Celebrate Ten Years in Remission!

Ten Years Since the last Day of Chemo

Celebrate!

Ten years since the last day of chemotherapy. Celebrate!

Today is big!  Huge!  Today we celebrate one of those milestones you never expect to even think about with your children.  Once thought of, however, the prayer that you’ll ‘make it’ is a never-ending process-type prayer!  That prayer for remission and the end of chemotherapy!

Ten years ago, my seven-year-old had his last day of chemotherapy.  It was not the last day of dealing with cancer, by any stretch, but it was the end of three and a half years of at least one chemo appointment every week, the setting aside of lengthy hospital stays and the termination of inserting horrific drugs into a little body.  Hair grew back, skin returned to healthy pink, stomach aches receded and this mom began the process of adjusting to a new normal.  My son began the process of learning to deal with the things the physicians call the “price of survival” from a catastrophic illness.

I will never forget that day.  Our whole family went to the last day of chemo.  We sat through the last drip and flushed the port for the last time  (port removal was later in the month, but we never had to access it again).

I wanted to celebrate.

We needed a huge, knock-out party.  Our family should do something fabulous.  A plane toting a giant banner.  A fireworks display.  A party with huge balloons and lots of happy shouts and singing.  A prayer-of-thanks-meeting in our church. But that takes energy – and mine had all been sucked up in the fight for life.

Instead, our battered family sat quietly together in the hospital, while Andrew cried because he wouldn’t be coming back the next week for his time with those wonderful nurses.  We watched Dora the Explorer with him, as usual, and we all ate the breakfast burrito that usually followed his early morning chemotherapy sessions.  Andrew made his round of the nurses with a very small token of our appreciation and we waved our way out the locked door of the hospital.

The longest, most painful process of our lives was over.

There was no parking lot party.  The world went about their day much as they had the day that Andrew was diagnosed with leukemia.  I wanted to shout at the passing cars, “Hey!  Don’t you see this is a big day here?”

Big.  Huge. Gigantic.

Our God got us through chemotherapy.  Cancer lost.  Sure, the doctors reminded us that the remission might or might not hold.  Of course, my boy faces a lifetime of cancer checks.   It’s a given that physical therapy for abused muscles and coordination followed.

But, for that day, the battle was won!  God carried us through.

Praise God for the end of #chemotherapy! Praise Him in the Storm! #cancercaregiving #childhoodcancer Click To Tweet

Celebrate.

We walked to our car, each quietly contemplating, in our own ways, the grandiose and loud thing that was so quietly happening.

Randy unlocked the car door and the girls climbed into the back.  Andrew stood there, looking at the playground outside the hospital.  “I wanna play on the slide,” he announced.

We all began to laugh and the girls popped back out of the car with relief.

Celebrate!

No germ phobias any more!  If Andrew wanted to be outside, he could be!  We didn’t have to wear masks!  Ever single one of us climbed up the playground equipment and went down the slide.  We played hot-lava-monster and raced around, kicking up frozen bark chips with our joyous steps.  The cold air pinkened our cheeks and the foggy air bounced our laughter back at us.  I ran to the car and took out my camera.  My gang piled up on the slide for a picture.

Andrew was done with leukemia.  Andrew was done with cancer.

Praise God!

So today I repeat: Praise God.  It has been ten years since that day our family celebrated all alone in that cold playground.  Ten years since God handed us a miracle and waited to see what we would do with that gift.

My boy is a senior in high school.

Ten years of remission.

120 months to recover from three tough years.

520 weeks without chemotherapy.

3,650 days without cancer.

From then to now – 10 years to celebrate!

Praise God and Celebrate!  His love endures forever!

Celebrating 10 years since chemotherapy! #leukemia #cancer #chemotherapy Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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The Difference Hair Can Make

When the beauty of love shines through the ugly of cancer

The difference that hair can make…

A bright red ponytail and flying blond hair edged around the corner of room number 11 in the Children’s Cancer ward.  Wide-eyes greeted me as my two precious little girls tip-toed over to where I perched on the parent chair/bed/sofa/storage unit.  I hadn’t seen them for over a week: the same week we all adjusted to our youngest having Leukemia.  The first week I’d ever spent apart from both girls.  I expected questions about Andrew – his diagnosis, his prognosis or the tubes running into his body while he slept heavily.  They stared at him in silence and cuddled deeper into my sides.

“Mommy,” whispered one, “we walked past rooms…”

The other added, “Mom – the children were bald!  All of them.  Will Andrew be bald?”

I nodded.

Bald wasn’t my major concern – life and death took precedence.

Later in the evening, after piling onto Andrew’s bed and reading stories, pulling him around the cancer ward in the sanitized red wagon and getting a lesson on the “pokes” that had become Andrew’s routine, both girls again asked questions.

They asked about blood, pokes, the masks we’d have to wear and tests.  Then they asked if Andrew was going to get well.

Then the girls returned to the subject of all the bald children they’d seen throughout the afternoon.  My girls had such thick, long hair –  one was bright red hair and the other with blond streaks.  They kept fiddling with with their hair as they recalled the little bald girl next door.  Larissa whispered, “Mommy.  No one should have to be bald…if they don’t want to be.”

That thought stuck in my oldest child’s head and somehow, by the time Andrew and I were able to come home from the hospital a month later, both girls had determined to grow their hair out as long as possible.  They had heard of something called Locks of Love” and were determined to donate.  I explained that those wigs were not necessarily for children with cancer, but for children who couldn’t grow hair long-term.  Both girls could care less WHY the children were without hair – they just wanted to help them.

A favorite picture of mine: Larissa’s hair donation #2 and Karina #1.

Having fun and messing around with that long red hair, before cutting it off!

This thanksgiving my “girls” came home from college.  The oldest is a senior pre-med student in the mid-west and the middle “child” is a sophomore engineering major in the northwest.  They both have long, beautiful hair – despite three hair donations over the years.    Friday, before heading back to school, Larissa insisted on a hair cut  – a short one (relatively).  I suggested not cutting it so drastically, as she’s had long hair for years.

“Go big or go home!” Larissa declared, “As long as I’m donating, let’s donate a lot!”

15 inches.

That brings Larissa’s total hair donation to well over 35 inches of hair over the years.

I told her she could sell this batch – after all, she’s a struggling college student.  Rolled eyes and a shrug reminded me that she didn’t do this just for the shock of a dramatic change in looks (although she’s having a blast with that too).

Long ago, in a children’s hospital, Larissa’s heart was changed by challenges strangers faced.  She saw a need and did what she could.  I’ve often wondered if that’s also where her desire to be a doctor has come from – helping strangers face challenges.

Cancer is ugly.  Horrible. Awful.  It changes people’s lives.

Every once in a while, those changes are for good.  I’m so thankful for the beauty from God that shines through the ugly of sin.

When the beauty of love shines through the ugly of #cancer #locksoflove #childhoodcancer Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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The Blood and the PTSD

What Jesus can do with one - for the other.

I ran frantically through the house, sweat dripping down my back and my eyes wide open with that familiar gritty I’ve-spent-all-night-awake-in-the-hospital-feeling.

I grabbed things and flung them into suitcases and yelled again for my kids to get out! No one answered and I redoubled my efforts. Piles of laundry gave way to my kick and I grabbed my son’s favorite jammies and thrust them into the outside pocke of his hospital suitcase. But this was not about hospitals. It was about life or death. Something was fast approaching our house and I dashed through the kitchen with it’s pile of dirty dishes and stack of mail to sort through.

I peered through the dirty windows and screamed, “Run! Get out, everyone’s got to get out!” Again, no one replied. “Andrew!” I screeched at the top of my lungs. I knew he wouldn’t be able to get out of the house in time, he was slow from his chemo treatments and I searched frantically for his bald head in the house.

My breath seared my lungs as I gasped and raced down the hall to the girls’ room. “Larissa, Karina!” I shrieked with everything in me, but only silence greeted my calls. My breath sobbed out my throat as I raced into my own room. “Randy!” I screamed with everything I had in me, shaking uncontrollably I looked under the bed and raced to the closet, yanking everything out in my search.

I could feel the flood reaching the house and I could smell it surrounding the house and still I had not successfully gotten my family out. As I backed out of my bedroom, whimpering in dismay, my feet sloshed through the deluge sweeping into our house. I fought my way back down the hall only to see with dismay that the front door had been swept open by the flood and the warm, thick liquid poured into our house. As it swept around my knees I staggered under the weight and the swirling red mass, “Help me!” I screamed with every fiber of my being. “Someone help me get my family to safety!” I have never worked harder in my life – not for rescue, nor safety, nor love. Where was God? Why was this blood overtaking our house and why could I not rescue my family?

I screamed again – the strongest most horrific screech of fear – it echoed and bounced into the silent, blood-filled night.

“Carol!” my husband’s warm hand found my frozen and trembling one and I grasped it like a life-line. “Carol,” Randy’s drowsy voice barely penetrated my fear, “everyone’s okay. The girls are in bed, Andrew is asleep. Nothing’s coming in the house. We’re okay.”

I stared at the ceiling in confusion. I could hear no sounds of an approaching flood and the room was dark with a sliver of moon showing out the window. My heart pounded in my chest but my feet were dry and no smell of blood hovered in the air. I clutched his hand tighter and looked at my bedside clock.

2:00 a.m. My most hated hours of the night. Either I was wide-awake or dreaming awful things – neither option was a good one for me.

“Was I screaming?” I asked, pulling his hand closer still.

“Just once.” he responded, already drifting back out, used to my nightmares and my sleeplessness.

“Is Andrew okay?” I persisted. My mind knew, without a doubt, that something was wrong. My heart-rate warned of imminent threat and my brain told me it was Andrew.

“Andrew’s fine. I just checked. No fever. Carol, go to sleep. Everything is fine.”

Everything is NOT fine. I must be dying. That’s it. I’m going crazy and I’m going to die from it. Oh boy – here goes my cycle.

With that I got up and went outside, to sit with my dog in the moonlight, pouring out my need to the God of the stars. My doctor said PTSD. I said crazy. My husband said I’d get through it.

Blood.

Really? Blood overtaking our house and flooding us out? It doesn’t take a genius to interpret my dream.

Almost three years of fighting leukemia with spinal taps, blood transfusions, plasma donations, platelet cells and the constant need for blood counts explained the dream. Almost three years of trying to let my girls live a “normal” life while juggling hospitals and treatments, work and housekeeping made the out-of-control feeling in the dream an obvious choice.

I sat on my back deck, my dog huddled at my side, staring at the moon and unconsciously I began to hum the closing-the-worship song that we sang every Vespers at the school where I taught.

When floods overwhelm us (even when it’s PTSD and in our minds), Jesus blood can get us through.

I smiled at the moon. Blood had taken over our lives, enough to permeate my dreams. Worry threatened me in constant over-loads. My feelings of inadequacy flooded me often. I sighed again.

Yes, Jesus, let the blood overtake me.

Let it wash over me.

Allow it to reach the highest mountain, and flow to the lowest valley!

Permit that blood to give me strength to soothe my doubts and calm my fears

Please Lord, dry my tears.

Let the blood give me strength, from day to day, and never, never, never lose it’s power!

Feelings of inadequacy during #caregiving almost overwhelmed - until Jesus' blood... #blessedbutstressed #caregiverstress Click To Tweet

Take a moment and listen to this song – it’s so incredibly powerful!  Then, leave a comment and link up if you’d like!  We love to hear from you.

 

 

 

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Angels and Lifeguards: What a Caregiver Needs

When You're Drowning, There Is Hope!

Lifeguards: Angels in human skin who recognize signs of struggle in another person.

In this third part of our series on Drowning in Plain Sight, we salute those ‘lifeguards’ and ‘guardian angels’ who recognize a caregiver’s silent struggle in the waters of caregiving despair.

“Drowning people cannot wave for help. Nature instinctively forces them to extend their arms laterally and press down on the water’s surface. Pressing down on the surface of the water permits drowning people to leverage their bodies so they can lift their mouths out of the water to breathe.” On Scene, The Journal of U.S. Coast Guard Search and Rescue

The engine shuddered to stop and I hunched for a moment over the steering wheel.

I could see the family room light while the rest of the house was dark. That meant that Randy had been detained again, and the girls were home alone. I closed my eyes with relief that we live in such a safe place, with staff for neighbors and Randy’s office window shining its light across the parking lot. Fifteen hours ago Andrew and I had left home in the pre-dawn hours. Since then, Andrew had suffered through anesthesia, spinal tapping, recovery, chemo, and blood draws before the long drive home. The darkness magnified our exhaustion and reminded us that suppertime had come and gone.

I reached back and laid a hand on Andrew’s bony little knee and shook gently. “Wake up, little man, we’re home.” Oh, that didn’t sound very cheerful. It just sounded tired. I scraped energy from the bottom of my soul, shifted in my seat and tried again, “Let’s go in the house, Drew, we gotta get supper!”

“Not hungwy,” he grumped from the car seat.

“I know,” I sighed. Who would be hungry after all the things that had filled his little body today?

I slumped up the sidewalk, towing the chemo laden little boy after me.

Supper was the last thing I wanted to tackle, but I straightened my shoulders and mentally gave myself a shake. From somewhere I needed to dredge the energy to ask the girls about their day, to fix something nutritious, to read to them and tuck them into bed.

I twisted the handle and the door swung open. As I opened my mouth to call out to the girls, a wonderful aroma swept across my consciousness. Food! Someone had brought a casserole! Bless that someone!

“Hello Larissa! Hey Karina! We’re home!” I yelled.

Two sets of footsteps pounded around the corner and two happy girls bounced into us where we stood rooted in the entryway. “Mommy, Grammy brought us food! Everything! You can’t believe it!” shouted Karina while she hugged me hard.

“She said you didn’t need to think at all, just eat,” added Larissa, her arms wrapped around my neck.

I smiled with guilty remembrance. Last week, after the same kind of chemo day, Grammy had been at our house when we got home. She’d brought a casserole from a church friend and I was ever so grateful. But within a few moments, her gentle hands had pried mine from the refrigerator handle, where they had frozen in indecision. “Carol, you’ve been staring in the fridge for awhile now, what are you looking for? Can I get something for you?”

At that I had burst into tears, “I don’t know what I’m looking for, I don’t know what goes with this casserole, I don’t know what kind of vegetable to make, I don’t know what kind of anything to get. I just don’t know….”

Grammy had smiled, led me to the kitchen stool, left me there and gotten out salad dressing and salad fixings. Now why couldn’t I have thought of that?

I had explained to her the phenomenon of chemo brain,

how it can affect your ability to think at the oddest moments, and how while I never received any chemo whatsoever, I still got a hefty case of chemo brain after long days of chemotherapy. She had just laughed her typical hearty laugh, hugged me, and finished fixing supper for my family.

Today, someone hadn’t just brought a casserole.

Reverently I picked up a paper plate while I surveyed my kitchen counter. A complete meal, along with anything and everything needed to eat it marched down the counter. Drink, along with plastic cups, casserole, veggies, salad, rolls with bread and jam. I recognized some of the things from my refrigerator; others I had never seen before. But I didn’t have to make any decisions or fix a single item. I wouldn’t even have to wash dishes when dinner was over, as the spread included plastic ware, napkins—everything! My only decision was how much to put on my plate.

“Mommy, why are you standing there holding that plate like it’s gold?” asked Karina.

I laughed aloud, “Because it is!” I replied as I began to dish up platefuls of food for the family. “Because it is pure gold!”

Pure gold—that’s Grammy.

Grammy and Papa had been waiting for me on my front sidewalk on the day of Andrew’s diagnosis, along with a group of friends. Waiting so I wouldn’t be alone. Waiting to help in whatever capacity I needed. They had helped pack up the girls, and me, and held me while I cried.

Sometimes you just need to be held while you cry #caregiver #angelsindisguise #blessedbutstressed Click To Tweet

Grammy had already washed my laundry more than once, she’d done mending for us, she’d cleaned my bathroom, and she’d watched my girls when I couldn’t be there. She and Papa had shampooed our carpet when we’d had to sterilize everything in order to bring Andrew home. Every day, as I walked into work, I received Grammy’s huge bright and happy smile, and a hug. When I couldn’t be at work, she would call to see what had gone wrong, and to find out what she needed to do to help out our family. Grammy and Papa kept track of our chemo days, long after others had forgotten, and made sure to call with prayer support when they knew it was going to be a long one.

Grammy and Papa are just amazing people, their help incredible, and their support inexhaustible. These two extraordinary people started out with regular names like Darlene and John, but throughout Andrew’s illness they grew into “Grammy and Papa,” the names their ‘real’ grandchildren call them, and the role they play in our lives.

But secretly, I think, their real names are “angels.”

If you missed the first two stories in this series, you can find them here and here.

‘Except in rare circumstances, drowning people are physiologically unable to call out for help. The respiratory system was designed for breathing. Speech is the secondary or overlaid function. Breathing must be fulfilled before speech occurs.’ Characteristics of the Instinctive Drowning ResponseOn Scene, The Journal of U.S. Coast Guard Search and Rescue
Every #caregiver needs an angel, or a #lifeguard! #blessedbutstressed #childhoodcancer Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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You Might be Drowning in Plain Sight

Drowning and Caregiving

Sometimes caregivers are drowning in plain sight!

Drowning victims and caregivers share more than one might think. In this five-part series we explore the phenomena of “Drowning in Plain Sight.”

As you read, whether you’re a caregiver or someone who loves a caregiver, think about the people in your ‘pool’–is anyone drowning?

“Except in rare circumstances, drowning people are physiologically unable to call out for help. The respiratory system was designed for breathing. Speech is the secondary or overlaid function. Breathing must be fulfilled before speech occurs.” Characteristics of the Instinctive Drowning Response–On Scene, The Journal of U.S. Coast Guard Search and Rescue

The doctor adjusted his stethoscope on my back and told me to take a deep breath. I breathed in, and sat, not paying much attention to what was happening. The stethoscope didn’t move. “Again,” he ordered softly.

I let out the air I’d been holding and took another breath while my mind skipped to what I needed to grab from the store before I headed home from this appointment.
The stethoscope still had not journeyed to a new spot.

“Carol,” he reprimanded, “take a de-e-e-p breath!”

I reached deep and breathed properly. This I could do. My life might be falling apart and things running out of control, but I could breathe deep. I’m a flute player. My flute teacher used to make me practice breathing and taught me how to breathe deeply from the abdomen. I drew a deep breath and found that my air seemed to have nowhere to go.

I pretended to myself that all was normal and waited for the stethoscope to go to the next spot.

The stethoscope dropped while the doctor felt along my back.

What was the deal? He’d only listened to my breaths at the top of my back, that wasn’t normal, was it? Oh really. Who cares? I wonder if I mixed Andrew’s nasty medicine with chocolate pudding, would that help him get it down? Swallowing posed the problems…pudding is soft, maybe he could get it down that way. Oh, and besides the pudding, I should get some shaving cream. Karina needed to study her spelling words and writing in shaving cream is a fun way. Yeah, and my grades are due next week, so while she’s practicing spelling, I should get those tests graded. Man, I wish this headache would go away.

“Have you ever had asthma?” the question came out of nowhere.

“Asthma?” Was he kidding? “No, I’ve never had asthma. My breathing is fine—I’ve never had any problem.”

Silence.

“Why, is there a problem?” I finally thought to ask.

“Well, Carol. If you don’t have asthma…then…you’re not breathing.”

I laughed out loud. “I assure you I’m breathing. I’m alive.”

He smiled kindly and explained to me that the muscles in my back felt like the slightly atrophied muscles of an asthmatic patient; showing signs of not breathing deeply enough. I sighed and the very act of doing so proved to me that this doctor was way off.
Not breathing – who ever heard of that. Of COURSE I was breathing.

One has to breathe to live.

The beautiful water belies the silent drama…

He explained more fully that while he was listening, I took a decent breath, but then half the time forgot to let it back out. I needed to practice breathing by taking in big breaths, holding it to the count of three and blowing it – hard – all the way out. Then push even more out if I could. I was holding too much in.

Brother! I’m holding too much in, all right, but it’s not air. It’s panic, it’s fear, it’s responsibilities, it’s life.

But breaths? I was doing fine!

I left the doctor’s office slightly miffed that I hadn’t gone in for breathing issues at all, yet he’d spent valuable time obsessing about my breathing.  Frankly, the doctor had scared me a little bit with his pronouncement about my back. This was the same doctor who kept telling me I needed to get some help; to stop carrying things on my own and to allow people to give me some relief. The same doctor who had, just the week before, reminded me that in order to keep caring for my leukemic boy I would need to eat a little better, drink more water and maybe begin exercising.

Again I snorted with disgust. Like I have time to exercise and eat better…I’d like to see him get up at 3 to get to chemo and return home after dark and still get Larissa to her club meeting and read with Karina and get papers graded. Drink more water? That’d be great, but who has time to count drinks and really, I’d just have to use the bathroom more often. But yeah…we all know those health rules and just as soon as I could, I would follow them like I used to do.

All the way along the one-hour highway route my mind berated that silly doctor who could never just treat what I was asking for, but continually reminded me of taking care of not just my sick boy, but me. My thoughts bounced around wildly like they had come into the habit of doing, and I drove steadily onward. Suddenly breath gusted out of my mouth as dizziness hit.

Whoa. That was weird. I think maybe I was holding my breath while I was thinking!

No, one doesn’t just hold a breath – no one thinks about breathing, they just do it and it works! It’s natural! I continued homeward, thoughts flying in a different direction. Out of nowhere another breath blew out. Oh my goodness, my shoulders are up and I had been holding my breath!

Catching myself holding my breath three more times on the way home convinced me that, indeed, my life had become so crazy that I was now holding my breath, along with my shoulders and my fears, in an effort to accomplish more than I could handle.
I had quit reaching out to friends, feeling that I didn’t have time.
All the things I most enjoyed doing I had given up in an effort to help my kids be “normal”.
I had quit walking in the morning, using that time to get a head start to my day.
I was no longer doing all the things to take care of myself, in order to care for my family.

And I was no longer breathing. 

Have you ever found yourself ‘not breathing’ and unable to communicate with others about your inability to breathe?

The series continues with Breathing Lessons.

Have you ever found yourself not breathing? #blessedbutstressed #caregiver Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Hurricanes, Hospitals and Nurses

Children's Hospital Shout-out Time!

Hospitals and other heroes who go above and beyond…

Ever since spending an inordinate amount of time in three different children’s hospitals during my son’s fight with leukemia, I’ve had a soft-spot for nurses, social workers and other personnel who dedicate their lives to not only saving children, but improving their quality of life in the process.

They routinely go above-and-beyond, and you can read some of these stories here:

We’ve all been watching new of Hurricanes Harvey and Irma and their very unhappy trail across the ocean onto land.  I’ve seen posts and pictures and news of ugly havoc and beautiful brotherhood on the news.  This morning, I came across this news of Hurricane Irma and a tear-inducing story.

www.cnn.com has this wonderful picture of 3-year-old Willow in a Children’s Hospitals.

Irma threatens birthday for 3-year old with leukemia, until nurses step in

 

Go ahead, take the time to click on this story and share the tears and the joy produced by nurses who sheltered a family stuck from the hurricane, trying to celebrate a birthday all while reeling from a brand-new-and-therefore-terrifying diagnosis of Acute Lymphocytic Leukemia.

Willow turned three with only her mom present, because Hurricane Irma trapped the family elsewhere.  However, the staff at the hospital banded together to ensure a joyful birthday party that won’t soon be forgotten.  They made sure Willow and mom feel loved and valued and, for just a moment, “normal.”

Often, over the past couple of weeks, I’ve heard the media present stories expressing surprise at the beauty of people pulling together and the loveliness of strangers reaching out to care.  Truthfully, I’m sad that we, as a nation, are so shocked.

After battling Acute Lymphocytic Leukemia with my son, I’m not surprised.  We experienced love and care from strangers and family both and consider ourselves incredibly blessed by people from all three hospitals in which we found ourselves.

Mondays at Blessed But Stressed are for inspiration, and for me there is not much more inspiring than nurses working tirelessly to save lives or doctors who take the time to pin toys to their stethoscopes or social workers who bring in dolls to explain medical procedures.

It shouldn’t take a hurricane for us to recognize true bravery and heroism.

Hospitals should be on the news daily for their amazing work with children!

Here’s one mom who wants to just take a moment to say thanks!

Who would you like to thank, today?

It shouldn't take a hurricane to recognize true bravery and heroism #blessedbutstressed #ALL #leukemia #childhoodcancer Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Work: When Teaching is a Gift

An FMF Prompt

Work can be grueling and it can be a gift

Today’s prompt is: WORK

 

I received a gift at work today.

My award-winning day did not start when I forgot to grab my school keys off my dresser as I headed out on my 45 minute drive to teach 7th and 8th graders.

It wasn’t the  middle-schoolers’ insatiable desire to learn that was wrapped in a bow.

Nor was it the several visits from my principal to deal with…well…you know (did I mention I teach 7th and 8th grade?).

No surprising tray of culinary delights awaited my lunch-duty supervision while 7th grade boys waited impatiently for a turn at basketball.

The decision of some boys to bring two weeks of smoldering resentment to a full-roiling boil today was definitely no reward (yeah…that 7th and 8th grade thing again).

The gift did not involve the surprising and first-time-ever visit of the Educational Superintendent in the midst of a catch-up period (all those 7th and 8th graders behind on work take a few moments to try to catch up while others gleefully punch at the keyboard on websites that practice memorizing states or spelling words).

There was no present of free-time – instead my long day involved the extra bonus of sponsoring year-book after school for a couple of hours.

While commiserating with my co-workers was nice, it did not feel like enough of a bonus to offset the sweltering heat of the gym, nor the smoke-filled skies.

Some moments are painful and grueling, others are beautiful and wrapped with a bow!

My gift came as a complete surprise, wrapped up in the maturity of the high-school class I teach.

It came because I had to step out to deal with a…you know…7th and 8th grade issue…right then.

I stood outside the doorway,  just seconds after the bell rang, taking a few deep breaths, preparing to give these ancient and wise 9th and 10th graders a list of directions they could follow while the school secretary supervised them.

Hearing noises, I pasted on a smile and pulled open the door.  I stopped and beheld the best gift a middle/high school teacher can receive.  My whole class was gathered together – one student at the board taking lead, while others threw out ideas and brainstormed.  This is our fourth week of school and every Thursday we do the same thing.

My gift.

They not only knew what to do, but they DID it.  They not only were completing the task, they were smiling, and happy, and in control and focused.

I stood there watching for a moment, while tears gathered in my eyes.   See, this group, not so long ago, were middle-school kids – crazy and wild and out-of-control.  They were fun, noisy, creative and gossipy.  Childish and adultish by turns, along with kind and rude: singing songs and making farting noises (or the real thing) at will.

This class used to be that way.  But today, they knew what to do.  They took control.  Cooperatively they set out to do what they knew was expected – and what was expected is for them to plan and set up the chapel/assembly/worship  program for tomorrow.  Today, children became leaders.

This was my gift today – and THIS is why I teach.

When #teaching becomes a gift #fmfparty #five-minute-friday #education Click To Tweet

 

In the Midst of Catastrophe and Crisis

You do what you need to do

When catastrophe hits and crises arise, it’s perfectly okay to Just Do You!

When catastrophe strikes and crises arise, caregivers and survivors often struggle with guilt and surreal feelings of isolation and wonder that life moves on around us.

Sometimes we are caught so deeply in our own battle that we forget others face different fights. But even harder –  we’re bewildered that some people obliviously go on as if nothing is wrong. That one is hard to take!

Hurricane Harvey blew into the world’s riveted attention in a catastrophic way.

We all watch and wonder at the overwhelming flooding – both literally with water, and figuratively with loss.  Many people are praying and thousands of people are helping.  Meanwhile the people in south Texas  are doing what survivor’s do: working together in amazing ways to get through this.

Friday, Kirsten Oliphant, a fellow blogger and a hurricane Harvey survivor from Katy, TX, posted this:

“It’s not that I don’t care what’s going on in the world. It’s not that I’m not happy for other people or sad for other sad events. It’s not that I don’t hope for some version of “normal” in my life.

BUT. If there were a Hide Everything But Posts about Helping People Affected by Harvey option, I’d turn it on.

I’m just not ready for the outside world yet. Not that people shouldn’t be living it. They should! I just kinda can’t handle it right now.”

This hit me right between the eyes and sank deep into my soul!

I remember those days – facing the same four hospital walls day after day while my four-year-old lay fought Leukemia for his life. My mind jumps to a visit from family that meant the world to me.  They dropped everything and came to visit. Andrew had received blood the night before and so was happy and communicative as the family sat around discussing their plans.  They’d driven down from a small town to the big city where the Children’s Hospital housed us.  They were chatting and I zoned out, clicking back into the conversation to hear them mentioning hitting stores for back-to-school shopping.

It startled me – this mundane thing that people out in the real world were doing.  Shopping, especially Back-to-school shopping.  How could that be?  We had life and death stuff going on right here and frankly, I couldn’t think of anything else.  I nodded while the talk flowed around me.  It made sense.  Of course people needed to get their kids back into school.  Why not combine a a hospital visit for a nephew with a shopping spree in the city.  My mind came to grips with this shopping expedition and tuned back into the conversation.

“…and then we’re going to go to the river with Jim and Sarah and go jet-skiing this afternoon!  It should be fun!”

Wait.  What did they say?

They’re going JET-SKIING?  Is this even a thing?  Suddenly I couldn’t breathe.  While I could come to grips with necessary shopping,  or playing with friends, doing things that weren’t just fun, but extra fun was to bizarre for my mind to even process.  I nodded and smiled (I hope) while my mind struggled with alternate reality.

I wasn’t ready to let the outside world in because this world – this moment, this fight – were all I could handle.

That felt weird.  And selfish.  And uncaring.  I didn’t want to hear about fun my family was having.  When my mom told me about someone else fighting cancer, I sympathized, but cringed.  It was SO HARD to handle.

Awful.  I felt like an awful person that underwent an overnight transformation from someone who always cared about others to someone who just focused on this moment, this medical procedure and this fight.

Kiki said it so well, it’s “not that people shouldn’t be living it.  They should!  I just can’t handle it.”

Well, here’s what my three-and-a-half year leukemia battle for my son’s life taught me.  It’s all right everyone.  Handle what you can handle and just let the rest go until God tells you to take it up again.  Don’t feel guilty because if you try to take on more, you might just fall apart.

In catastrophe and crisis, it's ok to handle what you can deal with and shut the rest out! #hurricaneharvey #caregiving Click To Tweet

God made our amazing bodies and brains to shut down what’s not necessary in the fight-or-flight process and when we SHOULD handle more, we will.

Until that moment just relax and let God handle things for you.  No guilt – no shame – no apologies.

You just do you.

Just Do You #hurricaneharvey #caregiving Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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What If and If Only

Caregiver burdens we must stop carrying

what if

What if we let God handle our doubts and fears

As I stood under the spray of my shower yesterday morning, the what if moments of our cancer journey replayed through my mind.

The remonstrating hospital staff telling me that I shouldn’t do that repeated in my head as well.  But my son bleeding in his tears haunts me and I’ve always wondered how I let him get that sick.  The bruises spreading like wildfire as I drove the hour to the hospital have sent their own bruises into my mind, leaving black holes of self-doubt.  The wondering voices of nurses who came back to see us our third and fourth week in the hospital, speaking in awe that Andrew was “still with us” as they hadn’t “thought he would survive the first few days” have sounded like a gong of “bad mother” through my head.

No matter how many times the doctors said not to, I always wondered, “What if…”

Andrew on his way to chemo

What if I had brought Andrew into the doctor earlier.  If only I had known the bruises wouldn’t make doctors think of abuse, but of cancer.  If only we hadn’t all caught that flu bug.  What if I had taken Andrew to the doctor when he first began throwing up?

Gianmarco

This week is a sad, confusing and rejoicing week for our family.  It was thirteen years ago this week that my four-year-old Andrew was diagnosed with leukemia – a terrible day, an awful week, a horrible month and a terrifying time.  Also, a friend (found through this website) had her oldest son (Gianmarco) diagnosed with leukemia this week two years ago.  Sadly, he didn’t survive the fight.  Another little girl (Julianna)  I’ve been praying for many times a day (click here to read a post), passed away on Friday, the valiant victim of DIPG.

Julianna

The difference for this caregiving mom is that my son is a survivor.  He didn’t survive because of anything I did or didn’t do, nor did those others pass away because of anything done or not done.  It’s the ugliness of cancer. Our battle wasn’t easy, and at times it still isn’t – but we’re out the other side of that cancer fight.  For the two moms mentioned above?  My heart aches for theirs as they mourn the loss of their beautiful children.

I couldn’t help myself this weekend, I’ve been thinking about the what if and if only thoughts that have plagued me.

I wondered about Gianmarco’s mom and Julianna’s mom and I know that these thoughts hound them too and I prayed for peace.

After thirteen years of beating on myself (logic says not to, but emotion often doesn’t agree), I heard something different yesterday.

Several doctors told me (all through the three and a half years of treatment) that if I had brought Andrew in earlier, they would have said the same thing I did.  “Oh, your family has had the flu?  Get this boy some juice and let’s deal with the anemia brought on by all the throwing up.  He’s a healthy kid, he’ll be fine.”

Suddenly I actually HEARD that.  As that memory popped into my head, so did the distinct realization that had I taken Andrew into the doctor earlier, that doctor would have told me the above lines.  After which, I would have gone home and proceeded to treat my boy as I was: juice, water, rest, anti-nausea medication and lots of cuddles.  I would not have gone in again very soon – not wanting to over-react to throwing up, paleness, and listlessness.

What if I had gone in earlier to a doctor, like I’ve been kicking myself for not doing?

I would be, right now, so ANGRY at that doctor for not catching the leukemia.  They all assured me it was acute and extremely fast and hard to predict until it was almost too late.

Immediately my what if and if only mantra that I’ve clung to for years changed tune.  First, catching leukemia early doesn’t mean you don’t have leukemia.  Second, What if my waiting saved his life because he was diagnosed and received help just barely in time.  Literally one day later and he might not have made it.

Oh.my.word.

If I had gone in earlier, I might have gone in the second time too late.

The Bible tells us that to EVERYTHING there is a season.  Not my timetable – His.  God says that He’s got the whole world in His hands.  Not mine – His.  Jesus said that He holds the keys to the grave.  Not my keys – His.

I know that.  Logically.  But I too often forget and try to place things on my own shoulders that are designed for Jesus to carry for me.

Caregivers, moms and dads, loved ones – let go of those what if and if only moments.  We can’t go back and change them anyway, and maybe things worked the way they were supposed to in spite of our limited understanding.  Our lives don’t always feel good (please keep Gianmarco and Julianna’s families in your prayers) but God ALWAYS has our best interest in His plans.

What if we let Him keep control?

Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Take Care of Yourself: Six Ways to Avoid Caregiver Burnout

While still caring for your patient

In the middle of taking care of our loved one, we often don’t take care of ourselves.

Cancer Caregiving 101: Take Care of Yourself and Prevent Caregiver Burnout

When others offer to entertain your loved one, take time to go for a walk or relax by yourself–DON’T do housework!

“Now you must realize,” the doctor straightened the papers into the already thick folder as he finished summarizing the diagnosis, treatment protocol and prognosis, “with a best-case scenario, we’re in for a long haul. You two must take care of yourselves, too. This is not easy on parents, either, and you can’t let yourselves get run down.”

The nurse bustled into the room, loaded with scary looking objects which she unloaded in the room’s small bathroom. “So, you cannot touch this hat in the toilet, we can’t have his samples contaminated. Also, be sure you don’t let any urine touch you when you help your little guy go – because it will burn a hole in your skin.” There followed some more directions of what not to touch in the room and what not to do and what I needed to help Andrew with and what I needed to remember. As she breezed back out the door, having set these little traps all over the room, she paused in the doorway, “Mrs. Bovee, you need to remember to take care of yourself through this…this will be a long, tough road.”

After a two-week stint in the hospital with a feverish and neutropenic boy, I was home, frantically trying to

recuperate the family from separation, restore the house from chaos and prevent the laundry piles from taking over the world. As I sorted and started a load, a neighbor followed me from washing machine to dryer, not helping, but faithfully entreating me that I needed to “take care of yourself! Carol, you are just working too hard! You need to let go!”

I stumbled along beside the gurney as we returned from the spinal tap, wiping my tired eyes and unsuccessfully hiding a yawn behind my hand. The nurse, pushing a dopey Andrew, smiled sympathetically at me. “Carol, I hope you’re taking care of yourself. We see so many parents pushing so hard. You’ve got to take time out. Don’t forget you’ll need to recharge your batteries too.”

We received that advice throughout Andrew’s treatment. “You parents need to take care of yourselves too.” “Remember that you can help your boy best if you’re taking care of yourself too.” “Take some time for you!”

Great advice.
Perfect!
Ideal.
Laudable recommendations from caring souls.

“Don’t lift that boy – he’s too heavy for your back!” – OK, but he’s four, sick to his stomach, neutropenic, tired…I’m supposed to tell him he’s on his own?

“Don’t worry about the housework, take care of yourself.” – OK, but I cannot have a sick boy around dirt…is someone going to clean it for me?

“Make sure you eat regular and healthy meals!” – Ok. But the procedures are always during breakfast time, recuperation through lunch, driving through supper and falling into bed. When was I supposed to eat? And what in the world is a ‘regular time’?

The job needs to be kept, the house needs to be clean, the kids need to be loved, the meals need to be fixed, the sick one needs to be cared for – when, exactly, was I supposed to “take care of me”?

Truly, all I could concentrate on, throughout my son’s illness, was him! It wasn’t until it was too late, and I was in trouble, that I realized what I had done to myself. So the question I hear, from so many caregivers, is this:

HOW do I take care of myself, when my primary job is to take care of him/her? (tweet this)
I’m probably the last person to take advice from, as I did not necessarily do it right. On the other hand, maybe I’m a good person to listen to—I can honestly look back over my journey and say that there are things I would do no differently even if I could have known exactly what I know now. I would still give 150% to my child and my family.

However, there are some things that I wish I could go back and change, or do better:

1. Delegate the little things as much as you can: you cannot delegate the worry, no one else can carry your pain and your patient might not want you to delegate personal care. So delegate the windows being washed, the lawn getting mown, handing someone your money and your shopping list, etc. Delegate as much as you can. Sometimes that means swallowing your pride, but it might help you avoid swallowing medication later! ☺

2. Make lists. If someone offers to help – have a list ready of things they might be able to help with. If you have nothing you can think of right that moment (I remember someone offering to help while we were waiting for Andrew to come out of a procedure – nice, but not where my brain was right that moment), then write their offer down and get contact information and ask if you could call on them sometimes.

3. Ask. Don’t be afraid to call your pastor or a neighbor or a co-worker and let him/her know of a need. A lot of people think we caregivers have it all under control and don’t think to even ask if there’s a need. But many would help if they knew of a need. One person said to me, “It’s OK to allow someone else to have the blessing of helping you.” I had never thought about it that way before, and that was releasing to me.

4. Be willing to let go: sometimes, we caregivers think we need to be superman and wonder woman all rolled into one. We can’t. Or maybe, like in my case, I could for a while, but sustaining that after a while becomes impossible. Take the help that’s offered. And also let go of how that help is done. It might not measure up to your standards – but it will probably work!

5. Search out quiet moments. The days of caregiving are often busy and hectic, and when they are quiet, they can be scary. Grab moments of quiet to journal or to process some of what’s been going on. Take those moments to evaluate how you’re doing and how you’re feeling. Is it time to get some help? Do you need to find someone to talk to?

6. Expect less of yourself. This one has nothing to do with others’ helping, and everything to do with you deciding that it might be OK if you don’t get things done. Maybe you need to say no to some things you used to do. A caregiver has to re-examine priorities; and in that re-examination, one of those priorities has to be you. Your sanity, your health, your ability to keep on going.

It IS possible to take care of yourself, even while taking care of your loved one! #InspireMeMonday #caregiverburnout Click To Tweet

What ways have you found to take care of yourself?

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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