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...… Click To Tweet

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

 

 

 

Inspire Me Monday Instructions

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

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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?

 

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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Angels and Lifeguards: What a Caregiver Needs

When You're Drowning, There Is Hope!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I had explained to her the phenomenon of chemo brain,

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

Today, someone hadn’t just brought a casserole.

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

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

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

Pure gold—that’s Grammy.

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

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

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

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

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

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

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

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

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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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A Different Kind of Caregiving

SchoolOutdoor School Present

I watch as the sky turns from city glow to deep blue. None of the students stir, and traffic flows by like a roaring river (even this early). Finally the clouds behind the campsite change from vague shadows to glorious pink.

In the quiet of the morning, the stress starts to wash away. For the past six weeks, the students and I have planned for this day, this week. They decided what time they would need to leave school in order to arrive in San Diego by 4 in the afternoon (4 a.m., they said). They decided what they would like to visit and learn about on this Urban Jungle Expedition.

Today we go on a whale watching tour, and visit the USS Midway. Tomorrow, we’ll take in the Living Coast educational center and a beach. Many of them have never seen the ocean before. Wednesday, they will venture out into the city on their “Choose Your Own Adventure Day.” Using public transportation, they will travel to points of interest that they didn’t want to miss. The only caveat? They have a $10.00 budget. (Don’t worry, a staff member will travel with each group). Thursday, they’ll hit the zoo. “I can’t wait to see a lion,” one young man told me yesterday.

Outdoor School Past

For the past two years, I’ve done the bulk of the planning for outdoor school. Sure, they kids had choices about which hike or which class they wanted to take. But I made most of the decisions. I figured they should enjoy whatever I planned and go with the program because I’d done stuff like this before.

The results? We had fun. The kids loved the hikes, activities, and programming. But the trips took forever and kids dawdled at rest stops.

This time, the bus arrived 20 minutes early and everyone hustled through the bathroom lines at the rest areas. Students have told other staff members how much they appreciate getting to make choices and plan things.

Caregiver Lessons

In teacher mode, I’ve forgotten a basic human need. People (even students), like to have input. They like to feel as if their thoughts and ideas matter. It makes them happier about the situation–even if camping isn’t their thing.

And that’s a good reminder for caregivers. How can we involve and engage the ones we care for in the decisions? How can we make it a journey together rather than a journey for? I’d love to hear your ideas in the comments section!

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?

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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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Autopilot – the mode of operation for long-term caregivers

And the God who gets us through

In times of trial, when it feels like we’re flying alone – God provides better than “autopilot” and becomes the pilot of our journey

Autopilot becomes the way we handle things flung at us as new caregivers.  Actually, who am I kidding?  It didn’t get easier just because it became longer – in fact, the longer I lived on emergency-ready, life-and-death mode, the grayer my world became.  My son was four-years-0ld when we started his cancer journey, and I was 39.  When we finished chemotherapy, he was 7 1/2  and I was 93.  My always-learning brain had turned to mush (Anita calls it chemo brain by proxy) and I literally saw through a gray haze. I functioned on autopilot – but it worked, because of Who my pilot is:  this is a poem I wrote shortly after finishing chemo and realizing I was in deep-struggle-mode.

I’m on autopilot

Feet float

From place to place

Unaware of where they’re going

Lost from where they’ve been

 

Eyes drift

Across words on a page

Reading and rereading a passage

Unable to soak it in

 

Ears buzz

Around conversations flying by

Desperately trying to pick out information

Confused by threads of thought

 

Mouth stumbles

Over pieces of a conversation

Tripping over thoughts refusing to be expressed

Incapable of coherence

 

Hands flutter

From task to task

Forgetting how to accomplish anything outside of an emergency

Helpless to proceed

 

I’m on autopilot again Lord,

Lost,

drifting,

buzzing,

stumbling,

fluttering

Autopilot

The only way I can do anything at all

Is to have You

Be my pilot

Caregiver coping - #autopilot. Let God be your pilot! #caregiving Click To Tweet

Put God in the pilot seat!

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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Expectations Can Make All the Difference

Choosing what we expect from life.

Father and son at the start of the cancer journey, on the way to chemo.

It was one of those mornings where expectations of an normal chemo treatment were obliterated – everything that could go wrong, was going from bad to worse!  We had arrived on time for four-year-old Andrew’s chemotherapy, but the nurse hadn’t.

When she finally arrived, the doctor wasn’t there yet, neither was the medicine.  When the medicine arrived, the doctor still hadn’t and the nurse couldn’t give the medication without written doctor orders, even though it was standard procedure.

Finally the doctor arrived and checked Andrew out.  Everything was fine.  Phew.  She suggested we start the Vincristine drip, which would take a little while, because, wonder of wonders; the Operating Room wasn’t ready for his Lumbar Puncture procedure yet.

The nurse hooked Andrew up for the treatment and was just ready to start when the OR called and, well, they were now ready.  The nurse unhooked Andrew and we wheeled him down to the OR holding area.

Can you believe it?  The anesthesiologist wasn’t ready.

Five year old Andrew didn’t care about any of this.  I mean, after all, he had the attention of mommy, the oncologist, the Peds nurse, the OR nurse and the OR assistant.  He chattered happily to any one who might be listening and followed his normal procedure of happily climbing onto the gurney and lying there while they readied the oxygen, the electric probes, the pulse/ox indicator, gloves, swabs and who knows what else.  He demanded a pillow (the OR nurse apologized, after all, it’s in his chart that he wants a pillow) and got it.  Still the anesthesiologist wasn’t ready.

Andrew chattered on about the need to go to Dairy Queen for breakfast (he did not get that idea from me) and declared it to be way better than Taco Bell and decided maybe we would have time for the library.  He proceeded to quickly announce anything else that popped into his little head – it was how he handled his nervousness.

Still we were waiting.

The nurse checked the flush syringe that was hooked up to the port in Andrew’s chest.  It was waiting for the anesthesiologist.  Suddenly Andrew noticed the syringe.  His eyes got big and he reached down and grabbed hold of the syringe.

            Let me pause for a moment

and explain to you the normal procedure that we’d gone through countless times in the last year and a half.  Usually, Andrew hops on the table, the oxygen mask is placed near, the anesthesiologist introduces himself, assures himself of who Andrew is, and injects the propothol (the anesthesia), into Andrew’s port.  Andrew has the same reaction every time the anesthesia hits.  He frowns, starts to tell me it smells funny (I know that because he used to get the sentence out, but now that they know his dosage, he never completes the thought).  Then his eyes get really big, he half yawns, half yells mommy, his eyes roll back in his head and in the middle of the yawn, he collapses onto the pillow and he’s out for the however long they keep him under!

On this day, suddenly Andrew determined in his little mind that the syringe on his chest must be the anesthesia and we just didn’t tell him.  His eyes got huge, he yelled, “Mommy!  Is this the sleepy medicine?”  Then, believe it or not, he half yawned and his eyes began to roll back into his head.

I quickly explained, “No Andrew, it’s not sleepy medicine, it’s just a flush.”

Instantly his eyes replaced themselves, he lifted his head off the pillow and finished the story he had been telling without hardly missing a beat.

            Expectations!  Who knew?  I have never before seen such a physical manifestation of a mental expectation.

I really wondered what Andrew would have done had I not assured him of it only being saline!  Would he have gone to sleep?  How funny.  Maybe after all this time, they don’t even need the anesthesia!

I have heard the phrase that if you expect people to treat you well, they will.  If you expect to succeed you will.  On the other hand if you expect to be carsick, you better take a container and if you expect to be treated as an outcast, you will most likely be very, very lonely.

Expectations.  Hmmm.

What do I expect for myself?

Do I expect to follow the Lord?  Can I expect to be happy?  Do I expect to live a full life of rewards and loving relationships?  Can I remember that a loving Father will be with me in everything that happens to me, even cancer?

Our expectations for ourselves and for our God can make a huge difference in how we approach life.

What are your expectations today?

What are my expectations of God? How about my #expectations for myself? #inspirememonday… 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 You Need to Do to Avoid Caregiver Burnout

A Good Night’s Rest Provides the Elixir for Caregiver Burnout

Pedro ‘circled the drain’—his life hung in the balance and no one knew for sure how to stop the infections that waged war on his chemo-weakened body. The doctors had started using drugs they thought might work. They also spent long minutes sitting on his bed, staring at him. It’s never a good sign when a doctor takes the time to sit on a patient’s bed.

caregiver burnout

I felt weary. For six months we had battled cancer, and now this. I numbed myself with food. Praying took too much effort. My friends did the heavy prayer lifting for me.  I had no energy to form words and thoughts and sentences.

My uncomfortable chair-posing-as-a-bed in Pedro’s hospital room kept me tossing and turning. Just when I would fall asleep, a nurse would come in to check Pedro’s vitals, or Pedro would start awake, needing something.

The night before, a family friend had arrived to visit. He posed an interesting question that I answered without thinking. “If you could do anyting you wanted to do right now, what would it be?”

I responded with the first thing that popped into my head, “Soak in a hot tub.”

“Why don’t you do it?” he asked. “I’ll stay here with Pedro and you find a hotel with a hot tub.”

I found a place to stay on a bus route, and safely made my way to a small hotel. For the first time in months I luxuriated in a decent night’s sleep. The impersonal hotel room and soothing soak in a bath had worked like balm to my broken thoughts and frantic worry. I had arrived back at the hospital feeling as if I could handle the next second, the next minute, the next hour, the next decision.

Five Minutes on the Phone Undoes A Night of Good

My cell phone buzzed, and I hurried from the room to take the call. I wish I hadn’t. Unkind words poured out of the phone and into my ear from someone I trusted. Someone I thought was safe and on my side berated me with bitter words for what they perceived to be my horrible actions of the night before. They scolded me for spending the night in a hotel. They railed that I would let a ‘stranger’ spend the night in Pedro’s room.

Each hurtful word pierced my heart. Mesmerized, all I could do was listen and pray for wisdom and the ability to not utter hateful words back. After what seemed like hours, I muttered an apology and promised that I would call my tormenter the next time I felt the need for a break or feared I suffered from caregiver burnout.

Broken and wilted once again, I entered Pedro’s room. Our family friend looked up and smiled. “I’m so glad I could come and that you got a good night’s sleep,” he said. “You need to take care of yourself so that you can take care of Pedro.”

I nodded numbly.

“May I pray with you before I leave?” he asked.

I nodded again and bowed my head. As our dear friend lifted Pedro and I up in prayer, I felt the presence of the Holy Spirit draw close and pick the broken shards from my wounded heart. 

How to Handle Caregiver Burnout (if You’re the Caregiver)

In retrospect, I know I should have done many things differently to avoid caregiver burnout.8 Tips for Handling #Caregiver #Burnout http://wp.me/p2UZoK-1Cb

  1. Take time each day to relax. This might look different for each of you. A brisk walk in nature, writing in a journal, praying, listening to uplifting music, or recording beauty with a cell phone camera might provide an oasis of relaxation.
  2. Make healthy food choices. Overeating will only make you feel more discouraged and burnt out. Eating well is a form of self-care.
  3. Learn to hang up politely. I should have interrupted the phone call with a polite, “May we talk about this later?” If the caller had answered no, I should have said, “I’m sorry you feel this way. I’d be happy to talk to you about this later.” and then just hang up.
  4. Remember it’s not about you. That other person was experiencing thier own form of trauma because of Pedro’s illness. Althought the catalog of woes focued on me and all I had supposedly done wrong, in retrospect, I think the caller was really pouring out their worries and grief.

How to Handle Caregiver Burnout (if You Know a Caregiver)

  1.  Watch for signs of burnout: memory loss, inability to make decisions, irritibility, changed behavior, depression, and withdrawal from normal activities.
  2. Remember your sphere of influence. Take action based on your relationship to the caregiver. Sometimes, it’s easier to hear the hard questions from a friend and not a family member. My family members thought I was fine (mostly because I kept assuring them that I was). It took a family friend to understand the depth of my caregiver burnout.
  3. Ask. What can you do to ease the burden. Ask the caregiver what one thing they would really like to do and then help them make it so. When others ask, it relieves the fear that caregivers have that they exist in isolation.
  4. Remember it’s not about you. Don’t feel rejected if the caregiver doesn’t accept your offer of help. You might not be the person God has in mind to serve. Don’t burden caregivers with your opinions on the job they are doing. Think twice (or three or four times) before speaking critically.

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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Safe in the Tub – the love in the midst of the impossible

Five-Minute-Friday: Safe

This post is written with the gang over at Five-Minute-Friday where we write on a prompt, for five minutes, and then post.  Don’t think, just do it!  This week’s prompt:  SAFE

It’s been sitting for nine years, safe in the bin I threw it in when I tried to return to “normal” after Andrew’s last chemotherapy appointment in December of 2007.  I cherished each card, letter, poster, and note people sent to us. But suddenly, that year, I needed to hide them.  We had more than enough reminders of Andrew’s travel through three and a half years of leukemia treatment.

I felt desperate to return to life.

Safe in the bin where I placed them. Reminders of support and love.

This week my school is kicking off the Pennies for Patients campaign for the Leukemia/Lymphona Society. On a search for the Pennies for Patients poster that featured Andrew, I rifled through that plastic tub that I have kept safe, but untouched for years. Just opening the lid provided a lightning flashback because of the innocuous heplock flush valve lying on top of the last MRI results.  I could not read more than 6 or 7 cards, as the tears blurred my vision. The valves, flush syringes and deadening cream in the bottom of tub ensured the return of the cover.

But not before a huge rush of appreciation and love flooded me.  I saw some imaginative and slightly odd cards decorated with love by children none of our family have ever met – those children who prayed for my boy.  There were recognizable post-it-notes that I would find on my desk after returning to work after a nine-hour-day at chemo.  I read hand-written poems and prayer placed in my mailbox by my high-school students and a note left on my clean pile of laundry by a friend.  A couple of empty envelopes baffled me, but just until I remembered the lady who sent us half of her over-time check for 6 months straight to help us out.  I hadn’t met her then, but she chose to bless us anyway.

There are more.  So many more.

A tub full of blessings and love waiting for when I need it, or when I can handle it.

A safe place full of reminders that our world holds beauty in the midst of ugly, and safety in the middle of a storm.

There is still beauty in our world that keeps us safe and grounded through hard times #fmfparty… Click To Tweet

Confessions my FMF friends:  I honestly have no idea how long this took me to write.  I got hung up on the tub full of blessings tonight, which forced me to write when I thought I had nothing on the prompt!