#ShineMaddiesLight: Day 20 of 30

Thank you, Maddie, for teaching me two critical words for conquering the chaos that is cancer (or any life challenge with an uncertain outcome):

“We’ll See…”

#ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Learn more about the power of “We’ll See,” the incredible meaning behind Maddie’s love for “Soup and Two Surprises”, and how/why to #ShineMaddiesLight, by reading today’s inspirational excerpt from Maddie’s Miracles: A Book of Life (now available in paperback or Kindle on Amazon.com by clicking here).  100% of the net sales proceeds in September will be donated to cancer charities.

If today’s post inspires you, please take a moment to #ShineMaddiesLight and forward along to family and friends!

Soup and Two Surprises

I drove back to Lurie’s Place today around 4:30 p.m. After spending the day with Lily, I headed back for the evening swap with Pammy. Pammy and I are chatting on the phone during my drive down Lake Shore. I can hear Maddie in the background ordering her dinner.

“Mommy, I’ll have soup and two surprises!”

Soup and two surprises.

That might not seem like much to you at first glance. But four months ago, Maddie was not an any surprises kind of girl. From my earlier writings, you may recall that one of the biggest hurdles we envisioned for Maddie was learning to adjust to the constant chaos that comes with cancer. The same child who loved starting her morning listing out what day it was, who was coming, and what we would be doing, was forced into a world where unpredictability reigned supreme. And tonight, the former Queen of Consistency donned her newfound Crown of Chaos. Or shall I say, she swallowed it down in spoonfuls of soul warming soup with her two surprise sides of cantaloupe and green beans.

This didn’t happen over the course of one dinner. Slowly, during the last couple of months, when Pammy would prepare Maddie for the day ahead, Pammy started introducing a new concept. Something so simple yet so complex for a young mind. The concept? Two words:

“We’ll see…”

Watching Maddie learn to understand these two words, and embrace the future unknown embodied in their meaning, has been amazing. And without question, the idea of introducing this mantra of malleability was all Mommy. Surely this was not a discourse decided by a Daddy who digs peanut butter sandwiches day in and day out. Instead, I heard the finished product of Pammy’s lessons firsthand.

“Daddy, we’re going to go to Lurie’s Place, they’ll check my vitamins, and then maybe we’ll sleep over. We’ll see…

 “Daddy, tomorrow we’ll go to the playroom and then after maybe we’ll go home. We’ll see…

 What an amazing concept for a three-year-old child to embrace, especially one originally raised on a steady diet of consistency and predictability. No crying about when we’ll go home. No longing for getting out of Lurie’s Place. No stressing about the uncertainties of each day. Just being at peace with “we’ll see.”

And yet again, we all have something to learn from Maddie. You all know my M.O. at this point. Deputy Daddy. Mr. Peanut Butter Sandwich. Habit and routine is always my dream. Chaos my kryptonite. But let’s face it, we are living in one big mess of We’ll See right now. We don’t know what tomorrow will bring, let alone what post-chemo life has in store. Accepting We’ll See, and being at peace with We’ll See, is the only course to conquering the chaos that is cancer.

Embrace We’ll See. Be We’ll See. Be like Maddie. I think I’m on to a new morning meditative prayer. I have no doubt I’ll never be as successful in this transition as my three-year-old hero. But I can try and start with my next lunch order. Perhaps a peanut butter sandwich and two surprises? We’ll see…

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (https://www.facebook.com/scottphillipkramer)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this post to family and friends.  No matter how you do it, just keep shining!

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#ShineMaddiesLight: Day 19 of 30

Thank you, Maddie, for teaching me that growth is not just measured in inches.  For Maddie, her physical size was dwarfed by her miles and miles of spirit.

#ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Learn more about Maddie’s growth, and how/why to #ShineMaddiesLight, by reading today’s inspirational excerpt from Maddie’s Miracles: A Book of Life (now available in paperback or Kindle on Amazon.com by clicking here).  100% of the net sales proceeds in September will be donated to cancer charities.

Help #ShineMaddiesLight continue to grow by forwarding this post along to family and friends and read the excerpt below!

Maddie and the Amazing Half-Inch

Today was a day of growth. We arrived at Lurie’s Place this morning for Maddie’s second to last weekly chemo treatment (quick, weekly “pushes” of chemo into her central line). After next week, she’ll receive treatment every three weeks or so. We knew this coming into today. What we didn’t know was that there was some “bigger” news in store. Maddie entered the clinic floor…wait for it…a half an inch taller.

I know what you’re thinking. A half an inch? Call off The Guinness Book of World Records press conference. But hey, height doesn’t exactly grow on this vertically challenged branch of the family tree, so celebrate we will. Just as exciting, it’s the first sign of physical growth for Maddie since she started chemo. After stalling at three foot nothing for months, Maddie sported this surprise half-inch boost during her pre-chemo screening. Chemo literally can’t keep Maddie down.

The development packed into that half-inch is almost unthinkable. In a matter of months, Maddie has experienced more trauma and challenge than most of us ever will in our entire lives. Today was another reminder of how far Maddie has come since we first set foot in the hospital. The contrast is black and white. And that contrast came to a complete head (or more accurately, a spine and a head), as Maddie and I strolled past the hallway meeting room on the Lurie’s Place outpatient clinic floor. While walking by, I couldn’t help but notice a black-and-white image magnified on the projection screen (clearly the subject of some previous medical team meeting). I would know that image anywhere. I hadn’t seen it live since the early hours of April 21st, but it’s etched into my memory. Carved into my heart. There was no mistaking the picture. The familiar outline of a skull. The slightly curved spine. With a grey blob embedded in the spinal cord.

I reacted quickly and positively: “Look Maddie, it’s your X-ray!” I said (Doc McStuffins hasn’t covered MRIs yet). She stared in amazement. As did I. Just for obviously different reasons. On April 21st, I feared that black-and-white picture might be the last I saw of Maddie. That all of her brightness would be reduced to that god-awful photo. And yet here we were, April 21st Maddie and August 22nd Maddie face to face. Only one of these faces was now a half an inch taller. And smiling brightly back at the digital memory of her former self.

That says it all, doesn’t it? A picture worth well more than a thousand words. Because thankfully August 22nd Maddie is not just a picture. She’s a daughter. A sister. A granddaughter. A niece. A cousin. A friend. A hero. A miracle.

Our miracle.

There is nothing black and white about this little girl except maybe her exuberance. Just ask the Lurie staff. As all other patients wait quietly in their rooms for the doctor, there’s one three-foot-and-a-half-an-inch toddler bouncing around the hallways. She’s pointing out the different animal pictures on the wall. She’s waving to all of the nurses. She’s dancing to Beatles songs streaming on the iPad. She’s requesting the “pink house” from the playroom. She’s doing her “work” on the nursing station computer. She’s reminding everyone that she’s on the “Kitty Floor” (yes, it turns out there is a picture of a kitty near the elevators). Most importantly, four months later, from April 21st to August 22nd, she’s still smiling. She’s still growing. She’s still being Maddie.

A half an inch never felt so huge.

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (https://www.facebook.com/scottphillipkramer)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this post to family and friends.  No matter how you do it, just keep shining!

#ShineMaddiesLight: Day 18 of 30

Thank you, Maddie, for teaching me the importance of coming back to one simple question in order to stay focused in the face of adversity: “What’s next?”

#ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Learn more about this special message from Maddie, and how/why to #ShineMaddiesLight, by reading today’s inspirational excerpt from Maddie’s Miracles: A Book of Life (now available in paperback or Kindle on Amazon.com by clicking here).  100% of the net sales proceeds in September will be donated to cancer charities.

What’s next?  Please forward this post along to family and friends and read the excerpt below!

What’s Next?

Attention span has never quite been Maddie’s strongest trait. To this day, one of my favorite memories of Maddie is her time in music class. B.C., Pammy and I enrolled Maddie in music class up to three days per week. Partly because she loved it. And partly because it was just something to break up the day (don’t be ashamed to admit it, parents).

While Maddie loved these classes, let’s just say sitting patiently and clapping calmly to the beat wasn’t her jam. Instead, the more common scene would be a room full of children sitting nicely in a circle and clapping and singing along with the teacher, and a little, curly-haired girl running in circles around the circle as fast as she could.

Maddie never stopped moving. In music and in life, her mind and body just kept going. And so a few minutes into these thirty-minute classes, or frankly any activity between the ages of 12-24 months, Maddie’s most common mid-activity refrain would be:

“What’s Next?”

I can still hear her in my head. It cracked me up each time. Except maybe when the invoice came for 12 thirty-minute music sessions of which Maddie maybe focused for 5 minutes per session. As Mega Treatment IV now comes to a close, we find ourselves asking the same question:

“What’s Next?”

Make no mistake, we still have a very long treatment road ahead. This journey is far from over. Altogether, Maddie has 13 inpatient chemo cycles remaining over the next 42 weeks (assuming no delays), and we don’t expect any to be cake walks. So, you ask, what made the Megas mega? Why the build up? What have we all been rooting for this entire time?

Undoubtedly, there are still Mega benefits that come with putting Mega IV in our rearview mirror. For one, there are two chemo drugs, one of which is particularly brutal from a side effect perspective, that Maddie is not scheduled to see ever again. Sayonara, Cisplatin! You will not be missed. Do not expect a thank you card.

Just as exciting, starting in three weeks, Maddie no longer has to visit Lurie’s Place for “mini treatments” every week. Instead, she’ll be limited to tri-weekly chemo treatments.

But in truth, I think the Mega-ist benefit of moving on from Mega IV is our collective metamorphosis that has progressed with each stay. Looking back at my writings from 45-60 days ago, it’s like reading the words of a former self. The pain was so palpable. Each chapter written with equal parts hurt and love with a pinch of hope. With Mega IV behind us, I now write with an added ingredient. An ingredient that I’ve felt building with each day:

Acceptance.

To be honest, I’m slowly realizing that this mentality shift was the biggest reason that the doctors focused on these first four Mega Treatments. As I’ve said before, you have to break it down to avoid breaking down. And that’s what the doctors did for us by focusing on these first four treatments. They broke it down. Because the bigger picture of life A.C., and Maddie’s treatment course, is unimaginably daunting. If we spent every morning dwelling on the volume of challenges we have remaining, we wouldn’t be able to make it to noon. The amount of hospital stays is still too numerous to count. Nausea and needle-filled nights appear endless. And of course, The Great Unknown for what the ultimate future looks like is always hovering.

You have to break it down to avoid breaking down. And that’s why we have Maddie. Our Mini Monk on this marathon we’re marching through. Reminding us that there’s only one question today. Only one question right now.

What’s Next?

What’s immediately next?

And next to me as I contemplate what’s next is still the cutest, most precious girl I know. Clutching a little Baloo character that she borrowed from the 17th Floor Playroom. What’s next is we get to go home together today. What’s next is we get to celebrate the major accomplishment of powering through these first four Mega Treatments. Of seeing Maddie transition from Fear to Fantastic. What’s next is we get to sleep in our own beds. What’s next is we get to hang with Lily Poo. What’s next is we get to play in our own playroom for the next 7-10 days. What’s next is we get to continue to watch in awe of Maddie’s strength.

Just like her days in music class, what’s next is that Maddie keeps moving. Only with a Mega notch under her belt.

IMG-5321 (1)IMG-7919

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (https://www.facebook.com/scottphillipkramer)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this post to family and friends.  No matter how you do it, just keep shining!

#ShineMaddiesLight: Day 17 of 30

Thank you, Lily (we didn’t forget about you, Lily Bug!), for teaching me that the brightest flowers only grow more colorful from the storm.

#ShineMaddiesLight #MaddiesMiracles #TeamMaddie #LilyBug

Learn more about the Miracle of Lily, and how/why to #ShineMaddiesLight, by reading today’s inspirational excerpt from Maddie’s Miracles: A Book of Life (now available in paperback or Kindle on Amazon.com by clicking here).  100% of the net sales proceeds in September will be donated to cancer charities.

In honor of the little Miracles in your life, please forward this post along to family and friends!

The Miracle of Lily

In these pages and pages of writings, there’s an untold story. An untold story who goes by the name of Lily. A fitting name for our little bright flower born briefly before this unspeakable storm.

Lily came into this world on February 13, 2017. Just two months B.C. The timing of her birth continues to astound me. Arriving in this beautiful and narrow window of life that allowed us to bask in her newborn sunshine.

Imagine if Lily were born just a bit later. The thought of Pammy being mid-pregnancy while coping with Maddie’s diagnosis. The thought of Pammy being in the hospital at the same time as Maddie.

I’ve also imagined if Pammy had not yet become pregnant. It’s safe to say that having another child wouldn’t exactly be on our to do list at the moment.

For Pammy and me, the timing of Lily’s birth, in my heart of hearts, is another miracle to celebrate. Another positive place to point when posited the ever-present, “Why Us?”

While Lily arrived with a whimper on February 13th, the moment she came home from the hospital, that whimper quickly crashed into a bone-chilling scream. I can still picture the look on our night nurse’s face the evening we parted ways (yes, Lily drove away a paid night nurse who had been allegedly baby whispering for decades). The woman looked up at me, sleep deprived and defeated, in her deep Jamaican voice: “I don’t know what da hell to do with dis baby!”

Welcome to the world, Lily.

Looking back, I sometimes wonder if Lily knew what was coming. If she was trying to tell us something. Bellowing the pain we’d all soon feel. I still vividly remember chatting with Pammy during our sleepless B.C. nightshifts, as we’d try to motivate one another to wake up and calm Lily’s colicky crying chorus. “May this be the worst thing we have to experience,” we’d say.

Unfortunately, Lily’s screams didn’t lie. Before we could even wipe the newborn glow off our faces (or wash away the newborn bags under our eyes), before Maddie could even adjust to what it meant to be a big sister, we echoed Lily’s painful cries from an MRI waiting room.

And yet just as miraculous, no sooner did we get through Maddie’s miraculous recovery from surgery than did Lily become the calmest, smiliest, happiest, and yes even nighttime sleepiest, baby on the block. As if we hadn’t already entered the twilight zone, Lily went from her nightly reenactment of The Exorcist to a welcomed portrayal of Sleeping Beauty.

I’m convinced that Lily’s transformation was not a coincidence. That Lily is here for a reason. That Lily is our untold miracle. While I still haven’t ruled out an alternate genetic source for this blond-haired blue-eyed bundle of baby rolls, she is undoubtedly a product of love. Without exaggeration, Lily is a literal smile machine. A human doll skilled at mirroring back the love thrown her way. If you look at Lily and so much as grin, you’ll immediately get back a full-blown chubby-cheeked, open-mouth smile that – for one brief second – makes you forget every ounce of sorrow in this A.C. World.

Coincidence or not, we are blessed for Lily’s presence. We are blessed for her perpetual joy. Because no matter how difficult any particular moment might be, we can’t resist that smile. It’s the smile of innocence. The smile of joy. The smile of hope. The smile of another miracle keeping her family moving forward.

Lillian Zelda, never underestimate your role in this journey. Even when we couldn’t be there for you, you were there for us. Plus, I hear the brightest flowers love a good rainstorm. And words can’t do justice to your exuberance. Happy Six Month Birthday, Lily Bug.

IMG-7914

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (https://www.facebook.com/scottphillipkramer)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this post to family and friends.  No matter how you do it, just keep shining!

#ShineMaddiesLight: Day 16 of 30

Thank you, Maddie, for teaching me that the title to the First Dance song from Mommy and Daddy’s wedding is timeless.  In sickness and in health, these words will always ring true: Don’t Stop Believin’.

#ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Don’t Stop Believin’ in the power of #ShineMaddiesLight and read today’s excerpt from Maddie’s Miracles: A Book of Life (now available in paperback or Kindle on Amazon.com by clicking here).  100% of the net sales proceeds in September will be donated to cancer charities.

If you never stop believing in the the possibility of a brighter day for pediatric cancer patients, please forward this post along to family and friends!  

Don’t Stop Believin’

Seven years ago today, Pammy and I circled one another seven times before entering the warmth of a shared tallis under a sheltering chuppah. Following our wedding ceremony, we stepped onto the Temple Beth Sholom dance floor together surrounded by our closest family and friends. After the band announced the entrance of Mr. and Mrs. Kramer for the first time, they jumped right into our First Dance song…

Journey’s Don’t Stop Believin’.

If Pammy and I were to each list out places where we felt most comfortable, I can safely say that the dance floor wouldn’t have cracked the top ten. But there we were, our family and friends cheering us on, as we dutifully tracked our pre-wedding ballroom dancing instructions through this classic ’80s rock anthem. Step by step. Dancing our way into marriage.

In some ways, the beginning of our married life is just the yin to the yang we now face. But the Journey we’re on now is our Journey. And while Pammy and I are in the middle of this A.C. dance floor, there’s a new, cuter star of the unwelcomed show dancing her way through. Our family and friends are still surrounding us. Willing us to keep going. Enveloping us with the same love and support albeit on a much colder floor.

But the theme is the same. We are taking this Journey step by step. Move by move. And the chorus has never been packed with more meaning.

Don’t Stop Believin’.

 I’ll say it again.

Don’t Stop Believin’.

With Maddie by our side (or more accurately, with Maddie leading the way with unparalleled strength), we will not stop believing. We will not fade to black. We will hold on to that feeling.

That feeling that anything is possible. That feeling that a two-and-a-half-year-old girl can have her life flipped upside down. Lose her ability to so much as stand. And yet come out the other side dancing like nobody’s watching. That feeling that two parents, who met randomly as seniors at the Brown Jug in Ann Arbor, Michigan, could crumble into each other’s arms in an MRI waiting room only to rise as one and hold each other up again. To become the strongest parents for the strongest little girl. That feeling of fostering a loving home. That feeling of building a family. That feeling of being Team Maddie.

When you take your vows, in sickness and in health, no one pictures this moment. No one can prepare you for this challenge. But here we are. And I couldn’t have a more perfect dance partner in Pammy. While I may be the voice for you all into our Journey, Pammy is the one who is really leading the way. She is Maddie’s guide. Her maestro. Her rock.

And I am a blessed husband.

August 1, 2010. To August 1, 2017. Seven circles. To seven years. Happy Anniversary, Pammy. Don’t stop believin’…

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (look for the Maddie’s Miracles background picture)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this post to family and friends.  No matter how you do it, just keep shining!

#ShineMaddiesLight: Day 15 of 30

Thank you, Maddie, for teaching me the transformative power of being aware.

As you read today’s inspirational excerpt below from Maddie’s Miracles: A Book of Life, remember that only from Awareness can real change form.  In honor of the thousands of lives touched by childhood cancer every year, and in honor of the blinding light that our heroes bring to their battles with the darkest of diseases, join us today as we Unite to Shine Light.

#ShineMaddiesLight #WeAreAware

To Shine Maddie’s Light in honor of Childhood Cancer Awareness Month, forward this post along to family and friends today.  100% of the net sales proceeds for Maddie’s Miracles: A Book of Life (now available on Amazon.com by clicking here) during September will be donated to cancer charities.

We Are Aware

September is Childhood Cancer Awareness Month. I can tell you what my awareness would have looked like in September 2016 B.C. One year ago, I may have noticed when a White Sox player donned yellow wristbands to honor the occasion. Or perhaps catch a moving Facebook post. That would have been the extent of my awareness, and I would have gone on with my day-to-day routines. In September 2017, awareness is the least of my issues. I am all too aware. Every month is cancer awareness month. Every day. Every hour. Every minute.

I am now acutely aware of the absolute crippling characteristics of childhood cancer. I am aware of what it is like for your life to change in the blink of an eye (or worse yet, a collapse on a triage scale). I am aware of how it feels to spend six straight hours pacing without pause on a hospital waiting room floor not knowing if I would ever hear the sweetest voice in the world again. I am aware of the debilitating pain. I am aware of the darkest of fears. I am aware of the helplessness.

But I am also aware of resilience. I am aware of the strength of the human spirit. I am aware of the gift of innocence. I am aware of the power of imagination. I am aware of what it means to take every ounce of pain that could be pummeling your pounding heart and instead propelling that pain into positive purpose. I am aware of feeling blessed in a time when you may otherwise be tempted to curse the world. I am aware of all-consuming love. I am aware of hope. I am aware of daily miracles.

And perhaps most importantly in this Childhood Cancer Awareness Month, I am aware that we are not alone. While Maddie’s experience may be – with limited exceptions – our only glimpse into the world of childhood cancer, this is sadly not a story just for me to tell. We do not have a monopoly on pain. We do not have exclusive rights to hope. The beds at Lurie’s Place are literally overflowing with pediatric cancer patients. And that same scene is playing out across the country. Each and every one of these families has a story to tell. Their triage moment. Their inspirations. Their blessings. I am aware that we are nothing more than a window into that world. And that we are blessed with a daughter whose unparalleled spirit offers a glimpse into every reason to stay aware of childhood cancer. She is Miracle Maddie. The girl who jokes through the baby pokes. The girl who smiles through the medicine vials. The girl who is dancing while cancering.

And while I know at this point you are all aware of Maddie, and you are aware of our journey, please also be aware of what a precious piece you are in the childhood cancer puzzle. Be aware that you have made – and you can continue to make – a difference. Be aware that you don’t need to suffer in order to support. Be aware that being a supportive friend, co-worker, family member, or even stranger is one of the biggest blessings you have provided us on this journey. Whether in a text message, a donation, a meal, a phone call, a gift, a card, a visit, a private evening prayer, or even just keeping up with Maddie’s journey, we are aware of what a difference you’ve each made in our lives.

We are aware of you. We are aware of gratitude. And we are aware of the transformative power of remaining aware.

WeAreAwareII

 

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (look for the Maddie’s Miracles background picture)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this to anyone in your life who would appreciate a dose of inspiration.  No matter how you do it, just keep shining!

#ShineMaddiesLight: Day 14 of 30

Thank you, Maddie, for teaching me the true mark of reaching the other side of the emotional mountain that is trauma: learning to live side-by-side with sadness as opposed to being subsumed by sadness.

#ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Read more about this special lesson by reading today’s excerpt from Maddie’s Miracles: A Book of Life (full version now available on Amazon.com by clicking here).  100% of the net sales proceeds in September will be donated to cancer charities.

To Shine Maddie’s Light in honor of Childhood Cancer Awareness Month today, forward this post along to anyone in your life who has climbed to the other side of the trauma mountain and ask them to do the same!  

The Other Side of the (Mega Treatment) Mountain

Maddie returned home this morning from her inpatient stay for Mega Treatment III. Just as her return to Shirley Ryan marked a moment of reflection, the view from the other side of the Mega Treatment Mountain is just as impressive. At this point, it’s not just the vantage point of the Mega Treatments that’s altered. We are altered.

On a moment’s notice, I can look back at my former self on the former side of this mountain. Every painful scene is etched into my memory. Maddie’s legs buckling under her on the scale in triage on April 20th. The Neurology Fellow incapable of getting the words out to describe what she saw on Maddie’s MRI, and instead wrapping her hands around her neck to visually exhibit the location of the growth. Maddie laying helpless, unconscious, and intubated before being taken away for pre-op. Pacing the halls for the 6-plus hours of her surgery. Praying to see that smile just one more time. My first steps onto 17th Floor. The first chemo drip. The pain. The hurt. The darkness.

These snippets of sadness are all still at my fingertips. At the edge of my throat. Capable of a convulsive trigger with the right (or wrong) conversation.

But on the other side of the mountain, what’s disappeared is the rawness. The helplessness. The feeling that the mountain of Cancer is bigger than us. And while the other side of the mountain may not be “all that we can see,” it is primarily what we feel. We feel the momentum of our progress. We feel the gratitude for Maddie’s progress. We feel the pride of being Maddie’s parents.

That’s not to say that the sadness is gone. Every single day is truly an immense blessing with an equally large asterisk hovering over it. Sometimes that asterisk brings tears. Sometimes it brings anger. Sometimes confusion. But in no case does it reach the all-consuming levels that came with our first steps onto the mountain.

Instead, we now just live with the sadness. Side by side with sadness as opposed to being subsumed by sadness. There’s even an oddly inherent connection between that ever-present stream of sadness and the immense blessing I feel for every day. Almost as if you can’t have one without the other.

Pammy said to me the other day, “You know, in many ways this is the most special time in our lives.” What an insane statement. And yet, it’s true. Here we are. Being choked by the sourest lemon that life has to offer. And at the same time, we are still capable of being consumed by the sweetness that is Maddie. The connection that Pammy and I each have with Maddie at this moment, and the intensity of the emotion flowing in all directions, is overpowering. And so unbelievably inspiring and fulfilling.

So as Maddie returns home tonight from Mega Treatment III and lays on her freshly-washed Minnie Mouse sheets, I am taking a moment to smile. Yes, I recognize that while we scale down this edge of the Mega Treatment Mountain there is undoubtedly another equally dramatic peak awaiting our battle-tested legs. But for today, I stand in awe of the view. And what more beautiful of a focal point than our sweet little Maddie. I love you, kiddo.

 

________

New to #ShineMaddiesLight?  See the Details Below!

Buy the Book for a Charitable Cause:

https://www.amazon.com/dp/1980914176/

100% of the net sale proceeds during Childhood Cancer Awareness Month will be donated to cancer charities.

Learn More About #ShineMaddiesLight:

https://maddiesmiracles.wordpress.com/2018/08/08/labor-of-love/

Follow Me On All Social Media Channels:

  • @spkramer82 on Twitter and Instagram
  • Friend Me on Facebook (look for the Maddie’s Miracles background picture)
  • Follow this blog by entering in your email address in the “Follow Me” box that appears in the lower righthand corner of your browser.

#ShineMaddiesLight:

For each and every day of September, we invite you to post on all major social media platforms (Instagram, Facebook, Twitter, LinkedIn) a message that tells your friends and followers about the inspirational lesson that Maddie taught you.  Some basic guidelines:

  • To keep Team Maddie’s inspirational message flowing as one, include our signature hashtags in your posts: #ShineMaddiesLight #MaddiesMiracles #TeamMaddie.
  • To raise awareness, include a photo of you holding the paperback book cover and/or a link to this blog.
  • Here’s an example:

Thank you, Maddie, for teaching me [insert inspirational lesson]. #ShineMaddiesLight #MaddiesMiracles #TeamMaddie

Please follow Maddie’s blog (https://maddiesmiracles.wordpress.com/) and buy the book to donate to cancer charities (https://www.amazon.com/dp/1980914176/)

Don’t have social media?  Just e-mail this to anyone in your life who can derive inspiration.  No matter how you do it, just keep shining!