Wednesday, May 31, 2017

More testing

I think the last of the immunology tests are rolling in so now we wait while our team decides what to do.  It's pretty clear that Sam's immune system is in rough shape.  Spencer's may be a smidge better but not great.

No word yet on Shelbie's tests that are still pending at Duke on the Adenosine Deaminase Deficiency.  I'm guessing that test takes a chunk of time.

I was surprised to find that Spencer's cardiologist actually posted something into MyChart.  In the past two weeks of monitoring on the loop recorder, he has had 6 events of tachycardia or bradycardia, each one to be of significance.  That's a little disturbing.  His remarks are that he will continue to watch him closely.  The doctor even included images from the recording.  At one point, Spencer's heart rate dipped into the mid 30's!  I didn't even know a person could still be alive with a heartbeat in the 30's.  Apparently, my boys are defying the odds.  We see the cardiologist in a couple of weeks but I'm not guessing he is ready to pull the trigger on a pace maker yet.  Last month, Spencer had 4 problematic events with his heart.

I kind of think that Spencer doesn't even mention his heart issues anymore.  I think in some ways, it's become so commonplace for him to feel lousy.

I'm so happy to report we have had no gas leaks this week!  It's a miracle really! We are really enjoying the abundance of oxygen we have been spoiled with.  

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Sunday, May 28, 2017

Truth or Dare

We have had such an unbelievable week...gas leaks, carbon monoxide leaks, mice infestations, and this morning, I woke up to a racket in my backyard and found a herd of stray cats back there!! In my 6' high, fenced off yard. The cats looked a little beat up...seems they thought my yard was a safe haven.  I think that's a bad omen to have mice in your garage and stray cats in the backyard...Oh well.
I have been consumed with STORY this year.  Each day, I step into a story, either my own, or the story of someone around me.  We are all a part of each other's story, even if only in a passing role.  I have gotten tangled in May's story.  Every day, I take up my place in the story of my kids and every day, there's a stranger or two who crosses my path and I become part of their story too.

Here's a funny example...my hair.  Over the past year, I've been letting my hair decide what color it's going to be.  I am mostly grey and pure white now and I have grown tired of coloring it, but in a effort to let it grow out naturally and spare me the ugly stage, I've been slowly taking years of box brunette out.  I made my last move two weeks ago after my friend suggested I let her just get rid of the last bit of artificial color.  She's a hairdresser so I finally decided to take the plunge.  That's the real story...the truth.  So now...I'm all white and as the little bits of darker grey fill in, it will be natural looking.

Funny thing is...my hair is the talk at church.  Every Sunday, I get a range of comments from people I barely know.

My favorites?
"Are you going through something?  What's with the hair color?" they ask.
"I see you are having a midlife crisis...trying to be like the cool kids huh...with the white hair?"
"Still not happy with your hair color I see..."

I don't get these people really, but this is exactly what I'm talking about...who cares?  I am starting to think that they actually have dinner conversations on Sunday nights about my make believe hair crisis.  They have come up with a story to explain my changing hair color and they are so far from the truth...but they continue to dare to impose their story and opinions as truth.  It's their truth...It's not my truth.

I'm not much better...how many times we tell ourselves stories just to make sense of something we don't understand?

A few weeks ago, Sam was hurt by something his dad said and did.  I could tell he was deeply hurt and sad.  I put my arm around him and said, "I"m sorry Sam, that you are feeling sad and hurt."
His reply was the start of a story..."It's not a big deal, I don't really care."

I am really trying to teach my kids to be honest, and truthful with their feelings.  I think it's the only way we are going to get through these hard times we are facing, so I said to him, "Is that really how you feel or is that a story you are telling yourself so you don't have to feel hurt?"

He looked at me like I had just uncovered his hidden treasures..."I guess I do care but how is admitting that going change anything?"
"It is not but it's better to speak your truth than live a lie."

We talked about how it's okay to be disappointed in people, even people you love.  It's okay to admit to whatever it is your feeling.  I think there are big lessons to be learned in the stories we tell; the ones we tell ourselves, the ones we tell others and the stories we fabricate to make sense of the people and situations around us.

It's been an epiphany for me to realize this truth.  I've dared to consider how my own stories keep me small, or distant.  I've dared to not let the stories that other people tell about me, be my truth.  Sometimes, you have to stop and look at the story line you are living.  Is it true?  Is it congruent?  How is it changing you...what is it changing you into?

I think as a mom who lives with multiple challenges of being a single bread winner, taking care of three children with a chronic, unbelievable, progressing, disease, and my own dwindling health, there is no end to the stories I tell myself.  Many of which are the very stories that keep me going because sometimes, facing the truth might kill me...but still, they keep me at arms length from really connecting with this world.  I tell myself, no one wants to hear about my problems again!  That may be true but I really don't know.  I rarely venture to dare to find out the truth but continue along telling myself stories that everything is fine.  I'm fine.  We are fine...It's fine. But all the while...people around me are making up stories to squeeze me into and that's starting to not feel okay anymore.

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Thursday, May 25, 2017

Another Gas Leak

We got everything taken apart and put back together again by last night. It was tricky I guess, because it took three men to do the job.  I think the tricky part was getting the slope right in the main duct that joins the water heater to the furnace.

They assured me that everything was fine and I didn't have to call the city for an inspection.  They turned the gas back on to my house and I hesitantly decided that we would stay home last night.

This morning had to catch up on laundry, dishes and getting the house back in order.  We had a horrendous wind storm here yesterday my house was full of dirt because the workers had left my front door open because the door handle broke!  (Insert eye rolling here)

This afternoon, I thought I could smell gas again but that seemed impossible since they went through everything last night.  It wasn't long before the smell was filling the main floor, not just the basement so I called the company back that did the work yesterday.

Sure enough, another leak!  There was a leak from the gas line to the burner of the water heater.  I swear someone is trying to kill me!  How does this just happen?  I don't get it.  I don't understand how a water heater that has been installed for 12 years, been repaired three times, suddenly has three gas leaks.  It makes no sense to my simple mind.

If I wasn't crazy before...It's maddening really.  I'm feeling a little paranoid tonight and worry about sleeping here.  We have brand new carbon monoxide detectors and those haven't been registering.  The guy from the heating company said, "Well your levels of CO are only 1200 parts per million so that's good."

1200?  Shouldn't you have 0 PPM?  I want 0 PPM!!

I have this irrational side to me that wants to go out and buy a brand new water heater and start over.  Maybe that one is just too old and parts are getting corroded and leaks are common when they are so old...but water heaters are expensive.

I don't know what to do but I am extremely bothered by it all.


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Tuesday, May 23, 2017

On Second Thought

Years ago, I read a book called Practical Intuition.  It's about listening to your gut...the first time.  I have worked on this over the years, off and on.  This year, it's something I've been working on.

That first thought I have about anything...I act on it, if it's something to be done, or I'll write it down, if it's an idea or direction for my life.  It's been an interesting adventure.

Today...I'm a little overwhelmed with my first thoughts but glad that I didn't wait for my second thought.

It's been a weird day...Spencer has been out of it all day and slept on the couch for more than awhile and when he was awake, he wasn't really awake.  I kind of thought he had overdone it at the trampoline park last night.

I have been so tired all day, dizzy and a headache for the 7th day in a row.  Between us, we've almost emptied a bottle of Advil which is odd for me to have headaches.

I went down late this afternoon to get some stuff out of the food storage room and it smelled like gas. I didn't really think much about it because this has happened off and on all winter and it seemed to go away or I forgot about it.

I started dinner but had a thought to go back down to the basement.  I'm so good at talking myself out of things.  I hate to feel like a drama queen but I knew I should call the gas company.  They showed up within 5 minutes and as I walked him downstairs, I was going on about how it was probably nothing and I'm sorry to waste his time.

"You can smell the gas right?"  I asked.
"Nope." he said.

So...I was feeling like a loser to make a big deal of it but he got out all of his special tools and didn't take long before he said, "Geez...you've got some problems here!"

We have a gas leak in two places, a 1/4" gap in one area and the furnace was back drafting into the hot water heater.  There were scorched marks on the water heater.  He shut the main gas line off to the house and tape over all the gas connections with 'Danger' tape and Red ticketed us which means we aren't allowed to turn the gas back on until our HVAC duct work has been redone to meet code and then inspected.

He wouldn't let us stay in the house...plus we have no hot water or heat.
You can see where the metal is burned on the water heater. 




Shelbie had already left so Spencer and I opened all the windows, turned on all the fans and then left to get dinner.  We weren't allowed to turn on lights, run anything electrical etc.

This is our second evacuation for this reason!  How can they not get this right?  How have we survived all this time?  We all had enough symptoms today, I'm certain if I hadn't have listened to the prompting to call the gas company, we would not have lived through the night.  FYI...we have carbon monoxide alarms that are brand new but they didn't go off.

It's kind of a sobering thought on so many levels.

For the past two days, the dog has been a wreck,whining and crying all day and restless all night.  Monday night, he sat at the foot of my bed barking and whining.  This morning, he wouldn't leave my sight and would run to the front door scratching to get out.  He never, ever scratches at the front door.  When I would grab my purse to leave, he would jump all over me and cling to me.  Now, I get why he was so agitated.

We will be staying in a hotel until this gets sorted out.  Not exactly how I wanted to spend my money but such is life.

It's crazy to think this could have been our last night on earth!  In all seriousness...this could have been the end of our sad tale of existence.  Huh...it's weird to think about it.  I'm pretty sure this is going to haunt my thoughts for weeks to come.  If I am being honest here, there was a part of me that wondered about how great it might be to be done with this mess of a life.  I'm tired.  Tired in so many ways!


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Monday, May 22, 2017

The Bathroom Wall



Sometimes, I wonder what in the world I am doing here.  I'm not entirely sure my purpose, my plan, or what gives my life meaning.

At times, I feel like all we do is exist on a big bathroom wall.  We carve our name into the powder coated metal that is already rusting in the corner of a forgotten gas station in the middle of nowhere on the way to who knows where, and leave our mark...a subtle note that we were somewhere, we existed, and something inside us, urged us along to be seen...right there on the bathroom wall...or on any old wall for that matter.

The more time I have spent with May, the more I realize that we all want to be seen.  We want to be seen beyond our crazy, in spite of our walls and illusions of okay.  On every visit with May over the past 20 years,  we say our goodbyes and she says, 'thank you for remembering me.'  and inside, a little voice of my own whispers, 'thank you for remembering me.'   With every piece of paper she stuffs into her heavy laden car, it's as if she has placed another carving of herself on the bathroom wall...I was here.

Last Fall, on a particularly rough weekend, Spencer and I ran away to Bannack State Park; a ghost town and it changed me in so many ways.  Who was that last person left to lock up a town and walk away?  Did they carve their name on the wall to mark their existence?

As we walked through the buildings, some visitors had left their name.  I find the names of strangers so intriguing.  I catch myself wondering what they were like, why they were there.  As I read the walls that afternoon, I came across two that I couldn't shake from my mind...'David McC' and 'Cliff McC' from Radford College.  June 2, 1978.

Image result for when my soul was in the lost and foundIt's been months now and I still think about these two men often.  Two total and complete strangers who crossed my path decades ago.  For some reason...I do this...I can't not, find out about them.  So, I did.  I've been looking for these men since that day and I found 'Cliff McC'.  I found him in the folds of Facebook.  After waffling about what to do, I sent him a picture of his name he wrote so long ago with a note that said, "I found you."

He was happy to be found and part of me wonders if he's ever been lost.







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Saturday, May 20, 2017

Dreams for Sale

What does a dream go for these days?  I suppose it depends on the dream.

It's never easy to sell out; trade in a dream for a different model...

Today, I found myself wading through dreams...some more profound than others.  Some were sold and some are incubating til the time is right.


I love that I got to step away from the computer and sit and watch Sam showcase just a smattering of his Parkour skills at the Gymnastics Center.  Today was the equivalent of a recital for the gymnastics world. Sam works hard and his little struggling heart works harder and his lungs burn and his muscles ache but that's the price of a dream these days,  for Sam at least.

                 


Spencer sold his dream last night.  His van is gone.  The beloved  1985 Vanagon, the one that we all got attached to.  The one that was suppose to carry him out of this world and into one where he could explore and live and expand.  The time isn't right for that dream.  He found that he couldn't gather the resources to outfit it the way he wanted to.  The way he needed to for his dream.  Not all was lost.  He made over $4000 profit on the sale and another young man, with the very same dream will give it a shot.

And Shelbie...She's still dreaming.  Searching for that one thing that fills all the voids and seals the cracks of sorrow with gold.   Tonight, she is with her friends in Utah at the Lantern Festival and I think, when she lights that lantern and sets it free, a little bit of her heart will go along for the ride.


Just a thought:
                         "When a flower doesn't bloom we fix the environment in which it was planted,                      we don't try to fix the flower." Alexander Den Heijer

So often, we try to fix people when maybe it's not the person that needs fixing... So often, we try to fix ourselves into something different but maybe it isn't us that needs fixin'.  Have you ever wondered about that?
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Friday, May 19, 2017

Medical updates

Some of the boys' immunology tests are starting to roll in. It's times like this when I try to decide how much I love the 'MYChart' concept.  You see the results long before you ever get to talk to the doctor about the findings.  It can be a mental challenge more than anything.

Immunology testing is hard to interpret!  There is not one familiar term and it's not like they are measuring white cells- at least the neutrophils or granulocytes I know all about.  It's complex.  So, I can't say for sure how things are looking.  I could easily tell that Sam has not held titers to any of his immunizations and that is not a good thing...I know that.  Spencer seems to be looking in better shape than Sam.  I was actually hoping his immune system would hold some key as to why he can't eat anything without getting sick immediately afterwards.  Maybe it does and we'll just have to wait.

I have blown it this week in any follow up appointments.  I was suppose to get Sam in to our Cardiologist because things have gotten worse in that department.  I really don't want to take him back to our Genetic Cardiologist because he couldn't explain the heart issues last time and was pretty perplexed.  I did appreciate his honesty but it wasn't helpful.  I think he needs to see a cardiologist who specializes in the electrical outputs like Spencer sees but I don't love Spencer's Electrocardiologist at all!  He has a horrible bedside manner and sees to be annoyed with questions but, it seems weird to have all my kids with a different cardiologist.  I'm so conflicted about what to do, so I have done nothing!

I also didn't get Sam scheduled for allergy testing so we can start the prophylactic antibiotic.  Sam doesn't deal with his health issues very well because of his processing issues.  I was hoping things might calm down a little bit for him before we undertake new testing, especially on his heart.  He has a job he absolutely loves and to hear that he can't do that because of the stress it creates on his heart would be devastating to him right now.  With that said, in my own heart, I know he shouldn't be doing what he does but at what point do you just let them live as normally as possible and pray for the best?

It's a tough place to be and I don't have the answer quite yet.

Shelbie continues to struggle with her bulging disk.  She had a couple of good days but the pain still plagues her.  She doesn't complain though, she's a trooper.  She has a new boyfriend and he seems alright by her definition.  He seems to be respectful and that's a bonus! Boyfriends create this angst for her...at what point does she tell him about the health issues?  Again, a tough place to be.  Not that this is going to end in marriage but he asked her how many kids she wanted.  He wants 6! Conversations like that are a strained reminder that life is different for her.  As much as she wants to be normal, she isn't. The more he probes to get to know her, the more difficult life gets.

As far as Shelbie's testing goes, again, it's hard to say for sure but in my inexperience and study of Catecholamines, it seems that her testing came back low.  I'm not sure what low means other than depression, anxiety and other issues like that but high is what we definitely didn't want.  High  Catecholamines are responsible for brain tumors, which Shelbie has but not caused by Catecholamines it doesn't seem.

I may be changing my whole tune after I talk to the doctor because I may be wrong on all accounts but this is where we stand.

I feel neutral about all this right now.  I am still sufficiently worried but it's not disrupting my day.  I know the doctors are doing all they can right now...I do need to get over my denial and get Sam into the heart doctor...not going to lie, heart issues scare me and a 19 year old with a pace maker scares me even more.


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Tuesday, May 16, 2017

Mothers day 2017

 For the first time in...oh...I don't know...a million years at least, Mother's Day was tolerable!

Why?

Because it was Sam's birthday and I got to spend the day doing what I love, taking care of the people I love.  I mentioned some things from our rough week, there were other things I'm not really going to discuss at length but it put a whole damper on his birthday weekend.  I tried really hard to make it fun but there was a definite current of sadness that showed on Sam's face.

I don't usually go to church on Mother's Day but I had to play the organ which still brings me a great deal of anxiety but right after, I left.  I picked up Shelbie and we went down to see May and take her some chocolate.  She was in really good spirits this week.  A bit confused but she seemed to have a let a little of her resistance to the situation go this past week.

We hurried home and I finished getting a big dinner made and put the finishing touches on Sam's cake.  I invited their cousins over for dinner and then they all played games for the evening while I cleaned up and called my mom.



So, my mom is great! It was nice to take a minute to write her a little letter and talk to her.  She has taught me some of the most valuable skills in life.  I learned self reliance from her.  I learned how to problem solve, cook, sew and love others. She is wise and soft spoken and has come to my rescue so many times when the kids were little and I was sick for a couple of rough years. I love my mom and miss her!

My kids didn't really say much about Mother's Day all day but at 11:00 Sunday night, they walked me down to the family room with my eyes closed and surprised me with this!!!




This video is probably the greatest gift I've been given.  I love that my kids took the time to do this, it means so much to me.  I was speechless, just like I am now.  Mother's day has always been hard for me.  It was the day, some 12 years ago that I felt like the biggest failure in life as I faced a divorce.  Somehow, these kids make everything alright.
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Sunday, May 14, 2017

19 Years and Counting

Today is Sam's birthday!  19 years old!

19th Birthday
Last night, we went to his favorite restaurant Buffalo Wild Wings for a little birthday dinner and then came home to open his presents and have all his cousins over for S'mores and games.


I love these kids.  They are technically not my niece and nephew, they are my Wasband's but they still call me Aunt Kath and they come over a lot.  I love that they are all here in town going to school and that they get together often to hang out. I'm glad I didn't have to divorce them too!  I love them and I love their parents!  There's always a lot of laughter and fun when they come over.  So, Sam had a fun night in pre-birthday celebrations.

Sam has had a really tough week!  His heart is struggling and the doctor is concerned that he may need a pacemaker.  His heart rate is lower than ever and at our appointments this week in Utah, the doctor couldn't get a steady beat, lots of extra beats going on.  His blood work is also not looking good in terms of immune issues and the doctor is fairly certain that Sam will be starting Plasma transfusions soon.  He is running a few more tests but the preliminary results are not favorable.  If the insurance company didn't need more tests to justify the treatment, he would have started this week.

  In the mean time, while we wait for everything to roll in, he is starting some daily antibiotics but...there is only one that they dare try with his heart and liver situation but the problem is Sam has a history of allergic reactions to this one med.  So...I have to get him to the Allergist this week and retest him for Sulfa to see if he's outgrown the allergy so we can start it.  Sam continues to struggle with viruses and bacterial infections and his white count is so low! As much as it kills me to see him get to this point, I know it will improve his quality of life.

We also have to get back to the Cardiologist since his heart has suffered a decline in the past year.

So, needless to say, I'm glad I have these kids around to help me buoy him up.  He's a little depressed this week.

But!! What a trooper!  I love him so much.  He has handled school like a champ.  It hasn't been easy but he has pulled through.  He started his new job this week as they prepare for opening day at the trampoline park.

What I love about Sam is his ability to work with his deficiencies and find a way around them.  He reminds me of a mountain stream.  He is gentle and carries a feeling of calm and peace with him, yet he's mighty to forge new paths when something gets in his way.  He always sees a way to get around any obstacle.  I suppose that's why he's so good at Parkour!

I love the way he pretends to be annoyed by me but he's a softie at heart.  I love his sense of humor and I love that he lets me tag along with him when he goes long boarding! He is thoughtful and caring and listens well to help others...especially the girls!  They all rely on Sam for advice with parents, boyfriends, friends, jobs...Sam is always the one they turn to because he makes everyone feel important and special.

I am so proud of Sam.  I'm proud that he continues to be worthy of missionary service even though that probably isn't officially going to be an available option for him because of these health issues.  I know that he worries about what people think of him but I don't care.  I know his heart and it is golden!!

Here's to many more amazing years to watch this young man continue to Become.

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Wednesday, May 10, 2017

I think we're going to be okay

Maybe I've always felt this way but maybe not, I don't remember.

I realized today, that it's May 10th.  The day I got married for time and eternity a would be, 26 years ago!  26 years!   This coming Sunday is the day my Wasband called it quits and 21 days later, a judge agreed and 12 years from then, here we are.  Still stumbling along but still here nonetheless.

Of course, I still have plenty of thoughts left about these days I mark with a number and a feeling.  Plenty of regret.  Plenty of wondering what our family would be like if things had of worked out.  Plenty of wondering what I would be like.  Different.  We would be different for sure.  Better?  Who can say but for sure, different.

Last night, I had a thought, the kind with a little decidedness behind it, that we are going to be okay.  We might just make it.  It was strange to me, that this is the feeling that surfaced without coaxing, without convincing, just bobbed it's way to the surface of the churning thoughts I often drowned in. It felt good to try that idea on.  Yes, I think we might be okay. After all these years and wondering if I would ever get through this to something more hopeful...it came, however fleeting it was, I felt it.

Our FIRST picture as a family of FOUR.  They were so little. It's a horrible
picture,because I had a random 7 year old who was playing at the park take it
but really,
It's a sweet irony to me.  We always make do with whatever resources
we have. 
I wish that meant it was going to be easy now but these young adult years are hard on me for so many reasons.  Looking back, I feel like I've been running in a series of back to back triathlons and I am exhausted and in some ways, I feel like the next heat is starting again...and that has a certain tone of dread with it but I'm going to hold on to that clarifying moment that I think we are going to be okay.

Certainly, I couldn't do it without some great kids who are teaching me, forgiving me and offer up a team I can't refuse, to play out the rest of this game with.  What's really ironic...the day I was called by my attorney to tell me the Judge had signed the papers, I was sitting in the PICU at St. Lukes Hospital in Boise, all alone with my three sedated kids and it was the saddest moment I will never forget and here we are again, alone in another hospital, awaiting tests that will be sent to one specific location on this continent, thousands of miles away and here I sit again...alone with these thoughts and these amazing kids that are still here!  And I'm still here!  And, I think we're going to be okay.

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Tuesday, May 9, 2017

Life

It goes on...Life that is.

I need to get back to my daily writing.  It's much easier to journal when it's done daily...hard to believe but it's true.

Anyhow...Had a bit of a surprising weekend.  Shelbie ended up in the ER Saturday evening.  She had mentioned earlier in the day that her leg and back were bothering her but other than taking note, I went on with my day and so did she.  By 9 that night, she was pretty miserable and asked to go to the Urgent Care.  I was pretty concerned that what she was feeling was nerve pain and wondered if those large lymph nodes or the granulomas in her abdomen were getting larger and putting pressure on some nerves so I opted for the ER.

The past 6 months, it's been a crap shoot going to our ER.  For over year, they had awesome docs staffed and it didn't matter who we ended up with, they were kind, compassionate and competent.  Now, not so much.  There are two docs we always seem stuck with and they are not that great so I was really hesitant about going anywhere.

We lucked out and got a good doc.  We hung out for 6 hours until after a few tests, its was determined that she has a pretty bad bulging disk in her lower back and it was putting pressure on the nerve channel and that was causing her pain. I was relieved it wasn't the lymph nodes growing.  In fact, they saw those and they were stable from last year so that's good! I'm mean, it's not good she has a disk problem now but still...She has been in so much pain but it seems the meds are starting to work a bit better today so it seems more manageable.

Sam learned some life lessons this week.  His boss isn't happy that he got a job at the trampoline park.  It kind of upset Sam and we spent a long night discussing the situation.  It will be fine and he's learning a lot about how to handle difficult people.  On a funny note...he has two roommates from Albania and they suggested they have a nice apartment lunch on Sunday.  They said they would be in charge.  So...they ordered a food box from Gobble.com.  Ha ha...Salmon and Chicken and some other fancy food.  Once it arrived, they weren't exactly sure what to do to prepare it so Sam took over.  I'm not sure he really knew what he was doing...I mean, the boy who thrives on a 100 ways to make Ramen.  I guess it turned out great.

Spencer is doing alright.  His arm still isn't healing very well but he is out of the soft cast.  Tomorrow, he has a minor procedure on his thumb and that's unrelated to the arm issue so he may be out of commission a little longer.  He was so sweet on Saturday night.  I got Shelbie home from the ER close to 3 am.  He waited up and had the dishes done, and turned down the covers on my bed!  Isn't that the sweetest thing?   Sometimes, it's just the little things that keep you going.

In other news...I saw May again on Saturday.  I just see her slowing down before my eyes.  The first week she still had so much energy and now, she looks worn out and exhausted and seems like she is giving up the fight. I took her a bag of things I thought she might like but they confiscated everything but the bag of Milky Way and new reading glasses.  That made her really angry.  I called her tonight and she said she hasn't been feeling well yesterday and today.  I wish I knew how to better help her.

So...life.  It's interesting....and it goes on.




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Saturday, May 6, 2017

Weekend Update

This has been a memorable week!

Tuesday we had a little neighborhood action.  Strangely enough, I was home from work early and I noticed Police officers milling around but that happens every now and again so I didn't think much of it but then I noticed a couple of people wandering around, then a few more so I went out to see what was going on.  A 10 year old girl was missing.   As I got closer to the police officers and the father of the girl, I realized that I knew the father but didn't realize he had moved in down the street two weeks ago.

I talked to him briefly and then followed them back to the main road where more police officers were gathering.  Me, along with a few other neighbors stood back as the police gathered around one of their cars and talking on the radio.  More people gathered and more chaos started to ensue with all the extra bodies standing around so I approached the officers and suggested that perhaps they could tell us all how to help.  I also asked if anything had been posted on Social Media to which they responded, "No.  Can you do that for us?"

"Okay.  Tell me what to write."  They were talking fast and I was typing as quickly as I could on Facebook.  It was still so early, they had no pictures of the girl.  By the time the police were called, the girl had been gone just over an hour.

It wasn't long before we had tons of people ready to search and more Emergency Services arrived, an ambulance, the crime scene truck, a fire truck...it was all hands on deck and very impressive. The police were organized and gave assignments to everyone there. We all spread out going door to door, showing her picture and asking everyone to watch for her.  Shelbie and I were given a street to canvas that was two blocks from our house.  The very first people we spoke to had seen her walking towards the highway.  I ran as fast as I could back to the command center to give them word.  They immediately dispatched police to the outskirts of town.  By now, we were over an hour into things.

Long story short...she was found just before 10 pm several miles away, in the country.   This poor family has had a very difficult year with an ugly, public divorce among other things.  I felt pretty bad for this poor single dad.  Just before people started gathering, I asked him if there was anything I could do for him.  His eyes filled up with tears and I gave him a hug and said, "We are going to find her.  I know we will.  Just keep the faith."   It was a jarring night and by the time I got to bed, I was emotionally spent.

Wednesday, we attended the funeral of our friend's son.  It was a beautiful service for a beautiful spirit.  We fell into line for the procession out to the Interment.  Two years ago, we attended the father's funeral so when the hearse turned away from the direction of the cemetery, I became confused as to why the boy wouldn't be buried beside his dad but we were along for the ride.  We came upon a cemetery but it was clearly not the right one.  The Funeral home circled back around and after a long detour, we arrived at the right cemetery.  I felt like we were being punked.  As the family sat down, the undertaker came up and apologized that he had been on the phone and wasn't paying attention to where he was going!  Ha ha...Props to the guy for admitting that.  I have never in my life had a funeral director go to the wrong cemetery.

Afterwards, we stopped at a hole in the wall place for a late lunch.  We were in the smallest town possible and we like to make a habit of trying out places off the beaten path and this certainly was!  It's a bar in the back of an old gas station.  The gas pumps are the old fashioned kind and it brings back so many memories!   The place was packed with farmers.  We got the last table available.  Just as I suspected, the food was pretty darn good.  The biggest surprise came when the waitress came to tell us that there was no bill for our food, a man who had been sitting at a far table had covered our bill!!  I couldn't believe it!  I asked her if she knew the man and she said she had never seen him before.  I don't know if that's true but what a great thing!  I was very appreciative.

                                

Spencer and I made it to the temple this week and that was a nice change.

The rest of this week has just been busy with work.  When I wasn't working, I've been decluttering.  I seem to do this every other month so it's a wonder I still find junk to toss.  I even got rid of Sam's twin beds that were in his room.  I have decided that it's time he got a 'big boy' bed!  Seriously, he's been a good sport to sleep on a tiny bed for so long.  When I wasn't working and decluttering, I was getting things coordinated and ready for our medical stuff this week.  I think we are ready.  It takes a lot of work to get all the necessary papers and orders from Duke to our Hematologist and Consent forms filled out for the studies we will be doing at Harvard.

Shelbie has been having more episodes when she stops breathing.  It's getting a little unnerving because I don't hear her when it happens at night.  She can't yell or scream for me because she can't breathe.  She tries to run for me but collapses from lack of oxygen.  I started looking into what it would take to train a dog to sleep with her and alert me when she has problems at night.  A friend suggested I try a baby monitor but I'm afraid I wouldn't hear that either.

I have a good lead.  I asked my doctor about it and he just happens to train dogs on the side and he got me in touch with a lady in Salt Lake who trains medical service dogs.  I am hoping to meet with her this week on our trip down!  I don't know if I could afford a service dog, I know they can be a fortune.  I just need a dog to bark or come to alert me when Shelbie goes down. That's all.  I watched a Standard Poodle being trained at Huntsman on our last extended stay there.  She was being trained twice a day just outside Shelbie's room so it was fun to watch that process.  We'll see...

So...lots going on here.  This coming week is going to be a big one.  There's a huge chance I'm going to lose my two office cleaning jobs on Monday!  What a circus that has been and now...I may lose them to someone who undercut my bid by $500 a month.  We'll see.  I hope I don't lose them but if I do, I'll figure something else out.

There's also a good chance that Spencer will need to start plasma transfusions just like Shelbie.  Part of our visit will be to determine that.  With everything going on politically with the healthcare debacle, losing work and the possibility of starting another $13,000 a month treatment...well, let's just say I'm trying not to worry.

Whew...Life is happening fast!



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