A Neutropenic Christmas

God's Love in the Small Things

We can make the difference - even during a a neutropenic Christmas!

We can make the difference – even during a a neutropenic Christmas!

“All I want for Christmas is…” the song echoed down the hospital corridor as I made my way back to my neutropenic boy’s room.  My mind finished automatically, “…to be home.”   I wanted to be home, I wanted to be with my whole family, I wanted to not be watching temperatures and blood counts.

Truthfully, this was the day after Christmas.  We had been home for Christmas, and the blessings we felt as we gathered around our tree had me fighting back tears most of the day.  December 26, however, brought with it a fever with an unknown source and we were back in the children’s ward, listening to Christmas carols and still smelling the turkey.

I walked into Andrew’s room and saw his brightly flushed cheeks and over-bright eyes and I knew the fever hadn’t abated.  “Are the girls coming?” he asked.

“No.  It’s snowing, Andrew.  They can’t get over the pass very safely.  Daddy says they’ll try tomorrow.”

“Ok”  His eyes closed but his hands still twitched restlessly.  I settled onto my cot.  “Mommy,”  his eyes were on me,  “I loved Christmas!”

“Me too, buddy.”

Andrew during his surprise Santa visit.

Andrew during his surprise Santa visit.

As my four-year-old drifted off to the sleep he needed so badly I remembered the visit from a local Santa, who’d known Andrew couldn’t go out.  I thought about my friends who were all happy to remove shoes, to use Germ-X, to wear a face-mask while they visited.  I pictured the video made by my friend so my boy wouldn’t miss his Bible class.  I recalled the gas gift cards, the books and the music CDs we’d received.  I smiled as I heard again the students who’d come caroling at our door, knowing Andrew was missing the annual Christmas party at the school.

I had been scared, when approaching the Christmas season with a neutropenic boy.  I wondered how we’d make it special and keep our traditions with him being so sick.  I prayed daily we could actually celebrate Christmas at home, together.

I’d forgotten that God is found in the small things.

He’s found in the gifts and thoughtfulness of friends and family.  God gave us presents we’d never thought of, allowing us to see the caring of the world around us in ways we never would have otherwise.  God opened our eyes to the beauty of time together over anything and everything else.

Not every caregiving story provides that kind of Christmas.  As I write I think of the many caregivers I know and love who no longer have a person to take care of: they would give anything to be called a caregiver again.  They are facing a Christmas that feels empty.

My prayer, this Christmas season, is that we remember that God is in the small things… Click To Tweet

My prayer, this Christmas season, is that we remember that God is in the small things:  the things that you and I do to remind caregivers they are not alone.  Those moments we spend sending an encouraging note.  That extra copy of a picture we share with a caregiver to show them we remember, we care and we love.

Maybe sometimes God’s love comes through visits from Santa or maybe it’s in that bottle of Germ-X that caregivers know too much about – whatever form God’s love takes, let’s you and I be the ones to share it!

Whatever form God’s love takes, let’s you and I be the ones to share it! #neutropenicchristmas… 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 most inspirational post from the previous week.

2. Vist 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!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).


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What DO Caregivers Crave?

The Answer Might Surprise You!

caregiver-craveWhat DO Caregivers Crave?

I locked the bathroom door behind me and hurried through my morning routine, keeping a wary eye on my watch. I had just five minutes until the room outside would fill with doctors and interns on their morning ‘rounds’ of the cancer ward. They didn’t actually go anywhere—they met in the repurposed patient room that doubled as a family hangout and place to grab a quick shower.

With three minutes left, I gazed longingly at the bathtub and the clean towel I had grabbed from the laundry cart. Not enough time. Pedro had had a rough night and I had cat napped much later than usual. A fresh layer of deodorant would have to do.

I grabbed my toiletries bag and swung the door open…20 pairs of dignified eyes swiveled in my direction. Mumbling mortified apologies, I scurried through the door into the hallway.

More than anything else, I craved a long soak in a hot bath without the guilt of knowing some other patient’s family member might need the bathroom, too. I craved a night of sleep without the beeps and blips, alarms and nurses checking on Pedro.

Of course, I wanted Pedro healthy and whole again. But nothing in my life up to that point had prepared me for the life of a caregiver. If you know a family caregiver, this list might help you understand what they may crave the most.

Five Things Caregivers Crave

1. Affirmation. Take time to speak words of appreciation for the job that they do—even if they don’t take care of YOUR family member. A simple, “Caregiving is difficult. Your ________ (fill in the blank) is so lucky to have you on their side during this difficult time.”

2. Acts of kindness. Caregivers may not have time in the moment to properly thank you for your deed, but believe me, each act of kindness helps fill the hole of loneliness and isolation. Buy a gift card. Send a note. Reach out on social media. Let the caregiver know that you care.

caregiver-crave3. An hour of worry-free time. At one point in Pedro’s illness, a family friend flew from Montana to California just to spend 18 hours with Pedro. He encouraged me to find a hotel room and to relax. It wasn’t easy for me to step away, but after a long soak in a hot tub and an uninterrupted night’s sleep, I felt ready to take on caregiving again.

4. Activity. The mind-numbing boredom and fear of sitting in a hospital room with a critically ill person can threaten to drown out reason. I entertained myself by bidding for things on eBay with money I didn’t have. Anything to stimulate the mind or the body. Gift a membership to Audible (the patient and caregiver could even listen to books together). Offer to go for a walk with the caregiver.

5. A hug. A virtual hug works, too, if the caregiver lives a long ways away. I went for weeks at a time without receiving a hug from anyone. Pedro’s life hung in the balance and we were a thousand miles from friends and family.

Other Ideas?

Q4U: What can you add to the list if you are or have been a caregiver? Do you know a caregiver that you can reach out to?

Five Tips for Using Social Media for Support in a Crisis

Beware Oversharing and Sharing What You Shouldn't!

How to use social media to raise support for a sick person

To Share, or Not to Share

In the last few years, we’ve seen millions of people, from celebrities to classmates, live their lives out loud on Facebook, Twitter and other social media sites. But when disaster strikes, how does a person decide what to share and with whom to share the information?

Ultimately, the decision should rest squarely in the hands of the person who is sick. In the case of an ill minor, the decisions rests in the hands of the parents. While our first impulse might be to log on to to Facebook and announce “#Cancer sucks, and Bobby has it”, it’s probably not a good idea. Especially if ‘Bobby’ is your husband and you haven’t discussed it with him yet. Or even worse, if ‘Bobby’ is your cousin’s child and your cousin has no idea that you’ve announced his child’s medical condition to the entire world.

When my husband, Pedro, received a diagnosis of non-Hodgkin’s Lymphoma almost 14 years ago, Mark Zuckerberg hadn’t even finished high school and Jack Dorsey had yet to create Twitter or tweet about anything. Social media consisted of emails and local gossip.

When we broke the bad news to family and close friends, we either did it in person or called them. We emailed others who we thought would like to know about the diagnosis.

At first, it was easy to keep people informed about Pedro’s fight. Gossip and the occasional phone call did the trick. Unfortunately, when his condition worsened and we had to travel over a thousand miles away from our local support network, information sharing got complicated.

From Mild to Wild

Phone calls to our local pastor and my parents (who had moved in with us to take care of our young children) kept people informed of our prayer needs and Pedro’s ongoing condition. Unfortunately, this word-of-mouth method of passing on information resulted in rumors of Pedro’s eminent demise (though no fault of either our pastor or my parents)—prompting one of my daughter’s classmates to say to my daughter, “Hey, when your dad dies your mom can marry my dad then we’ll each have two parents.”

About this time, I purchased a laptop computer that I carried with me and kept hooked up to the phone line in Pedro’s hospital room (wireless was relatively new). In this way, I could send out emails with up-to-date alerts as to how Pedro fared. Unbeknownst to me, many people forwarded my emails to their friends, and before I knew it I got emails from strangers in other states and even countries asking to be added to the email list or just dropping me a note to let me know they were praying for Pedro.

Also unbeknownst to me, someone back home started a fund to help our family out. The fund allowed our girls to visit two times during Pedro’s illness—once at very short notice when the doctors advised that the family gather to say their goodbyes.

Social media has undeniable power and clout and it can play an important part in helping you, the caregiver, maintain your sanity (it’s much easier to write an update than it is to answer numerous phone calls) and build a community of boosters who will support you during your season of caregiving.

Five Tips for Using Social Media in a Crisis

1. Decide who will keep people informed.

Have a discussion with the person who has cancer and ask them what they want. A close friend who had helped us during Pedro’s illness received a cancer diagnosis several years ago, and she chose to act as gatekeeper to information (her husband had no interest in social media, while she already had a presence online).

2. Choose a social media source for sharing information.

One of my former students enlisted her entire Facebook network to cheer her on in her fight against breast cancer. Other friends from a different generation have chosen to form private, invitation-only groups. The following resources should prove useful:social media

  • Caringbridge.org offers free, personal and protected sites where family members can visit and leave messages of support. The personal site creator can share blog posts and approve those who want to join the site. Caring Bridge also offers a support planner that caregivers can use to organize family and friends who want to volunteer.
  • Facebook.com offers a free social media account. Be judicious with this powerful tool, and pay close attention to privacy settings unless your loved one wants the entire world to know about his/her latest bout with vomiting. You can also use this tool to start a private group.
  • Lotsahelpinghands.com is another free service offered to caregivers. Its primary purpose is to match volunteers with those in need and to help caregivers build a community to help them in their season of caregiving.
  • The phone tree, an old-fashioned but effective method of communicating whereby you enlist the help of several key people who commit to calling people on a list when there is a need to ask for help, prayer or give information. Many faith communities have a phone tree system in place—if you are part of a faith community, check with the leaders to see how the phone tree works.
  •  Email updates still serve as an effective way to keep key people informed.
3. Set boundaries and guidelines.

In retrospect, I don’t think I would have done anything differently. Neither Pedro nor I minded that people from around the world knew about his condition. Whether they were Christian, Jewish, Buddhist or atheist—it felt wonderful to know that people cared. Depending on the wishes of the person you are caring for (or, in the case of a minor, the wishes of both parents), you can limit access to the information you share. Do this by controlling who sees your posts or by including a note at the beginning of each email asking that those who are privy to the information not pass specific information on to others.

4. Get the word out.

Bad news travels fast, so this should pose no problems. Set up an automatic response to all emails informing people that you will be unavailable for a time. Direct them to your caringbridge site for further informaiton (remember, YOU can control who joins sites or groups). You can also prepare a statement and link to text back to those who text you for updates. The same goes for voicemail greetings. I hate talking on the phone, so I’d much rather leave a voicemail message asking people to check out the Internet site.  This frees me up to focus my attention on my loved one.

5. Don’t be afraid to ask for specific things.

The power of social media in creating a support system lies in your ability to ask. Generous people will respond.  Ask for specific things. At one point, Pedro’s white blood cell counts weren’t going up at the same time he had a blood yeast infection. I shot off an email asking people to pray that his white blood cell count would go up. Ask for volunteers. If you need someone to take you to the airport or a doctor’s appointment, or babysit your children, don’t be afraid to ask.

Don’t let fear keep you from reaching out to others. If you have other ideas about creating a community of support, please share them with us by commenting below.

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 most inspirational post from the previous 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!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

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Dreading a Colonoscopy? Ten Tips to Help You

Hint: A Colonoscopy is a Piece of Cake

colonoscopy

The Dread ‘C’ Word

If you have already turned 50, and you visit your primary care physician on a regular basis, you’ve probably heard the dread ‘C’ word. No, not cancer—colonoscopy.

Having a colonoscopy didn’t make it on my fifty fun firsts lists—mainly because ‘fun’ and ‘colonoscopy’ don’t belong in the same sentence, much less the same room. Who do I kid? A colonoscopy is painless and you won’t remember a thing—piece of cake, right?

The forty-eight hours leading up to the colonoscopy might kill you, though. I have no star power (I head about some morning show host that televised his or her colonoscopy in order to promote the importance of having one done), but I have survived two of them so far.

I offer advice from the wealth of my experience. Your doctor won’t tell you everything—he or she will simply hand you a prescription and a set of instructions longer than a new car contract and send you on your way.

Doctors don't tell you everything about how to prepare for a #colonoscopy. 10 tips to help you. Click To Tweet

Buyer Beware

1. Plan your colonoscopy for a Monday. Take my word for it. You don’t want to experience the privation and misery of preparation during work hours.
2. Ask for the first appointment of the day—even if you have to awake at 4 am and drive 90 miles. You want to be out of your misery as soon as possible.
3. Phone a friend…a very close friend. Pedro has managed to absent himself (not on purpose) during both of my colonoscopies. You’ll need a responsible person to drive you to and from the procedure. Your friend shouldn’t be grossed out by talk about diarrhea and farting.
4. Plan on grocery shopping at least four days before the event. For my second colonoscopy, I had to very bland foods with no fiber for two days, starting on the Friday before my Monday procedure (refer to #1). Buy lots of Gatorade (just make sure it has no color).
5. Warn your family and friends. The diet did strange things to my blood-sugar levels and I got cranky. Don’t make any important decisions during this time period (or try towing a trailer behind your truck).

colonoscopyThe Night Before C (no, NOT Christmas)

6. Movi-prep has nothing to do with the theatre or entertainment. It’s an evil substance that turns your colon so clean the doctor could eat his breakfast off of it. Ick—that’s a horrible visual, but I feel doctors deserve this dig because they don’t warn you as to the awfulness of Movi-prep.
7. You’ll need a garbage bag and an old towel (or two). Spread the garbage bag on your bed and lay an old towel on top. By your sixth dose of Movi-prep, simply relaxing in sleep will cause diarrhea. Trust me.
8. Don’t try to drive yourself to your appointment. Let your friend or spouse drive you. You will have just spent a night trotting back and forth between your bed and your bathroom. Exhaustion and driving don’t pair well.
9. Keep your sense of humor. Crack jokes to relax your medical team (or creep them out). When the doctor told me to lie on my side, cross my arms and pull my legs up a little, I quipped, “I feel like an Egyptian preparing for mummification.” I think everyone laughed…
10. You will remember NOTHING of the procedure. This is a good thing.

There’s No Pain Involved in a Colonoscopy

See? A colonoscopy shouldn’t scare you. You won’t remember the actual event. I hope you feel inspired to go ahead and make that appointment if your primary care physician has recommended that you get on. If you’re still a young’un, file this away for the future.

Taking care of your health (especially if you act as a caregiver to someone else) makes good sense—even if it feels uncomfortable to let someone else take care of you for a few days.

You can do this!

I'm sick of politics and all the vitriol. Let's talk about how to prepare for a #colonoscopy… Click To Tweet

Do you tend to avoid medical tests and procedures?

What’s your inspirational story?

Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your most inspirational post from the previous week.

2. Vist 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!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

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Caregivers for Life

When the beauty never fades and the loves never gives up hope

Loving hands are caregivers for life

Loving hands are caregivers for life

Although the house smelled of medication, rancid dishrags, baby powder and urine, the remnants of a life well-lived were evident all around. Knick-knacks reflecting good taste and money waited for my dust-cloth. A black grand piano sat in ancient splendor in a darkened and neglected corner of the living room.  A pile of dishes and a dirty stovetop didn’t quite hide the name brands that spoke of good breeding.  The luxurious carpet hid my footsteps from the reason I entered the house.

My reason certainly wasn’t to get rid of the horrible smells, although that was the source of my income.  My reason was not to cut the dust and allow the lights to sparkle off the ornamental decorations in the living room although that was on my to-do list.  My reason was not to change the dirty sheets, nor to spray air-freshener, nor to wipe the mirrors, all of which needed it in the worst way.

My first reason sat at the table, silver blue hair matted in the back and smoothed in the front, rocking back and forth, murmuring “No, no, no, no, no, no…no.”

My second reason stood beside her, his own gray hair flopped to the side, nervous but conscientious hands fluttering to help out his adored wife of 60 years.  He held out a spoon filled with mush and coaxed her mouth open, “Just one more bite, darlin’….you have to eat.”

“No, no, no, no, no.”

“Come on now, darlin’.  Just one more bite and then we’ll go get your hair done.  You’ll like that won’t you?  You’ve always liked getting your hair done.  Come on.  One bite, darlin’.  You need to eat.”

Moving in a burst of speed, he stuffed the bite in between another set of “no’s.”

Some dribbled down her chin and the discolored dishrag was put into use again, wiping the goo.

The rocking continued, echoing the defiant, “No, no, no, no…No!”

With a series of practiced moves, he finished up the feeding session and turned her wheelchair to the door, which I held open.  As he eased his wife into the front seat of their car, he patted her hair as smooth as he could and then loaded the wheelchair into the back.  He rounded the car and made to enter.  I interrupted as gently as I could, respect in my every thought, “Elder Stevens?”

He looked up from sorting his keys.

“Your hair….”  I paused, awkward about how to address an esteemed man such as he, relegated from Professor, Pastor and author to that of caregiver. He just stared at me, not helping me out.  “…you might…want to…uh… smooth your hair a bit.”

He reached up with a self-conscious giggle and smoothed his hair.  He motioned to his wife, “She would hate that!”  He plunked himself into the car with a laugh and sped away at a speed strangely at odds with the slow pace of his household.

I took a deep breath and turned back to the house again.  I held that breath as I raced through the house, throwing curtains wide and slamming every window open.  As I drew back the patio door,  the fresh breeze swept through the house and I let out my breath in relief.  I turned to the living room to start dusting.  That job was the most pleasant and it gave the worst parts of the house time to air out.

As I dusted the lovely furniture and ran my cloth over that beautiful grand piano, I pictured Mrs. Stevens the way I’d grown up seeing her; elegantly stepping from their nice car and walking up the front sidewalk with a grace that made her medium form seem tall, her mink stole wrapped around her neck under perfectly styled and blue-tinted hair.  Her husband would walk beside her, a gentleman as always, escorting her to their house with a hand at her back and another ready to open her doors.  She would sweep inside and soon I would hear the smooth sounds of Mozart drift from their house.  Sometimes I would pause while riding my bike and just listen to the flow of lovely notes coming from within my neighbor’s house.  .

A stroke had zapped her in the middle of the night about a year and a half ago.  My parents had gone over to help, before the ambulance could get there.  They told me that it was bad, that Mrs. Stevens might not live.  Our family prayed for her regularly over the next few weeks and were delighted when Elder Stevens had informed us of the joyful return of his wife.

I watched as their car pulled up the driveway and he came around to escort his wife to the door.  I waited for her stylish appearance.  Instead, he pulled out a wheelchair and a small, stooped and misshapen form was lifted out and into the chair.  He wheeled her up the sidewalk while she said, “No, no, no, no, no.”

“See?”  He beamed, “she’s getting her speech back!”

I was stunned and heartbroken for the loss of such a beautiful lady.

I finished in the living room and moved to their bathroom.  That was the worst and I detested cleaning it.  I had described it to my teenaged friends and they asked why I worked there and why I didn’t find a better job.  I glared at the bathroom and donned my big rubber gloves.  Here goes.  Ugh.

Why do I do this?  I thought to myself.

But as I scrubbed I thought of another moment I had stood, extremely reluctantly, in that same bathroom.

Elder Stevens had called me, “Carol, can you please come over, we’re having some difficulty.”  Upon arrival I discovered she was stuck where she had fallen in the bathroom and he couldn’t lift her.  It was truly the most uncomfortable moment of my life and I wanted to crawl away in shame.  Mrs. Steven’s head shook and she cried, “No, no, no, no, no.”  I wanted to cry with her but instead reached out a helping hand.  Together we lifted her, as he crooned, “I know Darlin’.  I know.”  Together we carried her into the bedroom and laid her gently on the bed, where he smoothed her hair and spoke softly to her.  “I know, Darlin’.  I’m sorry.  It’s just Carol.  You remember our little neighbor girl, Carol.  She just wants to help.  It’s OK.”

He still was soothing her with gentle encouraging words as I slipped out the door to take a deep, fresh breath and collapse in my own backyard with tears running down my cheeks.

What kind of life was that?  The elegant mink was in the closet, the hair was rarely beautiful and the only thing she could say, after a year and a half of therapy continued to be, “No, no, no, no, no.”

I moved to the kitchen.  Yuck.  It always smelled because the only time it got thoroughly clean was Thursday, the day I came to clean.  Elder Stevens tried his best, but it was all becoming too much for him.  He just couldn’t keep up and Thursday was his day to start again.  Each week I noticed things were a little worse than the week before and each week I tried to take on more duties.  He was tired, careworn, and I assumed he was heartbroken.

I checked the clock and realized I only had about 20 minutes until they would be back from the hairdresser.  I liked to be done before they got back because that way they came back to a sparkling fresh house, and, that way I didn’t have to face her helplessness and his concern.

I vacuumed my way down their hall and as always, my eyes were drawn to the pictures on the wall:  Elder and Mrs at their wedding, faces filled with hope and joy.  The two in the mission field with their son.  Mrs. Stevens  with her sisters, and Elder Stevens with his parents.  Her playing the piano in a glorious concert hall. Their 25th wedding anniversary and a picture of their 50th.  Everyone smiling, happy and looking like they belonged together.

Wrapping the cord around the vacuum cleaner I spotted movement out the sliding glass door.  It was their car racing back to the house.  I zoomed the vacuum into the closet and sprinted through the house slamming windows closed and turning off extra lights.  The garage door slid closed as I slipped out the front door.  Through the breezeway between house and garage and over the sounds of repeated “no’s” I could hear his gentle voice, “I know Darlin’.  You’re tired.  It’ll be okay honey.  We’ll just get you in the house and you can rest.  You look so beautiful with your hair all fixed like you’ve always liked it.  But then, you’ve always been beautiful.”

“No, no, no, no, no.”

“Well honey, you say that, but I love you.  I’ve always loved you.  We’ll get through this, just like we’ve gotten through everything.  You’ll feel better as soon as you rest.”

I clicked the gate shut behind me as they came around the corner.  Tears filled my eyes.  This is why I keep cleaning their house.  He doesn’t want a stranger for his Darlin’, and I cannot imagine a more beautiful picture of love.  Every time I heard those sweet gentle words I knew I would clean any mess, for however long it was needed, for a couple so in love that the beauty never faded and the love never gave up hope.

Family caregiving: when the beauty never fades and love never gives up… Click To Tweet

 

Do you have a caregiving story for National Family Caregiver Month?  Click here!

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 most inspirational post from the previous week.

2. Vist 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!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

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Tim Tebow’s New Book is Not Just for Sports Fans!

If you’re looking for a book of encouragement in a world that seems shaken, grab Tim Tebow’s new book, Shaken: Discovering Your True Identity in the Midst of Life’s Storms.

Sure, Tebow has never cared for an ill parent or child, but he does know a thing or two about caring for others (much to my surprise). He also knows a lot about living in a world that disappoints and learning to draw on God for support.

Read the full review of Shaken here.

Tim Tebow's new book, #Shaken will leave you feeling settled.

Learn About Caregiving From an Injured Swan

swan

A Lesson from a Swan

This summer I learned a lesson in caregiving from an injured swan at the Alaska Zoo.  Trumpeter swans mate for life, and they stick with their partner through migration, deprivation, and even injury. You can read more about my experience and the lesson I learned over at www.anitaojeda.com.

Seeing an injured swan exposed broken places within me from my caregiving experiences–especially for Sarah during her mental health crisis.

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 most inspirational post from the previous week.

2. Vist 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!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).


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Don’t Judge People For Where They Park

You Don't Know Their Story!

parkHating on the Cheaters Who Park in Handicap Spots

I used to steam internally when I saw a perfectly healthy person park in a handicap spot. “What is WRONG with that person?” I would mumble. “Don’t they understand that they could get fined for parking there?”

Of course, what I really meant didn’t sound as nice, but I usually had kids in the car with me, so I filtered myself.

parkAll of that changed when Pedro had cancer. His weight dropped from a healthy 190 to an emaciated 130. My brother-in-law helped me get a temporary permit to park in handicap-designated spots.

I would hang the placard on my rearview mirror whenever I took Pedro to doctor’s appointments or the pharmacy. But twice, I felt deep shame because I became that healthy-looking person exiting or entering a car alone whilst parked in a handicap spot.

The first time occurred when I had to take Pedro to the emergency room at the hospital. He couldn’t even walk to the door without assistance. The doctors admitted him, and when I had to leave a day later, Pedro remained for further tests.

Because of my harsh internal attitude towards ‘cheaters’ who parked in handicap spots, I cringed when I got in my car. I wondered if people judged me, a perfectly healthy person with the temerity to park in a handicap spot.

The Weight of Guilt

The second time it happened, I said something. I had flown into San Francisco, rented a car and drove to a different hospital to pick Pedro up. This time, witnesses saw me park in the handicap spot, and my guilt compelled me to explain.

“I have to pick my husband up, and he can’t walk,” I said to the group of people walking past my car as I go out. They gave me odd looks and continued on their way—I doubt they even realized what I spoke of.

Ever since then, I have squashed my inner Judgy McJudgerton each time she squawks about the rudeness of healthy people who park in handicap spots. “You don’t know their story,” I remind her. I have learned to smile with compassion rather than scowl with condemnation.

After all, I don’t know the story of why they park where they do.

All Those Comments

Which voice will be yours?

We’ve all heard them – those cringe-worthy comments that are delivered with care, but little experience or understanding.  Those phrases that slap a caregiver upside the head and leave one reeling with hurt, confusion and a struggle with faith.  Those sentences that are well-meant but not well delivered.

“God must have needed you to slow down.”

“God is just looking for a chance to provide a miracle.”

“If you just have enough faith he’ll be healed.”

“If you spend an hour every morning in prayer…”

“If you would change her diet…

“I have the perfect home remedy for you, you know those medicines are evil…”

“Have you searched your heart for that un-confessed sinf?”  And I hear the unspoken:  “because obviously your four-year-old doesn’t deserve this so you must have done something.”

These kinds of comments fling themselves at caregivers more often than you’d think. They, along with other pat answers and common consolation phrases jump out of a mouth and crawl around in our heads and there are moments that we want to beg for someone to just BE there.  To listen.  To cry.  To laugh.  To go out shopping.  To provide a book.  To sit with the patient.  To smile.  To understand.

That’s community.

My sister lost her son in an accident years ago, but every time she meets another mother struggling to walk through life without a child, there is an instant connection, usually involving a hug and some tears.

A friend has a daughter with traumatic brain injury.  She has new friends undergoing the same struggles with a child or sibling or spouse.

My mom is coming up on the year anniversary of my dad’s death, and she goes out to eat with some widow friends and sometimes they talk about their spouses, but other times they say nothing at all about it.

I have a new friend, because her son was diagnosed with leukemia in the first week of school (just like mine) and the similarities were haunting.  We bonded instantly, but I find myself without words now, because her boy lost his battle with cancer.

A friend had a miscarriage a couple of years ago and wrote her story.  The response is huge, all voicing the need to know they’re not alone in their pain.

Anita’s husband is the miracle. Pedro is the one who made it, against all odds, but it has taken Anita time to get over the effects that caregiving creates.  She and I developed a bond over the phrases, “Don’t you wish someone would have told us?” and “Can you believe someone actually said that?”

I also have the miracle.  My healthy 16-year-old son, while still struggling with some remnant effects of such strong drugs for so many years, is doing great.  Oddly, and much against my will, I still find myself wanting to talk about it, or hearing the word leukemia and shuddering, or nodding in sympathy when hearing of anxiety attacks or the inability to sleep because of caregiving.

When I meet another parent of a leukemia patient, we have no shortage of words, understanding nods and hugs.

This is community.

This blog is created for community.  We each need a place to know we’re not alone and to hear that we did NOT create whatever catastrophe has struck our loved one.  We need to know that we’re not crazy when we can’t sleep and weight gain (or loss) is typical and somehow, some way and some time, we will be okay again.

November is National Caregiver’s month.  We are looking for guests to share their journey.  Let someone know your story – it might be similar to theirs and you might become that understanding nod, that smile or that hug that someone needs.  Sign up to share YOUR STORY here.  You might be that voice telling a caregiver that they’re not crazy and definitely not alone!

Be the voice to create community with positive comments #caregiverconnections #caregivermonth 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 most inspirational post from the previous week.

2. Vist 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!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

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Calliope Hummingbirds Can Teach us to Trust

 

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Calliope Hummingbirds are Migration Machines

The Calliope Hummingbirds drop by my feeders for brief visits during their very long migration.  The smallest breeding bird in North America, Calliopes weigh about the same as a dime and can reach 7-10 centimeters in length (that’s under four inches long!). During Spring and late Summer migration, they travel between western Canada and the northwestern parts of the United States to southern Mexico, Guatemala, and Belize.

Whenever one lands on my feeder, I pull out my camera and try to snap a few photos. This summer I had the privledge of photographing several spectacular males over the period of three days. Some people have wondered about the white background in my hummingbird photos.  The feeder hangs about 18 inches from our sliding glass door.  In the early mornings, I go outside and leave the sliding glass door and screen open.  That leaves the white curtain as the perfect backdrop.

Each time I see a Calliope, I marvel at the Creator who built in the genetic navigation system for this tiny bird to travel 5,600 miles each year. Along the way, they play an important part in pollinating flowers. Hummingbirds not only migrate without getting lost, they memorize where to find food sources.  They rely on sap from trees (they take advantage of sap wells created by sapsuckers),small insects, and pollen. As their natural sources deplete, we can help by keeping feeders out for them. During peak migration, my ‘pets’ (I have four species that come by) go through 1-2 gallons of sugar water a day!

Second-Guessing God

Any time I worry that God won’t know what to do to help me in my present need (yeah, I actually think that at times), I just have to remember that he has promised to guide me.  He will teach me all I need to know to negotiate each situation that comes my way.  If he has a plan for the tiniest of birds, he has a plan for me.

If God has a plan for the #calliopehummingbird, I know he has a plan for me! #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 most inspirational post from the previous week.

2. Vist 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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