They told me monks invented the shape of pretzels to mimic the shape their arms would make while praying, so I placed one after another in my mouth and ate prayer after silent, salty prayer. I didn't bite down. Not once. Instead I let the salt granules melt, the dark layer of brown disintegrate until the soggy innards of the prayer became nothing but thickened saliva for me to swallow. This was holy work, this ingestion of unspoken prayers. It was the only food I could eat since eating seemed so odd to me. How could I pick up a fork while my pale three-year-old lay fighting for his life next to me? I was afraid to breathe, let alone chew.
"Eat, Amanda! Eat!" the nurses would say, the relatives would say, the teary-eyed-and-bewildered friends would say. I always nodded. "What sounds good?" they'd all ask.
I would say, "pretzels," but it might as well have been "prayers." That was all that seemed to register in my mind. That's the only thing I was doing without making the words at all. Just the feeling. So, when words to God couldn't be formed without sobs, I prayed in pretzels.
All Gideon will eat right now without crying in pain is soft pretzels without salt. I have been warming them up at school and bringing them to the lunchroom. The damage to his intestinal area from all of this chemo poison doesn't seem to want to heal. His insides are aflame and in so much pain. So, I feed him more plain and tasteless pretzels, and I can't help but feel myself being transported back to that hospital stay full of pretzels and fear. My prayer pretzels have not heard any new ones lately. Heal, baby! HEAL!
Can a communion wafer be made out of pretzel? I think it should.
Gideon is upstairs sleeping. He wants me to crawl in bed with him so that we can cuddle. He promises to "Treat me like a lightbulb" even though he's on his "crazy person medicine" (steroids). That's what he said... I will be his lightbulb and he will treat me like a fragile thing since I am his "sweet momma". Thank you, God. He is a gift even when he is RAGING from the medicine.
Gideon had his spinal chemo on Tuesday, and today he had a headache through and through to a full-on body-on-fire-ache. Again, my boy was able to curl up on my beanbag and sleep as my classes filed in and sang and danced around him. I kept offering going to grandma's house, but he wanted to be by momma. And pretzels. Those prayer-full pretzels.
First, the news we have all been hoping
for: Izzy's scans of her tumors came back cancer-free! Thank you for
all of the prayers and well-wishes. Please keep her in your prayers
as the doctors continue to scan and check her spinal fluid, as well.
She fights through her disease with so much beautiful optimism, it
makes me want to stop grumpy strangers on the street and tell them
about her... Life is a miraculous gift, and even though her life is
so much harder than so many others, Izzy knows and sparkles through
Life has been uplifting and eye-opening
at the same time these days. I am lifted up by the tremendous
dominance of good souls on this planet seeing needs, and filling
those needs without a string attached – just open hearts. The
volunteers, the kids who played kickball, the people who donated time
and money...I was overwhelmed by that love. It is crazy to me to
comprehend any negativity someone would point out when it comes to an
event benefitting childhood cancer. I had ONE person complain about
the event. ONE. One person who must have so much internal anger and
frustration in that moment, that the big picture was completely askew and the
goodness of it all could not come into focus for him.
At the time that I opened the email,
little Izzy was having her tumors in her brain scanned for cancer.
It was the exact moment because I remember closing my eyes and
praying for Izzy and sending those pink bubbles of prayer to the
table where she laid under the influence of a strong sedative. So,
that's where my mind was. That's where my heart was. Then, I read
negative words from someone who never experienced any pain from
childhood cancer. From scans. From any of the nastiness this
disease entails. And he felt it was in his place to do this – to
be negative at all about our event. I saw red, people, and I was NOT
proud of the thoughts I had running through my mind about this
individual. It took over me, the absolute disgust I was feeling. It
trumped the thousands of dollars we earned, and the gorgeousness that
was the celebration of these kids who stood with their warrior medals
hanging around their necks. I forgot, in that instant, the deeply
emotional moment when 36 sky lanterns were lifting into the sky
filled with prayers for the 36 kids who were diagnosed with cancer
that day. One pink lantern lifted in memory of Hailey Grace Brown's,
too. The gravity of why we did what we did and how that
accomplishment felt all evaporated by one person's negativity.
Whose fault was that?
They say it is only in experience that
true wisdom is garnered. I will take this rant-like email as an
experience. Obviously, not everyone is as passionate about funding
childhood cancer research as a mom who has a child with cancer, but
it is clear that the desperate NEED for this funding is widely unknown. I will take this email as a message to learn by: many
people are in the dark about the facts. This event is not just a
school-wide assembly where there are supplies we need, volunteers to
set-up, etc. It is so much more than that. This event, Mattawan
Kicks Out Kids' Cancer, is about kids playing in honor of children in
our OWN school battling this disease. It's about showing these kids
that we support them and desire a cure, too. It's showing that we
understand that it is only in advocating and in raising funds for
research that progress towards a cure is certain. It's about LIFE
and quality of LIFE for children.
I am now thankful for that email. It
only strengthened my resolve to power through and fight harder on
behalf of the children with cancer who cannot verbally stand against those who do not support the cause. This did not deter me, but instead, I
went through my list of donors, volunteers, and DREAM TEAM members
who worked tireless hours to make this event a reality. I fell
asleep counting, and I was well into the hundreds. This is the
truth, and it felt much puffier and comforting than counting sheep.
I went to sleep counting the human blessings who understood that
without CureSearch, when Gideon was diagnosed, we would have been
told that his end was near. Instead, he has a positive prognosis.
CureSearch saved Gideon's life. No negativity can tarnish the beauty
that is progress against this disease.
To all of those COUNTLESS people who
dedicated even one minute or one dollar to the event, THANK YOU for
being one of the puffy sheep who shed light on one dark experience,
and blessed so many lives that rainy and cold Saturday. “...whatever
is true, whatever is noble, whatever is right, whatever is pure,
whatever is lovely, whatever is admirable--if anything is excellent
or praiseworthy--think about such things.”
Thankful for wisdom that always was, is, and will be in the future.
if you get anything at all from this post: Don't allow darkness,
especially if it is only ONE cloud, drown out the sun that is life
and beauty. Wisdom. I am stiiiiiiiill learning.
I am overwhelmed by all of the generosity and help so many provided in this year's Mattawan Kicks Out Kids' Cancer event! I know so many worked tirelessly alongside me, and there are just so many people I want to thank, and I will do that in my next video :). We started last year hoping to make $5,000, but we more than doubled that goal. This year, we have made $18,000 and people are still opening their wallets and donating. If you want to drive that amount even higher, please click here. Soon all of the money we made at the event itself will be plugged into the website. CureSearch has made Gideon's prognosis promising. Without this organization, his cancer would be a final death sentence. To say I am grateful for their work... Well... That doesn't come close to explaining it. I am not afraid to beg for sponsors, volunteers, bids or auction items. My son is breathing.
I have a new request for every set of eyes reading this message: pray for sweet Izzy. Sparkly Izzy is a first grader at Mattawan, and I have the immense joy of being her music teacher. I mean it. I say immense joy and it is the honest truth. When she talks, there is a giggle ready to escape behind her every word. Her eyes glimmer, and when she feels happiness, she tilts her head and lets it completely engulf her in twirls and exuberance. She is the very pinkest and fluffiest of girl purity. And she needs us all to pray for her. Tomorrow she has scans, and we needneedneed those scans to come back clear of this monster known as cancer. I asked her momma for permission to ask for those prayers. I am pausing all celebratory videos for our event yesterday until I can stop holding my breath and good news is the result of those scans. Izzy, I am sending my prayers in the pinkest, most irredescent bubbles. When they pop over your bed tonight, I pray they sprinkle over your head like fairy's dust -- the most powerful and magical of all fairies. I love you, sweet girl!