful family at Georgetown University Hospital. Her beautiful daughter began her cancer journey around the same time as Mattie. My faithful readers may recall me talking about my visits with Bridget on the blog. Bridget is Cathy's daughter. Cathy wrote, "Our hearts are with you every day but most especially today. You two created an amazing person and it was our privilege to be able to get to know Mattie, even for a short time. He continues to be an inspiration to Bridget and the rest of us as we try to match his spirit and courage. It was a shock to learn of Jocelyn's passing, she looked out for Bridget and did what she could to make the clinic more comfortable for her. I pray that she and Mattie are together and find comfort and peace with each other. I wish that I could give you comfort and peace but I can give you my total support if ever you need it, you have given us so much. Thanks to your family and your example we have also learned how to be better advocates for Bridget and to stand up for her when necessary. Many thanks. I wish you the best for today."
Lastly, I want to share the beautiful birthday message from my mom. My mom wrote, "Five years later, Mattie's spirit still burns bright and
impacts the daily lives of those who knew and loved him. On the anniversary of
his twelfth birthday, we honor his memory by remembering his fight to live in
spite of the odds against him. His instincts were sharp and when he saw his own
physical deterioration progressively diminish his abilities to function as a
normal child, he had many troubled moments reconciling himself to his new life.
But, he never gave up or lost his drive to fight back and go on. What inspired
that intense inner drive might be hard to understand in a seven year old child
but the answer lies in his determination to do whatever it would take to remain
connected to his family in the bond of love that made him feel secure and happy
with life. It was a precious relationship that meant so much to him that he was
determined to preserve it against all odds in spite of daily pain, anxiety, stress, isolation and
depression. He was ready to embrace whatever medical advice and treatment you
and Peter proposed because he believed that following your advice would make
him well and keep him close to you. If
it meant exposure to the dreaded MRIs that frightened him so intensely that he
needed drugs before he could submit to them or whether he was made to undergo
another round of invasive chemotherapy that made him so horribly sick, no
threatening procedure was ultimately rejected as long as it had your approval.
If it held the promise of hope that it would kill the "bad bugs" so
that he could live out his childhood dream of growing up with the two of you at
his side, he resigned himself to the ugly effects of the endless cycles of
treatment which in many ways were as horrendous as the disease. Those who
witnessed Mattie’s long struggle of fourteen months can never forget his
bravery. That is why his story is inspirational and has won over the hearts of
all the people who would come to play a role in his personal battle against
cancer. His story was and is still read
through Mattie’s blog that you and Peter have faithfully written every day
since he was first diagnosed with cancer. In time, the drama of your little
boy’s struggle with life and death became the stuff of legends. Mattie has
proven himself to be the focal point of transformational energy in his short
but meaningful life and remains a beacon of hope in our troubled world.
Is it only a coincidence that you and Peter, the founders of
Mattie Miracle were honored the week of Mattie’s twelfth birthday by Georgetown University Hospital with the
"Flame of Hope" Award that was bestowed on you at their annual Gala
for your tireless efforts on behalf of children with cancer? I do not believe
in coincidences! No, you were honored
because in remembering Mattie you chose to use your talents to bring a more
enlightened approach to the treatment of pediatric cancer patients by addressing
largely overlooked psycho-social needs that have been poorly understood. Your
efforts to seek and define standards of care to deal with the mental health
issues that arise when cancer strikes a child are necessary but were lacking as
you discovered when Mattie was stricken with cancer. Through Mattie Miracle, you and
Peter have given Mattie's light a new and worthy place to shine!
To you Mattie, on the anniversary of your 12th birthday, I
am reminded of the words of Carl Sagan who said: “To live in the hearts we leave behind is to
never die.” These words are inscribed
indelibly in my heart and reside there to express my eternal love and devotion
to your memory."
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Peter and I walked to the Bonnet House Museum and Gardens today. The Bonnet House, named after the bonnet lily that grows there, was designed by Frederic Clay Bartlett, an American artist from Chicago, IL. The land was given to Frederic and his wife Helen by her father, Hugh Taylor Birch, as a wedding gift. Construction on the estate began in 1920 and continued for more than 20 years. Tragedy struck in 1925
when Helen died from breast cancer. Frederic’s visits to Bonnet House then
became sporadic until 1931, when he married Evelyn Fortune Lilly. With this
marriage, a renaissance occurred on the site as Frederic and Evelyn entered a
prolific period of embellishing Bonnet House with the decorative elements that
delight visitors to this day. Frederic died in 1953, but Evelyn continued to return each
winter. In 1983, Evelyn Fortune Bartlett gave Bonnet House to the Florida Trust
for Historic Preservation. Her contribution—at the time, the largest charitable
gift in Florida history—ensured that the site would be preserved for the
enjoyment and education of future generations.
The Bonnet House and the little yellow house on the left with the rectangular windows was Evelyn's orchid greenhouse.
The grounds in which the house is situated on are absolutely lovely. Lush and very mature trees line the property and this Banyan is just one of many examples to choose from.
While touring the House gardens we came across this very large Iguana! In honor of Mattie's birthday, I figured this fellow deserved a photo.
Along our four mile walk, we stopped for ice cream. I never looked at the name of the store while buying the ice cream. However while eating and walking, I looked down at the name of the cup, and literally as you can see it says, "Yo Mama's." This made me laugh! I could picture Mattie's reaction to this name!
Tomorrow we head back to DC. Somehow this has been a rough five days for us. We aren't looking forward to returning, and certainly we know we can't stay. I end tonight's blog, with two beach photos. The ocean is glorious and despite how we have been feeling, it is therapeutic to know it is there and to be beside it.
I entitle this photo, "Three on the beach." There maybe only two of us, but in our hearts, there will always be three of us on the beach.
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(A photo inside the greenhouse!) The Bonnet House grounds encompass one of the last examples
in South Florida of a native barrier island habitat. Five distinct ecosystems
can be found on the property including the Atlantic Ocean beach and primary
dune, a fresh water slough, the secondary dune which includes the house site,
mangrove wetlands, and a maritime forest. In compliment to the natural
vegetation, the grounds contain a Desert Garden composed of arid plantings, a
hibiscus garden, and the main courtyard planted with tropical vegetation.
Evelyn Bartlett was a passionate orchid collector and the varieties she left to
Bonnet House comprise one of the largest collections of orchids in the
Southeast United States. Various blooming examples are rotated regularly
through the estate’s Orchid Showroom.
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