Quote of the day (thanks Susan S.!): I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~ Mother Teresa
When Susan sent me this quote today, it really hit home for me. I do think that sometimes people are given much more than they can handle. Today was one of those days that made me reflect upon this. Being home as I said before is a mixed blessing. Today Mattie was in a funk. He did not want to do much, did not want to interact with my parents, and needed constant one on one attention. There are times that I do see that Mattie is indeed depressed. Lord knows he has every right to be, but it just makes the days much more painful, much longer, and makes you feel helpless without an end in sight.
This morning I received a lovely e-mail from Ashley. Ashley is a pastor, RCC mom, and friend. Ashley led the prayer service for Mattie last night. She shared with me her impressions of the evening and she even shared her talking points which I will share with all of you later in the blog. I feel she put so much thought and effort into this, that all of you should have access to this meaningful script. In any case, as I was reading Ashley's talking points, the seriousness of Mattie's situation hit me. Not that I don't know this is a life threatening situation, but I guess in order to survive day to day, you deny the inevitable. It is a great coping mechanism, I guarentee you. But today, I couldn't help but reflect on the possibility of Mattie's death. This notion is hard to deal with, it was hard to shake once I got it in my head, and I wonder really how parents can imagine their world without their child in it?! I don't know, I did not come to any conclusions.
Today Mattie and I played trains together on the floor, we did lots of computer time together, read books, played a Scooby Doo game, and even took a short nap together. But the days are long, and when Mattie doesn't sleep until 1am or so, there is simply no down time. On wednesday Mattie has been invited to meet Santa at Georgetown's hospital, but he goes back and forth about whether he wants to do this. So at the moment, I still don't know if we are going, but I do know that Mattie starts physical therapy again tomorrow and friday, and he will have occupational therapy on thursday.
Mattie had two lovely visitors today, Maria and Luz. Both ladies help manage the complex we live at in Washington, DC. They came over today to deliver a life sized teddy bear (which is now on Mattie's bed), a huge get well card signed by many of the complex's staff, and the staff at the complex also pooled money together to make a generous donation to Mattie's fund. What a lovely and meaningful gesture. We have lived in this complex for 14 years, and it is nice to know that we are indeed a part of a caring and compassionate community. Thank you for brightening up our day!
I also received an e-mail today from my colleague and friend, Camille. Camille let me know that the three local counseling associations I have been involved in, are hosting a social and fundraiser on Mattie's behalf on December 21. Thank you DCMHCA, DCCA, and DCSCA for your support during this difficult time!
Mattie did receive several nice gifts in the mail that I also want to mention. Thank you Grandma and Granddad for the remote control car. It is zippy and we had remote control car races today! Also we look forward to using the wire puzzles. Never did that before. We want to thank Grammie's friends from the stroke support group for making a generous donation to the Mattie fund. That was so thoughtful of all of you. Lastly, Mattie received some lovely books from Janet W. We do not know Janet, but she read an article about Mattie in the in Velador, a newsletter for the Caribbean Conservation Corporation (of which Roxana, Mattie's sea turtle is a part of). Thank you Janet for thinking of Mattie!
Lastly, I want to thank Sylvia for a wonderful dinner tonight. Sylvia was a professor and mentor of mine at GW. She has been very helpful to me in tracking down trauma resources for Mattie and in the midst of our dialogue about this she also wanted to get me food of my choice tonight. Thank you for the great food from the Cheesecake Factory! Mattie appreciated the pizza.
I end tonight's blog with the script that Ashley developed for Mattie's prayer service. I am hoping you enjoy reading it as much as I did!
Prayer Service for Mattie Brown - lead by Ashley Goff Glennon
Ring Bell
Light the 3 candles
Welcome:
Church of the Resurrection, Resurrection Preschool
Ashley Goff, parent at RCC. Sam was here at RCC with Mattie. Associate Pastor at Presbyterian church in Dupont Circle.
Idea for Prayer Service came up a few weeks ago from Kathy Brown, another parent from RCC who had kids here when Mattie was here at RCC. Kathy is a nurse at GW and as she put it, “believes in the power of prayer.” Asked me if I wanted to be involved and here we are.
This prayer service was created just for those on Team Mattie and Ann Henshaw’s email list. That was intentional b/c we thought Mattie’s situation isn’t getting better or easier and we wanted to build-up this community. Connect with each other, put faces to names, and strengthen this “body” of people to continue on with love and care for the Brown Family. They have a long road ahead and we need to shore ourselves up to be part of that long, painful road. This is our purpose for being here.
This is more than just community building and get to know you. This is about prayer. It’s about connecting with each other for the sake of the Brown family through this ancient, spiritual practice that can tie and bind us together.
Each one of us probably has a different definition of prayer, different experiences, different needs for prayer. We are here because prayer calls us to remember that there is a presence in the universe, in each of us, beyond our understanding yet still empowers us to work through and connect deeply with struggles, heartaches, and life threatening situations such as Mattie’s.
Here because prayer can make a difference. Lots of research being done these days that shows prayer and alternative modalities are helpful, and a creative resource in times of illness. Duke University has an entire center on Spirituality and Health and NIH has done a lot of work on alternative medicines along with GW. Prayer is an essential component to the picture of healing and well-being.
Know prayer is a powerful tool in healing b/c it connects with our core—the energy, the Spirit, the emotions, the illness…prayer gets to the root of who we are and when you are sick or care giving, the root of who you are is very much exposed. Vicki’s blog.
Tonight take advantage of this context of RCC which thrives on interactive and sensory experiences as a way of learning. This prayer service will be interactive and sensory. This won’t be me praying, and you all listening. You will be reflecting and doing tonight, getting at the heart of what Mattie’s illness and his grim prognosis mean to us.
Ground Rules…….
1) Confidentiality: what is shared in the room, stays in the room.
2) Safe space: share, write, reflect what you want and capable of doing.
3) What comes up, comes up. If all of a sudden you find yourself thinking about your Aunt Betty who died of breast cancer two years ago….feel guilty for not focusing on Mattie. Ok. Your story that comes up is an extension of Mattie’s story.
4) Non-judgment: what we hear and witness in this room is not only kept in confidence but not judged. It’s about acceptance. Accepting people’s understanding of prayer, what comes up, how people express themselves, etc.
5) Sharing in groups….don’t have to share. You can just listen. Your choice.
Anything else?
Begin tonight with a guided meditation, meditation on Mattie’s diagnosis and where we are right now. This is to get us centered and focused.
Focus on the lights around the room, close your eyes. Find yourself getting distracted, come back to your breath, your core.
After meditation, time for deep silence. Time to be quiet, still, to go deep, listen to what’s going on with you around Mattie’s illness and caring for Peter and Vicki.
Be in deep silence for 5 minutes or so. Want you to breathe. You are invited to be still, quiet, aware of community, aware of what comes up for you in the silence. In our church we have a song with the words, “be still and know that I am God.”
We aren’t still very often. Don’t get stiff, be relaxed.
Ring the Bell
Guided Meditation
Take yourself….back to the summer….it’s a DC summer. Hot. Humid. Remember what was on your mind….kids….camps….friends….vacations…..your own family going-ons…your own highs and lows….take yourself back to the summer…..when you received the news….that a 6 year old…Mattie Brown…has bone cancer. Did you hear it…from Vicki….from Peter….from email….a phone call….a friend…..how did you hear the news. Take yourself to that moment of receiving. You heard Mattie has bone cancer and you felt…..what. a pit in your stomach…numbness….tears on your face….deep fear….anger….confusion….what was moving inside of you when you heard the news that Mattie has bone cancer…..
The days moved on and the blog reported the news. Two parents….an emotional train wreck, fearing for their child’s future and well being. Mattie still being Mattie.
The testing begins…the waiting begins…..we wait, we read, we feel….we look at the world around us in a new way, with a new field of vision.
Bad news comes again…Mattie’s cancer is found in other bones. This tiny, 6 year olds body is being ravaged by cancer……those dam cancer cells don’t stop. They have a life and power of their own. The cells create pain enough for morphine. The cells create tears, fears.
The days continue….chemo begins….along with the side effects. We read the blog. We talk. We email. We visit. Community is building.
Mattie’s journey continues…..the journey gets hard, painful, emotional. The news never gets better. Now lesions of the lungs. Mattie is taken to the threshold of pain and emotional well being. Vicki and Peter are taken to the same place. We read. We hear. Side by side, we walk with Mattie, Peter, and Vicki as the trauma and nightmare of the journey unfolds, we are taken to a place within ourselves we don’t want to go. We witness friends endure the greatest challenge of their lives.
But here we are. Together.
Holy One, the one of many names and faces, we cross the threshold of life with you by our side, witnessing your Spirit in the hands, the hearts, the lives of those around us. You hold us together as Mattie finds the strength within to live, as Peter and Vicki fight like hell for their only child. You guard each throbbing wound, reminding us it’s not the wounds that give us life, but the tending of them; it’s not the hurt and pain that makes us whole but the mending of the brokenness that brings us life anew.
In the stillness, with music as our comforter, let us hold Mattie and Vicki and Peter in the light, in the darkness. In the stillness and silence around us, let us be with ourselves. Visit us in the stillness, Holy One. Call us into a deeper dimension of the self, into the sacred wells that exist within us where we can find nourishment for ourselves, Mattie, Peter, and Vicki.
Let us be still and silent.
Gently return yourself to the space and pull yourself out of the silence.
Mandala: Sanskirt words meaning of essence, having, or containing. It’s a spiritual tool to help with focus and concentration. Used in meditation practices, especially in Buddhism.
Mandala is a safe space.
This is your safe space. You’re invited to draw a circle. Mandala is always a circle. color, draw, express yourself in your Mandala. Draw in the circle. This is your safe space to express what came up for you in the stillness.
Somewhere in your mandala, write a word or phrase that came up over and over again. Maybe it was Mattie, maybe someone else’s name, maybe an image, symbol, picture of a safe place, dangerous place. Write that word or phrase in your Mandala and then draw, color around it.
Share in groups. You can share about what came up, what your picture means. Or you can share about the experience of being in silence and reflecting---may give you a little more privacy if not ready to share specifics about what your mandala represents.
Share in groups of 4-5.
What came up…….
Now I want you to write a letter to Vicki and Peter about your word or phrase. Not going to send it. But pretend. Tell them about your word or phrase. Give you a few minutes to write.
Your word/phrase going to shape this next prayer. I will offer some words of prayer, time for you to share out loud or in silence your word or phrase. Don’t worry if you think people won’t get it or it will sound weird or something. When we share these words, connects us because we know what’s behind the word/phrase—came out of our core, deep place within us. Share the word/phrase, get a glimpse of what we are carrying with us as we care for Vicki and Peter and Mattie. Also space in the prayer to name those we know, family, friends, ourselves, who are living with cancer, have died from cancer.
Prayer:
Ancient, Holy One, who tends to all things that are hurting and broken and makes all things new, may we receive with gentleness the task to care for and love Mattie, Vicki and Peter. We gather in this community, surrounded by Light, to face the truth and ugliness of Mattie’s cancer; to name what it means to us, so we can be a stronger force of light and love for the Brown family.
Remind us, Holy One, of the acts of love and kindness that can make a difference: openness of a hand, tenderness of an embrace, spaciousness of a heart, graciousness of a meal served and the offering of a vessel of tea or soup, the sharing of prayers for healing.
You are there, Gracious One, in every act of care—acts of kindness and friendship. You are there in the times of pain, suffering, vomiting, outbursts, the deliverance of chemo.
We pray for Mattie’s team of specialists: Dr. Henshaw, Dr. Snyder, Dr. Gonzalez, Dr. Myers, Dr. Toretsky, Dr. Shad. For the child life specialists like Linda and Whitney. For Mattie’s nurses who handle the chemo with love, the medical techs who administer tests with patience, for Mattie’s psychiatrist who is tending to Mattie’s extreme anxiety, for the facility folks who clean Mattie’s room and make it a home. Bless their hands, their hearts, fill their work with compassionate presence.
We know that Mattie isn’t the only one among us praying and living through cancer. Cancer has touched our lives in ways beyond measure, ravaging the bodies, leaving internal scars, of those we love, quieting the heartbeats of those we’ve known and embraced. Tonight we remember the names, the faces, the lives, the stories of those impacted by this disease. Hear our names, Holy One, of those who have lived and died with cancer:
[names]
The journey can leave us speechless, searching for words to express our thoughts and feelings. Tonight, Ancient One, we found some within the deep well within us. We found words that might just express a glimmer of what we are experiencing as we walk this road of cancer with the Browns.
Hear our words, Holy One. Receive our words. Welcome our words. Connect with our words. Let our words build up our community of care. Hear our words offered out loud or silently within.
[words]
With names, with words, with silence—let us hold on to these things with persistence, moving us forward, not knowing what life holds next, but being prepared for how life unfolds for Mattie, Vicki and Peter.
May it be so.
Transition a bit. Finish the sentences. More clarification exercises. Remind us that in the midst of this nightmare, we still have power. We don’t have the power to save Mattie from the cancer growing, returning, or at some point, to save his life. But even in the midst of this nightmare, we can still find something to be grateful for.
Helps balance out the ugliness we read and witness from this journey.
Also…finish the sentence about commitment. You may finish the sentence with what you are already doing. That’s ok. Re-commitment.
Finish the sentence….get in same group of four.
Because of my realizations….share out loud.
If time……mandala……..
Closing:
Stand.
Hand thing. As feeling the pulse…..
Close eyes. Feel our power and energy pulse.
Take a final moment of stillness. Take a breath. Take in what you’ve realized tonight. Take in what you’ve heard from others.
We stand, surrounded by a presence in the universe, in each of us, beyond our understanding, a presence that empowers us to face life and death for the sake of community and friendship. May we show Mattie that we have been taken hold of by this gentle, powerful, life-giving presence.
May it be so.
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