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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Sunday, July 30, 2017

An Essay on Empathy

Empathy.

 Quite possibly the hardest, biggest, most convoluted word in the English language. It's a concept I became painfully aware of in 1999, when I realized, my world was not going to resemble the world I had conjured up in my teenage, dreamy, mind of happily ever after.

It was a time when I was facing the diagnosis of the kids, at least what was the official beginning.     It's a word that has provided me with hours of sorrow, frustration, anger, regret, confusion and even
resentment. At the same time, I found respite and care in the word.

So, for 18 years, I have studied and pondered to extreme lengths about Empathy and still today, it can be elusive.  Still today, it isn't second nature for most people, me included. For instance, when someone sneezes, people instinctively say, "Bless you!"  Except...last week, I was at the grocery store in line, and the guy behind me sneezed.  He blessed himself!  I actually felt shame and guilt for not stepping up to bless him myself...except I never do that!

Anyways...

Here's what I have learned about Empathy.  I guess I thought it was finally time to put my thoughts on paper.  For the past month, I have witnessed some tragic and hard things and it's difficult to know what to say, what to do, how to act...And when our lives nudge the life of someone who is experiencing overwhelming trials, excruciating sorrow in unreal circumstances, heartache, grief, depression, it's hard to know how to navigate that with them.  Sometimes, it's just easier to turn around, cross the street and find a different sidewalk to journey down.

Sometimes, all we can think to do is make food.  I live in a culture where food seems to be the hallmark symbol of empathy, and sometimes, that is the best answer.  Sometimes, that is the precursor we offer when we really do want to be connected but aren't quite sure how to do that.

I will never forget an experience I had when Shelbie stopped breathing when she was two weeks old.  After the dust settled, a girl from my ward showed up on my apartment steps.  She was the most timid, shy person you could imagine.  She was plain and almost invisible. I hardly knew her, had rarely spoken to her. She handed me a quart of chocolate milk but it was expensive chocolate milk.  It is made locally and tastes like a chocolate milkshake and is nearly as thick.  In her quiet little voice, she said, "I don't know what to say to you and I guess I just wanted to say that much.  I'm just so sorry that your heart is breaking."  She handed me the milk and that was it.

Those words were powerful and helped me more than any other means of help I got during that time.  She was honest and showed up.  She saw me and she let me be seen.  Sometimes, all you need is to be seen.  All you really need is to have your struggle, whatever that is, witnessed.

No one teaches about Empathy better than Brene Brown...I love this short video she offers on the subject.  Let's just start here.

 

Here is my list of inspiring thoughts on empathy and how to help in times of need that is different than casseroles.


  •  Early on in my journey, I read a book called From the Heart- On being the mother of a child with special needs.  It is chapters and chapters of moms writing about all subjects regarding the care of a chronically ill child.  One mother wrote this...incidentally, her name is Kathy.             "It's an accumulation of well-meant but inappropriate comments about our kids, comments that invalidate the pain and frustration of these more than challenging children."     It's okay to not know what to say.  It's okay to admit that.  Just show up.  Nothing you say is going to change the situation or circumstances.  No amount of silver lining will make it better.  Saying..."They are in a better place.", "At least they aren't suffering anymore.", "They were needed in Heaven."   That does nothing but make you feel better, not the person who is facing depths of loss that you will never understand.  So, say nothing but show up and share their sorrow. 
  • Never arrive on the scene of suffering with a plan.  Never initiate a course of action.  Show up with the intention to sit with them...even in silence if that is what the moment requires.  Maybe show up with Kleenex...the good, soft kind.  That can be helpful too. 
  • Respect their privacy.  Respect the times when they need to pull away and retreat into themselves.  There is healing in these moments too. 
  • Ernesto Sirelli- a Philanthropist says, "Small is beautiful."  Sometimes, the smallest act of courageous empathy is the most important, the most needed, the most beautiful. 
  • Grief is suppose to be sad and hard and full of unpleasant emotions that can take us on detours we never expected to take with our feelings.  Don't be afraid of those dark places.  It's down in the valley, where the streams meet and feed the mountain flowers, and the banks of the rivers are green and teaming with life.  Down in the valley can be a rich place to stop and rest. It can be a holy and hallowed place.
  • Do not judge or criticize how a person is managing their difficulties and stresses.  You haven't been where they have been.  Your perspective, is not their's. Don't make their suffering about you.  Even if your best effort goes unnoticed or even unappreciated, let's give everyone the benefit of the doubt.  None of us are very graceful, even on a good day and when bad days come, we can all be a little clumsy.  Be kind.  Be gentle.  Be understanding.  If you can't be those things, quietly step aside.  Maybe the person is more than you can emotionally take on and that is okay too.  
  • No matter how detached or prickly a person may seem, we all want to feel connected.  We are all even desperate for connection but for whatever reason, pulling away is less scary than being vulnerable to let others see the pain we guard so carefully.  It's easy to be offended and pass judgment and wring your hands and say, "Well, I tried.  It serves her right if she doesn't want help."  I'm guessing, she desperately wants help but doesn't know how to be okay with help.  Meet them where they are.  
  • Don't make the person who is suffering tell you how they need to be helped.  They are probably barely keeping their head above the surface of the raging waters that threaten to drag them under.  When you put that kind of pressure on someone, they will just feel like you are one more person to take care of instead of being cared for at a hard time.  It's a natural thing to ask and sometimes it is appropriate to say that but tread carefully and thoughtfully.  Again, maybe it's better to just say, "I'm not sure what I could offer at this time to change things."  It's the connection and showing up emotionally that  matters most...the physical acts of service and love will be made known as you go through the trial with them. 
  • Times of suffering probably aren't the right time to share your multi level business venture with them.  Gogi juice, magnet beds, foot zoning probably isn't going to heal a dying child. (that might sound harsh...but it's true!)
  • When someone allows you into their world of sorrows and grief, consider yourself blessed.  You are standing on holy ground when you share a moment of pure love and empathy in the way God intended.  You are an Angel on the most Holy of errands.  Remove the shoes from thy feet; as God said to Moses. Be reverent.  Be respectful.  Be still and God will show you how to bless them.  It is a privilege to shoulder the burden of someone.  I can't speak enough to this point.  In fact, I feel this so deeply, I can hardly find the right words. 
I love this quote by Michael Schreiner-"When the storm is raging, sometimes just having someone in the boat with us is all we need to persevere.  They don't need to change the storm, they can't change the storm.  But, they can offer solidarity and hope, they can act as a powerful bulwark until the storm eventually subsides."

Taking a journey with Empathy takes a great deal of courage.  Often, it requires us to completely change our viewpoint of suffering and sorrow.  It's a process.  It can be hard and painful and requires hours of practice.  I still find myself in situations when I don't know what to do or what to say for someone in suffering.  

I appreciate the efforts people have made in my life to show up.  I know we have an overwhelming situation.  I know I am not an easy person to reach emotionally.  I have years and years of wall building behind me.  When people ask me what they can do to help, I'm at a loss too.  

Life is hard and getting harder for everyone!!  God is trying his people at alarming rates in magnificent ways and without apology, God sends his children in the fire of refinement.   You don't have to look very far to find someone in a worse situation than you.  

I'm not writing this because I think I have all the answers.   I'm writing this because in a world of brief connections and social media smoke and mirrors that make us believe we have all sorts of friends- we need to be reminded that we really do need to be a friend.  A real friend.  A warm body.  A hug.  A smile in person, not a thumbs up! 

This afternoon, my friend climbed in my boat and together we bobbed over these waves of life that drown our sorrows but there she sat, like it was no big deal at all...but it was the biggest deal to me!  That's all it takes really.  It really is that simple to care for one another.  






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Saturday, July 29, 2017

Doing Epilepsy in Style...and other news

Shelbie's epilepsy monitor came in the beginning of the week.  We still haven't started the medication yet...I think Sunday we will start.  I really wanted to get a few days with the monitor and see what a typical day and night is like for Shelbie with the monitor, no meds.


It looks nice enough, kind of like a smart watch and it's pretty darn smart!  I love the name of the device...Embrace.  What exactly are we embracing?  Epilepsy?  Embracing periods unconsciousness without the commitment of death?  I mean...that's something to embrace I guess.  It's important in times like these to look for the silver linings. This company is winning at silver lining things cause I feel so much better about things now that we can embrace it.

She has had two significant seizures but did not lose consciousness.  It monitors everything!!!  It monitors how much time she spends in various stages of sleep and how active her brain is.  One night, she tossed and turned 173 times!!  Good grief...that's like a cardio workout or something!  Maybe she didn't really have a seizure that night...the monitor was just shocked when her brain and body went silent.  That's just wishful thinking.  It was red flagged.

Thursday night, she was with a group of brand new friends from her ward.  They know nothing about her really, especially that she is sick.  They went out to Texas Roadhouse and she had a seizure.  Her head fell off to one side, she couldn't speak, she was 'zoned' out as it was reported to me and when she came to, she wasn't sure where she was or how she got there.  So, to say the least, Thursday night was rough.  They all came back here for a movie but we had to start her plasma so then they were freaked out even more!   Way to introduce yourself to your friends...I mean, really...how cool that she got to experience a seizure at such a nice restaurant?  Lucky if you ask me!

Enough of Shelbie...

Spencer got home super late last night, slept a few hours and the boys left to help there dad do some things in Utah.  Poor kid had to turn right back around and drive back to Utah.  I worry about him.  He's happy though!  He got to be an assistant to the main videographer for James the Mormon... a Mormon rapper.  He has learned so much and he has been in the presence of some pretty well known cinematographers and videographers this week.  He also worked for a fencing company and made a little money and all with his heart that's giving him fits and more weight loss.  He's freaking me out!

Sam is starting to be a big problem.  I think I have mentioned his dizzy spells and neck pain.  I took him to the chiropractor to see if some ultrasound and alignment would help.  He's been three weeks and he's actually getting worse.  We had a good talk last night. He is dizzy when he lays down at night, rolls over, stands up, sits down...all the time really.  He hasn't lost his vision in a several weeks which is great!  I'm worried that his brain situation is escalating and he's getting a blockage in the flow of the cerebral spinal fluid.  I guess we will hold out until our next round of appointments next week.

Every day is an act of Faith.  Every day, I just have to be brave that whatever happens, it was meant to be.  I know that in my heart and that should eliminate all worry and fear but sadly, I'm just so mortal.  That sucks!  I could be such a great person if I wasn't so abnormal and mortal and broken.   Oh well...all I can do is make sure that every day is a day lived without regret.

In a way, it's a nice way to live.  To live like everyday might be your last means, you don't wait to tell people important things like how much you love them.  You exhaust the little moment, get the most out of life, find God in the hidden corners, accept his mercy and grace.  You decide what matters and what doesn't.  You complain less, go with the flow more.  Accept what comes.  Find a way.  Forgive quickly, ask for forgiveness even quicker.  You give people the benefit of the doubt, judge less, tolerate more.

I'm not perfect but it's a perfect set of circumstances to practice all this moment to moment living, trusting in a higher plan that is continually and purposefully unfolding.





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Friday, July 28, 2017

This Happened...

It's been a pretty busy week around here but there's always time to squeeze in a little DIY project right?

My Wasband gave each of the kids a piece of furniture of their choice.  The boys choose shelving units that are really nice and Shelbie chose a sectional sofa with down cushions...it's really nice.  Probably the nicest thing in my house even though it's over 20 years old.  The problem is, it's really big and my house is really small.

Shelbie has had her heart set on this for the basement.  I am letting her take over the basement so she feels a little autonomy.  It's not just about the sofa, it's about the memories that comes with the sofa.  Memories of family Karaoke nights, family movies with popcorn, bedtime stories, family home evenings, Christmas nights under the tree,  happy parents, happy family...all the stuff that children from divorce dream about from days gone by.

All the King's men and all the King's horses couldn't get that sofa down the tight spaces to the basement.

There isn't much I can control these days and that bugs me but I can work magic with a saw and some determination.

So...this happened one late night this week.

 I don't have a before picture, but there use to be a wall here with a 30" door.  Who designs a 30" door leading to a basement?  Dumb!  The sofa is 42" wide.  So, the top left picture is where the wall use to be.  Sam and I managed to get around the tight corner from the living room and wedge the one part of the sectional into the stairs, that is shown in the top right picture.

We had to take the railing off.  I had one job...to hold on to the sofa...It's heavy and I'm still not certain how Sam ended up underneath it, knocked on his back but it might have something to do with me but I won't can't say for sure.  He's fine! My walls, on the other hand, are not fine!

Oh look...in all this, we found JOY...it has always been here!  I should spend more time in the basement.

Anyways...I had to take the stairs apart before we finally succeeded in getting this sectional in place.
 It looks so nice and fills up the entire room!  It's wall to wall sofa and so comfy now and it almost looks finished...if you don't look around.

Tonight, I knew I needed to start repairing my madness...so I found some sheet rock left over from my forced bathroom remodel this past winter and started repairs.


This is a brand new pail of sheet rock compound...it's half full!  Worse than a bag of chips...oh well.  I just found that funny. 

More Joy!   That wall took a beating but it's all patched now and ready for paint

My sheet rock job and taping.  Tomorrow, I'll get the corner beads and finish up. 

There were holes in all these places in the wall but now it's fixed!
I love that wall gone.  It feels so open now which is weird but it does.  It was a good decision.  I know it seems extreme but my kids hardly ask for anything and expect less.  They are very careful not to put me in a position where I have to tell them 'No' to the things they want.  Even when I try to help them financially, they refuse to let me help and they work hard until they have accomplished whatever they need.  So, when I can make a difference, I will move heaven and earth and even walls to make them happy.




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Wednesday, July 26, 2017

Winning

Most days lately just feel like a struggle.  I'm not winning at anything, really.  My mantra use to"be,

Efficiency with Things, Effectiveness with People

I think this is from my early 20's when I fully worshiped Steven Covey, I had all things Covey- the planner, the books; I even gave talks to students and women on being effective.  But, that was in my 20's when I had it all figured out. 

Now, I'm not in my 20's and life has happened and happened good.  

Yesterday was a disaster in terms of effectiveness.  I had doctor appointments from 7:30 am, back to back until I walked out of my last one just after 1pm and by walked out, I mean, I literally got so angry from waiting over an hour and a half, I walked out of the exam room.  

The secretary called out on my way out..."Why are you leaving?"
"Why was my appointment at 11:30 and now it's 1:00 and I still haven't been seen?  I don't have time to sit around waiting for him."  I don't usually- rarely if ever act like that but I am tired and slammed with work and sitting in pain for nearly two hours wasn't my idea of a good time.  I really needed to be seen so I was frustrated.  

I've been so scattered.  At 3:00, I got a call from a client which I missed but it was followed by a text message, "Are you coming?"  I was suppose to be in the big city for a meeting at 2:30.  It was now 3:15.  

I thought up all sorts of creative lies to use as excuses; use the 'my kids are sick' card, I didn't get any sleep last night but instead, I just said, "I'm sorry.  I screwed up.  I will leave now if your willing to wait." She was willing to wait.  I drove the 35 miles to our meeting place and did my best to pull it together.  I spent 3 hours with her and waived my fees because I was a screw up.  

When I finally got home to make dinner at 9:30 or 10:00 and spend a few minutes catching up with my kids, I was tired but the payday came a little later when we all laid on my bed and laughed so hard at I'm not sure what...but it felt good.  Shelbie has been pretty anxious all day...I'm sad I couldn't have been home to help her, and all that anxiety kind of spilled out in random ways but it was good to be connected to them.  

We were going over her new monitor and in so doing, found out she mistakenly put my number into the settings.  I wondered why I wasn't getting any alerts.  The poor person who's number she did use was probably freaking out when they got the text message from the monitoring company saying, "Shelbie has selected you to be her caregiver.  We will alert you when she needs help!"

And then at midnight, when we were winding down for the day, we did a test of the system and it sent out a text message, "Kathy!! Shelbie needs your help! Here is her location." and an attached map with the time it will take for me to reach her from where was at, on my bed.  I'm so glad we caught the error in phone numbers...some stranger would have have a lousy night!  

So, all is well that ends well.  This morning, my day started pretty early to get some things together for a presentation this morning.  Before that, I got the wild idea to load up the wall pieces I tore out and get them to the dump.  It filled the back of my car and I was wearing my little black dress!  I'm such a dork...what a sight at the transfer station...me pulling up with a wall hanging out the back of my clown car and my little black dress...so appropriate for the activity.  

On my way home to get my things for my first appointment, I stopped in at Maverick for our morning caffeine fix.  I had two Mountain Dew energy drinks, a 44 oz of Diet Coke for Shelbie and smaller one for me.  I saw a lady who is winning at life.  A good Mormon Mom, at least that is the perception from my insecure vantage point.  She sees me with my collection of chilled, caffeinated beverages and says, "Either you're thirsty or your buying drinks for the office."

"Oh, neither.  Breakfast for the kids." ha ha ha..."I'm winning at motherhood.  Gold stars for me all around today."  and then a little awkward laughter and I tried to hold my head high as I held on to my sins and walked out of there, put the drinks in the fridge for my sleeping children and a note of sarcasm..."Enjoy Breakfast!  I'll see you sometime before midnight!"  

Meh.  Life is short.  Do what makes you happy.  We are so full of dysfunction right now, it's humorous.  At my meeting this morning, my client wanted me to design a gallery wall for her family.  I was trying to get an idea of things they like as a family...I meant to say, "Do you like monograms?"

It came out..."Do you like Mammograms?"  I about died as I stuttered to actually say the right word!! 
AND...this is the same client I stood up yesterday afternoon!!  Her husband is a doctor in town and without skipping a beat, she said in all the excitement she could muster, "We love mammograms!! My husband especially loves mammograms!" We were laughing hysterically.  She might actually be client of the year!  She has been the best sport and I am a fool.   This job is actually going to end up being a free one because of all the ways I've messed up.  Oh well...

There's your feel good post for the day!  Now, get out there and be a winner too!  The world needs more winners like me! 

I'm off to see how many people I can continue to disappoint and embarrass. 





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Sunday, July 23, 2017

Sounds of Contentment

Without a doubt, the last few weeks have been a messy time for us.  Kind of out of control, sad and messy and sometimes I worry that I am not writing enough about the really good things that happen.

Every day, good things happen and I am blessed to usually see those good things and despite the drama of sad things, we laugh a lot around here.

Yesterday, I was blessed to spend just a few minutes with 'Little Miss'.  She is a half sister to my kids.  I call her Little Miss and she calls me Kat and sometimes, I think she is my best friend.  She is so smart and has the sweetest disposition.  If truth be told, she is always saying nice things about me..."Your hair looks great today Kat!" so what's not to love about having her hang around?

 Yesterday, my Wasband was helping Spencer move a desk and stuff over from Spencer's room at his dad's and she came along to help.  She really comes to spend time with the kids but since they weren't around, she got to spend a minute with me.  I love to spoil her.  I say to her, "Ask your dad if you can have some chocolate."  Of course he says "No" because dad's think it's so important to show authority but Kat?  Kat says..."Goody!  Hold out your hands!" and then I pour handfuls of M&M's til her little hands can hold no more.  Then, her dad growls at me and Little Miss and I laugh and laugh!





Sam moved home this week.  Oh how I have missed that boy!  I am a way better mom now that GIFs exist.  I pretty much communicate with Sam in GIFs.  Before GIFs I would send him sentences written just in emoticons, which he hated and that's why I did it...You know, to show him my love.

We have had to discuss curfew...He thinks he is an adult...I think he is still my little...Here is our latest string of text messages.


So, I told him curfew was 1 am.  His reply was "I know, I know." But of course, what mom is just going to leave it at that so I send him that Judge Judy GIF and actually, it's animated and she's tapping her imaginary watch. We go back and forth...It finally ended with him sending me a chicken running around 'screaming'.  We have a good time.  I especially love it when he comes in to tell me he is home.  Lately, I've been laying there awake at 2 am...because he's always late (he always lets me know he will be late...so I guess that's good.) He doesn't know I am awake because it's pitch dark so I wait for him to poke me and then I say some unsuspecting thing and he always ends up mad but a happy mad.  He's a good kid.  I'm glad everyone is home.

Yesterday, I felt pretty tired and lousy but I got a huge task accomplished...Organized the medications.  I have been dreading all these new meds the kids have to start and I need to be organized.  These new ones have a strict schedule.  I had some in bins, some in cupboards, some in baskets, some in the hall closet.  These are all current and necessary meds.  When all pulled out, they fill up two counters.


 It took me over two hours to get it all figured out.  I have a good system now for all the IV and plasma supplies so I feel settled.

Oh, this was an amazing thing...Dr. Gundlapalli texted me out of the blue, concerned about the kids.  He moved our August 24th appointment to the 11th. When he heard that Shelbie has Epilepsy, he is going to increase her plasma dose again which is never easy and means longer transfusion time but I know it has to be done.  My sister will be here which is a bummer but hopefully she won't mind a field trip to the Great and Spacious State of Utah.  This doctor has 3 or 4 medical degrees and a Doctorate degree in Philosophy.  I love him!  He is so kind and thoughtful.

To wrap up the week, I had my Saturday night tradition of sitting by the fire to decompress by myself.  Shelbie and her new friend were going to come out and join me but boys showed up and well, you can guess that meant the young men became way more interesting than the mid-century mom in her camo leggings roasting marshmallows alone.  Ha ha...I love this life even though at times, it may not sound that way.


Tonight, the kids are hosting a YSA game night.  There are so many young adults here and my house is filled with laughter and joy and that makes me happy!  I'm going to call it a night and spoon with the dog and fall asleep to the sounds of my kids enjoying a moment without a care in the world.

Shelbie's monitor comes this week.  I lost two big design jobs I was suppose to start tomorrow but I think God knows, I need a little break to figure out our new normal of monitoring so it's all good.  He's got this.  Spencer got a job in Utah this week!! Just out of the blue and a kid from church thinks he can fix his car for him and it won't cost as much as he has been quoted.  Spencer will be building fences in Salt Lake for a few days so he's pretty happy to have something meaningful to do...but he is suppose to start his new meds for his heart.  He needs to be monitored while he gets them started because they could drop his heart rate too low so he needs to be on them for a few days to see how he will respond...I guess we will start when he gets home.
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Saturday, July 22, 2017

The Art of Insanity

One thing I hear all the time...All. The. Time!!

"Well, what else is new, at least you are use to this."  This is the comment when people find out we are still dealing with 'stuff'.  Health stuff.

NO.  We aren't use to this.  We will never be use to this and if anything, every day is getting harder.

The worst part is, half the time we don't realize the toll this is taking until it all explodes in a completely unsuspecting moment.

Sometimes, those moments happen in a hospital parking garage at 3:00 in the afternoon when people are coming and going but there you stand in the middle of the road, falling to pieces and unable to form a logical thought.

Not my finest moment.  After 10 minutes of melting down, I was able to call Spencer for help.  He had just driven off after his appointment to come home.  I had parked my car just three cars down from his but it wasn't there.  I ran up and down the two aisles of the hospital parking garage and my car was nowhere to be found.

I was in a panic and so confused.

He came back and found me and still, it took us 10 minutes of driving around before I found my car.  Even the panic button wasn't working to help me find it.  Finally, I opened the map on my phone and because I have Bluetooth, my car location showed up on the map and that is how I found it.  We had both forgotten that in the middle of our hospital visit, I had moved my car...Long story!

Anyways, it's times like this when I realize just how little we are holding ourselves together with.

This was my first time back with Spencer to Cardiology since I watched him die last Fall and be brought back to life.  He has had many appointments but each time, we had conflicts with the other kids and their appointments so Spencer went alone.   Earlier in the day, Spencer asked if I was going to be okay going back to the room where it all happened. I didn't think it would affect me but it did.  It did even before I stood in the middle of the parking garage where I couldn't make sense of my life.

It was a hard day!  Spencer has lost 8 pounds!  He's been lifting weights and when he does that, he usually puts on a ton of weight but not this time.  It doesn't make sense.  I'm a little nervous about where things are going with him.  When he took off his shirt to get the EKG, you could see every muscle in his body.  He looked ripped!  I mentioned that to him.  He reminded me that he has not one ounce of fat left so all you can ever see is muscle and bone.  That gave me a completely different perspective.

It was hard to see a half a ream of paper with his heart beat printed on it...several sheets of notes when his heart was not beating regularly.  We are going to keep trying medications.  They changed the parameters of the recorder because they think they are missing data from when his heart rate drops.

I asked about a pace maker and he said, "We only consider a pacemaker when the heart rate is too slow, below 60 bpm, even 50 bpm."

"So, you have pages and pages of data when Spencer's heart rate is consistently in the 30's...we don't have enough data yet?"

And then the classic response...."Well, Lance Armstrong had a resting heart rate in the 40's."

Great!!! Lance Armstrong isn't my son!  Lance Armstrong still had a heart rate 10-15 bpm higher than my kids.  Lance Armstrong was a conditioned athlete!  My kids are just trying to climb the stairs to get to their bedroom at the end of the day!

Or...well it's normal for your heart rate to be a little lower in the morning.  40 bpm lower?

I'm not buying it.  I told him we would do three more months of medication and if the picture doesn't change we start to see improvement than we either need a new doctor, a new plan...something but we aren't going to keep playing this game.  The doctor seemed okay with that.

Still...I'm not okay with it.  It's frustrating.


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Thursday, July 20, 2017

Abundance

Every day is full of surprises!

Every day, I have learned to find God in the most unsuspecting places.

Every day, I lay in bed and wonder how such a place of heartache and suffering can be so beautiful and sacred.

Last Saturday I was at Walmart with Shelbie and Sam.  I ran into an old acquaintance.  We were in the same ward probably 18 years ago.  She had a baby who was born with Downs Syndrome and I remember her grief.  Her husband held, what I perceived to be, an important position at the University.  They were very well known and very well respected in the community.  They were, by all of the ridiculous social standards, the perfect family.

When their son was born, it shook their foundation, as one could imagine.  I remember spending time with her listening and trying to help them cope.  They moved out of the area shortly after this event.

Saturday, it was good to see her.  She was with her son.  She came up to me and put her arm on my shoulder and said, "Do you remember me?"

Of course I did.  "I never had the chance to tell you that you gave me the best advice I ever received when my son was born."

"I did?  I'm not sure I remember what that was?"

"You told me it was okay to cry and how much love he would bring to our family.  You were so right!"

When we left, Sam couldn't stop laughing his head off and telling Shelbie..."Did you hear that lady? She said mom gave her the advice to cry!!"  Those two were laughing so hard..."Nice one mom!  Way to inspire people!"  We had a good laugh.

What they didn't realize is that this family was thriving in their perfection.  The community had set them above any realistic standard.  They were afraid to grieve when their entire world was looking at them and how they would manage this.

Saturday for me, was a really hard day.  My brief encounter with her was not by chance.  I needed to hear those words for myself.  When we got home, Spencer could tell I was struggling and said, "Mom, I think you need to go lay down for a bit!"

That moment was abundant with love, tender reminders from people so long ago.  Crying and sleeping was exactly what I needed to do Saturday...to just let out all the unspoken sorrows in tears. How beautiful that Heavenly Father saw fit to remind me of something so many years ago.  Incidentally, my friend is thriving!  I have always been so impressed with the way she handles her life.  She has spoken at many events that I have listened to over the years.

Yesterday, I got to go visiting teaching.  What a blessing it is to enter the homes of three sisters and share their load, their own personal challenges.  What a blessing it is to learn from each other and share experiences.  They each have their cross to bear, hard things they are facing, doing, experiencing.  It felt like an edge to lean upon...a place to rest;  holy moment when you remember why it is you do what you do and the divine creation of mothers.

When it was nearly all said and done, I got a call from a client.  I met with them at their home and was gifted an amazing, thoughtful gift of money, more than I could ever expect, imagine or felt deserving of.  I was speechless.  I couldn't speak.  I knew if I opened my mouth, a world of hurt would tumble out and it would be messy.  I don't like messy and honestly, I don't like being seen.  I thrive in living under the radar.  Without a doubt, God was in that overwhelming gift.  That money will help pay for the monitor for Shelbie, gas and food for all these trips to Salt Lake and maybe even, I will take my kids to a movie and not worry about how many extra hours I will have to work to cover the cost of fun.

We have so much, so many blessings each day.  God truly is in the details...even when it seems we are going under, he's there.





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Wednesday, July 19, 2017

All That Life Requires

I feel like this title should start...

Captain's Log...

Because, seriously, we are knee deep in uncharted waters.  It's been an interesting week thus far. I've been living my life from as far off on the fringes as one can get and still be somewhat engaged or at least appear to be engaged.  It's an art I have come to perfect!

It is an intriguing place to be.  I have become an expert in being unhinged from the emotion of it all yet, at the same time, side stepping my way into the issue and poking it with a long stick because I can't believe this is all real but then without warning, the tears can burst forth and I can't even really name one single thing that upsets me...it's just the combination of it all.

I find it so fascinating to keep a distance and watch how we are all dealing with this latest news.

For one thing, we have yet to talk about it.  We are the highest functioning picture of dysfunction you will ever meet!  Hands down!  Corner on the market...special...we give new meaning to dysfunctional.

Shelbie hasn't talked about it.
I won't talk about it.
Sam has been busy moving home and finishing finals...which I completely forgot to help him move and clean his apartment! As for Spencer, he has been the most proactive about things on his own.  He has been doing some research and determined that we all needed to start the Ketogenic diet, known to help with seizures.  He has been very rigid in his quest to start this diet; certain that it is the key to fixing not only his problems but Shelbie's too.

I don't think this is going to be the best diet for us really...one day of him being on it and he was about to pass out!  He had a car full of girls waiting for him and I had a house full of men trying to move furniture into my basement that didn't fit...and he is barely able to stand and in a panic about what to do.  I was a bit scattered and said, "Spencer, seriously!  Eat something!  You need carbs!  I went to the kitchen and the only thing I could think to grab was an unopened bag of chocolate chips.  I pushed them into his hands and said, "Eat these!"  I'm not even sure his response but he slipped out to his car and I didn't see him again until midnight.

We haven't started the medication...I have a million excuses why we can't start it until Monday.  For one thing, I have to find a new cabinet to put all this medication in.  Our IV supplies are out of control and spilling out of their assigned place.  AND...there is a 25 page leaflet the pharmacy gave me on the side effects of this medication.  It freaks me out.  The most common symptoms actually sound a lot like dying!

We haven't talked about the whole issue of driving privileges.  I wish the doctor would have made a clear statement about that.  Now, I have to be the one to take it away and enforce it.  How does a young adult with a thriving business that requires travel...get to her appointments?

I have not been watching her as closely as I was instructed to.  In fact, I am doing the opposite.  When I think about how dramatically life is going to change, I get anxious and upset and I feel so much trauma from the past.  This is not to say that when I leave for meetings, I am not scared to death of leaving her alone because I am but avoidance of all those feelings is the name of the game.  I am so good at avoidance, I completely forgot to start her transfusion this morning so I'll be starting it now...another long night.

I am doing what I do best...running.  Running away from all these hard things, refusing to address any of it, making excuses, hoping it will go away.

I just don't know where to start.  I don't know how I am going to continue taking care of my kids.

Every so often, I mention to Shelbie, "You know we have to talk about this diagnosis.  It's going to be a hard talk but we have to do it."

"I know.  Not today."

So, for now...we are getting by, dealing with things individually the best we can.  Honestly, we are so distant, distracted and completely in-congruent and I feel the undertow so very close to the surface.  I have gone to great lengths to be aloof and unaffected by it all but the tears are so very close so I run even farther from connecting with anyone or anything.

I'm not ready to accept all that life will soon require of me.  I still can't really believe that I have to watch my kids go through this.

In a moment of irony, University Hospital called me tonight while I was visiting teaching.  They left a voicemail as they do...Spencer's heart is awry...when they see a certain pattern of rhythm, they call me to find out what he is doing and basically, if he is still breathing...which clearly, they know better than me since they are watching his heartbeat in real time.  Spencer is in Utah tonight.  I don't even have it in me to call and see if he's okay and his computer base that goes with his  heart monitor is at home so without his device beside the base, I can't even download the information they need to look closer at the event.  There's always an EVENT around here!  Sheesh!

We need to get through cardiology this week and Saturday, I'm hoping to get a little clarity at the temple while I'm there and maybe take a deep breath.  Shelbie's monitors should be arriving soon and that will be the next big thing to figure out.

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Monday, July 17, 2017

Untitled Part 2

I guess this post is part 2 of our Neurology appointment from last week...

In addition to the news of the seizure disorder, it was confirmed that Shelbie has a large benign tumor in the left temporal lobe of her brain.  I have never quite understood how a doctor can look at a brain tumor and say, "Well, don't worry about it."

Really?  Because how is that possible? It makes me kind of mad...well, really mad and part of me feels like I should have gotten mad about 25 years ago when it didn't make sense my SIDS baby continued to live...can you really call it SIDS?  And night after night for 2 years of monitoring when she couldn't maintain a normal heart rate or respiration rate...I wasn't suppose to worry about that either? And febrile seizures don't happen at 99 degrees...

I guess after letting this news settle in for a few days, I am now circling around to the anger side of grieving.  This is the ugly part of the process.  This is where there are no earthly answers for the questions I have, apparently.   It's kind of a baron place; lonely. Where you really want to pin someone to the ground and scream at them all the otherness you feel until they feel what you feel. This is not my favorite place to be.  But welcome...glad you could make it to the madness.

Anyways... I'm done with the phrase "Don't worry about."  So, I asked her to explain how a large brain tumor in the left side of the brain is nothing to worry about?

She explained that if you have to have a brain tumor, you want one in the 'Nevada' parts of the brain, not the 'New York' parts of the brain.  Shelbie's tumor is in Nevada; there is stuff going on but not important brain function.  I can't help but think that God surely, didn't just throw in parts of our body that have absolutely no good use or maybe he did.  Maybe he threw in a bunch of extra brain tissue so there was plenty of room for important stuff and brain tumors.  Smart guy!!

 We are still waiting to be scheduled for the PET scan of her body and brain to see if there is new growth in the Nevada Tumor and make sure it hasn't invited 'friends'.   They will also get another look at her dwindling white matter, the hippocampus damage and the AVM, they think they saw which could really cause some stroke problems.

We also discussed more about Shelbie's Flattened Pituitary Gland.  Again,  a few months ago when I heard about this, they said, "Don't worry about it, it isn't causing any problems."

So, again, last week, I said, "Tell me again how an empty or flat pituitary gland isn't causing problems when God designed them to be a completely different shape than flat?"

"Well, she is fine, that's why."
"She's not fine.  She's been on thyroid replacement hormone since she was 5 years old."
"Because she has Hashimoto's Disesase."
"How do we know she actually has that.  No one did any ultrasound, imaging, they just saw that she had zero thyroid hormone at age 5 and made assumptions.  How do we know she has no hormone because of her flattened pituitary gland?  How do we know her hot flashes aren't also caused by this?"
"Ahhh...you have a point. I didn't realize they hadn't worked her up for Hashimoto antibodies."

She wrote orders for a ton of blood work but it was such a seriously difficult appointment to get through that by the time we left the exam room, we were both shell shocked and Shelbie refused to walk down to the lab and have a blood draw.  She just needed to get out of there so that testing will have to wait until the PET scan.

Since her leg is still swollen with more enlarged lymph nodes, we are back to the question...does she have lymphoma now?  Again, the PET scan is also being ordered to rule that out.  Seems like this will be our yearly dilemma.

I am fully expecting that blood test, when we get it, to come back normal for Hashimoto's.  I know in my gut that her pituitary gland is faulty and the cause of her thyroid problem...in fact, I am willing to bet someone money that I am right.

This week, we have another trip to Salt Lake...Spencer has cardiology.  I sure hope my temper simmers a little because I am so tired of getting the monthly reports from his monitoring telling me that his heart was without a beat for 8 seconds, twice in the past month, his heart rate was 250 bpm another time and in the next 10 seconds dropped to 22 bpm...but let's continue to observe.  I'm so done with the run around!  We have plenty of proof that his body cannot regulate his heart rhythm. It's just time for a pace maker or defibrillator.  They have no clue how difficult it is to live like this. No clue.



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