Tonight's picture was taken on April 4, 2003. Mattie's first birthday! Mattie had an Elmo (the Sesame Street character) party because he was in love with this fuzzy red creature. It was a day to remember. When Mattie turned one, he was unable to walk yet, did not say any words, and certainly wasn't sleeping throughout the night. At the time I thought all these things were challenging, I had no idea what was in store for us. How I long for those correctable type of issues! As we are days away from Mattie's 8th birthday, my goal is to share birthday photos with you for the next several days!
Poem of the day: Those Who Know by Georgia Cockerham
The circle forms as each walks in.
First Tuesday of the month is here again.
We’re sorry for the reason each one is here,
But grateful we offer an understanding ear.
We say our name and that of our child.
Talk of circumstances beyond our control.
At first – so hard – to think – and then – talk.
Don’t want to be here, want to turn back the clock.
In deep grief and raw pain all come seeking “Why?”
We all start off asking why our child had to die?
The answer, we learn, is not to be found.
So simple a question and yet so profound.
Inconceivable loss. Why did we not know
That our child could be taken before we would go?
Now we sit here together. We are “Those Who Know.”
Understanding your cry - “How can it be so?”
Here you’ll find others among “Those Who Know.”
Navigating life broken - we’re no longer whole.
As the amputee learns to get by without limb,
In this room we will help you start living again.
And you’ll learn that we’re different from others out there.
And far less in this world about which we now care.
Diminished capacity—much memory gone,
But we’re here to help you learn how to go on.
As years go by, Tuesday’s come and go.
From the loss of our child so many more we now know.
Steve, Janet, Michael, Brent, Mark and Ron.
Different ages, different causes, but all are now gone.
Zach, Jeremiah, Sarah, Ocean and Jess.
You all guide us in helping those new to this test.
In your memory each of us gives what we can.
Believing that, someday, we’ll hold you again.
First Tuesday comes round. Circle forms again.
Newly bereaved parents in a fog, walk in.
We are living proof that you will survive.
We are “Those Who Know”—our children have died.
"Those who know" is a poem about parents who attend a support group because they too have lost a child. In fact, this poem reflects on the thoughts of parents who also lost their child on a Tuesday. Not unlike us, these parents are asking why their child had to die!? Naturally there is NO answer to this profound question, or at least one that is acceptable. The loss is inconceivable, yet, unfortunately it is our reality. The benefits of talking to other survivors of such a tragedy is that it can serve as a model of hope. Hope that there is a place in this world for us even though in all intensive purposes we feel as if our future has been crushed and eliminated. There are various kinds of support, and though we do not attend a support group, our immediate friends have taken on this role. It is ironic that through great pain of losing my only child, I also see the most tender and beautiful sides of people. A side that I have to admit I never personally experienced before. Not sure why. Maybe I was just TOO busy doing what I perceived to be important, rather than having the time to sit back and absorb this love. That may be part of it, but the other part of it I think has to do with the profound loss in question. Mattie's death at times leaves those closest to us speechless yet at the same time you can feel the empathy, the deep pain, and fear others have as they absorb the reality of life's unpredictable nature.
I had the opportunity to go out with Ann, Mary (Ann's mom), and our friend Tanja. We all went shoe shopping with Mary. We were a sight to observe in the stores. Mary had multiple helpers, with Ann and Tanja picking out shoes, and I sitting with Mary putting them on her feet. I know on some level Mary appreciates this attention and certainly the opportunity for social engagement. Mary likes the sandals I was wearing today, and she landed up getting a pair of sandals that were somewhat similar. It was a beautiful weather day, and I am so happy Mary was able to get out, pick out several pairs of new shoes, and have lunch with all of us. It saddens me though to see Mary's disease progression. I have known Mary for a little more than a year, and in this period of time I have noticed so many changes. I can only imagine how frustrating these changes are for Mary, in addition to her own physical losses she is also contending with the loss of her husband and son.
When Abigail (Ann's youngest daughter) got home from school today, she told me she was ready to climb. Which means she wants to climb the tree, but she also wants to talk or continue our made up story about a dog named "Big Red." Remember Big Red is taking a Caribbean cruise. Not your ordinary dog by any means! Abigail is just being herself, but at times I wonder if she realizes just how special it is for me to spend time with her. She sometimes stops climbing and asks me what Mattie would think of all this climbing or the story, or whatever we happen to be talking about. Abigail has no problem bringing Mattie up in conversation, and talks about him as if he will always be an integral part of her memory. While I was with Abigail, Ann came out to sit next to me on the bench beneath the tree. Abigail came up to her mom several times and they put their foreheads together. Something Mattie and I always did. It is in moments like this it seems almost impossible that I won't have these experiences with Mattie again.
This afternoon, Peter and I had a conference call with Emily. Emily is a former student of mine as well as one of Mattie's first babysitters. Mattie nicknamed Emily, Emmy. Emily has just taken a new job with a company that offers a full suite of web-based software and database solutions for nonprofit organizations. Emily is a dynamic, vivacious, and bright individual who always related beautifully with Mattie and with Peter and I. However, today I had the beauty of witnessing how my student developed into a confident, capable, and engaging professional. I have the good fortune of developing long term relationships with some of my students, and watching Emily's development has been a gift. Emily has a strong on-line presence, and being of the younger generation, we wanted to seek her professional input. She shared her perspective on how the Foundation can enhance its electronic presence. I heard Emily saying many things, but when Peter reflected on the call with me tonight, I began to understand the fullness of what Emily was saying. Emily let us know that when she deals with some start up non-profits, many of them are scrambling to develop content. Emily said we are in a unique position, because we have tremendous content already. Particularly the blog. She let us know that in fact we have quite a good presence on the Internet, and shared with us our strong Google ranking. Both Emily and Peter credit my blog writing to our electronic presence. I wasn't sure I understood this at first, but Emily explained that our blog has so many keywords that when plugged into Google to do a search, our blog pops up. I tested this tonight, and I saw what she meant. In essence, as Peter said to me, it is Mattie's story and how I have captured it that explains our electronic results and by calling attention to Osteosarcoma, its treatment, and the impact of of losing a child to cancer, I am forever memorializing Mattie. I maybe able to capture the story and my feelings, but what makes this a true success is our readers. You continue to keep reading, checking in, and supporting us. Thank you!
Hearing this feedback today was important to me. Each night I sit down and pour my thoughts and feelings into Mattie's blog, but over time, I always wonder if others are losing interest. Emily's comments today verified that my message is indeed getting out and more importantly perhaps this message is helping others. I have to believe this, because I can't accept that Mattie's suffering was for naught!
When I got home this evening, I started going through Mattie's unused toys and books and putting piles together to bring to Linda (Mattie's childlife specialist at Georgetown University Hospital). I think I was under some delusion that this was going to be easy, or easier than going through Mattie's actual toys he played with. Well I surprised myself. This was a challenging task. Challenging because as I started to see hundreds of toys around me I quickly realized the unfairness of this situation. Mattie died, but he should be alive and be able to play with all of his things. Of course in order to get to the unused toys, I had to move passed all his well used toys and things. In fact, in the fall, I took the sheets off of Mattie's bed, and I never washed them. Instead I stored them in his closet, in hopes that I could turn to them when I wanted to remember how Mattie smelled. To my dismay, the sheets had no fragrance at all on them, and that made me very upset. It is yet another example where Mattie has been removed from our lives. After making piles of things for several hours, I gave up. I couldn't do any more. I hit an emotional low. Though I dug through many things, I am still surrounded by a great deal. I frankly have no idea how I will go through the actual items that Mattie played with and loved. All I can say is I am still not ready to do that. Today's exercise proved that.
I would like to end tonight's posting with three messages. I am VERY touched by those of you who are writing me and telling me you are planting "forget me not" seeds or plants in your gardens. What a beautiful gesture to remember Mattie's birthday. The first message is from my friend, Charlie. Charlie wrote, "Although you are not in a formal support group, you have your own group of supporters who share your grief and support you as best they can. The description of last night's meeting around the table made me think of this poem so I found it and sent it on to you. I had heard about Sean Swarner and I am really delighted to hear that he will be at the march. I just wish that Mattie were here to meet him but I believe he will be watching it all. Thank you for sharing the story of Abigail in the tree and your interactions with her. You are still a mom; your love, caring and skill have not deserted you. The question is what will you do with those skills going forward? Sean found his "mission" climbing mountains; I think you too have a mission but you just haven't found it yet. As I practice today I will send you the energy to continue to heal and to build your strength for the search and the march. I hold you gently in my thoughts."
The second message is from our friend and fellow RCC parent, Mary. Mary wrote, "I wanted to let you know that we will also be planting forget me not seeds in our garden on Sunday – in memory of Mattie. I’ve been waiting for just the right time to plant the seeds. I know the girls will be so excited to plant these seeds in our garden with us. Maybe we will make it a family tradition to plant forget me not seeds in honor of Mattie on his birthday each year. Remember the few bags of forget me not seeds that came in from your order where the bags/cards were mistakenly made with hearts on the outside instead of butterflies? Well, I waited a while to try and figure out an appropriate use for these seeds. I gave them to Margaret to have the RCC children plant in the RCC butterfly garden. I think they will be doing this when they get back from spring break next week. Margaret also took a few of them to her daughter’s home outside Seattle to plant – I thought that was really touching. My Sister has a beautiful garden in Erie, Pennsylvania. She and her husband live on 13 acres of land. I will also be giving her a few of the seeds to plant as well. She will love this, not just because of her passion for the outdoors, but because she has also followed your blog (she’s currently in nursing school). Please know that we will be thinking about you and Peter (and Mattie, of course) on Sunday."
The third message is from one of Mattie's favorite childlife interns, Whitney. Whitney wrote, "I planted Mattie's Forget-me-not seeds in a flower pot that I painted Mattie's name on today! I cannot wait for the flowers to bloom! I put the pot right by my front door so that I can think about Super Mattie each and every day!!"
1 comment:
vicki and pete-- i really enjoyed speaking with you and look forward to working together as the foundation website progresses. thank you for ALL you do to keep mattie's memory in our hearts.
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