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.

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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… 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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Is Anyone in Your Pool Drowning in Plain Sight?

drowning

Is Anyone Drowning in YOUR Pool?

Drowning victims and caregivers have more in common than one might think. In this five-part series we explore the phenomena of “Drowning in Plain Sight.” As you read, think about the people in your ‘pool’—is anyone drowning?

‘Drowning people’s mouths alternately sink below and reappear above the surface of the water. The mouths of drowning people are not above the surface of the water long enough for them to exhale, inhale, and call out for help. When the drowning people’s mouths are above the surface, they exhale and inhale quickly as their mouths start to sink below the surface of the water.’ Characteristics of the Instinctive Drowning Response—’On Scene’, The Journal of U.S. Coast Guard Search and Rescue

Diagnosis and Deliverance

downingSomewhere, between diagnosis and deliverance, I forgot how to breathe. I find myself, at odd moments, holding my breath—not in anticipation or fright, but simply because I have forgotten the rhythm of breathing.
I didn’t know about my loss until I started experiencing horrible, unexplainable pain in the middle of my chest that felt like a heart problem.

“You’re as healthy as a person half your age,” the cardiologist told me.

Really? Than why does it hurt to breathe or have my heart beat strong and deep?  Why does my left side swell up?  When my malady strikes, it hurts to lie down or stand up.  Why does it happen over and over again?

“You have superior lung capacity with normal breathing function,” the internist told me.

Than why did it hurt to breathe?  Why couldn’t I take a deep breath without agony?  Walking up the stairs presented a cruel form of torture.

“Have you ever considered acupuncture?” my family practitioner asked me.

Really?  Alternative therapy?  I couldn’t believe a physician suggested alternative therapy.

“Well, I do go to a chiropractor and a massage therapist,” I admitted.

“Does it help?” she asked.

“I’m not sure.”  I shrugged. “Sometimes it helps the pain go away if I go in early, sometimes it doesn’t. My massage therapist claims that I have incredibly tight muscles on my left side. It takes her an hour to work through the knots.”

Have you forgotten how to breathe? It might be killing you. Click To Tweet

The Million Dollar Question

“Do you know how to breathe?” my neighbor and friend asked me. She’s a life coach, and helps people with chronic pain—she also suffers from chronic pain. “I can teach you how to breathe.”  I reluctantly agreed to go over to her house after work one evening.

“It’s called diaphragmatic breathing,” she told me. “Put your hand right below your rib cage and try to push your hand out when you breathe.”  I felt silly, but I tried it. “When you breathe shallowly, you decrease your body’s ability handle pain.”

“Really?”

“Yes.”  She launched into the technical reasons why shallow breathing keeps a person from processing pain and releasing endorphins that help the body take care of pain. I thanked her and wandered out of her house, hand on stomach, practicing my breathing while thinking of breathing in general.

Over the next few weeks, while I waited for my pain to go away, I caught myself not breathing. The computer didn’t load fast enough, family members failed to put their own dishes in the dishwasher, or I got cut off on the highway. Each time I found myself breathing shallowly through clenched teeth.

Somewhere, between diagnosis and deliverance, I had started holding my breath—in fright, in anticipation of the next piece of bad news, in mental pain and agony, in emotional stress. No one ever warned me that a side effect of all that stress would be a loss of breathing.

In fact, no one warned me about any of the side effects of a cancer diagnosis. Slowly, ever so slowly, I put a name on the side effects and started dealing with them. For now,

Many thanks to my incredible next-door-neighbor, Becky Curtis.  If you suffer from chronic pain, find hope on her website Take Courage Coaching.

Share Your Stories!

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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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!… 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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The Tricky Part of Psalm 91

How Caregivers Can Apply the Promises

trickyGetting to the Tricky Part of Psalm 91

In the final part of this series on Psalm 91 and the caregiver, we arrive at the tricky part of the psalm. Why do I call it tricky? Well, a simple perusal might cause someone to say, “Hey, I believe in God but bad stuff happens to me. How can I really believe in God?” It’s all about the context. The author of this psalm wrote it for a specific reason and to a specific audience (some scholars believe King David was the intended audience). Nevertheless, we can take the principles of the psalm and apply them to our own lives.

First, the Condition

Verse nine starts with a condition.

9 If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,

In other words, we have to do two things. We must claim God as our refuge and we must make the Most High our dwelling. But what exactly does that mean?

The first condition means that we have to acknowledge a higher power (and we won’t find it in ourselves or another person). We have to choose to let God do what he wants to provide refuge, or recourse for our difficulties, for us.
And once we make that choice, we have to continue to make the choice to let God handle things. If we don’t commit over and over again, then we fail to ‘make the Most High our dwelling.’

Next, the Promises

10 no harm will overtake you,
no disaster will come near your tent.

Verse ten sounds wonderful, doesn’t it? Harm will not overtake us—that’s another way of saying ‘overwhelm.’ So, harm might accost us, but when we take refuge in God and dwell in him, it won’t drown us.

I have a different take on disaster than some people might. The dictionary defines ‘disaster’ as “complete or terrible failure.” So even though bad things have happened to me and to the ones I love, I can say with assurance that God has kept disaster at bay.

11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.

I love this part of the promise—God will surround us with the kind of protection that he knows we need the most. Back in David’s day, he had to worry about things like lions, cobras, and stubbing his sandaled feet on sharp rocks. Or maybe those three things represent petty annoyances, powerful people, and the devil.

At different times in our lives, any one of the three could overwhelm us—and God has instructed his angels to protect us from whatever will weaken our faith.

God has instructed his angels to protect us from whatever will weaken our #faith. Click To Tweet

More Conditions and Promises

trickyThe psalm ends with two more conditions—we must love the Lord, and we must acknowledge his name. If we do that, God will answer us when we call on him, he will walk with us through trouble, and he’ll deliver us in an honorable way. In addition, he’ll satisfy us with a long life—because salvation means no matter how soon we leave our mortal bodies, we’ll still have heaven.

14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

I guess there’s nothing really tricky about the Bible. But we do need to study it, the context in which it was written, and ask the Holy Spirit to help us apply the principles to our lives today.

Takeaways for Caregivers:

1. We have to do four things: claim God as our refuge, dwell in him, love God, and acknowledge his name.
2. God desires for us to trust him and let him work out our problems (what a relief!).
3. Worry and stress can take years off your life. Let God handle the seemingly insurmountable problems.

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.

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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!… 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.

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Can Caregivers Find Comfort in Psalm 91?

comfortIt’s been a few weeks since I last wrote about Psalm 91 and the caregiver. In the intervening time, I’ve run a marathon, taken a marathon car trip (from Holbrook, to San Diego, to Holbrook, and then Tulsa, and finally to Palmer, Alaska). I have also taken on a different kind of caregiver role—this time as granny to my sweet grandson and helper to my daughter and son-in-law.

In the first two installments, I shared what I’ve learned about God’s protection from the evil one’s lies and attempts to draw us into the pit of despair. I’ve come to understand that Psalm 91 doesn’t promise to keep us from bad things—it promises to protect us from our human reaction to bad things.

Psalm 91 promises to protect us from our human, knee-jerk reaction to bad things. Click To Tweet

What About Those Thousands?

A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

You will only observe with your eyes
and see the punishment of the wicked.

The ‘it’ in the third line refers to the plague in verse 6. God has me covered in mind-protection—even if I get sick, or the ones I love go through disasters. All around me, those who reject God will stumble and fall (and I will join them if I keep my eyes focused on myself and not on God).

The world has plenty of examples of what happens when an individual rejects God’s sovereignty—people suffer from the consequences of their sinful actions all the time. But because I chose to accept God’s protection and right to rule my life, I’d like to think that I make better choices in the here and now and therefore don’t have to suffer so many consequences.

Don’t get me wrong. I don’t stand above anyone gloating and puffing myself up (God never asks us to do that). Practicing God’s sovereignty in my life takes a constant turning of my self over to God and a humble spirit (I tend to think I know it all).

But Do We Get to Skip the Bad Stuff?

God doesn't promise us a charmed life, he promises us comfort FOR life. http://wp.me/p2UZoK-1GdI have seen Christians go through difficult times and react one of two ways. They might believe that God wants to punish them for something that they did. When Pedro received his cancer diagnosis, a local pastor insinuated that if Pedro just confessed, the cancer would go away. God doesn’t work that way (and the pastor’s words brought no comfort).

The other reaction involves anger at God for not keeping his word because in Psalm 91 it appears that God promises a ‘Get out of Trials Free Card.’ I don’t think that God promises that we get to skip the trials of life.

After all, Jesus said in John 16:33

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”

I Still Get Comfort from Psalm 91

I believe that when we study the Bible, we should not just read the words, but that we should look for the context and the application as well. In the Amplified version, a footnote for Psalm 91 refers the reader to Exodus 15:26, and states that the “wonderful promises of this chapter are dependent upon one’s meeting the conditions stated in these first two verses.”

Exodus and Psalm 91, both written by Old Testament authors, were written for specific people during specific circumstances. The words of Exodus record God’s instructions for the Children of Israel (and it’s no coincidence that they are called ‘children’). The NIV translation implies in a footnote that the ‘he’ refers to the king. Therefore, we have some idea as to the specific audience.

The application comes when we realize two things as well. First, we need to dwell with God and give control to him. Second, we serve a powerful God who has proved faithful in the past and will continue to provide for us in the future. Once again, we don’t get to choose what that looks like.

I find comfort in the fact that my powerful and mighty God can prevent me from harm—if the situation calls for that. If harm befalls me, well, I know that God loves me and will help me through.

Applications for Caregivers

  1. Find comfort in reading about the power of God.
  2. Don’t blame God when disaster befalls you—we live in a sinful world.
  3. God doesn’t make people sick in order to punish them (punishment comes at the final judgment—things that happen now just happen because of sin).

Are there any promises in the Bible that make YOU mad?

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!

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Unconditional Love – Trisomy 13

A Mother's Letter of Love to her Unborn Child

When the joy of pregnancy becomes mixed with a Trisomy 13 diagnosis for your unborn child, a mother’s love doesn’t quit.  It grows stronger each day that little one grows inside, even when she knows that his birth might also mean his end.  I was blessed to teach Hannah, her senior year in high school, and we’ve kept in touch over the years.  When I saw this letter, I knew it needed to be shared on a site dedicated to caregiving of all kinds.  May you be blessed by this mom’s beautiful love for her baby:

One Mommy’s letter of love to her unborn baby with Trisomy 13

Dear Jedediah,

I love you. I am so thankful you are mine.

The doctors say you have a severe chromosome abnormality called Trisomy 13. They say you aren’t going to live.

But you are living now.

And every moment with you is precious.

So kick me, punch me, roll, and turn. Remind me that you are alive right now. Remind me how lucky I am to be your mommy.

You are so precious. You are so loved.

Your name, Jedediah, means “Beloved of the Lord.” Every time I hear your name I will be reminded that God loves you even more than I ever could. It is comforting to think of how much God loves you.

There are so many people who love you too, Jedediah. Daddy and I love you. Your family and friends love you. You have many friends who are praying for you and hope to meet you someday. I hope that somehow, in some way, you can know that we love you.

I can’t wait to hold you in my arms, yet at the same time I dread that day approaching because I know what it will likely mean.

So take your time dear one. If you are comfortable in mommy’s tummy, stay for a while. And kick me, punch me, roll, and turn.

And let me love 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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