This entire blog has been my honest and raw emotions, so I won't stop now. Truthfully, I have logged onto this blog countless times since August. Countless. And each time I got to this winter white blog entry screen, I just stared at the blinking cursor. Each blink of the cursor flashed a different emotion or a new memory or praise just begging to be recorded. Gideon's sparkling eyes as he looked at me and said, "I don't have to take chemo tonight, do I? My cancer is GONE," and then the memory-moment tinged with the smell of BBQ and saturated by so many people's love around us as Gideon let go of his green lantern at his NO MO' CHEMO party as he said, "I wish all cancer kids could beat their sharks" as it floated away; or the time big brother Brody said to Gideon in the backseat, "I was there next to you every time you woke up from your sleepy chemo, Gideon. I was always happy when you opened your eyes." How can I type with these images of gorgeousness burning holes through my soul and making my fingers useless and inadequate? Feelings, thoughts, and emotions I wish I could cram into letters and words for you all to just take a hold of and know what it is I am feeling right now, have just seemed impossible to track down.
So, I will update you, but it will be impossible for me to fly you to the top of my balloon heart that is floating inside of a rainbow while nonstop fireworks erupt all around it. (Ugh. Still not even close to describing it.)
Gideon has been deemed CANCER-FREE. He has been off of chemo for a month now, and I still have this itch at night to paw through his medicine kit and collect all of the pills. It is so strange to kiss him at night and not count pills before that, strange in a FABULOUSLY strange way. All he is taking now is Bactrim for his immunity now. Our course of action is to now get blood checks every month to make sure those cancer-sharks stay away for good.
Today, Gideon had to go to the doctor to find out about a rash that won't go away. It was with a REGULAR doctor at a REGULAR clinic, and I think I scared the doctor out of the door as she walked in and I exclaimed, "It is SO good to meet you! Hi! I'm Amanda," with a huge out-of-place smile on my face. She was probably thinking, Lady, your kid has had an itchy rash on his body for three weeks. What is your problem? Why the goofy grin? If she had only known what I really wanted do: hug her and plead for some kind of badge pinned on my shirt that said, "My kid went to the doctor because of allergies manifesting themselves on his skin. I did NOT go to the doctor because my kid has cancer, because he DOESN'T!" That would be a big pin to fit all of that. I would wear it, though, and I would allow every stranger I pass to squint and read it. Oh. A doctor's appointment in a germy office full of crying kids, and I was in a new kind of heaven on earth.
Now we keep fighting for all of Gideon's friends so that they can also experience this joy of being cancer-free. This month of CHILDHOOD CANCER AWARENESS has been overflowing with events and planning. The kickball game I ran for the last two years is on again THIS year. There have been so many amazing things planned, and this year it is being run by a fabulous group of high schoolers, my Dream Team. I am excited to watch them pull it all off. All of the proceeds this year will go to Cancer Families United, a local non-profit that services families in our area who are plagued with childhood cancer, all while advocating and fundraising research for a CURE. I am on the board of this non-profit as the Vice President, and I am already seeing its influence spread throughout the community. Wouldn't it be amazing if GOLD ribbons were as recognizable as pink?
So that I do not blab any further, I will leave you with these things YOU can do this month for childhood cancer awareness. I hope to see you at Noodles and Company on October 2 and at the BIG kickball event (with a FREE Magic Show at 4:30) at Mattawan Schools on October 5. If you would like to tune in, I will be on 106.5 tomorrow morning at 7:30, and I will be on WWMT channel 3 news on Monday, September 30 at 6:30 promoting our upcoming events.
I believe in miracles. I have seen them firsthand. I know that God has been with us and making Himself blatantly known to us several times throughout this journey. I feel that He gives us all missions in life, and mine is and always will be to fight childhood cancer and help families who have been thrust into this cancer-world. We have hands, minds, and pockets. I pray we choose to use all three in a way that benefits the world. Because others felt this was their mission as well, they funded the research NEEDED to save Gideon's life. He was saved through others generosity. Every little bit helps.
(Still to come: Gideon's No Mo' Chemo slideshow...)
More No Mo' Chemo pics to come, but for now, one more video about Cancer Families United:
Gideon:"The Lord is with you, mighty warrior."
Follow Gideon Schripsema's journey as he battles leukemia. NO MORE SHARKS!!
Cancer-FREE
Wednesday, September 25, 2013
Wednesday, July 24, 2013
HUGE day. HUGE.
Today I was transported back to the
beginning of this journey. It was the day I went to Old Navy, only
days into Gideon's diagnosis, and I couldn't help but to feel in awe
of the regularity of the world around me as my own personal world
felt as though shrapnel and shards were all that was left. People
stopped at stop lights. People bought clothes. People even went
through the drive-thru on their lunch hour. This time the tears that
surfaced were the ones of awe as I realized what time and healing
could butterfly out of the most disgusting of worms. I was at Barnes
& Noble, searching for the best read of my life and I had to run
to the restroom to sob. It instantaneously erupted inside of me
somewhere in the M section of Literature & Fiction. Just a few
stores down housed the Old Navy that felt like an abyss of emptiness
and hollow wishes three and a half years ago. I honestly had no idea
if Gideon would live or die, and my soul was on that same
teeter-totter of fragility. Now, this Tuesday, July 23, Gideon
received his very LAST hospital IV chemo dosage, and the beauty of
that reality crashed down on me as book titles blurred into spirals
of unfocused, soft, and silent fireworks through my tears.
LAST. And this last was jubilant.
Brody and I stared as we witnessed the very last of the poisonous
life-saver being pumped into Gideon's veins. Beautifully, his bag of
chemo hung next to the clinic fish, all colorful and festive, as if
he knew all along those fish-brothers of his would beat the sharks
and he was just biding his time in the corner, waiting to be our
banner of triumph at the end.
Gideon still has a month of oral chemo,
ONE MONTH, but this week also marks the LAST WEEK OF STERIODS! He
always responds so much better during this week of pain, discomfort,
and emotional upheaval when he is in Grand Marais. Even though the
boys and I just came back two days ago, we are turning around and
heading north once again (this time with Alex, his family, Ann, and
her girls) to soak in the healing air that resides north of the
bridge: our paradise.
After chemo, I asked Gideon how he
wanted to celebrate this last dosage of IV chemo. He responded, “I
want to go see TURBO with you, Brody and Alex, and then I want us to
go to Grand Marais.” So, we did see the movie, and we are going to
our mecca of all that is gorgeous on this planet. Please pray for
Gideon so that this trip truly is a healing one of peace and not one
riddled with pain of any kind. It would be a gift from God if we can
coast to the end of his chemo, August 18!
Monday, May 13, 2013
Mother's Day Wish
Happy Mother's Day (one day late)!
This is always the day when it hits me the hardest, this being a mom
thing. Not only do I sometimes wonder how my babies are so big, how
I am not twenty anymore, and how come there is always just one
chip/cracker/piece of cereal in the box, but I also wonder at the awe
that is this fragile miracle of motherhood. It doesn't feel fragile
sometimes. Sometimes the battle of will between parent and child can
feel immovable and solid. These kids are so very vivacious and full
of youth – what can be stronger?
But it is fragile. We don't know what
a doctor will announce tomorrow at an exam. We don't know anything
but right now. And my right now with Brody and Gideon on Mother's
Day has been outstanding. There was a lot of cuddling, walking in the
sunshine of St. Joe and pointing out flowering trees. I feel
brighter with my babies, and I don't want to think what this day
would be like if the right medication was not there to save Gideon's life -- the medication CureSearch brought into his precious life.
So, I almost missed the boat in asking
for your help this year. It has been busier than the last three
combined, I think. But, please consider walking with us this coming
Saturday at the Portage Celery Flats for CureSearch for Children's Cancer. Just click here and register.
In honor of every mom I know who heard that her baby has cancer, in
honor of every fighter in our area, please join us. You will feel your heart swell
with thankfulness and wonder at each child survivor who will be there
on that day. If there is no way you can attend, please consider donating whatever you can -- even a few dollars.
Again, I apologize for waiting so long
to get the invite out to all of you. Don't worry about fundraising,
just sign up and come!
Saturday, April 20, 2013
Butterflies and Gerber Daisies
I am
doing that kind of breathing when I hope that each little breath
scoops up a particle of my broken heart and puts it back where it
belongs. Tonight was incredibly hard. While Gideon was taking his
chemo, we were excitably talking about how his sharks are being
harpooned and how the good fish are strong inside of him (kind of
like THE FORCE, and then we went off on a five minute tangent. We
are both good at those side street conversations). Out of nowhere,
Gideon asked, “Mommy, how is that girl from the clinic?” I began
naming different girls being treated and describing them. He kept
shaking his head and saying no. I could tell he was losing his
patience with me as I diligently went through my mental list. He
added this detail, “We sang together in the hallway and played
instruments together. She loves butterflies. Remember?”
I
did remember. When I named her, he nodded his head emphatically and
said, “YEAH! How is she?”
Here
is when I was at a moment's loss. I promised myself and Gideon that
I would never lie to him about his cancer, about the treatments, not
any part of this process. I want him to feel like he could always
trust me. He knows that when I say it won't hurt, it won't. He
knows to get brave when I tell him something will hurt. There is a
strong trust there. But, the selfishness in me did not want to tell
him the truth. I didn't want him to know. I wanted to guard his
innocence. How could I protect him from this heartbreaking truth?
What if her name was mentioned at the CureSearch Walk and he hears
the news that way instead of from me?
So,
I told him, “She is in heaven now, Gideon. She's in her real
home.” Then as I saw Gideon's little lip jut out, and heard him
try to talk but no words would come out, my breaking heart screamed
out to God to keep my tears away, to keep me strong. As I leaned
closer to his lips, barely a whisper was escaping. He kept
repeating, “That's not fair. That's not fair. That's not fair.”
And tears streamed at a steady rate down those empathetic cheeks of
his. I agreed it wasn't fair and I scooped him up.
“Why,
mommy?” he barely choked out. I told him that we are all on this
temporary home for a little while. Once we have done what we were
sent here to do, we go home. I told him that this precious girl got
her job done very early and no one understands why or how, but we
have to keep living and loving and remembering.
He
then said, and this part makes me shake my head in wonderment and immense sadness, “It's
also not fair because I have cancer but I am still on this earth, but
she isn't. Why do some sharks beat the good fishies? She should
still be on this earth with me.” It was as if he felt guilty that he is beating his cancer! I told him that we all would
rather have her on this earth, too, but we have to let her memory
cause more love and light than anger. I added that I knew for a fact that she wants Gideon to win against the sharks, too.
Gideon
said, “Mommy, can we hatch butterflies this year for her (I am
omitting her name because I am not sure her parents would be okay
with it)? Can you find out what her favorite name was and we'll name
the prettiest butterfly for her and watch it fly away to heaven?”
I nodded.
He
then said that she loved pink and that he thinks her favorite flower
was the Gerber Daisy. I am not sure where he came up with that
tidbit, maybe the flower reminds him of her, I don't know. He said
he would plant those flowers just for her, and when they are tall
enough and pretty enough, he'd cut them and would like to give them
to her mommy. I told him we could do that...
I
then laid down next to him, and he moved my hand so that it covered
his heart. He said, “Could you just leave your hand right here,
mommy? It hurts right there.” And that's when I let a few
undetected tears fall. Whenever Gideon has a sore leg from
treatment, he wants me to keep my hand on it because it makes it feel
better. Somehow that physical pain is easier to deal with than this
broken heart feeling he was experiencing.
Last
week, in the car and on the way to school, Gideon said two beautiful
things. I wrote down his words, and I think they make sense for me
to add here as a post script.
Gideon:
“Mommy, what color was invented first?”
Me:
“I'm not sure, Gids. What do you think?”
Gideon:
“I think it was either white or black.....Soooo, I think it was
white since that is the color of light, and God is Light, and He was
here first.”
Next
conversation:
Gideon: “Sometimes when I look outside or I am just thinking about nothing at all, I feel God.”
Gideon: “Sometimes when I look outside or I am just thinking about nothing at all, I feel God.”
Me:
“What does that feel like?”
Gideon:
“It feels like God is rubbing my back very, very lightly and then
that feeling is everywhere. Then, it's like he tucks my heart in
with the softest blanket.”
While
I was holding Gideon's heart, I reminded him of those two fresh
conversations, and an instant smile spread across his face. No
matter how unfair, how horrendous, how heartbreaking it is to lose a
child to cancer, Gideon knew he had to find the Light. He found it
in butterflies and gerber daisies.
Wednesday, April 3, 2013
Keep your perspective, little one.
Naive, Pollyanna, blindly optimistic... People will call you those things, Gideon. They will look at your sparkling view of the world around you and peg you as simplistic because you don't let the darkness of life taint or discolor the rainbow reality you choose to live. The truth as experienced through your mommy: They are sadly mistaken. The negative veil that they have pulled over their eyes is nothing but a distraction from what you know matters. They are the ones missing the truth while they smirk at positivity.
I have learned so much from you, my son. Of all of the people I have ever encountered, you brushed with the scariest and darkest of places that even the pessimists fear: death. As the scariest place of our human existence came closer and closer to you, you saw an angel of light instead of black bleakness of the end; thus, you know that the end isn't black, it's light. That light can be felt, lived, experienced here and now. We can bask in it and celebrate it as gifts from heaven. And in that way, heaven can be felt right here and now.
So, here I am: a mommy who learned from her baby what it all should mean. You are not lacking in wisdom, Gideon. You have surpassed wisdom and cradle it in your heart on a daily basis. How you view the world is how you respond to life. You have chosen the light, so you respond to birds, colorful clouds and even band aids with a heavenly awe. You have surpassed wisdom because you know it can not all be known, and learning sheds more light, not less.
While this awe causes you to smile, your eyes light up with questions as you delve deeper into the sound a black-capped chickadee makes compared to the cardinal. You want to know why some turtle shells are soft and others hard. And you ask the difficult questions, too. WHY is there hate? WHY do people think it's okay to be mean? You live in the light while questioning the dark. And as you see and experience moments of darkness, you reach deep inside to find a glimmer of light, no matter how small.
"He must be so sad, mommy," is what you said about a boy in a story we were reading. He was a bully who wanted to demean others to feel more important. As we read, you stopped me. "He is so sad inside and so he wants everyone else to feel just as sad so that he isn't lonely on top of sad." Then I had to stop reading just to look at you with the same awe in which you see God's creations in nature.
How did you get so wise?
I now know. You are beating death and spreading more and more light because of it. When I want to respond to injustice or negativity or angry people with my own dose of angry retorts, I remember not to feed the sadness or bitterness of others, but to respond with light. You are teaching me that, and I still have a long way to go.
In so many ways, Brody and I are kindred spirits with you, Gideon. We both feel the pull of your excitement and revel in the amazement you experience. We all close our eyes when you do as we listen to "beautiful" music together. Hoppipolla is a song we found together during the darkest part of your battle, and we all felt calmness and peace because of it as we whirled around the kitchen together to the beat. Once I found out the meaning of the words, it pulled us all in even more.
Sigur Ros became a part of our battle soundtrack. I was surprised by Alex when he took me to see Sigur Ros in concert this week. You were with your daddy, brother and step-mommy-to-be on Spring Break vacation. I have never felt so emotionally stirred during a live performance in my entire life. As Sigur Ros sang and played his guitar with a violin bow, pictures of innocence and wonder and lights whirled around the stage. And tears kept on falling, sometimes without me even noticing. One song depicted a little boy swimming underwater with fish. He was smiling while swimming, while sharing life with cold blooded creatures so unlike him, but with him at the same time. I was surrounded by the wonder of it all, and I realized that when I do get to heaven, I will request my angels sound like Sigur Ros. Also, I realized no matter how far apart we may be, the light is with us at the same time. The Holy Spirit is good at that -- being everywhere all at once.
I pray you always feel the Life in that Light, Gideon. It is the only way to truly live in the moment, and the moments added together make for a life movie that centers around the goodness and beauty of it all. Even though we are conscious of the dark, we won't let it shade the brilliance that is this life God has blessed us with.
Live out those blessings, little boy. There is nothing uneducated, lacking of knowledge, or idiotic about embracing the wonders around us with a smile and optimism. Shine on, Gideon! It's all about LOVE. All of it.
Saturday, March 30, 2013
Gideon's 6th birthday
Gideon is now SIX. Six! He was diagnosed at the age of three, so now he has been battling cancer for half of his life. He doesn't remember what life was like without this stuff… Without the nightly pills, the pokes, and the sleepy medicine. He sees the clinic as a second home, and the staff there his extended family. He amazes me with the appreciation he has for the goodness around him.
Today we basked in the sunshine and took a nature walk with his bird book he got for his birthday. We spotted birds and listened to the music each one made. Some said, "Drink your tea! Drink your teeeeeeeea!" And others sang, "Cheer up! Cheer up! Cheer up, up, UP!" Just a week ago this boy was battling a fever that didn't want to subside. Finally, after IV antibiotics and oral antibiotics, it was kicked. I wonder all of the time if his immunity will ever go back to normal. If it does, what will that be like? All I know is that his thankfulness in what surrounds him (especially nature) makes me notice the colors around me. Life will never be black and white and ordinary...
Happy BIRTHDAY, my baby boy! I love you.
Monday, March 11, 2013
How Life Works
“This
is how life works sometimes,” is what came out of Gideon's mouth as
he clutched his puke bucket in his lap today. He didn't say it with
remorse or with a whine. It was just matter-of-fact, and it
constricted my heart with thankfulness. The days he does not have to
leave school clutching a bucket in the car are celebrated. When he
is feeling awful, he sees it as a “sometimes” and awaits those
precious feel-good moments as though he is peering into the sky on
the 4th of July, knowing the fireworks are on the way. I
don't deserve to be in the same galaxy as this boy, let alone car.
But here I am.
Thanks,
God, for bringing this soul into my life who I am supposed to shape
and mold, but who shapes and molds me just as much.
That's
where we are right now: coming off of chemo surge week, and he is
feeling the pain. But, he is now sleeping on the couch while his
favorite classical music fills the room. I gave him his new “Cuddle
Bug” stuffed animal from Alex, and he is smashing that love bug in
his arms, and I am actually typing this entry so that I am not
tempted to smash my cuddlebug in my arms. I don't want to wake him.
He
has pain, and a few weeks ago he was plagued by nose bleeds, but...
The end of treatment is in sight (AUGUST!)! Also, I am overly excited about what is to come
with the Cancer Families United (CFU) group. We recently had our
first board meeting, and I was voted in as Vice President. I
am excited and honored as we look forward to the opportunities of not only the help this organization
can provide childhood cancer research, but the support of
families in OUR area fighting this beast. Please LIKE our page on Facebook!
We
recently had a CFU get-together with families battling cancer, and
what this group is doing to heal and help was already apparent. We
bowled, played dodge ball, played air hockey, and even climbed a rock
wall! Brody made friends with a little boy whose sister is battling
cancer. They were bowling on the same team, and this little friend
gave up his turn for his sister to try it, since she was not strong
enough to play a full game. Brody is familiar with bald children and
what it means, and as his new friend sat his turn out, Brody walked
over to him, put his arm around him and I heard him say, “I know
how it feels...having a sister with cancer. My brother has cancer,
too. Sometimes we have to give up our turns for them, but it's going
to be okay.”
Tears.
Make
that two souls I was blessed with who, without fail, remove the film from my eyes
and the unimportant heaviness from my heart. Thank you, God.
And
that is what CFU (now that we are officially a non-profit charity!)
is all about: helping families, entire families, inflicted by the
horrors this disease brings. Those horrors are monetary,
soul-rendering, physically painful for the child, emotionally
scarring for all, and life-changing in so many ways. I witnessed two
children who get it, felt understood, and felt supported in that
instant of empathy (as opposed to the sympathy in which they are
accustomed). This was Mary Kay Pederson's
brainchild, and I am a lucky girl to have her as both a friend and as
a lifetime momma-battler! I am also so blessed to share the table
with Jody Crump as the CFU secretary, and the Benneckes as co-founders. It is amazing to be friends
with other moms and dads who feel it is our life calling to not only see a
cure to childhood cancer, but to surround each family battling with
whatever they need to help in every little bit possible.
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