Tonight's picture features Mattie with his Lego creation, "Chompy." Mattie had Peter run out to the Lego store to buy a bucket full of green legos. When Peter returned, Mattie started assembling this alligator structure without any directions or guidance! You may also notice glow in the dark stars and planets on the wall behind him in his PICU room. Those decorations remain up on the walls in room 9 even today.
My grief is like a river--I have to let it flow,
But I myself, determine,
Where the banks will go.
Some days the current takes me
In waves of guilt and pain,
But there are always quiet pools,
Where I can rest again.
I crash on rocks of anger--My faith seems faith indeed.
But there are other swimmers,
Who know that what I need
Are loving hands to hold me
When the waters are too swift,
And someone kind to listen
When I just seem to drift.
Grief's river is a process
Of relinquishing the past.
By swimming in hope's channel's
I'll reach the shore at last.
I can confidently say that Mattie had a beautiful funeral mass, reception, and celebration of life ceremony today. I know he was looking down upon us and was smiling. He was smiling for many reasons, I am sure he was beaming over the fact that people were appreciating his art work and creativity, and most likely because he could see just how many people united together and formed a solid community. This community helped us through the past 13 months, through this emotionally laddened day, and I have no doubt some of you will be there as a continued force into our uncertain future.
It is after midnight, and I am not thinking as clearly as usual. I am exhausted physically and emotionally, and therefore plan on making this short tonight, in hopes that having another day to reflect on today, will make whatever I say tomorrow more insightful. If that is at all possible. One thing I do want to say is that we are SO grateful to Team Mattie for helping us plan, coordinate, and execute our dreams and desires for today's event. You far exceeded my expectations, and having you all in our lives is a blessing beyond measurable proportion. Thank you Olivia, Tamra, Alison, Ann, Deb P., Luda, Liza, and countless other volunteers who made today beautiful, elegant, and most importantly memorable. Mattie's art work was exquisitely displayed, and when I saw it filling each and every room, I took great pride in his works and appreciated the importance of art in his life this year.
We want to thank all of you for coming or sending us messages today. Your presence made today possible, and several of you assured me you would never forget Mattie. I had many questions about whether I would continue writing the blog as well. As I said before I would write up until Mattie's funeral. I am not sure how I feel about this now, and will continue until I have determined I can't do this any more. A part of me feels by writing each day, I force Mattie's memory to be ever present and therefore to never die. Of course I realized whether I write now or not, his legacy will continue on to some extent. But until I can assure his legacy with an effectively functioning Foundation, I most likely will keep writing.
The day couldn't have been more special. Every part of it was memorable, and seeing the children sing a self created song for Mattie was touching, along with their red balloon release with messages attached for Mattie to read in heaven! What a sight that was, and I will never forget any of this. None the less, even after a mass, talking to several hundred people, hearing tributes to Mattie, and being surrounded by amazing love and support, I still tonight feel so empty, so alone, and so directionless. I actually don't feel much these days, I can't cry, and I move from one task to another. Despite not feeling, I do know on some level I am profoundly changed and I miss everything about Mattie in our life.
I am signing off tonight out of sheer exhaustion, but I would like to end with two messages. The first message is from my friend, Charlie. Charlie wrote, "Now that the day is here for Mattie's funeral, I feel it has been just a moment from the time he was diagnosed until now. And yet, it seems a long time that you wrote your daily blog about how the treatments were going. I wonder if you feel that same odd feeling of time displacement that I do. I do believe that Mattie is here and that he will be attending his service,admiring his artwork and waiting to hear what we all say about it and about him. I think he will be there enjoying it all, from the service to the balloon release and the wonderful show of his art. And I think if there is a way, he will let you know he is here. There is the story of the caterpillars and the butterflies, which I will (badly) paraphrase. The caterpillars were all eating their fill and talking about the future. Some only watched as others of their friends spun themselves into cocoons calling, "have faith, we'll be back." They watched and waited but nothing happened and they mourned their friends' passing. One morning, when they went out to eat the young leaves, they noticed the cocoons were empty and they looked about for their friends, butnever noticed the new butterflies flying above to the flowers to drink. And the caterpillars said, "see, it was just a story about a life after", and the butterflies could only wave their wings in passing as they flew off."
The second message is from one of Ann's neighbors who I met at a picnic in the spring. Karen wrote, "I have started and re-started this email several times in the month since Mattie passed away. I worried that you would think it strange that someone who does not know you or Mattie would write an email to share her sympathy. But as you have already heard from many others, Mattie's life and his battle against cancer have been in my thoughts so much these last few months, so I wanted to let you know a few things. First, though I never met him, I will not forget Mattie. When reading your blog, it always struck me that Mattie was able to keep his sense of humor, his inquisitiveness, and his sense of self through incredible pain and through situations most adults would struggle to endure. It is truly amazing. I have two boys, and when I look at them I sometimes wonder about Mattie and how someone so young was able to have the strength and spirit to fight the way he did. He was clearly an exceptional boy, and I know it is because he has exceptional parents. Which leads to me to my second point - what a profoundly generous thing it is for you and Peter to share your journey through your blog. As I said before to you, I have several friends who haven't met you but who have followed Mattie's battle. All of us have been deeply affected by his fight and his death, and while we are sad, I also know that it has been a lesson. While I believe (hope?) that all parents love their children, your complete love and devotion to Mattie, and how you were able to fight for him so fiercely despite being exhausted and being faced with unimaginable pain, struck everyone I know who reads your blog. Something brought this home to me the other day. I had to take my 2-year-old to the ER for stitches after he hit his head on a table. He was fine, and I knew he would be fine, but it was a pretty hairy 30 minutes when they strapped him down to a board to start doing the stitches on the back of his head. He was hysterical. After they finished and I was comforting him, I thought - how did the Browns do this every day for over a year without being able to tell their child or know that everything would be "fine" in a half-hour? And it led me to this. Mattie was able to do it because he knew that his parents loved him without limit, and his confidence in that gave him the strength and courage to keep battling cancer. I am grateful to you and Peter for sharing Mattie's life and for allowing me to know him."