Caring for a Child with Albright’s Hereditary Osteodytrophy

Learn to balance #caregiving with #selfcare and everyone will be happier. http://wp.me/p2UZoK-AD via @blestbutstrest

 

 

Meet: Amee
Caregiver Connection: Amee’s siblings attended elementary school with my daughters, and I met her for the first time after her involvement in helping her alma mater (where I happened to work) win a half a million dollars in the Kohl’s Cares competition about six years ago.
Blog: Inspired Housewife
Who she cares for: Amee and Michael’s son, Tristan, has a rare metabolic disorder and has been diagnosed as being on the autism spectrum.
Favorite Bible verse: “Rejoice in hope, be patient in tribulation, be constant in prayer” Romans 12:12 ESV.

Almost eight years ago I gave birth to a beautiful 5 lb 1 oz baby boy named Tristan. He was our first and we were caught up in the bliss of everything newish baby.

Tristan was a tiny baby and we had many issues with his health from the start. He had some normal baby problems like latch issues with breastfeeding, but his biggest hurdle was he would not grow. He would eat and eat and eat and not gain weight.

http://wp.me/p2UZoK-ADLittle did I know that this trend would continue throughout his life. I have not thought of myself as a caregiver in classical terms like taking care of a very sick elderly person or children with much worse issues than my son, but I would say I am one in terms of the fact that many people could not or would not want to be my son’s mother because of the care he needs.

To make a long story shorter, Tristan was behind in all the typical baby milestones. At six months he got glasses, at seven months he was diagnosed with Albright’s Hereditary Osteodytrophy which is a very rare metabolic disorder, and at three he was diagnosed with autism. He is sensitive to gluten and dyes and because of that I had to actually learn to cook and not just burn water. Being his mother has been a journey and not one I would wish on any parent, but it is a journey that has made me a stronger and better woman.

The care for my son requires a lot of patience and dedication because he does not sleep much. He goes in cycles where he will sleep a good eight hours a night, but then he has longer cycles of sometimes four hours or less a night of sleep. These come on at will and nothing we change or do makes them stop. During these non-sleep cycles, one of us has to be up to manage him because it is unsafe for him to be up alone. We have alarms on all our doors and high locks because he is known to be a runner and has been found at 2 am running naked through our neighborhood.

I have to cook a special gluten-free diet for him, otherwise the gluten affects his behavior, his speech and causes him to regress. Before we took gluten out of his system he would scream 60-70% of his day and bite himself until he bled like a wild animal. It was a very rough time in our and his life. Our son has grown up in therapy rooms working hours and hours with various therapists and therefore I am called a “waiting room mom.” We don’t do the normal after school activities because most of our free time is taken up with therapies or other issues related to our son.

He also requires growth hormone shots due to his metabolic disorder, because without the growth hormone he does not grow. He lived in 2T/3T clothes for nearly three years which was hard for me as a mom, but great for the pocket book. There are a many things we need in place for our son to keep him from getting out of hand and it is completely exhausting both physically and mentally.

He is a wonderful little boy about to turn eight, but there are days as his caregiver where I wish I had a break. The stress of being his mom has acerbated my auto-immune disorder which I am told is not uncommon with most special needs mothers and caregivers.

To relieve my stress as a caregiver I go to therapy monthly to verbally vomit to a third party so I do not overload and overwhelm my husband. I also started back in January of this year making my own health a priority. Not only did I make major changes to how we ate, but I made sure that at least 4-6 days a week I worked out at home 30 minutes a day. Because of those changes I lost 16 pounds and 16 inches, my skin and hair have never looked better, and it helps me take care of all of my children way better.

#Caregiver parents have to make their own relationship a priority. http://wp.me/p2UZoK-AD via @blestbutstrestAnother thing my husband and I recently started, was making us a priority again after many years of putting our relationship on the back burner. We spend one 24 hour kid-free day a month while our nanny (who is experienced working  with special needs children) watches our three kids for us. In addition, we also started implementing date nights both in and outside of our home more often as well. We make sure to spend an hour of one on one time no matter how late it gets. By doing this, our family life has been completely transformed.

As a special needs mom and caregiver you go through a roller coaster of different emotions, but one of the things that has kept me sane is prayer. When Tristan was not even a year old and we thought we were losing him, it was prayers that got us through. When we needed to figure out how to get our son on growth hormones, prayer came through again.

There is a reason my son is the way he is. Prayers and the faith that there is a bigger picture out there that I don’t understand have sustained me in my caregiving journey.    (tweet this)

If you want to know more about the early struggles of our son check out “The Tristan Project” over on my blog.

Three Simple Steps to Unlock the Secret to Happiness

Don't let your happiness rust shut.  Exercise it! http://wp.me/p2UZoK-A6 #CoffeeforYourHeart via @blestbutstrest

 

 

Dear Friend,

You are brave. Crawling out of bed on a cold, dark morning when you’d rather cocoon yourself in the comfort of your covers takes bravery. Whether dark depression or mild dissatisfaction whispers in your ears that the solution lies under the guise of more sleep—you’ve ignored it and taken the first step. That takes courage.

But now what? How can you face the day when the weight of all the thoughts in your head press down and slows your steps, your thoughts, the beating of your heart?

The secret to happiness lies in three simple steps. I know. I’ve tried them and they work. Continue reading

Caregiving for a Child on the Austism Spectrum

MCC5

 

 

Meet: Sarah Ann
Caregiver Connection: I met Sarah Ann through the #write31days challenge in October. Her amazing story caught my attention, and she graciously agreed to guest post and share part of her journey.
Blog: Faith Along the Way
Who she cares for: Joy, her autistic daughter.
Favorite Bible Verse: “I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.”  Psalm 16:8

As the oldest of four children, I was born a caregiver. At an early age, I was feeding babies and changing diapers, and quickly blossomed into the role of the responsible mother’s helper and big sister.

Being a nurturer prompted me to get my degree in Special Education and my role as a caregiver continued as I shined God’s love into the lives of my extra special students.

My role of caregiver changed drastically in the second year of my marriage when my husband was diagnosed with cancer and I doted on him during radiation and chemotherapy. Continue reading

Five Ways to Help a Caregiver This Thanksgiving (Inspire Me Monday)

5 Ways to help a #caregiver at #Thanksgiving http://wp.me/p2UZoK-yS via @blestbutstrest #CaregiverMonthThanksgiving means different things to different people. For men, it might mean football (either as a couch potato or out on the front lawn). For women, it might mean cooking for hours on end all to have the feast disappear in thirty minutes and turn into hours of clean up.

Continue reading

When a Community Becomes a Caregiver

MCC5

 

 

Meet: Bethany
Caregiver Connection: I met Bethany through the Five-Minute Friday twitter parties (where scads of bloggers meet each Thursday night to chat, encourage each other and wait for our prompt from Kate Motaung).
Who Cares for Her: Bethany discovered the beauty of a community that stepped in to act as her caregiver.
Blog: You can find more of Bethany’s story and beautiful words of encouragement at www.BethanyBoring.com

Cancer has no sympathy. It comes without warning. The word just slipped right off my doctor’s tongue as if he had said it before. Of course he had, but not to me. Not to a young wife, mother and family minister. Not to someone that is needed by so many others. Not to someone who desperately lived each day to fill the needs of others. Not to someone who had no clue how to think of her health first before the needs of others.

How dare he utter that curse word—cancer—in my direction. How dare God allow cancer to attack my life right now? I was doing what He wanted me to do. He was supposed to protect me. How dare He allow this to wreck my life? I became so very angry at God in that moment. Continue reading

Be Still and Let God Fight

carolslaughingkids
I thought that once my children were out of the toddler stages, life would become easier. I thought that once they could do more for themselves I wouldn’t be doing as much for them.

I thought when my son finished cancer treatment I could “return to normal” and have time for myself. I thought if I didn’t teach full-time I could have time to write and think and process. I thought that as my children spent less time at home it would mean my home would stay clean.

Are you done laughing?

Yes, I freely admit it. I was delusional.

But I was happy in my delusion and often I try to continue those thoughts. Someday I’ll have all the time I want to write. Someday I will have a clean house. Someday I will do nothing but read. Someday I will only do exactly what I WANT to do for days on end.
Wait. That doesn’t sound perfect. Because to do those things I wouldn’t be running off to watch my daughter’s basketball game. I wouldn’t be driving my son to practice. I wouldn’t be getting my daughter to early morning rehearsal. I wouldn’t be hearing my kids laugh hysterically as they chase each other down the hall. I wouldn’t hear loud piano playing and raucous singing. I would miss the family eating together and the grumbles that it’s “too early for showers.”

A mom’s life is chaotic and hectic and beautiful.

A couple of years ago I found a new favorite verse: “The LORD will fight for you; you need only to be still.” Exodus 14:14

I love it. God tells me to be still. I don’t have time to be still. Except in my head.
I can worry and fuss and wish things were different. Or I can still my rushing thoughts and remind myself that “God’s got this.” And I can relax.

That doesn’t mean I don’t drop everything to go get my boy’s forgotten lunch. It doesn’t mean I skip the three hour drive for Parent Weekend at college while my husband stays home with the other two for their SA masquerade party. It doesn’t mean I don’t scramble for that last minute permission slip or turn around for the homework left on the printer. It does mean I only have time to write during five-minute-Fridays because I barely have five minutes to sit in my bathrobe as I holler over my shoulder that the lunch is on the counter and remind them to get a coat.

But I can relax. A mom’s life is chaotic and hectic and beautiful, but God will fight for me.

Caring for a Spouse with Glioblastoma Multiforme (GBM)

MCC5

 

 

Meet: Shorna
Caregiver Connection: Shorna, who currently works as registered nurse in the ICU,  graduated from high school with Carol and Pedro back in 1984.
Who she cares for: Her husband, who was diagnosed with Glioblastoma Multiforme (GBM)
Favorite Bible verse: “When I am afraid, I will trust in him.” Psalms 56:3

In the space of one year, our lives went from miracle to medical mystery. On December 15, 2004, after a 15-year wait, God gave us our miracle son, Jeffrey. Life felt complete for Jim and I—our family had expanded to three and life seemed as if it would only get better.

By December 15, 2005 things had drastically changed. In the week leading up to our son’s first birthday, Jim, a retail manager in Walla Walla, called in sick and went to bed, a rare occurrence during over 15 years of service. He had no cough, nor sniffles, so I wondered why he stayed home. Continue reading

Pumpkin Spice Waffles

#PSL lovers, you'll love these pumpkin spice #waffles! http://wp.me/p2UZoK-z9

 

 

If you love all things pumpkin, crisp mornings and a hearty breakfast, you’ll love these pumpkin spice waffles.  Made with things like whole-wheat flour, flaxseeds and pumpkin puree, one waffle will make your stomach sign with  contentment from breakfast to lunch.

You can make your own pumpkin puree from those leftover jack-o-lanterns, or buy canned pumpkin–either way, you’ll love these waffles–and not just because they’re good for you!

(This is not a sponsored post–I add the links because I believe in the products)

Pumpkin Spice Waffles
©2014 Anita Ojeda
Yields 6 Belgian Waffles

Mix the following ingredients in a medium-sized mixing bowl.
3 cups whole-wheat flour (I prefer non GMO flour such as Prairie Gold by Wheat Montana)
1/4 cup ground flaxseed (optional–but why not?!)
2 Tbs. baking powder
2 Tbs. brown sugar
1 tsp. cinnamon
1/2 tsp. salt
1/2 tsp. ginger
1/4 tsp. nutmeg

Make a well in the dry ingredients and then add:
1/8 cup canola oil
1/2 cup pumpkin puree
1 tsp. vanilla
2 eggs

Mix well until all of the dry ingredients are incorporated into the wet ingredients. Slowly add about two cups of water–until the batter reaches the perfect consistency for your waffle maker–my husband describes it as ‘runny but thick.’ The amount of water you need will depend on the consistency of your pumpkin puree. Enjoy!

What’s YOUR favorite way to eat pumpkin? If you’ve never tried a pumpkin spice waffle, try this recipe! (tweet this)

What's YOUR favorite way to eat pumpkin? Try these pumpkin spice waffles! http://wp.me/p2UZoK-z9 via @blestbutstrest

The World Needs YOU!

I can always pray. I can listen. I can tell you that God created you for a purpose. http://wp.me/p2UZoK-z2 #hope via @blestbutstrestThe world needs you! Yes, you. Don’t give up. Don’t check out. The world needs you.

Despair starts with a lie that seems like a feather but feels like lead.

Maybe the deceiver whispers in your ear that the things that others have done to you make you worthless, without value, ruined, not good enough.

Perhaps he parades an endless line of ‘perfect people’ through your life to jab at the tender skin of your self worth and whispers words of comparison in your heart until you believe them (she’s so skinny, her nose so perfectly shaped, don’t you wish you could wear a dress like that and look like she does). Continue reading

Caring for a Parent with Multi-infarct Dementia

MCC5

 

 

Meet: Leah
Caregiver Connection: Leah is a pharmacist and a writer who, together with her sister, had to help their mom decide what to do when multi-infarct dementia quickly changed their mother’s abilities to care for herself.
Blog: Point to Jesus

God’s Care in the Caregiving

It hit us out of the blue—only it didn’t, really. We just were not looking for the signs.

Multi-infarct Dementia. Why? How? What do we do with this?

In January, my Mother lived independently, driving, shopping, going to church and Bible study, and having lunch with her girlfriends. By the end of March, she couldn’t figure out how to turn her television off or answer her telephone. By the middle of April, it was obvious she could no longer live alone. She needed more care than my sister or I could give her. Continue reading

Caring for a Spouse with Vascular Dementia

MCC5

 

 

Meet: Barbara
Caregiver Connection: I met Barbara through the #write31days challenge and her series on “Dealing with Dementia’s Demands”
Blog: http://scrapper123.blogspot.com
Who she cares for: Her husband, who suffers from vascular dementia.
Favorite Bible verse: Psalm 116:1-9

Wearing hats is not who I am. They just aren’t comfortable; and most of the time my head sweats from them, especially the wool winter caps! I do “wear hats” or labels that define who I am to those in my life. For instance, to my parents I was Daughter; to my grandparents I was Granddaughter; to my brothers I am Sister; to my children I am Mother (or other variations); to my grandchildren I am MeMaw; and to my friends I am Barbara, or Barb, or B. J. And to my husband, not only am I Wife, but I am also Caregiver. And recently, after successfully completing the Write 31 Days challenge, I have come to realize—I am a Writer—at least an amateur wanna-be writer! Continue reading

Inspire Me Monday–What Inspires YOU?

National Family Caregivers Month What's YOUR story? http://wp.me/p2UZoK-xp via @blestbutstrest
What inspires me this week? Family caregivers and their millions of selfless acts of kindness towards wives, husbands, children, parents and sometimes even acquaintances when a sick person has no family nearby.

Family caregivers don’t receive a salary or use a time card to keep track of the time spent and the services they render for loved ones who have fallen ill. And sometimes, the ones they care for may feel resentful towards them.

It’s a lonely calling, whether a caregiver steps in for a parent who can no longer make wise decisions or whether the caregiver holds down the fort during a catastrophic illness.

It’s likely that you or someone you know cares for or has taken care of a family member—in myriad ways such as preparing special diets, being the legal guardian of a parent, making decisions about assisted living and nursing homes, changing diapers, or performing routine medical care that nurses usually perform.

Take a look around you, and identify a caregiver or two. Take time this month to let them know their acts of love and kindness don’t go unnoticed. Reach out and let a caregiver know that YOU care for them. (tweet this)

  • Send a card,
  • Give a gift card,
  • Come by and just sit with them and listen to them
  • Just do something, anything, really, so that they know they are not alone in their caregiving journey.

What inspires YOU?

Join us at Inspire Me Monday—where we strive to build a community by sharing your links on social media and leaving comments on every one’s blog.

Here are the lovely co-hostesses of Inspire Me Monday: Angie Ryg, Cindy Krall, and Denise J. Hughes.  Drop by and say hello and see what their blogs are all about.

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 (just ONE, please).

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 :).

I found inspiration for my Monday at #inspirememonday. Join us! (tweet this)

So, go ahead! Take the plunge and share your most inspiring post with us!

 

Angie Ryg

 

An Unexpected Turn in Conversation

The brilliant moon invites an uncomfortable turn in conversation http://wp.me/p2UZoK-yk via @blestbutstrest

 

 

The weight of the full moon seems to slow its journey and it takes longer than usual for the light of the sunset to fade from the sky. The girls in the van chatter eagerly about the volleyball game and their surprise victory.

The girl who called shotgun arranges phone chargers for the girls in the back seat, and occasionally joins in the conversation. “I love the full moon,” I tell her, “in the morning the moon is so bright that when I look out my window I think it’s snowed the night before.” I find small talk difficult. What do I, a middle-aged chaperone, have in common with teenage girls?

I hear the phrase ‘of mice and men’ from somewhere in the back. That’s more like it! “Of mice and men!” I exclaim. “That’s a line from one of my favorite poems by Robert Burns.” Continue reading

You Do It Because It’s Your Turn

National Family Caregivers Month What's YOUR story? http://wp.me/p2UZoK-xp via @blestbutstrestNovember is National Family Caregiver Awareness Month. I’m sure most people are not aware of this little fact; I wasn’t.

Through the years I’ve known some amazing people who cared for catastrophically ill people. A mother who cared for her very young son (my friend) who had a brain tumor, until it took him away from her. A neighbor who cared for his wife long after a severe stroke removed all resemblance to the woman he married. My mother who cared for her mother past the age of 100 and held her for her final breath. A friend who patiently and persistently taught her son to crawl and walk again after a traumatic brain injury.

It’s what you do, right? If a family member needs you, well then, you care for them.

You wouldn’t trade it, you wouldn’t hand it to someone else and you learn to cherish the moments you have with the patient. But caregiving takes a toll. It changes who you are; sometimes physically and sometimes mentally and oftentimes both!

But you do it anyway. Because it’s family. Because you love. Because it’s your turn. (tweet this)

One of the biggest struggles many caregivers face is feeling all alone. Alone in the new way of balancing life, dealing with changes in relationships, learning to function on less sleep and crazy schedules and dealing with all the insurance and paperwork issues.

Family caregivers – you are not alone. You are not crazy, you’re not unappreciated and people would love to hear your story and share your journey!

This month, on our blog, we’re inviting family caregivers to share their journeys. Because they care, love and well, it’s their turn!

Come share your story. Come read amazing stories of true every day heroes.

 

Royal Tea or Royalty?

Which is better, having a royal tea, or knowing you're royalty? http://wp.me/p2UZoK-y4 via @blestbutstrestI stood at the castle school door in my evening gown and tiara waiting for the junior high and high school girls to arrive for an evening of tea and tiaras. A gaggle of pajama-clad (it was wear-your-pajamas-day at school day) elementary girls caught sight of me and started oohing and awing over my medieval gown and my pipe cleaner tiara.

“Where are you going?” I asked. “Aren’t you coming to the tea party?” Continue reading

Caring for a Spouse With Parkinson’s Disease and Stroke

MCC5

 

 

Meet: Paula
Caregiver Connection: Paula wrote a beautiful series of letters to Richard, her husband of over 40 years, for the #write31days challenge.
Blog: http://smidgensbitsandsnippets.blogspot.com
Who she cared for: Her husband Richard, who was diagnosed with Parkinson’s disease in the 1990s and had a stroke in 2011.
Favorite Bible verse: Psalms 23—This passage sustained the family throughout their caregiving journey

I am no longer a caregiver of a sick husband. Our journey has ended.

Being a caregiver tests every area of your life. It tests your patience. You are exhausted. It tests your belief in God. It is a journey. Continue reading

Caring for a Parent with a Mental Illness

MCC5

 

 

 

Meet: Tara
Caregiver Connection: Tara wrote for 31 days about living as the daughter of a mother with a mental illness.
Blog: Praying on the Prairie
Who she cares for: Her mother, who suffers from a mental illness.
Favorite Bible verse: “I can do all this through him who gives me strength.” Philippians 4:13 (NIV)

 

I am the oldest daughter of a woman who daily lives and struggles with a mental illness. My mom had a nervous breakdown shortly after my younger sister was born. Growing up, we didn’t know anything different. Mental illness was and continues to be a part of our story. Continue reading

Inspire Me Monday(s)

#inspirememondays

Angie Ryg

 

Sometimes, an oversight can lead to a serendipitous moment. For example, I started a link up for the inspirational participants of the #write31day challenge the first Monday of October. Throughout the month I met a lot of great bloggers through the link ups, but I discovered that reading and pinning and tweeting about each post in the link up caused a big strain on my Mondays (which already have enough going on between teaching full time, extra duty and doing evening reading club for my students who’ve fallen behind on their reading goals).

And then I discovered that an online blogger acquaintance already HAD a link up on Mondays for inspirational bloggers…and the names only had one letter difference. Thus the serendipity. Her link up was on hiatus while she was out of the country. She graciously pointed out that our link ups had similar names and purposes and suggested that maybe we could join forces. Brilliant idea! I’ll join her link up as one of four hostesses and then everyone wins. Four hostesses who will advertise and promote the link up. Four hostesses who will visit all of the links and do our best to get the word out about the inspiration ya’ll bring to the table each week.

So, I hope you continue to link up, build community and find Inspiration for your Monday! I’ll be retiring the “Inspire Me Mondays” graphic–so make sure you use the new one!

Here are the lovely co-hostesses of Inspire Me Monday: Angie Ryg, Cindy Krall, and Denise J. Hughes
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 (just ONE, please).

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 :).

I found inspiration for my Monday at #inspirememonday. Join us! (tweet this)

So, go ahead! Take the plunge and share your most inspiring post with us!


Celebrate National Family Caregivers Month With Us

National Family Caregivers Month What's YOUR story? http://wp.me/p2UZoK-xp via @blestbutstrestUnsung heroes live and work quietly beside you. You might know them from church, the grocery store, the library, the coffee shop or work. They might disappear for stretches of time, and reappear–a more tired, worn-out version of themselves. We know them as classmates, colleagues, acquaintances, bowling buddies and friends, but someone in their family knows them as ‘caregiver.’

Continue reading

Leave

Peace.  God offers you peace for your #caregiver journey. http://wp.me/p2UZoK-x6 via @blestbutstrest

About three years after Pedro’s stem cell transplant I finally had the courage to search online and for the survival rates for non-Hodgkin’s Lymphoma with central nervous system (CNS) involvement. What I found shocked me. Continue reading

Go Away

#Caregiver, take time for yourself so you have something to give. http://wp.me/p2UZoK-x0 via @blestbutstrest

Only one person ever told me to take some time for myself during my caregiving journey. And when I took his advice and spent the night in a hotel while a family friend spent the night in the hospital room with Pedro, I paid the price the next day in listening to disgruntled ‘well-wishers’ who felt I should have called them or should never have left Pedro’s side nor ‘wasted’ money on a hotel room. Continue reading

Sticky Fingers

Cancer's sticky fingers reached into our future and caused unforeseen problems. http://wp.me/p2UZoK-wU via @blestbutstrest“Are you by yourself?” My sister asked me when I answered the phone. I could scarcely hear her over the whine of saws and the pounding of nails as we rushed to finish the house we had started on our lot.

I looked around and gestured (yes, I gesture when I talk on the phone), “Not exactly. What’s up?”

“Could you go somewhere private?”

“Yeah.” I hate conversations that start like this. My stomach chokes me with a sense of dread. My feet feel heavy and my heart pounds. I can’t help but get that, oh-no-I’ve-been-called-into-the-principal’s-office feeling. I went out the unfinished front door, crossed the street and sat on the trailer. Continue reading

Burdened

If you give God your burdens, you need to be willing to take the yoke. http://wp.me/p2UZoK-wN #caregiver via@blestbutstrest

The pile of hospital bills proclaimed Pedro’s million-dollar-man status (I think I added them up once, and the grand total equaled about 1.5 million dollars). God blessed us through this entire time with steady employment for me, and an outstanding employer provided insurance plan. But the bills still created a burden.

Continue reading

God’s On Your Map, Guiding Your Journey

Wherever you are on your journey, God's on your map. http://wp.me/p2UZoK-wG via @caregivermom“I want to shout, laugh, dance and sing!
Andrew is in REMISSION!”

I wrote those words in my journal at the end of the first month of chemotherapy for my four-year-old. The hospital staff carefully explained that it was a chemo-induced remission and didn’t mean that his bone marrow was now operating normally or that we were “out of the woods”. But it meant that we could proceed with the three and a half year treatment protocol as planned and not detour to shock his system yet again until we achieved remission. His body had gone into remission as hoped.

Exciting! Continue reading

First (and the Inspire Me Mondays Link Up)

#inspirememondaysAbout a year after Pedro returned from the hospital and his successful stem cell transplant, I woke up one morning and decided I’d had enough. Enough moping around the house whining about my weight. Pedro had regained his pre-cancer weight—but I hadn’t lost mine.

I’d walked 10,000 steps a day for a year, and although I felt healthier, I still hadn’t lost a magical ten pounds. I’d lost a measly one pound. I keep of my school picture from that year somewhere (I hide it from myself and only come across it occasionally) because it’s a reminder of who I had become—an unhappy, overweight, grumpy woman who had received so many blessings that she had no reason to look like she’d been sucking on lemons. Continue reading

Regrets

If you hope in the Lord, you'll never regret it. Despite the stress of #caregiving http://wp.me/p2UZoK-wt via @blestbutstrestI thought my caregiver journey ended when Pedro came home from the hospital. But it didn’t. Not really. Yes, I had a new focus for my caregiving instincts, and life looked promising and full of hope.

While I acknowledged the incredible blessings in my life, I also continued to experience stress. Money caused the greatest stress—we had wonderful insurance, but insurance doesn’t cover incidental expenses such as travel to and from the hospital (the closest hospital that could adequately treat Pedro’s cancer was almost a thousand miles away), hotel rooms and food. Continue reading

Rest

God's answer to prayer is often creative. http://wp.me/p2UZoK-wn via @blestbutstrestSome days, I just wished that Pedro could have stayed in the hospital for a few more months. And this made me feel terribly guilty. I wanted him home, where I could attend to his every need and ensure that he gained weight and made progress—and most of all where I could see that he had, indeed, survived another day.

But oh, my days just seemed to run together in an anxious blur. And no matter how much I hurried and multi-tasked and tried to accomplish things, I felt like the proverbial hamster on the wheel—getting nowhere the faster I went. Continue reading

I Dare You!

A friend who sticks closer than a brother http://wp.me/p2UZoK-wc via @caregivermomMy brother could yank my chain better than just about anyone. He used to follow me around our house saying, “Come on, hit me, I dare you!” I shook my head and walked away.

He followed hot on my heels, taunting me, “Come on, hit me. Why don’t you just hit me?” He kept it up until finally out of sheer frustration I would stupidly punch him in the arm. He was older, stronger and bigger.

He punched me back, laughing that I took the dare, yet again. He couldn’t hit me first (his rules of chivalry I guess, I really have no idea). I had to throw the first punch and then it was open season.

Later he got better at daring me, “Come on up the rope ladder!” he coaxed.

“I’m scared.” I wanted help. Continue reading

Dare

I am not the me I used to be.  Now I dare to share. http://wp.me/s2UZoK-dare via @blestbutstrestThe funny thing about growing up in a conservative Christian community is that I never learned to share my faith—after all everyone I knew already believed the same things I did. I went to church with the same kids I went to school with. We had the same Bible classes from Kindergarten through 12th grade.

If someone asked me what I believed, I always happily shared, but I’ve never been the strike-up-conversations-with-strangers-about-Jesus kind of gal. Frankly, I suffered from fear. Fear of people not understanding. Fear of looking foolish. Fear of saying the wrong thing or offending someone.

It took almost losing my husband to give me confidence to share Jesus with strangers. Continue reading

Redeemed

God will lead those he redeems http://wp.me/p2UZoK-w1 via @blestbutstrestOne of the biggest challenges came out of left field a month after Pedro’s successful stem cell transplant. My goal in telling this part of our journey is not to point fingers of blame or launch accusations—I simply want other caregivers (and potential caregivers—so that’s just about everybody) to know that wise people make provisions BEFORE disaster strikes and that harboring hate isn’t part of God’s plan.

We weren’t wise people. Continue reading

Downcast

Caregiver, are you feeling downcast? There's hope for you. http://wp.me/p2UZoK-vS via @blestbutstrestIn the interest of full disclosure, I wouldn’t want anyone to thinks that caregiving contains miracle after miracle and daily evidence of God’s intervention (although those things did happen time and time again).

Nor would I want anyone to think that caregivers live in a sheltered super-power-type world where quotidian concerns fall away while a halo slips into place.

Not at all. Continue reading

Wait

Waiting with hope.  It's not easy. http://wp.me/p2UZoK-vN via @blestbutstrest #caregiver
After Pedro’s stem cell transplant, we settled in to wait. Wait for the stem cells to race to repair all that the chemo had killed. Wait for the doctors to discharge Pedro from the hospital. Wait for the release to return home to Montana.

Unfortunately, I had to wait in Bozeman while Pedro waited at his brother’s house, a 90-minute drive from the hospital. The delay frustrated me. I wanted a family reunion and a return to normalcy.

A couple of times a week we would try to talk via the Internet (remember that Skype hadn’t been invented yet, and computers didn’t come with cameras for video conferencing).

Pedro would chat with the girls and I would writhe in frustration at the poor graphics, the frozen images, and the inability to capture the subtle nuances of how he REALLY felt (part of this had nothing to do with technology and everything to do with the slow restoration of the use of the muscles in his face).

Had he gained any weight? Did he have any aches or pains that couldn’t be explained away by everyday occurrences? Had he sniffled? Did he get enough rest? Did his eye close all the way yet? (for months he had to sleep with a plastic guard taped over his eye because his eyelid wouldn’t close fully and caused his eye to dry out).

And the underlying question that picked and poked and nibbled at me all day long—was he still in remission? But, oh, I hoped. I hoped so hard it hurt. I spoke with confidence about the miracle God had performed in our lives—after all, Pedro had circled the drain on two occasions, and even the doctors and nurses agreed that he had experienced a miraculous recovery.

I hoped this reprieve, this miracle, would ‘stick’. That God really did intend to heal Pedro completely, even though I secretly doubted that we ‘deserved’ it. And maybe that was the crux of my worries. The problem that I quailed to ponder. Why? Why a miracle in Pedro’s life while other worthy people lost their battle with cancer?

Perhaps I suffered a bit from survivor’s guilt by proxy (after all, I had certainly suffered from chemo-brain by proxy). And so I waited with hope. I tried to draw near to God and not worry about his plan.

Hope acted as the thread that tethered my scattered thoughts and fears and kept me sane during those days of waiting. I knew that if the transplant failed, God still held me in his hands. We would be ok. I have a hope that burns within my heart of a new heaven and a new earth when God will vanquish all sickness and death. Yes, I had hope for the now a hope for the future.

Have you learned to wait for God? To wait with hope. Hope now and hope for the future. He’s calling you to wait with hope(tweet this)

Find more Comfort for Caregivers here.

Hope (and the Inspire Me Mondays Link Up)

#Hope smells like rotting grapefruit. #stemcelltransplant http://wp.me/s2UZoK-hope via @blestbutstrest #cancerHope smells like rotting grapefruits.

I’d smelled it before, as Pedro and I shuffled around Elven Long on our daily exercise laps.

The first time I smelled it, I joked with him, “It stinks just like the gymnasium did when you guys sold fruit last year!”

He looked at me quizzically, with his one eyebrow raised and the other one frozen in place. Continue reading

Lavish

The most lavish gifts have nothing to do with presents-but everything to do with presence. http://wp.me/p2UZoK-vh via @blestbutstrestWe celebrated our most lavish Christmas three days early, and I can’t even remember where we were on Christmas Day.

I don’t remember what we gave as presents. But presents didn’t make our Christmas lavish. Presence did. Pedro spent ten glorious days at home with our girls—and the present of normality meant the world to all of us.

Sure, he’d looked healthier in his life, and when he smiled only half his face sort of knew what was happening. That didn’t mater. Sure, we had hospital bills waiting for payment and our credit cards had almost reached their limits (receiving treatment in a far-away city where we had to eat out and stay in hotels constituted our biggest health care expense). Those things didn’t matter either.

Our little unit of four had ten glorious days to spend in each other’s company. To reconnect and remember. To decorate a Christmas tree with the familiar ornaments and lights (which Pedro proudly put up—in keeping with a 14-year tradition). To bask in the beauty of Christmas carols, Christmas songs, the miracle of Christ’s birth. And the simple miracle of life.

From August to December, the girls had only seen Pedro three times—and two of those trips had been “You’d-better-visit-quick-it-might-be-the-last-visit-kind-of trips). We luxuriated in each other’s presence—not knowing how long it would be until we would be reunited again.

The joy of the season of birth invaded our season of grief at almost losing Pedro. We gathered around our electric fireplace in the evenings and shut out the world by turning off all but the lights on the tree and reveled in our presents. Not the ones under the tree—but the ones around it. Pedro. Laura. Sarah. Me.

It was our most lavish Christmas ever because sometimes, the most lavish gifts have nothing to do with presents–but everything to do with presence. (tweet this)

What memory of lavish comfort do you hold dear?

Find more of the story at 31 Days of Comfort for Caregivers.

I’m linking up with my friend Barbie Swihart for the Weekend Brew over at My Freshly Brewed Life, and Sandra at Still Saturday.

Long

Day 17 Long

Remission. The word conjured up hope, impatience and longing. I hoped that the remission would stick (unlike last time). I wanted the procedure to start yesterday, thank you very much. And I longed to have Pedro home again where he could recover surrounded by everyone who loved him.

The doctors uttered the sweetest word after a series of setbacks that left Pedro weak, hardly able to shuffle and with a partially paralyzed face. Remission meant the next phase of treatment could commence—stem cell harvesting.

The procedure involved another minor surgery—this time to implant a temporary port with four lines in Pedro’s neck to make harvesting easier. As soon as Pedro’s white blood cell count reached normal, he could have the surgery and then start a daily round of Nupogen shots to his stomach to encourage his bones to produce stem cells.

After three or four days of shots he would go to the hospital where they would hook the ports in his neck to a machine that would take blood out of his body, run it through a centrifuge to collect the stem cells, and return the blood via a different port.

Hospital policy based on insurance company norms dictated that stem cell harvesting could take place on an outpatient basis.

Which is fine if you live close to the hospital and have strength for the daily commute. Pedro had neither. And so we started the next crazy phase of our nomad life (unfortunately, they don’t have a Ronald McDonald House for adults). Continue reading

Troubled

Day 16After my spelling lesson from God, I arrived at the hospital to make a difficult decision with Pedro—one that it turns out we didn’t actually have to make. But a worse trouble awaited us.

After another round of chemo, Pedro contracted a fungal yeast infection in his blood. With no white blood cells to combat the infection, his life once again hung in the balance.

I coped. Or I thought I did. Mostly I used the telephone line in the room for dial-up Internet. If someone needed to get ahold of me, they could call my cell phone. I opened an eBay account. I started bidding on Longaberger baskets. Continue reading

Mourn

Mourn.  Sometimes, we have to mourn in order to receive comfort. http://wp.me/p2UZoK-uIMy cell phone rang in the middle of a team parent’s meeting at Laura’s gymnastics class. Pedro’s voice sounded worse, but I wasn’t sure if it was because of his facial paralysis or because he really was worse.

“I’m back in the hospital.”

I breathed deeply and gripped the phone. “Why?” I asked as I jumped up and hurried to the lobby. I knew he’d been feeling dizzy lately, and his back was bothering him.

“Doctor says we haven’t killed it. Dizziness from the cancer.”

“What are our choices?”

“More chemo.” Pedro’s voice sounded so discouraged. “Might not work.”

“Or?” Continue reading

Dance

Mourning and dancing and tons of comfort http://wp.me/p2UZoK-tWThe blue sky simmered overhead and a gentle breeze twisted the golden leaves in a graceful dance. Sarah and I revved our motorcycles and headed carefully up dirt road towards Bear Creek.

It was a first. The first time I’d taken the motorcycles out without Pedro. The first time Sarah had ridden on a road. The first time I’d had a ‘date’ with her since Pedro’s hospitalization back in July. Continue reading

Quick (and the Inspire Me Mondays Link Up)

#inspirememondays

Welcome to Inspire Me Mondays!

Here’s my contribution–I’m on Day 13 of the #write31days challenge issued by The Nester.

“But Jesus was quick to comfort them. “Courage, it’s me. Don’t be afraid.” (Matthew 14:27 NIV)

Tubes sprouted from Pedro like a crazy hamster maze. A team of nurses moved quietly around the room, taking vitals and preparing him for the doctor’s visit.

Pedro had ended up in ICU the day before I’d returned to San Francisco. He had been responding to the chemo, but the doctors decided he would need radiation as well. Before they could complete the process, Pedro lost his ability to swallow.

The doctors worried that he would aspirate or get pneumonia and so they intubated him and whisked him off to ICU where they induced a coma-like state. Once a day they would bring him out of the coma to check his ability to swallow.

“How long will he be in ICU?” I asked the attending physician on Pedro’s second day in ICU

“A week, maybe two.” he answered. “You have children, don’t you?”

“Yes. Why?”

“You might want to have them come down for a visit,” the doctor looked at Pedro’s chart and avoided eye contact. Continue reading

Despair

Day 10Hymn and Him

Take My hand, child
It feels so dark I cannot see
Hold out your heavenly hankie, Father
Wipe away my tears

If that’s not in your plan because I
Need to shed them, then
Comfort all my
Fears.

I cling to simple facts
Your Son died for me. He is risen and
Will come again
(Must my comfort wait ‘til then?)
Oh, Lord, be Thou my vision

Let me make it through the night
Can you fill this gaping hole
Tubes and beeps and shallow
Breaths
Be still my soul

Sobs shudder to a stop. Vitals
Sink like the Titanic. You’ll
Shelter me in the midst of the storm,
Lord. Rescue me from panic.

I wrote this poem during Pedro’s stay in ICU, several weeks after arriving in San Francisco.   I knew God had his hand in everything that happened, but I still had whimpers of doubt and despair despite my faith.

And that’s ok.  Jesus himself felt moments of despair (the Garden of Gethsemane).  Throughout our caregiving journeys, we have the assurance that Jesus suffered and knows our despair.  He will help us through.

As Paul says, “We are hard pressed on every side, but not crushed; perplexed, but not in despair.” (2 Corinthians 4:8, NIV)

God IS near.  He knows your every sigh of despair.  Hold on.  His hand reaches out to you. (tweet this)

Have you ever felt a moment of utter despair in your caregiving journey?  Share with us.

 

Faint

Jeremiah 8:18 http://wp.me/p2UZoK-tPThe doors of the hospital whooshed open and I nodded at Pedro’s intern who headed out as I headed in. She smiled and stopped to chat. “That was quite the experience last night, wasn’t it?”

I nodded numbly. Pedro had started convulsing just hours after receiving his first chemotherapy treatment at the new hospital, and it seemed as if the entire staff on 11 Long had rushed into his room.

“The attending physician thinks he had the seizure because of the lymphoma cells started dying off so quickly.” She grinned. “That means the chemo worked!”

Again, I nodded numbly, and offered a feeble, “I hope that never happens again!”

The intern nodded her head and bounced out the door into the fresh air while I inhaled deeply and wished I hadn’t. Hospitals smelled of fear. I hadn’t slept much that night—they had moved Pedro to an acute care unit, and had allowed me to spend the night in his room.

I had spent the entire night franticly recording everything Pedro said in an attempt to unlock clues to his condition. The seizures continued throughout the night, and he babbled senselessly between dropping off to sleep and waking up with a new seizure.

The lack of sleep and stress of the new city, new hospital, new doctors and no place to rest pressed down on me. I felt too tired to even cry. As I turned the corner to head to the elevator, I saw a small plaque on the wall that indicated that the hospital had a chapel.

I followed the signs to a small empty room with dim lights. I spotted a chair towards the back of the room and fidgeted myself into a comfortable position with my feet tucked up under me and my head resting on my arms which were perched on the back of the chair.

Waves of exhaustion rolled over me, chased by sharks of worry. I didn’t know where I’d stay that night. I didn’t know if Pedro had lost his mind. I hadn’t spoken with the girls since I left. I didn’t know whether to sleep or to cry. I mumbled half-formed prayers.

A thought popped into my head in the middle of my distress. “You’re never to big to crawl into your Father’s lap.”

I relaxed into the chair even further. It might not be my Father’s lap, but it was in his little house. I rested. When I stood up, I no longer felt as desperate and oppressed as I had before.

Dear Caregiver, God offers his lap to you as well. Crawl into it. Rest your weary head and still your racing mind. You have a Comforter. He longs to rock you gently and pat your back tenderly as you spill out your sorrows in His loving embrace. (click to tweet)

Have you ever felt faint and unable to carry on?

When Strangers Care Enough to Give

Michelle had been on duty the night we first arrived at Doernbecher Children’s Hospital with our extremely leukemic four-year-old. Her kindness, patience and caring over the first few days of our new life was comforting and reassuring in those stressful days of learning about our new life.

One day, after a few weeks of undergoing chemotherapy, Andrew’s treatment protocol called for platelets—around 11 o’clock they had told us. We waited, and waited, and waited some more.

Michelle informed us that although Andrew had been scheduled to receive them, sometimes scheduling didn’t do any good, as there were no platelets available. Michelle casually mentioned, “Yeah, that happens way too often. That’s why I’m going after work tonight to donate.”

“How do you donate platelets?” I naively asked, “Don’t they just take them out of the blood?”

“No,” Michelle launched into the technical issues regarding the harvesting of platelets, which involves a generous time commitment for donors.

“And you donate?” I asked.

“Yes, every few weeks,” she responded, “platelets are always in demand here on our ward.”

Working long shifts with childhood cancer victims. Leaving work to sit in a chair and donate platelets. Caring beyond the job description.

I think there are no words strong enough to thank the caregivers out there who help make lives better, let alone save them. (tweet this)

Care

http://wp.me/s2UZoK-careI glanced anxiously at the sky as the thunderheads built up and menaced the airspace surrounding the airport.  Pedro HAD to make it on the air ambulance flight.  If he didn’t, I feared the hospital bed awaiting him at the University of California Medical Center in San Francisco (UCSF) would go to another patient.

It had taken a miracle to get him accepted to their hematology and oncology ward, and I didn’t want to let it slip through our fingers.

Even more, I feared that if we waited just one more day we would never make it.  He looked like a skeleton or an extra from Schindler’s List. The muscles in his face no longer worked, so in order to eat he had to use his hands to manipulate his cheeks and push the food between his cheeks.

Most of what he ate didn’t stay down long enough to provide nutrition.  No wonder he weighed 130 lbs.  It seemed as if he threw up within thirty minutes of eating.  Every. Single. Time.  I worried that some other yet-to-be identified problem lurked in his body.

I’d said my goodbyes to the girls the night before, and I only need to purchase a few toiletries and a pair of shoes before heading to San Francisco.  The hospital had arranged for our flight, but they’d had to postpone it a few hours once already due to severe weather.

My list of anxieties grew.  We’d be leaving our two young daughters at home with my parents for who knew how long.  Our daughters needed us during this scary time–being a thousand miles away from them scared me and worried me and squeezed my mommy heart.

Where would I stay once I arrived at UCSF?  How much was this going to cost us?  Would they have the cure for Pedro’s cancer?  I felt the tension grabbing my shoulder blades and hunching them together over the steering wheel.  I glanced down at my speedometer and jumped my foot off the accelerator.  I didn’t need a ticket to add to my worries.

Hail started to pound as I left the mall parking lot.  Had I remembered to leave a spare set of keys with my parents so they could pick my car up from the hospital parking lot? I struggled to find a parking place and remember where I’d parked so I could tell my folks.

When I stumbled into Pedro hospital room, a cheerful nurse exclaimed, “You’re just in time!  We’re preparing him for transport and your plane leaves in a hour.”

The stress threatened to choke me.  We were really on our way to the big city.  I launched a prayer heavenward.  I felt like I’d fall apart if we left and I’d fall apart if we didn’t.  I silently dished out my list of cares and worries in short little bursts of incoherent prayer as I calmly smiled at Pedro and helped him finish his supper.  Now if only he could keep it down. He HAD to stop losing weight.

Within an hour we had arrived at the airport and met the captain and the nurse who would administer morphine during the flight.  The rain had stopped and we made it to the plane without incident.

I realized that I’d started breathing again.  God did it!  He arranged everything in his perfect time  As the plane lifted into the air, Pedro said, “Its the Zofran!”

“What?” The nurse and I looked at him quizzically.

“That’s the medicine that keeps you from throwing up, isn’t it?” I asked him.  The nurse nodded.

“It makes me barf.” Pedro insisted.  “Every time I take it, I barf 30 minutes later.”

“I’ll add that to your chart,” the nurse said with a smile.  “I never would have thought of that.” She shrugged and scribbled.

I smiled and took another deep breath as I looked out the window.  The dying sun split the clouds with golden light, and the sliver of a rainbow peeked out from behind the clouds.  I’d cast my anxieties on my Heavenly Father, and he answered with a mystery solved and a rainbow to boot. (tweet this)

How have you  cast your anxieties on God?  

Find more caregiver comfort here.

 

Miserable Comfort

Day 9bRight before my caregiving journey, I found out that a dear lady and her husband (parents of Pedro’s students) were in the midst of their own cancer journey. He had prostrate cancer—and his health and healing became a matter of daily prayer for me—even during my darkest hours. Even though I didn’t know the family well, I felt solidarity in knowing that someone else traveled at the same time I did.

Of course, I didn’t know how to do anything BUT pray for my fellow travelers—I felt uncomfortable calling them to check up on them (plus, I hate talking on the phone) because I didn’t know them THAT well. And her husband’s diagnosis wasn’t the kind of show-up-with-a-casserole-catastrophic kind. But prayer, I could do that! Continue reading

Abound

http://wp.me/p2UZoK-tkDear Caregiver,

I know how frightening and fragmented your life feels. Nothing remains the same as BC (before caregiving). Sure, you try to put on a strong front with those who ask how you’re doing—after all, the focus of prayers and petitions should be on the one you care for.

You may hesitate to ask people for prayers or even assistance because you think that God has given you this burden to bear, and you don’t want to trouble anyone else. Continue reading

Afflicted


http://wp.me/p2UZoK-t0After my experience with God’s hand on my shoulder, I returned to Pedro’s hospital room, comforted and ready to face whatever came next.

A few days later, the doctor came in to announce that the chemotherapy regimen advised by Pedro’s California oncologist, Dr. Mirda, would have to be put off for two days while the hospital waited for additional medicine (there wasn’t enough methotrexate in the state to give Pedro the prescribed amount) to arrive, we realized that as much as we loved Bozeman Deaconess Hospital, maybe Pedro needed something more. Continue reading

Inspire Me Monday


#inspirememondays

Welcome to #inspirememonday! Who doesn’t need a Monday morning pick-me-up? At Inspire Me Monday, we hope to build a community where both bloggers and readers can come for a little inspiration to start the work week.

As with all link ups, we ask that you follow a few simple guidelines to help build the community.  It’s as easy as 1-2-3!

1.  Link up your most inspirational post from the previous week (just ONE, please).

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

3.  Get the word out THREE ways!  Tweet about the link up, tweet about a post that touched you, share on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it!

I found inspiration for my Monday at #inspirememondays.  Join us! (tweet this)

So, go ahead!  Take the plunge and share your most inspiring post with us!

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Unfailing

Day6
Never Fails. Never Quits. Always works. Always there. Never Changes. Never wavers. That’s the kind of love you can rely on, dear Caregiver, as you journey through your season of caregiving.

But sometimes, it seems as if God is distant and not interested in our journey. We feel overwhelmed, stressed out, and, frankly, not very loved by God.

Even though he promises that his unfailing love will always be our comfort, sometimes, we fall into the trap of woebegone wondering if God REALLY does love us (after all, we’re on an unimaginable journey).

Don’t ever become so stuck in expecting to receive love in your preferred ‘love language’ that you miss the other ways God shows his love to you. (tweet this) Continue reading

Promise


Deer in a field with mountains in background
Dear Caregiver;

I know your confusion and despair. I’ve sat with Deep Sadness and he makes an uncomfortable companion—especially when he invites his buddy Hopeless to join us.

Everyone seems to focus on the one you selflessly care for—conversation revolves around the latest tests, remedies, prescriptions, progress and setbacks. And that’s ok. After all, the one you care for needs those prayers and concern and comfort.

But, oh, some days it’s so hard to care for someone because no one recognizes YOUR suffering. You’ve set aside YOUR dreams to care for a loved one. You shortchange your work because you’re too drained to give one hundred percent to your employer AND to the one you care for. Added to those things, you suffer mentally and emotionally for the one you care for. Continue reading

Inadequate


Psalm 71:21
Inadequate. Incredibly inadequate and unable to perform the simplest tasks. That’s how I felt after the initial adrenalin rush that carried us through Pedro’s cancer diagnosis and first few rounds of treatment.

The last quarter of school had progressed in a haze of lack of sleep, worry and multitasking. I knew I hadn’t done my best, and now an irate parent had raked me over the coals and spread rumors and opinions about me all over the state of Montana (it’s a small state, with a lot of far-flung family members).

The move to Montana at the beginning of that school year, the new jobs and new school for our daughters had provided enough stress, thank you very much, without the added health crisis. The endless list of things to do sat on the counter—with nothing marked off.

I couldn’t even remember when Pedro would return from his chemo treatments in California, much less plan scintillating lessons for restless teenagers during their last week of school.

The angry parent had it right—I was a horrible teacher. I probably wasn’t much of a parent either—especially with Pedro gone for large chunks of time while he received treatment for his non-Hodgkin’s Lymphoma. Shoot, I couldn’t even remember what we needed when I stood in the grocery store aisles staring blankly at the food (what WAS I doing in the meat aisle? We’re vegetarians!). Continue reading

New Song


Day5In preparation for this series, I’ve spent time this last week thumbing through my journals from my season of caregiving. I thought I’d find minute details of what I did each day, and the state of Pedro’s health and outlines of what treatments he received at which hospital and at the hands of what doctor.

But I didn’t. I hoped the details would trigger memories with accurate locations and names and people who made a difference. I expected a sort of litany of who helped out and who comforted me during those dark days when Pedro’s life hung in the balance. Continue reading

Rod and Staff

Day2

Dear Caregiver,

Whether your journey leads through the Valley of the Shadow of Death, or just a deep, narrow valley of quotidian duties that never seem to change and never seem to end, God himself offers comfort.

When my season of caregiving began, I felt like a sheep—clueless and lacking direction. I hadn’t learned the language of cancer, and I had no idea what Pedro’s illness might require of me—I just knew that the way seemed dark and full of pitfalls, twists and turns.

I hate to admit it—since the Bible compares us to sheep all the time—but sheep are kind of dumb. In Montana, where temperatures can drop well below zero clear into March or April, shepherds shear the sheep right before lambing season so that the ewes will stay inside the warm barns rather than wander outside to have their babies.

You probably never considered that a rod and a staff could offer you any comfort. After all, those objects sound more like tools of discipline or weapons of war—and what comfort could they possible offer a burdened caregiver?

The rod and the staff in the hands of a shepherd provide comfort because the Shepherd uses them for the benefit of the sheep. (tweet this)

The rod, according to Phillip Keller in his book A Shepherd Looks at Psalm 23, is an extension of a shepherd’s right arm. Its heavy knot on the end serves as a cudgel that the shepherd can throw at predators or use to hold obstacles out of the path of the sheep.

The shepherd carves his staff to serve the unique needs of the sheep. He uses it to lift wayward sheep who have fallen, or to draw a lamb close to its mother. It wouldn’t work on a cow or a duck or a donkey—or even a whole flock of sheep at once. It’s made to give comfort and succor to one sheep at a time.

And so with the heavenly rod and staff, the One who promises to comfort us will do the same (if not more) as an earthly shepherd. He’ll protect us from predators—help is a heartbeat away. He draws our weary souls close to his heart with his staff and offers comfort and strength for our journey.

Comfort—that’s what the Shepherd offers you today. Walk through your day filled with the courage and strength that comes from knowing the Shepherd stands ready to use his rod and his staff to comfort you.

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Find the rest of the series here:

31 Days of Comfort for Caregivers

Day 1-He Is

Day 3-New Song

Day 4-Inadequate

He Is


Isa 51:12
I shoved my feet into my boots and grabbed a pair of mittens before I headed out the door towards the crusty snow that formed a dirty blanket in the field across from our house.

I turned back once and saw the warm lights of our home mocking me. Cancer?! In our house? Pedro and I had great jobs that we loved and two beautiful daughters who we loved even more. And now a monster had shoved it’s way into our tight-knit family of four.

Relatives had come to help out and comfort, and the words I wanted to say to one of them had impelled me out the door before I lost my tongue. Ms. Bossy had been blithely arranging my life without my consent, and my resentment had reached critical mass.

As I lurched through the snow (it’s not easy to walk in snow that has a three inch crust with two feet of powder underneath), I cried in frustration. Why had this happened to US? What had we done to deserve a cancer diagnosis? Continue reading

31 Days of Comfort for Caregivers

31Days headerbold
Because caregivers need a daily dose of comfort. (tweet this)

That’s what I craved during my caregiving season. It didn’t matter if I found myself in the midst of a medical emergency, surrounded by frantic hospital staff, or awakened in the quiet of the night from my restless slumber on a hard hospital cot, I needed comfort.

And after the crisis passed, I still craved comfort. Comfort as I made the adjustment to my new reality and comfort that that I would be able to handle the pressures of caregiving and parenting and working full time.

Sometimes, I turned to food for comfort (which didn’t work very well), even though I knew all along that only one place offered true comfort. In order to receive the comfort, I needed to spend time with the comforter.

During the 31 days of October 2014, I’m joining up with my friends at Kate Motaung’s, the host of Five-Minute Fridays, who have accepted the double challenge of blogging about a topic for the 31 days of October (a challenge started by The Nester and now hosted at Write 31 Days) AND trying to write each post in five minutes—more or less.

And so I invite you to return each day in October for a peak at the comfort God offers to YOU—a busy caregiver. Brew a cup of coffe or a cup of tea, grab your Bible and a comfy blanket (brisk mornings come along with October—even in the high desert) and join me. Or, if you’re really stressed and busy, lock yourself into the bathroom for five minutes and use your cell phone to read about the comfort God offers.

Each day in October, return to this page to follow the link to the post of the day. Or, you can subscribe to the RSS feed or to the blog. I’ll also be posting the links on twitter and pinterest using the hash tag #write31days and #caregivercomfort. The topics for Fridays will remain unknown until Kate supplies them on Thursday nights at the weekly #fmfparty on twitter.

If you’re not a caregiver, but know someone who is, please pass along the link and the encouragement!

October 1—He is
October 2—Rod and Staff
October 3—New Song
October 4—Inadequate
October 5—Promise
October 6—Unfailing
October 7—Afflicted
October 8—Abound
October 9—Miserable Comfort
October 10—Care
October 11—Despair
October 12—Faint
October 13—Quick
October 14—Dance
October 15—Mourn
October 16—Troubled
October 17—Long
October 18—Lavish
October 19—Spoke
October 20—Hope
October 21–Wait
October 22—Downcast
October 23—Redeemed
October 24—Dare
October 25–Rest
October 26—Regrets
October 27—First
October 28—Burdened
October 29—Sticky Fingers
October 30—Go Away
October 31—Leave

 

 

You are Worth the Effort

worth the effortDear Friend;

You are worth the effort. It’s not easy, struggling through each day and learning to squash the automatic thoughts that the evil one has planted in your subconscious. But you are worth the effort.

Answering endless questions posed by psychiatrists and counselors feels like an invasion of privacy (and possibly pointless.) But each person involved wants to help fit a piece of the puzzle into the masterpiece that is you. And you are worth the effort.

Sitting in group sessions or classes and listening to people who really ‘need help’ seems like an unnecessary chore—especially when from all outward appearances you look pretty normal (unlike the guy rocking back and forth in his chair with his hair askew and wild eyes). Take heart—join the community of flawed people (after all, we are ALL flawed)—and learn to share your burdens in a safe place. You are worth the effort.

Learn to remake the movies in your mind—the ones that currently star ‘Failure Girl’ and have titles like Looser, She Bombs Again, and Worthless Waif.  Remake the movies with the real YOU—the one who is infinitely precious and beautiful—and remember that her name is ‘God’s Girl.’ She stars in movies with titles like Saved Again, Walking With Jesus, and Precious Child. Mindfully edit the horror movies that predict failure and defeat. You are worth the effort. Continue reading

Butternut Coconut Soup (Vegan and Gluten-free)

Try this #Butternut #Coconut soup--#vegan and #glutenfree http://wp.me/p2UZoK-3k via @blestbutstrest

I’ve discovered that our family of four can’t eat a whole butternut squash as a side dish in one setting, so this is a creative way to serve the leftovers up the next night.

This is how I prepare the butternut squash the first night: I cut it in half, scoop out the seeds and rub olive oil over the inside of both halves. Then I place them cut side down on a baking sheet and bake them at 350˚ for about an hour and a half. Once it’s tender, I scoop the squash out of the skin and serve it with as a side dish.  The next day, I’ll use the leftovers in this easy soup.

You’ll need between 2-3 cups of butternut squash puree. Simply place the leftovers in the blender, add one cup of water, and blend on high until they’re smooth.

Next, heat 2 teaspoons of olive oil in a skillet and add:

1 shallot (or 1/4 an onion), cut into chunks
1 jalapeño, cut into chunks
1 clove garlic, cut into chunks
½ tsp. cumin seeds
Sauté until the shallots, jalapeño and garlic are tender

In a large blender jar, add

1 c. water
15 oz. Great Northern Beans (one can, drained)
½ c. cashews
The sautéed ingredients
Blend on high speed until creamy.

In a 4 quart sauce pan, add the butternut squash puree, the cream base and:
2 cups of water
1 can coconut milk
1 tsp. ginger
2 tsp. salt
½ tsp. turmeric
½ tsp. cinnamon
1/8 tsp. nutmeg

Cook on LOW heat for about 30 minutes—keep it covered and stir every five to ten minutes. It’s a very thick soup, and may erupt like Vesuvius! Add more water if you prefer to have a thinner soup.

Garnish with cilantro leaves.

Try this #Butternut #Coconut soup--#vegan and #glutenfree http://wp.me/p2UZoK-3k via @blestbutstrest

Read my Healthy (er) Choices Manifesto if you’d like to know why I cook the way I do.

How do YOU like to use leftover butternut squash?

©2013 Anita Strawn de Ojeda

Will YOU Notice?

Everyone is polite, respectful

Hinting of admiration and budding friendships

Introducing themselves with warm smiles

That almost reach their eyes

Words express joy

Welcoming to the inner circle

Of a lifetime of friendships

But conversations slide into emptiness

She shifts, uncomfortable in the unknown,

Bracing against the billowing laughter

Based on private jokes and knowledge in common with everyone but her

She’s all alone in the friendly crowd

Wondering who will notice

Would you?

Will you?

Will you notice? Care?

Someone new to your church

your school

your mom’s club

your family gathering

or your neighborhood

Notice

That’s all it takes