Sometimes It’s Okay to Hide

Caregiver Encouragement

Hiding from CancerWhen the sight of the red-blood-cell bag would become too much, or the pokes too many, or the smell of the chemotherapy would overwhelm my nose—I wanted to escape. To hide. With my whole being I wanted to run.

Run far and run fast.

But he was four. How could I run? So I stayed.

But sometimes, when he drifted off to sleep, his lashless, blue-veined eyelids closed, I would take a walk. Just around the corner from, but on the same floor as the children’s cancer ward, was a “Meditation Room.”

I can still see it.

Carefully constructed to not cater to any specific religion or belief, it was a small room with soft lighting glowing out from behind non-descript wooden cutouts.

I can still feel it.

The benches were hard, as if to remind one that staying long was not an option, but they were wide, in case someone needed to curl up and cry.

I can still smell it.

Some sort of citrusy scent that did not allow a hint of chemotherapy, blood or medications. Someone had made an effort to make the room smell fresh, but somehow a touch of “hospital” remained.

I can still hear it.

Thickened walls meant you couldn’t hear the hospital noises but the soft lighting was still fluorescent because the buzz never stopped. Hospital announcements would still intrude on the silence, because they were too important to screen out.

Meditation RoomIf someone was already in there unspoken rules were observed. No talking. Pay no attention to red-rimmed eyes. Do not use cell phones. Acknowledgement was fine, but do not talk about your ill child. Nod and move to your own isolated spot.

Hiding from reality. Hiding from fear and from the cancer ward – that place where joyful and optimistic children were dying.

Sometimes I felt guilty. Hiding like that. Was I running? Avoiding? Selfish?
Oh I don’t think so. I searched for my Creator, my Physician, my Savior and my Friend. I needed those moments on those hard benches with the soft lighting and the soft buzzing and the soft silence in order to face the hard days ahead.

Sometimes we need our soft and loving God to face whatever is ahead.

Sometimes we need our soft and loving God to face whatever is ahead. #cancer #caregiving #cancerencouragement Click To Tweet

Don’t forget that, my friends! Hide away, even if just for a moment, and renew yourself in Him!

Psalm 91:

He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
2 I will say[a] to the LORD, “My refuge and my fortress,
my God, in whom I trust.”
3 For he will deliver you from the snare of the fowler
and from the deadly pestilence.
4 He will cover you with his pinions,
and under his wings you will find refuge;
his faithfulness is a shield and buckler.
5 You will not fear the terror of the night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in darkness,
nor the destruction that wastes at noonday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only look with your eyes
and see the recompense of the wicked.
9 Because you have made the LORD your dwelling place—
the Most High, who is my refuge[b]—
10 no evil shall be allowed to befall you,
no plague come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways.
12 On their hands they will bear you up,
lest you strike your foot against a stone.
13 You will tread on the lion and the adder;
the young lion and the serpent you will trample underfoot.
14 “Because he holds fast to me in love, I will deliver him;
I will protect him, because he knows my name.
15 When he calls to me, I will answer him;
I will be with him in trouble;
I will rescue him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

Community Spotlight

Today’s spotlight shines on Barbara and her post about caring for the elderly.  Check in out over at Stray Thoughts: Click here!  

Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for ENCOURAGEMENT FOR CAREGIVERS.  Share a link that will encourage a caregiver. If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link.

For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest.

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

The whole point of the link up is to make connections and form community with other caregivers, so don’t forget to visit the person who linked up before you as well as the person who linked up after you.

If you read something that moves you, share! Tweet, pin, share on Facebook, whatever it takes to draw others into to our caregiver stories. All too often, caregivers suffer in silence because they don’t think anyone cares to hear their voice. We care! If you’d like to join the Caregiver Connections Pinterest Board (so you can pin your caregiver-related posts), just drop me an email at anita at blessedbutstressed dot com.

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Sleep for Caregivers

More than a far-off dream!

Sleep can be something caregivers dream about. Let’s make it a reality!

Sleep.

Lying in bed, afraid to let go.

Visions of blood consuming the house (diagnosis of Leukemia).

Listening for breaths, restlessness or stirring.

Worry of fevers and rush trips to the ER.

Sleep.

Heart pumping fiercely instead of relaxing.

Memories of fighting for life in those mid-night hours.

Rummaging through to-do lists and appointments for tomorrow.

Wonder if a person can really take one more day of this.

Sleep.

Craving…Demanding…Eluding caregivers.

It’s a caregivers nightmare – that constant loss of sleep.  Sometimes the lack of sleep is demanded by schedule and other times ordered by anxiety.  Caregivers live on high alert when things are catastrophic and worry when things have slowed to a waiting crawl.

Here’s the deal: in order to get sleep, caregivers have to let go.

In order to sleep, #caregivers have to let go! #cancercaregiving #caregiving Click To Tweet

A few moments of time or an entire night.  Our brains and our bodies require rest and we must let go.  Our own systems won’t be able to handle prolonged loss of sleep.  So how will we care for our patient?

Sleep was my biggest dilemna as a mom to a four-year-old with leukemia.  How do I choose sleep?  Ten years after chemotherapy, I still do not completely have the answer to that question – because I would never give up the time I spent helping my son.  So how do I let go during something catastrophic?  Yeah, I don’t have all the answers, but I do have a few suggestions:

  1.  Accept help with menial things so your time goes more where you want it.  Let someone mow your lawn or wash some dishes instead of staying up late to finish those jobs.  Most people are happy to help while you’re taking care of your loved one.
  2. Choose what to fight for and maintain, and what to let go.  It’s so hard to let things go when living in denial.  But really, who really cares whether or not you send out those Christmas cards anymore?  Let it go…
  3. Exercise.  No matter how tired.  Do SOMETHING to work off that excess adrenaline that stockpiles in our bodies when we love the person whose life is on-the-line.
  4. GO TO BED.  As ridiculous as that sounds, I found it astonishingly hard to do.  Just one more task, just a few more minutes, avoid the nightmares.  Keep going.  Refer here to numbers one through three.  GO TO BED

Seriously.  Grab moments and let your brain relax.

 

Community Spotlight:

This week’s spotlight shines on us from Jill at MemoryMinders  She shares with us:  Refill Your Leaky Bucket – some ways to take care of yourself and get refilled a bit! Click here to read some great suggestions.

Link up below to get your blog highlighted!

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Caregiver Resources – Write Things Down

For when your mind stops spinning.

New caregivers: Write down the advice you receive – it might come in handy later when you can deal with it!

Write things down.

That’s probably one of the biggest and best pieces of advice I can give any caregiver.

I distinctly remember sitting across from the Head Oncologist of my four-year-old son’s teams (three groups) of doctors.  He was an attending physician/professor and coordinated two hospitals’ treatment protocols in connection with a local university.  Impressive?  All I remembered about him (the preceding information came later) for the first year of treatment was that he was bald and shot words at me like lightningClick here to read more about that!

My mind reeled that first week of diagnosis, days of exams including some pretty horrific-sized needles, some life-saving moments and then launching the treatment protocol.  I remember nurses and doctors advising me to “take care of myself.”  They also offered many phrases into the air while they zipped in and out of our isolated room, scrubbing thoroughly and muttering about This Society or That Resource.  I heard them.

The words were just beyond my grasp.

We floated along in the surreal fuzz that envelops parents of critically ill patients like a shroud.

Children’s Miracle Network was mentioned.

Candlelighters came up.

Make-a-wish foundation, I heard, but given the children on the ward that were getting wishes granted, I assumed it was for the dying.  In the denial stage I was in, it never occurred to me to check into it.  My child couldn’t die…could he?

Ford Family Foundation brochures were in the parent waiting room.

We fought daily for the life of our child.  These phrases continued flying over our heads.

We missed them.

Four years later, my son, with normal hair, energy and health, was watching TV with this wearied mom when something about a kid with leukemia going to Disneyland through one of the above-mentioned charities.  Why?  Because the kid wished for it.

“Mom!” exclaimed Andrew, “Why don’t I get to go to Disneyland?  I had leukemia!”

To this day, I don’t have a justifiable answer to that.  It’s simply that I was so overwhelmed with saving my son’s life, I never thought of getting things along the way.  By the time I did, no one was talking about it any more.

Man, I wish I would have written stuff down as it was thrown at me over the top of a mask, across the exam table or waved at us as we exited the hospital.

The resources are there.

Write them down and the next time someone asks you how they can help you?  Hand them the list and have them check into it for you!

 

Caregiver Spotlight

We hope you click through on some of the links above – these are great resources!

 

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A Staph Infection filled with Fear

Fighting the infection of fear with the antibiotic of trust

Fight infection with God’s antibiotic of peace.
Exodus 14:14

My boy has a staph infection.  Undetermined source. Scary. Fever-inducing. Icky. Doctor monitored.  Antibiotic drowned.

But it’s OK.

Because my boy is 17 and cancer free.

As awful as a staph infection is now, it’s not what it used to be!

When Andrew was four, we drove home from my high school reunion, happy to have been around people for the first time since Andrew’s diagnosis of Acute Lymphocytic Leukemia just a few months prior.  Half-way through the trip, Andrew’s temperature went sky high and we immediately called the oncologist who called the nearest hospital.

We raced into the ER and were rushed through triage where a tiny spot was found on Andrew’s side;  From there it was only a matter of moments until Andrew was ensconced in an isolation room with an antechamber that required any and all who entered to fully gown and mask up.

Trauma.

The surreal feeling of a relatively new cancer diagnosis was compounded by the head-to-toe garb required just to read Andrew a story from a sanitized book.  Visitors were limited to just daddy and mommy, which was tough as we were hours from home and had our girls with us.

Fear invaded worse than the infection.

Where did he get that little dot in his side?  We’ll never know for sure, although we like to blame it on the slide.  All we know is that it ballooned up and his temperature raged for days and he remembers absolutely nothing about the entire time, because, he says,

“It’s selective memory.”

Now Andrew sits in the living room, his cheek swollen to twice it’s normal size.  He has a sore spot from four injection sites and a large bottle of infection killers mocks me from the counter.  Andrew shrugs, it’s no big deal.  Yeah, it hurts, but he’s been through worse.

For him, it’s no big deal.

But I’m the caregiver from those years when he was four, five, six and seven and a staph infection meant life or death with only moments of antibiotics making that difference.  I’m the one that gowned up to enter my boy’s room.  I sent the girls home with friends in order to care for my boy.  Medication time was routine and countless bottles sat on my counter.

My husband and son texted from Urgent Care on Sunday:  “It’s a Staph infection.  Good thing we came in.  Dr is concerned but will try shots and meds rather than hospital for tonight.”

No big deal.

So why did I sit down and cry?

Apparently words like “staph” infection and “hospitalization” are trigger words for me.  Actually, I have many trigger words – cancer, Leukemia, chemotherapy.  The list goes on.  I kick up my fight-or-flight response with very little provocation, it seems, and it all stems from those years of fighting for my son’s life.  Years of trying to be strong.  Months of wading through phases of treatment. Weeks of waiting for meds to kick in.  Days of waiting for blood results.  Hours of hospitals, doctors and nurses.  Those memories trigger my fears.

Those trigger words are like a nasty, sick infection. A staph infection that gets inside and eats away anything good and kills anything within it’s reach.  They can make my heart race.  Trigger words can rob my soul of peace.  Fear can invade worse than any infection.

Except, my caregiver friends, we have the antibiotic.

Jesus assures us of the End of the battle with sickness and despair.  I can take a rest from my caregiving stress and relax, knowing that God has got me, and even more importantly, to this mom, He’s got my boy.

Even in the midst of caregiving, take a moment and relax in God’s presence and in His peace.  Let the infection of fear seep out of your heart and soul.  God will never leave you nor forsake you.

When the #staphinfection of fear hits you, #caregiver, hang onto God's antibiotic! #caregiverconnections Click To Tweet

Today’s featured post from Caregiver Connections is here!  Click and read and then link in your own post for a chance at being featured!

 

Guidelines

In order to make this link up user friendly AND pertinent to caregivers and their needs, please make sure that what you link up follows the guidelines for the week. This week is for CAREGIVER Stories.  Share a link to your story of what it’s like to care for someone else (or have someone else care for you). If you aren’t sure if your link is appropriate, feel free to email me at anita at blessedbutstressed dot com and ask!

We will delete links that aren’t on topic in order to keep the link up a true community resource. We WILL contact you first and let you know that we will remove your link.

For non-caregiving related links, we invite you to participate in the Inspire Me Monday link up over at www.anitaojeda.com.

By linking up, you agree to receive weekly reminders about the link up.

Do look for the caregiver boards on Pinterest.

Do link up more than one post!

Join our Facebook community, too! It’s easy, just click that button over on the right! —->

The whole point of the link up is to make connections and form community with other caregivers, so don’t forget to visit the person who linked up before you as well as the person who linked up after you.

If you read something that moves you, share! Tweet, pin, share on Facebook, whatever it takes to draw others into to our caregiver stories. All too often, caregivers suffer in silence because they don’t think anyone cares to hear their voice. We care! If you’d like to join the Caregiver Connections Pinterest Board (so you can pin your caregiver-related posts), just drop me an email at anita at blessedbutstressed dot com.

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Crutches for a Caregiver

Use those crutches - they help us keep moving!

Caregivers have to survive along with the patient.

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

Crutches for a caregiver.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Praise God for crutches.

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

 


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Join the Club – Three Easy Tips for Caregivers

Carol

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

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

 

 

1. Make it a priority to participate.

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

2. Take advantage of offers.

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

3. Be brave and share.

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


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

- from shared wisdom gleaned from experience

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

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

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

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

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

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

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

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

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

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

What if we could have known?

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

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

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

Merry Christmas!

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

Ten Years Since the last Day of Chemo

Celebrate!

Ten years since the last day of chemotherapy. Celebrate!

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

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

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

I wanted to celebrate.

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

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

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

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

Big.  Huge. Gigantic.

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

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

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

Celebrate.

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

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

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

Celebrate!

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

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

Praise God!

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

My boy is a senior in high school.

Ten years of remission.

120 months to recover from three tough years.

520 weeks without chemotherapy.

3,650 days without cancer.

From then to now – 10 years to celebrate!

Praise God and Celebrate!  His love endures forever!

Celebrating 10 years since chemotherapy! #leukemia #cancer #chemotherapy Click To Tweet
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The Difference Hair Can Make

When the beauty of love shines through the ugly of cancer

The difference that hair can make…

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

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

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

I nodded.

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

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

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

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

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

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

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

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

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

15 inches.

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

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

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

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

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

When the beauty of love shines through the ugly of #cancer #locksoflove #childhoodcancer Click To Tweet
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The Blood and the PTSD

What Jesus can do with one - for the other.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blood.

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

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

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

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

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

Yes, Jesus, let the blood overtake me.

Let it wash over me.

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

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

Please Lord, dry my tears.

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

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

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

 

 

 

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