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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Love – It Means Everything (especially when caregiving)

Just when you think you can't handle this caregiving stuff...your kids show you the way.

Just when you think you can’t handle this caregiving stuff…your kids show you the way.

In this series of 31 Days of Unexpected Blessings from Caregiving, I’m reviewing our days, weeks, months and years of cancer caregiving and all it’s repercussions.  I’m looking for specifics, for blessings and things I never understood before.  In searching my journal I sometimes come across a moment so beautiful I wrote it down to treasure and I’m so thankful.  Here is a moment of unexpected blessing I treasure.  No moral of the story, no lecture – just pure love!

Both of my daughters were there when Andrew cried bloody tears, and both girls experienced the shock of a cancer diagnosis, when anemia or just about anything else was expected!  My girls were introduced to medical care for their brother at a young age.

My children don’t always get along and let’s face it, Andrew is “the little brother” and he can be obnoxious sometimes.  But it sort of evens out in the end, because Larissa can be a little bossy and Karina can be just a tad whiny!

But you know what?  Maybe my children are pretty cool, too.  Maybe they fight, but they also stick up for each other at times, and the girls’ ability to put up with this whole leukemia situation has been pretty amazing.

Three days after diagnosis, we were already pretty sick of the hospital and Andrew was thoroughly missing his sisters although he wasn’t quite ready to admit it.  Whenever I talked to them on the phone, though, he would struggle up and hold out his hand for the phone.

That evening I held the phone up to Andrew’s ear because both his hands and arms were sore from needles and/or filled with tubes. He told them all about his “pokes” and how it didn’t seem fair, but he was OK.  He described to them the “squeeze thing” (blood pressure cuff) that “really hurts, but doesn’t REALLY hurt.”  Suddenly I saw his face light up. He closed his eyes as though savoring the best ice cream in the whole world, sighed gently, smiled and said softly into the phone, “I love you, too.”

Love - It means everything! #write31days #caregivercomfort via @caregivermom Click To Tweet

Find YOUR Refuge

Trees draw us with their comforting branches and gentle whispers.

Trees draw us with their comforting branches and gentle whispers.

I’m linking up with the Five-Minute-Friday group. The word is supplied and we write! This week’s word is “Tree”.
Go!

When I was a little girl I found refuge in three things; reading a good book, writing whatever came into my heart and sitting up in our sycamore tree. Sometimes I would take some paper, or a book, and combine my passions to create the best sanctuary.
I used to climb the tree to escape my chores, hoping my mom wouldn’t think to look up and knowing that even if she did, it would take me awhile to climb back down and finish my jobs. From my perch up high I could look all over the neighborhood and sometimes I could see my dad driving home from work long before he neared the house. I climbed up through the shade to soak up the sun and I swayed in the wind pretending I was flying. I daydreamed and practiced conversations and sang solos to which the only the leaves could applaud.
My tree was my haven.

Obviously moving away from home and growing up made my retreat obsolete. But I hung onto my reading and my writing and added music and walking in nature to my “me time.”

One of the hardest parts about being a caregiver to a long-term catastrophically ill patient is that you lose many of your refuge options. I found myself without walking time, unable to concentrate on reading, frozen by my inability to write and with nowhere to sing my heart out. And climbing a tree? Not an option!

After figuring out that I had many of the symptoms for PTSD I set out to reclaim my sanctuaries. I made sure to walk, even when I didn’t feel like I had the time. I played favorite songs and sang out loud in the car. I breathed more deeply when anxiety hit and learned to create my tree-top experience in my own head in whatever environment I found myself.

I don’t climb trees anymore–but I found myself, just the other day, while raking piles and piles of beautifully colored leaves, blessing my Creator for making majestic and sheltering trees. I thank Him for sheltering me in His arms when life gets rough and I’ve learned to rely on Him to soothe my soul, wherever I am located. I’m blessed to be able to recreate the serenity I learned while perched high in the branches of my sycamore tree.

-Carol
If you’d like to join the FMF fun, click on the button!Five Minute Friday

The Truth About Heroes

Anita Strawn de OjedaI’m linking up with Lisa Jo Baker and the Five-Minute Friday flashmob—our goal? Write for five minutes about the word of the week. I confess that this week, I wrote for a little longer than five minutes.

The Truth About Heroes

I used to have an addiction to People Magazine and Entertainment Tonight. I loved knowing the latest scoop about the heroes of American culture. Movie stars. Sports heroes. Rock stars. Super heroes.

But not any more. While those people may be heroes to some, my definition of a true hero consists of this: a family member who sets aside or delays his or her life goals, aspirations, plans and desires in order to care for a loved one who needs above normal care.

Heroism doesn’t consist simply of a single deed or heroic act. True heroism lies in daily doing for someone else what they can no longer do for themselves. The truth is, our American culture doesn’t recognize those who plod along, daily doing for others.

It’s not sexy like a movie star to change a loved-one’s Depends throughout the day. There is no jubilation like a touchdown at the end of the day for a mother who has to quit her job to take care of her adult daughter who suffers from a traumatic brain injury. No one pays big bucks like a rock concert to read about the quotidian life of a caregiver who cares for a spouse with Alzheimer’s. While masses of people line up to buy tickets to the latest movie about super heroes, it wouldn’t occur to them to think about the super heroes living next door or down the street.

Our country has designated November as “National Family Caregivers Month.” What will you do to show your appreciation for a family caregiver? The truth is, caregiving often overwhelms the caregiver because of isolation and despair (a loved one with Alzheimer’s or a special needs child often don’t understand the simple act of thanking those who care for them).

You don’t have to give a family caregiver a free trip to Florida to show that you appreciate all that they do for their loved one. Try one of these simple, low cost ideas for showing your appreciation to a true hero that you might know:

-Send them an encouraging message (on Facebook, in the mail, via text).
-Buy them a gift card to Starbucks and offer to take over the care for an hour or two.
-Bring a meal to the house.
-Offer to run errands.
-Buy them a funny movie (because laughter is good for caregivers, too).
-Make a habit of checking in with a caregiver once a week and listen to them.
-Ask them how you can help.

If you’re a caregiver, please comment on ways that you would appreciate help (everyone is different). If you know a caregiver (if you’re not sure of the definition of caregiver, click here), leave a comment about your commitment to do something for a true hero this month.
If you’d like to join the flash mob, click on the button! Five Minute Friday

Living In Between

Living In Between My daughter will stand in between Pedro and I in exactly nine days and when the pastor asks, “Who gives this woman in marriage?” we will say, “We do!”

Meanwhile, in the days that march inexorably towards July 7,  I struggle in between joy, frantic worry that I’ll never finish everything on time, and a deep sense of gratitude that our oldest baby will have BOTH parents at her wedding…

http://wp.me/p2UZoK-7t

The dress is in between what it was when I made it and what it will become for my daughter’s wedding.

It almost didn’t happen.  Twelve years ago, Pedro’s non-Hodgkin’s Lymphoma relapsed (he’d only been in remission for a few weeks) with a vengeance–this time, it crossed the blood-brain barrier and entered his spinal fluids.  He lost forty pounds in two weeks.  He had excruciating headaches and the muscles in his face froze.  For the next five months, his life hung in the balance as doctors pumped him full of ‘rescue chemo’ and I traveled in between Bozeman, MT and San Francisco, CA each time he started ‘circling the drain’.

Each time, God intervened.

And so I set aside my worries (will I finish remodeling the wedding dress before we leave tomorrow?  How will two college students survive on tiny incomes during their last two quarters of college? What will we forget as we load the van for the trip?) and pause to speak my gratitude to God who brought our little family through the trial–different from what we were before, but stronger, more faithful and definitely more grateful than we had been.

I've lived in between diagnosis and deliverance. I can wait patiently for what God brings next. Click To Tweet

God is good.
Five Minute Friday