Tuesday, March 28, 2017

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.  Their story was so moving to me, mostly because my best friend in the world died from CF.  I have always had a special place in my heart for the CF'ers.  This family has no idea, but one year, we sent our Santa to their house with sacks and sacks of toys.  On this rare occasion, the front blinds were open and we got to see this little family of trials fill their hearts with hope and love.  It is probably one of my fondest memories.  But this man, knows nothing of me.   It's a strange thing to know so much about a total stranger and in a quiet sort of way, witness their journey.  That young man whose lungs are filled with disease was a champ as he worked those lungs to their fullest capacity.  I stood in awe at how he defied the odds.

As I was winding down and ready to leave, an older couple walked in.  I thought nothing of it until I realized I knew them.  They use to be in our Ward a few months ago until our boundaries were rearranged.  Her husband use to be a normal 77 year old man full of personality and cheer.  One day, he passed out  at the gym and that was the end of that man as we all knew him.  Now, his head is bent down, he has no verbal capacity and walks like he's 100 years old.  It was strikingly sad to see but there was his wife, my friend, was dutifully, determined to give him some exercise.  A hope that if he could regain some strength, his situation would improve.

I helped her get him into one of the machines and while she helped him lift the weighted bar, we talked.  I asked her how she was managing and with a positive tone mentioned all the numerous family members close by, neighbors who visited often and helped when she needed to run errands. From her own account, she was lacking nothing and seemed to be adjusting and managing.

I said, "Well, I admire you because I know that even with all the help and support in the world, it's still hard to be a caregiver and watch the person you love deteriorate."

Her eyes filled with tears and a wave of sadness settled on her face that was all too familiar to me.  I gave her a hug and let her gather her emotions while I cheered Brother K. on.  He looked up at me with the biggest and brightest smile, the one he use to give me every Sunday when he shook my hand and said how great it was to see me.  It was a tender moment to connect with him on a level I have never done before and to know without anymore words, what she was feeling in that moment too.

There is a great reverence, I think, in being a witness for someone.  To share in their story and feel after their deep emotions and sit with that.  No words.  Just sit in the overwhelming moment with them.  It's an amazing experience.  I count these experiences as tender mercies because it reminds me that the world is not all bad.  There are still deep wells of love.






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Monday, March 27, 2017

Time and Money

I think I quit my job tonight.  I have not been feeling well all weekend and at work tonight, I was talking to the HR person and they have been having a hard time finding a person for the new clinic 20 minutes away but a few options for their clinic here in town.  I kind of just said, "They can have this job." It was my sleepy brain talking. I wasn't even shocked when I heard myself say that.  I just really don't care.

As the conversation went on, I suggested that maybe I would take the smaller clinic 20 minutes away. I think for so long, I've been trying to find a way to quit that job.  It is part of why I feel horrible all the time but I have had a hard time justifying the loss of half my income.  The smaller clinic only has one bathroom as opposed to 9 bathrooms.  It would be easier for me to manage with my declining health but a huge pay cut!  A huge pay cut but with commuting would take me the same amount of time, if not more each night.

Sometimes in life, it comes down to deciding where to cut your losses.  In this situation, it comes down to stress and money.  The current job is 4000 sq. feet of stress...every night!   The new location would be 1200 sq. feet of not so much stress.

I have two days to give my official notice.  It will be two days of crunching numbers to see how realistic it will be.  I really need to let some stress go...Man, I hate hard decisions.


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Thursday, March 23, 2017

Genetics

Today I had a 90 minute conference call with the genetics counselor at NIH.  It was an enlightening conversation.  I was pretty nervous all morning in anticipation of the call.  I wasn't sure what to expect.  I wasn't sure if they were going to give me results from the Exome sequencing and on top of that, my mind was blank.  I couldn't come up with one single question to ask.  It was making me anxious.  It's not everyday you get the undivided attention of a world renown research center.

Just prior to her call, she sent me a power point presentation on genetics.  I had a minute to scan the 60 slides in the presentation.  Thankfully, this was just enough to get my brain into medical mode and my mind was flooded with questions.  Hard questions that I didn't want the answers to.

I've never been able to feel settled that they haven't been able to find the DC gene in Shelbie.  I have been told all along that maybe she has a mutated X chromosome that is driving some of the symptoms we see in her that follow the clinical picture of DC.  Today, it's clear that that theory is not likely.  The team at NIH is fairly convinced that my  kids have two rare genetic diseases.

I sent them all of the kids' records from the past year and a half.  They have read through them all and met to discuss what is happening.  In my meeting today, the brain problems that have manifested in Shelbie and Sam are similar and not part of the clinical picture of DC as they know it.  Now..there is a chance that there are genetic mutations that have not yet been identified in the DC family that involve more brain issues.  Where science is right now...it doesn't appear to be a DC problem.  So, that means something else is going on.  It can't just be a stroke of bad luck that two of my kids have the same brain issues.  If one had it, then they would just assume that was a fluke but that isn't the case.  And...we haven't even started looking into Spencer's neurological issues and he has more than the other two put together.

There are a lot of unanswered questions in the genetic testing that was done in Seattle.  Sometimes, when researchers find a mutation that explains the clinical picture, they stop looking or things can be missed.  This is the reason that NIH is doing their own exome studies.

So much information was gained from this meeting.  I was glad that we had it.  They have not yet completed their Exome studies but she did let me know that they are working on it.  It's the interpretation that takes a long time.  Especially for us, she said that they will be looking very closely at the clinical picture as well as the scientific picture to help them piece information together.

I don't feel any better but I don't feel any worse.  It was a benign day I guess which isn't bad.




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Tuesday, March 21, 2017

Yet, they were diligent

Today has been a rough day in my world of Shwachman Diamond Friends.  I've never experienced such a tight knit group.  I think we feel deeply, the sorrow of others in the group going through difficult things.  One sweet family just got their son home from not one, but two bone marrow transplants.  The second one was successful but only to a point.  They found out today that the 'clone' cells in his marrow are back and he is not a candidate for a third transplant.  I'm not sure what the plan will be for them.  I think they are still trying to figure out what comes next.

It was heartbreaking news.  It made for a hard day.  I met tonight with my Bishopric.  I was reminded about the principle of Grace.  When I came home, I pondered more on the phrase, 'Grace shall be as your day.'  It gave me peace and I hope that in the current blows my friend has sustained today, she will too will feel God's grace; light that fills her day.  I made this tonight...maybe I will send it to her.



I did hear back from NIH finally and we have a conference call scheduled for Thursday.  I'm not sure who all will be involved in this meeting but I know for sure the genetic counselor will be on the line. My expectations for this meeting are low, mostly because it's hard to work yourself up for good, solid answers, only to be let down again.  The best case scenario is that I will come away with a better understanding of genetics and what we can expect by way of help from the NIH.   I know that each researcher on the bone marrow failure team/DC team has reviewed Shelbie and Sam's latest test results.  These brain results are very intriguing because both kids have very similar brain abnormalities which strengthens the argument that we are dealing with a secondary genetic disease. I suspect that Spencer will fall into line with the other two, we just haven't dared look.  We've been so overwhelmed with his heart issues but we need to.  His tremor is getting worse and some other neurological issues are telling.

If nothing else, I am looking forward to the education and to get some of my questions answered. Maybe they will report on our total Exome testing and maybe, they will be able to tell me if I am a carrier of DC or if I have the disease!  I'm still not sure I want to know.




I titled this post...'Yet they were diligent' because I read that phrase today in my scripture reading and it made me think of my kids.  The words were in terms of people who wandered around in the wilderness and though they were lost, they never lost hope.

Late this afternoon, Spencer was busy going up and down from his room to the basement.  I didn't pay much attention to what he was doing but when I went down to make dinner, I ventured to the basement to see what was going on.  He had turned a corner of the storage room into an office for himself.  It's pretty rough but he couldn't be happier! He got some flyers distributed to businesses this week and made some hopeful connections with a new company in town.

Half the time we are lost in our own little wilderness but somehow, they remain diligent in moving forward, planning ahead, hoping a little more.  They inspire me more than they know.

Just some good reminders for the rest of whatever this week holds.


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Monday, March 20, 2017

I'd Wanna Be Me Too!

There's a popular song on the radio and the chorus says, "If I were you, I'd wanna be me too!"

I kind of laugh every time I hear that song because no one ever says they wish they were me.  People have started using my name in derogatory ways.  Seriously!  I have lost track of how many people have said to me..."Gosh, I've been pulling a KATHY."

At first I was a little puzzled by that sentence...what does that mean exactly? They went on to explain that everything in their life was going wrong just like it always is in my life. I'm thinking if you looked up my name in the Urban Dictionary, it would read something like this...

Kathy- (Ka-thee) when nothing goes right.  Everything goes wrong.
          "It's a Kathy kind of day."  "I feel like Kathy."  "What a Kathy kind of week!"

I even had a doctor comment that her life felt like mine!  Her mom got really sick, her father in law died, her sister went into liver failure all in the space of a couple of months.  When she was telling me her story, she said, "I was seriously living a Kathy kind of life!  It sucked!"  Ha ha...It kind of makes me laugh.

But...not all is lost!  I actually had one of my clients I clean for tell me she was so jealous of me!!  I almost collapsed on her kitchen floor.

"What in the world?  Why would you be jealous of me?  Is it my girlish figure?  My purple car with the paint chipping off the bumper?  The fact I get to clean toilets all day?  What do I have to make you envious of?"

She laughed then said, "You don't have any kids in public school!  You don't have to buy school supplies!  Deal with cranky teachers!"

Ha ha, yes, it's true!  Life is good now that public school is done and over with.  I still find myself breathing a little easier knowing geometry is a thing of the past! Two more weeks and Sam will have one semester of college under his belt!  Really proud of him.  It hasn't been easy.  He is trying to figure out if he is going to register for the second semester.  Stay tuned.



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Sunday, March 19, 2017

Stories that connect us

At the end of the aisle, sat a man on a scooter, waiting patiently while his wife sorted through the skeins of yarn.  He looked vaguely familiar and so did she but I was in a hurry find some fabric and leave.  I could feel him staring at me so I looked over and he smiled.

"Do you remember me?" He asked.  He looked vaguely familiar but wasted no time in telling me all about the accident he almost died in last year which was the reason for the scooter.  It didn't take long for me to fall into his story.  After 15 or 20 minutes, I still couldn't really place him but I felt like I had always known him.  A strange connection.   When we were through visiting, I said goodbye and overheard him tell his wife that it had been a long time since he was able to visit with me.  

There is no real reason for that story but it was a great reminder that we are all connected in the stories we tell.

It has been a quiet weekend and the kids were all in a pretty good place and actually got out to be with friends and do the things they love.  The weather was pretty good too I think...I didn't get out, obviously.

Funny story.  On Friday night, I was so tired I was dizzy.  It was only about 10 pm and I couldn't stay awake one more second.  My Lupus has been in overdrive and I keep meaning to get to the doctor for an injection but haven't had time, so I took a muscle relaxer, some anti inflammatory pills and a sleeping pill. I was out!  I slept through Shelbie and Spencer coming home and trying to wake me up to tell me about their evening and I slept until 8:00am on Saturday.  I even slept longer than the kids and they were a little disturbed by that.

Sam came home early to grab some things he needed for his little road trip to Utah and came in my room where I was just waking up and said, "MOM!  What's wrong? Why are you just laying there?  Are you sick?"  I had to laugh.  I have never slept longer than my kids... I have always gotten up way before them and have been showered and dressed before I would wake them up for school so it is strange for them to see me in bed.  

Anyways, the sleep was great!  Saturday, not so great but I'm not complaining. Tonight, I am scrambling to get my taxes done.  I have an aversion to taxes.  It never ends well for me and the IRS scares me.  I think that's why I leave it to the very last minute even though every year, I vow I will keep up on things weekly.  I love broken promises!  Here's my table tonight...entering a year's worth of information into Quick books!  I know what you're thinking...I didn't realize there was a skull on the table while I was working until I took this picture.  I figure that's an appropriate mascot to have while doing taxes.  You know what they say...death and taxes.


I meant to post this picture a few weeks ago.  The kids' little sister was able to come over to see them.  She loves Spencer's van and loves being with her brothers and sister.  So, I had this idea to park his van in the garage and take the projector out to watch her Strawberry Shortcake movie in his van. I hooked up a little space heater and had some treats.  It was kind of fun.  My kids love her to death! She is so sweet.


That's our weekend review.  This week, I'm still waiting for the docs from NIH to call and I have penned a frustrated email to our Utah team which I am trying to determine if I should send it or not.  I understand they need time to make a plan...but seriously.
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Friday, March 17, 2017

Big Talk

Several months ago, I watched this girl give a TED talk.  It was fascinating so I found her video on YouTube.  Take a look.



I found it so interesting what people said they wanted to do before they died.  Have you thought about that before?  I'm not even sure what I want to do tomorrow!

But the bigger question than that was "What would you do if you found out you were going to die tomorrow?"  All of sudden, the list of places to go was replaced by people to be with.  The one guy who wanted to make peace with his dad...how many of us put off important things that we could do right now?  Everything comes down to the people we love and surround ourselves with.

I love the idea of Big Talk.  I love how stories connect us.  I love to read stories from people I know and stories from strangers.  I especially love hearing stories and thoughts from my kids.  Sam and I have had some interesting Big Talks lately.  I snatch little bits of time when he isn't expecting it and ask him the deep questions about life.   He recently broke up with his girlfriend.  He has to decide if he is going to sign up for another semester at school or work or change schools or go on a mission.  His thought process through this maze of decisions is fascinating to me.  I love being connected in this way.

Shelbie had a really bad experience with a young man this week.  A young man who pretended to be a nice, caring guy but was actually anything but that...sometimes, its in the bad experiences where I can make  the biggest connections with my kids.

Today, I had to spend most of the day picking up furniture pieces and moving them to a nearby town.  Spencer came along to offer up his muscles and drive the moving van.  We had so much time to talk about all his great and wonderful dreams.

I realized that sometimes, it's easy to forget that there a bigger things in life than shallow pond of social media we wade through daily.  Somehow, that has replaced the deep waters of a life with meaning.

So, here's to more Big Talk.  More stories.  




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Wednesday, March 15, 2017

Remembering the past

I spend a great deal of every day trying to figure out what to write here.  It feels so redundant, another verse to the same song. At least that is what I have been telling myself.  Its true.  One truth at least but there's another truth...it is exhausting to put words to what is happening and what I'm feeling.  And quite frankly, living it once is bad enough, reliving it in words is painful.

The entire year of 2007 is missing from my blog, the year Shelbie went through chemotherapy treatment for 9 months.  It was a year that devastated me. I wanted no memory or trace of such overwhelming sadness, fear and difficulty.

There have been other moments when words were simply paralyzed at the awe of my life.  When my kids were clinically diagnosed with Shwachman Diamond Syndrome in 2000.  For a couple of years after the prognosis, I foundered.  I broke.  It all became too much and through a series of unfortunate experiences, found myself, committed to a mental hospital.  I was there completely alone, and as I sat in an empty room with just a metal table bolted to the floor and one way mirrors with faces I couldn't see adorning the walls, a psychiatrist asked me a bunch of questions to determine just how crazy I was.  His questions were simple and without much emotion, I answered them.  But I will never forget one question he asked,

"Are you grieving the loss of anyone?"
I looked at him intently, even pressing the pain written on my face into his eyes and quietly said, "Yes"
"Someone recently died?"  He asked.  "Who?"
"Me." and tears finally poured from my eyes.  "I have lost me."

I remember his eyes filled with tears.  He slowly and thoughtfully closed my file folder, whispered, "I'm sorry" and left the room. No more questions.  There was nothing left to say.  In one sentence my whole soul had been stripped away.  I arrived with just the clothes on my back and within minutes those were stripped away too. Everything in that moment had been taken from me, all the work I had put into fooling myself, and the world that I was okay, was gone.

It was a terrifying, shameful, bitter, vulnerable, embarrassing and humbling experience to live for nearly three weeks with the most severe of the mentally ill.  I think it was there, I learned that life is hard and life takes a toll, and life has a way of changing you into something you don't even recognize, something the world can not accept; will not accept.  It isn't a choice.  It happens.  It happened to me. It happened to the only friends in the world I had...the others in that place who found themselves on the fringes of sanity.

I have lived through so many dark and difficult times.  It's hard to write on a blog when your own life has become so huge and overwhelming.  It's hard to write in an honest way that life is just hard.  It's taking a toll.  Everyday takes more effort than I have ever had to exert in life.  People mistakenly think that the more commonplace these health problems become, the more use to it we must be.  That is not true. The more we go through, the harder it is to cope.

I see the fatigue in my kids.  I see their worry.  I see their grief in losing themselves, what they thought they would be.  I see the loss; the continual blows.

The world sees well adjusted kids, a mom who holds them all together with a fleet of King's men and King's horses, a family who rolls with the punches, laughs in the face of adversity.  We are all that...a lot of the time but not at this time.  Right now, we are lost and tired and struggling and as hard as that is for me to admit, it's probably the most honest thing I've said in awhile.

I don't want 2017 to be lost from the blog the way 2007 was but suffice it to say, I'm way out of my comfort zone in writing about such hard things.  And, while I am in slightly better shape than I was during my stint at the mental institution, I feel many of the same things, just lost. Vulnerable.  Terrified. Embarrassed.  Humbled.  Because in all the mix of sadness, there are many things to be glad and grateful for too.
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Sunday, March 12, 2017

Family Time


We finally had a halfway decent night, at least for a couple of hours.  Sheesh, the days drag on and it's one hard day after another.   Shelbie continues to be sick.  This week her blood pressure has been crazy low...87/41.  I didn't even think a person could still be alive with a blood pressure that low.   Another week on antibiotics and there is no improvement.  Spencer had a metabolic crisis on Tuesday morning.  I had just walked in from a morning appointment he could hardly keep himself upright.  He had been at the gym working on a new weight routine and nearly passed out.  He came straight home.  you know its serious when HE knows he can't go on.  

It was a bit scary...like watching scaffolding crumble.  He was really struggling.  I ran to the gas station to get him some Gatorade Recovery and filled him up with sugar and starch. I knew if I took him to the hospital they would hydrate him and run a couple of bags of D5 and Sodium so I did a makeshift thing which I realize wasn't nearly as effective.  It took until the evening before he had any strength back.  Wednesday, he was doubled over much of the day with chest pain.   So, those two took a beating this week.

Early this evening, when everyone was laying around the living room grouchy, I announced that we weren't going to be grouchy anymore.  As if that would turn this ship around...but actually it worked.  Well, it worked after a smallish argument and meltdown.  After that, it was almost a perfect night. I made their favorite cookies, popped some popcorn and then we all curled up in blankets and watched the first two episodes of Planet Earth II.  No phones, no work, no worries...just relaxing and being content with one another.  You don't realize how healing it is to be with each other, doing something other than visiting doctors and work, until you go months without it.

This week, I'm hoping for the conference call with NIH geneticists.  As I understand it, they are close to completing their assessment of our Exome sequencing.  I'm bugged at the slow pace of our doctors in coming up with solutions for my kids. I want someone to explain what, if anything we need to do about the soft mass in Sam's brain and the prominent granuloma in Shelbie's.  Not to mention if Sam is a candidate for brain surgery.

I realized tonight that I might be in denial.  I have no clue how to parent in this situation.  I keep pushing them and kind of getting after them to get and be productive. I guess if I see them doing something and being busy then they must be doing okay.  Shelbie put me in my place tonight.  I bet we have that conversation every 2 or 3 months.  I don't think I have it in me to just let them give up the illusion of being 'Okay' or 'Normal'.  It's really starting to be a big problem.  I'm not sure how else to be.

For tonight, I'm going to sleep better after the little break we had together.  



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Thursday, March 9, 2017

At Least I'm Not Dead

This morning, I got a call from the Social Security Administration telling me my social security number had been suspended.  It was a recorded call and they left a number that I was to call back in order to figure out what had happened.

I was quite concerned about this news but didn't think anything of the fact that it was a recorded call because every month, the IRS calls me to remind me about the money I owe them and it's a recorded call.  Anyways, I took down the number and called them right back.

There was an obnoxious calling tree just as you would expect from a government entity.  When I finally made it to a human being, sirens went off in my head!  The guy could barely speak two English words.  Before I even told him why I was calling, he asked for my name and birthdate.  I hung up in a big hurry.  I had a sick feeling it was fraudulent.

I looked up the social security administrations number and called them to find out what was going on. What happened next was kind of funny.

I told the guy what had happened and he said, "M'am, your social security number will never be suspended for any reason.  We may close your number out if you are dead but that's the only reason you wouldn't have a number.  Would you like me to look up your number and make sure you aren't dead?"

"Huh?  I'm not dead.  I'm talking to you.  I feel like I'm dead but you probably don't care about that."
The guy didn't even chuckle but went right on with his thoughts.  "Well, if someone gets a hold of your number, they can claim you as dead.  So I'll see if you're dead in our system.  Do you want me to?"

I really didn't want him to, but it might have been the most fun I had all week so I said, "Yeah, let's do that."  I might have secretly been hoping I was dead because that would have made for a great story and maybe I could get out of paying my tax bill.  A girl can hope.

So, good news!  I'm not dead!  I get to keep on keeping on!  However, the guy asked why I'm not an American Citizen and urged me to apply for citizenship.  I said, "Well, I don't think now is an ideal time to be stirring the pot of immigration.  I think I'll just ride out my Green Card a little longer and see what pans out with this government."  Ha ha...he didn't find that too funny.

All in all, it was a good day to be alive...for the most part.  I'm still a little bugged that someone had the nerve to steal my identity right in front of my face!


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Every Day I'm Juggling

It's a given fact that money doesn't buy happiness.  I think we can all agree on this point.

It's also a given fact that lack of money gets you a deep well of depression and changes your mindset.

I could ramble on and on about this point but I'm not going to.

What about other assets in life...do they buy happiness?

Time?
Possessions?  Hobbies?  Activities?
Friends?  Family? Health?  What about the vague sense of belonging and purpose?  Passion?

Many of these cannot be accounted for in any concrete way but we all know what it feels like when we don't have enough of them.

Last night, I witnessed a few little mental meltdowns with my little war weary tribe.  When it was all said and done, the crux of the problem is poverty...extreme scarcity.  Limited resources with limitless needs and wants.

I'm blaming it all on chronic illness. And me.

Up until a few years ago, I was the shock absorber for things that happened to them from a health standpoint.  I made every bad thing that happened sound like there was an easy fix. "Don't worry, it's nothing."  I would say...so they didn't worry.  They went out to play.  We managed just fine.  They never really had feelings that they were different...or 'other' or sick for that matter.  There were moments when they felt that, but the moments were fleeting and I would have something better to distract them from those discouraging thoughts.

But, they grew up. For the most part, if I had to do it over again, I wouldn't really change much.  I think there was wisdom in not allowing them to feel themselves boxed in by their disease. On the other hand, maybe there was a better way?  I thought I was gifting them with resilience; always laughing in the face of adversity.  Pushing through the pain. I even managed to teach them at a very young age how to detach from their feelings.  Dissociate if you will.  Sam is the master of detaching.  It's eerie to watch him prior to a surgery, go somewhere else to hide away from the anxiety and fear.

Now, as young adults, I can't fix it.  I can't laugh it away.  I don't have any distractions left they can buy into, it's just the raw and stinging facts they have to face.  Right now, we are far from resilient. Any of us.  We are poor in spirit...Everyday brings a new set of challenges and problems to face.

For them and for me...There is so much scarcity in our lives.  Health, hobbies, friends, time feeling good, a sense of belonging, a sense of purpose.

“Being poor, for example, reduces a person’s cognitive capacity more than going one full night without sleep. It is not that the poor have less bandwidth as individuals. Rather, it is that the experience of poverty reduces anyone’s bandwidth.” 
― Sendhil MullainathanScarcity: Why Having Too Little Means So Much

This quote is so true!!  Again, I'm not speaking about money, I'm just talking about everything else that is lacking.  I blame myself for how my kids are feeling right now because I have a bad case of tunnel vision.  I have two concerns in life and two only...get as much work as I can to pay bills and keep my kids alive.  I don't think about anything else.  I can't think about anything else. My mind is literally starving and overwhelmed. This disease process in my kids is relentless and expensive and it's killing us all.  My kids never see me doing anything but taking them to the doctor, handing out medication and working my butt off.  I can't remember the last time we sat down to play a game, watch a movie, eat a bedtime snack, do something fun, do nothing at all!

I don't know how to get off the ride.

"Immediate scarcity looms large, and important things unrelated to it will be neglected. ” 
― Sendhil MullainathanScarcity: Why Having Too Little Means So Much

And now...they are on it with me.

Spencer is just plain stuck.  He has no clue how to move forward in life.  How do you define a life when your are constantly fighting poor health?  How do you plan a tomorrow when today has dropped you to your knees?   Sam is running as fast as he can from making a single decision for his life.  The semester is ending in 4 weeks...does he sign up for another semester of struggle and missed work because he is really sick every 3 weeks?  Does he just find a dead end job and call it good?  Does he go on a mission...but at what cost to his health? Would he even be allowed to go?  His life is cluttered with distractions in an effort to avoid these decisions. And then there is Shelbie...if anyone had a good reason to quit, she does but the scarcity of purpose pushes her to her limits.

I wish I knew how to help my kids.  I wish I wasn't so depleted myself. I have my own complicated issues I'm dealing with but I have three other people and their complicated and unique issues I'm dealing with as well...Scarcity to the power of 4!  I wish I could take the time to break the cycle of just surviving.  Honestly, in the wee hours of the night, my biggest fear is that this is as good as it gets.
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Sunday, March 5, 2017

Taking a Break

I just had to take a break from the circus of mystery diagnosis.  This blog was/is starting to feel like a soap opera from the 80's.  Non-stop drama.

Nothing changed this week, still plenty of drama and excitement.

I got a note back from the Radiologist on Sam's tests.  They confirmed that his brain defect is bad enough that it warrants surgery. Normally, the cerebellum sits in the small indentations at the back of your head called the Foramen Magnum.  It's the opening to the spinal chord.  Sam's bony space is smaller than normal so the cerebellum and brain stem is being pushed down into the upper part of the spinal canal.  This is creating a pressure and limiting the flow of cerebrospinal fluid.

Surgery isn't always the first thing they jump to.  It's brain surgery and a lot of complications can happen.  They take into consideration the symptoms and how those symptoms affect the quality of life.  Symptoms can range from mild to serious and progress to cause irreversible damage.  Right now, Sam experiences some symptoms- losing his vision is certainly the biggest thing.  He also has neck pain, more issues with numbness and tingling in his arms, and muscle weakness.  Thankfully, balance hasn't been a problem for him but it can be for many with Chiari's.

The scans also showed a soft tissue mass in the lower, central part of his brain.  And...yes, there's more...He has a scattering of demyelination  or lesions just like Shelbie.  So, his brain also looks like that of an 80 year old.

Of course, I haven't mentioned any of this to Sam.  Well, I did tell him that they did confirm stage 1 Chiari's but only because he kept asking me.  I didn't tell him the rest.  He doesn't handle these things well.  He has a really hard time processing it.  Right now, with school and some other things going on, it's not the right time to spring this on him.

We continue to be in a holding pattern as far as medical decisions go.  They really aren't entirely sure what to do next.  The team will be gathering in some fashion to discuss what we do with this information on Sam.

The kids made it back from California.  They had a good time I think in spite of the difficulties they faced.  I honestly haven't spent much time with them.  Shelbie hasn't been feeling well and Spencer came back pretty sick with a lung infection and then as luck would have it, I suffered round two of the stomach flu on Friday night!  Round two was much worse than round one, two weeks ago!  Ugh. Today, I finally felt something other than nauseated.  

In other news...my car finally met it's demise!  It's a bittersweet story.  It became apparent driving home from Utah on Thursday that it was dying so Friday morning, I went straight in to the city to start dealing on some cars I had picked out.  Nothing was really working out and as the salesman was going back and forth with some magical man working out the numbers, I was shopping cars on the internet.  What is it with car shopping anyways?  Why is it always some dishonest, secretive, drawn out transaction?  Why do you never get to talk to the man in the back office who is deciding what to mark the car down to?  He's like the Wizard of Oz- some little man in a big office.  I hate the entire process of car shopping. I hate it so much, I'm never excited to drive off the lot with the new car, because I am so stressed and anxious the whole time.  I don't like the feeling of being controlled and taken advantage of.  

The deals in town didn't pan out so I came home and started dealing over the phone with a dealership in Utah.  By 2:30 that afternoon, I decided to drive, very carefully, back to Utah to buy the car.  I prayed all the way there my car would hang in there!  It did. I knew I had to make the deal work because I wasn't driving back in my old car.  I arrived at the dealership by 5:30 and by 7:30 I was on my way home again.  When I walked in, the salesman was waiting for me and we got right down to business.  There was still some number crunching to do but we got there.  He kept saying, "Do you want to drive it before you buy it?"

Honestly, I didn't want to.  I just wanted the whole painful process to be over with!  He wouldn't leave it alone so I said, "Sure, let's go for a drive."

He led me down and around town and all I wanted to do was go around the block and wrap things up. I'm just too tired these days to care much about the details of things.  I already knew I wanted to buy this car.  I had already done months and months of researching and watching prices knowing my car would be replaced at some point this year.  I chose this car because it's a stripped down model, no computers or bells and whistles.  It has no major belts that will snap and set off a $2000 bill of repairs and it's AWD which has become important to me since driving to Utah on these winter roads.

People ask me if I'm excited and happy.  It's a car.  I don't get too excited about things these days.  I just hope it runs well for a few years.  I'm definitely stressed about a car payment again.  I guess I won't actually be quitting any jobs any time soon.

Shelbie is really excited about her photo contest.  She received word that she was a finalist, in the top 500.  They opened up the voting for two more days and she made the cut again!!  So, now, she is in the top 100! They will be judging the last 100 photos this week and she will hear the following week where she stands.  She knows for certain that one of her pictures is in the animal photography division for a picture of Winston the hedgehog. It will be fun to see how it all ends up!  It is amazing to see how she has evolved as a photographer.

This week, we have no planned trips.  Spencer goes back to the Opthalmologist about his eye.  I pray his eye is normal!  


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