Category: Health and Wellness
I couldn't decide whether this should go under the phyilosophy and religion topic or under this category. as there is medical jargon and such, I suppose it fits here best. anyway ...
As many of you know, I am a huge fan of Matthew Joseph Thaddeus Stepanek, (pronounced stipahnick), the late child poet and peace advocate who was born with an extremely rare form of muscular dystrophy. He may no longer be with us physically, but his work still lives on through his mother, Jeni. since his passing in June, 2004 from complications of his illness, she has worked tirelessly to continue sharing his message with the world, and carry out his request to her to, "Choose to inhale, and not breathe simply to exist."
She needs our help, but before I get into that specific subject, I would like to explain exactly what her form of muscular dystrophy involves. It is a genetic mutation of a much more common disorder, mitochondrial myopathy. Some of an essential component of her mitochondria, (the part of each cell in the human body that helps the cell function), is missing, and unknowingly, she handed the defect down to her children. There was no explanation by physicians in the mid-80's as to why her children were born so unwell. that did not happen until some time in 1992, when Mattie was two years old, the eldest two had passed on, and the third child was bedridden after suffering brain damage due to ceptic shock, (blood poisoning). It was worse for the children because even more of that component was missing. By the time Mattie was four, she was wheelchairbound. as of 2010, she has been unable to drive due to visual impairment, and she relies more and more on a ventilator to breathe. her limbs grow weaker as her life progresses due to the nature of this disease, and she has had cardiac complications over the years.
in a nutshell, this disease effects anything automatic in the human body: blood pressure, heart rate, temperature stability, utilization of oxygen in one's arteries and veins, etc. there are times when these things work properly, and times when medical intervention or something as simple as a gentle nudge or tap on an arm or leg is needed to stabalize vital signs, digestion, etc. As an example, yours and my heart rate ordinarily slows down after physical activity and we can regulate that without thinking about it, where her children would need to be told to take deeper breaths to, "remind," the heart to beat; as she put it in her book, the fine-tuning isn't there.
medical explanation aside, now she is facing another major health challenge. This past week, she was diagnosed with an aggressive form of uterine cancer. I have put out a prayer request for folks on twitter and facebook to see. For those of you who do pray, please keep her in your prayers and pray as I do, that she will come through this, that her work here with us is not finished, and that she can continue sharing hers and her son's message for years to come. even if you don't pray, please, send positive, healing energy in her direction. she needs all the support that she can get, spiritual and otherwise. Often, she is in my thoughts and I hope doctors can do all in their power to help her overcome this scary hurtle. Thank you for reading, and please spread the word.
If you would like to learn more about Mattie, she maintains the website: www.mattieonline.com
Her book is called Messenger: the Legacy of Mattie J. T. Stepanek and Heartsongs. It is available as an audio book through iTunes, Bookshare, and wherever books are sold.
My heartfelt sympathies. I have a brother who died of a different kind of muscular dystrophy 25 years ago, so when I commit these words they are not hollow. I'm hopeful that treatments are better now than they were a couple decades ago, but also realize that it's far more than medical. I hope she and you and everyone else affected can feel the thoughts, prayers, vibes, etc. coming from people, and that you can access the kinds of support you need. If you know anyone in your area that can play calming music for her, see if you can get them to. I did this for my brother as a teenager, his kind caused muscles to turn into fat, so that was painful at times. Things like digestion like you're talking about. I'd play keys for him when it got bad. Anyone who can play something soft / new-age-ish can really help. You'll notice her breathing get more relaxed, stuff like that. Anythin kind of atmospheric, soft and comforting, it helps to be live if you can get someone to do it.
I frankly wish I could be over there with an instrument for you, because although I can't prove it to you, I do know that it works. Even as unskilled as I was as a teenager it worked. Even reading to them helps.
Anyhow you didn't ask for advice, and I'm more interested in expressing my deepest sympathies for her, and for you as someone who obviously cares deeply for her.
Wow Leo, that just goes to show you the power of music.
Yes, absolutely. Honestly, I have not met her yet; I only learned of her diagnosis through her twitter and Facebook pages, but still ... it's quite a shock even if we dont' know her personally. I think online support from people you don't know can be just as uplifting as support from friends and family in one's neighborhood. all these years later, she still receives letters of apppreciation from people who continue to be touched by Mattie's message of hope and peace. Many of the pieces of advice he took to heart and followed well, came from her. Examples of these tidbits of wisdom include: Don't go to sleep on your anger. Count to three before you say something you'll regret. It's okay to disagree with people without being disrespectful, even if the disagreement is between parent and child. balance your priveliges with responsibilities. count your blessings and your burdens in life each and every day. and when asked for marital advice, he said something along the lines of, "If you have a disagreement with your spouse, before you go to bed, say a prayer, come up with at least one thing you loved about the other person before the disagreement that you still love about them now, and share it with them." I interpret this to mean, acknowledge the disagreement, but let your partner know you still love them regardless of what happened. don't dwell on who said what, but let them know through your actions that you've moved on. It is okay to disagree with people and have a debate with them, but once personal attacks start coming into play, then it's time to step away and emotionally regroup. Listening to what someone has to say, choosing words carefully in response, even parroting back what you think they said to iron out any misunderstandings before proceeding with the conversation ... so many common sense parts of communication between people we love, we can learn from this family. instead of repressing his anger at the loss of his older brother, she allowed him to play, to give verbal and eventual written expression to his feelings of loss, confusion, fear and whatever else he was dealing with at the time. she nurtured a child who was of course, still a kid with the practical jokes, toys, and general behaviors of your average child, but these little spurts of wisdom that she taught him to get out onto the page in poetry or essays ... Those will stay with millions for years to come. I don't want his message to be forgotten.
I'll be praying for her. Living with all that, is hard. And, now with her Cancer, that's awful. Mom had Uteran Cancer, but they removed her's in time. So I can sort of relate. I didn't understand Cancer at seven. But having your mom unable to leave the bed, isn't easy, when you're a kid who wants to play and play.
I also know how living one way, and then finding you can't do something like run or even pick up a baby, is hard. One thing I apreciate is people with posative attitudes. I was dealing with some hard medical stuff today, but I always challenge myself to make the doctor laugh, or at least smile.
Today, I started singing. And, got them smiling. And, I just say this to support having a posative attitude.
Blessings,
Sarah
Yes, her life philosophy these days is, "Celebrate life every day in some way." she is loved by so many people, even people she does not know personally, like myself.
Update: She will be going in for surgery early this Monday morning. The medical team has to handle her case different than most people due to her breathing issues and the underlying neuromuscular disease. They will be able to figure out more about this cancer and how best to proceed with treatment after surgery is over.
Keep us posted? Please and thank you!
Blessings,
Me
No news as of yet. Last thing I saw was her friend posting to her wall on fB, saying she was off to the hospital. That was at around 5:00 AM Central time, and she's in the eastern time zone. I suppose no news is good news at this point. Hoping she pulled through okay and is recovering well. I'll update when I know more.
As of monday eveing, she has been in the intensive care unit. Recovery wil lbe slow, but at least she is alive and fighting. No word yet on next steps for treatment.
She is still in the intensive care unit, but doing very well. Chemo and radiation treatment is in her future, and her journey to recovery is going to be very long, but at least she is alive and in the best place possible for her care.
great news. as of yesterday, she has been out of the hospital, and is recovering from surgery at home. Her journey is not yet over with dealing with the cancer, but jumping over this first medical hurtle toward remission seems to have gone well. continued prayers and happy thoughts are welcome.
This is wonderful news!
What a fighter! I hope she's got people who are financially covering her in this. One of the U.S. travesties I now know more than ever is having to manage the financial side of health care / insurance etc. which is a 24/7 operation sometimes.
She is home and getting better each day.
She will be undergoing radiation and chemo treatments over the coming weeks. I thought they got it all out with the surgery ...
Leo! I can give you a big "AMEN!" about insurance. It's frustrating, and irritating! I've always said I should get paid, because I spend more time shoveling bs, than job hunting. And, it's hard to job hunt, when you're busy fighting the "Department of Pointless Paperwork," so John Doe can keep his paper-pushing job. I need equipment, and because it's partly medical, I need a doctor to say why. So, the doctor isn't insurance-loved, because he works more with referrals, than with insurance. So, finding this doctor and getting a "Case-Only-Contract," is a bleeding nightmare! Ugh!
I pity anyone with health issues. Not for the limits, and not for the pain and suffering. To add to that, we have to suffer paperwork. LOL
Blessings,
Sarah Professional Paper Pusher *Grin!
She's starting treatment next week, and it's expected to end near Thanksgiving, possibly earlier.
Three weeks into treatment, she is feeling tired and dealing with low blood counts, but she is hanging in there.
week four update, in her own words:
End of Week Four Note --
"From the time Mattie was very little, I taught him that we cannot always choose everything about life. We cannot always choose what happens to us, or around us, or to those we love or care for. However, we can always have a choice in our attitudes and in our actions. And our choices in attitude and action will always ripple out, and impact some other person or perhaps multitudes, whether in some next moment, or in some other lifetime. Every person matters. And every choice by every person matters - to some person in some moment. "Now I can't claim that I always "practice what I preach." But as a mom, I can say I tried to consistently live - or role model - values and lessons I wanted my children to understand and consider, so they had the opportunity to learn through both words and experience. This week was a tough one, during which I had to pause and make some careful choices, and also some realizations. I had to reach inside to the core of "things that really matter." Bottom line - this was the week in which cancer treatment and underlying dysautonomic mitochondrial myopathy (my neuromuscular disease) engaged in a mega-dispute. And like the ravages of any war, the losses are unfortunately (yet inevitably) measured by destruction of things that were not even a part of the dispute. In this situation, the impact has taken a toll on my body, rather than on the treatment causing the damage, or the underlying condition complicating the damage. Weekly Cisplatin chemotherapy and daily pelvic radiation are harsh for anyone. The treatments themselves result in opposing and conflicting side effects. And unfortunately, in addition to causing toxicity to the kidneys and digestive and other systems, one of the risky side effects of Cisplatin is toxicity to the neuromuscular system and junctures. I hoped that I could dance the treatment dance carefully and cope with the impact successfully. My mind and spirit have done just that. My body tried, but beyond my choice, was unable to keep up this week. I ended up being hospitalized with folks working hard to restore balance to my system. I am receiving great care, and a gazillion IV fluids and magnesium and potassium etc out the wazoo. Things will turn around, I am sure. For now they are just re-syncing my body and helping me begin to be less ill. But since it is the end of the week and this is a work still in progress, it means a pause in continuing my treatment plan. And it may mean a shift in the treatment plan altogether if some elements are considered unsafe or unwise to continue. Chemo and radiation are known toxins, but they are given with the intention of doing good despite harm, but not causing harm beyond the known side effects.
"Once I am better, my team and I will re-assess how to safely and wisely balance choices. In all likelihood, I will resume the radiation treatments, but we will have to carefully weigh the wages of war before resuming the chemo treatments. No one chooses to have neuromuscular disease. And no one with neuromuscular disease chooses to have cancer. But some things in life are just not our choice. I will continue to believe that hope is real, and peace is possible, and life is worthy - in the good times, and in the tough times as well. I will continue to choose attitudes and actions that are beneficial for me, and also for others and our world. As always, I am grateful for your prayers and positive thoughts.
"Week Four was a week of many changes and revelations, and of choices and things beyond choice. Tomorrow, Week Five begins, with 67 days until Thanksgiving. At this time, it is unclear how and when the treatment plan will continue to unfold, and so, I may be counting down beyond Thanksgiving, as I will continue to embrace hope and choose or create reasons to celebrate life. Moving Forthward. Every choice matters.
Jeni (Mattie’s mom / Mama Peace)."
I feel sorry that she has to get Potassium. That's one medicine that plays heck with the veins. I had that injected into me, and blew about four veins. I can tell you, that it hurts like hell's own fire! I was only on it for 2 days. Weeks? I'd love to send her flowers for bravery! Ouchie!
Blessings,
Sarah
what exactly is that for? Sounds dreadful, on top of the treatments and such. yuck.
It's something you are supposed to have a certain amount of in your body. Too little, will kill you, if you don't get help. Too much, is what they use in executions, because, way too much stops the heart. She's juggling a tough rope. They will probably check her Potassium levels a lot, while she's in the hospital. When you have a normal amount of Potassium, you have lots of energy.
Blessings,
The Obvious One
Week 5 ...
End of Week Five Note --
"If you have enough breath to complain about anything, you have more than enough reason to give thanks about something." These are the words 10-year-old Mattie shared a few minutes after learning that he had transitioned from being a child with a life-threatening condition to a child who was in the process of dying. On the particular day that this this realization was made, professionals were not sure if he would live another three minutes or another three weeks, but they did not believe he would survive another three months. While he had always lived on the edge of life, this sudden shift from "possibility" of early death to "probability" of fairly imminent death was a hugely overwhelming piece of reality. Mattie was quite mature for his age in many ways, but, he was also a little boy, with little boy dreams and hopes, and little boy feelings and fears. We were all a bit stunned at his choice of words as a first response to such devastating news. I have come to realize that Mattie wasn't saying we shouldn't ever complain or vent or have a good cry when life becomes challenging, but instead, we should also choose to reflect on and realize something that matters, and that is worthy of embracing and of our appreciation. Gratitude involves choosing to be content with who and how we are as a person - with our differences and strengths and weaknesses and other unique truths. Through gratitude, we can experience joy - even if happiness seems elusive in some moment - and in doing so, we can realize and celebrate that life is worthy. This message of giving thanks for something, even in the tough times, has carried me forthward with a sense of peace, and has strengthened me in spirit and faith across the years. This past week was a very rough one, yet again. And, yet again, I realize that I have so much for which to be thankful. I am grateful for being in the right place at the right time when I had a toxic and life-threatening reaction to the chemotherapy. I am grateful to my family and friends and medical team and hospital staff for their support and care during this tough time. I am grateful that I exist in a time and space where fluids and IV electrolytes and medicines are readily available during a medical crisis. I am grateful that things are improving and that my body is re-balancing and recovering (albeit a bit slower than I would like). Even though the goal was six, I am grateful that my body tolerated four rounds of weekly chemo before the sessions had to be terminated. And I am grateful that they have resumed the daily radiation sessions already (via nifty ambulance rides to the treatment center), so that I am able to continue the fight against cancer in that way. Truly, across the past week there is so much for which I have been grateful. But this Mattie quote about balancing frustration and appreciation and choosing to be content rose up in my heart when I looked up from my hospital bed and saw my nurse hanging a unit of blood for a transfusion I was about to receive. I was suddenly overwhelmed with gratitude for the stranger who donated this unit of cells. I will never know this donor's name, or race or religion or ethnicity or challenges or hopes or dreams. I will only know gratitude, and I have offered a prayer for this person in that spirit. Mattie actually survived, and thrived, for another three years beyond that day when he first shared this quote on gratitude. And when he did die, his final word was, "Yes!" - I believe as an expression of both acknowledgment and gratitude, to me, but mostly to God. When I grow up, I want to be 83. I don't know if I will be blessed with such a gift of time on earth or not. What I do know is that I will keep doing all I can to celebrate life and purpose and serving God here on Earth for as long as possible, because life is worthy, and I am grateful. And when the time comes and I do offer my final words (hopefully sometime after my 83rd birthday), I hope they are "Thank You!"
"Week Five was a week during which I could choose to list much to complain about; instead, I realize there is much more to give thanks about. I have tried to say "thank you" as often as possible throughout this week - as I am grateful for the greatest and smallest of gifts and favors and tasks and support and moments in life. Tomorrow, Week Six begins, with 60 days until Thanksgiving, and beyond - whatever that looks like. I hope to be heading home from the hospital soon, getting back to my revised treatment plan, and for sure - Moving Forthward - with gratitude."
Jeni (Mattie’s mom / Mama Peace).
Latest update from Jeni, posted several hours ago on FB
End of Week Six Note --
"A memo board in my hospital room allowed for shift notes regarding who would be my nurse and tech, pain control and medical goals, and other tidbits of information for each 12-hour period. At the top of the board was a space inviting the patient to share "My preferred name" and "What is important to me." When asked what I would like posted, I quickly offered my preferred name, but had to pause before responding to what is important to me. I wanted to say, "Everything! People. God. Hope. Peace. Life. Purpose. Memories. Dreams. Service. Celebrations. Everything is important to me!" Instead, I said, "Faith."
"Somehow, "faith" is this amazing word, and truth, that brings together all those different bits that are important to me. I would say I am a woman of deep faith. Through faith, I am given the opportunity to believe in things that cannot always be seen, or proven - but that have purpose and goodness. Through faith, I believe in God - one God, who exists with many names, and who celebrates people of so many religions. Through faith, I can choose to embrace that hope is real, peace is possible, and life is worthy - during every tragic or triumphant or trivial moment. Through faith, I can experience joy even when searching for happiness, and receive mercy even when struggling with forgiveness. And through faith, I am touched and strengthened with grace. So often, I hear people react to some close call with the phrase, "There,but for the grace of God, go I." I don't begrudge folks of this phrase - mixed with expressions of relief and gratitude. But through faith, I understand grace as something bigger and better than not being in the car accident two lanes over, or being the parent of the child who beat the odds and survived, or being or not being the one in some particular wonderful or woeful situation. It is with grace that we can move through each and every moment on earth. And it is with grace that we can be called Home to continue faith and purpose, when our moments on earth come to finality. Through faith, everything can matter to me - people, God, hope, peace, life, purpose, memories, dreams, service, celebrations - Everything! And through faith, I can say, "Always, with the grace of God, go I."
"Week Six was filled with more challenges, but much improvement compared to previous weeks. I was released from the hospital after a close call and an 11 day stay, but continue to need round the clock intravenous fluids and electrolytes as my kidneys and neuromuscular system slowly recover from the damages done by the chemotherapy. I completed my 25 daily sessions of external radiation treatments and am dealing with the cumulative side effects that will linger a while longer, and have scheduled the simulation and consult for "brachytherapy" - the next type of high dose weekly radiation therapy that I will receive across the next six weeks. Week Six also offered some nifty moments - like stopping for a McDonald's ice cream cone on the way home from the hospital, and being welcomed by the grandkin with excited hugs and a homemade banner. Tomorrow, Week Seven begins, with 53 days until Thanksgiving and beyond. I am moving Forthward, with many hopes and also many hesitations, but all of them rooted in faith, and touched with grace."
Jeni (Mattie’s mom / Mama Peace).
Update from Jeni, posted yesterday:
End of Week Seven Note –
"A little more than 23 years ago, I was diagnosed with a rare mutation of a rare
adult-onset neuromuscular disease. At the time, I was still running a few miles a
day, and coaching and playing multiple sports. Yet, I was told that I probably
had only six months to ten years to survive. Within a few months of my
diagnosis, all four of my children were diagnosed with an even rarer mutation
and devastating infant-onset form of this already rare condition. (Yes, this Irish
Catholic woman had birthed four children across a four and a half year time
span). By the time this diagnosis was finally offered, my oldest two children –
Katie and Stevie – had already died, and my youngest two children – Jamie and
Mattie – were dependent on ventilators, oxygen, blood transfusions, and other
medical and disability supports. Jamie died a few months later, but Mattie lived
“almost 14 years” on earth (stated like this at his request – to be given credit
for getting within three weeks of that next birthday). Across time, the medical
world began referring to this condition as “dysautonomic mitochondrial
myopathy” – a label that encompasses the symptoms and general cause,
without overwhelming folks with the specific deletions and scientific mutation
descriptors. And, across time, I became an expert on my children’s condition,
and worked with a team of experts who were also willing to become experts on
a mega-rare mutation of a condition that affected only five known people in the
world – my four children, and me. What we came to realize is that surviving and
thriving with this type of neuromuscular disease (for which there is no cure) is
all about “living with vigilance” – always staying at least two steps ahead of
symptoms and potential medical stressors or crises. It was about not letting the
children get to the point of medical stress, by carefully watching and managing
their foods and fluids, their blood counts and oxygen levels, their breathing and
heart rate and blood pressure, and more. It was about letting go of “the norms”
and typical numbers and textbook protocols that guide care for most kids, and
treating them based on a mix of hindsight and listening to what their bodies told
us they needed, even if it didn’t quite make medical sense (yet). This system
worked with increasing benefit across time, and we all learned more and more
about the idiosyncratic (and just plain bizarre) nature of dysautonomic function
paired with a rare mutation of a mitochondrial myopathy. I believe this vigilance
and out-of-the-book thinking had much to do with why Mattie – the youngest –
lived the longest of the four children. As my own condition began to progress –
first with my need for a wheelchair two decades ago, and then my need for
supplement oxygen and ventilation a decade ago – I began adapting this “living
with vigilance” to my own situation. And for a very long time, it seemed to
work. My condition is not nearly as devastating as the mutation my children
inherited from me (insert maternal guilt here), but it is progressive, and I have
learned to listen (at least when convenient ☺ ) to the signals my body is giving,
so that I can avoid medical stress, which will hopefully translate into longer
surviving and thriving (ever in pursuit of that 83rd birthday!). For years, I was
able to dub myself “perhaps the healthiest generally-decrepit person in the
world.” Despite my declining physical abilities and increasing medical
complications, I enjoyed serving as a faculty associate at a major university,
running a peace-missioned non-profit organization, mentoring hundreds of
global youth who are seeking to make our world a better place, and having
some great hobbies on the side. All I have needed to do across all these
decades is live with vigilance, and somehow, I have defied that “expiration date”
prognosis from way-back-then. But, then came July… across the span of a few
days this summer, I went from relying on vigilance to maintain my “longer than
anticipated shelf life” existence, to a world turned upside by the word cancer.
It’s like I had learned to survive and thrive in this house on a cliff – a house
defined by dysautonomia and neuromuscular disease, but I knew where the
strong floorboards were, and I knew where the menacing wall cracks were, and
I knew which way the wind could howl but not intimidate, and when to add
reinforcements even during a seemingly calm day. It is not a house I would
have chosen to live in, but one that was built and grown accustomed to across
the years, as I lived with vigilance for my children, and myself. This house is my
home – filled with echoes of the tears and laughter and love that are a part of
each nail, each joist, and the very foundation. Cancer, though, is like a
hurricane that comes out of nowhere, and that defies relying on vigilance for
survival. Cancer is about living engaged in a battle. A wearisome battle where
one has to pay attention to details, but vigilance neither fixes nor changes nor
hastens any “what next” realities as treatment options are pursued despite
harsh side effects. And when the battle ends, and the term “survivor” (or not)
becomes a label, it is about letting go of day-to-day vigilance. Awareness – yes.
Ever-respectful of the possibility of recurrence – absolutely. But vigilance – no.
During the battle, vigilance can result in frustration, with no impact on outcome.
And beyond that battle, vigilance could impede thriving, despite surviving. It is
tough to live in a house on a cliff that is best maintained through ever-vigilance,
and to have it shaken by a storm in which ever-vigilance can either result in
frustration that weakens the foundation, or that does nothing at all to improve
the situation. But such is my reality (for now). And so, I will strive to balance
this dissonance – perhaps not with medical vigilance, but with prayer and with
gratitude for the support of family, friends, and my medical team who give me
reasons to smile and laugh, even during times of frustration.
Week Seven was filled with more improvements, but also more frustrations –
mostly because even with vigilance, I am unable to hurry any sort of “what
next” along. My electrolyte levels are improving, which means my kidneys are
healing. But my blood counts are still trending low, and another blood
transfusion is being planned. Perhaps because I am so tired, it has been more
challenging than usual for me to cheerfully cope with the cumulative and
(evidently longer-lasting than I anticipated or would like) impact of weekly
chemotherapy and daily radiation treatments that began back in August. I so
want my battle with cancer to be a thing of the past, so I can return to careful
vigilance and living a full life around the disability and cliff-house I have adapted
to (again and again even as it progresses each year) for more than two
decades. Today, Week Eight began, with 45 days until Thanksgiving. My goal as
I move Forthward this week is to focus on realities other than frustration, by
being vigilant about celebrating life, every day, in some way - instead of trying
to hasten "what next" and things beyond my control. Remembering to celebrate
the good stuff makes life worthy, even during the tough times.
End of Week Eight Note –
"Folks handle stress in all different ways. Some eat or drink, while others can’t eat, or won’t drink. Some cry or laugh, or talk, while others can’t cry, or laugh, or won’t talk. Some turn their minds and hearts away from stress and deny the situation, while others completely run away – from the situation, or the people, or living. Some become victims, and some become attackers, and others become numb. Some folks get angry with God, others turn to God pleading and bargaining for stress relief, and yet others (perhaps more often those looking in at the stress rather than those immersed in it during some moment) offer statements like, “God doesn’t give you more than you can handle.” Yes, folks handle stress in all different ways. Clearly, choices that may result in any harm to oneself or to another in body, mind, or spirit are not healthy or okay. However, I would not try to conclude that some particular non-harmful way of dealing with stress is the right way, or the best way, or the absolute wrong way to handle stress. Coping styles are quite personal. I will say that I have a hard time with the “God doesn't give you more than you can handle” concept, because I don't believe God "gives" us challenges. Tough stuff just happens. It is a part of life, or a result of nature, or sometimes, the unfortunate or devastating consequences of free will choices – our own choices, or the choices of others. Challenges happen, and stress becomes real. I do believe though, that God walks with us, and weeps with us, in any challenge, and also in any celebration, and in all realities in between. Of course, it is easier to feel the presence of God during the good times, or even the everyday mundane moments of life. It can be so much harder to recognize and know God’s presence during a crisis, and stress. Sometimes, I do feel God during times of intense stress, and sometimes, I have to rely on religious rituals to keep me practicing and connected to God when I am in too much pain to feel any essence of spirituality, or God’s presence beside me or within me. Yet, I have prayed, and prayed and prayed, and prayed and prayed, and prayed even more to God with desperation during many stressful times. My life, thus far, consists of more than five and a half decades, with most of my chapters filled with and defined by countless challenges, and a whole lot of stressful situations. "Across these decades, I have reflected more and more on the concept of prayer, especially as I enter prayer again and again during challenging and stressful times. And while I am a true Catholic – offering daily prayer rituals and novenas that serve as both inspiration and comfort to me – I also enter prayer as a way of engaging in conversation with God, or at least a connection with God – rather than just a plea-bargain, or a wish list, or even a “To Do List for the Deity.” Talking with God, and listening to or for God – through life, or through nature, or through choices or words or actions (my own, or those of others), takes energy, and focus. And this energy and focus shifts me from a mindset immersed in (or overwhelmed by) whatever the stress of the day or current chapter might be, to something else – perhaps others, or nature, or life, or even reflecting God’s presence for those who are immersed in or overwhelmed by their own challenges and stress. In addition to prayer, I have other go-to strategies that are inevitably a part of how I cope with stress. I am one of those folks who handles stress in cognitive ways. I gather information and insights. I do research or personal inquiry about whatever is of concern. I organize files, or thoughts, or whatever is at hand. My Fam' will offer that I have even been known to "alphabetize” my ever-so-nifty sock collection (yes, this joke is rooted in reality). Indeed, the more stressed I feel, the more order I try to create and bring to my world, and to my mind, through organization. I guess it is a crazy coping strategy – attempting to create order and choices amid chaos and things beyond my control – but it often works for me, providing some shreds for the proverbial shawl of sanity I rely on (and refer to) so often. Sometimes though, beyond prayer, and beyond cognitive strategies, I just need a "Mental Pause" – a bit of time and space to process the moments that are happening around me, or with me, or to me, or beyond me. Week Eight has been one of those weeks. A week filled with nifty moments and realities – like a grandkin celebrating another birthday, and hearing from so many of my Peace Club Kids and Global Teen Leaders, and waking up each morning – with the words “Thank You” on my breath. But it was also a week filled with not-so-nifty news and realizations. A week spent in more and more prayer – both novenas and conversations – as I try to process all that has happened across the past four months, and all that might or might not happen in the coming days and months, and hopefully – years and more decades. I want many more chapters for my life story, whether they are filled with challenges and stress, or prayer and conversation, or celebration or any day-to-day whatever’ness. Reality, like prayer, is not really about wishes though. But, it is about hope. And hope is real – as Mattie said, hope begins with an attitude, and an attitude is a choice. And when that attitude is rooted in faith, hope becomes an energy that somehow moves me through this moment, and into some next moment. For me, hope is about embracing life, as it is, and while it is, and somehow finding reason to celebrate, and know and reflect and serve God, even while coping with challenges and stress. So, I have taken a bit of a Mental Pause this past week, for prayer and processing, and for gathering information and insights, and yes, for alphabetizing my socks – as I sort and cope with a lot of “stuff.” Last week, I received another blood transfusion, which helped sync and settle some of the autonomic system and neuromuscular disease issues I was experiencing due to low blood counts – caused by cancer and treatment for cancer. I learned that my body and systems might continue to improve a bit, but that I will probably not ever fully recover from the collateral damages done by surgery and chemotherapy and radiation. And even though these damages are more than anticipated – both in severity and in permanence – and even though some of the treatment plan was terminated sooner than the original goal due to the toxic reactions beyond what my body can safely handle, after being immersed in this week of Mental Pause, I have to say that I have no regrets about choosing to “go for it” and at least try all of the treatments available in the effort to defeat cancer. Years ago, I learned a valuable lesson from a wise teen named Cecy, who lives in South Africa and who has faced many, many challenges and stress. She said, “Do not get lost in the abyss of regret. Regret empties the spirit. Move forward embracing something, anything, that you do not regret, and that you would do again and again and again and again. As my brother, Mattie, said – Remember to play after every storm! – somehow.”
"Today, Week Nine began, with 38 days until Thanksgiving. I will move Forthward from my Mental Pause, taking with me reflections of the nifty moments of the week, and leaving behind (to the best of my ability) any regrets I may have about my choices across the past months. I will "Remember to play after every storm!""
Jeni (Mattie’s mom / Mama Peace).
End of Week Nine Note –
"When mentoring global teen leaders during the annual Just Peace Summit, I often ask them to reflect on a half glass of water, and then raise their hands if they see the glass as half full, or if they see the glass as half empty. I also then ask them to raise their hands if they are suddenly thirsty, or have to pee, or are wishing they were on vacation at an ocean, river, or lake. The point is this: there is no right or wrong answer.
"Part of how we view the world – past, present, and future – is an expression of our life experiences. During times of celebration, it might be challenging to see the glass as half empty. But, it would also be challenging to see the glass as half full if the stomach is empty, or the throat is dry – literally or figuratively.
"Part of how we view the world – past, present, and future – is also an expression of what has grown to matter to us (or inspire us, or empty us). What matters to us is often nurtured (or suppressed) in so many ways, from education and opportunities, to force and fear, to external reinforcers and internal temperament, and of course, experience.
"If life experiences and what has grown to matter to us (or inspire us, or empty us) are not balanced, and if life is more weighted with burdens or with blessings, it is likely to impact how we see not only this proverbial glass, but also other hypothetical situations or unknowns, and even our realities – past, present, or future.
"However, while part of how we view the world does grow from our experiences and disposition (or pre-disposition), part of how we view the world also comes from our choices. As I have said before, and I am certain I will say again and again and again – we cannot always choose our life experiences, but we do have choices in how we reflect on and respond to any reality.
"While we cannot always choose what happens to us or around us or to those we love, we have some choice in interpreting “what was” and in considering “what is.” And more important, we do have some choice in shaping “what next?” – and how any reality touches others, and the future, and even our own views and experiences.
"I include these “half glass” musings during the Just Peace Summit each year because this event is rooted in Mattie’s peace message and grown from his final book, and Mattie shared a lot about perspective and choice. He wrote and spoke often about balancing needs and desires – our own and others’ – which can enable us to be “okay” with who and how we are as a person. Once we are able to be “okay,” he encourages us to choose to be content, even grateful, with who and how we are, which involves realizing or creating meaning in both our strengths and weaknesses, so that somehow, they become a source of purpose, and gifts for others and for our world.
"Mattie was generally and genuinely a “glass half full” type of person. When he was six years old, he even penned a poem titled, “Philosophy Glass,” in which he expresses how important it is to him to view each of his glasses as “at least half full, because if you live feeling like your glass is half empty, well, it may as well be empty all the way.”
"I am proud of Mattie for his choice to realize or create a “glass half full” attitude and worldview. By age six, Mattie had already experienced a lot of loss and grief, and a lot of pain and fear. But he had also experienced a lot of good stuff, and had been nurtured with a sense of optimism, and with resilience, which could give him opportunities to realize hope and joy, even in a very, very challenging (and brief) lifespan.
"I know for sure that part of Mattie’s sense of purpose and his faith in God and humanity came from who and how he was created to be in this world. But I also believe that part of who and how he became and existed in this world grew from how I and others tried to support him in understanding the things that really matter – which includes all people, and all life, despite any differences, and despite any celebrated strengths and achievements and any frustrating limitations and disappointments.
"Today, I am a full half-century older than Mattie was when he shared this particular “Heartsong” poem, but I continue to be inspired by his words, and by his perspective and shared messages, and most of all – by his choices in living and in being such a “glass half full” person. However, I also have to say that I believe it is okay to see that proverbial glass as either half full, or half empty, or anywhere in between.
"Like most people in the world, Mattie’s life story, and my life story, they are a mix of blessings and burdens. And optimism, resilience, hope – seeing the glass half full – these choices are not about ignoring our burdens, but about choosing to acknowledge, and focus on, and be strengthened by our blessings as well. Balancing realities – especially conflicting realities – has a lot to do with balancing our focus, and considering what really matters to us. As Mattie would say, it is about choosing to be content with who and how we are with ourselves, and with others. And living with optimism and resilience and hope -- and reflecting meaningfully on that proverbial half glass -- these choices are about deliberately and considerately focusing on balancing the great stuff and the tough stuff, because every life story does have purpose, and every purpose can touch others and our world with something worthy.
"Truly, beyond experience and position, it does come down to choice. And, it is more than just how we choose to see that half glass of water. What matters as much, or more, than seeing any glass as half full, or half empty, or anywhere in between, is our "what next?" What really matters is how we choose to reflect on and respond to some reality -- past, present, or future -- and ultimately how we then choose to shape that reality as we move into some next moment, and reach out to others and to the world and into the future with what grows from any reality, and from our life story.
"Perhaps we do see the glass "half full." We see good things, and feel that life has been good to us, and to our family, and to our community. That is wonderful. But, will we then be satisfied with a half full glass? Will we then not choose to seek or nurture optimism and resilience and purpose because things seem okay for us in some moment? We can always choose to give breath and voice to hope and to peace, for ourselves and for others.
"Or perhaps, ours has been a life filled with so many challenges and storms that our reality is a vision of a glass half empty. Perhaps we have self-doubts – about our work or goals, about our worth or purpose. Well, then there is always room for self-growth, and change. It is not always easy, but we can still choose attitudes and develop habits that reflect optimism – not denial, and that realize or create opportunities for optimism and resilience – for ourselves, for others, for our world.
"Like Mattie, I would say that I, too, am generally and genuinely a "glass half full" type of person. And like Mattie, my life story is filled with a lot of loss and grief, and a lot of pain and fear. But like Mattie, I have also experienced a lot of good stuff, and have chosen to nurture a sense of optimism, and to develop strength through resilience, which gives me opportunities to realize hope and joy, even in a very, very challenging lifespan that will likely be shortened by disability and disease.
"Week Nine was a week that really had me considering my choices and perspective on "what next?" – including whether I could or would or should see my glass as half full, or half empty, or somewhere in between.
"Even though we anticipated treatment sessions that would last into November, all treatment for the cancer I was diagnosed with early in July officially ended this past week. Some treatment ended because I completed all the planned sessions. But some treatment ended because my body could not handle all the planned sessions. I am left trying to balance hopes and hesitations, wondering and worrying and wanting to believe that the surgery and chemotherapy and radiation and brachytherapy I did receive was, and is, and will be, "enough."
"Yes, I am generally and genuinely a glass half full type person, but I am also compulsively and consistently a high achiever. So ending any part of the treatment plan before completion of all planned sessions was both disappointing and frustrating to me. And, it was more than a bit scary. I want cancer "gone" – completely, and permanently. I want to get back to living in my familiar house on the cliff – ever-accommodating the unsettling progression of neuromuscular disease and rooms shadowed with remnants of grief and loss, but all built on foundations strengthened by optimism, resilience, and hope. That house – with all the tears and laughter, and memories and dreams – has become my home, filled with light, and purpose – past, present, and future.
"Somehow, even amid all these hopes and hesitations – with so many unknowns, and with the few knowns including some level of permanent collateral damages to my body and underlying condition resulting from the cancer treatments – somehow, I am able to see even this glass as half full.
"By somehow, I mean with the ongoing support of my kin-family, and with the ongoing support of my global family and friends – who have listened to me, and shared affirmations with me, and helped me find reason to "live, love, and laugh" even during the toughest moments.
"By somehow, I mean with the ongoing support of my medical team – who are continuing to "walk around the issues" I am facing rather than just walk away, and consider and provide quality care and do everything possible to help me recover as much as possible before we collectively say, “Okay, this is as good as it’s going to get.”
"And, by somehow, I mean with the ongoing choices I am making – that will give shape to and create “What next?” – as I move Forthward with optimism, and resilience, and hope. I am not in denial. I know that on the one hand, my glass is, in fact, half empty. But I also know that on the other hand, my glass is, in reality, not only half full, but overflowing – with gratitude, and hope, and purpose.
"Tomorrow, Week Ten begins, with 32 days until Thanksgiving. I don’t really know for sure what long term or permanent issues I will be dealing with as a result of this cancer and the harsh combination of treatments used to fight it. I don’t really know for sure that every cancer cell is gone, or that my underlying condition won’t continue to rapidly progress. I don’t really know for sure exactly how I will celebrate “the end of cancer treatments” and Thanksgiving this year – except that somehow, I can, and I will, and it will be wonderful and worthy and with so many people who matter."
Jeni (Mattie’s mom / Mama Peace).
End of Week Ten Note –
"As an Irish Catholic, I enjoy knowing that the ancestors of my heritage had something to do with what is known today as Halloween. Many, many full moons ago, Christian folks in Ireland and Britain would don costumes portraying saints and wicked things, and then act out classic battles between good and evil as a part of teaching about and asking for God’s blessings for our world. These annual activities were held on October 31, and back then, the day was known as “All Hallows Eve” – or “the night before The Feast of the Saints” – which was commemorated on the first day of November.
"Before I understood that “hallow” meant “holy” or referred to saints, I used a lot of variations of this word as a young child when saying The Lord’s Prayer. Examples: Our Father, Who art in Heaven – hello, be thy name…. or, halo be on thy name… or even, how loud be thy name… anything I could think of that sounded like the word I was hearing, and that seemed to make some church-type sense in a prayer .
"I don’t remember exactly how or when I realized the true meaning of “hallow,” but I do remember being fascinated with the realization that the spooky-fun night of what we now call Halloween had its roots in the significant-religious tradition of what we now call All Saints Day.
"More specifically, I remember being amazed as a child, that even something that seemed so scary and dark – Halloween night, by then filled with the 1960s traditions of telling ghost stories by candlelight and Trick-or-Treat adventures dressed as a witch or skeleton or other ghoulish characters – was actually a preparation day of sorts, for something so reassuring and Light.
"Reflecting on the origin and transformation of Halloween is something I haven’t done for a very, very long time. But I guess for obvious reasons, I did find myself considering it again this season, as I continue my journey to defeat cancer and deal with the after-impact of treatment – while choosing to balance some dark and frustrating truths with the energizing realities of hope, and faith.
"I will most likely always enjoy the modern-traditions of Halloween – carving pumpkins for the front porch, decorating the house with spiders and cobwebs and skulls and other ghastly stuffs, and of course, handing out candy to folks of all ages costumed as monsters and fairy tale characters and ninjas and all sorts of other creative creatures and beings and what-nots.
"But I will also most likely always be amazed by the real meaning of All Hallows Eve. Upon reflection, I remember and realize that the haunting thoughts of imaginary ghosts and the disturbing eeriness of sinister candlelit tales (and also of very real and scary challenges) can all transfigure into the intercessory truths of authentic spirits and shift to the inspirational lives of the now hallowed saints (who also often faced very real and scary challenges).
"It’s all about balance and perspective.
"It’s about having fun and living in the present, yet with an understanding of the past and an openness to the possibilities of the future.
"It’s about enjoying all the festive decorating and shenanigans that are part of modern-day Halloween, but also appreciating the roots of this transformed hallow-eve holiday.
"It's about "what now," but also making sure I am considering and preparing for “what next” – both a day to celebrate ordinary mortals who are recognized for choosing to live extraordinary lives of virtue, and also the rest of my life which will inevitably include battles between good stuff and not-good stuff, and asking for God’s blessings on my past, my present, and my eternal future.
"This year, I considered dressing up as a “glow stick” for Halloween – a morbid poke at all the radiation I have received across the past months to try and eliminate every cancer cell from my body. Instead, in true modern tradition, I donned a costume celebrating the fun-side of macabre. I was Morticia from The Addams Family, and my hand was Thing. Yes, Thing served me Cabernet, and drove my wheelchair joystick as we traveled the neighborhood Trick-or-Treating with the grandkin.
"I was very happy (and quite relieved) that I was up to celebrating this year. Early on during this week, in some ways, I was feeling so much better – compared to some of the other weeks across the past few months. But as the days progressed, I also continued to deal with ongoing challenges created by fighting cancer – ironically, a classic battle of between good and evil. The surgery, chemo, and radiation were all necessary, but they have resulted in long-term deficiencies and damages to body systems and organs.
"These after-impact challenges were highlighted this week with trips to urgent care and the emergency department, to deal with a hefty infection that (combined with the ongoing electrolyte imbalance) triggered a cardiac issue. Some antibiotics, a bag of IV magnesium, and a nifty cardiac monitor patch later – and things seem to be settling down again, which opened the door for a celebration of the season in style.
"Tomorrow, Week Eleven begins, with 24 days until Thanksgiving. My medical team is still sorting out a lot of “what now” and “what next” after-impact issues resulting from cancer and the treatments for cancer. And I am still sorting out a lot of “what now” and “what next” physical and medical and emotional issues and changes as well. While there are still a whole lot of unknowns, what I do know for sure is that I am up for the challenge of balancing the good stuff and the not-so-good stuff, because every “now” and “next” can be a hallowed and worthy moment if I reflect on it with the right perspective."
Jeni (Mattie’s mom / Mama Peace).
End of Week Eleven Note –
“Choose to inhale… do not breathe merely to exist.”
Mattie J.T. Stepanek
My friend, Nell Paul, often said, “A river without banks becomes a marsh.” Whether a small meandering stream or a miles-wide rapid waterway, banks give direction, and some path to follow on the journey to “what next.”
The banks and path inevitably shift and change across time, but there is some direction, some focus, and some reason for “what next.” Even during a storm, the banks may overflow or erode, complicating the flow and focus, but somewhere beneath the turmoil, there are foundations, or somewhere beyond the turmoil there may be external supports, or guidance.
I realize Nell was talking more about "setting limits" along life's journey when referring to this old quote from the 1800s. But what I know for sure is that without banks, a river can indeed lose direction, or momentum, or even movement at all, and become a marsh. And a marsh can quickly begin to stink, especially when there is no particular storm raging, which can create (or force) change and perhaps focus. And when things begin to feel (or be) stinky or stuck – when we are in some gray area in life – it can be very frustrating.
This week was one of those in which no storm was really raging, nor were all storms really gone, nor was there any clear forecast for "what next."
I am done with treatment for cancer. But treatment for cancer is not done with me.
During July, surgery was completed.
During August, chemotherapy and radiation therapy were begun.
During September, chemo was stopped earlier than planned because my body could not tolerate it.
During October, radiation ended because all sessions deemed necessary and tolerable were completed.
Now, during November, as I have been doing for months, I am counting down the final couple of weeks until Thanksgiving – when treatment will be over and I begin to "move forthward" and beyond this chapter of my life story, into some “what next.”
Collectively, surgery and chemo and radiation helped remove a large cancerous tumor and fight lingering and invasive cancer cells. Yet collectively, surgery and chemo and radiation have also upset the fine-line balance of my underlying condition and systems, and left me in a gray area – or a marsh of sorts.
With good cause, I chose to be a storm chaser and fight cancer with a collective of harsh treatments. I weathered that storm, knowing that there could (and most likely would) be inevitable collateral damages. But the “after-impact” is greater than (and longer lasting than) I anticipated – though it is actually less than what my medical team knew could (and more likely would) be possible.
I have no regrets. But I am now having to figure out and adjust to "new norms" and a lot more "unknowns” in my life. And these new challenges and unknowns are necessitating their own assessments and treatments. Like a river without banks, there is no clear “what next” – and that is rather unsettling.
Back in July, as devastating as the diagnosis of cancer was, I felt I had “direction.” I had some banks for the river. I also knew I had a foundation rooted in hope and optimism, and gratitude for each day. I knew I was a person with the strength of resilience. And, I had the external supports of family and friends, and an amazing new medical team – all ready to help and guide and give focus and direction as we faced this mega-storm.
Cancer and the treatments to battle it have eroded the banks, and also frustrated (or annoyed, or overwhelmed, or intimidated, or many other things) just about all of us involved in this journey. And, I have learned that although the roots of my emotional and spiritual foundation are indeed strong and positive and resilient, my medical and physical foundations are far more fragile and tenuous than I realized (or would accept) before all this began.
Back in July, Thanksgiving seemed a long way off, and I was cautiously optimistic about my countdown. Now, as Thanksgiving quickly approaches, rather than preparing to “look back” on cancer and treatment, I am ending up in this gray area – a marsh of sorts.
I am unclear about “what is causing what” medically. I am unclear about “what is the result of what” medically. And I am unclear about “what to do (or not do) medically about so many unknowns and ‘whats.’” Yep. This is a marshy gray area.
Finishing cancer treatments can be complicated for anyone. But I came to this with so many “complicating bits of this and that” born of my underlying neuromuscular disease, which resulted in cardiac and pulmonary challenges. And now, more “complicating bits of this and that” have been swamping me, and my medical team – new and perplexing “after-impacts” of cancer and cancer treatment.
Yes, I am done with treatment for cancer. But no, treatment for cancer is not done with me. I am in a gray area. And it kinda stinks. And I am frustrated, and feeling stuck, and also a bit scared at times. I have to really think about "choosing to inhale."
Yet, in the same moments that I brace myself for some next icky unknown moment, I also realize that stinky as any marshy moment might be, I am “here” – choosing to inhale, and truly grateful to be here each day.
While receiving another magnesium infusion today – for the kidney damage I am dealing with as a result of treatment – I was talking about this “river to marsh icky’ness” and my feeling of stagnation-frustration with my friend, “Diane from Rhode Island.” I told her that it is hard to be in this gray area. I said that I am not necessarily looking for firm answers or a crystal ball (actually, a crystal ball might be a nifty accessory), but I am in need of direction, or some concept of “what next” and how I might “move forthward” in spite of more complications and “new norms and unknowns.” I need banks for this river, so I am not stuck in a marsh.
Diane looked at me and said, “You know, a marsh doesn’t always stink. It only really stinks at ‘dead low tide’ – when there is little or no water. And even if you don’t see it, or notice it, the tides are always changing, and there is some movement and direction. Even in a marsh, things are not really stagnant. And, there can be beautiful life that grows in and from a marsh.”
Wow! And thank you! And – yes! I considered all the photos Diane has sent me across the years – taken during sunrise and sunset and midday and anytime – of the beauty and life that exists in the marsh by her Rhode Island beach cottage. I have enjoyed those photos, and also my own visits to Narragansett and time spent by that marsh. But until today, I never paused to consider that even a marsh can offer amazing gifts, and that the shifting tides can bring opportunities for change and momentum, and direction, at any time.
Even in a gray area, life is worthy. And even amid frustrations, we can adapt, and “move forthward.” And even in a marsh – stinky or not – we can “choose to inhale” and celebrate something nifty about life. It is not always an easy choice, but it is always a worthy choice.
I am not in any way excited about ongoing magnesium infusions and blood transfusions, or about knowing that unknowns will keep being a part of my life journey, and that I will have to continue adapting to “new norms.”
But, I am in every way excited about ongoing opportunities to wake up each morning, and the gift of being willing and able to “choose to inhale” and “move forthward” in any new day. I am excited about my “what next” – and I am counting down the days until I am 83 (which would be 9,755 as of today).
As my oncologist said, “Being alive at 83 with a deficit is better than not being alive at all, but it does not make the bitter pill you are left with any better.”
Today, Week Twelve begins, with 17 days until Thanksgiving. Despite inevitable unknowns and frustrations, my choice is to somehow celebrate life, with all the nifty moments and folks that are here and there, even during (or especially during) the tough times. I will enjoy my journey along river banks when they are clear to me, and I will find meaning and seek the shifting tide in marshes when that is where I happen to be. I will “choose to inhale… and not breathe merely to exist” as I move forthward, and help shape “what next.”
Jeni (Mattie’s mom / Mama Peace).
This is simply amazing!!! Really inspiring!
So I'm behind by two weeks, I'll get weeks 12 and 13 posted ASAP. School takes top priority right now. Don't worry, I haven't forgotten.
End of Week Twelve Note
"How we want to be known, and remembered, is how we should choose to live, and be, in every moment at hand." ---
Mattie J.T. Stepanek
"During interviews and presentation Q&A moments, Mattie was often asked how he wanted to "be
remembered." As his mom, my mind and heart always shuddered a bit when this type of topic became the focus Ð Mattie
was only 5 to 13 years old when responding in a public way.
True, Mattie knew from a very young age that his medical
condition was, in all probability, going to greatly abbreviate his length of living on earth.
And true, Mattie wrote
and spoke with depth and wisdom that is typically associated with much older writers and speakers, and he was
actually quite comfortable with these conversations.
Still, he was a child - my child.
So while I learned to
anticipate this type of discussion, I always listened carefully to both what and how he responded. I wanted to tune
into any hesitancy on his part, which may lead to a private conversation I would have with him later as we
processed the day, and "what next."
"One of the first times I heard him respond, I was actually surprised, and also
amazed, at what he shared - "When people hear my name, tomorrow, or a hundred years from now, I hope they pause,
and smile, and say, "Oh, yes! Mattie - a poet, a peacemaker, and a philosopher who played!""
I was used to Mattie
shaping words into clear and inspiring messages at home, and also during spontaneous conversations with others in
the hospital or at school, or on live and un-rehearsed television programs. So I guess what surprised me was that
even at a young age, he had already put some thought into considering his reputation and his legacy. And I know
that what amazed me, was that these were not simply words Mattie was saying, but a way of living and being - at
home, and in the community.
"From the time he was very little, I tried to teach Mattie that how we reach out and
touch others and the world often (though not always) has something to do with how others and the world might reach
back to touch us - or know and remember us. I wanted Mattie to understand that despite any personal or global
challenges, he could have something to do with his life story - and with how he chose to live the truths of his
story, and how the truths of his story might touch others in a good and lasting way.
Mattie grew to understand that
the specific details of each life story chapter were not what guided his purpose, but instead, his purpose could
guide how he and his story would unfold, and be known (and remembered), for life. So even from a young age, Mattie
deliberately made choices in how he touched others and the world, and also in how he allowed others and the world
to touch or impact him.
He didnÕt know exactly how or when his life story would end, but Mattie knew that each
moment he had on earth was a gift. And he realized that within each moment at hand, he had the opportunity to
choose hope and embrace peace, and that through his attitudes and actions, he could shape his reflection of, and
response to, any life story reality.
Mattie believed that his story, like every story, had purpose, and mattered in
some way, and could touch at least one other person in a meaningful and good way. And he was excited that he had
the ability to have a part in creating his own reputation and legacy through his choices, and through the words and
way of being.
By the time he was 10 years old, one of my most favorite "Mattie quotes" had become, "How we want to
be known, and remembered, is how we should choose to live, and be, in every moment at hand."
"As a child, I had no such lofty and nifty ambitions as Mattie expressed at this early age. I knew I wanted to go into some "helping profession," and "do something that helped people feel good, and know they mattered." And I knew that I enjoyed writing and photography and storytelling. But I had no specific career ambitions, and I had absolutely no serious philosophical musings about how I wanted to "be known, and remembered."
"It wasn't until Mattie and I engaged in so many conversations about life stories, and pain, and peace, and purpose, and more, that I really paused to consider
such truly important matters. Today, what I know for sure is that considering our reputation, and even our legacy,
is indeed a truly important matter.
I guess I am most generally "recognized" these days as "Mattie's mom" (and for
some, as "Katie, Stevie, and Jamie's mom" as well). I am also called "Mama Peace" by global teens and school
children and adults - a lovely title bestowed on me quite a few years ago by "The Imam and Pastor" of Nigeria - two
men who used to be archenemies, but who today work collaboratively for peace. And, others refer to me as Dr.
Stepanek, mostly in academic or business settings.
"All of these are accurate names for what I do as a person, and
as a professional.
But what I actually consider to be my "I am," statement - or how I want to be "known, and
remembered" - is more of a metaphor, which guides my choices in how I "try to live and be, in every moment at
hand."
Using Mattie's expression as a template, I would say, "When people hear my name, tomorrow, or a hundred years
from now, I hope they pause, and smile, and say, "Oh, yes! Jeni - a Mommy - Mama Peace - and a Welcome Mat for
folks around the world!"
"What really matters most to me, is helping other people realize that they matter - to me,
to others, to our world. I want to be known, and remembered, as someone who facilitated people of diverse ages and
abilities and aspirations in realizing purpose, and in "moving forthward" with hope, and with resilience, and with
choice. I want to help people know they are worthy, and life is worthy, and that I am praying for them, and rooting
for them, and welcoming them - whether they need to rest a bit, or shake the dust off and start anew, or be
encouraged to embrace "what next."
I may not be able to "fix" things for people, or for our world, or even for
myself. But I want to live with and serve with purpose, even amid and beyond whatever personal (or global)
challenges I am facing. I want to nurture others so they are empowered to choose to celebrate life, somehow - with
purpose - regardless of what was, or what is, and what might be, or even will be.
And so, that is how I try to live
and be each day, as I embrace each moment at hand.
"This week was another series of days with no real changes in
medical needs or treatment - which in some ways is a good thing I guess. But, it was also a week during which I
received an additional (and amazing) analogy for how I am known, and might be remembered, at least by my
oncologist.
She told me I was like a "running back" in life.
Her analogy was part of an incredible gift she was
giving me - a football jersey signed (for me!) by Alfred Morris, #46 of the Washington Redskins. She knows I am a
huge Skins fan, and said that asking this particular player - a star running back - to autograph a jersey for me
was a perfect fit.
"A running back is all about getting the job done, and it's a tough job to get done," she said.
"A running back has strength and perseverance, doing whatever is asked of them or needed by them - and then, they
do and give a little bit more than what is asked or needed. A good running back moves through obstacles and doesn't
give up."
I told her that the gift of her analogy was as meaningful to me as the gift of this treasured jersey. And
she responded, "You are worth it, my friend."
"Wow! And thank you!
I would never have considered myself a "running back" type of person, especially paired with my own welcome mat metaphor. But it fits so well with how I want to be
known and remembered, and with how I choose to live and be, and touch others and the world in so many moments at
hand. I seek to help others know they are worthy, and that life is worthy, even as the mosaic of our world seems to
be shattering around us, or within us.
And this week, I am reminded that what I do, and who I am, matters, and makes
a difference in some way. How I have endeavored to reach out to others and touch the world, indeed has something to
do with how others have reached back to me. And, I am grateful.
I like the idea of being known, and one day
remembered, as a welcome mat, who - like a running back - lives and plays and serves and prays with resolve. That's
a pretty noble reputation, and legacy.
"Today, Week Thirteen begins, with 10 days until Thanksgiving. I can't say
that I am always successful in my efforts, and I know that I sometimes get frustrated - especially when I don't
live up to my own expectations for what I think I should be doing or being. But I can say that in most moments at
hand, I really try very hard to live and be as I want to be known and remembered. And this week will be no
different. I will choose to embrace attitudes and offer actions that express my purpose in a meaningful way, as I
move forthward - serving God, and welcoming and nurturing others, with the strength of determination."
Jeni (Mattie's mom / Mama Peace).
Sorry for the formatting of that last one. Not sure what happened there. anyway, her note from week 13 will be posted as soon as I fetch it from FB later. Happy Thanksgiving to those who celebrate, and i'm sure she's doing just that today along with the rest of us. *smiles*
There will be a Thanksgiving day post after this one from her, but for now, here are her reflections on week 13.
End of Week Thirteen Note –
“Remember to play after every storm!” -- Mattie J.T. Stepanek.
"Celebrate life, every day, in some way –
with choice, with purpose, with gratitude!”
-- Jeni Stepanek.
"Life is worthy. But life can be tough, for anyone, in so many ways.
For me, just getting out of bed each morning can be a challenge.
"There have long been physical challenges related to neuromuscular disease – such as figuring out how to move my body and roll and transfer from bed to wheelchair, using whatever muscles are not yet as weakened as most other muscles, and doing so with the least amount of discomfort and pain and fatigue as I start a new day.
"There have long been logistic challenges related to medical needs – such as unplugging and coiling charger cords for the wheelchair and ventilator batteries and other blessings of technology, switching from the nighttime vent to the daytime vent, filling portable oxygen tanks so I am not tethered to the large stationary tank, and other health-related tasks that need to be tended to on at least a daily basis.
"There have long been emotional challenges related to grief and loss – such as waking each morning and considering the day at hand, knowing that my four children will not be tangibly present with me, again, and wishing that I could be tending to their physical and logistic and emotional needs as I move through yet another day, beyond them. "And there have also been emotional challenges related to unwanted memories that rise up even years or decades later, and trigger horrible stuff inside. It is amazing, and unfortunate, how traumatic truths never really go away, even if they are carefully packed away into some dark and distant corner of the mind.
"And more recently, there have been new physical and logistic and emotional challenges – such as those related to surgery and chemotherapy and radiation and all the ongoing after-impact of cancer and treatments, and all the future-impact unknowns of treatments, or cancer.
"Some folks might wonder why I would bother getting out of bed at all. In fact, when sharing presentations, I am usually asked by audience members “how and why” I do find reason to get up each morning and embrace a new day, knowing it will begin with, and then be filled with, and also close with so many challenges.
"I have to admit that there are a few mornings when I wonder the same thing myself. But the truth is that ultimately, I realize that in spite of the physical, logistic, and many emotional challenges I will inevitably face in any day, I won't likely be facing spiritual challenges, because of how I choose to embrace and move through (most of) my days.
"Believe it or not, I honestly wake up with the words “thank You” on my breath, as I realize I still have the breath and beating heart to offer these words into a new day.
"I may be a middle-aged woman who has a scale-tipping amount of life-limiting conditions and challenges to balance, but I know for sure that I am also a person who is truly excited about considering what I want to be when I grow up, and as I countdown the days until I am 83. And while I may not always be at peace with the personal or global details of any given day, I am deeply grateful to be alive, and grateful that “I am who and how I am,” and that “I am where I am.” I realize that as challenging as things are for me, I am, in many of my challenges, facing what can be referred to as “first world problems.”
"As a woman of deep faith, I am a believer in Good, and in the Potential for Good to genuinely grow within or from any reality. So I would say the real question for me is not so much “why” I have and will choose to welcome each new day, but rather, “how” I have and will handle the various challenges – especially the emotional ones which weigh so heavily on the heart and mind, and which can drag down the body as well.
"Responding to the physical and logistic challenges is actually a simpler task than handling the emotional challenges – though the “how-to list” keeps changing as medical conditions progress, and in-place-accommodations need new types of accommodations. It is frustrating to have the norms ever-shifting, which necessitates ever-re-adapting to just about everything. But it is generally do-able, especially when working well with others (or when breaking down and letting others work with me), and when positivity and creativity are a way of thinking and doing.
"There are many answers for “how” I move through the emotional challenges, but the “how” of one morning may not be the “how” of any other morning.
"One way I move into each day is by choosing to do so with a sense of purpose – or “real'izing my Heartsong” as Mattie would say. He reminded us that what we need or want most, we understand why that matters in life, and that is what we have within us to offer to others. He suggested sharing this essence through our talents or hobbies or gifts, or whatever comes natural to us, and he assured us that as we have heard before, “in giving, we do receive, and our Heartsong, our unique purpose, is realized and celebrated.”
"As silly as it may sound, what matters most to me is simply “to matter” – not for what I say or do or accomplish (or not), but because I exist, and am a person created with a purpose. So on most mornings, I offer a prayer that through my choices in word and action, I am able to help at least one person realize, “You matter!” during that day. I pray to celebrate my Heartsong by helping others realize and celebrate their own Potential, and Good reason for being.
"On some really tough mornings though, it is not that easy to just choose “to celebrate my ‘you matter’ Heartsong” – especially when I am having a hard time with missing my children, and I am desperately longing to hold and nurture them and be their Mommy. When I struggle with that, I try to consider what it is I am missing most about them in that moment, and what I would say or do to nurture them. And then, I say a prayer that I am able to somehow choose to offer whatever the essence of that longing is, to someone who is in need of just that essence. I may not be “celebrating” my Heartsong, but I am passing through moments with purpose, which is Good.
"But, of course, there are still days – rare ones, but intense ones – when I can't even figure that out. When I don't know (or am hurting so badly that I don't care) what it is I am missing or wanting or needing most, and when I cannot consider or pray on what I might have to offer to anyone else. On those days, I have learned to somehow allow someone else to give me purpose, by wanting or needing something that I might say, or do, or give, or be.
"Unlike the mornings when I pray to reflect God’s presence among us, and to share or serve some purpose with or for others, I have never actually prayed for someone to give me “reason for being.” On these darker mornings, my prayers aren't really “for” anything, but rather, more of a wordless sighing, or deeper sounds, without any aim or intent except to express or release misery. One might wonder if such noises are even prayers at all, but I would say they must be, because somehow, purpose becomes realized as time moves on, and I find myself doing what someone else needs or wants, and as I see that Good and the Potential for Good have genuinely grown from or with others.
"And once I am up and rolling into the day – literally or figuratively – one moment unfolds into the next, and I find myself moving forthward, with choice, and with purpose, and with gratitude. And I am reminded – if I open my heart and mind – that life is worthy. It's not always easy to move forthward with choice, and with purpose, and with gratitude – but it is Good, and it shapes and creates Potential for Good.
"I have also found that having a personal mantra or motto (or “personal philosophy for life” as Mattie called it) helps keep the Good momentum, especially when old challenges keep stepping back in, or new ones begin interrupting the day.
"Mattie was 5 years old when he first shared his philosophy – “Remember to play after every storm!” He said “playing rejuvenates the spirit, and when we play well with others, we are creating mutual networks of support that will help us weather some next inevitable storm.”
"My own motto has long been – “Celebrate life, every day, in some way!" In recent years, I have added an addendum to this way of thinking and being, to clarify that what matters is celebrating "with choice, with purpose, and with gratitude!”
"I really like that the mottos that motivated Mattie and me are so similar in essence. We have both been inspired by the strength of resilience – with picking up broken and scattered pieces of what was, and somehow, choosing to access internal and/or external strengths, and try to re-shape any reality into something Good, or something with the Potential for Good. Like Mattie, I do not wear rose-colored glasses, nor am I clouded by denial or on a quest to reach some star that will always be just beyond my fingertips. Instead, like Mattie, I am rooted in hope, and energized by faith, and blessed with an amazing “mutual network of support” – which all nurtures resilience.
"One of my most favorite books of all times is “The Little Prince” by Antoine de Saint-Exupéry. I read this book at least once a year. Across the decades, I have read it in multiple languages so that I gather more and more essence of the things that really matter, and so I learn to understand more and more about looking at things “with the heart,” because so much is “invisible to the eye.” And a very exciting day for me as a parent was when I introduced this book to Mattie, who read it, and who like me, grasped and grew on the many, many Good messages of the story.
"During Afternoon Tea one day, when Mattie was facing some particularly intense challenges, we chatted about the “mysterious place, the land of tears” that is explored in The Little Prince. We talked about how we can’t choose our feelings, but we can shape our attitudes – how it is okay to acknowledge challenges, and express sadness, or frustration, but it also matters why and how we move forthward from such deserts – with choice, and with purpose, and with gratitude.
"Our conversation came to closure with a lovely realization – that a passage within these treasured pages offered the same essence of “playing after storms” and “celebrating life beyond challenges” as our own personal philosophical messages. We smiled, knowing and celebrating that as revealed in the book, stars in all corners of the Heavens may be filled with tears in any given moment, but they may also be filled with laughter. And through choice, despite challenges and sadness and frustrations, we may have “five hundred million little bells” in the stars, or “five hundred million springs of fresh water” that can nurture resilience, and Potential, and Good.
We chose to move forthward from this particular Afternoon Tea time with a tradition introduced to us by our friend, “Diane from Rhode Island” (yes, the same dear friend who reminded me recently that “a marsh doesn’t always stink”). Diane taught Mattie and me to “laugh into every corner” of our home – by choice, not by chance.
When laughing into the corners of our home and our lives, we were not laughing at misery, although sometimes, perhaps, we laughed even in misery, or with misery. And our laughter did not ever dilute the truth of our tears. Instead, our laughter joined the tears, in a network of support, so that when the tides shifted or the clouds lifted and we could “choose to inhale” and see and hear the stars more clearly, we had a sense of direction for how to pick up the pieces of “why” and “how” – and begin shaping “what next.”
"This week, I decided it was time to tend to my proverbial “house on the cliff” – and choose to laugh into every corner. Thanksgiving Day is just around one of those corners, and it is time to get my house in order. My cliff house may have decrepit floorboards and broken windows and loosed roof tiles from weathering so many life storms and from being stressed by so many daily physical and logistic and emotional challenges – but my cliff house is my home, and the foundation is spiritually strong, with Potential and Good, and it is time to make it welcoming and bright again – despite the darkness of daily challenges.
"It was not altogether easy to tend to such important matters this week, as I also dealt with the challenges of a nasty virus that necessitated some more-than-usual visits to medical offices for supportive treatment.
"But it was not altogether impossible to tend to such important matters this week, as I also had the privilege of trying hearing aids (aka “Mom-mom’s new ears” according to the grandkin) – which enabled me to hear more clearly the words and messages of those around me, and also to listen for and to the tears and laughter that are in the corners of so many homes and near-and-distant stars.
"Tomorrow, Week Fourteen begins, with 3 days until Thanksgiving. As I prepare to wrap-up these “Countdown to Thanksgiving – End of Week Notes,” I choose to move forthward, with this prayer:
“Bless this house, oh Lord, I pray, make it safe by night and day.” Whether I am on the edge of a crisis, or swamped by the grayness of a marsh, or wandering in the desert, or looking up at (or for) the stars – strengthen me, and my home, oh Lord, with resilience, and Goodness, and Potential, and purpose. Bless me with the ability to play after storms, and to celebrate life, and to seek or create or accept reasons to get out of bed each day, with choice, and purpose, and gratitude, so that I may real’ize – and even be the source of – more reasons to smile than to sigh at the close of each day. Life can be tough, for anyone, in so many ways, oh Lord – but, truly, life is worthy. Amen. And thank You."
Jeni (Mattie’s mom / Mama Peace).
I hope this will fit. Here is her last note:
Thanksgiving Day --- Final End of Week Note –
“One day, for all to know, our legacy will simply be
the shape of the life we leave behind, for eternity.”
Mattie J.T. Stepanek
Exactly 101 days ago, I made the decision to begin a “Countdown to
Thanksgiving.” It was back in August, and I was preparing to be “tattooed” for
radiation – something I was strangely “relieved” to be doing.
From the day I was diagnosed with cancer early in July, there have been many
doubts by many people (especially professionals) about whether my body could
handle any of the optimal treatments used to fight this nasty beast. Admittedly,
they were and are all very reasonable concerns, rooted in the facts of my
underlying and very rare and complicated medical conditions.
Because of my neuromuscular disease and medical issues, I actually had to
advocate for the opportunities to have surgery to remove cancer, and to have
chemotherapy and radiation as additional treatments to battle any lurking or
hidden cancer cells.
But – because of an amazing (and expert and enthusiastic and empathic and
extended) team of people, I have been provided with all of those opportunities.
And, I have been well-supported – medically, physically, logistically, emotionally,
and spiritually – through all the complications that have challenged me as a
result of my choice to take on these opportunities.
I am truly and deeply grateful – to each and every team member who has been
a part of this medical journey.
Cancer wasn't on my calendar. It was not on any of my many (many, many) To
Do Lists. Nor was it on my Bucket List. Cancer wasn't in any of my plans or
considerations or on any horizon in my mind. And yet... it happened anyway.
In general, while I am a “semi-public figure” because of recognition as “Mattie’s
mom” – I have always been a “pretty-private person” with respect to my own
disability and health situation, and with respect to my feelings and coping
strategies.
Yes, I am motivational speaker, and I present to diverse audiences of many
sizes, in many locations, on many topics. But what I share has mostly been my
children’s stories, and lessons I have learned from my children – especially
lessons learned from Mattie, who had the blessing of medical hindsight, and so,
the gift of living the most number of years, and who used those years wisely.
Mattie didn’t live a long life, but he lived a life of depth, and has left behind an
amazing legacy, that continues to inspire people to embrace hope, and to seek
or create peace.
When I was diagnosed with neuromuscular disease a couple of decades ago,
there were no widely popular “social media” outlets like Facebook and Twitter.
There weren’t really that many “websites” back then, as the Internet was just
becoming a word that folks even had a clue about, and most folks were not
even “connected” yet. So I was able to generally keep my thoughts (and facts
and feelings) to myself, even as Mattie and his story became more and more
widely known around the world.
When I was diagnosed with cancer this past summer, everything was quite
different. Millions of folks are now relying on the Internet for information, and
inspiration, and socialization, and more. Very quickly, I began seeing posts and
questions (and guesswork) here and there on social media sites, and I began
receiving numerous e-mail messages – all with reference to or concerns about
my health status. And not everything I was seeing was accurate with respect to
facts, or my feelings.
So, I decided to “take the reins” so to say. I made the choice to share
information, yes, in a highly public way – via social media and Mattie’s website
– but also in a very careful way.
I decided that if I posted “updates” of some sort on a regular basis, I could keep
caring and/or curious folks informed – sharing what facts I felt comfortable
sharing, which would keep any information “out there” accurate, and
“relevance-limited.”
I also hoped that in taking this public-posting chance, I could help shape “how”
folks moved through this journey, by rooting each update in some “philosophical
musing” that ordinarily would only be noted in my private journals. I wanted
folks – both the caring and the curious – to move along the journey in a way
that mattered to me, and was perhaps meaningful to them.
During July and early August, I posted a few simple and factual updates, and
shared how I was feeling and made a request for prayers and positive thoughts
– from folks across any faith.
But as I entered the “harsh treatment” phase of weekly chemo with concurrent
daily radiation, I needed something else – some goal of sorts – on which to set
my vision, and my heart and mind, and my spirit. From that reality, my “End of
Week Note” series began, and evolved, and has now moved us through those
101 days, and into Thanksgiving Day itself.
One hundred and one days ago, I didn’t know quite where or how (or if) I would
be on Thanksgiving Day. But I needed to somehow mark “time passing” in a
meaningful way, which is a part of “moving forthward” -- with choice.
As it turns out, writing these Notes became somewhat of a therapeutic process
for me. Choosing each word, and collectively shaping them into a clear message
offering both information and inspiration – gave me clarity, and focus, and
reasons to embrace “what next.”
There were a few very challenging weeks we moved through, when I didn’t
quite know what or how (or why) to write. But choosing to continue with a goal
I set – the Countdown to Thanksgiving and a weekly posting of some sort for
those who were appreciating my Notes – gave me a purpose, even if the only
purpose I felt when considering some first word was to simply fulfill a goal I set.
But a first word would somehow lead to a second word, and then a hundred (or
thousand more) would follow, and a message would form – and as a result, I
would have a deeper and clearer purpose for closing one week, and moving
forthward into the next.
And then, as days would pass, I would read the responses to my Notes that
people would post as comments on Facebook, or send in e-mails and snail mail
letters. And I realized that people were not just “caring and/or curious,” but
they were also choosing to reflect on the messages I was sharing, and respond
to them – even sharing my Notes with others at home and at work, and in
schools and places of worship, and more. And my sense of purpose became
amplified. Something I set out to do for others, circled back and became a
source of hope – for me.
I am truly and deeply grateful – to each and every team member who has been
a part of this social media journey.
Today, the Countdown to Thanksgiving concludes. If I could, I would list every
single person and group and shout “Thank YOU!” to each of them – for whatever
their roles were (and are) in this difficult, but oh so worthy journey.
That is not possible, and I don’t even know all the names of all the people who
have been involved in some way along this journey. But there are a few folks I
would like to acknowledge with public gratitude here in this final “End of Week
Note” (many more are folks are “credited and cheered” in the “On Giving and
Thanks” Countdown to Thanksgiving video that is a celebration of this journey,
and a part of this closing post).
First, there is “Team Jeni” – those folks who chose to drive me (again and again
and again) to so many medical appointments, and who have chosen to do so
many behind the scenes tasks. In the video, many of these “again and again
and again” folks are listed, but I would like to offer a special thank you to my
“Coordinator Extraordinaire” – Ann Staal. She not only organized all the daily
travel logistics for me (week after week), but also picked up any unfilled driving
shifts herself (and kept me supplied with lemon Italian ices when my stomach
tolerated nothing else, and with avocadoes and dark chocolate – cause they are
high in magnesium… and I love them). And there is Diane Tresca who came
from Rhode Island again and again and again to help me (and keep me
laughing), and Josephine Palermino and Annie Tresca who gave a week of their
time and “moved in” (literally) to help during the post-surgery days.
There is “Team Inspiration” – those folks who chose to celebrate hope and
engage in prayer and participate in more such wonderful activities that made
such a difference to me, and to others following this journey. Many of you have
appreciated Lisa Bachman’s daily “Mattie quotes” – she began the Countdown to
Thanksgiving way back when we were still 100 days out. Somehow, whatever
she chose to post each day, was exactly what I needed hear from my son on
that day. Amazing… grace! And there are others like Terry Carter Lloyd who
shared daily prayers, and Gaithersburg Presbyterian Church and St. Francis of
Assisi Catholic Church members who gave of their time and hearts so often, and
the Hemelgarn family who sent so many inspirational and downright funny cards
(and who should have taken out stock in Hallmark), and my “AML” and the
cousins, and my colleagues (aka friends) at the University of Maryland (Paula –
thank you!), and Mattie’s Boys and all the fire fighters, and Mattie’s Peace Club
families and schools, and my WAFF family and all the 3DD global teens, and so
many more – all of whom somehow helped me smile, and remain rooted in
hope, during this very challenging journey.
There is “Team Medical” – those folks who made the choice to provide me with
the best possible health care and treatment options available. I call them “Team
Amazing”– and I doubt there is a better team out there, anywhere. (And I know
that no other team has a personal “Noosa Fairy” on board – watch the video).
Each of my doctors made the deliberate choice to take me on as a patient –
knowing I came with many risks and complications. But they each made the
choice – enthusiastically – and they never looked back, and they were creative
and caring and, well, they were (and are) “amazing.” My amazing doctors and a
few nurses are celebrated (in both name and photo) in the video I have created,
but there are many, many more members of “Team Medical” who are not named
– but who have been equally essential and amazing. They are the “unsung
heroes” – from nurses (like Agnes, Elena, and Kristin) to technicians to
receptionists and transcriptionists and more – who do so much work, both
“bedside” and “behind the scenes” – and who are often under-recognized (but
never under-appreciated by me) for their valuable contributions. A special shout
out to everyone at Maryland Oncology Hematology in Wheaton, MD, and to
everyone at Holy Cross Hospital Radiation Treatment Center – thank you!
There is “Team Heaven” – my four children – Katie, Stevie, Jamie, and Mattie –
who I know prayed for me and were with me during this journey, and the saints
I chose to pray to with special intentions during this journey (André, Francis,
Jude, Peregrine, and Rita), and our dear friend Nell Jennings Cox Paul (aka
“Duck on the Head”), who left us during September, but who will never be
forgotten, (and who will always come to mind when I see a squirrel, knowing “it
might be Jesus”).
And finally, there is “Team Step’obbi’comb’ake’r’oss” – my kin-family, merged
with members bearing surnames like Stepanek, Dobbins, Newcomb, Baker,
Proctor, and Gross, and bonded by choice and love and purpose and life (and a
wicked yet amusing sense of humor). “Thank you” is just not a big enough or
deep enough word, but for the lack of something better, I say “thank you,” and I
love you, and I am grateful – to each of you, for everything.
Team Step’obbi’comb’ake’r’oss – we rock, we roll, we really really fun(ny).
So… here we are, on Thanksgiving Day, and this countdown is about to
conclude. Where do we go from here? Well, I can really only answer for sure, for
myself. But I encourage each person who has been a part of this journey, in any
way, on any day, to move forthward as I plan to do. “Moving forthward” is a
Mattie phrase, that brings choice into any “what next” moment.
We don’t have to happen into the future just because time passes. Instead, we
can embrace and help shape the future as time passes.
We cannot control the “facts” of any particular moment in time, and we cannot
change our “feelings” related to any particular fact, or moment in time. But we
can choose how we reflect the truth of any fact or any moment or any feeling.
We do have a choice in how we respond to any truth, through our thoughts and
words and actions – which will somehow, touch at least one other person, in
some other moment, in some way. In any moment, we have the opportunity to
give shape to our legacy, which Mattie reminded us will “one day…. be the shape
of the life we leave behind, for eternity.”
In his final speech, offered during the 2004 Heartsongs Gala, Mattie shared the
following message:
"This moment, this event, this day, will end. But, we know that other moments,
other events, other days, will unfold with more opportunities to do good and to
celebrate. And while those days and opportunities can never look the same as
this one, nor should they, they can still be as wonderful if we remember ... what
it means to be a champion and remember that these moments are not about
any one person. They're about doing what's right and meeting the needs of any
other person." – Mattie J.T. Stepanek (excerpt from “Messenger: The Legacy of
Mattie J.T. Stepanek and Heartsongs” by Jeni Stepanek).
Indeed, life is not about any particular moment – tragic or triumphant, nor is it
about any particular person – famous or faceless. Life is about every person,
and every moment – past, present, and future. And life is about choosing to do
what we can, when we can, with what we have, and it is about choosing to do
what is right and good – especially for any other moment and any other person,
simply because we can.
I am truly and deeply grateful – to each and every team member who will
choose to move forthward from this journey, doing what is right and good, for
themselves, and for others, and for our world, in any moment.
As for me, I am moving forthward with hope, and peace, and purpose – and
with a new goal and countdown. When I grow up, I want to be 83, and a beach
chair philosopher. I want to wear tie dye clothing and hippie sandals and
celebrate with the purples of hope and the greens of life and the earth-and-skin
tones of peace, and I want to have a party with so many, many friends (and
celebrate extra if we all still recognize each other) and toast to life – with
gratitude!
And good news – as of today, there are only 9,738 days until I am 83, and I
believe that I am well on my way to becoming that beach chair philosopher. I
have created my Bucket List, and plan to check off at least one of my ten items
as I journey on, moving forthward.
I hope you all take a few minutes (well, 7 minutes and 8 seconds actually) to
enjoy the video I have created as an expression of my gratitude.
(https://youtu.be/ftyH4W2S6bc). It summarizes this journey through treatment
for cancer and our Countdown to Thanksgiving – with words and photos of
inspiration, and with rolling credits acknowledging so many team members. And
yes, also with bits of that wicked sense of humor that keeps the
Step’obbi’comb’ake’r’oss Fam moving forthward, as we choose to balance a
whole bunch of burdens into a whole bunch of blessings, and somehow –
“Remember to play after every storm!” and then “Celebrate life, every day, in
some way – with choice, with purpose, and with gratitude!”
Jeni (Mattie’s mom / Mama Peace).
There is no dialog during the video, just music. However, her brief, kind-of vague description is enough to give me a general idea of what it's about.
Update since Thanksgiving:
According to a status from her on facebook, She was aditted to the hospital for soe things related to the cancer treatments. Surgery could possibly need to be done, but doctors are reluctant to do it because of how recently the treatments had ended. She will post a note with more details this weekend, so I will get more iformation on this atter when I see that, and will put it up here for everyone. She is doing much better and not dealing with as much pain now since they had to drain some fluids.
M key appears to be misbehaving. grrr.
Update – December 22, 2015 –
"For several months, I counted down the days until Thanksgiving with weekly posts on Mattie’s and my Facebook pages.
"Throughout the countdown, I prayed and meditated, and I mused and reflected, and I hoped ... and I waited…
"I waited, as we moved closer and closer to the time when I could say “treatment for cancer is over!”
"And then, Thanksgiving Day arrived.
It came.
"And it went.
"And it was a wonderful celebration of gratitude, with family and friends.
"Thank you to all who watched my Countdown to Thanksgiving video and shared nifty comments – you truly made me smile.
"I mentioned in the video that once Thanksgiving arrived, we would be waiting, with hope, to “Welcome, Ned!” (with “cake, please!” of course). Yes, as a family, we have personified the "No Evidence of Disease" seen at this time statement.
"No doctor will be able to say for sure that I no longer have cancer, but the hope is that a few scans can be performed, and someone can say that where they are looking, they are not seeing evidence of cancer or disease – which is referred to as "NED."
"For the months leading up to Thanksgiving, I had it in my head that concurrent with treatment ending, I would be given information about NED – either that I could move forward with planning his welcome party, or that decisions would need to be made about how to deal with what I began referring to as “ED” (or – more “evidence of disease”).
"Just before Thanksgiving, I learned that I would actually be waiting a quite a bit longer than I thought for information about Ned – meaning I won’t begin to know anything until sometime next spring. I was told that I would likely have “abnormal test results” if scans were done too close to treatment – which could be confusing and frustrating, as it would be unclear if the abnormalities were due to disease, or due to the harsh impact of chemo and radiation. I was told that testing and scans wouldn’t take place until next year.
"Hearing this was a shock to me, and a disappointment that rattled my foundation a bit. I had been counting down those days until Thanksgiving – yes, to the time “when treatment would be over,” but also, to the time when for whatever reason, I assumed I would be given information (backed up by scientific data) about my “what next?”
"In other words, in my head and heart, I was already preparing a “Welcome, Ned” party.
"A bottle of Cabernet had been purchased. A chocolate cake had been planned. And the best December weekend to host my commencement beyond both treatment and cancer was being considered.
"Instead, as Thanksgiving Day came and went, even with the flurry of celebrating the “end of treatment,” I found myself back to a period of “waiting.”
"And to make things more challenging, I also found myself dealing with both ongoing and newly evolving complications from all the treatment, although all chemo and radiation had in fact concluded. I even ended up back in the hospital for a bit to deal with a pretty painful intestinal blockage, likely due to complications from treatment. I have been told that “short of a miracle,” this blockage will inevitably require surgery. But like any scans to consider NED’s whereabouts, surgery should not be done at this time as my body is still under the impact of treatment, which makes surgery risky and healing complicated.
"So, I am waiting for NED.
"And, I am waiting for the possibility of more surgery to resolve yet another issue.
"And, I am waiting for my mind to stop spinning with all this information, and with all this lack of information.
"I wait with anticipation, and also with a bit of angst.
Ironically, this new round of waiting began as the spiritual season of Advent settled in.
"In general, "advent" means the arrival or emergence of a notable or worthy person, thing, or event.
"For Christians, Advent is the first season of the church calendar – the four Sundays and weeks leading up to Christmas Day, when we commemorate the birth of Jesus.
"Many folks think of the season of Advent as a time of “waiting.” And in many ways, it is.
"We wait, expectantly, to celebrate this person and event – which symbolizes something notable and worthy – the great gift of hope, and ultimately, the blessing of salvation.
"But Advent, and “waiting” for someone or something notable can also be more than just a time of anticipation, or angst. Advent and waiting can be embraced as a time of preparation – mental, physical, and/or spiritual – so that we are truly ready for a worthy celebration or commemoration of whatever it is for which we are waiting.
"When we focus our hearts and minds on preparation during times of waiting, we are more likely to remember why this person or thing or event is so important to us. In doing so, the reason for the moment or season we are awaiting can last long beyond any particular moment or season. It can become a blessing that moves us forthward through many more moments – of both anticipation and angst.
"And, if we open and minds and hearts during preparation, we are more likely to be ready for whatever arrives as our “what next?” – especially if what we are awaiting (with anticipation, or angst) arrives differently than imagined, or planned for, or hoped for.
"From infants to ancients, we all wait – some with anticipation or angst, and some with amusement or anger, and some with alienation or aplomb.
"Babies wait for the bottle. Children wait for their birthdays. Teens wait for their driver's license. Adults wait for retirement. The elderly wait for more than we might realize, or sometimes acknowledge.
"We wait for this moment to commence and for that moment to conclude, and we wait for this person to arrive and for that person to pass.
"We wait for some forecasted storm to begin, and we wait for some lingering storm to finally end – so that we can “remember to play” – at last – or at least begin picking up the pieces of what was and what is, so that we can consider how we will shape what next.
"We wait for our dreams to come true, and for our desires to be fulfilled, and for our destinies to unfold.
"Christians, Jews, Muslims, and folks of other diverse religious or spiritual traditions – we all wait – for salvation, whether by grace or by works – or both.
"Yes, from infants to ancients, we all wait – for someone, or something, or sometime.
"And while waiting may well seem like a delay, it is also a blessed gift – of time. And we can choose to use this blessing of time to serve as a gift to others, even as we continue waiting on our own dreams and desires and destinies. We can choose to be a source of hope, through grace and through works – or both – for others.
"As I move through these final days of Advent, and into and through the coming months that will involve much waiting, I pray that I am able to set my heart and mind on preparation, so that I am ready for now, and for what next.
"I will try to remember that waiting is not just about preparing for what I hope to receive (i.e., a new companion called Ned, a miracle to avoid surgery, the gift of hope and salvation that grows from Christmas).
"I will try to remember that waiting is also about preparing for what I can give others through my gift of time, and from whatever it is for which I am waiting (i.e., hope, hope, and more hope).
"And, I will try to remember that waiting for the advent of someone or something notable is about preparing to truly celebrate and meaningfully commemorate what is truly worthy about those people and things and events for which we spend time waiting.
"I will anticipate (even if with bits of angst) that Ned is simply having some visa and passport issues, but will get clearance to arrive sometime this spring.
"I will believe that miracles do happen, and surgery may not be inevitable after all.
"And I will wait these final few days for Christmas – with the spirit of hope that is indeed the reason for the season, and which can carry me through moments well beyond the holiday as it is denoted on a calendar.
"I will pray sincerely to be for others, the source of the very type of blessings I seek and await for myself."
Moving forthward, even while waiting,
Jeni (“Mattie’s mom” / “Mama Peace”).
"PS – Thank you to my family for the stuffed “Ned” giraffe on Thanksgiving Day – a perfect and nifty gifty that turned my spirit around when I was feeling a bit bummed about “waiting” longer than anticipated.
"PPS – Thank you to Max for the “Ned Flanders” Lego toy that arrived while I was back in the hospital – another perfect and nifty gifty that turned my spirit around, again, when I was feeling a bit bummed about even more “waiting” issues.
"PPPS – A poem by Mattie, that fits this theme of “waiting” during anytime of the year, and for any notable or worthy person, thing, or event."
"Blessing Lesson
"Blessings ground us
When our dreams
Dawn with our destiny.
Blessings guide us
When our destiny
Dances with our desires.
Blessings grace us
When our desires
Duplicate our devotion.
Let us pray, then,
That our blessings grow
Into echoes that energize
Our earthly lives,
Daring us to be grounded
In our dreams,
In our destiny,
In our desires,
Granting us and
Guiding us as we
Grow in our devotion
Of what really matters
For living,
For love, and
For Life."
Mattie J.T. Stepanek
August 17, 2003
In Reflections of a Peacemaker (AMP, 2005)
Jeni was feeling so ill over the holidays that she was only able to be out of bed for an hour on Christmas Day. but she seems to be doing better. Her response to me directly when I asked her how she was feeling was, "This is a tough jjourney. thank you for prayers."
Actually, she's inspiring me. I'm actually thinking of doing a blog, when I have a working computer.
I have a goal to inspire others. I know that sounds kind of lame. But, that's how I feel. It's why I tell doctor jokes to doctors. And why I make light of some things, that others thank are the end of the world to them.
Blessings,
Sarah
no, not lame at all. jeni and her son's intertwined messages of hope, peace and celebrating life each and every day with purpose, and using prayer and emotional support from so many other people in life to get through the, "storms," has inspired me. I am one of the many taking Mattie's message, "forthward." I also take it upon myself to share jeni's message or at least recommend her book to people who are willing to listen. I don't just tell people about her, I show my enthusiasm through my actions, determination and the will to live my life, (separate from my parents, but yes, they are part of it from a distance), as fully as possible.
She is in the hospital dealing with pain related to the intestinal blockage I mentioned earlier, but doing okay. Doctors are still determining what to do next for this problem.
I'm so sorry, but I'm sure she really appreciates your support and kind words. This has got to be hard for her, and hard for you. It's tough when your hands are tied. Every little bit that you're doing is helping, though.
Apparently, surgery is in the near future for her. She is still in hospital, but continues to live with purpose.
She doesn't give up. That's what I respect about her.
Blessings,
Sarah
Nope, she certainly doesn't.
she went in for surgery yesterday because it was decided there was more risk in waiting. I have no word yet on how she is doing from either anyone on her faceBook feed or herself. I will keep you all posted when I do hear something about her postoperative condition.
So this was posted on her behalf today. I have been waiting on pins and needles to see how she is:
"Hello Jeni's FB Friends,
"Jeni had the needed surgery on Tuesday. The surgeon was successful in one area that was causing problems but another area was too damaged by radiation to even attempt to fix it. Only time will tell if this situation is going to improve, stay the same, or continue to get worse. there have been some complications since surgery and she is still in the ICU, but she said to tell folks, "I am doing great considering all the challenges," of both her underlying neuromuscular disease and the cancer treatments. She is in good hands, receiving great care from everyone on her medical team and family. Ongoing prayers and positive thoughts are always appreciated as she still has a long and difficult road in this journey. But she is accepting the challenge with hope and faith, and a positive attitude."
Sounds good! I still say she's one strong lady!
Blessings,
Sarah
from her hospital bed, she was able to participate in the 2016 Just Peace summit, thanks to some cool technology. she looks forward to being able to return home later in the week.
after a week-long stay at home, she went back into the hospital. I don't know all the details yet, but she has been in there for a little over a week now. She will post an update later this week, which I will put here when I see it.
2016 0408 – Update & Prayer Request from Jeni
A lengthy read, but hoping it is worth the time, and the prayers.
"After Mattie died back in 2004, I knew that one day I would write his memoir.
It took me a few years to decide “how” to share his story – where to begin,
what to include, why each chapter would matter, etc. Most of all, I had to decide
how to move “forthward” beyond his lifespan, and bring readers to an
inspirational (and personal) “what next” point that accurately reflected and gave
meaning to the echo and silhouette of his existence.
"When I penned “Messenger: The Legacy of Mattie J.T. Stepanek and
Heartsongs” a few years later, I chose to begin the journey with the most
challenging and obvious truth of his life – that he died. And yes, he died young.
In doing so, I could then tend to the most important and worthy truth of his
journey – that he LIVED. And wow, he lived fully!
"What Mattie lacked in length of living, he made up for with depth of living. He
celebrated each day with hope and peace, and he moved through and beyond
each moment with choice and purpose.
Mattie shaped how he wanted to be known, and remembered, through his every
day words and actions. Whether he was preparing for a presentation or
publication that could reach countless individuals, or simply having a
conversation or cup of tea with one other person, he tried to choose to make
each moment something that was worthy – not only for himself, but also for
others, and for the future.
Today, nearly a dozen years after his passing, Mattie continues to inspire folks
across diverse generations and locations and aspirations and inclinations. His
essence reminds us to “Remember to play after every storm!” and to consider
“the things that really matter” for being, and for having been.
And that is something each of us can choose to do, and to be.
Regardless of the unique details of our life stories, or the tragic or triumphant or
trivial pathways that map our journey, we can each choose to shape the content
of our pages. As I have said many times before, we cannot always choose our
realities – what happens to us or around us or to those we love and care for –
but we can choose how we respond to any truth, and how we reach out to
others, or into the future or even into the very next moment that grows from
any reality.
"Across the past couple of weeks, I have been grappling with how I can
embrace this approach to moving forthward through some very difficult truths
and times, and how I could shape these truths and times into an accurate yet
optimistic update, as I share the facts of my journey and also create the
“ambience” for how to brace for the journey.
"As I did with Mattie’s memoir, I have decided that the best way to begin my
personal update is with the challenging truth of my life at this time – that I need
a miracle. In doing so, I can tend to the worthy truth of life in general – that
miracles are real, and that regardless of length of living we can choose to give
depth to living, as we balance realities and even seek new heights.
Miracles are a part of every day life – if we choose to notice them as they occur
all around us. And personal miracles do happen for every day people.
Sometimes they unfold almost exactly as we desperately pray for them. And
other times, miracles are revealed in unexpected or alternate ways – if we
choose to accept them as they are gifted to us.
"Still, it never hurts to pray with specificity, and to invite others to pray in
communion for an intention. And so, I will share some of the details of my
current life chapter, and extend an invitation for your prayers and positive
thoughts.
"Last summer and fall, I shared chapters of my journey into the world of cancer,
and along pathways that involved the challenges of surgery and chemotherapy
and radiation treatments. Elements of previous life chapters were woven into
those reflections, as it became impossible to separate the physical and
emotional complications that were rooted in my decades of “surviving and
thriving” with a progressive and life-limiting neuromuscular disease that had
already taken the lives of all four of my children.
(Note to folks who are new to this journey – before any judgmental thoughts
begin to form: I was not diagnosed with this extremely rare condition until after
the births of all four of my children, and so, I unknowingly passed an even more
progressive mutation of the disease on to each of them).
"During “weekly updates,” readers were introduced to my “house on a cliff” and
other analogies as I shared and compared building and maintenance passages –
those reality blueprints, carefully chosen and crafted and strengthened with
both laughter and tears, across so many years, in response to a long-term
chronically life-threatening condition… and then the unanticipated improvisation
plans and patchwork adjustments when the mega-storm of a catastrophic
condition disrupted everything from the floorboards to the rafters – but not the
foundation of this place I call home.
"In those notes, I also shared bits of Mattie’s wit and wisdom that inspired me
to wake and close each day with purpose, and with gratitude. I offered “glass
half full” and “choose to inhale” and “if you have enough breath” and so many
more philosophical insights that became tangible templates for embracing hope
and peace, even amid many, many, many challenges. And together, we counted
down the days until Thanksgiving – when treatment for cancer would be
complete.
"My hope was that shortly after Thanksgiving, I would be hosting a “NED Party”
to thank folks who had been a part of a challenging chunk of my life, whether
by choice or by chance. Together, we would celebrate a new and most welcome
“friend” whom we had dubbed “Ned” – which stands for “No Evidence of
Disease” – the term often used as someone successfully moves beyond a cancer
chapter.
I looked forward to a spread of “potato salad and cake and all sorts of giraffes”
(yes, insert laughter here, as these are dark-humor foods in our family, and our
personification of the Ned-entity), along with other comforts and dishes and
toasts toward a future without daily or weekly trips to medical facilities, and
devoid of central lines and I.V. infusions and other medical this-and-thats which
are a part of actively battling cancer.
"Instead, throughout the winter and into early spring, I shared occasional
photos of time passing – sunrises and sunsets and other sky-scenes that
captured the views from my various hospital rooms, each accompanied by posts
that offered updates on what was becoming an ongoing and complicated
medical journey.
The condensed version of those “after Thanksgiving happened months” is this:
it seems (at this time) that I may have successfully battled an aggressive and
invasive cancer, but the combined modality treatments that were necessary to
fight this fiendish reality have led to a rare but known-potential consequence,
which is equally aggressive and invasive – and is generally known to be
progressive and incurable, and offers a very poor prognosis.
"I have ended up with a series of “known to be possible” and “rare but
potential” side effects and adverse reactions to each treatment, and the
combination has not ended up with a good outcome.
Major abdominal and pelvic surgery needed to remove my cancer resulted in
adhesions.
"Platinum-based chemotherapy needed to shrink any tumors and guide the
impact of radiation aggravated my neuromuscular disease, and resulted in many
challenges that have impacted my kidneys, my heart, my skeletal muscles, my
hearing, my digestive system, and my overall autonomic functioning.
Radiation therapy needed to eradicate any lingering “lympho-vascular system
invasion positive” cancer cells in my body resulted in both acute and chronic
radiation enteritis. The former of these conditions (acute) is a common and
treatable side effect during and immediately after radiation therapy. The latter
condition (chronic) is rare, progressive, and incurable, and occurs sometime in
the months (or even years) after radiation therapy has ended.
"In December, it became clear that the adhesions had resulted in an intestinal
blockage. We tried to wait on the needed surgery to address the issue, because
the risks of poor healing are quite high during the first six months after
radiation. During January and February, the blockage(s) were becoming worse
and interfering with eating, and resulting in progressive malnutrition. This was
complicated by the fact that my underlying conditions are known to have poor
compatibility issues with “TPN” (or total artificial I.V. nutrition), and thus could
become another risky potential for more adverse complications. I was not up for
chancing that added adventure.
"By the beginning of March, surgery was inevitable, and my medical team was
able to remove a number of nasty adhesions, and to “un-kink and un-knuckle” a
portion of of my intestine that was causing severe problems.
But they also were able to see that parts of my digestive system were
permanently and negatively impacted by treatment for cancer, the worst of
which being that well more than half of the small intestine was already scarred,
from a rather rapid transition from radiation enteritis damage to a progressive
disease process. I was told that rather than looking like the world’s longest
string of sausages, my small intestines looked like the world’s longest string of
pearls, with scar after scar after scar.
There was too much damage to safely risk removing the impacted intestine and
attempting to “re-section” the remaining bit to un-impacted intestine. Pretty
much “the small intestine” in total was deemed “impacted.” At best, I might
have close to a third that could have been left intact and that was not yet
scarred – but that third or so would still eventually scar, and the odds of a
complicated (even devastating) recovery were very high.
"Now, we are approaching mid-April, and I am home again from yet another
hospital stay. And as I said, I am in need of a miracle. Literally.
"Here is the amazing news though – step one of a potential miracle has been
approved and a potential life-prolonging (perhaps live-saving) treatment is
about to begin.
"For more than a decade, “hyperbaric oxygen therapy” (HBO2-T) has been used
by a variety of people, for a variety of situations, and with a variety of results. It
has been found to improve medical outcomes for some patients with particular
conditions or poorly healing wounds. It has been tried experimentally for other
conditions where no other treatment seems to make a notable difference. It has
even been used by some folks as a part of their preparation and conditioning
before they attempt to climb Mount Everest.
"Research indicates that for about 30 percent of patients like me who are facing
similar (though not identical) challenges related to progressive radiation
enteritis, HBO2-T has slowed the progression notably, and resulted in improved
outcomes and offered longer survival rates. I have been told that my situation is
rather advanced, and that there are no guarantees that HBO2-T will have a
positive impact on small intestine damage of this type.
"The very dedicated and amazing professionals on my medical team have mixed
opinions on whether the amount of time needed to try this treatment will
actually be beneficial and result in an improved outcome. But they all agree it
will not hurt anything, so there is no reason to not give it a try if I can be
accepted by a facility, and if I am willing to accept the hefty time commitment
that is required.
Hooray – I have just been approved to begin HBO2-T next week! And yes, I am
ready to put the needed and repeated chunks of time on my calendar.
"Beginning Monday, I will spend two hours, every weekday, for eight weeks, in
an “HBO2 chamber” receiving highly pressurized oxygen treatments. The
experience is likened to being taken down to a depth of 50+ feet below sea
level, with oxygen being pushed into the body at such a pressurized level that it
forces more saturated oxygen into the plasma portion of the blood, which can
result in the formation of new blood vessels, which may slow the progression of
a disease or injury, and even lead to healing in some situations.
"Yes, it is a lot of time that I am committing to something that has no guarantee
of changing the “what next” facts of my journey. But while time is indeed
precious, I also know that life is indeed worthy, even amid so many challenges,
and even with a life-clock audibly and palpably ticking as each moment arrives
and passes.
"And so, I am choosing to be “a deep sea diver” of sorts for a couple of months,
with the hope that it will support me in being “a mountain climber” of sorts as
well, for some more years. I am diving deep, and striving steep, in search of
that mountain top moment. And I am praying for a miracle that would give me
more time to continue what I am already doing – waking and closing and
choosing to live each day with purpose, and with gratitude.
Part 2:
"There are many ups and downs that will be a part of this chapter of my life
story, but I think they will all balance out – with choice and creativity.
"A few examples…
"Downside: I cannot use any hair spray or deodorant (or wear lotions or
powders or anything other than the scrubs they hand me each day) during
HBO2-T sessions – because oxygen this high and pressurized in a small
chamber can be both flammable and explosive. I tend to look like a sheepdog if
I don’t spray my hair back into some semblance of a style just after showering,
and I am realizing that these “no deodorant weeks” will coincide with the arrival
of warmer weather, as spring becomes summer.
"Upside: I will have so many extra after-shower minutes freed up for other nifty
things, and perhaps I will even figure out a nifty new carefree hairstyle. I was
planning on adding a few streaks of green and purple into my hair for the
summer this year anyway, so this just gets that fun and creative ball rolling.
And, I am actually an introvert at heart, so maybe the deodorant thing won’t be
so bad after all!
"Downside: Because of all the scarring and the current amount of intestinal
inflammation, I have to graze like a cow now for nutrition. I can only eat small
amounts of the foods listed on a restricted diet 6 to 8 times a day, rather than
enjoy full and satisfying meals. And every 2 to 4 days, I have to go without any
food or drink at all for a full day to "rest and decompress my gut."
"Upside: This eating pattern is like being in “appetizer heaven” – sampling food
options throughout the day. And a bit of beer or red wine is still on my approved
intake list, as is most seafood, (and my oncologist has promised to pick some
crabs for me this summer), so I am feeling pretty okay about this “down and
up” situation.
"Downside: I am literally “in a small enclosed chamber” (albeit with some see-
through areas on the sides and top) for 120 minutes a day, for a total of about
40 days across a couple of months. Enter the reality of claustrophobia, and the
realization of all the work I will not be able to accomplish and all my To Do List
items that will go Not Done for so long.
"Upside: There is a television mounted in viewing line from the chamber with
audio piped in to me. I can catch up on FORTY MOVIES from my ever-growing
(but never enough time for) To Watch List! And if this does have a positive
outcome, I will have plenty of time to reverse the Not Done (yet) status of so
many good things, on lists and in life.
"Downside: This is all a bit surreal, and overwhelming, and even scary. I look
okay, but my medical situation is very serious, and I am literally praying for a
miracle – a gift that would give me a chance to not only to survive, but also to
thrive, and to continue living with purpose, and gratitude.
"Upside: I still have my sense of humor, and my belief that hope is real, and
that each day and each moment at hand truly matters, if we make that our
choice. And while I endeavor for length of living, I will do all I can to create
depth of living – for me and for others who are a part of my journey. For humor,
I have considered wearing a snorkel to the facility for one of the HBO2-T
“diving” sessions, to see if the staff has a sense of humor that is as twisted as
mine. And for celebrating life and partying with a purpose, in addition to praying
and playing each day, I am actively working on checking off my Bucket List
items. There are only ten items, and one is already checked off (digitizing my
gazillion photos), and two more are in the process of being tended to. Only
seven to go! Some are a bit challenging, as they have to do with travel, which
has so many logistic issues. And #10 could have been extremely challenging, as
it has to do with celebrating my 83rd birthday and becoming a beach chair
philosopher. But I have a friend who said we just need to celebrate my 83rd
birthday EVERY July, and rather than “countdown” time like we did to
Thanksgiving, let’s instead “count up” as the years pass, and I grow into my
actual 83 years. Sounds like a great plan, and an amazing adventure!
"So that is where my life story happens to be right now. Rather than
desperation, I am living with inspiration, and motivation, (and a bit of
humor'ation). I acknowledge the facts that describe my journey, but I also
embrace the faith and blessings that define my journey. I choose to take the
scattered remnants of every chapter – past, present, and future – and weave
yet more "shreds for the shawl" that I wrap myself in, and which keeps me
comforted with hope (and sanity and wit) as I continue to celebrate every
sacred bit of time.
"What next?
Apparently, I should play the lottery. It seems I hit the jackpot with respect to
ending up with so many potential but undesirable side effects and adverse
reactions to each of my treatment modalities. No one really knows “for sure”
why this has happened – perhaps because of my combination of rare underlying
diseases that made me more susceptible to various cascading complications, or
perhaps it has nothing to do with anything, and I was just someone who was
going to happen to encounter so many challenges.
"I now have a nifty new t-shirt with the phrase “It is what it is” translated into
Latin – which pretty much sums up the facts of my life. But the truth of my life
is that “It will be what I shape it to be” – regardless of the facts, or the
outcomes of any treatment.
"Some of my doctors are actually talking about writing a case study on what has
occurred along my journey. They would do this because my situation is quite
unique and would potentially be an informative (or at least interesting) read for
other professionals. But they would also do this with the hope of potentially
helping other patients in the future.
"As medical technology advances, more and more children and adults with
neuromuscular diseases and mitochondrial myopathies and dysautonomia (and
other rare combinations of life-threatening conditions) are living longer lives,
and so, more and more folks will statistically be likely to end up with a cancer
diagnosis. My journey is a story of chronic and traumatic life-threatening
diseases clashing as so many unknowns and unforeseen consequences suddenly
became undeniable and unavoidable during and after treatment planning and
implementation. Perhaps insights or newfound considerations and lessons from
my journey will help with options or choices that become the part of a hopeful
story on some other journey.
"I may never have a “memoir” like I wrote for Mattie, but I am trying to live up
to what I taught Mattie – that how we want to be known, and remembered, is
how we should choose to think and speak and live and be each day. I hope that
“how” I am choosing to shape and share the content and pages of my life story
is a gentle and accurate balance of both facts and faith, which somehow inspires
others to celebrate life, every day, in some way. I want to be known, and
remembered, not only as a woman of deep faith and immense gratitude, but
also as “the case study of a woman who defied all odds, and who was healed by
faith and prayer, and by excellent and creative medical care.”
"As I step “forthward” in my journey, I invite you all to join in this prayer for a
miracle – that this new treatment actually stops the progression of an incurable
condition. Please know that I do pray each day for all people in the world to
know hope and peace, and with special gratitude and intention expressed for
those who are somehow a part of my life journey, whether by choice or by
chance. Thank you.
Peace,
Jeni (“Mattie’s mom” / “Mama Peace”).
I want to write a book, about my life.
She has posted another update, but as I had to change my facebook password recently, (and can't for the life of me seem to remember it), I'll have to retrieve it some other way. It will be posted here in time.
2016 0530 Medical Update –
In medical updates last summer and fall and into a very long winter, I referred to the
familiar “half glass” conundrum as I chronicled and considered my journey through
treatments for cancer.
I mused that there are very real reasons for various perspectives held by various people,
or even by the same person at various times. Our interpretation of that glass – whether
half full of water or air, or half empty of water or air, or perhaps some sips of both water-
and-air halves – is often a collective expression shaped by experience and emotion.
Sometimes we are, or feel, thirsty or air-hungry. Sometimes we are, or feel, flooded or
wind-swept. And sometimes we are, or feel, confused, or conflicted, or simply content.
Such facts and truths, combined with personal choice, will inevitably impact how and
where we place the measure of our mark.
Really though, my reason for the philosophy glass reference was not so much about
weighing in on optimism, or pessimism, or treading the middle of the glass’ism. Instead, it
was a way for me to reflect on some heavy facts and deep truths, and then respond to
them a way that could help me begin considering the “what next?” of any reality, and any
outlook – mine, or others’.
I wanted to move beyond “realities that were, or are” – such as, in fact, the proverbial
container has some amount of both water and air, and in fact, my life journey contains
some amount of both blessings and burdens.
I wanted to move towards “realities that could be, or will be” – such as, in truth, what
difference does my reflection on water-and-air or my attitude on blessings-and-burdens
make? And more importantly, in truth, what difference can my response to any reflection,
or any reality, make in any next moment – mine, or others’?
I wanted to journey “forthward” – in thought, and in effort, and in commitment to shaping
my “what next?” – even amid so many deep-and-heavy truths, and so many in-fact-
realities that were not (and are not, and will not be) my choice.
Now, a wintery-spring is beginning to give way to yet another summer. And I am grateful
to be here, in this moment, and in any next moment that happens for me. Against many-
many-many odds and complications, somehow, in fact and in truth, I am still here!
I am able to look back and give a wow-nod (and admittedly, a wagging-shake of the head
as well) to another round of seasons charted in my life journey, and to let out a breathy
“whew...” – perhaps audibly, or perhaps sounding only in my spirit – as I turn towards
“what next?”
But it’s okay – it’s not a sigh… it’s a cleansing breath.
In fact, I am still battling the devastating impact of combined modality cancer treatments
that didn’t play well with my underlying neuromuscular and dysautonomic diseases.
In truth, I am still balancing blessings and burdens, and turning my reflection and my
stance from the past toward today, and toward the future.
And in ironic coincidence, the use of another water-and-air analogy for the current status
of my journey is quite appropriate.
After learning that the damage and scarring to most of my small intestine was “fibrotic”
(aka progressive, and incurable, and advancing at an unbelievably rapid rate), my medical
team offered me the opportunity to try hyperbaric oxygen therapy treatments (HBO2-T).
Every day (including some weekend days and holidays), I spend several hours in an
HBO2-T chamber, where I virtually travel down 2.5 atmospheres (approximately 85 feet
below the sea). In doing so, the 100 percent oxygen that is piped into this highly
pressurized chamber is forced from my arteries and veins into my blood plasma – creating
the equivalent of something like 400 percent oxygen – which can lead to the creation of
new capillaries and improved blood flow, and hence, the healing of areas in or on the body
that would not likely heal under typical conditions.
While institutional levels of HBO2-T have helped improve some types of radiation enteritis
and reduce large intestine inflammation for some patients, this treatment has not been
used for someone with radiation fibrosis – like me. Nor has it been used for someone with
a condition so rapidly progressive, or that has impacted the small intestine, and in such a
destructive way so soon after chemotherapy and radiation treatments – again, like me.
While there were no statistics on what may or may not happen as a result of this
treatment, not trying it was not really an option, as I was headed towards a major surgery
(removal of about 70 percent or more of the small intestine) – a situation that I would not
likely survive, especially in my condition of being very malnourished (not necessarily by
looks, but by medical standards). So, the decision was made that I would be offered up to
20 sessions of HBO2-T. If there was some improvement noted during that time (which, if
it is helping, usually occurs by session 15 to 20), I would be offered a “full treatment
course” of 40 sessions.
I have to admit, as I approached the twentieth treatment, I was very concerned that
future sessions might be cancelled. There was no evidence to indicate I was “healing.”
However, the HBO2-T technician and doctor also noted that because these are “internal
wounds and fibrosis,” there may not be simple or clear signs about whether the treatment
was, in fact, helping. They also noted that while I was not gaining back lost weight, I was
no longer losing more weight. So, they continued, with plans to complete the full 40
“diving sessions” – which will occur this week.
That was good news. But, I have even better news. The medical team met in recent days,
and came to this realization:
Unfortunately, it does not seem (at this time) that I am being cured by the treatment.
Amazingly though, neither am I getting worse. I continue to have days of intense pain and
miserable abdominal distention, during which I am unable to eat or drink anything at all.
But I also am having days of tolerable pain and minimal distention, during which I can
enjoy some food and drink items from my new restricted diet. Better yet, even on the
days of intense pain, I am not violently ill as I was intermittently from September into
January, and then constantly from January into April – which means even though the
chemo and radiation fibrosis disease is not fixed, I am actually doing better -
comparatively speaking.
(NOTE: No worries on hydration – I still have my PICC-line, or central i.v. line, and I
receive fluids and electrolytes every day of the week, and also extra fluids on the “can’t
eat or drink days”).
My HBO2-T technician (an amazing and very nifty person) likened me to “a giant ship out
on the water and headed directly towards a deadly collision.” He said, “The hyperbaric
oxygen treatment, combined with the new dietary restrictions, seem to be slowing the
momentum of the ship – a bit, and angling it away from a straight on inevitable collision -
a bit.”
Then he added, “Perhaps an extra month of treatment – while not likely to turn this
hugeness of the ship around – may at least possibly slow it a bit further, and angle it a bit
more, prolonging the time until a collision.”
And with that, my “complete HBO2-T course” was increased from 40 to 60 sessions.
I do not know what the facts of my future will be later this summer in the weeks after all
of the HBO2-T sessions conclude. I do not know for sure what realities I will be facing in
the coming fall, or in any future moment really. But I am grateful in, and for, this very
moment, and for so much more. And that is the truth.
I am grateful for the ongoing commitment of my medical team – my chemo and radiation
oncologists, my surgeons, my cardiologist, my pulmonologist, my nurses and techs, and
my hyperbaric oxygen technician and doctors. Even when the facts of my complications
are confusing or ominous, the truth is that they are individually and together an
enthusiastic group of people, and they seek creative and expert care options that offer me
a chance towards the future.
I am grateful for the ongoing support of my logistic team – my drivers and helpers and so
many nifty folks from church and community (and especially my “Coordinator
Extraordinaire” – Ann Staal). Even with the facts of so many extra rides and tasks that
need tending to, the truth is that they are cheerful and reliable, and continue to go above
and beyond what they offered to handle for “about 12 weeks” – even though it is now
“nearly 12 months” later.
I am grateful for the ongoing love and motivation of my friends and global family
members – my “Camp Buddy” Diane Tresca and her daughter Annie, all the incredible
folks with the We Are Family Foundation and the Three Dot Dash GTLs, Larry Paul and his
inspirational texts, more nifty folks from church and community, and my growing number
of Facebook friends – many of whom I have never met in person, but am now connected
to in life. Even with the facts of my life story (which are often pretty icky and perhaps
even on the level of “rather dreadful”), the truth is that rather than run away from my
journey, they choose to come closer – and listen and learn, and live and laugh – with me,
and for me.
And, I am Ever-grateful for the ongoing Every-thing of my Step’obbi’comb’ake’r’oss Family
– the Newcomb kin (Sandra, and Mema & Papa), the Dobbins/Gross kin (Heather &
Shelly), the Baker/Proctor kin (Jamie & Tommy), the Dobbins kin (Chris & Cynthia), the
grandkin (Kaylee & Leah, and Collin, Chase, & Ivey, and adopted-grandkin Max), and the
Stepanek kiddos (Katie, Stevie, Jamie, & Mattie). Even with the facts of Everything, they
are the truth of Everything – they “Remember to play after every storm!” and they help
me “Celebrate life, every day, in some way – with gratitude” – which makes both living
and being oh-so-worthy.
Always, I am grateful for the prayers of so many folks around the world. Prayer is
powerful.
With faith and prayer, I am able to look ahead, of course with bits of hesitation, but
mostly with boatloads of hope. I do not try to look too far ahead – just enough that I can
recognize and appreciate and balance the facts-and-truths of both water and air (and any
other blessings or burdens) in that proverbial yet perplexing philosophy glass.
As I continue to move forthward, I accept with gratitude whatever time I am offered. My
prayer for my personal journey is the same as my prayer for the journeys of other people
– to know purpose in life, to live and celebrate such purpose each day, and to be a source
of purpose for others through such living and celebrating.
I still hope for a miraculous and complete healing of my body, and I pray for healing
strength in mind and spirit as well. And of course, I still plan on playing as much as
possible – checking off Bucket List items, and perhaps, really showing up for one of my
HBO2-T “diving sessions” in goggles.
Peace,
Jeni (Mattie’s mom / Mama Peace).
Apologies for lack of quotation marks in that last post. I had copied and pasted directly from facebook and was in a bit of a hurry to get it posted.
Today would have been mattie's 26th birthday had he lived, but he is in a better place. It is a difficult day for his mother, as this is also the day her daughter Katie, the eldest child, had passed away after a disautonomic storm, four years before Mattie's birth. Katie's kidneys and bladder had stopped working. praying Jeni will be okay despite the emotional challenges today is bringing her.
In reality, she is fifty-seven, but one of her items on her bucket list this year was to have her 83rd birthday in case she does not make it to next year. As far as I can tell, she seems to be doing okay. not sure what happened as a result of the hyperbaric oxygen therapy.
This is her reflection on last year's events. the update she posted on this day last year is one I did not post here previously, so the note she posted then will be in the next board post here.
"Wow. Hard to believe I wrote my first "End of Week Note" a year ago today, as I began chronicling my journey through treatment for the cancer diagnosis I had received during early July, 2015. and wow, hard to believe that I am not only still here today, but also doing as well as I am doing, all things considered. it is still an intense and rough journey, and short of a miracle, I will never be without daily medical challenges that have resulted from combined modality cancer treatment. and short of a miracle, whether I ultimately win the dreaded cancer battle or not, it is not likely that I will have a longterm positive outcome with respect to what treatment has done to my body. Surgery and chemotherapy and radiation do wreak calculated havoc on those nasty cancer cells, but they also don't play well with neuromuscular disease, and wreak incidental havoc with autonomic instability and multiple body systems and organs. Yes, the mottos my medical team and I have learned to accept for my care plan include "No more bad news is good news" and "This is about as good as it will get, so let's make this as okay as possible'. Yet I am truly blessed with many good days during which I choose to work and play and create memories and celebrate life with gratitude. and even on those many not good at all days that involve a lot of pain and illness, I am blessed with the amazing support of my family and friends and truly the best medical team ever. And so, I am still able to choose somehow to create nifty memories and celebrate life with sincere gratitude. A year ago, when I posted the update below, I could never have predicted the (hell of a) journey that was unfolding as I rolled into and through and beyond each of the past 52 weeks. today, even with hindsight, and even with still visiting the room with the blue chairs at least once a week for ongoing treatment, I have no regrets. I do have frustration and some sadness over having to adapt to progressive changes and losses that are my new reality. And I have to admit, it is not my choice to be in a life journey position where I am too and ever aware of the depth and value and blessing and purpose and potential finality that can be the truth of any moment in any day for any person, really. but I have no regrets about my choice to battle the beast that is cancer and it is my choice to embrace each morning and tuck away each night with the phrase, "thank you" in those commencing breaths, as I draw strength in faith and accept mattie's final challenge to me: "Choose to inhale ... Do not breathe simply to exist." thank you all, for the many prayers and the abundance of love and support.
end of week 1 note:
"When I had my chemo session for the first time this week, I looked around the room with the blue chairs, just observing. I saw a 70- or 80-year-old jewish Rabbi, reading some material and making notes on paper, and receiving chemotherapy for cancer. I saw a 50- or 60-something-year-old black woman wrapped and dozing in a blue plaid blanket, and receiving chemotherapy for cancer. there was a white man, perhaps in his 30's or 40's, wearing shorts and a beach graphic t-shirt and playing games on a smartphone, and receiving chemotherapy for cancer. There was a young professional, probably still in his 20's, wearing business attire and sorting his briefcase several times and receiving chemotherapy for cancer. and there I sat, a disabled Christian woman in her mid-50's, listening to music through earphones, and receiving chemotherapy for cancer.
"I'm sure that if this was not just an adult treatment center, I would have seen children there as well, and parents. Some of these folks had hair, some did not. Some talked, some were silent. some looked around at the others in the room or out the window, some looked around the room at nothing at all. all were there, attached to machines that infused hope through toxines in an effort to defeat cancer. I was the last person attached on that day, but my infusion machine finally beeped and chemo session one of six had concluded.
"I left the room withthe blue chairs with this reflection - cancer is unbiased, nonjudgmental, and inclusive, and yet cancer respects no one. I consider myself a peace seeker, a peace maker, and a peace bringer. and while I am at peace with God and with my purpose in life, I am at war with cancer.
"Tomorrow - week two begins with 87 days until Thanksgiving. moving Forthward. peace is Possible"
Jeni (Mattie's mom/ Mama peace)
Update: she is not doing better, but she is not getting worse. I suppose no news is good news at this point. she still lives each ay with purpose, and finds the strength to get up, even when things feel physically or emotionally burdensome.
She had posted an interesting piece on goings-on and hope for the future the day after the election, but I can't copy and paste that here just yet, as I need to find it first. Hoping to have that up after the end of the semester sometime.
please, keep sending positive thoughts and/or praying for this woman who, to me, symbolizes courage. Emotional and physical suffering, I feel,makesus stronger in some ways, if we are able to find the strength to endure.Where that strength comes from is completely individual, but either way, to say, "yes," and, "Thank you," each and every day despite challenges, fear/hesitation, and to be that source of support and strength for others is wonderful. Personally, I don't have much to complain about when I look at those in her situation. I get up without thinking about it. I breathe, eat, and move with ease without having to think about it. many of us do these things without concern, but to wake up each day, not knowing what the day will bring medically and physically, and to always have the spiritual and emotional fortitude to say, "Yes, I will choose to inhale, and not breathe simply to exist," (even if other people have to sometimes be these things for us), is beautiful. so much to learn from her as we move forward, drawing ever-closer to 2016's end.
More to follow when I see further musings from her. stay tuned.
Here is what she had to say the day after the election in November:
“We” as a country, as a nation, are clearly divided, and angry, and hurt, and scared, and making statements – this way or that way – about the need for change. That is evident.
But “WE” – the people of hope and peace and justice and inclusion and celebration of humanity – need not be divided, or dismayed, or disenfranchised, simply because folks so desperate for change somehow were able to turn a blind eye to the intolerance and a deaf ear to the bullying that were such an inherent part of the presidential campaign – and spoke louder on a given day – albeit a given day that will impact years to come.
The election is done. But WE are not – regardless of how we “feel” about the results.
WE must not lose clarity, and we must not allow ourselves to be guided by or empowered by or paralyzed by emotion – whether satisfied with the vote results,or terrified of what is to come, or wondering what difference any one person can make as we move into the future.
WE must be united, more than ever, and seek peace, and make peace, and bring peace – and simply BE the source of hope and peace while we move through the next four years.
WE can choose to respond, not react, to the results of this election.
WE must tell our children, and each other, it will be okay, somehow. And WE must choose to make it okay, by being role models and good neighbors, and by refusing to allow or be blind or deaf to intolerance or bullying – in word or action, in our homes and schools and work places and communities – in any moment or in any space and for any person.
WE must do all we can, as individuals and as families and as communities to ensure that it IS okay – not just for ourselves, but also for our neighbors – of all races and religions and realities.
WE must rise above fear, and anger, and discouragement, and disagreements, and actively tend to hope and peace, and people – one by one and many by many – so that with or despite the voices that happen to have the elected-power to lead, WE are the voices and attitudes and actions that move time and humanity forthward – with hope and with peace, and with kindness, and with indivisibility, and with justice for all.
WE must each somehow, even in the midst of a swirl of emotions, commit to “good” in attitude and action – and not become victims of emotion.
In his book, “Just Peace: A Message of Hope,” Mattie J.T Stepanek writes that we, the people, are a mosaic of gifts, but that mosaic is being shattered and the pieces scattered, because of choices that we – even as good people – are making. But he implores us to not lose hope, or let go of the endeavor for peace. He encourages us to gather every mosaic piece – bright or broken, old or new, large or small – and tend to each one, and rebuild the mosaic – with balanced choices. And he even gives us a choice-by-choice guide for journeying along pathways to peace – if we make this our choice.
It is okay to be sad, or in shock, or scared, or to have any other feelings as a result of this election. It is not okay to get stuck in feeling hopeless, or helpless. We cannot choose our feelings, but we can choose the shape of our attitudes, which unfold into words and actions. We can process our feelings, and together, move forthward.
Hope and peace are not easy choices, but they are worthy choices – always, and for all people.
Despite the election results, and whichever side of the vote we identify with – this way or that way – we can each commit to creating the change we desperately need, without hurting others – in body or mind or spirit.
Hope is real. Believe it.
Peace is possible. Be it.
I Am. Together, We Are…
With prayers for our world,
Jeni (Mattie’s mom / Mama Peace).
Brief update: She had to have a pacemaker put in last month. as far as I'm able to tell from her FB posts, she is okay.
She has celebrated her 58th birthday.
This past Friday marked the thirtieth Heavenly birthday for her son Stevie, who passed away at 6 months and 2 days of age due to an oxygen tank malfunction. a valve froze, so oxygen could not get through. She is still living, taking pictures, praying and playing.