Thursday, March 29, 2018

Questionable Prayers

Sometimes the hardest part of blogging is coming up with the title. 

It's been a whirlwind of a week around here; difficult at best.

The short story is that my kidneys took a turn for the worst on Wednesday which sent me to the urgent care for the morning.  It has become evident that I can't fix this like I thought I would be able to.  I did, however, drop my cholesterol by 30 points and my blood pressure is way down.  I haven't seen it this low in over a year.   So, I am on Prednisone, the drug of the Devil until I can get in to the Nephrologist again and I know I won't be able to avoid a kidney biopsy. 

Of course, that means I will be waiting a full month before they can fit me in.  I also made an appointment to see my Rheumatologist to get my Lupus under control but that's a two week wait just to see the PA.  Then another two weeks with another visit with the PA and then another two weeks when you finally get to see the doctor who will then discuss the course of treatment.   I am seriously debating switching doctors.  I just see this as completely counterproductive and a waste of resources. 

Anyways, I managed to get off the hook for the marathon drives to Salt Lake I was expecting this week!  I'm glad because I really feel lousy.  Thanks to the PET scanner breaking and Spencer being willing to pick up Shelbie from the airport tomorrow and bring her home.  She has been in sunny California visiting a friend.

Next week is going to be a tough one.  Spencer will have his bone marrow biopsy and Shelbie will have hand surgery.  The following week, they will both have their PET scans and another GI appointment for Spencer.

I have been doing all I can to keep up with work this week.   I have been getting by on hourly prayers but they've been questionable...as in..."Are you kidding me?", "How do you expect me to do all this?", "Would it really kill some great eternal plan for me to have one week off from the crazy? "  Questioning kinds of prayers.  I really try to offer prayers of gratitude, blessings for others, prayers of hope, ya know what I'm talking about.  But this week?  Nope.  Not happening.  Well, I'm still praying for others but when it comes to my own family, I'm speechless.  Literally, the opposite of what I pray for happens.  I don't get it.

I'm just pretty much over it.

Don't get all uptight on me...I'll be fine.  I'm not losing my Faith, just really tired and discouraged right now. 

Spencer will be here for the weekend but he is doing so poorly and I am doing so poorly, I'm afraid what should be a peaceful, Easter weekend will be something else.  Oh well, such is life.  I'm certain there will be an upswing in my attitude soon enough.

Sunday, March 25, 2018

No Words



Sometimes, there are no words to describe what happens in our life from moment to moment.

We had an unexpected turn of events on Friday.  Huntsman Cancer Center called and their PET scanner has broken.  The parts to repair it are coming from Germany so the kid's PET scans have been postponed a couple of weeks. 

As soon as I got the call, I remembered how annoyed and upset I got when Sam's pacemaker surgery was postponed a week because of a scheduling glitch.  When I found out in that week's time that the pacemaker they were going to use in him was recalled, I was so glad that Heaven orchestrated that glitch for us.

So, I have handled this setback with a little more finesse.  One good thing is that they were able to get Shelbie and Spencer's scans rescheduled back to back, so that will save me one trip!  This morning, I got the results of a 24 hour urine test Spence had to do.  It checks for the protein that carcinoma cells can produce and it was negative.  This doesn't mean we are out of the woods on this yet but it is a reassuring sign.  The protein can fluctuate and that is why it's a hard diagnosis to pin down.

I know without a doubt, when crazy stuff like this happens, that God is behind it and at some future date, I will understand and see why it had to be postponed.  Everything happens for a reason.

Today, I had to make a quick trip to Salt Lake to drop Shelbie off at the airport.  She is going to spend a few days in California with her best friend who moved away a year ago.  We met Spencer for dinner before getting her checked in.  It's a little nerve wracking to let her go.  She has been on her seizure medication for three weeks now and we are still working through some funky side effects.  I have noticed that she isn't having as many seizures, but she did have a couple yesterday. 


We ate dinner at Squatters, next to the fireplace.  It was cozy and felt good to not feel rushed.  Afterwards, Spencer wanted to try out his vintage film camera and so we messed around with portraits before heading to the airport.




Thursday, March 22, 2018

Fine Lines and Broad Strokes

Life is interesting and complex, difficult and rich. 

Life is a piece of art.

Life is made up of fine lines or broad strokes. 

Every decision we make, rests upon a fine line. Each choice rests upon the line we drew before. Within each decision, no matter how small,is a permutation of consequences and experiences; for good or for bad. Each one of these fine lines weaves together a beautiful life of rich detail, an embellishment of experiences and a depth of light and dark.  Like a finished portrait, we can see the extent of our mortality with all the joy and turmoil that makes it all so stunning, beautiful, necessary and revered.  In fact, along the way, the fine lines are the art of story...your story.  My story.  A story of defining moments, the whys that came from the whats...all the fine lines. 
Art Credit: Carlosaleman.com

But then, we experience the broad strokes of judgement and all the beauty, inherent in the fine lines, become smeared and blurred.  Detail is lost and gives way to assumptions.  That's all we can do really, is only assume we understand what the artist was trying to convey; like a story with a missing plot.
broad stroke painting - Yahoo Image Search results
Credit: John Erikson
I had an exchange of words yesterday in the support group I belong to.  There is a current push to raise a lot of money in order to obtain a research grant.  The group isn't even close.  An individual was venting about why people couldn't even give up $5 for the cause when childhood cancers get so much attention and support.  I realize she was walking her fine line. 

I made the mistake of trying to change her perspective.  I don't believe people are inherently bad and the apparent lack of support for the DC cause is probably nothing more than a disease few can relate to.  $5 may not seem like much to just about everyone, but for some it is too much and a sweeping broad stroke of judgment is not going to change a person's view into a 5 dollar bill.  

The conversation turned to why people (Me) wouldn't share our story on social media or share the plea for donations for this upcoming event.   I believe the people participating in the conversation had good intentions but their broad strokes left me feeling vulnerable, guilty and ashamed. 

Every day, I make decisions and walk a fine line about how I raise my children, advocate for them, where I put my attention and intention.  These fine lines don't always align with those around me. 

I made a decision 20 years ago that this disease would not define my family.  I determined that I would go to any length to protect them from worry and fear that this would cause.  That means, we have led a rather private, isolated life.  My circle of people who see the rugged reality is small, very small.  I  post rarely on social media about my kids disease and mostly exclusively, in times of severe challenges when we need the combined faith and prayers of friends.  You will never see regular posts from me. 

My kids have Dyskeratosis Congenita but they are not Dyskeratosis Congenita.  It has stolen so much from us, it is true, but I will fight tooth and nail to continue to protect them the best I can.  I know this has been a point of judgment I have lived with over the years.  People know they are not allowed to come into my home and ask deep questions about how I am doing in front of my kids.  If they do, they will always hear my standard answer that we are fine!   My kids rely on me to be strong.  It helps them be strong in return.  This blog is about the only platform I will share such details but even here, the lines are blurred and edited with a broader stroke.   And, it helps that my kids hate reading especially this blog.  

The support group I belong to feels that as parents, we need to bring attention the number of children and young adults who have passed away in order to help with fundraising.  This particular exchange, involved a poster they wanted me to share for the fundraiser, that listed all the children living with DC and the children who have passed away in a lighter color of text.  It does my children no good whatsoever to see how many people have died and how few are left.  I will not do it, especially in the name of fundraising and I stood my ground but I feel a great deal of shame and guilt for doing so. 

So, I will continue to draw the fine lines even if it means someone comes behind to draw across my story with a broader stroke.  

It's been a couple of days since this happened, and I feel more than ever, how important it is that we try harder to understand and see all sides because it's never the same story depending on the view.  Let people have their fine lines, let the art of their story flourish. 

Wednesday, March 21, 2018

Surgery next

Well, shocker...

Shelbie is going for hand surgery on April 6th.  One more thing to add to our list of appointments crashing in over the next two weeks. What a mess her finger is.  The hand surgeon isn't sure he can save her finger at this point since so much time has passed and it's been healing wrong since the break.

From the x-rays they took this morning, the bone at the top of her joint is teetering on the very edge of her joint below, not even remotely close to being lined up.  There has been such a deterioration in the cartilage as well.  On the x-ray, it looks pretty grim.  It's still red and swollen and he's concerned about that also.  In addition to the broken bone, he is concerned that the ligaments and tendons down her finger are twisted, stretched out and that is adding to the complicated situation.

The plan is to open up her finger, set and pin the bone back on top of the joint where it belongs and fix the ligaments.  If there isn't enough cartilage to work with, then he may end up having to fuse her entire finger so it never bends again.

I am irritated to say the least.  I feel like this could have been prevented but that is water under the bridge.  So, we will move ahead with yet another setback in our continuing saga of life. 

I don't understand sometimes...I sure wish I could find a way to make money going to doctors instead of spending it faster than I can make it. 

It's been a discouraging day.   I feel bad for Shelbie.  She has been very patient and a gracious host to this issue.  I know it seems like a pathetic problem, after all, it's just her little finger, not like an entire leg, something you really need.  Still, you don't realize how much you need something until it isn't there.  The doctor as well as myself are very concerned about anesthesia, and surgery, given her fragile immune system and inability to fight infection.  What could have been a straightforward situation has become serious and complex. 

It's often the little things that sift through the hope and makes you feel more despair than you should.  So, we wrestle against that now.  It's more important than ever to keep the right perspective. 

One thing that was funny today...I use to work for the hand surgeon we saw today from Pocatello, except he's never met me.  I got their social media off the ground when they first got started.  For two years,  I got to do a lot of writing and worked with their amazing office manager.  Once they were going strong, they had one of their nurses take it over.  It was funny to see the look on his face when he met the person he wrote paychecks to for a couple of years!  He's a nice guy.  They would send me tons of videos of this doctor performing hand surgery so I could clip pieces for social media and articles.  He also spends a lot of time training other doctors as well as educating patients with presentations and special clinics.  I love that about him.

Anyways...I know he isn't a miracle worker but at this point, we have no choice but to do the surgery. 

Monday, March 19, 2018

The Power to Change

PET scans are scheduled for the kids.  I think this has been an act of God to get this pushed through insurance in just two business days.  I was hoping to get them on the same day but that won't happen, so, looks like I'll be making the pilgrimage to Salt Lake, 3 times over 7 days.  Ugh.  I have no words.  If I didn't have a nightly job to attend to, I would just camp out on Spencer's floor at his apartment but I will have to be home each night to work. 

PET scans are very specialized tests to begin with.  A radioactive sugar is injected into the veins and any cancer lights up "hot".  Spencer's PET scan is even more specialized and all of the area hospitals in Salt Lake share the amount of radioactive sugar prepared so the amount he needs for his test is limited.  It's all pretty interesting, albeit, terrifying as well.

Such is life...it's chronic. 

Anyways, this isn't what I wanted to talk about today. 

Yesterday at church, we discussed in one of our classes, the topic of service.  The question was posed, "What kind of service did Christ do?"  I found that to be an interesting question.  I don't think I've ever thought about the kind of service Christ did, I always think of him in terms of miracles he performed. 

There's something about taking the time to ponder on things such as this.  I wonder if service is so much more than we have ever stopped to consider?  Here's what I've been thinking about, of the service Christ offered.

  • His service was always meaningful to the person receiving it and necessary.  No service given was just for the sake of saying he served.
  • He approached each service opportunity without judgement or hesitation. He was never above them, nor below them.  It was never a second nature, but his first and only nature.   
  • He gave a part of himself in the service and in so doing, his own heart was changed.  He didn't just hastily offer service as he scurried around tossing out miracles like confetti, he took the time the people needed of him.  He stopped what he was doing and treated each soul like a precious vessel, knowing they were capable of becoming more than they were. 
  • In Christ's service, the person he served was changed.  They rose above their trials.  They had been heard, witnessed and loved.  I believe that herein lies the miracle...Like water to wine, we too are changed when we are shown the least amount of love. 
I have plenty of moments when my life is changed because of trials, but not very often am I changed because of deeper lessons I learn.  This concept has become my new yardstick for how I view and measure the service I offer. 

How often do we hear of someone in distress and the first thing we do and sometimes the only thing we do is take in a meal?  Don't get me wrong, it's a nice thing to do and often a needed respite in the face of trials. We do that and we do that with love and we are efficient, maybe even providing more food than enough so they have leftovers and....if we take it in disposable containers, even better.  It's a great way to serve but other than a little extra time, it took nothing for us to do that, yet we consider it a job well done.  Could we have done something more meaningful? More necessary?  Given more of our heart?  Could we have been a little more like Christ?  I am rarely changed from a meal I have provided for someone, I left nothing with them, from my heart.   

Do I stop to see the people I serve as precious vessels that receive my love, as if God himself was offering the service?  In our service, do others become more or do they remain the same?  Am I a vessel of healing, offering a miracle for someone else? Does my service to them, change them, empower them, raise their spirits, lift their souls, turn their heart toward God?

I believe with all my heart that we rise to the level of love we are shown and therein, lies the miracle.  I believe more than ever, that the point to service is to witness the life and struggles of those around us.  Service is about giving away a part of us, the last mite we have; a sacred sacrifice.  Service carries the very miracles that sustain us in hard and trying times.  Like Christ, we must be close to those we serve.  

Some of the most meaningful acts of service I have received have been the times when someone stopped to listen to my story of yet another trial, another trip, another scare...the same old, over and over.  My favorite moments of receiving was hearing a long lost friend, or a close friend say, "I'm sorry...I don't know what to say." but then they stay to listen and love and remain close.  Those are miracles to me.  It's in those moments of being seen, that drives me to keep going, to be better, stronger, more faithful.  

We must never underestimate the power we possess, in the simple act of loving those around us.  It's more than tender thoughts, even more important than prayers, more than kindness; it's real, sacrificing service.  It is how we become more like Christ.  It's a powerful thought and one I needed to learn.  



Friday, March 16, 2018

Famous Last Words

Too bad I have this bad habit of speaking too soon!  I wasn't too worried about our appointments this week...

I wasn't expecting any earth shattering news at Hematology/Oncology yesterday.  I knew we might be looking at some further testing for Shelbie but I thought the boys would sail through the appointment without incident.  The last bone marrow biopsy the kids had was the Fall of 2016.  We are suppose to do them yearly but considering 2017 was a shambles in other areas of their health, I didn't think it would hurt to hold off for a bit.  We've actually had one of the healthiest winters.  It's been at least 8 months since our last Pneumonia.

Sam passed all his tests with flying colors...well, flying colors as in, he's okay.  His counts are trending down from when we started with our Salt Lake Team three years ago.  His white count is only 2.3 which is pretty low but I have seen him lower.  The cells he does have, look good microscopically.  We have decided to wait another year before his next bone marrow biopsy!  I feel okay with that plan right now.  Of course, if things change, we will biopsy him.  We have never gone three years between biopsies so this is new for us.

Well, Shelbie has a blockage of some sort in her right leg.  It's unclear if her enlarged lymph nodes are getting bigger and pressing on the veins and arteries leading to her right leg, or if there is a venous blockage.  She does have some larger lymph nodes showing up so we will get the PET scan as soon as insurance clears that.  Our doctor is one of the few Hematologists at Huntsman that does a finger stick prior to the appointment so he can look at the blood himself, under the microscope.   Shelbie's smear came back with some questionable white cells.  Not a lot but enough that he wants to keep a close watch on things. We will hold off on her bone marrow biopsy as well. 

Spencer is a different story and one I wasn't expecting. He had a fever! I had no idea til the nurse told us. His blood smear showed more abnormal cells than the doctor is comfortable with and he is concerned.  Here's the deal, when abnormal cells start showing up in the peripheral blood, it usually means there are many more abnormalities in the bone marrow.  It could be any number of things from Leukemia to Myelodysplasia or something else.  Our doctor wants to get the biopsy scheduled for Spencer, as soon as possible.

Sadly, it doesn't end there.  Our doctor feels strongly that we need to investigate Carcinoid Syndrome for Spencer.  He is the 4 th doctor who brings up the possibility of cancer for Spencer in the small bowel and I trust him the most.  He was pretty upset with how the GI department is treating us.  He thinks it is ridiculous that they are dragging their feet on things with Spencer.  So, he is ordering a PET scan for Spencer as well. 

He was telling us that just last week, he ordered a specialized PET scan for another patient he has who they also suspect Carcinoid Syndrome.  What are the odds of that?  The PET scan to diagnose that is relatively new.  I couldn't help but think that God has been in these details.  He explained to me a lot more about carcinoma cancer and how it differs from regular cancer and why it's so hard to diagnose.   So, I am praying that our insurance company will expedite the approval process for the bone marrow biopsy and the PET scan. 

As we were discussing the GI issues, he offered to go to bat for me and get the kids into a good GI doc.  I hope he can but I admitted that I thought maybe they just didn't like me and didn't want to deal with me.  He doesn't think that is the issue at all so we'll see how far he can get with things.   I told him they also don't want to deal with DC but again he said, "They don't have to deal with DC.  They are dealing with people with GI problems."  Agreed...try telling the GI department that.

Anyways, I was really caught off guard yesterday.  We all were.  Spencer seemed tough and handled the news with good humor but I can't help but worry about him. 

Tonight, the news is settling in and I'm worried.  Really worried. It's been a hard day and I'm sure the days to come will be filled with more worry than I care to think about.  Anyways, this is enough for one day.

Wednesday, March 14, 2018

Life

Life is happening fast around here, as usual.  It's been so nice having a week off from hospitals and doctors for the kids, but all good things must come to an end.  We start up again tomorrow with another trip South and Oncology Clinic.

Spencer has been working on finding his new normal and making plans for his new business venture.  He has decided to free lance as a Director of Production and Advertising.   Last Fall, before he got his job, he and a friend approached the Lexus dealership to ask if they could use a car to make an advertisement and if they liked the advertisement, they would offer them the finished video at a discount.    Spencer got his full time job shortly after and the Lexus video was put on hold.  Last week, he was able to finish it with all his extra time.  With his permission, I get to post it here! 

I'm so proud of him.  In just 18 months, through Salmonella, Heart Failure, Liver Problems, never ending GI troubles, he taught himself the art of video and cinematography.  He doesn't just run the camera but he plans the storyline and script, gets models, co-ordinates the shot and then does all the editing and sound.  He is very critical of his work but I think it looks amazing. 



I'm not expecting any shocking news for the boys with this visit but I am concerned about Shelbie.  I'm hoping we will be able to get the PET scan scheduled soon.  We've been waiting on this visit so that's my hope.  

One of these next posts,  I will talk about the Frequency Scan I did on Monday night for a couple of hours.  Pretty interesting stuff and I'm conflicted what I think about it.  I'll post more in the coming days. 
  


Friday, March 9, 2018

Here's to the Women

I really wanted to post yesterday about International Women's Day but I was too busy being an amazing woman!  Ha ha.  Just kidding!  I was too busy doing what women do...taking care of my little corner of the world.

I have a few thoughts on women...


  • Here's to the women who dwell in their God given nature with confidence.
  • Here's to the women who compliment the nature of men, who care gently and tenderly for them as they provide and protect their family. 
  • Here's to the women who do it alone.
  • Here's to the women who choose to be better than bitter, when the men in their world cease to see the wonder in their woman. 
  • Here's to the women who are the first to rise and the last to retire.
  • Here's to the women who patiently do the thankless, yet critical job of raising strong children, sick children, lost children, other people's children.
  • Here's to the women who put everyone else first.
  • Here's to the women who rise and fall but rise again.
  • Here's to the women who never give up even though no one would fault them if they did. 
  • Here's to the women who bravely face adversity.  
  • Here's to the women who quietly raise others with a level of love, few men will ever comprehend.
  • Here's to the women, the silent battles, the quiet cries, the worry, the anxiety, the loneliness, the isolation, the fury, the falls, all because she loves fiercely and feels deeply, the suffering of her children, family and friends; the inequalities of mortality, a fallen world.  
  • Here's to the women who face their fears and do it anyways.
  • Here's to the women who keep it real, raw, honest and vulnerable.
  • Here's to the women with soft hearts and strong spirits. 
  • Here's to the women who find beauty in ashes.
And...Here's to a God who had the wisdom to create a woman so strong, valiant, virtuous, courageous, brave, honest, raw, sweet, soft, tender, and loving.  A woman who, though breaks easily, finds a way to put all the pieces back, more beautifully and better than ever. 

And...Here's to me.  It's not often I give myself much credit.  

There are stories and experiences I have faced that remain cringe worthy to this day.  Stories that will never be written here; of being beaten down, committed to mental institutions, mistreated, mistrusted, misjudged, mistaken, unloved and unlovable at times.  There are more days than not, when I wonder what God intended for my life, if this is as good as it gets.  There are even more days when I wish it would all end. 

But then, I would hate to have it any other way.  I am stronger than any challenge I have faced, any accusation made against me, any friend who gave up and walked away, any man who thought less of me and never saw what a priceless gift he had been given- a daughter of God.  

Because, at the end of the day, we are all daughter's of God. God has entrusted us with the very heart of the world, to make this place better, to lift others through one kind deed at a time.  We are women who have the ability and prove everyday that we can make God, even greater than he is because of the amazing things we do for other's ever day! 

So...Here's to you!  We can do this...

Wednesday, March 7, 2018

Be Like Water

I went through this weird phase a long time ago, when I was into Chinese Philosophy.  So many things you didn't know about me!   I had several books on the subject, but my favorite was called I Ching, or in other words, 'The Book of Changes'.  There was a lot of wisdom in that little book.

Today, I came across another Chinese Philosphy book called Tao Te Ching.  There was the most beautiful passage of words...

            "The Supreme Goodness is like water. It benefits all things without contention.  In dwelling, it stays grounded.  In being, it flows to depths.  In expression, it is honest. In confrontation, it stays gentle. In governance, it does not control. In action, it aligns to timing. It is content with it's nature and therefore, cannot be faulted."

Wouldn't our lives be so much better and peaceful if we could live like water, without contention, staying grounded, honest, gentle...Sounds an awful lot like charity.

 I find myself these days in a quandary with my kids.  We are all just stuck in a very strange place.  All around, I see their peers getting great jobs, traveling, accomplishing many things, achieving goals and pursuing dreams.  I feel like there is a revolving door for each of us where friends come and go.  They never have a constant friend they can count on for support.  Eventually, they get tired of the health issues and rough days and they leave.  It's heartbreaking.  Loneliness and isolation is by far, the greatest trial my kids face these days.  As hard as I try to not get angry or compare, I find myself slipping into this space that looks a lot like grief, and feels a bit like despair. 

It was so much easier when they were little and guiding their path was easy, with the mere suggestion of something.  Now, I sit here, having to watch them struggle to find their way, when nothing is easy, and they each feel so sick.  I find myself thinking about the dreaded, dead end question...But Why? It's such a silly thing to expect an answer that I will be content with, because the truth is, I know why we suffer the way we do.  I'm just not very good with knowing exactly how to navigate the suffering in the best way, or how to teach my kids the resilience, faith and patience they need to endure these very difficult times.  I worry constantly that they are always on the verge of giving up on life and God.

So, in lieu of doing something helpful, because I don't know what that would be, I do nothing.  Our conversations, especially with Spencer, revolve around the weather and other trivial facts.  I have a very hard time connecting with him when he is so far and so discouraged and tired and sick and unmotivated.  Let's be honest, none of us are doing anything exciting to report on but merely surviving each and every day.   I can't say I blame him, he has been through the wringer lately.  I think my desire to fix the problems for them is more about my own discomfort in watching them struggle. 

Anyways...it's been a long week! 

This is breaking news for us though...Shelbie started her seizure medication!  It has taken her months to accept her condition and gear herself up to start a medication with a  small novel of horrible side effects.  Sadly, today, many of those side effects began to take effect and she's pretty sick but willing to stick with the medication in hopes that those subside.  It really is a huge milestone for her and I'm proud of how far she's come in accepting this. 

I guess the rest of the week, my goal is to Be Like Water.  Specifically, I want to be content with our nature...the place where we dwell. 

Sunday, March 4, 2018

More Sundays Please

As I wrapped up another 10 hour work day on Saturday, I was so grateful for Saturdays but then came Sunday.  I don't think I could live without Sundays.  We need more of them if you ask me. 

I try to guard my time carefully on Sundays.  I try to do more for my family than I'm able to do on other days of the week but just as important, it seems to be a good time to clear out my head some...take a deep breath and prepare for another taxing week.  Today, I had all my nieces and nephews over for dinner and games.  I love it when my house is filled with family. 

But anyways...today my thoughts have been on Hope.  I can't seem to hold on to hope very well and I'm not sure why.  Once I do grab it, it suddenly slips from my hands.  

In my pondering and wanderings today, I found a book, quite by accident, by Vaclav Havel- Breaking the Peace.  Vaclav was the first President of Czech Republic.  He spoke some on hope, and I love his definition.  He says, "Hope is not the expectation that things will come out exactly right, but that they will make sense, regardless of how they come out."

This was an ah-ha moment for me.   

Isn't this a profound statement?  Hope for me has always been about everything being right.  Not only being right but being right in the exact way I want it.  I think the wrestle for me over the past year has been nothing feeling right, nothing working out the way I think it should and in fact, without a doubt, the opposite of what I pray for always happens.  Though I hate to admit it, I have muttered to myself a time or two, "What's the point to praying?"  That in turn, leaves me feeling hopeless.  

For some reason, his statement on hope is exactly what I needed to hear.   Hope is that things will make sense.  That right there, is the heart of the wrestle I find myself in, day in and day out...finding sense in the chaos. 

I have a book I read every year, it's called Making Sense of Suffering by Wayne Brickey.  The title says it all, when we can make sense of suffering then we can suffer well.  Somewhere in that thought, hope is entwined.  

I'm not sure when things will start to make sense.  It's a thought that I continually ponder on.  Right now, the suffering we are experiencing doesn't make sense.  My perspective, going into this week has shifted some and hope feels a little more alive to me.  My hope will be that I will start to see the point, how the suffering is for our good. 

This week, I get a break from Salt Lake and doctor appointments for the kids.  I am going to try to get some appointments for me. I've stopped whining about my kidneys but I know they are still a problem.  My blood pressure has come back down a little so that's good progress.  My Ankylosing Spondylitis however, has exploded this weekend and I am in horrible pain.  I can hardly walk and I can't roll over in bed.   Every joint has limited mobility, I haven't had this amount of pain in a very long time. 

But...It's Sunday and Sundays are great and hope is alive again so here we go.

Friday, March 2, 2018

Chickens, Baby Dolls and Keith

I've had some things on my mind the past few weeks. 

It all started when I read an article about a nursing home that is trying to combat loneliness, depression and anxiety in elderly people by giving them a chicken to take care of.  Who knew, but apparently chickens running around the nursing home is just what the doctor ordered.  It gives the elderly residents something to do; meaning and purpose in their life and they aren't lonely anymore because they have their chicken friends. 

This is a real story.  I've owned chickens before. In fact, ironically, Shelbie was lonely one Easter season and thought getting a chick was the answer to her loneliness as well.  It wasn't...just for the record.  The chicken became lonely too so she bought the hen, a duck.  The duck and chicken were the best of friends until the duck flew away and the chicken went into a deep depression. We ended up parting ways with the chicken.  I think she went to a lovely family that enjoyed her that same evening, around the dinner table. And Shelbie...she was still lonely.

Just days after the article on chickens for the elderly, another nursing home was handing out baby dolls to their lonely and confused Alzheimer patients.  The baby dolls were intended to do the very same thing as the chickens, provide companionship for bored, lonely, agitated patients.  These patients tenderly cared for their babies.

Have we really reached this point in humanity where our solution to loneliness and boredom is chickens and dolls?  Was the notion of engaging our elderly with other humans even a thought?  Some crazy thought, in an old fashioned mind, that other humans should care for the bored and lonely elderly people?  Are we so busy and distracted that caring for one another has been reduced to chickens and dolls?

Yesterday, I had to drive Shelbie down to the city for a photo shoot at the LDS Temple.  We sat in the car waiting for her clients and this man walked past us on the sidewalk.  It was a boy a knew back in my college days.  His name is Keith.  I couldn't believe that 28 years later, I would run into him again.  I rolled down the window and called out his name.


He came right over and I started to stroll him through memory lane.  All 4' 9" of his tiny frame.

He was a funny character back then.  He spent a lot of time in the building where the Interior Design Department use to be.  He would just sit there and flirt with all the girls.  He use to say to my roommate, in a very high pitched voice, "You're such a pretty girl!"  He sounded a bit like a parrot. We would make conversation with him just to be nice, but I never really knew anything about him, nor did I really care.  He was different, some even called him 'special'.

We stood outside the temple talking for 30 min. He has been alone his whole life.  His parents have passed away.  His sisters are squatters in California, in a project called The Slabs.  He has severe diabetes and had a heart attack last year.  Keith recently got over influenza and was out trying to get his strength back. 
He said to me, "Have you ever been so sick you thought you might die?"
"No." I said.  "I don't think I have."
"Well, I was so sick last week, I thought I might die. I had no one to help me or feed me or check on me.  I was so afraid I would die alone."

His story touched my heart.  He was no longer the annoying boy that hassled all the girls.  He was to me, a Child of God yesterday, and it made me sad that I didn't see that before.  It made me sad that people are lonely and alone.  As we talked, I imagined all those lonely elderly people with chickens and dolls to keep them quiet and out of the way; just at arms length. 

And maybe for a moment, I felt a little like Keith.  Maybe for a moment, as you read this, there are times you are a little like Keith.  Another moment later, I gave myself a hard stare and wondered if I am ever quick to find an easy solution to the heartache of others, like tossing out a chicken or worse, the often over used words...my thoughts and prayers are with you.  Sometimes, that really is all we can do.  Sometimes, I think we can do more.  Sometimes, all one needs is to be heard.

So, Keith and I exchanged numbers.  I may not be able to take away all his problems but maybe I can provide moments of respite and thoughts of hope for him.

Dean Kamen said, "The world will not be saved by the Internet, but by the human spirit."

I might add...
We aren't going to save the world with more gun laws and stinging debates that pit us against anger.
We aren't going to save the world with more firearms.
We aren't going to save the world with more government.
We aren't going to save the world with more anti-depressants or mental institutions
We aren't going to save the world with chickens or baby dolls.

Only we can save the world.  We are bigger than we think we are, with a greater capacity to do more than we think.

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