Saturday, August 23, 2014

Resignation

This week has been brought to us by the letter R and the word Resignation.

We began the week with flooding.  More stinking flooding!  Mother Nature has forgotten all about moderation. I spent over 2 hours out in the pouring, freezing rain; lightening and thunder on top of me, bailing water from the window wells and digging up my backyard.  I dug trenches to redirect the water.  I found this long hose, 3" in diameter, that I attached to my downspout and laid it in a trench that led to the back of my yard. Also that night, I dug up a huge tree because I couldn't get to the source of the leak into the basement unless the tree was out of my way.  That left me with a massive hole so...I had to hike down the street to a pile of dirt I noticed and filled up three wheelbarrow loads to fill in the hole.  Keep in mind...it's pouring rain the entire time!   My wheelbarrow had a flat tire so I was literally pulling a wheelbarrow filled with mud! Bleh!

At the time, I didn't really care about the secondary landscaping disaster I was creating but, in the light of day...it overwhelmed me!  It's such a horrific mess back there, I just want to soak it in gasoline and light it up!  Done!

I finally came to the point, even after all my work to remedy the problem that this week, with rain everyday, we were going to be wet, and stay wet. Resignation.  Just deciding that in my head seemed to make it all more manageable.  At least we made it through.  Yesterday, I went out again, in the mud and re-caulked and glued all the windows!  After that, we were dry...mostly.  Drier anyways.

The other part of the week had to do with Shelbie...still not 100% back to her normally poor health!  That's sad that we can no longer get to normal health, just normal poor health!  She is dizzy, and keeps falling down for no reason.  Her blood pressure is low but not low enough...or so they say.  I have taken her in twice because not only is the dizziness a problem but she has been having chest pain and shortness of breath.

The last time I took her in, the doctor literally slumped down in his chair and said, "I just really can't help you anymore."  Seriously?  I have never been so frustrated!  I couldn't take it so I just kept talking.  I didn't want to hear him say that!  I just wouldn't go down without a fight.  When he left the room for a minute to give some instruction to the nurse for a referral to specialist in Utah, Shelbie got so mad at me!

"Stop talking!  Just stop talking.  We look like idiots!  He is clearly overwhelmed and isn't going to help us." Then she started crying!

You know...it's a grand problem to deal with.  At what point do you run up the white flag and stop going from doctor to doctor who seem to have the luxury of giving up when the going gets tough?  This is our second blow in 6 weeks as far as losing doctors.  In theory, it sounds reasonable to stop looking for answers, at least until the next weird symptom and they are crying and falling apart and asking what is wrong and if they're going to die and being so completely overwhelmed with life that you...start the process of doctor hopping all over again. Doing something, no matter how futile is better than doing nothing...or so it seems.

So, it's resignation...I'm in a place where I realize I can't change what is happening to Shelbie.  Either it will get better or it won't.  Either she will live, or she won't.  It's not at all fun and we are in uncharted waters and really hoping it doesn't swallow us all up!
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Saturday, August 16, 2014

Happy Birthday Shelbie

Shelbie celebrated her 22nd birthday this past Wednesday!  I never feel old until my kids have a birthday and then I can hardly believe my age...let alone theirs.

This year, we played it pretty low key.  Shelbie was still recovering from her metabolic crisis from the previous week.  We went out for dinner but it took her three hours to shower, dry her hair and get dressed.  She had to keep stopping to sit down and rest.  It was sad but it was an improvement over the last 5 days.

These are two of my favorite pictures of Shelbie.  The first one is when she was three years old. Just a little tiny thing with a big personality.  Already at age three, she had had countless seizures and a serious drop in platelets and recurring bouts of petechiae, as well as neutropenia...the beginnings of bone marrow failure.  We had no idea, that just two years from this picture, the course of our life, her life would change dramatically!

I could look at the second picture all day long, every day!  I love her unguarded, spontaneous smile.  This picture was taken just before going on stage to sing the opening number for the Survivor's lap at Relay For Life.  She sang Ordinary Miracle by Sarah McLachlan. She was just getting ready to start chemotherapy that would eventually cause half her hair to fall out but she was happy!  I love remembering how happy she use to be...life has been hard for Shelbie in so many ways.


Despite all the challenges she has had and current mountains to move and climb...she amazes me! She just keeps going.  It would be so easy to go to bed and stay there but she keeps trying, keeps fighting.  

I'm one lucky mom to have a best friend who is also my daughter. 


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Monday, August 11, 2014

Reactions...

Another eventful week around here.

Shelbie had her transfusion on Thursday.  She had a pretty good reaction about 2 hours into it and we had slow things down, add in some new meds and wait until it passed, which it did and things seemed fine.  Later that night, she was with her dad and aunts and turned all loopy and really confused and out of it.  They brought her home and she truly was acting weird.  I just figured it was a combination of stress, fatigue and the IVIG.  She eventually fell asleep and that was the end of that...or so I thought.

Friday, the headache started which is really early, historically speaking.  We started the migraine meds at the first sign of trouble but it kept escalating.  Eventually, I had to take her to the ER.  We got home at 2:30am, I stayed up til about 3:30 just to make sure she was okay and sleeping comfortably.

Saturday morning came early...well, about three hours after I went to bed, the neighbor decides to start weed whacking along his back fence which is about 15' from my bedroom window!  To say I was grouchy was pretty much an understatement. I laid there trying real hard not to curse the situation and then the phone started ringing off the hook which was odd for a Saturday morning.  I got up and got to work. I was sleepy all day!

The migraine was nagging and whining at her all day long but Shelbie tried to ignore it.  She was taking migraine meds every two hours and ibuprofen at the hour.  It was not good.  She was hosting a bridal shower and had to make it through.  At 11:00pm, it was more than she could handle and the meds weren't working anyways...so it was back to the ER.  Again, they mixed up the migraine cocktail and we got home at 2:30.  I stayed up again til 3:30, laid awake another 45 minutes then fell asleep for a couple of hours.

Sunday, she woke up mid morning and was feeling so much better!  I thought...hooray! Let's go for a drive!

It has been a hard week and I needed to get out of dodge.  So, after church, we decided to head up to some local waterfalls.  I missed the turn so we just kept driving, no real agenda.  Next thing I knew, we were in Yellowstone! Little did I know, we wouldn't be there for long!

Not even 10 minutes there and Shelbie said, "I don't feel so good.  There is so much pressure in my head!"
"Take some migraine pills" I said.
We kept walking and then she said, "MOM! I can't see out of my right eye!"
"That could just be caused from the migraine."
"MOM!! everything is super blurry out of the other eye! MOM!!!"

From there, everything happened so fast!  She became dizzy, nauseated, and extremely weak!  She could hardly stand! She couldn't put words together. Then, her whole body started bloating up!  Her little fingers were at least double in size.  I couldn't believe what I was seeing and if I hadn't of seen it, I never would have believed it!

I remembered my friend visiting just two weeks prior.  Her son has Mitochondrial disease and they found out the hard way that people with Mito can't tolerate high elevations.  They were camping in Yellowstone and she had to bring him in to the hospital.  I met them there and got a quick education on Mito and altitude sickness.  At the time, I thought I was just there for support.

Once I got Shelbie in the car, it hit me that she was going through a mito crash due to the altitude!  All of that from two weeks ago was clearly to prepare me for this moment!  I drove to a gas station, ran in and while grabbing candy and Gatorade, called my friend to make sure I was doing the right thing.  The one thing the body needs is sugar and lots of it!  Her body had been quickly depleted of energy in the mitochondria because of a dangerous build up of lactic acid. (not like drinking too much milk) at a cellular level.  So, because it had no energy, it was starting to shut down the non-vital organs like eyesight.  Oxygen was being sent to the vital organs like her heart...though that was racing too.

I tried to get the sugar in her as fast as I could while speeding back home.  She couldn't even hold a candy bar, she was that weak.  For several miles, she just laid in a catatonic state, not blinking...nothing.  I was so scared and home was still 50 miles away.

I drove straight to the hospital and got her checked in.  She was in bad shape!  The whole situation was made harder by the fact that I could no longer say, "She has Shwachman Diamond Syndrome." or "Dyskeratosis Congenita"  I had to go into this long, drawn out history about bone marrow failure which may or may not be secondary to an autoimmune issue which may or may not be primary, could be secondary, ITP, connective tissue disorder...vasculitis.. Dsyautonomia, mitochondrial problems, shortened telomeres, blah, blah, blah...The doctor was very patient and listened closely.  I was really impressed with him.

Long story short, they started her on treatment for Altitude sickness which is a liter of D10- sugar water, and a liter of sodium!   I was kind of freaked out by the amount of sugar they had to pump in her before she started coming 'alive' again.

Today, she is doing better but very weak and tired.  The whole episode completely drained her body of energy!  I have never thought of the mito being such a problem for her like I have for the boys.  I think that because her body was already stressed with the IVIG, it just couldn't handle the change in altitude.  Not only that, the lactic acid probably started building on Thursday, with her transfusion which stressed her body and became toxic.

The one amazing thing to me is how efficient, even a sick body is, of taking care of itself.  Instinctively, it knew what to shut down and what to keep running.  It's really quite amazing if you think about it!

So, I have been feeling so blessed and grateful for the way that God works.  Without the trial my friend had just two weeks ago, I never would have known what to do for Shelbie.  It was that sugar in Yellowstone that kept her alive really.  Even the doctor asked what I had done for her and when I told him, he said, "How did you know to do that?  It was the very thing that saved her."  It was truly a tender mercy, an act of God.  There's no denying that!

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Friday, August 8, 2014

Love Songs...or something like that!

On my way home from the city last night, I tuned in the radio to the local 'love' song station.  Every night, they play love songs.   Well, they call them love songs but they were really songs like, "Killing me softly", "Where do broken hearts go?" and "I'm all out of love."  Ya, that sounds about right...sounds about like my love life!

Anyhow...they played enough Air Supply to throw you back to the 80's and the Saturday Night Youth dances.  

Awww, the Saturday Night Dance.  Our church would sponsor a teen dance night every single Saturday.  I think I went to almost every dance not because I enjoyed them but because I was wildly desperate to trick myself into thinking I had a social life.

There I stood, against the darkest wall of the gym, usually alone because the people I went with were more of the popular variety.  You could tell when the night was winding down because they played more and more sappy love songs or heart break songs!   The dance floor would fill up quickly.  Some couples thought they were all that and showed off their exaggerated ballroom waltz moves, lapping the edge of the crowd.  The rest of the bumbling, awkward, rebellious teens just hung on each other, sweat beading up on their brow from air that hung heavy with the angst of teenage romance (not like I would know anything about that mind you). This is when I started to get up the courage to ask a guy to dance. I had no choice!  I knew when I got home my parents would ask me if I danced!  I had to be able to tell them I did.

So, I hunted down another fellow wallflower, shuffled over and asked him if he wanted to dance.  I was pretty confident that he would say yes.  I was careful to choose someone equally as clumsy and gawky as myself to ensure I wouldn't be embarrassed with a pithy 'no' and cold shoulder.  By now, I had already sleuthed out the guys who had been turned down by pretty girl after pretty girl the whole night.  I could read the desperation on their faces.

"Wanna dance?" as Air Supply cried out in the background.  

He would offer his sweaty hand and I would take it as he led me to the dance floor.  There we stood, barely moving, swaying slightly, missing the beat of the song,  his greasy hair and acne ridden cheeks lingering over my less than confident, shoulders.  Looking back...it was so pathetic!

Looking at me now?  Still pathetic...but at least I've had the decency to stop settling for the greasy, desperate type.  After a small moment of reminiscing, another Whitney Houston song came on; I have nothing.  Awww, it seemed fitting.  I turned it up, belted out a few lines I remembered from my dramatic 16th year of life and drove home...the same little wallflower inside.

There you have it.  A little throwback to the good ole' days.

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Sunsets


Tonight, I left the city just as a storm was rolling in.  There was an amazing sunset so I had to pull over and take a picture.

As I drove home, I thought about how the stormy, dark clouds made the sunset look extra beautiful tonight.

I thought about how stormy things have been this month and I have not once, stopped to notice that the sun still sets on the bright days and the dark days.  I'm so busy trying to run for cover to even notice that there is still a brightness shining through at the end of the day.

Tonight...I'm glad for the chance to just sit and be still and notice the sun setting quietly while the clouds stirred and toiled above.  Very much like my life...but beautiful still.


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Thursday, August 7, 2014

Hope


Needed this reminder today.  
Shelbie had her transfusion.  
Didn't go as well as usual.  
She ended up with a lovely reaction about noon.  
Had to stop things so, as a result, didn't get home until after 8pm!  

       A long, and very unproductive day.  Hospitals zap my energy and make me realize just how very tired I am.  How very stressed I am and how very annoyed I am with some people these days!  

       Sometimes, I wish I didn't have to live the kind of life that offers up no other choice than to be strong.  Sometimes, I wish I had options like other people...someone to help carry the load, share a meal with, sit on the porch, visit places that only exist in dreams I once had ...nope, that's not my burden. My life took a different road.  I wish I was more content with it, but I'm not.  It's hard.  It is what it is.  We just seem to keep slogging through the day to day.
Tired. Hopeful...a little bit at least.


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Wednesday, August 6, 2014

The Learning Curve

I've learned an awful lot about myself over the past 6 weeks.

I have learned that I really am human.  Imagine that.  ME?? HUMAN??

I have learned that there is no end to the number of trials one person or a family can have. I'm not exactly sure why that is or how it can be.

In 5 weeks, I have undergone major surgery with 4 solid weeks of vertigo, withstood a flash flood, lost two major jobs, made a trip to Seattle Children's, went on a job interview to Afton, went on a job interview to Jackson Hole, had some kid drama, had some family drama, had my life threatened and worked 13 part time jobs...and still, just for the record, my darn ear is still bleeding inside!  All of that in 5 weeks!!  It's a bit crazy if you ask me. Tomorrow...transfusion day!  Another long hospital day.

In all of this, I have learned that I just can't do it all.  Out of necessity, I have had to say NO to a few things. It's been really hard to do that.  On top of the stress of daily living, I live with guilt for not being everything to everyone!  I've let some people down, faced their disappointment and still lived!  Nothing horrible and awful happened when I said NO.  It's a pretty radical way to think for me. It's been totally necessary.  I had to ask to be released from my church calling in Primary.  It seems to be the little things that mow me over with the cutting edges of 'overwhelm'.

I've also learned a lot about prayer, my relationship with God, my relationship with people around me and my relationship with myself.

I've learned that I'm starting to see parts of me that I'm really not sure I like.  For instance, I care less about things than I use to.  I care less about what people think of me.   I care less about leaving my house.  I care less about people I use to care a lot about.  If I cared less for reasons that made sense, like to keep a healthy boundary then maybe it would be okay but mostly I care less because I just could careless.

Shelbie has some really crummy friends.  I mean, really crummy!  The epitome of bottom dwellers.  I use to bend over backwards to make them feel comfortable in my home, be their friend, make them food and all the while, they would stab Shelbie in the back repeatedly.  With everything going on lately, I just said 'forget it'.  I stopped trying to pretend to like people I really can't stand to be around or have in my home.  When they come, I no longer meet them at the door with a smile and warm cookies, I just retreat to my room and wait until they are gone until I surface.  Sometimes, it feels very empowering and free to do that but then I feel bad for being so cranky.

I'm not exactly sure where this meandering post is going...I guess it's all to say, I am learning some valuable things about life and myself.  Things I'm proud about and things...not so much!

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Sunday, August 3, 2014

Time Travel

Last night, Shelbie and I watched a time traveling movie, About Time.

The men in one family were able to travel through time, the gift was disclosed to the young man on his 21st birthday.  So the whole movie is about this ability to travel through time.  After some years, his father finds out he has cancer and sits his son down for one more family secret.  The secret is that he could and should, live each day twice.  Live it the first time as it unfolds but then travel back and live it again, this time without all the angst of the day and observe each moment.

How great would that be?  If you could really live the hard days over again, knowing full well it all works out in the end!  I can't imagine how much easier and joyful life would be.

I got to wondering, even though it isn't possible to time travel, is it possible to get through the day the first time, without worry?  In theory it is.  It's called Faith.  Living in the moment.  Getting your Zen on!

I wish I was better at that.  I need to work on that.

Instead, each day is filled with the most bizarre twists and turns of fate that make my stomach roll.  I find that by the end of the day, my knuckles are white and my muscles are knotted. The angst is like a leather cord around my neck, about to choke off my last breath!  That is no way to live!  I hate living each day on the edge of my seat.

So, no time like the present.

Early this morning, Sam woke me up at 4:10, puke bucket in hand, the whole nine yards.  Normally, in this moment, I would have felt the familiar grip in my gut, prepared for the worst case scenario.  In a split second, I would have already rearranged my entire day and made plans for this escalate to epic proportions, a bacterial infection raging through his body.

Instead...I got him some Zofran so he wouldn't puke forever and made him comfortable in my bed so he could be close to a bathroom.  I didn't worry and fret, just did what needed to be done without judging the situation any further.  It felt good!  Almost as good as time traveling!  Admittedly, it takes an awful lot of energy and patience to pull this off, not to mention, mindfulness!  It takes a lot of mindfulness.

I'm taking this on as my challenge for the week.  I have a big week ahead of me with hard things to do every single day.  I'll let you know how it goes...just for the record.

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