Wednesday, October 21, 2009Tonight's picture features the sign that Jenny and Jessie (Mattie's art therapists) created to welcome visitors to the fifth floor of the Georgetown University Hospital. This floor houses the pediatrics unit, and Jenny and Jessie wanted to create a welcoming sign that could be displayed near Linda's fish tank (a tank Mattie absolutely LOVED!), for people to see as soon as they stepped off the elevator. Why am I posting this creation, because you will notice a red footprint in the upper right hand corner of the sign. This cute footprint belongs to none other than Mattie Brown! I still remember Mattie making his mark on this sign. We were in The Lombardi Clinic, and Jenny and Jessie asked Mattie to put his hand print on the sign. Mattie refused, and seemed disinterested in the entire project, until I suggested he use "George" (his left foot) to make his mark. That was different and appealed to Mattie. I was so happy Mattie participated in this project, because I wanted something of Mattie to always be present on the fifth floor of the Hospital. I would call it a mom's sixth sense, but a part of me felt that something like this was important to do in order to capture Mattie's spirit.
Poem of the day: “ALL OF THE ABOVE” by: Deborah Sue Pollak (Mattie's art teacher!)
Some children naturally know how to draw ……
Some children love to paint ……
Some children can build things……
Some children know how to dance …..
Some children are pensive and thoughtful…..
Some children speak with precious voices….
Some children possess a natural color sense….
Some children giggle a lot………
Some children like to make people laugh…
Some children are good at planning…..
Some children are terrific at keeping their space neat….
Some children have a vision of what they want to paint..
Some children give cuddly hugs…….
Some children understand concepts with ease…
Some children work with great intensity…
Some children love icing cakes….
Some children are very funny….
Some children enjoy making surprises for their parents........
Some children are determined to learn new things…
Some children embrace challenges….
Some children appreciate people who help them…..
Some children are just plain wonderful to be with…
Some children take hold of your heart from the inside…
Some children are unforgettable.
To me, Mattie was…. All of the above.
I spent the entire day at home trying to regain my strength. It takes a lot to shut me down, but based on how I have been feeling physically and emotionally, I figured I wasn't going to do anything that was further going to jeopardize my health. So I spent the day resting, which is a foreign concept in my world. I find that when I am home I confine myself to our bedroom, and I really do not like spending time downstairs anymore. Mainly because downstairs is filled with Mattie! It is filled with memories, toys, his art, and you name it, and it is there. Everything is there except for Mattie of course.
I received an e-mail from Peter's mom today. It was an e-mail that addressed a question I have always asked myself.... and that is, what would Mattie's life been like had he survived? Sure we could theorize that he would have gone on to accomplish great things, if that is at all possible for a patient with multifocal osteosarcoma. Because from my vantage point, this diagnosis is a death sentence. However, I guess why Barbara's question intrigued me is because I always played this scenario out in my head. Mattie for all intensive purposes was quite disabled. Perhaps he could have learned to rewalk, but it would have taken great effort not only physically but psychologically. I can attest to the psychological devastation present in Mattie's life, and I always wondered how on earth we would work through all of this trauma and get him functioning back into society. This was one of my greatest fears, my second was that others would label him as being different. Sure different can be positive, but when you are 7 years old, you don't want to be different, you don't want to be confined to a wheelchair, you don't want to feel pain, anxiety, depression, you most of all you don't want to have cancer. I struggled with this dilemma about how to help Mattie re-engage back into the world, now of course, I can only dream about having such a dilemma.
My main accomplishment today was that I booked several doctors' appointments for myself. Many of you, I know, are mostly likely happy to hear this. However, based on how I was feeling, this is where my productivity ended. Peter and I want to thank Tamra for cooking us a lovely homemade dinner. I appreciate the recipe too! I am very grateful to Tamra for thinking of us today, and for really providing us with breakfasts for two weeks straight (not to mention meals and gifts throughout the year) while Mattie was dying in the hospital. You don't forget these acts of kindness. Peter and I sat outside on our deck tonight and had dinner. It was a bit chilly for me (well anything under 80 degrees is chilly for me), but I truly appreciated the fresh air. While we were eating, several slugs came out to visit with us. They apparently like to hang out on my plants. I am not a slug fan, but Mattie sure was. In a way, I felt Mattie's presence with us at dinner tonight, because if he were with us, he would have been having a major discussion about the slugs and most likely would have found a way to bring them closer to me. Needless to say, because of Mattie, the slugs have a safe haven in our garden, and seeing them reminds me of his laughter, his spirit of adventure and exploration, and his appreciation of nature.
I would like to share a Mattie tribute that was given at the Celebration of Life ceremony by Margaret. Margaret is our friend, but also Mattie first preschool teacher at Resurrection Children's Center. Margaret was instrumental in our lives and helped Mattie develop into the confident and happy child that he was.
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Margaret's Tribute to Mattie
Mattie became part of my world at the tender age of 3 ½. He was one of 12 little angels
who entered my RCC classroom, the Pretend Room, in the fall of 2005. From day one he
had a unique presence and we were blessed with a special connection…. a connection that grew into a life-long relationship that is, and will remain, part and parcel of my being.
At 3 ½ Mattie was on the brink of “becoming;” becoming himself; an independent, self-sufficient, social individual, separate and distinct from his mom and dad. I had the good fortune of being part of this journey; sharing in the ups and the downs, the highs and the lows, the challenges, and most importantly, Mattie’s successes.
As you all know, particularly those of you who are parents, this time in a child’s life is a composition of moments and experiences that are at once exhilarating, emotional, exhausting, yet ultimately empowering! The day-to-day challenges can be really scary. Mattie, like most children his age, was tentative at times, but because of his natural curiosity and enthusiasm embraced these challenges and began his work of “becoming,” becoming the young boy that we who are gathered here have come to know and love throughout these past many months.
Upon reflection of my first year knowing Mattie I recalled that he typically came in each morning and after a quick survey of our classroom and new materials…his new world…. would often exclaim, “So, what’s this all about?” or “What’s going on here?” I’ll be honest; there were times when these two simple phrases drove me to distraction! But Mattie was curious about everything and was simply anxious to explore, experience, and create. Mattie’s first, and obviously lasting love was exploring his artistic side. He always gravitated to the art materials, particularly paint, glue, shaving cream, and masking tape. Anyone who spent much time in our room that year can attest to the fact the Mattie had a significant role in single handedly using a record amount of colored masking tape for anything and everything imaginable. Mattie’s artistic creations filled the Brown’s home; some of them even made it to my refrigerator art gallery! Mattie also loved to engage in pretend play with his new buddies. He loved to don the Batman cape and flit about exhibiting his “Super Hero” skills. He particularly enjoyed the role of a pesky monkey in the treetop loft when we acted out the beloved story, “Caps for Sale.”
Some of my favorite memories of Mattie are of him on our playground. Mattie loved and spent many happy hours playing in the sandbox with his trucks and his friends; it was here that Mattie learned how to be a friend among friends. The playground also provided physical challenges for Mattie; he rose to each and every one. For example, when Mattie arrived at RCC using the playground slides was not something Mattie was interested in attempting. However, with time and gentle guidance this too was a challenge that Mattie embraced. Before long, he was often the first one climbing the ladder or running across the clatter bridge to get to the top of the twirley slide first!
Vicki and Peter I want you to know that Mattie’s memory will live in all of us in very different ways. For me it will be in the small things, the mundane, sacred moments of everyday life. I’ll see his joyous face and little arms waving from the backseat of your blue station wagon as I wait for the light to change at Fern St. and Quaker Lane; it will be Mattie’s words, “It smells like you in here” as I dab my cologne on each morning; it will be the glow from the butterfly nightlight that shines in our home; it will be the smiles in Mattie’s school photos that hang on our refrigerator. More importantly Vicki, it will be through your infectious smile, Mattie’s smile, that Mattie will live.
Mattie’s spirit will walk with me as I collect seashells in summer, make gingerbread houses at Christmastime, and gaze at a crescent moon. Some of you may recall that Mattie’s sign while in the Pretend Room, a sign that he embraced and loved, was the crescent moon. Now it seems an almost prophetic choice. While we don’t make these connections in pre-school, the moon, and the crescent moon in particular, is a symbol of new beginnings; it is connected to rebirth and how our true essence really is immortal. This is Mattie; Mattie will forever live in my heart as “Mattie Moon.” Today, it’s easy to imagine my Mattie Moon, in yet another new world, sporting an impish grin and a complete set of angel wings earnestly inquiring of his fellow angels, “So, what’s this all about, what’s going on here?”
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I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It is amazing how long we have to wait on the phone for a real person to do some two minute task such as make an appointment. That's the reason almost every medical number that you call starts the message with, "if this is a medical emergency, hang up and dial 911" because as you said, you can die waiting for someone to respond on any regular medical line. Hopefully, you did eventually get what you needed. Thank you for posting Ashley's tribute to Mattie; what she said about connections really resonated with me and with many others as well. I am trying to live up to Mattie's spirit, to reach out even when I don't feel like doing it, to try to find connections even when it is difficult and to look deep inside for compassion when my instinct is for myself. I will keep and treasure that gift in my heart and my life as I am sure many others will as well. I would like to share a story with you. My dad died very suddenly, he was not ill but had an undiagnosed brain aneurysm that "blew" and he was gone. When my mother wanted to connect with him she directed her comments to a little stuffed dog that always rode in my father's car; she said it still held some of his spirit. I've heard that sort of story from several people who've lost loved ones and the variety of objects that "hold spirit" is quite amazing. I hope you find some relief from your physical pain and illness today and know that I among many, am holding you gently in my thoughts."
The second message is from my friend and colleague. Nancy wrote, "It has been about 10 days since we've last said hello. I spent the last day + reading the latest entries on the blog. As always, the pictures that you have chosen say 1,000 words. His smile, his creativity, his sensitivity, all, come out in these pictures. I was moved by the view of the scan machine and his looking at the donut, a true contrast of images. One dreaded by many, the other soft, creamy, enjoyed by all who eat. I think that says a lot about Mattie. As I read your entries all these months and pondered how many unfair things were happening to your family, I thought of Rabbi Kushner's book, When Bad Things Happen to Good People. I know that you are not ready for reading or hearing another's story as every story is different. I just mention it. There is no good time for a parent to lose a child! I was so moved by the poem for today. As I've said earlier, I don't think Mattie will ever be gone, his body, yes, never his spirit. Too many people have seen this and felt this. Death is one of the hardest issues to deal with. Most, including me, don't feel that my words are the 'right' ones. How can I comfort you when your heart is so broken? I was glad to read that you have a doctor's appointment on Thursday. You know how worried I have been about you and your health. I know that Peter has gone back to work and that your days are not as structured. Your bed may seem a refuge, yet, Mattie would want you to get up, go out, be your wonderful, generous self, because, that is how you raised your son. Each day you wrote about Mattie's day, there was an element of thinking, feeling, and doing to help another. I know that Mattie's loss is so fresh and as Charlie said, no one person can experience his passing as you will. Peter and you have a strong connection and I am very grateful for that as this, too, will give you strength. Doing basic things like grocery shopping are monumental and you made dinner. Bravo!!!!!!!! Marv and I were sorry that we couldn't be at the Life Celebration, yet, having all these remembrances and sharings does bridge the distance. I hope that we can have a visit one of these days and wanted you to know how much I cherish my Mattie Mr. Sun cards. I seem to hoard them and have only used them for special, special circumstances. That was another wonderful way to honor your son. I have been amazed by your wisdom, at such an early age, remember, you shared your dissertation with me and your story of your grandmother and Mom. I cherish our friendship and hope that you will feel the sun each day as Kim referred to the Resurrection Sun at Mattie's school."
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