Unconditional Love – Trisomy 13

A Mother's Letter of Love to her Unborn Child

When the joy of pregnancy becomes mixed with a Trisomy 13 diagnosis for your unborn child, a mother’s love doesn’t quit.  It grows stronger each day that little one grows inside, even when she knows that his birth might also mean his end.  I was blessed to teach Hannah, her senior year in high school, and we’ve kept in touch over the years.  When I saw this letter, I knew it needed to be shared on a site dedicated to caregiving of all kinds.  May you be blessed by this mom’s beautiful love for her baby:

One Mommy’s letter of love to her unborn baby with Trisomy 13

Dear Jedediah,

I love you. I am so thankful you are mine.

The doctors say you have a severe chromosome abnormality called Trisomy 13. They say you aren’t going to live.

But you are living now.

And every moment with you is precious.

So kick me, punch me, roll, and turn. Remind me that you are alive right now. Remind me how lucky I am to be your mommy.

You are so precious. You are so loved.

Your name, Jedediah, means “Beloved of the Lord.” Every time I hear your name I will be reminded that God loves you even more than I ever could. It is comforting to think of how much God loves you.

There are so many people who love you too, Jedediah. Daddy and I love you. Your family and friends love you. You have many friends who are praying for you and hope to meet you someday. I hope that somehow, in some way, you can know that we love you.

I can’t wait to hold you in my arms, yet at the same time I dread that day approaching because I know what it will likely mean.

So take your time dear one. If you are comfortable in mommy’s tummy, stay for a while. And kick me, punch me, roll, and turn.

And let me love you.

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Read This Before You Sign Up to Race for a Cause

Is it worth it to run a marathon for a cause?

causeRun (or Bike, or Hike, or Walk) for a Cause

Back in January I decided that if I wanted to actually run a marathon in my fiftieth year, I would need accountability. For this reason, I joined the Leukemia and Lymphoma Society’s (LLS) Team in Training (TNT) program. The LLS marries endurance sports with charity using the concept from elementary school participants finding sponsors in order to raise money for a cause.

In the case of the LLS, the cause involves research for blood cancers. You can find out more information on their website about the strides in blood cancer treatment and how they use the monies.

Fourteen years ago, Pedro benefitted from that research and development when he had non-Hodgkin’s Lymphoma, which went into remission and then quickly relapsed in a worse form (the lymphoma cells entered his central nervous system—we joke about his cancer going to his head).

The LLS assists the TNT members by providing local volunteer coaches and support in fundraising. ‘Local’ is a relative term, though. I live in a very small community and my local coach and the rest of my team members lived in Phoenix—a three-hour drive from home.

The Nitty Gritty of What Happens Next

When participants register, they can make different commitments—the larger commitments include a shared hotel room (with another TNT participant). Since Pedro wanted to go with me, I decided to pay for my own hotel room.

I spent perhaps ten hours working on fundraising, and through the generosity of friends and family I raised my commitment amount ($1,200) before the deadline (typically a week before the event takes place). TNT made it easy by providing a fundraising page online and mailing out letters for me (they provided the stamped envelopes, I wrote the letter and addressed the envelopes).

Training for the marathon took about five months—when I started, the longest distance I had run in the previous six months was about five miles. I used the Nike Run Club app on my phone as my primary trainer, and did most of my running on a treadmill until the weather warmed up.A perk of running a marathon--the plethora of quirky signs along the route. http://wp.me/p2UZoK-1G7

I ran a half marathon in February as part of my training program (those long runs get a little boring). But by May, I felt the need for company during the long runs, so I drove down to Phoenix for two of the team trainings. I enjoyed meeting some of my other teammates and the coach—and the change of scenery made the run interesting.

When the really long training runs came along, I often questioned my sanity in choosing to run a marathon. After all, I don’t consider myself particularly athletic. I have enthusiasm about some activities, but I don’t have any athletic talent or coordination—I can’t walk upstairs and drink water at the same time.

When the training blues hit, I knew that I needed to power through because people had already donated money and I couldn’t back out.

TNT Race Weekend

When the weekend finally arrived, Pedro and I drove to San Diego (with a stop along the way for him to ride his favorite mountain bike trail in California).

After checking in to our hotel, I picked up my race packet and then we spent several hours visiting friends in the area. The LLS holds a gala the night before the race at the sponsoring hotel. Team Arizona sat together, and we enjoyed chatting about our training and race-day strategies during the meal. The event emcee introduced the top fundraisers for the race (one of them, a 94-year-old woman, had raised an incredible amount of money).

Several fundraisers and survivors shared their stories of why they raise money and run for the cause. Their inspirational stories dispelled any doubts I had about my sanity. Joining together with other people to raise money for a cause forms a community that allows each member to do more than they could do on their own.

The organizers invited the guests to show up at mile 8 for a free t-shirt and a chance to join the TNT cheering section. I thought it was a great way to include family members. They also provided cheer signs, cow bells and clappers.

Sunday morning the team met in the hotel lobby at an absurdly early hour (4:45), so that we could walk to the shuttle bus together and ride to the race start. The coaches warned us about the port-a-potty lines (get in line as soon as you get off the shuttle), and told us where to leave our race bags.

Racing for the Cause

In order to provide a safe and organized start, the San Diego Rock-n-Roll Marathon has staging areas for participants based on the participant’s expected finish time. DJs played music to keep everyone entertained during the wait, and a new wave of runners started about every two minutes.

It took me about 35 minutes from the official start of the race to actually cross the starting line. During that time, other TNT participants came by to say hello and encourage me—not that I knew any of them. But, since we all wore the same purple shirts with our local team names emblazoned on the back, we could easily spot TNT members.Should you run for a cause? http://wp.me/p2UZoK-1G7

Once we started running, TNT coaches could easily identify us as well, and at least three times along the course a coach joined me to chat and encourage me through a difficult stretch. As other TNT members passed me, they would shout an encouraging, “Go, Team!” Bystanders who knew about TNT would do the same.

When I finished the race, I checked in at the TNT booth to let them know I’d finished. Unfortunately, Pedro and I had to hurry back home. Otherwise, it would have been fun to hang out with my new friends.

Would I Do it again?

Yes! Ok, maybe I won’t go the full marathon distance again. But I could sign up for a TNT bike ride, half-marathon, or other endurance event—anyone want to do a triathlon? Just kidding (maybe). The combination of team support, accountability from donors, and camaraderie made my marathon experience worth the effort.

If I lived in a bigger city, I could have joined in some group fundraising projects as well. Team Arizona members hosted a luau and a silent auction, but I lived too far away to participate. The weekly coaching emails from the coach and the offers of fundraising assistance from the TNT office helped me a lot.

So, if you have thought about signing up to support a cause on your next (or first) endurance event, I would highly recommend that you give it a try.

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Autopilot – the mode of operation for long-term caregivers

And the God who gets us through

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

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

I’m on autopilot

Feet float

From place to place

Unaware of where they’re going

Lost from where they’ve been

 

Eyes drift

Across words on a page

Reading and rereading a passage

Unable to soak it in

 

Ears buzz

Around conversations flying by

Desperately trying to pick out information

Confused by threads of thought

 

Mouth stumbles

Over pieces of a conversation

Tripping over thoughts refusing to be expressed

Incapable of coherence

 

Hands flutter

From task to task

Forgetting how to accomplish anything outside of an emergency

Helpless to proceed

 

I’m on autopilot again Lord,

Lost,

drifting,

buzzing,

stumbling,

fluttering

Autopilot

The only way I can do anything at all

Is to have You

Be my pilot

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

Put God in the pilot seat!

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Shadowing in Alzheimer’s: Two Sides of a Coin

National Alzheimer's Disease Awareness Month

Alzheimer's
The Problem With Alzheimer’s

When a beloved family member receives an Alzheimer’s diagnosis, long-term care is a big issue in the United States. This is especially true when the recipients and their family members have to contend with a condition as devastating as Alzheimer’s disease. Although caregivers have unlimited access to resources, such as long-term care consumer guides and various studies, no one can truly be prepared for the toll that Alzheimer’s disease and other types of dementia can take.

Currently, more than five million Americans are living with Alzheimer’s. And while this number may be already considered too many, research shows that the number could rise to 16 million by 2050. It is the sixth leading cause of death with 1 out of 3 seniors reported to die from the disease. In fact, it kills more than breast cancer and prostate cancer combined.

Alzheimer’s disease gets worse over time, and it affects the family caregivers and the diagnosed alike. Relationships may change, and roles may be reversed. It can take a lot from both sides, and truthfully, it often does. After all, the symptoms and impacts vary that it is easy for anyone to be overwhelmed by the whole situation. One such part of Alzheimer’s is Shadowing.

Shadowing in Alzheimer’s is when the people with the disease constantly trail their caregivers. This is when they mimic their caregivers, go wherever the caregivers go, or become very anxious when their caregivers are not in sight.

From the Perspective of the Person with Alzheimer’s Disease

Often the root of shadowing is confusion and fear. Individuals with Alzheimer’s disease or other types of dementia are going through drastic changes. What used to be familiar to them becomes completely alien. And when they cannot make sense out of their surroundings, it can be quite terrifying. They may easily become fearful and anxious about their environment. And to feel safe and calm themselves, they tend to follow their primary caregivers around.

They become their caregiver’s perpetual shadow. Many relate this to the relationship of a small child and a parent. The child is completely dependent on the parent, and the latter’s presence enforces a sense of security.

Through the Eyes of the CaregiverCaring for someone with Alzheimer's can be discouraging and frustrating--especially when you need a break. Try these two simple solutions to help your loved one through transition times.

Caregiving can take its toll on an individual in various ways. It can affect a person physically, emotionally, financially, and mentally, which is why taking breaks are often a must. However, for caregivers to individuals with Alzheimer’s, taking time off may be difficult to achieve. When their care recipients are shadowing them constantly, it is easy to feel overwhelmed and frustrated. And when this happens, their feelings of guilt can multiply.

It is important to note that when these feelings arise, caregivers must remember that their feelings are valid. They can feel frustrated or overwhelmed by the whole scenario. They must acknowledge their limitations and take active measures to address the situation.

#Shadowing in Alzheimer's is a manifestation of fear and anxiety. #caregivers #alzheimers Click To TweetBear in mind that shadowing is a manifestation of fear and anxiety. The root of these two emotions must be the one that caregivers ought to address and not the behavior itself. Caregivers can encourage feelings of safety and security through activities that work best for the specific individual.

They could record their own voice conveying reassuring messages for playback to the patient during the caregiver’s absence. In addition, caregivers can identify therapeutic music that their loved one with Alzheimer’s enjoys listening to. No two cases are the same, so the caregivers must be creative in finding a way to ease the stress of their loved ones with Alzheimer’s disease.

Guest Bio

Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long-term care insurance, financial planning, elder care, and retirement. In line with the organization’s goal, Samantha’s work highlights the importance of having a good long-term care plan, which includes requesting a long-term care insurance quote to securing comprehensive coverage.

 

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Are You Willing to Let God be Sovereign in the Situation?

A Caregiver Looks at Psalm 91: Part II

sovereign

A Caregiver Looks at Psalm 91: Part II

In part one of this series we looked at the first four verses of Psalm 91—a well-loved Psalm that I have a problem with. Join me as I work through the next two verses and try to figure out what they mean for the caregiver.

We left off at verse four, with the understanding that if we stay close to God, he will shield us from the lies of the devil. During my caregiving journeys, I often found myself worn down, worn out, and unable to cope in private. I thought I needed to take on the care of my very ill husband and shoulder all the other daily burdens as well. I forgot that God is sovereign.

Coping in public seems like a given. Caregivers don’t want to draw attention to themselves and their needs because they seem petty (even if they aren’t) in light of the bigger needs of the one they care for.

#Caregivers don't want to draw attention to themselves and their needs because they seem petty… Click To Tweet

What Does Fear Really Mean?

5 You will not fear the terror of night,
nor the arrow that flies by day,

In verse five, God doesn’t promise that terrors won’t lurk. He promises that we won’t FEAR them. The dictionary tells us that ‘fear’ as a noun is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” As a verb, ‘fear’ is “to be afraid of: expect with alarm.”

In other words, when we trust in God and stay close to him, we don’t let the devil’s suggestions of the worst-case scenario take over our imaginations and cause us extra agony.

During my first caregiver journey, I often let worries about the future drag me down. In those quiet moments late at night, the lies of the evil one nibbled and scampered inside my head like rodents in the walls. I had to make a conscious effort to allow God’s light into my mind to chase away the mice of despair.

Gradually, I learned that I didn’t fear the terrors of night, nor the arrows of circumstance and progression of disease that assaulted me by day. This knowledge armed me for my second caregiver journey.

The devil loves to point out our shortcomings and failures through the behaviors and actions of… Click To Tweet

What’s With Pestilence and Plagues?

6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

My second caregiver journey provided the perfect opportunity for falling for the devil’s lines: “If only you would have been a better parent.” and “She’s acting like this because you failed.”Life is short. Pray hard. A caregiver looks at Psalm 91 http://wp.me/p2UZoK-1FY

After all, when one’s offspring implodes on a public forum (Facebook and YouTube), pretty much the entire known world knows. Our children’s actions highlight all that we did (or didn’t) do as parents. All too often we measure ourselves by our children’s actions—even if our children have reached adulthood.

I like to think that the ‘pestilence’ and ‘plague’ that the psalmist uses here have more to do with those lies of the evil one. It would have been easy (and natural) for me to roll up into a ball of dejected depression as I watched Sarah make a series of horrible choices.

I could have rejected God’s sovereignty because he didn’t provide protection for Sarah on my terms. He COULD have saved her from her bad choices and helped us figure out her diagnosis much earlier. But he didn’t.

I had a choice—either accept God as the sovereign in the situation and daily affirm his right to allow things that I didn’t like to happen, or reject God.

We have a choice: accept God as sovereign & affirm his right to allow things that we don't… Click To Tweet

Choosing God’s sovereignty kept me sane. Sure, I spent a lot of time in tears and on my knees. My relationship with God got stronger as I relied on him to help me avoid the pestilence and plague of the devil’s recriminations.

The devil keeps plugging away, trying to undermine our relationship with God. We have a choice—call out to God in the darkest night or in the light of day, or let the devil sink us with his lies.

Caregiver Applications

1. With God as our sovereign, we don’t have to fear the terrors.
2. We don’t need to work out the worst-case scenarios and stew about them.
3. The devil likes to jab at our weak spots and make us blame ourselves for other people’s actions. Just say, “No!”

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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A Caregiver Looks at Psalm 91

Part I

Psalm 91

A Caregiver Looks at Psalm 91

I confess. I have a problem with Psalm 91. Have you read it lately? For the last seven months, I’ve studied the Psalms.

Last week I came to Psalm 91 and it got my dander up. Why? Because as a caregiver, I KNOW that God doesn’t offer supernatural protection from disease and death to Christians. I’ve known many good Christians who have had catastrophic illnesses, and many good Christians who have died.

How then, do I reconcile the verses about ‘no harm overtaking me’ and ‘no disaster coming near me’ with the reality of the bad things that happen to the ones I love?

Psalm 91 makes it sounds as if genuine Christians will have nothing bad happen to them. In fact, the Pilgrims believed that disaster meant that a person lived outside of God’s grace. The ‘elect’ had successful lives; everyone else had problems.

I don’t claim theologian status—but I do claim a personal relationship with God and a desire to understand his word with the help of the Holy Spirit. So, I set out to figure out how a caregiver can live with Psalm 91.

For the next several days, I’ll share what I’ve learned from giving Psalm 91 a closer look.

Verses 1-2

1 Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.[a]
2 I will say of the LORD, “He is my refuge and my fortress,
my God, in whom I trust.”

First of all, we must dwell in God. The word dwell means ‘to remain for a time’ as well as ‘to keep attention directed.’ It can also mean abide, stay, remain, and tarry. If I spend time with God and trust him with the most intimate parts of my life, than I can say I dwell in him.

In that act of dwelling, I can find rest—something every caregiver needs! I must give up my desires to fix everything and make the path smooth for those I care for. I must discipline myself to consciously turn over all of my problems to God.

Verse two talks about God in war-terms: refuge and fortress.
Our motto needs to be, “I trust in God.” Period.

Verses 3-4Some people think Psalm 91 promises us a life on easy street. I disagree. http://wp.me/p2UZoK-1FW

3 Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.

The next two verses use a birdy simile—something I can relate to! In the olden days, fowlers had the responsibility for setting snares for wild birds for the cooking pots. They acted as specialized bird hunters. Likewise, the devil acts as a specialized hunter of human souls.

The word ‘pestilence’ means ‘disaster’ or ‘destructive and pernicious.’ The devil sets snares for us, and uses pernicious lies to lure us into his hopeless way of thinking.

God doesn’t promise us a life without disease, he promises protection from the pernicious lies of the evil one.

God doesn't promise a disease-free life; he promises protection from the lies of the evil one. Click To Tweet

The simile continues in verse four where the psalmist says that God will offer us shelter under his wings. A mother bird will shelter her young under her wings—which act as protection against the elements as well as other birds and animals of prey.

I believe one facet of that protection for caregivers includes what I call a ‘happy-face-state-of-grace.’ During Pedro’s illness, I often thought it odd that I didn’t break down on a regular basis.

Bad news and discouraging setbacks seemed to roll right off me—I had taken emotional shelter under the wings of a loving Savior. Just like feathers repel the rain, so God’s grace provided protection for my emotions during very trying times.

God’s faithfulness arranged flights that seemed impossible, kept airfare low, provided inexpensive hotels, and in times of great need, a way for our daughters to see Pedro for what we thought was the last time.

Caregiver Applications

1. God wants us to take up residence in the safest place possible—close to him. As caregivers, we do this by staying in daily connection with him.
2. The devil’s snares consist of pernicious lies—thing such as, “It’s my fault.” “If only I had ____.”
3. God’s ‘wings’ of grace protect us and allow us to function when we choose to hide close to him.
4. God will provide. His faithfulness will manifest itself in unexpected ways.

How has God provided for you in your caregiver journey? Share in the comments section! I’d love to celebrate God’s goodness with you.

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Happy Father’s Day – from God

Our Daddy when we need Him

Father’s Day – what a fantastic idea!  A time to call our dads or send a note or make them something special and let them know they’re loved.  On the other hand, Father’s Day  – what a horrible idea.  A time to miss our dads and renew a sense of loss in our lives.

My two fathers (my dad and my father-in-law) on my wedding day. I miss them both and am thankful for my heavenly Father.

This blog is a caregiving blog, and as such I’ve written before about my dads – my own dad and my dad-in-law.  Both men I admire greatly for their familial dedication, hard work ethics and commitment to God.  Today is our second Father’s Day without either man around to thank and that makes me sad.  My family just celebrated my niece’s wedding last weekend.  The whole family was able to be there – except for my dad and my nephew.  They are both awaiting Christ’s soon return and their resurrection from the grave.  We all felt the loss although we chose to speak of it only very little.

Father’s Day.  It used to be fun – now it’s an ouch that doesn’t quite heal, a loss that leaves an ache in one’s center.

For those out there who, like me, are reminded of losses on this Father’s Day, I want to remind you that you have a Father.  I mean a present Father.  One who loves unconditionally.  A Father who cares daily.  A Dad that will never leaves you and never forsake you.  In those moments of loneliness, when the relationship to your earthly father is messed up, or gone, God promises us that he is a “A father to the fatherless, a defender of widows, is God in his holy dwelling.” (Psalm 68:5)

God’s presence doesn’t remove the loss we feel about our earthly dads, but it certainly provides comfort and hope for things to come.

May God richly bless each of you this Father’s Day and may we each cling to our heavenly Father, until His soon return when we can all be whole and united.

If you're feeling more loss than joy on this Father's Day... #InspireMeMonday… Click To Tweet

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Expectations Can Make All the Difference

Choosing what we expect from life.

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

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

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

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

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

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

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

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

Still we were waiting.

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

            Let me pause for a moment

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

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

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

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

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

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

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

Expectations.  Hmmm.

What do I expect for myself?

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

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

What are your expectations today?

What are my expectations of God? How about my #expectations for myself? #inspirememonday… Click To Tweet

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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YOU Can Help Stop the Stigma

Mental Health Awareness Month Resource Page

stigmaMental Health Awareness Month-What’s the Big Deal?

May marks Mental Health Awareness Month in the United States. Many of you may wonder why a website dedicated to caregivers and caregiving would take the time to mention mental health isues. Meantal Health problems are the unseen cancer of our times.

According to the National Alliance on Mental Illness (NAMI), suicide is the second leading cause of death in people ages 10-24. Take a moment to let that statistic sink in.

The School of Social Work at Washington State University has this sobering statistic to share:

The great majority of people who experience a mental illness do not die by suicide.  However, of those who die from suicide, more than 90 percent have a diagnosable mental disorder.

Our daughter Sarah almost became one of those statistics. She had an undiagnosed mental illness that caused severe depression and suicidal ideation. We became her caregivers, even though she didn’t suffer from cancer.

The Stimga of Cancer (and Mental Illness)

Like cancer, mental illness knows no socioeconomic boundaries. It doesn’t skip age groups, ethnicities, or religions, either. Mental illness can occur in any person, at any time, for no apparent reason. Thus the need for a Mental Health Awareness Month.

A century ago, no one wanted to speak about cancer, either. In fact, doctors didn’t tell their patients that they HAD cancer for fear of demoralizing them. That stigma remained in place for centuries. Thank goodness the American Cancer Society got the conversation started in 1913 and published a list of warning signs.

Conversation leads to questions, which lead to research, which leads to ways to manage and cure. We can do the same thing with mental illness. We can not only stop the stigma, we can help change treatment and understanding.

Like #cancer, #mentalillness knows no socioeconomic boundaries. Inform yourself. #stopthestigma… Click To Tweet

The more we know, the more likely we will notice changes in behavior that could signal a deeper problem. If we know the signs, we will know when to get help. pray

Resources for Mental Health Awareness

NAMI has a great website that offers not only information about mental illnesses, but support group information for both those who suffer and their family members. They offer a free helpline 24/7. If you suspect that someone you love has a mental illness, CONTACT NAMI today! You could save a life (Text NAMI to 741741 to get help).

The School of Social Work at Washington State University hosts the Mental Health Reporting. The information helps reporters and writers (as well as patients and caregivers) talk about mental illness in a way that avoids perpetrating the stigma against those who suffer.

Do you know of another website that offers quality information? Email me at anita at blessedbutstressed dot com and I’ll add it to this page if the information fits.

Stories From the Trenches

Sometiems, just knowing that we are not alone is all it takes to help us get help for ourselves or seek help for a loved one. We hope that these stories will resonate with you and inspire you to stop the stigma:

31 Glimpses into an Unquiet Mind–Our family’s journey with mental illness.

What I Wish Christians Understood About Mental Illness

Why Should You Care About Mental Illness?

What I Wish Christians Knew About Harm OCD

What I Wish Christians Knew About Prayer and Mental Health Issues

The Challenges of the Topsy Turvy World of Mental Illness

If Insurance Companies Treated Cancer Like a Mental Illness

How I Wish the Church Would Treat Those With Mental Illnesses

Caring for a Parent with a Mental Illness

What I Wish Christians Knew about Anxiety

What I Wish Christians Knew about Caregiver PTSD

Dear Church: People With Mental Illness Love Jesus, Too!

Join the Conversation!

If you’re a blogger and have written a story about mental health issues and would like it included in this list, please email me at anita at blessedbutstressed dot com. I would love to grow this resource page into something beautiful for those who suffer from or have a family member that suffers from a mental illness. Together we can stop the stigma, bring hope, and love like Jesus loves!

If you do nothing else, please share this article on Facebook so that the one in five people who suffer from a mental health issue can find hope and healing!

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Praying for a Cure – Childhood Cancer

Julianna and way too many others

The words, “children” and “cancer” should never be in the same sentence, let alone the words, “childhood cancer.” It’s just wrong.   I might be extra sensitive, having battled through my boy’s childhood leukemia and still dealing with the consequences all these years later.  But I don’t think I’m special or unique.  I’m pretty certain that any one of us, seeing those St. Jude Hospital (and medical research facility) commercials, feel a little heart-tug.

I cannot help but follow certain families that come through prayer chain requests.  Even when I do not personally know them, it hits me hard!  It’s a helpless feeling – the fixer in me wants to jump in and help, but having gone through the journey, I know I cannot fix –  just help, pray, give and care.

This week, I’m inviting you to share with me. No, don’t panic, I’m not asking you to donate or give (although I’m sure that would be fine too).  I’m just asking for a moment of your time to pray.  A little girl named Julianna has been fighting a rare type of brain cancer.  The family has flown her to England for treatments and is now somewhere else in an effort to find treatment and comfort for their precious little one.  My heart aches.

Julianna – Praying for a Cure
Childhood Cancer

Click here to read just a little about her:  Julianna’s Journey.

Yes, this is a donation site, but it also gives some background.

There is also this facebook group, where you can follow her story.

So today, in the middle of sharing our blog posts and praying for each other.  I’m asking you to pray for Julianna, and all the other children out there fighting unimaginable battles, whether it’s cancer or some other disease.

 

I cannot wait for Heaven, where cancer will be obliterated and replaced with happiness and health.  Until then, let’s pray for each other!

I cannot wait for Heaven, where cancer will be obliterated and replaced with happiness and health.… Click To Tweet

Inspire Me Monday Instructions

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

1. Link up your favorite posts from last week!

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

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

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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