Crutches for a Caregiver

Use those crutches - they help us keep moving!

Caregivers have to survive along with the patient.

Pudding.  Dora the Explorer.  Juice. Bambi.  Burritos.  Blankets.  Chemo backpacks. The Lion King. Ice Cream.

Crutches for a caregiver.

Crutches I thought I would never use!  But I used them for sure.  I used them often. Did that make me a bad mother?

I had always been a careful mother.  I oversaw every aspect of my children’s food, activities – everything.  As an educator I was careful with their screen-time, diet and bed-time.  I invited children to our yard to play, because I could keep my eye on my own kids better that way. I didn’t succumb to the temptation of using TV or screen-time as a baby-sitter.  Ice cream was rare.  Juice and pudding were treats.  Dora the Explorer?  I’d never seen it. We didn’t watch TV.

Having a four-year-old too weak to play, too lethargic to care, and too sick to eat spun my mothering ideals into a tail-spin.

Andrew’s medication tasted awful.  He was four so I ground it up and we got it down with pudding.  He was tired, but looked forward to Dora the Explorer during blood-draws.  Playing was out of the question, but a good dose of Bambi occupied him long enough for me to actually take a shower.

Burritos was the one food that trumped all other options and let’s be honest, I could hide one of his medications in that burrito.  I’d read that little ones drinking juice was a bad idea for their teeth, but water tasted pretty bad to my little guy and we worked to keep him hydrated.

Andrew had more blankets than anyone I’ve ever met in my life.  We used every single one.  He was extra cold, threw up often and we traveled to hospitals and clinics a lot – blankets made those trips bearable.  The chemo-backpack was started by my friend and added to often by other friends.  Toys abounded.  They had to be sanitized and switched out often in order to be of use.

Lion King was the funny movie Andrew wanted when he felt well.  And ice cream?  That was for those days when the medication was overwhelming and too much and the tears and the refusals had to be felt.  Ice cream was the reward for that nasty medicine going down all three times that day.  Ugh.

Where did my careful mothering go?  And did I do the right thing?

My mothering-style?  It went to survival mode.  Us mothers?  We have to survive.  Our most important job is to help our kids and our families survive.  Did I do the right thing to change the format of our lives?  Absolutely and I’d do it again in a second.

There is no “perfect” in caregiving.  There is no absolute “right” in mothering.  I hate all the stuff I see online – – the judgmental everyone-should-tolerate-each-other-as-long-as-they-do-it-my-way stuff that’s out there on social media.

Caregivers have to operate the best they can with what they are handed each day.  We have to use the tools at hand.  The patient needs to be comfortable, loved and taken care of the best way we know how.  But don’t forget this important part.

Caregivers have to survive this medical emergency too – it’s not just about the patient.

So do what you need to do to survive.  Use any and all crutches you can find,

And I’m just going to say this – my biggest, best and most stable crutch was not actually a crutch, but a foundation:

Jesus.  He’s the One that will get us through the difficulties.  I know I’m biased – but He is why I can sit here, on a Sunday, while my recovered Leukemia patient is outside shooting hoops!

Praise God for crutches.

A caregiver should use all the crutches available - and do NOT feel guilty! #caregiver #caregiving Click To Tweet

 


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Join the Club – Three Easy Tips for Caregivers

Carol

No matter how hard it feels to do – look for the perks of belonging to the caregiver club

It’s not an elite club.
It’s not a desirable club.
It comes with a very high membership fee.
No one ever requests to join.
But once you’ve been inducted into the club of Cancer Caregivers, you might as well participate fully. Even though it takes awhile for your head to stop spinning from the shock of the diagnosis, it’s important to jump into the caregiving role. No matter how busy you are at your full-time job of caregiving, plus your regular employment, plus your responsibilities as parent, spouse, outside of the caregiving role, our advice to you is Join the Club!

 

 

1. Make it a priority to participate.

Children’s hospital facilities often organize parent suppers or get-togethers to form a sort of parent-support group. Sometimes I felt that I did not have time to go, but when I went it was so nice to be with a group of people that were sharing my journey…who knew what questions NOT to ask, who knew what subjects were OK (it’s only in this group that it’s OK to talk about bodily fluids), and who might have more experience than you do at what you’re doing.

2. Take advantage of offers.

Sometimes, charitable groups offer benefits to cancer patients and their families. Candlelighters, a helper group for families of children with cancer, offered our family the chance to take a jet-boat river cruise for a day outing with other children-with-cancer families. They had offered other things over the years of fighting cancer, but often we could not participate because of travel distances or work commitments. This day on the river was a joy – and it was so touching to watch other cancer-kids in different phases of treatment, living their lives as “normal as possible” under the circumstances…choosing to live with joy for a day. It was good for my boy to recognize that other kids were in different stages, some bald, some healed, some still struggling—he felt like he was in a group where he belonged!

3. Be brave and share.

I remember standing outside the entryway to the children’s cancer ward, staring out the window, feeling very alone and overwhelmed. A lady stood down a ways and after awhile I noticed she had the same blank stare out at the beautiful scenery that I had. I felt a little shy, but she looked like she was hurting. I tried the line, “You come here often?” She smiled and told me of her son, back for his umpteenth hospital visit in a long fight with brain tumors. I told her of my son’s fourth hospital visit in a new fight against leukemia. We didn’t really offer any advice, we didn’t hug or make a lifetime friendship, but for just a moment, our burden was lightened because we were not walking alone.
What ‘club benefits’ have you found most helpful?


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It’s Not About the Wise Men – It’s Just a Simple Gift

- from shared wisdom gleaned from experience

It’s not about being wise – it’s just about sharing the journey

It’s not about the wise men, this Christmas.

Our gift to you comes from two ladies who consider ourselves anything but wise.  In fact, our story started with the words, “Don’t you wish you would have known…?” and continued with a resounding, “Oh, wow…yes!  I wish someone could have prepared me for…!”

Because there is no way to know what you’re going to need when a loved one’s life hangs in the balance.  There is no preparation you can do for administering dangerous chemicals to your child.  No studying prepares you to learn to let go of your loved one while at the same time fighting harder than your own life to help them with theirs (and that phrase makes sense if you’ve been there).  Nothing takes your breath away like hearing those diagnostic words declaring the battle plans you didn’t even know existed.

When your loved one is diagnosed, your life changes as much as theirs.

But the treatments are for them.  The medicine is for the patient.  The financial help is for the recipient.  Support staff, books, hospital rooms – everything is geared toward helping your loved one survive that catastrophic, life-changing illness.  Just like you want it to be!

Anita and I have said to each other, repeatedly, there isn’t much we’d change, looking back over the treatment for her husband and my boy.  We’d still fight the battles, maintain the home, fight for the rights of our patient.

There’s not much we’d change in the care we gave…

But boy could we have treated ourselves better in the process!

Maybe we could have understood, a little better, what the nurses said when they sympathetically clucked, “Now, you must take care of yourself too.”  What if we had accepted more offers of help?  Maybe we should not have buried our worries, fought the insurance companies all by ourselves or eaten whatever we could grab in between treatments?

What if we could have known?

Our gift, we pray, is that others can learn what our life-of-care-giving has taught us.  One step at a time.

Our gift, this Christmas, is a free book for you.  It’s not gold, frankincense or myrrh from the Wise Men – it’s just some stories and advice from two ladies who’ve been there.

Subcribe below or beside (depending upon your browser) and receive a free book pictured on this page!

Merry Christmas!

Our gift, this #Christmas, is a free book for you. It's not gold, frankincense or myrrh from the Wise Men - it's just some stories and advice from two #caregivers who've been there. Click To Tweet
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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
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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
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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.

 

 

 

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Submersion or Submission: Which would you choose?

How a caregiver can prevent "drowning" or going under, when struggling to keep afloat

We have a choice as caregivers: accept help or drown!

In the fifth part of our series on how caregivers seem to experience the same reactions to circumstances that a drowning person experiences, we explore the options a drowning person has–submersion or submission.

“From beginning to end of the Instinctive Drowning Response people’s bodies remain upright in the water, with no evidence of a supporting kick. Unless rescued by a trained lifeguard, these drowning people can only struggle on the surface of the water from 20 to 60 seconds before submersion occurs.” On Scene, The Journal of U.S. Coast Guard Search and Rescue

Drowning:

Overwhelmed. Depressed. Struggling. Devastated. Overpowered. Shocked. Overcome. Distressed. Swamped. Drained. Exhausted. Scared. Confused. Done in. At the end of the rope.

All caregivers know these words.

No matter how brave we want to be – no matter how brave we ARE, there comes a point in a caregiver’s journey where we just feel like we can’t go on. We KNOW we must be going under.

For some, that point might come out of the nowhere and smack us when we think we’re doing great. For others, that point might creep up on us; we know it’s coming, but we don’t know what to do about it—except just tread water for all we’re worth until we cannot struggle any longer. For some, “the point” might last for a few moments of desperation. For others, that point might become a new way of life that terrifies us with it’s ceaseless reality.

The point of submersion hits us all.

The waters will close over our heads: Unless a “trained lifeguard” comes to our rescue.
A caregiver’s network of ‘trained lifeguards’ includes caring people who know how to spot signs of distress. Many of us cling to a Higher Power. Most of us receive offers of help, but we feel unsure of how to balance things. Some of us feel that we wouldn’t be doing a great job as caregiver if we relinquished responsibilities.

I am a trained lifeguard. In our training and practice for water rescues (especially deep water or water with currents), the most important training involves knowing what to do with those drowning victims who resist rescue efforts—the people that fight (out of sheer panic) our efforts to help.

Lifeguards learn to approach with words, so that the drowning person knows we want to help. We practice gripping the victim firmly and continuing to talk, if we can, so that the victim understands what we are trying to do. But often people panic anyway, sure that both rescuer and victim will drown in the overwhelming waters.

Lifeguards learn that sometimes we will have to keep our distance and let the victim lose energy so that we can rescue them.

Carol dries out after rescuing a girl from drowning in Trujillo, Peru in 2010.

I rescued a child once, in a pool I was not familiar with and therefore did not know the water’s depth. At first, the frightened girl struggled in my arms and tried to “help” me kick, but her futile efforts took us both under water several times. I ordered her, in a rather stern manner, to lay back and let me carry her—to let me do the work—and I promised to get her over to the edge. For me, the edge was only about 10 feet away and I knew I could get her there with no difficulty. For her, the distance seemed insurmountable, and she had no idea of my swimming ability.

In the end, she clung to my arm, which I held firmly around her, and she relaxed, until I boosted her onto the edge of the pool. Her mother thanked me with tears while I sat in the sun, drying my clothing so I could continue my day.

I felt blessed; I had been able to use my training to help someone survive.

While I was a struggling caregiver, desperately trying to hold my head above water, but feeling that with each submersion it took me longer and longer to reach the surface, a friend told me that I was depriving others of the blessing of helping me, by trying to be so strong and to do everything myself. I was a good “swimmer”, but even the best can only swim for so long before they need a helping hand.

Don’t keep “struggling on the surface until submersion occurs”:

Let others around you gain a blessing by helping. #caregiver #caregiving #blessedbutstressed Click To TweetSubmit to the lifeguards that hover nearby. Don’t submit to submersion!

If you’re a caregiver, have you ever had to submit?  How did it make you feel?

If you’re someone who loves a caregiver, do you have any tips on helping out a frantic ‘drowning’ caregiver?

 

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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
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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
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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
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