Thursday, October 15, 2009

Thursday, October 15, 2009

Tonight's picture features Mattie at the Georgetown University Hospital's ribbon cutting ceremony for the Childlife Playroom. Mattie LOVED this playroom and spent many hours in it playing, interacting with others, and he even celebrated his 7th birthday in it. It is hard to believe that in August 2008, the hospital did not have a playroom for the children. This playroom was such a needed and welcomed addition to the PICU floor! In the picture, you can see that Mattie was very honored to be asked by Linda to cut the ribbon to the playroom door. Mattie was photographed by the hospital and was invited to the opening celebration party! A day I will never forget.

Poem of the day: Grieving Time, A Time for Love by Barbara Bergen

If a loved one has departed,
And left an empty space,
Seek the inner stillness,
Set a slower pace.
Take time to remember,
Allow yourself to cry,
Acknowledge your emotions,
Let sadness pass on by.
Then center in the oneness,
Remember...God is here,
Death is but a change in form,
Your loved one is still near.
Treat yourself with kindness,
Allow yourself to feel,
God will do the mending,
And time will help you heal.

My parents headed back to Los Angeles today. To help with this transition, I met up with Ann and we spent some time together talking and having lunch. I filled her in about Mattie's Foundation and then had an opportunity to talk with her about how I am feeling. Feelings are NOT something I handle very well these days. I am very aware of the fact that when people evaluate me from an external perspective, I appear intact, together, and well adjusted to Mattie's death. I am very cognizant of the fact that we live in a world where we usually judge a book by its cover. However, things are NOT always what they appear, and just like you wouldn't determine if a book is worth reading or not from its jacket cover, the same analogy goes for me. Do not be deceived by my exterior presentation. Because if you scratch the surface of my perceived together exterior, you will find that inside is a person who is confused, disillusioned, perplexed, angry, sad, at times hopeless, but mostly you will see a mom who greatly misses her son and struggles how to find a way each day to live without him.

As I headed out of our home today, I noticed that Mattie's wind chimes on our deck were twinkling. Mind you there was no wind out, but yet these beautiful chimes (which he got me for my birthday) were making music. I couldn't help but stop, and chat with Mattie. I told him I knew he was there with me, and he was providing me with this lovely music to start my day to tell me he is thinking of me and loves me. Naturally these chimes could be producing music for a host of reasons, but for me, the realistic explanations do not matter. To me these chimes are a direct communication link for me to Mattie. Hearing these chimes mean a great deal to me, and I still cling to signs in my environment and world to Mattie and his happiness.

I have to truly believe that after 13 months of watching Mattie suffer through chemotherapy and surgeries, and then a very, and I mean very painful and traumatic death, that these events have left me weak, fatigued, and emotionally closed off to processing my true emotions. Peter and I have experienced one trauma after another this year. Specifically we went from one bad diagnosis to another, and one horrific treatment to another. There is just so much the human spirit can handle before it just shuts down. I held it together for Mattie all these months, but at the same time, watched him slowly die over the course of this year. So part of me had 13 months of grief work to deal with, and yet the other part of me knows that I have shut down now for self protection purposes. It would be nice to be able to grieve immediately I suppose, but this is not my trajectory, and I just have to come to peace with this. My process will be slower, perhaps more complicated, but nonetheless it will happen, but on my own terms. So I guess my message to those of you who interact with me is don't assume that everything is fine because things appear okay and sound okay.

Peter was compelled today to visit Roosevelt Island. Neither one of us have gone back to this special park since Mattie's death. This Island meant a great deal to Mattie. We spent many happy hours there, where Mattie learned to skip a stone, collect leaves, spot wildlife, and race his remote control boat. It was our retreat from the busy world of Washington, DC that we live in, and we just love how this Island is literally only minutes from our home. Peter walked the Island today in the rain. No one was on the Island except for him. Peter visited a special tree that Mattie loved on the Island. This tree produces beautiful round fruit (grapefruit sized), that has a citrus fragrance. As Peter approached the tree, there was ONLY one fruit to be found lying on the ground. None were hanging on the tree either. Peter grabbed a hold of this large fruit, and when I arrived home, I saw it sitting on our kitchen table. It is amazing how certain sights can take you back in time. I can almost hear Mattie laughing and questioning the origin of this fruit. I told Peter I was so happy he took the fruit home with him, because he would have made Mattie proud. This is exactly what Mattie would have done, and in a way I felt as if this simple gesture of taking the fruit today celebrates Mattie's life, spirit, and memory!

I would like to share Ann's tribute to Mattie tonight. Ann delivered this during Mattie's Celebration of Life reception. Ann was our Mattie Team Coordinator, but over the course of 13 months, Ann and Mattie had many playdates together, in which they got to know each other as well as appreciate each other quite well. In true Mattie fashion though, he found a way into Ann's heart, and after a couple of months, I began to see that Ann also loved my son. The unfolding of their special relationship is something that I will always remember and will always cherish. In fact, for me spending time with Ann helps me keep Mattie's memory alive.

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Ann's Tribute to Mattie

I stand here today to talk about the miracle of Mattie Brown – not the miracle of his physical healing – which we all hoped beyond hope to achieve – but the miracle of his presence. In his short 7 years here on earth – he infected each of us with a passion for life – for creativity - for being part of the process. He shared and experienced every detail of every task in such a passionate and intense manner. Mattie never did things the conventional way. He did things the Mattie way!! I learned quickly that by following his lead – the process would be more enjoyable, more of an experience and definitely messier!

When I went to see Mattie at Georgetown or at home in the past year, I always brought my “Mattie Bag”. In this bag I carried all sorts of games, science projects, art projects and the like – whatever I could find that I thought would capture his attention. My goal was always to ENGAGE Mattie in some activity – what I learned very quickly was that I was the one being ENGAGED. Mattie had a way of sifting through my bag and coming up with an idea (when Mattie Brown said, “Ann, I have an idea” I knew it was time to LISTEN UP!). He would maybe start with something from my bag (I think he did this to make me feel good – even on his sickest days – he was very much in tune with the feelings of those around him) – but then he would add his own personal twist. So, over the past year, my rock painting project became a fancy car wash and my volcano kit became an amazing jungle scene and even simple goldfish became some type of mushy soup that I was supposed to eat! He indeed ENGAGED me and captured my heart. He was present in every moment of life – he cared deeply and felt deeply and lived his short life to the fullest. In the world of Mattie Brown, there was no down time! He was always thinking and always creating and always present.

Mattie Brown was wise beyond his years - I believe he even tried to prepare me for his death. It was shortly after the horrible news of the spread of his cancer and I went to his house to offer support, but once again, it was Mattie who supported me. He was camping in his tent – lovingly grounded to the living room furniture by his devoted dad – and he invited me to get comfortable and talk to him. Well – Mattie had never asked me to sit down let alone lie down in the past year – as a rule, he had me running around searching for tools and batteries! So, when he wanted me to lie in the tent and talk to him, I was certainly listening. He asked me if I was comfortable, asked me how my day was and proceeded to tell me all about places I should make sure to visit – such as Roosevelt Island and California. He was weak and fragile on the outside but he was so strong and determined on the inside. Even though he had not been told of the return of his bone bugs, he knew I was sad and that his parents were sad. He was so emotionally clued in to those around him and cared deeply and tried to protect and help others. He was an angel for sure.

Mattie cared deeply…
Details mattered to him.
Fairness mattered to him.
Feelings mattered to him.
Friends mattered to him.
Life mattered to Mattie Brown

I believe that Mattie Brown was a PRECIOUS GIFT – each of us was allowed the opportunity to learn something from his life – now it is up to each of us to go forward and live our life in true Mattie fashion.
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I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Your Mom's (Mattie's Grammie) tribute was one that really touched me. I thought she got to the heart of who Mattie was/is, so well. That "cheerleader" side of Mattie who could help you do what you thought you could not handle; what a wonderful gift that was, and amazing for someone so young to have it and know how to use it is very special. I know that right now you feel like you can't go on, but hear what Mattie told your Mom; "you can do this, I will be with you". Mattie will be with you as you go forward in your life, as you set up the foundation, as you find your way. I know he is watching and cheering you on. For today, take a space of time to just be, to breathe and to know that Mattie loved you with everything he had, and that was a lot!"





The second message is from a fellow RCC mom and friend. Beth wrote, "I want to first join others in commenting on how lovely the service and celebration for Mattie was. The love for Mattie was clearly seen in the people in the room. I'm absolutely in awe of the medical staff that fell in love with Mattie and loved him so much. It's a bit re-affirming to see that level of love, compassion and sadness in such a varied group of medical professionals. You certainly should be proud of the special little boy you raised who could bring over 400 people together to think of him, miss him, and support you. Your blog somewhere along the line became the March for a Mattie Miracle, and although the miracle we were all wishing for was not to be, I'd say that Mattie was a miracle all by himself. My husband was to be out town on Saturday so I had planned on a sitter keeping Charles and his brothers while I attended the service. For this reason, I had not told Charles that Mattie had passed away. I did not want a sitter having to deal with the questions about any of this so figured I'd wait and tell him after. So, on Saturday I told Charles of Mattie passing away. On Saturday, Charles refused to believe me. It was not until Monday that he believed me and began asking the questions one might expect from a 7 year old. So, we've talked on and off about Mattie and how you and Peter have celebrated his life and we are planning our Mattie garden for the seeds. As I will never understand the mind of a 7 year old, I can't understand how Charles is processing, but I'd say he is. Today, he told me and his brother the story (his story) of how he and Mattie became friends and I thought I would share that with you in Charles's words as much as possible."

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Charles to his brother: "I met Mattie in the Pretend Room at preschool. I was in the loft and Mattie came up and asked for scissors while working with purple tape. I went to get the scissors and then I cut the tape Mattie was working on. He got really mad at me so we did not become friends right away. Later I brought more tape to the loft and Mattie then liked me. I still remember it so good. I even remember what Mattie was wearing - a red and white striped shirt. After that day we were friends and even though we would sometimes fight we were friends. We used to get into trouble saying 'potty' words and the teachers would tell us to stop, but it was fun. One day I even went to his birthday party at the zoo and it was raining and we made all the grownups walk around in the rain with us and we just laughed at them."


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Beth wrote, "Now, of course, who can say how accurate his story is, but to him it is a living, breathing memory. Was the tape purple? Who knows? Was Mattie’s shirt red and white? Who knows, but those images were very clear to Charles as he explained all of this to his brother. I plan to take a copy of this email along with the programs from the service and celebration and put them in the things I saved for Charles from Resurrection. So, one day when I pass on that box of memories Charles will go through them and take some time to celebrate that very special day at RCC and that very special boy, Mattie J. Brown."