Thursday, February 26, 2015

In Fashion

In our usual fashion, my usual fashion, I am bouncing between 'just fine' and 'oh my gosh what is happening?'

Today, we are winding down the week of travel and appointments.  At our local hospital today and just having to review and update Shelbie's health history triggered something crazy.  She is sleeping comfortably through her transfusion, though her blood pressure has dropped down to 85 again.  She did this last time too.  So, we go a little slower than usual.

The past week, I have been thinking that I really need to call our Oncologist and let him know where we are at with things.  I  keep putting it off because I don't feel like we are on good terms right now and I'm waffling between finding a new Oncologist and sticking with the one we have.

Today, maybe it's just the anxiety talking but I had that strong impression to call him.  It occurred to me that no one has addressed the enlarged lymph nodes throughout her body. She hasn't been running a fever or felt abnormally sick so that could actually be significant.

Again, I can't help but think of how staggering this is that we are facing so many complex problems at once.

God has promised that he will never give you  more than you can handle.   Maybe if I just stopped handling things...the madness would cease!  But, the next thought comes quickly...where much is given, much is expected.


Wednesday, February 25, 2015

It's a Miracle

Today, Shelbie had her cardiac workup.

As they say, Hope Springs Eternal.  It does.  I truly believe that it does.

Going into these tests today, I kept thinking, wouldn't that be amazing if everything was fine?  If, for some strange reason, the CT scan and Pulmonary Function tests were just done on a bad day but really, everything is fine?  I even told my wasband in conversation a day ago that I thought everything was going to be okay with Shelbie.

I thought... There is no way, I will have two kids with heart problems.  No way.  If I did, I don't see how they can classify these heart issues as anomalies or congenital.  I was feeling pretty good about these thoughts which was a big deal because up until today, it's been hard to keep the anxiety at a manageable level.  It's hard when you have already gone through something once and thought everything was fine but then it turned out not to be, as in Sam's case.  I was afraid of thinking anything but bad thoughts, or as I like to call them, realistic thoughts.

So, I was mighty proud of myself for seeing the half full glass this morning as we drove into the city. I didn't feel worried or anxious.  I felt pretty peaceful actually, as if it was just another errand to run.

Even when I walked into the same room we walked into with Sam, I was fine.

Even as the test began, I was fine.

Even as I heard the thumping of her heart...I was fine.

As they moved from the echo part of the test to the bubble study, where they inject agitated saline into her heart through a vein, I sat on the edge of my chair, fully expecting to witness a miracle.

I wasn't sure if the thumping I heard was my own heart or hers being magnified through the ultrasound. I was ready for my miracle!

The tech said, "Inject" as a sign to the other tech running the saline to push the saline through her veins.  As he did that, I watched intently to the screen.  I saw the bubbles flood the right side of the heart.  I watched as all those bubbles flooded the left side of her heart!

In a bubble echo study, those bubbles are suppose to stay in the right chamber and not cross over to the left.

I swear, I let out an audible gasp!  I could not believe my eyes!  I covered my mouth and fell back in my chair!  My wasband asked if I saw the bubbles.  I quickly whispered to him where to look for the bubbles on the second injection.   Again, that left chamber filled with bubbles.  My untrained eye saw it, my wasband's untrained eye saw it and you could see the look of shock on the Radiologist's face as he saw the bubbles cross over.  It wasn't just one or was as if the entire injection slipped over.

I guess I didn't get the miracle I was hoping for.   It never hurts to dream.

As I was fixing dinner, I thought again about miracles.  You know, to look at my kids, they are my miracle.  They look so healthy on the outside compared to what is happening on the inside.  A miracle.  They have obviously had these problems their whole life and we just didn't know about it and they have accomplished so many wonderful things.  Amazing things.  They have pushed their bodies to the limit and God has preserved them when in reality, they shouldn't have done any of it! It really is a miracle.  It's a miracle that we are getting through these tough problems as intact and happy as we are.


Tuesday, February 24, 2015

Welcome to your nightmare

This post is not intended to offend anyone...I know there are many mom's out there who have kids with DC who read my blog so please don't be offended.  

How's that for a fine way to start this post?  

Yesterday in the mail, I received our Welcome Packet from Dyskeratosis Congenita Outreach.  It was actually so much good information and so kind of them to offer these resources.   It included two t-shirts, some brochures, a newsletter, a card with many DC families pictured on the front and hand written message from the organization.  There were rubber bracelets and ribbons to wear for Rare Disease Day coming up on the 28th.   As a welcome was pretty sweet!  But...

It was a welcome packet to the disease that is going to take my kids' life!  I'm not going to struck me as a bit twisted. 
Welcome to how it ends!  
Welcome to your worst nightmare!  
Welcome to the very thing you dreaded for the past 5 years!  
Welcome to the biggest headache of your life!  
Welcome to your new best friend...a box of Kleenex!
Welcome to the next big thing
Welcome to your insomniac life
Welcome!  Enjoy being rare
Welcome to life beyond normal.

I could go on and on but I think you get the picture.  It was just weird.  I'm not being ungrateful, I'm not, just so disconnected.  It was truly, such a nice thing to receive.  

Honestly, for being such an exclusive group  with such few people, this organization sure has their stuff together.  I'm pretty impressed.  I can tell that they really care and they are trying so hard to get the word out about this horrible disease...horrible when you are living in reality and not denial!  Trust me, those are two separate worlds where we spend an equal amount of time.  

It's like denial is our summer home... the place where we run to escape the storms, when we need a break, a little sunshine.  The place where we can sit on the beach of  Notta Care and bury our feet in the sands of time that run effortlessly through our toes, hardly noticeable.  In this world, you forget all your troubles.  This is the place where the Cracker Jack band plays and you really are happy landing on a chocolate bar! 

Then there is reality!  On the corner of Shock and Awe!  It's the place where nothing makes sense,  and you scratch your head in unbelief.  Where stress is alive and well and anxiety thrives.  Time does not stand still the land of reality.  Nope, you journey back to the past, then jump to the conclusions of the future.  You spend very little time in the present and no time in denial. 

So, ya...Welcome to the land of 'Now You're Crazy'  No one gets out alive so you may as well enjoy the journey!  


Monday, February 23, 2015


I remember being pregnant with all three kids, at separate times of course, and that end stage of being fat and you have the urge to clean everything in sight.  You make a pile of freezer meals and then wait for the baby to come and change your life forever.

This weekend, I had that very same feeling!  I couldn't work hard enough or fast enough to get everything done that was on my list.  I'm still in that mode.  In fact, this morning, I had to clean someone else's home and did a bunch of extra things for them too.  I'm not exactly sure what is happening with these feelings but I guess I may as well go with it.  My house is getting cleaned!

I enjoyed last week just being on cruise control.  There were frustrating days but for the most part, we clicked along like nothing out of the ordinary was happening to us.

Saturday, I felt super distracted which was a horrible thing.  I play the organ at the temple and I have never played so many epic mistakes like I did on Saturday.  It was like I had never played a piece of music before.  I didn't dare glance at the congregation, I could pretty much feel their glares on my burning hot face with each mistake.  I was so glad to when the hour was up!

Sunday, I felt the familiar waves of anxiety lapping across the day.  With each wave of anxiety came the urge to throw up but, I kept it together.

Today...I am so tired!!  Exhausted in every way, distracted and more anxiety. I feel like I just spilled a giant glass of milk all over the counter and I'm trying to scoop it all back into the glass with only my hands.  In my mind, I'm madly trying to achieve the every drop of milk.

I guess, I feel like this week is the beginning of our glass of crazy being knocked over.  I am watching it unfold in the most surreal, slow motion playback in my brain!  I wonder how far and fast it will spill over the edges, unconstrained?


Sunday, February 22, 2015

A quick update

I had planned to write more tonight, but I ended up in a 3.5 hour homework jam with Sam.  English.  Fun times.

Here is a quick update...we have appointments!  Eureka!  And lots of them.

Basically from Tuesday on, we will be at various hospitals and clinics in the area.  Three different hospitals, and specialties.

Tuesday is Ophthalmology for Shelbie.  When we forget her eye drops, the inflammation comes back and now it's in both eyes!  I so hope this isn't chronic!!! Ugh...I'm pretty sure steroid eye drops for a lifetime isn't a good practice.

Wednesday is cardiac workup and testing for Shelbie.

Thursday is IVIG all day and in the evening we will head to Utah for Sam's early morning check in for his cardiac testing.

I'm exhausted just thinking about all this and trying to work.  More tomorrow!


Saturday, February 21, 2015

Just Like Me

It's been a couple of months at least, but I will never forget when Shelbie was crying after an unfortunate friend incident and said, "I am turning out just like you!!"  Then sobbed and sobbed.  She had been accused of being too nice!  That was the big dilemma.  Apparently, friends today don't like having friends who are too nice.

Hey...what's wrong with that?  I wondered.  There are worse people you could be like... I think.

I've thought about that many times and how we really do become very much like our parents.  I wouldn't say that's a bad thing...unless your parents are bad of course.

I have great parents.  Recently, I was asked where I got my faith from.  Well, it's been a lot of hard work but the foundations of my faith started at home, with good parents who instilled values and character, among other things.  They gave me the tools to become a disciple of Christ. I remember reading scriptures with my dad at 6 am in their bedroom in front of the fireplace.  It wasn't a lasting tradition, but it was one that I remember clearly.

Lately, my kids have been noticing things I do and wonder why I do them.  I've never given it much thought but then after a few moments of analyzing it, I got it from my mom and dad.

For example...Whenever hard things happen, we eat.   Whenever my kids show bravery and fortitude, we eat.  It never fails.  They asked me, not long ago why I always turn to food when we are happy, sad, mad...

I remember how going to the dentist was a tragic event in my life...always!! Always tragic.  It still is.  I would rather have my appendix taken out than go to the dentist...seriously!  I think the nurse would have been much happier if she could have met us out in the parking lot with some portable Nitrous Oxide because getting to the chair wouldn't have been such a battle.  Our dentist's office was in a big mall.  After the ordeal was over, my mom would treat me to a bag of powdered sugar donut holes!! Ha ha...after the dentist!  I still remember that little kiosk right under the escalators.  Fun times!

Well, growing up, food was a big part of our family.   My mom is a great cook and would often have dinner parties.  I loved those dinner parties and the house full of people as my mom served the most fancy dishes.   Eating dinner together was also very important in my family, as it is in my family now.  Dinner meant we were all together and being all together meant I felt love.  On vacations, we would seek out the best ice cream or slice of pie and eat it in the park, on the beach or people watching downtown in a big city.  We were together, loving and having fun.  So, I guess you could always meant family, love and happiness.

I guess that's why I turn to food when things get means we are together.  We are going through the hard times together and they will always be loved.

One of my favorite traditions with Shelbie during the crappy teen years, was going to Jack In The Box every Saturday night after her date.  We always went in our pajamas and would sit and talk about the evening over some late night snacks.  Having important talks is always best done over food!  They are relaxed and open up about anything and everything!

During the week, we sometimes head to McDonalds at Midnight then come home and talk and eat!  It's been a lifesaver during the past few months.  It's really helped Sam to get some hard feelings out of his head.

I drive my kids crazy with this little thing.  Whenever they leave the house, especially to drive into the city or on a longer trip, I always remind them of the worst things that can happen.

Last month, Shelbie was going to go to the ice sculptures in Wyoming.  It was snowing and I knew the road there would be very icy so I simply reminded her..."Hey, give yourself lots of time because the roads are going to be icy, snow covered and possibly some black ice.  If you hit ice, what should you do?"

Shelbie gets so mad!!! "MOM!!! What the heck?  Why do you have to freak me out like that?  You make it sound like I'm going to die!  I just won't go!"   Ha ha the time she's done ranting, I'm doubled over in laughter.  (I think I get this from my grandma who could never stop smiling and laughing even in the most serious moments.)

I do this a lot really, in just about any circumstance.    The only thing I can think of is when my dad was teaching me to drive, he would come up with these scenarios of what could happen while driving and then I would have to be quick to answer how I would handle it.  Like...Your tire blows out...quick, what do you do?  It was all in an effort to teach us defensive driving skills.  I didn't realize how much I use that now in every day life.

It makes me smile when I think about how much I have become just like my parents.   And...I laugh even harder when I see my kids becoming just like me!


Friday, February 20, 2015


One of my favorite, inspiring people is Brene Brown. If you haven't read her books or listened to her TED talks or YouTube videos...You are missing out on some incredible knowledge!

This is one of my favorite videos on Empathy.   Understanding Empathy and Sympathy is hard!  It's hard to know how to handle other people's bad days.

Last night, Shelbie was having a ton of pain in her left arm and it was hard to breathe.  She had had a rough afternoon and evening and a lot of stress had been building with her.  It was hard to know what to do for her.  Since watching this life changing animation from Brene Brown, it has changed the way I interact with my kids when they are hurting, either physically or emotionally.

It helps...It's hard to not silver line the bad stuff.  It's hard to just sit with the fear, to feel it.  It's hard to expect empathy but only get sympathy...or nothing.   Life is just hard.  I am learning to let things be but connect in that dark hole that people around me often get stuck in.


Thursday, February 19, 2015

The Thing About Trials

Here's the thing about trials...

We... or I, have somehow 'grown-up' with the idea that you get one trial at a time.  Obviously, I have learned, now that I'm all grown up, that this is not the case.  For many people, this is not the case.  But the other thing I have realized, just recently, is that sometimes, it isn't the obvious thing that is your trial.

The obvious trial(s) for us is clearly the heart, lung, kidney issues in two kids.  This has been hard but all the little 'satellite' trials that come with this are what is killing me!

For example...Patience!  It has been really hard to sit in an appointment and listen to doctors say how serious these problems are, and then not be able to get the next test, or the next appointment schedule for weeks, even months out!  Do you realize, it's been three months since we found out about Sam's heart and lung problems and we still haven't been able to do the cardiac MRI?  Three months!  It's been a full month...since the cardiologist wanted the test done!

Finally...late yesterday afternoon, I got ahold of the scheduling nurse to get the cardiac MRI scheduled.  Insurance was done fighting over a week ago!!  I have called her every single day and she hasn't returned one call.  I asked her why she didn't return my calls and she said she didn't get any messages from me...I hardly believe that but whatever, it's scheduled for next week.

It's the same thing for Urology...they are booked until the end of April!!  Supposedly, Sam's ureters are a mess so waiting two more months is either going to kill him or it will be resolved so what's the point to even making the appointment?  Yet, the radiologist said, "This is not looking good."

Pulmonology...same thing.  I scheduled Shelbie to see the new pulmonologist because you can't just keep living with lungs that are filled with nodules, lymph nodes and some unidentified fluid or mass but the appointment isn't until the end of March.  I asked the secretary if we could get in sooner since she has all these serious problems.  She said, "Well, hold on"  I guess she went to consult a nurse on the CT scan she had and came  back, "This is very abnormal for sure but the end of March is still the best we can do."

Still trying to schedule the bubble echo study for Shelbie but again...I've got a very annoying nurse dragging her feet.  Apparently, she went on vacation and didn't get anyone to take over her duties for her...

So, I'm trying really hard to keep my cool but it's really hard!  We wait and wait to find out our fate but in the meantime, we lull ourselves into this sense that everything is okay and it was all just a bad dream but then something happens to remind us that we are sitting in a very precarious place...therein lies the real trial.

The up and down of emotion.  Nothing is steady.  Nothing is static and though I say we are "Status Quo"  We are not.  And all this time waiting for what is suppose to be really important, comes across to people as being...not important or things would have happened by now.  For crying out loud, our friend found out the same day about his heart problems that we did and he is already a week out from surgery!  Just to put this in perspective...One of Sam's heart valves is the very same diameter of our friend's failing valve that put him in the high risk category for sudden cardiac death.

I blame Medicaid for all the waiting, you get what you pay for!   And...what you get is a committee of bureaucrats who analyze your case and decide if you really need the tests or not.   I can't just call up a specialist like I use to and schedule it myself.  I have to have a referral for everything and rely on secretaries and nurses who are just showing up to do a job and get paid.  Very few really understand the emotions and fear involved.  If a nurse forgets one thing in the referral, I have to call them back but the secretaries won't let me talk to a nurse so I have to leave messages, often multiple messages and then wait til the nurse finds the time to get back to me.  It can take days to get one question answered!

So frustrating...hence the hardest part of the trial.


Tuesday, February 17, 2015

One Mystery Solved

The eye mystery has been solved!

Can I have a Hallelujah??!!

If I had a dollar for every time I heard a doctor say..."What you have is a very rare condition called..." I would not be sitting in this arctic town...I'd be laying on a white sands beach somewhere, living in the coolest tree house ever!

Anyhow...Shelbie has a rare autoimmune condition called Staph Marginal Keratitis affecting her cornea.

Basically, we all have a certain amount of staph bacteria on our eyes.  It's actually there as a good thing.  Shelbie's body has decided it really doesn't want the bacteria hanging out in her eyes and is causing an angry outburst against it.  So, what looks like a horrible case of conjunctivitis is actually inflammation with a touch of infection.  It is not contagious in case you have seen her.

Hopefully, some steroids will calm things down, however, it can be a chronic condition. Let's hope it isn't chronic because it is really painful in addition to the fact she can hardly tolerate any amount of light.  We've been living as Vampires with the blinds closed up tight.  She sits in the dark basement for relief. I think we caught it soon enough she won't have too much scarring and tissue damage but we won't know for a week or so.

Next week, we go back to make sure things are moving in the right direction.

I can't even tell you how good it feels to have one problem with an answer!  Just one!  But that's one less mess to worry about!

Just as a side note...Got Spencer's letter today.  I have not told Spencer anything about what is happening around here.  I just tell him the good things and if I can't think of good things to tell him, I just keep it general and generic.  Lately, it's been pretty general. Again, he said the most profound things..."I know you are doing great and all, but when the trials come, remember it's because the Lord trusts you in making the right choices through it.  It is just preparatory to a glorious and wonderful eternal life.  Just think how much  more it will mean to you, knowing you worked hard to follow the Lord and make the right choices so that we may enter the Kingdom of God."  He went on to quote a line from a football player..."You're already in pain, you may as well get a reward from it."

I guess so!  Man, we are hanging in there.  I am grateful that Spencer is in tune to our needs. We are doing much better this week as far as our spirits go.  I was pretty frustrated this morning with trying to line up all of these appointments and nothing working out.  Part of trusting God is trusting his timing too!

So, on to the next big thing!


Monday, February 16, 2015

A Missionary Moment

I'm really grateful for the tender mercies I find in each day.  Today, a special moment in the donut shop.

I was helping my friend's daughter run some errands and one stop included the donut shop.  We were looking at the donuts and she was deciding on the flavors, when the lady behind the counter said, "Your son is teaching my dad."

Keep in mind, this woman was a total stranger to me.  Her face didn't even look familiar to me.  I have never met her, ever!   I was a little confused because when she said that, I was thinking of Sam in my head.  I thought...What?? Sam is teaching her dad?  What is he teaching him?  Parkour?

So, I said, "Really?  What is he teaching him?"
"The missionary discussions." she said.
"OHHHH....funny!  I was thinking of my younger son!  Wow!  Who is your dad?"

She went on to explain that her father lives in Grand Junction and Spencer tracted him out when he was there a year ago.  He ended up back there and tracted him again.  She said that Spencer is such a great missionary and her dad doesn't trust anyone else like he trusts Spencer.  "He loves Spencer!", she said.  She has all the hope in the world that Spencer will be able to help her dad accept the gospel.

That was so nice of her to say that about Spencer.  I was still confused as to how she knew me so I asked, "How did you know I was Spencer's mom?"

"Oh...bec...Actually, I don't really know how I knew!"

It was a cool interaction and I was grateful to hear that Spencer is making a difference to this family.

As for updates today...another crazy day!

Shelbie's eye just keeps getting worse and Sunday night, her vision started going blurry so I took her back to our doctor today.  After another thorough look and a second opinion from another doc in the clinic, they concluded that she has a very serious eye problem and it isn't an infection.   They think it's an issue with the collagen in her eye.  They said that it can cause vision loss if not treated promptly!  It was too late in the day to get in to the ophthalmologist so first thing in the morning hopefully!

While we were there, the CT scans came through that we've been waiting for to compare to the x-ray.  The doctor grabbed the report and came in to read it in front us.  I had never seen it so was interested to get my hands on it.  Turns out the pulmonologist misinformed us again!!!  I would even say flat out lied.  There is nothing conclusive that suggests Shelbie has a fungus in her lungs.  It does say that her lungs are scattered with nodules which could be from....and then a list of possibilities, including cancer!   There is no way to know unless they are biopsied or something!  Not only that, she has some massive lymph nodes up against her kidney and her aorta as well as several enlarged nodes throughout her body including her lungs as well!

I watched our doctor's jaw literally drop!  He said, "I can't believe what I'm reading and he said it was fine, not to worry!  This is not fine!  We need to get her into a different pulmonologist as soon as possible!"

Good grief...when is this going to end!  I can't believe what is happening.  I had a friend suggest I must feel like Dorothy from Wizard of the middle of a tornado!  Yep, pretty much!

Still waiting on Utah to return my 5 calls!!



I think this is a common title for me on this blog, but my perspective continually changes.  I guess that is to be expected when we are always in a state of flux.

Friday, my Bishop stopped by to get the scoop on the nonsense happening here.  He offered to give me a blessing.  In the blessing, he said two things that I will share, that struck me as interesting and truly a blessing.

1.  He said to do as much studying and research as I could.
2.  To listen to the doctors and to trust them.

They are both incredibly interesting to me because why would God need to remind me to do studying and research about my kids' condition when I spend a huge amount of time doing that anyways?  After that thought, I remembered that a few weeks ago, I found a lady who has DC and she is middle aged.  She has had a bone marrow transplant and several different forms of cancer.  She is still alive!  She has a quality of life though her life has not been easy.

When I thought more about that, I realized that maybe finding out all this bad news about my kids isn't because they are going to die anytime soon, maybe it's because they are going to be healed.  Maybe, finding all this out is a way of preserving their life.  It's crazy I know...but Sam can't keep living with a bad ureter.  Maybe we caught that just in time to treat something small before something bigger happened.  Same thing for all the heart issues.  I definitely want to get these holes fixed and maybe that needs to happen before the next big thing comes along.

So, that much understanding gave me hope.  Something that made sense to me and I appreciated that switch in perspective.

The second blessing that made an impression in my mind was that I needed to trust the doctors and listen to them.  I was not too keen on listening to the Cardiologist on Friday when he said Sam's kidney and ureter problems were urgent.  I have been doubting the whole fungus story with Shelbie too.  I even asked the Cardiologist if we could just deal with the kidney issues after the heart issues and he said "No, this is serious."

Today, I will be setting up that urology appointment, for this week hopefully.

I also did a lot of studying and research last night and came upon some really interesting research out of NIH. More studies on X- inactivation of the DKC gene.  Shelbie's diagnosis remains in question because she didn't show up with the DC mutation, however, she has more symptoms than the boys do.   I have read probably 6 articles now on girls who had no sign of the gene yet had the symptoms.  They call that X-inactivation.  Because girls get two x Chromosomes, one is considered poor, since I am a gene carrier and likely passed that on to Shelbie, but the other one is good since it came from her dad. Typically, the good gene takes over and the person doesn't have the disease.  Sometimes, the bad X can become fired up and take over in certain areas of the body and the disease process begins.

My hunch is that this is what is happening to Shelbie.

One article I read, even stated that a girl with x- inactivation had lung nodules and calcifications in her lungs!  Another one read that eye problems, such as conjunctivitis is common in DC kids.   Shelbie's eye is not getting better,  in fact it is getting much worse.  Last time this happened, she had blood leaking from her eyes!  It was horrible.

I can see how God is leading me along.  Through all this learning, I will be able to work better with our doctors and continue to solve these problems.

It still makes me crazy to think how quickly the problems came on and how they keep coming.  That part, I haven't sorted out yet but clearly, this is the DC disease process, not just a random collection of bad luck.


Sunday, February 15, 2015

Valentine's Weekend

We made some great attempts to have a fun weekend.  We did have a pretty good time.

We headed down to find something to do in the city.  We ended up at the Museum and the Crime Scene Insect venue.  It was okay, not riveting by any means but we had a good time.  We laughed a lot!  There were hardly any other people there so we really had freedom to act as crazy as we wanted.  There was one guy there by himself, he was probably in his late 20's and it seemed like he enjoyed hanging around behind us.  Every now and again, I saw him trying not to smile at our jokes.

They have this massive poster...the whole thing is about how insects can help detectives determine how, where and when a person is murdered.  So, we had a good laugh over this!  I know, we are weird like that.  You gotta laugh!

 They had a dress up area to get your mug shot.  Sam and I were watching this video and one of the museum workers took Shelbie by the arm and dragged her over to this photo area and dressed up so Shelbie could take a picture of him!  WHATTT?  When Sam and I realized what happened, we ran to rescue her.  It was hilarious!  He was just a nice old guy!
 Finally, on Valentine's Day, I made some giant sugar cookies and bought them a few $1 scratch off lottery tickets.  We have often joked that the odds of getting Dyskeratosis Congenita is literally 1 in 1,000,000,000.  We have better odds of winning the lottery!  Then, in light of what has been going on, I just couldn't resist getting some lottery tickets!  They won a grand total of $3!! Ha ha...

We may not be rich in terms of million dollars, but we are rich to have each other!  I did win the lottery when I got three of the best kids ever!

Saturday, February 14, 2015

Another wrench

Still no plan and yet another wrench in the already chaotic drama unfolding.

Friday afternoon, the kids and I decided to get out of dodge and try to find something fun to do.  We went to the museum and we were having a great time until the Cardiologist's office called me.

I answered and they informed me that they got Sam's CT scan back of his kidneys and abdominal area.  It was abnormal!  Of course it was.  It couldn't just be normal could it?  One of his ureters is extremely swollen and inflamed.  It looks like his kidneys have been through 'something' probably a kidney stone passed and did some damage on the way out.

Pray does one pass a kidney stone without feeling any pain at all?  NONE!  He has never once complained about pain, anywhere recently.  I explained to the nurse that now my daughter has heart problems, for which we will be seeing the Doctor for and she was in unbelief!  I asked her if we could just deal with the kidney issue after we sorted out the heart issue.  She said she would ask the doc and call me back.

She called back and said, "I'm sorry, the doctor feels like this is urgent and would like you to see a Urologist ASAP.  It looks like your son has sustained some damage.  He also wondered if you got the MRI done yet in Utah?"

No Utah scheduling yet...still having insurance issues I guess.  I thought those were resolved but I called the scheduler everyday last week and still never heard back.  Trying not to get impatient.

We are all getting impatient.  It's so hard to live with all these 'maybe's' and 'could bes'.  I just want answers and a plan.   I'm still having a really hard time that I have two kids with heart and lung issues.


Thursday, February 12, 2015

This is crazy...

Okay, I know you are going to think I am making this up but...Nope.  Even I am not that creative.

Today, Sam had his renal testing done.  No results yet.

While we were at the hospital, I met with some people to discuss the fungus that Shelbie supposedly has.  Just wondered if they could shed anymore light on the situation.  I just can't believe it.  It doesn't add up.  Something else has to be going on.

Shelbie has had a red eye for a few days but today, it is clearly conjunctivitis so when I finally made it home from the hospital around 4, I grabbed Shelbie and we headed in another direction to see our family doc to get her eye infection taken care of.

While we were there, I explained the fungus situation and he is going to get all the films and reports in first thing in the morning and see what they think.  In the meantime, he wanted to do a chest x-ray to see if anything showed up.

Wouldn't you know it...none of the calcification or fungus nodules showed up on the x-ray but there was a "fullness" on one side of her lung that he wasn't sure what it meant.  He will compare the CT Scan he gets tomorrow with the X-ray and compare them.  Obviously, the CT is going to be more accurate.  He said the x-ray looks like someone in heart failure, maybe cancer.  We will just have to wait and sort it out!

I just can't believe what is happening.  It's so surreal.  I feel like I am asleep and stuck in a very bad dream.

Today, I've actually been doing pretty good.  Shelbie interpreted that to mean I didn't really care about her problems.  We had a good talk.  I keep reminding the kids that someone has to be strong and since I am not currently sick or dealing with anything near to what they are...I will be the strong one for them.

After tomorrow, I hope we will be one step closer to a plan.  I know when a plan is in place, things will feel much better.


Wednesday, February 11, 2015

The Rubber Meets the Road

I struggle to find a title to this post.

Truly, the reality of life struck again.

Shelbie's pulmonology appointment was not a favorable one.  I'm not sure why I tell myself to 'brace for the worst' because when it happens, I'm not at all 'braced' to hear it!   It's such a pointless adage! shall I say this...

Shelbie's lung diffusion numbers, or the pressure in her lungs is nearly as high as Sam's.  So, we got the usual pep talk..."It's probably just a hole in her heart, nothing a little open heart surgery can't fix."
Off we go for a bubble echo study!

UGH!!! I thought Ground Hog day was last week?!!

Wait...that isn't all!!

Shelbie's lungs are spotted with a fungus.  Fungus + Impaired Immune System= Extreme seriousness! other words, this sucks!!!!!!!!  Get it?

Wait...that isn't all!!

Some of the diseased spots are calcified.  Hardened.  Correct me if I'm wrong but your lungs are suppose to be soft, supple, lubricated...not hard like bones!

I don't even know what this means.  He asked if she was born in Phoenix!  Apparently this is a fungus common in Phoenix.  The answer to that is NO, she was not born in Phoenix.  Then he said, "Well, it can also be caused from Measles."  Well, Shelbie has been immunized against measles and has never had the disease or been exposed to it!

Just speculating...I believe it's time to go to Seattle.  I imagine we will meet with a new Hematologist for Adults, Immunology, Infectious Disease (not to scare anyone, she is not contagious!!!) ((Infectious Disease because this just sealed the deal that she will probably not be eligible for a bone marrow transplant)) let's see...where was I....Cardiology...and Pulmonology!

Oh...and just for kicks and giggles, this doctor who I am still not sure how I feel about him...said, "And, your son DOES have a hole in his heart.  We need to do a transesophogeal echocardiogram.  Looks like you produced a batch of kids with holes in their hearts."   I'm assuming he meant that to be funny!  Not so much but I commend him on his efforts.

So...I guess it goes without saying that tonight has not been fun.  We've been playing Humpty Dumpty.  This is a fun little game where I call in all the King's Horses and all of his men too and we try to put my kids back together again.  Sad...

On a more positive note because really, let's silver line this just a bit for the sake of posterity or something...I realized tonight, when I was visiting with some leaders from church who stopped by, not knowing what they were walking into that we really are doing okay.  It all sounds bad, and it is.  It all sounds sad , and it is but at the end of the day, if I have left my kids with a prayer in their heart, a scripture in their head, loves, kisses and we did one nice thing for someone, then really...what a great day!

It's going to be okay.  I know that God has a plan and we will be led to the next best thing for us.  I know that to be true.  We are still human, it still hurts but this is not a trial of my Faith.  God is good.  He knows how to give good gifts.  He will lead us along.

On a lighter note still!!! You're going to love this if you're still reading... In our usual family fashion of having fun and making the most of things...Here is a picture from the doctor's office while we waited over an hour to be seen...

The kids were acting out scenes from movies.  This step stool was the perfect prop!!!  Name this movie.....

Titanic!!!  It was hilarious because all Shelbie had to do was point to the stool and say, "Sam, Titanic!" and Sam ran up there and knew exactly what to do and what she was thinking!!  So funny! I was trying to snap this picture as I heard the doctor approach the exam room door! The kids scatter back to their seats but I think he caught Sam doing a little pirouette off the stool!  Funny.  I'm glad we still find a way to laugh.  I love this picture! I love my kids.  I miss Spencer but I'm so glad he is being spared all this.  He is blessed.

Not so fast...

Well, this afternoon, we go to see about all of Shelbie's pending tests from the Pulmonologist.  I'm pretty nervous about this appointment.  I no longer trust my gut here...I thought Sam's was going to be no big deal...I have no idea what to expect with Shelbie.  I just hope whatever it is, we can handle the news!

But...just when I thought this week was just about focusing on Shelbie...I got a call late Monday night from our Cardiologist.  He got some labs back on Sam and he is concerned about his Renal numbers and the fact that he had blood in his urine, significant amounts and the wacky liver numbers. he has to have a CT Scan!  What next?  It just never ends.

I told Sam and he actually started laughing..."Oh geez...what are they going to find wrong with me now!!"  It's not funny but we are at that point when it's just become so ridiculous what we are going through that all we can do is laugh.  I feel like a rag doll being used as a chew toy for a Labrador Retriever; just being tossed around for some awesome game of fetch!  I guess as long as we get a good bounce out of it!!

Despite the ongoing drama, we had a fun night on Monday for FHE.  We went to the arcade at the movie theater and played a bunch of games.  Shelbie and Sam are incredible at these dumb games. They won nearly 3000 tickets!!!  When we had used up our allotted budget and cashed in our handful of tickets, they gave the ticket stub of all these points to family who didn't make very many.  The kids were so excited but not nearly as happy as the way my kids felt when they saw these other kids so excited!  It was a good night!  We all laughed and enjoyed each other.

When we got home, the kids played Monopoly while I watched.  I hate that game but I don't mind watching.  I actually had to correct some of Sam's homework and finish up my diaper project.
Sam and Shelbie are so good at this game, a lady watching them win asked Sam to play for her so she could get as many tickets!  She went and bought a handful of tokens and begged Sam to win for her!  Sadly, he only won 25 tickets for her!

1000 ticket!

There was no end to the fun tonight!


Tuesday, February 10, 2015

29 Gifts Day 23-29

Well, yesterday marked the last day of my 29 gifts project!  It has been another remarkable month and I am so glad I took it on again this year.  I guess you could say this is going to be an annual tradition.

I have found that as I prayerfully approached each day and what I would give, I was presented with far more ways to serve than just one.  I only recorded one but it was astounding to me how many needs I became aware of, like I could see them with my spiritual eyes and made time to accomplish each one of the needs.  There were a few days this month that serving took up nearly 6 hours of my work day but somehow, by the end of the week, I was magically caught up!   It's a testimony to me that when you put the Lord's work first, he will make sure all the other tasks get done.

So...I am really excited about the gifts from the past week.  Let's start with gift 23.
 The office that I clean at night is part of a big complex.  The office Manager is often there while I work.  We have become good friends and spend a lot of time laughing when I get done.  On this night, it was raining cats and dogs and she has to park at least a half a block away.  I took her keys and went out to get her car and pull it up to the front door so she wouldn't have to walk so far in the rain.
Gift 24- I folded laundry for a lady whose house I clean.  It was stacking up and so I spent a half hour when I was through to get it all done for her. 

 Gift 25- This was a simple gift.  I baked up 8 dozen sugar cookies and delivered them to a whole bunch of people who just needed a little treat!  Who doesn't love a good sugar cookie?
 Gift 26.  A while back, I bought three boxes of these tiny Pop Open Cards.  One box is for Hope, one for Happy and one for school lunches.  I use them whenever the kids need a little pick me up.  They are just tiny and cute.  You break the seal on the front and out pops a little message of hope and happiness.  I love this kind of thing!  So, while I waited to pick Sam up from school, I walked around putting some of these cards on people's car.  I tucked them in the door.  It was funny because the guy who owned the car beside me came out just as I got back in my car.  I pretended to look busy with my phone.  He saw the card, looked a little puzzled and popped it open.  A smile from ear to ear filled his face.  But...what was sweeter was that he was a Para for a young boy with Down's Syndrome.  He showed the young boy and he jumped up and down in excitement!  That was a great moment to see him so happy!  It's the little things!
 Gift 27.  I bought a bunch of packages of baby wipes and attached a little note on them  and placed them on changing tables around town!  This was really fun, actually more fun than I thought it would be!
 Day 28.  This was a double header gift!  I put together a little care package for my friend who flew out of the country seeking medical help.  I included a couple of books she had expressed interest in reading that I happened to own, some dark chocolate truffles, Clorox wipes to wipe down her seat on the plane and some lip balm.

The second part of this gift was really cool!  I became really good friends with the girl who was the Wish Granter for all three of my kids when they got their Make A Wish.  We try to do things together every now and then.  She is an all round awesome person!  She does so much volunteer work, it's inspiring!  She is now helping with a fundraiser for Operation Underground Railroad.  They go on rescue missions to help children who have been kidnapped and used as sex slaves.  They are doing a great work!!!  A much needed work!  She asked if I wanted to help!  YES!  I donated my time and skill to making the posters and flyers for the fundraiser coming up.  I will post the actual poster once it goes to print!   I loved getting involved in this great cause.
 Gift 29- the final gift!  What a gift it was.  I stumbled upon this idea just a few days ago actually.  I found this organization called Teeny Tears.  They make the tiniest cloth diapers for families who have had premature infants pass away.  Most of these babies are so tiny, one or two pounds only and when they die and there aren't commercial diapers to fit them.  I signed up to be a Teeny Tears seamstress!  I had no idea how much compassion I would feel for these parents who have lost a baby.  I have never lost a baby, never even experienced a miscarriage so I was really glad to be a part of this project.  Once I was approved, they emailed me the patterns and instructions.  They gave me an assignment right away!  I made 20 of these teeny diapers.  The picture right below shows two diapers, the size of a checkbook!! The families get a set of two diapers; one to put on the baby that they will be buried in and a matching one that they will keep as a keepsake.  Is that not the most touching thing?  Later this week, I will be able to deliver these diapers in person to our very own hospital!!  I'm really excited to be able to hand deliver them!

So, it's been a really great adventure.  I challenge all of you to start your own 29 Gifts campaign.  It can be as involved or simple as you want.  Your life will change...I promise you that!  If you take it on...leave me a message so I can follow in your fun!

Monday, February 9, 2015

The Struggle

Life is hard isn't it?  I mean, I am getting to the point where I'm not too sure how much more I want to deal with.  I say that as if I have a choice in the matter.

I am gearing up for a very hard week which might be okay if I hadn't of had such a hard weekend.

I am trying really hard not to work on weekends.  Funny how a show down with death changes your perspective some.  I don't answer emails, answer phone calls, return phone calls...nothing.  It doesn't always go according to plan but it is evolving.  I just really want to be more available for my kids.

So, Saturday night, Shelbie and I went to see the movie Unbroken.  Good grief...if that isn't the saddest movie that has ever been made!!  Geez!  I love a movie about the tenacity of the human spirit but this was just too much!  The way this man was treated was beyond anything I could frame it in. It just overwhelmed me.

The whole time I watched this movie, I kept thinking about myself and my kids.  I wondered if I would have the will to push through the adversity like this man did.  We have a big appointment this week with Shelbie to get her genetic results on the C1 Deficiency and her pulmonary function tests.  There is a high possibility that she has the same lung and heart problems as Sam.  In fact, I wouldn't even be surprised since she actually does have symptoms, unlike Sam.  So, as I was watching the movie, I likened what he was going through to what I might have to face.  I just became so consumed by the hurt and hardship of the world.

We left the theatre at about 10:30 and in the middle of driving home, my car simply died.  Just stopped running.  I jumped out and while I pushed it from the inside lane on main street, across an intersection and to a side street, Shelbie steered.  I just pushed with all my might and didn't notice a car coming up in the next lane, not seeing that I was trying to get my car out of the way.  I pounded on the trunk for Shelbie to stop but she had already seen it and slammed on the brakes just in time.  I was terrified of what could have been.

We got out of everyone's way and I sat in the driver's seat as Shelbie walked around to her side.  When she got in, I was crying uncontrollably.  Like I have never cried before.  I think I started going into shock.  I was shaking and couldn't breathe.  All I could say was 'Call 911'.  I have never experienced this before.  She was scared.  I was scared.

She came over and opened the door and just kept talking calmly to me and coaching me to breathe.  Finally, things turned around.  She called her dad and he and Sam came to take us home.  I felt like a freaking idiot!  I was so embarrassed.  I kept apologizing and reassuring him that I wasn't going crazy.

Shelbie and I stayed up until almost 2 am just talking and listening to a list of fears for this week. It was both nice, to connect with her yet again, so lonely.

It's just been a struggle.  Such a struggle.  No matter how hard I try to do to good things with my day, focus on others, stay busy, do all the things I'm suppose to, it just gets harder and harder.

I found out this morning that timing belt broke in my car.  $2200 to fix it.  I guess it's cheaper than a new car but seriously?!  Why?   I called three people just to talk and actually ask for some help and no one answered, no one called me back...I finally prayed again!  And again for heavenly help.

FINALLY- it came from Spencer!  Of all places!  Spencer never includes a ton of spiritual detail in his letters.  He never goes into great length and for the most part, his letters are short and sweet but I love them.   Today, he spoke words in his letter that I needed to hear and no doubt he was inspired. He's been learning and studying more about the Atonement of Jesus Christ.  Here is what he shared.

 " All the negative aspects of human existence brought about by the fall, Jesus Christ absorbed into himself. He experienced vicariously in Gethsemane all the private griefs and heartaches, all the physical pains and handicaps, all the emotional burdens and depressions of the human family. He knows the loneliness of those who don't fit it, or who aren't pretty or handsome.  He knows what its like to choose up teams and be the last one chosen. He knows the anguish of parents whose children go wrong. He knows these things personally and intimately because he lived them in the Gethsemane experience. Having personally lived a perfect life, he then chose to experience our imperfect lives.  In that infinite Gethsemane experience, in the meridian of time, the center of eternity, he lived a billion billion lifetimes of sin, pain, disease, and sorrow.
 God has no magic wand with which to simply wave bad things into non existence. The sins that he remits, he remits by making them his own and suffering them. The pain and heartache that he relieves he relieves by suffering them himself. These things can be transferred, but they cannot be simply wished away or waved away. They must be suffered. Thus, we owe him not only for our spiritual cleansing from sin, but for our physical, mental, and emotional healing as well, for he has borne these infirmities for us also.  All that the fall put wrong, the savior in his atonement puts right. It is all part of his infinite sacrifice, of his infinite gift."

Oh how I wish I was stronger.  I wish I didn't have to act so mortal.  I wish I could have more faith, be more hopeful, trusting...know my Saviour more.  I wish I didn't have to feel anger and resentment and fear.

I even wish there was a magic wand to wave this on by.

But, that isn't the plan.  The plan is to suffer, and in that suffering and growing and learning and stretching and even anguish, like I felt on Saturday night, there is a cleansing.  A healing.  It does not happen swiftly but at times, painfully slow.

So, I guess I will continue the struggle.  The good days will come and so will the bad and the hard and hopefully, through it all will come a little more understanding.


Saturday, February 7, 2015

Parable of the Underwear

This is a story about hope, the will to live and underwear.

Last week, after we left the Psychiatrist's office and very difficult, heart wrenching conversation we had with him, I felt so disheartened; deflated.  I really felt like my hope was dwindling.  It felt as close to the end of Sam's life as I'm sure it could have felt.  Not only was I struggling with the sting of being slapped with the truth of reality and DC, but Sam was struggling twice as bad.

We sat in the car for several minutes, both of us just staring ahead like we had just been caught in a tangled web of deceit.  Really, we had all but convinced ourselves that life altering diseases and problems like this happen to other people, not us.

As the mom, I knew what had just been squarely placed on my shoulders to bear.  I had the daunting task of restoring order to the day.  Finding a secure place to stand, something to steady us.

They say that every action has an equal and opposite reaction.  So, it stood to reason in my head, that we needed to do to something hopeful that was at least equal in weightiness to the hopeless conversation we had just endured.  My mind was racing through the archives of hopeful things we had done in the past or things to diffuse the fear and worry...

Smashing plates...
Silly String Fights...
Massive Cheeseburgers...
Visiting someone worse off than us...
Egg tossing

None of those seemed like a good fit.  We were pretty somber.  Then it hit me...

Sam has been telling me for at least 4 months that he needed more compression shorts.  He wears them as underwear.  I kept saying no because Christmas was coming.  Then, I forgot to get them for Christmas.  They are expensive so I was really being creative in my putting him off.   In my head, I thought...nothing says 'we are not dying today!' more than new underwear!  It's a sign that you are going to need them because your life will go on!

After an awesome cheeseburger and greasy fries from 5 Guys to fill the cracks of our pun intended, we hit the mall.  I went straight to the best underwear store I could find and told Sam to pick out a few pair.  He looked at me strange..."Why?"

"Because you need them.  You've been asking me for them so we're getting them."
"But they are too much money.  I'm not going to need them"
"Yes, Sam!! You are going to need them!"

That underwear was a symbol of life.  It really was the weirdest thing that has happened to me in a long time.  The feeling was so strong that underwear = life.  I know, it sounds totally half baked!

To me, those underwear are a little message from God that Sam isn't done yet.  I don't expect anyone else to get it but it was a moment I don't want to forget.

I was sharing this with my book club friends a few days ago and one of my friend's said, "That is so funny!"  She went on to share her own underwear experience.  Her husband has been through some serious health issues with his heart and kidneys.  He's been on dialysis for I don't know how long!  When we was really, really sick...she knew he needed underwear but she didn't go buy any because she really didn't think he was going to live.  That was a few years ago...he's still here!

See...proof right there that underwear=life.  Funny how such random things hold such meaning to one facing difficult trials.


Friday, February 6, 2015

PTSD? ....Nah...

Post Traumatic Stress Disorder...Who has that?  Me?  Nah....

Well, maybe.

Maybe a bit.

Today has been an okay day, really busy but there were some odd moments when some serious anxiety and emotion broke through my activities of distraction.  I was completely caught off guard by it.

Worse than that.  I was merrily drafting away at my computer when the phone rang.  I looked at the screen and it was the High School!

The normal, un-traumatized me would have said to myself,  "Hmmm, I wonder what they want?" Then answered the call and wait patiently to hear the person on the other end.  Often, the school will call with random recorded announcements about early out, tardies whatever.

Instead, the traumatized me immediately started shaking and the first thought in my little overworked mind was, "Oh my gosh...Sam died.  He collapsed.  Had a massive heart attack...and a stroke!" I answered the phone with what must have been a shaky voice because the teacher on the other end asked if I was alright.

Sam was alright.  The special ed teacher was just calling to set up another meeting for Sam's IEP review.  Seriously, I couldn't catch my breath yet I was trying so hard to sound normal.   He also asked if Sam was okay.  I wasn't sure exactly what he in what way?

I told him I thought he was okay, referring to his emotional state but he said another teacher had reported that Sam didn't look very good and didn't seem to be doing very well.  There was only an hour and a half left of school so I didn't want to be dramatic and drive down there to get him so I tried to just attend to my work.

Sam did look so tired when I picked him up after school and he wasn't his chipper self.  I asked him if he was alright and he gave his usual standard answer...I'm just tired.

I bet he is...sigh......

I talked to the U of U Medical Center today and they have about got the insurance issues resolved.  They will review the case on Monday and call me if they approved it.  She said if everything goes as planned, we should be able to get there mid week for the testing!  Crossing my fingers...sort a haphazard kind of way!  Mixed Feelings...Oh how I love denial!


Thursday, February 5, 2015

The Highs and Lows of life

Yesterday was such a good day even though I had to hassle with hospitals and insurance companies and learn that we will continue to wait and wait to get Sam's final heart test done.

I called my Wasband to let him know it isn't going to happen anytime soon and he was pretty frustrated.  He wanted me to call around to other hospitals and find somewhere else we can take him.  I'm not doing that.  I have always tried to let my kids rest in the hands of the Lord, at least in the past 10 years or so.  In the past 10 years, I have watched two of my kids come very close to dying and those experiences taught me a lot.  They changed me in many ways, ways my Wasband didn't recognize.

Whether we get the test done today or in three weeks, the truth his God's plan is underway and I truly believe that we will all live out our numbered days here on earth.  I'm trying to patient in His plan but also in His timing.  I'm trying to understand why Medicaid is a good thing for us when now, it's holding up some very important tests.  But...timing, patience, it's all part of the package we signed up for.

So...what made yesterday a good day?

Well, for the first time since Thanksgiving...I had someone join me in my dark hole of this adversity.

I have been totally isolated in the sense that only one person has called to see how we are doing, or ask about Sam...last most people knew, he was having surgery to fix a hole in his heart between Christmas and New Years and he had a mini stroke the night before Christmas Eve.  I can't help but people think he had surgery or what?  It seems so completely odd to me.  

Now we are facing the beginning of the way this story ends and honestly, I didn't realize how hard it would be.  I thought it would be different.  I thought I would be surrounded by friends.  I thought I would never have to face such a hard thing entirely alone.

Yesterday, I went to see my friend 'C'  She has been bed ridden for over 6 months!  She has three beautiful girls and a caring, loving husband.  The doctor's have all but given up on her situation and have not provided her with any hope of recovering from whatever has crippled her body.  She is getting ready to leave for some special treatment outside of the country and I wanted to say goodbye.
I wish I could spend every single day with her, waiting on her.  I know it would make me so happy but I have this little thing in my life called DC and a full time job or two so that is impossible but not a day goes by I don't think of her.

I went to see her with the idea that I would cheer her up, help her feel peace about her long journey ahead but as is usually the case, I left there being lifted myself.  Though we are going through totally different things, spiritually and emotionally, there isn't much difference.  We talked and connected on such an important level.  It made all the difference in the rest of my day.  I am so glad that God put her in my life even though I can't see her as much as I would like.  Our friendship is not of the traditional kind.  We don't get together at all, but we know each other better than most besties probably.

Later in the afternoon, I got a beautiful email from one of Sam's teachers.  She told me how grateful she felt to be his teacher and she has seen him work hard for her and set goals and she was really proud of him.  She was even impressed that Sam was laughing and joking with her yesterday.

It takes such a small effort to feel a huge return of the Savior's love.  I realized that help doesn't always come from the people you 'count' on every day.  I have prayed continually for someone to help me get through this, someone to understand, someone willing to witness how hard this is and it comes on days like this...out of the blue, from such unexpected sources.  I have also been blessed by the strangers who leave such kind comments on my blog.  Someday, I would like to meet them and let them know that their thoughtfulness was not just nice, but life saving.


Wednesday, February 4, 2015


I've had to laugh...not really, figuratively, at the course the past three months have taken.  It's amazing to me just how resilient, yet fragile a spirit is.  Let's take a look back shall we?

November, Sam gets a good report from the physical exam at Pulmonology.  The doctor said, "Well, you are basically a picture of health, I'm sure we won't find any surprises on the pulmonary function testing."

The testing happens and a week later, pneumonia strikes for three weeks.  I don't worry too much because Sam has never had lung or breathing issues.

The week following his recovery, we discover that Sam does indeed have a serious lung diffusion problem to the tune of a 200% + increase in lung pressure!  Serious but it's probably just a hole in his heart...we'll fix it!

I was devastated...but then accepted that fact.

So, starts the journey with God.  It was made clear to me that if it wasn't a hole then it was far more serious.  I prayed and prayed and prayed for hole in my son's heart!  If you don't think that sounds foolish to ASK God for there to be a hole in your kid's heart!  To beg and plead for a hole!  Time passed, too much time but then it became evident that there was not a hole in Sam's heart.

Why can't there be a hole?  I had come to accept that!  To be okay with that. A hole...looking back, why did that possibility ever scare me?

Then, we find out that there is increased pressure in the right chamber and valve problems with at least two valves but theoretically, the aortic valve as well, since insufficiency showed up there too.

So, I go back to God...okay, I can deal with the fact that there probably isn't a hole but this can fixed right?  Just tell me this can be fixed.

Then we find out the problem is either bad plumbing that is dumping oxygenated blood into the wrong side of the heart or his heart is just plain and simple; dying due to disease and fibrosis.  Man, that supposed hole was really nothing to get my panties in a knot over...was it?

What I wouldn't give for a hole!
What I wouldn't give for some bad valves.
What I wouldn't give for some congenital plumbing issues!  

Funny how God eases us in to the problems...line upon line until we get to the place where we can cope but only because he started us out with smaller possibilities and we survived the thought of the smaller possibility so with the stretched and made stronger faith, it got a little worse, a little worse...til...

Well, that part of the story is yet to be written I guess.

There was a day back in December that I didn't think I could inhale one more particle of hurt over these lung and heart issues...but here I am, here WE are not only still breathing but accepting the uncertainty and moving on each day.  Albeit a little bruised and still exhausted but we are moving, progressing even, in our faith and our trust in God.  It's not easy and it's not fun but we are doing it.

Today, I called our Cardiologist because I still haven't gotten news on the time for the cardiac MRI in Utah.  The nurse was very apologetic because she faxed the orders and then forgot all about us.  She gave me the number to U of U so I could get it scheduled.

I did that this afternoon and low and behold...they won't accept Medicaid!  Ahh...I'm trying really hard to keep my perspective.  When the nurse on the other end apologized and told me it could take two more weeks to figure out the insurance issues and get approval, all I could say was, "It's okay, what's another two or three weeks to sort this out when your son could literally drop dead at any moment?" I did make it clear that I wasn't blaming her and she was very understanding and admitted that it is pretty ridiculous because it is a test that is kind of that last diagnostic test when things aren't looking so good.  Why do I have to be reminded of this?  In the end, I thanked her anyways for allowing me to live in my blissful state of denial for two more weeks.   We laughed awkwardly together until she said,  "Ahh...Well, you're welcome...I guess!"

(And another thing...while I'm on a rant...They didn't even have accurate insurance information to begin with!  A brand new doctor this year, brand new insurance, they send the insurance information to a brand new hospital we've never been to in a different State and they get the wrong information on insurance!  It wasn't even my old insurance...just plain wrong!  Tell me, what was the point to filling out 8 pages of personal information including insurance info, and a copy of the insurance card if you just make up your own crap about us?  Okay...rant done.)

So, ya...the conversation sounded sort of mean and maybe sarcastic...okay, really sarcastic but seriously...I think when dealing with issues of the HEART, waiting weeks and months for testing and surgery should be frowned upon but what do I know?

I'm just the single mom, working 50 hours a week as a designer and house cleaner, another 175 hours a week as a mom, 67.25 hours a week as a therapist so my kids don't go off the deep end and then another 47 hours trying to make three square meals a day, do 11th grade homework, clean my own house, pretend like I care, act like I'm happy, put aside my cares, keep my chin up, set the tone, and hang in there!
There just aren't enough hours in the day to fit this magnitude of worry in. we sit and wait and look back in awe of how far we've come even though we have so much farther to go.


Monday, February 2, 2015

29 Gifts Day 18-22

I had someone ask me this week  if this project has been energizing this year or just another thing to get done.  It hasn't been as energizing as last year.  Last year, we didn't have quite so many hard things going on.  However, it hasn't been just another thing either.

It's been something I have to do for my own sanity.  It's something that when I do it, I feel better.  It buys me a little peace for a few hours, more than I would have normally had.  It's always a good thing to get out of your own head and problems and focus on something meaningful.  I actually had way bigger things planned for this year's challenge, but my energy is low, time is spent and I knew I realistically couldn't pull off the things I had planned.  It think it's worked out great all the same.

So, Day 18...
      I had heard through the grapevine, about a young girl whose parent's were going through a divorce and she was struggling.  The family, from what little I knew, didn't have much and the girl was in need of clothes.  I didn't ask for anymore detail than that and got to work.  I went to my closet to gather some gently used items that would fit her and bought her some new shirts and a hoodie, then packaged them all up in a cute little backpack she could use for school.  I really enjoyed this gift.  It didn't cost much at all because I bought most of it from clearance racks and coupons I added to the already inexpensive price.  I'm a pro at finding name brand clothes for $4!  So, it was fun in more ways than one.  I gave the gift to the individual who first approached me and they will be sure she gets it.  I will never know her, and she will never know me...that makes it really cool!

 Day 19

    I received a call from a contractor asking me if I could design a bathroom for a man who had MS but recently had a large tumor removed.  The surgery left him a paraplegic.  He can't come home from the hospital/rehab until his house is accessible.  So, the contractor is busy building ramps, widening doors, changing the flooring etc.  He gave me dimensions and I drew a few ideas.  It became necessary for me to go look at the space.  While  I was there, I met this man's wife.  They are an older couple.  I took some other measurements, visited with her about some of her concerns, offered some advice and tips on caring for a disabled person, transferring methods etc.  I've done some care for disabled people, mostly end of life care but I am also certified in Aging in Place and Healthcare Design is my area of expertise.

It didn't take long for the Spirit to nudge me and I told her that I would offer my design services, drafting etc at no charge anything she needs, even down the road.  It did my heart good to see her cry in joy!  (not to see her cry but you know what I mean.) They had been planning a mission together when their life took a detour.  I am so excited for the plan I came up with!  Any able bodied person would love the new shower and, they will both be able to enjoy it!  It's 8' long and 5' wide with a bench that spans one end.  He will be able to roll right on in and spin around and be self sufficient!  She won't have to worry about cleaning shower doors since it's a walk in shower!  It's going to be awesome!  Probably the most exciting thing I've done in months!
 Day 20

     Have you heard of The Pencil Project?  Me neither until I was looking for something fun to do and then I stumbled upon it.  It's usually groups that donate hundreds, even thousands of pencils to this non profit organization that helps kids with much needed school supplies.   I am only one person but I was able to donate 100 pencils!
 Day 21
       It's often through strangers that a prayer is answered.  Today, I wrote some long overdue thank you notes to near strangers who acted upon a prompting to talk to me.  I don't even really know these people but I know how to get back in touch with them.  It was simple but meant a lot to me.
 Day 22

      This was today's gift!  I had to take Shelbie in to the mall tonight and so I took with me over a dozen of these little flower sunshine bendables.  As we walked through the mall, I handed them out to little kids I saw.  It was pretty cool that a couple of the girls had visible disabilities and their little faces just lit up in pure happiness when I gave them a little sunshine!!  That's exactly what I needed today!  One little girl got so excited...she told me she had a blue one but it broke and would be so happy to have an orange one!  Sweet!

     In one store, the male clerk asked why I was carrying all these and I told him I was going to give them out to people who needed a little sunshine in their life.  Then I said, "Do you need a little sunshine?"

"Actually, ya, I do!"

So, I gave him one...even 30 something men appreciate a little thoughtfulness from a stranger.


Sunday, February 1, 2015

That space

Here we are that space of calm.  That space between the last storm and the next one you can see gathering on the near horizon.

I am glad we had the hard talk with Sam and Shelbie on Thursday.  While it's hard to face uncertainty, talking it out gets you much farther than being stuck, alone in your own head.  Sam has been making jokes about his situation, taunting me with acts of clutching his heart and falling to the floor.  Not funny really, but choosing to joke about it is at least a sign that he is thinking and sharing something, in some way, even though I would much prefer he use words than sarcasm and not so funny joking around. It's progress, believe me.

I was able to meet with the school counselor on Friday morning.  Sam had decided in our talk that his preference is not to be put on homebound school until we get all this testing done and a plan in place.  He would like to go to school when he can.  As for the missing 5 weeks of school and homework since Thanksgiving, we talked about reducing the work that is pending.

The counselor was so great as we talked about the things we are facing.  He was willing to talk to Sam's teachers for me and request a lighter workload for Sam until he is in a better place to cope.  He agreed with Sam's plan to try to stay in school instead of going on homebound.  He left for a few minutes to talk to administrators and the special ed teacher just to make sure everyone was willing to work this plan.

When he returned, he said, "I've got a great plan for Sam!  As long as we see him doing the very best he can, we will put him on a pass/fail system of grading."

I was so relieved!  That was much more than I was expecting but totally appreciate it.  Part of me feels bad that we are asking for special treatment but then the words of the Psychiatrist came back to my mind...we aren't normal.  We don't get to be normal anymore.

So, for now, things are relatively calm.  Last night was hard.  The kids are so restless!!  So restless with life.  They want to run away, move, go on a long vacation all in the effort to be happy.

Shelbie and I had a rough day on Saturday.  I just wanted to have a fun day and she was upset with a variety of things and just wanted to go home and sleep.   So, we went home and she took a long nap.  Her dad came by with Sam so he could pick up some clothes he needed and they invited Shelbie to a movie and dinner...something I was hoping to do with her.  She immediately perked up, happy again and gladly left with them.  I was left feeling pretty rejected.

It was a long night!

When Shelbie got home late, I asked her what I could do to help her.  I feel like home has become this suffocating place where bad things happen.  She agreed.  She thinks our house is depressing and closing in on her and boring...let's not forget boring!  I work all the time and never do anything fun.  Yep, that's about right...A single mother trying to juggle an obscene amount of emotional and physical stress.  She wants to move badly!  In the worst way!  The problem is, moving isn't going to magically make her happy.  She thinks we have too much stuff, clutter that is adding to her emotional load.

It was just frustrating.  I was frustrated but not at her; I kind of feel the same way.  So, at midnight, I went on a cleaning spree in my room.  I filled up two garbage bags of crap to throw out and two more garbage bags of stuff to give away.  Just stuff I don't care about.  Sounds like I'm a real messy person.  I'm not and I don't feel like a pack rat either.  In reality, we don't have much but today, we have even less of unimportant things.

Life is complicated.  If it isn't the one major health problem for the day, then it's all these little satellite issues that create just as much chaos and difficulty but it all comes from the same source welling up around us...uncertainty.  WE are all on this quest to find meaning and stability in a very unstable situation.



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