Wednesday, August 30, 2017

The In-between

The waiting...

Here we are on the corner of In-between.  We are impatiently waiting until the 12th when we can get this heart show on the road. I have spent a great deal of time this week trying to understand the timing of God; why things happen the way they do.

I haven't decided upon any answers.  It's an adventure for sure!  I think for the most part, answers come just little by little, always on time.  A little light to see what's next and then a little more.  I can see some things falling into place and in a small way, I'm glad that we have an extra week, I can see now that it's a bigger blessing than I thought.

I have had a really hard time trying to find someone to cover my cleaning for the 5000+ square foot office I clean.  I finally had a thought of who I could ask and that has sort of fallen into place. It's someone who desperately needs the money and I desperately need someone to help me.  Her husband has been out of work for over a year so it will be a win/win for us both.  I am going to have her help me even when I'm not out of town so I can finish earlier in the evening.

One concern I had about this trip for Sam's surgery,  is the other medical trip that comes just a week after for some big tests for Shelbie.  We've been waiting 4 months for these specialized neurological tests, so two big medical trips in two weeks is expensive...hotels, eating out for two weeks, dog boarding...blah, blah, blah.  I have had a client in Colorado who has owed me money for easily 6 months.  I finally stopped working on the plans because I had no hope of ever seeing that money.

Out of the blue, he texted me this afternoon and said he put a check in the mail today!  I think it will be everything I need to cover all my expenses and some left over to help Spencer get his apartment furnished.   And then, Spencer's friend called and said if Spencer would help him haul 4 trailer loads of tires to Salt lake over the next three days, they would let him fill up one truck with furniture he needs to get to his apartment!   Spencer won't have to pay for food or gas or a rental truck to move stuff!

These are such small favors from Heaven but I can't even describe how relieved I feel to have just a few tiny things work out for a change!  It has been a challenge to keep us from getting discouraged.

I hope I can use my time wisely over the next two weeks.  I need to shore up our spirits to get us through the month of September.  We can't go into this distracted and discouraged.  We need to go in with our spiritual eyes wide open, looking for God in all the places we least expect to find him.

I'm starting to feel better.  I've been dealing with a kidney stone for the past however long...I think today it moved on from where it has been trying to kill me.  Pretty sure I haven't passed it yet but I'll take the change of pain.  I feel my energy coming back slightly or maybe it's just a little manic phase since I haven't slept much to speak of since Sunday.  It's probably that.  I've got one more extra long night and then I might get a solid 5 hours like the good old days, when I use to sleep.




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Monday, August 28, 2017

The Climb

After spending 6 hours in the ER Sunday/Monday through the night, I am realizing that life is hard and getting harder.

Shelbie has been sick with something all week long, it finally got pretty bad on Sunday and by the evening, I knew we needed to take some extra measures so I took her to the hospital.  She has E. Coli.  Imagine that?  Because that's exactly what we needed right now.   Her and a friend ate out for dinner last Monday and they were both sick that night and the next day.  Her friend got better but Shelbie did not and has gotten worse.  It could have been the restaurant food but since she is so badly immune compromised, it's possible, the E.Coli we naturally have in our system got out of hand and spilled out into her blood. I think the latter is more believable.

She missed her transfusion two weeks ago and last week, the tube snapped in half where it joins the pump and plasma poured out so fast!  We lost a third of her dose so she is in a very compromised state.  Either way, she's sick and has had IV Antibiotics and oral so that should kill it.  She is doing a little better tonight but has slept since we got home at 2 am, until just an hour ago.  Not contagious so that's a blessing!

But wait...it gets better.  Sam is sick.  I'm pretty sure he is headed for pneumonia, if he isn't there already.  His lungs are junky and it's painful to breathe.  I have started him on antibiotics just because, but he sees the doctor on Friday, here in town.  He's a little perkier tonight. This means, his surgery has been moved to the 12th.  He has to be in tip top shape.  There are too many factors against him, getting over a bacterial infection in the lungs doesn't need to add to the complications and I don't want him to be neutropenic.  Not only that...the hospital had a scheduling issue.  It's for the best but now, to wait two more weeks.  It's like waiting for Christmas only not as fun.  I just want this over with.  I want to be on the other side of this, healing.

And, not to be outdone, I got Spencer's monitor report on his heart- 1246 symptomatic episodes of sinus bradycardia! For months, the doctor has been telling us it must not be a problem.  Last month, at our visit, they changed the parameters and sure enough...all in the mid 30's, even 20's. Ugh.

Last week, on our way home from the hospital, we stopped at the climbing gym in the city just to look around and mostly try to cheer Sam up.  I promised Sam that we would go back before his surgery since he will be grounded from activity for a couple of months.  So, we went!  I wanted it to be a challenge for us so that I could reiterate to the kids that they can climb any mountain in their way. No matter what.

It was all that and more! I couldn't very well teach them about trials and challenges without attempting this myself.

The gym staff is awesome.  They ran us through a brief training and then we were off to experiment on our own.  The boys had me go first.  I had no idea what their ratings were and turns out I chose a moderate course rather than beginner.

 I climbed with Spencer on the Belay.  It was SCARY!! It's nearly 4 stories high and I made it to the very top!  It was so hard.  Every little bit, I would look down at the boys and say, "Okay, I can't go any further.  I'm so tired, my arms and legs are shaking."  They would reply, "Nope!  You can do this!"  then they would direct me where to put my foot or hand because all I could see was the wall directly in front of me.  I couldn't get a good look down, or was scared to.

 Here I am at the top!  First attempt and turns out I was on a Novice run.

 Sam made it too and I got to Belay for him.  This was a huge exercise in trust.  Trust in the ropes, trust in the person on the belay, trust when it's time to come down, you just let go of the wall and 'sit' while the person on the other end of the rope, lowers you gently down.

Sam at the top

Me on belay- I could tell the boys were pretty anxious with me on belay but that was part of the experiment...to trust that we are here for each other.


 The boys did so well but I expected that of them.  Even still, it was super challenging and they were winded and tired halfway up but pushed through in the very same way they tackle life.

Spencer climbing

Sam climbing

The peg board.
It was probably the best family activity we have done in awhile.  It really helped put things back in perspective for me.  I've had a hard day with Sam's surgery being pushed farther into the month, him getting sick, Shelbie sick and Spencer's heart acting up and he's down another 3 lbs!

They have some automatic belays at this gym.  So, if you don't have a climbing partner, you can still do it safely.  I tried that a couple of times.  That is terrifying!  When a person is running the ropes, they can adjust the speed at which you come down.  When the machine is doing it, you free fall for a bit until it catches you.  Those first few seconds are not fun and you just pray the machine doesn't break at that moment. 

It made me think about the trust we have to have in our Father in Heaven.  He is on the end of the ropes.  He isn't going to let us drop, even at the height of our trials, especially when it's the most terrifying.  Once I got half way up that wall, I had some serious second thoughts about this activity.  It took every ounce of strength and courage I had to keep going.  At one point, I was frozen up there.  I couldn't move a muscle and just clung to the wall like a bat trying not to seen!  The boys kept shouting up affirmations and coaxing me along. 

We all get stuck on our climbs in life.  We all experience terror, exhaustion, weakness.  It's nice to have someone cheering us on, believing we can keep going.  You can't turn back, you can't cash in your chips and give up, you have to look up and keep on climbing regardless of the pace.  It's okay to stop and rest...but you have to keep moving ahead.  

It was a memorable moment.  There were little, little kids bouldering without harnesses or ropes.  One little girl, about 7 was scampering up a 15' wall without any ropes.  When she came down, I asked her how long she had been climbing and it had been just since March.  I asked her if she was scared and she said, "Nope.  I have been taught and I have learned what I need to know and I trust in the ropes so I just do it."  

Ahh....the wisdom of a 7 year old.  

This week, and next I really need to remember that I have been taught, I have learned and grown in faith...I just need to do this.



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Thursday, August 24, 2017

The job at hand

We have survived the day after...

Here's what I'm thinking...we will be okay.

Sam's doing okay today.  He has almost finished covering his bedroom wall in his sketches.  Maybe tomorrow he will start painting it. I'm glad he has chosen to stay busy instead letting depressing thoughts take over.

Shelbie has been having the roughest of times with seizures and then constant sleeping.  The doctor told me that she would sleep forever after a big seizure.  She has been struggling the past two days with something, so I had a pretty good idea that that would trigger some seizure activity and her meds still aren't up to therapeutic levels.  She must have had a big one in the night because she's been hard to wake up and for the few minutes she was awake, she wasn't making much sense and couldn't formulate much of a thought.  Tonight, she seemed much better.

In a strange way, it's a blessing.  She had to get to the city for some props she needs for a big photo shoot tomorrow.  I couldn't drive because of work, she couldn't drive because of her condition so Sam volunteered.  It's good they have each other to keep themselves busy tonight and there is nothing like a little service to help you keep your focus on what matters. Bless his heart...he's now making tissue paper pom poms for his sister's props for tomorrow.

Spencer is experiencing some good things with work.  The video director for James the Mormon called and really needed him to help out on a big music video underway so he left this morning with just 20 min. notice to get to Utah and on set.  His dreams are underway and I can't complain about that.

I'm not very good at staying mad or frustrated for very long.   I've been thinking about how fast this all transpired with Sam.  If it wasn't for so many bouts of pneumonia this year, we never would have found his immune problems and if we hadn't found his immune problems, we would still be stuck in the boat of no one taking his heart problems seriously.  It was our Immunologist who got the attention of the doctors we needed, because the immune medications mess with the heart rate.  He was alarmed at Sam's heart rate and blood pressure himself.  It felt nice to have someone validate what I've always worried about.  It's another backwards blessing but a blessing nonetheless.

In another twist of fate, Sam's boss is wearing a holter monitor in preparation for a possible pacemaker too.  I think it brings Sam a lot of comfort that they can compare heart stories and I think his boss has a little more compassion and patience with Sam's situation.

I can see more clearly today, that we have been divinely guided.

Right after our appointment yesterday, I got a call from a girl who needs an internship and doesn't expect to be paid.  At first, having someone follow me around all day for several weeks was the last thing I wanted but I had a distinct feeling that this was an answer to prayer.  The more I thought about what I could have her do, the more things I decided would be helpful, and she would really free up some much needed time for the architecture projects I need to give more attention to.  She starts tomorrow.

It's another testament to me that my plan is rarely as simple as God's plan.  A few weeks ago, I heard a speaker at church say that God would provide for us in His way and His time.  If I'm not careful, it's hard to see that at times.  I was wanting to get rid of some of my extra jobs, live with less income...that was my plan.  I hadn't thought that having someone else to share the load was a possibility.  It makes perfect sense.

Finally...the job at hand...

I need to get myself together.  I can't very well keep my kids gathered up in their state of unraveling if I can't even manage that myself.  Last night, I was reading in lieu of sleeping because apparently, my body doesn't care for sleep.  In David Brooks book, The Road to Character, he said in regards to people with character, "They are not blown off course by storms.  They don't crumble in adversity.  Their minds are consistent and their hearts dependable."

Now is not the time for us to crumble.  Now is the time to suffer well.  I will be the first to admit I wrestle with this lately.  I use to be a lot better at it.  There is a fine line that separates suffering and suffering well.  I really want to handle my life better.  I want to be a mom my kids can depend on...I can't be their life preserver, that's God's job but I can be a buoy.  I can stay afloat in the storms and let them rest on my strength when they need to.

It's a big job.  It's my job.
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Wednesday, August 23, 2017

Heart Surgery

Life is funny...you have two weeks to prepare for the reality that your son will likely be having heart surgery and for two weeks, you imagine what that could be like.  You mull it over, roll it around in your mind and you almost get use to the idea.  You try it on, imagine yourself on that day, in your mind they wheel him away, down the sterile hall, through the automatic doors and there are sounds that only echo in the back halls of a hospital.  And ...it's okay.  'It's going to be okay', you tell yourself.

But then...you hear the doctor say, "Sam.  We need to fix your heart and I think we need to do that with a pacemaker."

And then, it sounds like he is speaking anything but English.  You look at the doctor and his lips are moving in slow motion and then you glance at your Son and without the wall behind his chair, I imagine he would be free falling in that moment.  You notice his flushed face, the way his eyes just sunk into his cheeks and you know that he isn't even in that moment either...he's somewhere else at a safe distance to take this all in...slowly.  Little by little. You look back at the doctor and wonder why he can't see that he is talking to a 19 year old boy.  He looks so healthy.  He is suppose to be so healthy.  All 19 year old boys are healthy.  He should be on a mission.  His friends are on missions.  He should be anywhere but sitting in this terribly laid out room, hearing that he has to have surgery to fix his heart.

Everything is moving fast but going nowhere.

I have to plan how this is going to happen but first...I need to buy him some underwear!

Underwear?  Yes.  Because, I remembered three years ago when we first found out about the AVM's around his heart, the pressure building in the left ventricle, the pressure in his lungs, the hole in his heart...He had been nagging me about the fact he needed new underwear and I kept putting it off because I literally didn't have enough money to buy him new underwear.  But that day, I took him to buy new underwear.  He told me he wouldn't need it, he was dying.  I told him he did need new underwear...life was not going to end for him that day and to prove it, I bought him new underwear.   For some reason, in that distant moment, new underwear was a sign to him that life would go on.

I don't know why my mind went there.  Sometimes, I think I just can't handle what is being said and I escape into pointless places to rest from the ensuing trauma.

All of that from 3 years ago has progressed.  The results of his Holter Monitor showed mostly heart rates in the low to mid 30's, some low 40's but nothing higher.  The doctor confirmed that he does have a right bundle branch blockage which means the right ventricle is not receiving electrical stimulation.  This is different from the sinus bradycardia but hopefully, the pacemaker will take care of that problem which is farther down in the heart.  He also has abnormalities in his T-wave which is much more pronounced from 9 months ago and a mild left ventricle hypertrophy.

I was so impressed and relieved that our doctor took quite a bit of time to do some research into Dyskeratosis Congenita.  Nowhere in the literature, is there associated heart problems with DC but he said that Sam's heart is just old.  He sees similar things with his very elderly patients.  Since DC is a telomere disease with short telomeres that cause organ damage and failure, he seems to think these heart issues are attributed to DC.  We can't say for sure but it seems suspect.

The pacemaker is only a band-aid.  It's not going to fix all of Sam's problems but it might allow him to keep doing the things he loves.

I realize that as far as heart surgery goes, it's not as life threatening as open heart surgery.  Sam has a 5% chance of some serious complications and infections.  There is a small concern about the condition of Sam's lungs in doing this surgery but  they are aware of those complications, the AVM's and his very poor immune system so they will be watching him closely.  He will be in the hospital for just two days.   The surgery itself will take 2-3 hours and he will be awake for the duration.  That totally sucks!!!  I will never, as long as I live understand why people have to be awake for this kind of thing.  I don't understand it and I have yet to find anyone to give me a reason with more substance other than...insurance won't pay for anesthesia.   Insurance!  I'm so sick to death of health insurance in this country.

Before I say something I'll regret...or won't...

I guess my anxiety and worry tonight isn't so much about the procedure.  It's about the fact that this disease is taking so much from us.  Everyday, our story changes.  Everyday, what we expected yesterday is completely different and we are constantly regrouping...trying to find stable ground...something normal. Everyday, something else sets us back.  WE never get a break.  We never just get to be still.  I don't want to be angry and rarely do I feel this way but tonight, I'm just angry.  I'm lonely.  I'm sad.  I'm angry.

Sam's pretty upset but won't talk about it.  We got home and while I got busy making dinner, he went up to his room.  When I went up to check on him an hour or so later, he had drawn the most incredible mural on his wall! I couldn't even believe my eyes!  I had no idea that my son was an artist!  He had at his feet, a sketchbook with drawings in it.  He was taking one of his sketches and redrawing it life size on his bedroom wall!  Way to channel his emotions!  I was so proud of him in that moment.  My kids amaze in ways I can't describe.

I know we will be okay...just not today and maybe not tomorrow.

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Monday, August 21, 2017

Totality

I had high hopes for this weekend.  We live right in the path of totality for the solar eclipse.  I'm lucky enough to have seen a total solar eclipse once before when I lived in Canada.

For months, this event has been talked about, rumored about, exaggerated about...there were big expectations, not only for how amazing the event itself would be but the number of people that were projected to stay in our little town for the weekend.  Up until this morning, it was like throwing a party and no one showing up.  I kind of felt sad and disappointed.

But...this morning, all that changed!  This town was crammed and it was so cool!  I loved it!  I loved the energy which sounds super weird coming from an introverted recluse who hates crowds, spontaneity and basically living large!!  Just kidding...I actually sometimes really love all that!  I was so excited in fact, I couldn't sleep last night!  Just kidding again...there were other reasons I couldn't sleep!

Anyways...while I wasn't sleeping, I decided that I missed the days when I was a fun mom.  The cool mom.  The mom all my kids' friends wished they had.  I'm not that mom anymore, at least this past year.  Even on Sunday night, we struggled together.  It was just an all round, hard, really hard and crummy day.  We were up til nearly 2 am trying to get through some hard talks about what's coming next.  So...as I laid there crying, when it was all said and done, I knew I had to rescue our life and bring back the life we use to enjoy!

I got up really early and ran to the grocery store for some fun food!  Cosmic Food!!! Eclipse eating food!!

Spencer was the only one up when I got home so we went for a walk down to the airport and watched so many planes fly in!  That was amazing in itself.  Our little airport was wing to wing with airplanes. 

For breakfast, I made double chocolate chip Totality pancakes!!  I made the whole works, sausage, eggs...Yum!


After breakfast we headed out an upstairs window and climbed onto the garage roof and then the very top roof of the house.  What I wanted to see as much as the eclipse, was the  360
  degree sunset!  To do that, we had to be above the trees.

 This was an early view through my eclipse glasses on my phone...not much to look at.

 Here we are on the roof...two of the kids' friends from the YSA ward came over for our party.  We threw cosmic brownies off the roof to our little neighbor friends below!  It was fun up there!

Sam


Have you ever noticed that cameras don't do your eyes justice.  This was as the shadows were getting long and the sun was disappearing. 


A little darker still...

 The sunset at 11:30 in the morning was stunning!  I had such a moving experience but nothing compared to totality!  At that moment when the moon filled the sun, silver blades of  the brightest light exploded from behind the most beautiful moon! Two of God's most intentional creations of light, together and the world fell still!!

Our little world was completely still and nothing could be spoken but an unheard awe of wonder that God is in His Heavens!  And then, just as suddenly, the streets erupted with cheers of exclamation and we were filled with emotion!  All of us!  And it's the coolest thing in the world to hear your children speak of the strongest spirit of holiness they have ever witnessed, come upon them.

It was such a Heavenly and holy experience!  One I hope I will never forget.


I wish it could have lasted longer.  It was too fast and too beautiful.

As we sat there, completely drained of energy, in a sense...we each reflected on what the experience meant to us.

I have such a hard time with the violence and anger that has exploded in this country over the past few months.  I have a hard time with the anger and frustrations that I feel personally with some relationships I have in my life right now.  I hate the agendas, the angst, the selfishness, the confusion, the difficulties, the strain, the insecurities, the loneliness, the....on and on.  Some of it I can fix but some of it I can't and that's a hard thing for me to live with.

Life isn't as simple as it once was.  We have a hard time fitting in to each other's world and that makes me so sad.  Part of the conversation I had with the kids at midnight on Sunday, was how we all feel alone and misunderstood.  One by one they described how they feel like an island, so distant from love and belonging. Don't we all feel like that?  And that makes me sad.  We need to be more loving.  Now more than ever, we need to share more light with one another, be gentle, kind and loving no matter how much the darkness tries to choke the light.  This weekend, I tried to show more caring and even though it may not have been seen in the loving light it was offered...it feels good to do so.

It felt good to walk through our town sharing in this happy moment and maybe for one small moment, good things came from the juxtaposition of light and dark that Heaven displayed today!
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Saturday, August 19, 2017

Heart updates and such

It's been a pretty tough week around here.  Personally, I've had some issues myself to deal with that are a little disconcerting.  Not feeling well for such a long time prompted me to find a doctor who would actually listen to me.  That led to a series of tests in the hospital.

I'm pretty sneaky when it comes to stuff like this.  The kids get a little anxious if they know I have to have tests and stuff so I try to not let them know.  The big concern has been my kidney.  It's had a growth in it that we've been watching for awhile but lately, every day I feel like I have the start of a kidney stone and the more I drink to stay hydrated, the worse I feel.  No final word on that, I will find out on Wednesday of the coming week.  Yesterday and today have been miserable in the pain department so I hope it's something that is nothing...or can be fixed easily.  Today, I had to spend a little more time having tests done and those results will also be back Wednesday when I see my doctor.   It's no fun.  I'm sure it will all be okay in the end but I love all this time I have to worry and fret.  Such a great past time.

The real kicker came tonight when I got Sam's cardiac testing results.  I'm really scared that maybe they won't be able to Pace him.  (That's the term used for people who get a pacemaker...I guess. A little Cardiac slang cause I'm cool like that.) I guess since I'm not an electrophysiologist, I will sit tight and let them decide on Wednesday.

The report said the following abnormalities were present:

He has a Right Bundle Branch Block- the right ventricle in his heart is not activated by the electrical system and impulses.  The left ventricle hypertrophy which means the muscle wall is getting abnormally thick.  This is the kind of thing that causes sudden death.  I have no idea what this means for Sam as far as treatment options but I know it doesn't carry a good prognosis.

Even still...I am going to choose to believe that we are finding out about this so that something can be done to preserve his life.  I'm still really scared and anxious about this but in reality, this could be a gift.  There are many people who die from sudden cardiac death and didn't know they had a problem.  They had no chance to fix it and no warning that they were sick.  We know.  Sam has symptoms of this and we have a chance to fix it.  That's a pretty big and generous blessing in a way...one of those good gifts that looks like it could be something other, if you don't look carefully.

So often in life, we dismiss something hastily, thinking it's not what we wanted, or prayed for and not a blessing at all but really, if we weren't so quick to put our own meaning on it, we would see the wonders of God written all over it.  Sam is my wonder...he will be okay.  This is not how his story is going to end.

The challenge this weekend will be to stay busy and far from needless worry.

On Monday, we will experience Totality! A total solar eclipse and our little town is at the heart of this event.  It will be a good distraction for us all.  We plan to climb up on the roof with our Doritos and Diet Coke, and chill with our awesome eclipse glasses and pretend that it's the biggest thing in our life.

Some people will never witness a total solar eclipse.  I will be lucky enough to see two!  I was in 4th grade when I saw the last one.  I have the best luck...wouldn't you say?  (Don't answer that...)


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Tuesday, August 15, 2017

An Unlikely Gift

I've been thinking about gifts lately.  I haven't talked at all about this, but I started my annual 29 Gifts project earlier this month.  I'm a little late.  29 Gifts project is usually reserved for the month of January but when January came, I didn't have it in me to even think about anything productive.  I thought I would tackle it in February.

February came and gave way to March...and now it's August.

And while I haven't been documenting my projects as I have in the past, I've been busy giving.  I've been busy receiving too cause that is what happens when you give; you get ten-fold back.  I had a little help from a friend for a few of the days, some of the bigger things.  We made care packages for the Huntsman Cancer Center, Madison.  Last week, I delivered a ton of school supplies to The Haven in the city; a homeless shelter for women and children.  There have been smaller gifts but still significant to me, in between.

Tonight, on my way home from the gym, the sky was a moody mix of deep, vibrant colors and shades of grey and the clouds billowed and bulged and behind it all, the sun was settling down for the night.  I felt both lonely and content.  I don't understand how that happens so much.

We've covered some emotional ground the past few days.  Bad news, birthdays and everything in between.  Nothing has changed but everything feels different and distant yet we remain standing where we were just a few days ago when it all felt so impossible.  Maybe I'm noticing things I hadn't before...gifts.

It was a gift that my sister could spend a whole week with us.  We did nothing fun because I had to work so much but just having her here was awesome.  I don't realize how lonely I am until there's someone around to talk to.  My kids love their Aunts and Uncles so much!  You would think they were their best friends when they finally get to spend a little time with them.

On Sunday, my brother texted me a beautiful message.  I rarely talk to my brother.  Not because we are fighting or anything, just because we let life get in our way.  I was so surprised by his words that I texted him back..."Are you feeling okay?"  Ha ha. I love him so much and I wish I could see him more often.  He is a gift and he even called Shelbie to see how she was doing.

Sam is managing life incredibly well.  He has this little disorder called Dyscalculia.  It's a learning disability and his brain processes in ways that few people experience.  He is one of the most perceptive people I know.  When I need to remember how something fits together or the fine details, I just have to show Sam and in seconds, he's got it!  He doesn't however process time passing or remember things, especially things like the details of his health.  This has proven to be an odd gift this week as he is able to shift from being completely terrified and overwhelmed to finding his old groove and moving ahead like nothing major is about to rock his world.   He is happy and he is working as if nothing happened last week.  

Spencer is moving to Utah in a couple of weeks.  That's not a gift!! But, in thinking about how much I don't want him to leave I remember what a gift it has been to have him at home for the past year.   He brings so much to our family.  He can be the voice of reason for Shelbie and friend for Sam.  He is my temple buddy and goes the extra mile helping me with whatever.  He is thoughtful and kind and doesn't let life slow him down.  He has spent the last year learning so much with videography and doors are opening up for him.  His learning is paying off.

Last week, I mentioned about the man I met at the Corn Dog truck.  It was an opportunity I wasn't expecting and really, it was a gift.  I'm not one to voluntarily talk about religion.  I'm not one to invite a complete stranger to my home.  Somehow, that all happened.  He had so many questions about the Gospel that I believe in.  He has read the Standard Works, memorized the Articles of Faith and studied many more things pertaining to the LDS religion.  We had hours of conversation about things he didn't understand like prayer, revelation, life after death, life before this life, faith...agency.  In answering his questions, I realized that really do believe in this Gospel.  Without a doubt, my testimony is strong in spite of my trials and more importantly, despite my every growing fatigue and even worry.  And though it was just one day, it was an important day to me, an unexpected gift to be reminded of why I stay in the wrestle.   I haven't talked to him since then really.  He has other adventures planned.  It's interesting the people who come and go and cross our path in meaningful, albeit brief ways.

So, in the messy mix of my overwhelming days...there are gifts to be given and gifts to receive; more beautiful than you can imagine.


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Monday, August 14, 2017

Moving ahead

Last night, my home teachers came over and they posed the question...

"How do you see yourself getting through all these trials in 2 or 3 years from now?"

On Friday, our Immunologist asked me a similar question.  He gets overwhelmed at the situation we are facing with all three of the kids having extremely complicated and difficult health challenges.

 "How are you getting through this?" He asked. "I need to know that you are taking care of yourself.  Your kids need you more than ever.  There is no doubt in my mind that you are the reason your kids are still alive today.  You need to find a way to be here, healthy, for whatever is coming next."

I don't know the answer to either question.  I don't think I'm doing a very good job of getting through, at least with any degree of grace and dignity.  I don't know how we are going to get through all of this tomorrow, let alone a year from now or 2 or 5 or any number of years.   I do know that I can't think too far ahead or I am easily overwhelmed.  Right now, lots of things are suffering because I am spread so thin.  I've had a hard time keeping up with work and deadlines are passing and I'm slow to get caught up.

On Friday, after we were done all the testing, we met my niece at a mall in Salt Lake.  The kids were agitated and upset and then something insignificant happened and every one fell apart.  I had to suggest that my sister and her kids just head off on their own and we would meet them after dinner.  They left and there, in the middle of a parking garage, we melted down.  Before the melt down comes the contentious arguing and blowing up- much like a volcano.  We bubble and toil and the superficial stuff spills over and then anger ensues and they blow up and what is left behind is this gentle, almost still, pond of sadness, sorrow and even fear.  It's a humbling process to witness and almost beautiful.  Brutal...but beautiful.

I'm always relieved when it happens this way because then we can start working through the real things that matter.

Even still, I'm not sure how we will move forward.  Generally speaking, we will do what we've always done.  We will get up every day and do what the day requires and we will pray like crazy and try to feed our hope and dwell in Faith.  I guess that's the best we can do.

I wish, more than anything that I could change the work I do.  I wish I could rely on a design income instead of 6 other jobs just because they are steady pay I can count on.  Every time I consider quitting, I hear someone say that another recession is coming by 2019 and I know that I will not survive ANOTHER recession as a designer.  I dread the thought of that.  I am barely getting back on my feet from 2009 messing with me.

So, I don't really know how to move ahead.  I'm stuck and I'm tired and I'm worried...but I'm also trying to have Faith that things will unfold as needed and as long as I'm living right, we will be okay.  I just wish I didn't have to be so tired and exhausted from working so much.


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Sunday, August 13, 2017

25 years for Shelbie

We interrupt our current drama to bring you a little birthday joy and happiness!

Shelbie is 25 years old today!

She seems to get more and more beautiful with each passing year.  I think the more she is tested and tried, the more refining she endures, the more beautiful her spirit becomes and that reflects so much in her physical appearance.  I'm so proud of her.

At Immunology clinic this past week, our doctor asked if she was still working and Shelbie replied that she was.  The doctor was astounded that she was still getting up every day, making an effort to continue living her life, setting goals and moving forward.  He said, "I am completely humbled to be a small part of your life!  I have patients with some minor immune issue who have chosen to go on disability and do nothing with their life.  You have so many things wrong, epilepsy and demyelination alone is reason enough to slow down and even do nothing but you keep on going.  That is unbelievable."

It is unbelievable.  She is an amazing young woman.  I'm proud that she is actively wrestling the demons of life...and chronic health problems.  She is becoming something great!

Tonight, the kids had their traditional Sunday night game night with their friends from their Young Single Adult ward.  What a great group of young people!  She is surrounded by so much love!  It makes me so happy to see that my kids are a part of this Gospel and a strong representation of youth who strive to be good, loving people.

Her friends brought a cake and she was so surprised! 

I made a few different kinds of cupcakes and cheesecake


My kitchen has never been filled with so much dessert!  There are clearly not enough people here to make a dent in this celebration!  I gave them all orders to leave with a plate of food. 

Now, they are playing games and I will probably fall asleep tonight to the sound of 20 young adults laughing and sucking the life out of this moment and it makes me happy.



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So it goes...

We had a big day on Friday at our clinic appointments.  I was feeling a great deal of anxiety going into Sam's appointments with the new Electrophysiologist.  I have heard mixed reviews on the doctor we had and well...I've already voiced my opinion on new doctors.

However, I was pretty relieved when he came in.  He is an older guy and clearly feels comfortable in his arena of electrophysiology.  I really like his PA as well.  At first, he didn't say much and I heard the dreaded sentence...Well, Lance Armstrong... I shut him down real fast!  But, he wasn't offended.  He said he appreciated me saying that Sam has been deteriorating for the past couple of years.  It's interesting to actually see his heart function dwindle over time, on paper.  At any rate, by the time the appointment ended, we were joking around and he had loosened up enough to laugh along with our teasing.

Sam's heart rate on Friday was 37.  Dr. F had him brisk walking in the hall for a few minutes with a pulse ox monitor on, just to see how high his heart went and get an idea of how winded Sam is doing something as basic as walking.  His heart jumped up really fast to 128 but dropped even faster as soon as he stopped. In less than 10 seconds he was back down to 53 and then settled in the 30's.

We had a good conversation about telomeres, mitochondria and chiari's.  He admitted that we are his first patient with DC, Chiari's, short telomeres or mitochondrial issues, yet he was aware of each of these conditions with exception of Dyskeratosis Congenita.   He said Sam's heart is behaving like an elderly person which makes me think the telomeres are our biggest problem.

We also talked about the prospects of a pacemaker but only in general terms. Dr. F wanted Sam to do a 48 hour holter monitor test and a treadmill stress test in the afternoon.  During the treadmill test, Sam struggled to keep going.  I wasn't allowed to be in the room, (thank goodness! I'm still experiencing PTSD from Spencer dying back there last Fall.) but they had the PA in there with him the whole time.  I guess when it was done, they had a heart to heart talk about getting a pacemaker.  He asked Sam how he felt about that and what his worries and concerns were.  If that is what they determine needs to happen, it's not going to be an easy road for this little family of mine.  Recovery is about 6 weeks and that is going to be hard for Sam, the boy who is on the go.

Immunology wasn't filled with good news.  Spencer is fairing the best of the three kids.  Sam is about where Shelbie was 3 years ago.  He really is in pretty rough shape but I already sort of knew that since he catches everything that comes along.  Because of his heart complications, there isn't much we can do until a plan is in place for helping Sam's heart.  Dr. Gundlapalli is teetering between diagnosing Sam with Common Variable Immune Deficiency and Selective Variable Immune Deficiency.   He said that soon enough, he will most certainly be CVID.  He wants to hold off on Plasma transfusions as much as possible because it's a life long medication and he's so young still.

  Ideally, he wants to see if daily antibiotics keeps him healthier but the medications he would want to use affect the heart and liver so that may not be a good option right now.  We are in a holding pattern for a couple of weeks.

For now, we will watch Spencer closely.  And Shelbie?  She had a seizure while we were in the room. Dr. G is such a tender hearted doctor, he was really good with her and helpful in calming her down.  I don't know what I would have done without him there.  I think he knows more than our team is letting on because he kept saying that the plasma will not only help her immune problems but her demyelination problems as well. I haven't heard anyone tell me she has demyelination issues.  I skirted around that issue.  I have enough to worry about right now.

Friday just wasn't a good day.  We had an impressive melt down as a family Friday afternoon.  This life of ours is taking a toll. It's been upsetting to watch the kids go through this.  There are going to be some hard days in the near future.  We go back soon for GI check ups- Spencer is losing weight and mass.  He's down to just barely over 5%  body mass.  Sam's eyes are yellow and I can't keep putting off his liver issues.  We see our heart doc next week and I anticipate a decision will be made about Sam's heart.

I feel like I'm quickly running out of space to do anything but all this medical stuff.  Any extra stuff overwhelms me.

But, today is Shelbie's birthday!  25 years old.  That makes me one old mama!


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Wednesday, August 9, 2017

Electrophysiology

It's been a mess trying to get this appointment for Sam lined out.  They had us booked for a Friday afternoon appointment but I was so upset when I found out it was going to be with the same Cardiac Electrophysiologist that Spencer has.  I am not super happy with him.   When I hung up the phone with the nurse, I immediately felt anxious.
A short while later, she called me back to say that doctor decided he couldn't be in clinic on Friday so she wanted to switch us to someone else but first she had to get all the docs to review his chart and decide if they would take us on...and get permission from the doc we had our first appointment from to switch teams.  What is that all about?  I thought we lived in a 'free' country...or something like that.
Late this afternoon, the nurse confirmed that one other doctor agreed to take Sam's case.  I'm still not feeling very settled.  I hate new doctors.  I hate the rehashing of history.  I hate the getting use to bedside manners.  I hate it all.

I am so tired of the run around with these heart issues.  Our Cardiac docs have not been very good at listening or considering all the issues the kids have.  They have been narrow minded and only thought of the kids as 'healthy', run of the mill, young adults. This results in stupid comments like, "Well, Lance Armstrong has a low heart rate."  They like to think that a low heart rate in a young man is a sign of an active, healthy, athletic person.  My kids are young and fairly active but no where near elite athletes and as far from healthy as one can venture.

There are so many serious points to consider...My kids have short telomeres.  Telomeres protect the ends of the Chromosomes.  They also have many clinical symptoms of Mitochondrial disease. The mitochondria gives energy to the cells, especially the muscles...the heart!  I'm not sure what the repercussions would be in putting a pacemaker in a heart that is dying due to short telomeres or mitochondrial issues that don't provide enough energy to the heart cells.  It may actually end up overworking the heart and increasing problems and not solving the bradycardia at all!

Then to add to the mix of puzzling thoughts, his Chiari Malformation in his brain that can actually be the cause of bradycardia due to increase cranial pressure.  So, if we put a pacemaker in and disregard his brain problems, we aren't going to fix anything! I feel like we aren't going to have answers anytime soon.  In my perfect world, we need to take a closer look at what is happening with his brain before we make any decision on his heart.  And then there is his liver...Ugh!! I can hardly wrap my mind around everything that is happening to us this week.

It's complicated and I only know enough to know that I need to be very concerned.  I really, really hope this doctor knows enough to actually do the right thing.  I am praying that I like him.  I am praying that I like him so much, I can switch Spencer over to him and we can start making progress with Spencer and his heart.

At work, one of Sam's bosses has really taken him under his wing.  He invites him to go boating with his family.  Recently, his boss was diagnosed with a heart problem and is wearing a heart monitor around until he has his pacemaker consult this week in Utah too!!  What are the odds?  Of course, Sam says nothing to anyone about what he is dealing with, except his good friend that works with him.  Tonight, his boss was talking to him and Sam brought up his heart monitor and then told him that he is going for a pacemaker consult too.  His boss was floored when found out all the problems Sam has.  I'm so glad he has an open mind...I have worried that if they find out how bad off Sam's organs are, they wouldn't let him work there.   At least I hope the guy has an open mind.  It does seem like it is one thing they have bonded over.  We'll see.

The strangest thing happened to me today...I met a man who is here in town, visiting from Texas.  He recently retired as a contractor for NASA as a software programmer for the astronaut program! He is here to complete part of his bucket list and see the Total Solar Eclipse.  He has even volunteered to help the city during that time.  One thing led to another and he ended up coming for dinner! Yikes!!  I get myself in the strangest situations.  I rarely invite people I know to my house, let alone for dinner! He is a fascinating man.  I spent over two hours talking to him about God, prayer, revelation, religion, poetry, music... After dinner, he served the dessert and then did the dishes!  Washed them by hand even.   I'm still trying to figure out how all that happened!  More on that story when we get through this heart stuff!

If nothing else, this blog is stranger than any fiction book you will read!




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Sunday, August 6, 2017

Family

The timing of my sister coming has been great.  It's just what the kids needed.  It's just what I needed too.  The kids rarely get to see their cousins from my side; a country divides us. My niece and her friend were coming down for Especially For Youth at our local University so my sister came to spend the week as well.

As for our latest setback.  I did hear from our doctor late Friday and University Hospital is trying to juggle their schedule around to fit Sam in on Wed, Thurs, or Friday coming up.   Never in my life, did I think I would be asking and reminding my kid to have another Red Bull or ask how many Mountain Dew Kickstarts he had.  It feels so surreal which is so strange since I have known this day may come.  It just came sooner than I had hoped.

My niece Kira and Shelbie

Kira and Spencer goofing around.

Sam needing a ride from Shelbie on the scooter. 

Friday night, we went over to the clubhouse for a little hot tubbing...We had it all to ourselves and it felt so good on my tired bones! 

We also took a short drive to the most beautiful Mesa Falls


My sister and I at Mesa Falls.  We both stink at selfies but it's a fun picture.  
It sure is nice having family here.  We have had some good talks, both of us needed to unload the weights of our world.  The kids are laughing so much and having fun.  It's been the best distraction for Sam.  He goes from just fine to freaking out in seconds and completely unexpected.  I know it sounds strange that I'm glad someone is here to help with my kids...it's not like they are troublemakers or toddlers...just to have someone else to keep their spirits up is helpful.  I"m so tired.

This week, I will be trying to cram in a week's worth of work, if I can even focus...and trying to prepare for some hard doctor appointments.  I suspect this week, Sam will also get the official word that he will start plasma transfusions.  A big week!!


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Friday, August 4, 2017

Broken Hearts

I did not see this day coming!

I had made an appointment last week for Sam to see a new doctor here in town.  His dizziness has been getting worse.  He is going on a month or more of this.   He has been at the Chiropractor for 3 weeks in hopes of helping his neck pain which I attributed to the cause of his dizziness.  It has not been helpful and the Chiropractor was a little perplexed and sent Sam for an x-ray two days ago to determine why he isn't getting better.

 The past three days, he has done nothing but sleep all day long or lay around on the couch.  Sometimes, it's hard to tell the difference between bored Sam and sick Sam.  When Sam is bored, if I ask him to do something, he grumbles and complains.  When Sam is sick, if I ask him to do something, he quietly gets up and does whatever I asked of him.  He hasn't been grumbling and complaining this week so something is wrong.

This morning, we went to the appointment.  Right off the bat, things weren't progressing as they normally do at the family doctor.  The nurse calmly said, "Does your heart rate run low?"

"Yes."
"Really low?"
"Yes, like in the 40's"
"Okay, just a minute." the nurse leaves the room

She comes back in and starts running Sam through the orthostatic blood pressure checks.  I know this because it's the same thing Spencer had to do.  I can tell she is still not happy.  She leaves and comes back in with another nurse and they announce they are doing an EKG.

"I already know his heart has issues, do we need to do this?  It isn't going to tell us anything we don't already know.  I just don't want to pay for something that isn't necessary."

"This is necessary. His heart rate is only 33 -34 and we can't get his blood pressure up. It's pretty serious."




So, we go into funny mode because apparently that's how we handle situations like this; find something funny to laugh about.  That helps, at least until the wee hours of some night when I find myself doing the laugh cry routine because everything is so overwhelming.

Even when the doctor finally came in, I was so bugged that  we weren't addressing his neck pain and dizziness because I am worried he has a blockage of cerebral spinal fluid so I keep coming back around to Chiari's and all that.

He finally had to say, "Ok.  I understand you are worried about that but right now, his heart takes precedence.  He needs a pacemaker.  I'm not a cardiologist but I know when someone is in trouble and your son is in trouble."

Geez....Here we go!  The next crazy thing.  Seriously?  We can't just take a few months to adjust to our Epilepsy thing?

He asked if we could leave this morning for Utah.  He knows two Electrocardiologist at the University Hospital and his experience is they waste no time.  I said, "No.  Not today, but we will be there next week for testing so could we do it then?"

He was a little perplexed that I am willing to wait a week on Sam's heart.  I guess, the problem is, my fight and flight mechanism doesn't work anymore.  I am so use to living life on high alert, I don't even react appropriately to things now.  The doctor wasn't a big fan of me I don't think but I won back his love when he found out I feed my kids Mountain Dew Kickstart for Breakfast!  He actually advised that I increase his caffeine intake to 100 MG day and night.

Just to clarify, I'm not that much of a loser of a mom for giving my kids a caffeine laden breakfast.  Sam has processing issues similar to ADD but it isn't ADD.  The ADD meds had too many bad side effects so we self medicate with caffeinated drinks which helps him a ton.  Sam with the other two but not to the extent.  

Anyways, the doctor wants me to do anything I can to keep his heart stimulated.  Sam's liver enzymes are high again!!!  I just know we are headed into liver problems next.  He's been a year of yellow eyes off and on and bilirubin up and down.

As we were getting ready to leave, I asked, "Just out of curiosity, is he at risk of dropping dead?" Do you like how I mince words?

"Well, that sounds dramatic and I don't like to be dramatic but he needs to be careful.  He needs to rest more and watch his activity level and definitely don't stress his heart."

So, I'm a little blindsided and a lot nervous about him getting a pacemaker.  I'm just not sure how all of that is going to affect his venous malformations, the blood that is shunting outside of his heart...etc. Of course, the cardiologist gets the final word so maybe the plan will change.  But, here we go!  I'm so heartbroken that it has come to this for Sam.

Sadly, he is a little upset so guess where he is?  My kids don't take bad news sitting down!  He is at the park slacklining, then going bridge jumping, followed by work until after midnight!  I begged him to please not do all that today and I got the answer I always get..."No.  I don't care if my heart stops.  If I die, I want to die having fun."

Ugh...these kids!  They scare me to death.  I have no choice but to let him go and hope for the best!

Today, Shelbie has lymphatic fluid leaking profusely from her still swollen leg.  I don't get it.  I'm sick of trying to figure this out.

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Wednesday, August 2, 2017

Schooled.

Tonight after work, I stopped to get the mail and my little neighbor friend was out on the grass playing with his pal.
I said,  "Hey! Are you having fun playing Star Wars?" I was only guessing because they had those light thingys.  Then I said to the friend, "Are you Darth Vader?"

His reply to me was, "No!  Don't you know anything?  I'm not Darth Vader, he is.  Why would you think I was Darth Vader?"

This six year old rendered me speechless!  Then the two of them started arguing about Rogue something and CP, D2...I don't have a clue.  I watched Star Wars in 1979 or something and didn't pay much attention then and could care less now.  I just stood there, til I realized my mouth was gaping and watching 6 year old boys argue was the highlight of my day! "Okay, well, have fun!  Don't fight, sorry I asked."  LOL...and drove off.

A couple of days ago, Sam came into my office in the early afternoon and said, "So, what are you up to?  Are you hungry?"

"I'm just working.  Nope, not hungry.  How about you?"  I asked.
"Ya, starved.  I wondered if you were going to be making lunch or what's the deal?"

You know I can't resist a question like that!!
 "Oh shoot, while you were away at school, we underwent some Corporate Restructuring and sadly, we had to let our Lunch Lady go.  I wasn't sure how to tell you the news.  We all miss her...deeply."

"So...no lunch?"

"Well, I mean cutbacks are cutbacks.  Everyone's feeling the pinch these days.  I think the Lunch Lady left some easy to grab snacks you are welcome to...Goldfish crackers, a half a bag of Chow Mein noodles- the good kind, and there are some Cornflake crumbs as well.  Just don't fill up on snacks since dinner will be in 3 short hours."

Sarcasm is our second language here and it's so fun.  It's way better than a solid 'NO'.  As Sam hung his head,  he said, "Could you at least ask Corporate to send us a loaf of bread and Bologna?"

Ha ha ha..."Okay, I'll see what I can do."

So, poor kids are starving around here.  I haven't had a second to grocery shop but I finally did yesterday and told them to write down what they wanted on my list.

I think I may have to bring the Lunch Lady back...their lunch items are DISGUSTING!!! AND have been banned from this house for 25 years!  Tuna?!  Barf.  Guacamole?  Ugh.  Bologna?  Fish... Bleh.

I hate processed foods, and fish and tuna are the worst!  It is disgusting.  I even question if it's really legitimate food. Spencer is still going strong on his Keto diet which is just protein so he asked me to buy fish and cook it for him.  I have never in my life cooked fish because I hate fish but I'm also a dutiful mother so tonight I made him some grilled Cod.  Seriously, so much for sleeping.  My bedroom, which isn't far from the kitchen smells like a fish market in Seattle.

How do you even know when fish is cooked...it's the same color raw as it is cooked?  That's dumb.

Guacamole?  Never made it in my life so Sam told me to get this processed stuff so I did.  Today, he realized it wasn't even made with real Avocados and he felt cheated in life.  Guess who will be learning how to make Guacamole from scratch?  This girl!!  (insert eye rolling)

Well, this is a random post.  Life is just a mystery to me and I've decided to ignore all my problems in lieu of sarcasm and starting fights with 6 year old children minding their own business.  It's going so well!

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Out to the porch

Today was an impossibly long and difficult day! It was move in day for Sam.  He got out the door way before I was ready because he wante...