Saturday, December 31, 2016

Here we are

One year sets and another year begins to rise on the horizon
We made it!  We all made it through 12 grueling months.  I've put on at least 15 years in 2016 alone...My heart is a little heavier, my brain is stuffed and my skin hangs a little lower in wrinkles of worry; just one of the souvenirs I'll be bringing with me into 2017 I guess. Oh, and some white hair too!

It was a year that left no room to breathe, moments that stopped us in mid sentence in our busyness of living. There were left turns and U turns and nowhere to turn.  We felt the impact of loss and grief but every now and again, an accent of hope and I daresay, joy.  However fleeting it may have been, I remember meeting joy in the most unexpected places; feeling joy that seized my heart in skipping beats I actually welcomed.

I could go on and on about how much I hated 2016.  I could go on and on with pleasing platitudes of hope for a great new year. You know, the niceties we expect everyone to say at a time like this, but I would really rather not.

Sometimes I just have to stay real and sometimes real is not a very comfortable place to be.  I'm not in a very comfortable place.  I am thoroughly exhausted from this year and not entirely excited for next.  I just pray it takes pity on me!

Anyways, I can't let the year slip away without mentioning at least something that made 2016 worth living...


I realize I am blessed to be wrapping up the year with these three that I journeyed with.  We did this year together.  All for one and one for all...and all that good stuff!  What amazed me is that my love for them grew exponentially.  The heart can sure hold a lot of love and then some!  This was my favorite photo of 2016.  Without a doubt, we all grew in spirit.  More than we can ever really measure and therein rested much joy!

I read this quote today from an unknown soul, "It is when you're going through the most difficult chapter of your life that your hero is revealed, and how beautiful it is when you finally realize you have the strength to save yourself."

These three are my my Heroes and Sheroe!  They saved me.  They gave me strength to keep doing what had to be done.  They made me try a little harder, live in hope and trust in the unfolding of greater things. I have witnessed them rise above every obstacle in front of them.  I have seen them defy the odds.  That is what made 2016 worth the struggle.

2016 brought some good things...Our nurse Gwen.  I never imagined that I would have room to welcome a stranger to my home and my heart every week for 9 hours of a day but she was sent from Heaven.  She was mercy that had been missing in my life.  Someone who stepped in for one day out of the week to shoulder some of this burden. Not only did she love and care for Shelbie but she loved my boys and I think they loved her too.  It was as if she always belonged with us.  Sadly, people come and people go.  We said goodbye to her this week. 9 months wasn't long enough for her to be in our life.  She is on a new adventure.  She leaves behind an empty place in our Wednesdays.


It was no co-incidence that we managed to compile an amazing team of doctors!  All of them new this year.  All of them in Utah.  All of them hand picked by God I think!

From the top left- Dr. Mary Beth Scholand- Pulmonology,  Dr. Adi Gundlapalli- Immunology, Dr. Paul Shami- Oncology/Hematology, Dr. Kathleen Boynton- Gastroenterology, Dr. Whitehead- Congenital Heart Disease, Shane Beeton- Faint and Fall (the guy who started Spencer's heart after a factory reset!)  Finally, Dr. Mihail Chelu.  We have an international team- American, Canadian, Indian, Lebanese, and  Romanian.  Pretty impressive minds!

                                      





I have Dr. Shami to thank for getting these amazing doctors together.  We really did end up with the best of the best.  He knows people all over this country.  He researches, he thinks about us, he works hard to keep the kids comfortable.  They all care about us and that feels so good to finally have some doctors who really care.  They are worth the 4 hour drive.  I still have some sad thoughts about why we couldn't have the same level of care here but I suppose there is nothing more I could have done.

We are adding two new docs in January to round out the team- Autoimmune specialty.  I am very interested for this upcoming appointment.

Anyways...so long 2016!  Later.



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Wednesday, December 28, 2016

Killing me quietly.

My life is trying to kill me.  I've been running from it for so long and it's finally catching up to me.   Literally.  It's killing me.  I ended up in the urgent care last Thursday afternoon because I thought I was having a heart attack.  Seriously.  I sort of let it go for a few hours and then when it got to the point I couldn't even drink water without excruciating pain and Spencer gave me a 30 second reprimand about how I never take care of myself, I drove to the doctor.

They determined that I was not having a heart attack but an ulcer attack instead.  I've wondered but I guess now I know.  They fixed me a concoction to drink that was horrific!  It was mostly lidocaine with some milky disgusting stuff.  I had to drink it fast so it wouldn't numb my tongue but man, did that hurt going down. After about 2 minutes, I felt so much better.  It was worth the gagging and drama I went through to swallow the stuff.  Of course, I acted like it was no big deal in front of the nurse as I tossed it to the back of my throat but inside, is where the drama was!  Ugh.

He put me on the most complicated set of pills known to man with instructions to eat several times a day.  Easy for him to say to the girl who hates breakfast, doesn't love lunch and is content with just a nice dinner.  Add to the fact my esophagus is now lined in razor blades of ulcerative joy...

Here's my dilemma with the pills.  One pill has to be taken one hour before or after I eat, on an empty stomach but it has an interaction with the other pill I am suppose to take, also on an empty stomach, 2 hours prior to eating.  and one hour prior to the other pill!  The first pill I have to take 4 times a day!  Tell me, how do you take that on an empty stomach yet you are suppose to eat all day!  I'm so confused which might explain why I am never compliant with medication.

The other bummer is that I had to stop my anti-inflammatory meds for my Lupus and Ankylosing Spondylitis.  So, I'm one unhappy camper.  For a couple of days, I was feeling better but yesterday and today is so much worse.  Nothing is settling and I just feel positively rotten and in so much pain.  I went to the health food store to stock up on some things I hope will help and I am going to abandon the prescription pills for now.

I can see now that I have to figure my life out.  Something has to change.  I just got a new job and I am very excited about it but it's another part timer and adds more stress.  If I didn't need it, I wouldn't have pursued it. I have no idea how to fix the mess I am in, let alone where to start in repairing my life.  Like everything else, there are just no easy answers.  In the meantime, I'm dying a slow and painful death!



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Tuesday, December 27, 2016

Christmas

Christmas already feels so yesterday!  How does that even happen?

We had a good Christmas celebration.  My parents arrived safe and sound from the Great White North of Canada, but ironically, we are stuck in the great white!  Talk about snow.  We have some.  More than enough.  It's been a very long time since I saw snow accumulation like we have had.  It's so beautiful and picturesque.

With everyone home, it was peace on earth around here.

My kids surprised me again this year!  They gave me a set of silver stack rings with their names engraved on them.  I love them. I was so completely surprised when I opened them.

On Christmas Eve, we went to visit May and take her a gift and some treats.  We knocked on her door and heard nothing.  We tried the handle and it was unlocked so we peeked inside.  It was cleaned out! Everything was gone except some mail that sat on the counter and her tricycle filled with stuff in the baskets.  I was very concerned about where she went.  She had recently stopped by my house to get some advice on her broken down car.  While she was visiting, I noticed that she walked with a limp and asked her what was wrong.  She said her leg was very sore and hot to the touch.  She figured it was just an infection.  I thought maybe it was a blood clot and urged her to see the doctor.  I always make it a point to ask her how the apartment is working out and she said it was fine.  She made no mention of letting it go or moving on .

We are pretty worried about where she is and how she is doing.

It's so sad to me how fleeting the Spirit of Christmas is.  I wonder if part of the spirit we love so much is the time we spend in planning the gift giving part of the holiday?  All you ever hear, is that it isn't about the gifts but really...it is!  Not so much in the receiving but in the giving. Its in receiving the gift of Christ and then giving away that light to those around us.  Sometimes, that light comes in a tangible gift.  That's the only explanation I have.  My tree is still up.  The lights that adorn it still twinkle.  The pictures of Christ, the thoughts of Christ...those are still there too, yet something is different; missing.

My one consolation is that the first of the year is almost here and that means another year edition of 29 Gifts!  It's coming soon so stay tuned!

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Tuesday, December 20, 2016

The Mind

Last week, Spencer and Sam went out on an adventure to make a video.  Spencer has been working so hard on his business and learning amazing things!  I am so proud of him.  He has really turned this past year and a half around for himself.  So many times, he could have just given up and so many times his dreams had to start over.  He persevered.

I love this video he made.  I have watched it a hundred times.  I love the message and everything about it.  He has had people who have spent 4 years in University studying videography, asking him for tips and techniques.  When they find out he has no formal training and knew nothing about video or cinematography until three months ago, they are amused...thinking he's teasing them but he's not.  

I think he has found his talent and purpose in life.



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Sunday, December 18, 2016

Christmas Bedtime Story- 2



Twas the week before Christmas, and all through the town
People were harried and rushing around.

You wonder what they'd been doing all year,
"Christmas is coming..oh my... oh dear!
My list is so long, I'll never be done,
I'll hurry and scurry, to buy for everyone!"

It was quite a sight to wander the stores,
People were busy with tempers galore.
I thought, "What a stress this season has become
Have they forgotten Christ and just come undone?"

I headed back home, to hide from the crowd
on my way out the door,  the bells rang so loud.
A box at the entrance was full of new toys,
for Angels with nothing, to bring them great joy.

I drove down the street and there to my wonder
some boys handing cocoa to the plow driver yonder
There's hope in this world, I thought to myself
as I passed an old woman who needed some help

I almost forgot the thoughts in my heart
but slammed on my brakes to give a jumpstart.
The weather was cold and my fingers were numb
but my heart sang with joy as I started to hum.

And then down the road, a lady in woe
with shovel in hand, she was clearing the snow.
I stopped without thought and took over the chore
and cleared out her driveway the snow was no more.

With hope now restored, my soul feeling lighter,
I got to my house, it seemed so much brighter.
I had just settled in with another 'to do',
When a knock at the door redirected my view

I opened it slowly, no one ever comes by
but with the view of the step, I wanted to cry.
Boxes of food and presents were there,
two smiling faces, a spirit to share.

I wanted to cry but showed awe instead
A loneliness lifted a soul had been fed.
These days have been hard, a little too much
But this was just right, a heart they did touch.

So, as this week starts to pick up speed,
Heading straight into Christmas, remember this plea.
There is more to this holiday as you already know
It's the love we give that sets the world all aglow.

It's not always easy this season of gifts,
Everyone's love is what makes the shift.
A big Merry Christmas and Happy New Year
One day out of many, we'll be of good cheer.

                                   Kat.







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Thursday, December 15, 2016

Here he comes...

This morning, little Rowan passed away.  His dad and siblings made the trip from Texas to Seattle just a couple of hours before he passed.  It has been a battle for this family and I feel sad, very sad.

This boy inspired more Faith, Hope and Charity in the light he spread to others just by being himself, than most sermons I've heard.  He was chosen to carry a special message to those who knew him,  I believe.
Rowan Windham- Image: Carrie Windham, Nicole Shen
I love this poem by Henry Van Dyke...I love how he blurs and softens the edges between life and death.


For 20 plus years, we lived with the clinical picture of Shwachman Diamond Syndrome until the gene of Dyskeratosis Congenita was found.  The two diseases masquerade as one another so it was a long road to the discovery.  I never take for granted, the fact that my kids have done so well.  I know that the situation can change quickly and without warning.  In some ways, I feel guilty that I get to have my kids so close and so healthy compared to the short 10 years, Carrie was able to have Rowan.

I have received the majority of Shelbie's bone marrow biopsy reports back and other than another drop in the number of cells her marrow is producing, it looks stable.  No cancer.  No lymphoproliferative disease, no myelodysplastic changes.

I received a call this morning from the Cardiologist.  They were able to pick up on all of Spencer's recent heart events even though the computer hooked up here at home seemed to be malfunctioning.  I told them we hadn't started the Cardizem because I didn't have a good feeling about it.  He said he was very relieved that we hadn't started.  It would have lowered his blood pressure and it could have had detrimental side effects.  I am so grateful I was in tune to know.

They are getting a little closer to understanding what is happening to his heart, they believe it is mostly due to a poor functioning nervous system.  In addition, he is having electrical issues and one moment his heart is too slow, the next it is too fast and in between it flutters and stalls.  They confirmed that the one medication he is on is not causing his chest pain, his heart is causing his chest pain and that worries me!  They are going to continue to treat the Bradycardia, as they would rather he suffers with a fast heart rate than an extra slow one. We will not treat the Tachycardia at this time.  He told me his heart makes abrupt changes that they rarely see so that is confusing them.  They had one episode show up where is heart went from 45 bpm to 175 bpm without a steady incline  as you would expect.  That is worrisome.  He hasn't  been physical at all for two weeks or more because he has been not feeling well.

He assured me there are still things they can try to get things back in order.

Shelbie is having another rough time with a swollen, hot to the touch leg again and very high blood pressure just as she did prior to her stroke.  I kind of feel sick over it.  This afternoon, she had to lay down because the room wouldn't stop spinning...again, another precursor  of the stroke last month.

It's been a hard week!

This morning though, Spencer and I made it to the temple with three family names to do!  It was a peaceful time despite the rocky rest of the day.



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Tuesday, December 13, 2016

Peace for Sale

My home teachers came by on Sunday night and the question was posed, "If peace were on the auction block, what would it sell for?"

Hmmm...that's an interesting thought.  What if Peace and the other virtues like Faith and Hope were all up for auction, joined by Happiness.  Which one would claim the highest bid?  If you could, which of these would YOU buy?  Would Peace be the first thing on your mind?

I have thought about this a lot.  If I was out shopping the Virtues, I would probably choose Happiness, at least as an impulse purchase.  Don't we all just want to be happy?  Don't we all compete to some degree to show we are the happiest?  I rarely hear people say anything but "I just want to be happy."  Or we say to people, "I sure wish you were happy."  "I would give anything to see you happy."

Never have I heard, "I just want you to have Faith."  Maybe it's been said...Actually, I may have said this to one of my kids but really, it's almost always about happiness.

Hope?  Well, of course that word gets tossed around like confetti..."I hope we get those tickets before they sell out."  "I hope it doesn't snow today." Hope is an easy illusion to create if we aren't careful.  To me, Hope is the twin virtues.  Hope can be flimsy, the kind we think nothing of.  Hope in Christ is something altogether different and that, has some substance to it!  So take care to differentiate the Hope you are out shopping for.  

And then there is peace.  If you think about it, peace would be a nice possession wouldn't it?  Not just to try on every so often to make sure it still fits, but to have it on like a cloak of security, keeping us safe from all the other negative emotions that rally for our support.   Peace is understated and underestimated.  In fact, the more I think about it, the more I think Peace is worth top dollars these days.  It's so easily tattered just by opening the daily news.  It can hang by a thread at the first sign of trouble and anxiety and when we think it's long gone, we give away its room with store bought happiness and with that, pretend that the fulcrum on which our life balances, stands steady once again.

Peace.  I wonder how much Peace would sell for?  What is it worth to you?  Perhaps, in the purchasing of Peace, a little quiet might be thrown in the bag as a December special.


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Monday, December 12, 2016

Bless His Heart

It's a crazy time for Spencer and his poor heart.  Today was especially hard for a number of reasons.  He is having so many 'events' that he has to download the computer connected to his ILR multiple times a week, today it was multiple times in one day!  They have it set to 4 events and then you have to download the information to the Hospital so it doesn't overwrite itself and erase the data.  He has been having events all day long!! Pain, Dizziness and on the verge of passing out all day.  His blood pressure is so low but his heart rate is high or normal.  He's been hanging out at 95/40 with a heart rate of 75 mostly.

He was suppose to start a new heart medication today but I don't have a good feeling about it so I told him to wait.  It is to treat his Tachycardia- fast heart beat but the side effect is a lower blood pressure. There is no way, he can afford to have a lower blood pressure.  The other medication he is on is to treat the Bradycardia- slow heart beat, by bloating up his arteries by retaining salt and fluid so there is an increased pressure and a faster heart beat.  I don't really understand all that but it's not exactly helping much I don't think.

I asked the Pharmacist about both medications.  Spencer has been having chest pain frequently and he thought it was the medication he has been on.  The pharmacist said chest pain wasn't listed at all for side effects.  So, it's likely a 'real' problem with his heart, not medication induced.

Tonight, he said, "Mom, should I take this new pill before bed so I can just slip quietly away through the night?"  He was joking, as he usually does but I burst into tears.  It's just one of those days.  I wish there were answers.  I wish there were answers for him and I wish there were answers for other kids I know who are suffering.

If you've been following along for awhile, I posted a couple of months ago about a little boy who needed some prayers.  His name is Rowan.  The second bone marrow transplant worked but he has a fungal infection in his lungs, he is on constant dialysis because his kidneys were destroyed by the chemo drugs, he has lost his hearing, he has a blood clot in his femoral artery, an infection in his central line that has spread to his blood and a host of other problems.  This morning, they thought they would need to intubate him because he is struggling to breathe on his own.  His body is filling up with fluid and he is one tired little 9 year old who has spent the better part of this entire year in the hospital.  I haven't stopped thinking about him or his sweet mom who has never left his side, not even once!  They are in Seattle but the rest of the family is home in Texas.  She orders things she needs from Amazon so she doesn't have to leave him.  I just can't even begin to understand how she is doing this all alone.  Her husband is taking care of the other kids at home but he just had surgery and three weeks ago, her mother died unexpectedly.  It's so much!  It's amazing how much the human body can take and still remain alive.  I pray so hard for this family; they have a faith that I have never seen before.

Somehow, things will get settled for Spencer.  As much as I don't want him to have surgery, I feel like we are running out of options to keep his heart beating in a regular and consistent manner.  I really feel like it's time to do some intervention.  It's affecting his quality of life.

He is also getting sicker and sicker with his GI problems.  Even gluten free food makes him really sick.  Rice, plain old rice makes him really sick.  There is literally nothing he can eat that doesn't make him sick and weak.  It's frustrating for him.  I have tried so hard to fix FODMAP foods.  I didn't think it was going to be a miracle fix but I did think we would see some small improvement.  I called in to our GI doc tonight in hopes that she will call me back tomorrow with a miracle in mind.

So, that's that...Oh my job interview I was suppose to have today got postponed...maybe Tuesday.  I got a call back on another job I had applied for a month ago!  I'm not sure when the interview will be but they said they are interested in talking to me.  The interview tomorrow is for a drafting position in the city but he would let me work from home as long as I met his deadlines.   It is only part time.  The job I got a call back on tonight is a writing/research position for a Marketing Firm, specifically writing articles on women's health issues.  I'm excited about this prospect.  I love writing and I love researching!  We'll see.




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Sunday, December 11, 2016

Christmas Bedtime Stories

Here's the first post of Bedtime Stories.  All the stories I write here are true but names have been changed.  These stories have either happened to me or someone close.  Enjoy a bedtime story and remember to light up the world this week with a little Christmas.

There's Room Here.

The sweet voice of a young girl could be heard spilling from the cell phone her mother held to her ear.

"You want to buy Christmas for some kids?  I think that's a wonderful idea honey!  You are so thoughtful.  Let's talk about it when I get home from work?....Yes, that is a brilliant idea!...I'm not sure I know any kids but we will find some.  I need to go honey, I'm at work.  Let's talk about this tonight!  I love you!"

Anna, a 14 year old with Autism, has a heart of gold.  Her heart dwells close to the spirit and with all the innocence of a 6 year old, she begged her mom the rest of the night to find some kids she could buy presents for.

It hadn't exactly been an easy year for the family.  A newly wed of just over a year and a family of blended souls brought a new kind of work and energy to Jillian's world.  She herself had three daughters and a son.  One daughter with Autism, another girl with Asperger's.  Her son had recently moved in to live with them after a couple of years living with her Ex.  Jillian's new husband had 4 children of his own with two still at home.  They all lived in a small but comfortable home.  They didn't have much but then again, they didn't seem to want for much.

A recent series of misfortune found them with limited income and months to struggle along while Jillian's new husband rehabilitated himself from a recent accident.  It was just her nursing income that kept the large family afloat.

Jillian is the kind of girl who spreads joy and laughter wherever she goes.  She loves deeply and sees the needs of others even before you know yourself of the need.  She never has much but she always finds a way to give and then give some more. I have only known her a short time but I know she buys yarn to deliver to the woman she cares for in the assisted living center who can't get out but loves to knit.  She will run through the drive through of a patient's favorite restaurant and drive it up to her isolated home, over an hour away, just to make her day a little happier. She never questions, she never complains.

Little Anna talked all night about the kids she wanted to surprise with Christmas presents.  Though Jillian didn't want to disappoint her with the details of their dwindling bank account and few presents for themselves, she committed to doing some small thing for an angel or two in need.

The following morning, the phone rang as she was rushing off to work. Her husband answered the call.  Within a few minutes, he called Jillian to say that a social worker had called to see if they could take in two small children.  "Hey babe?  I told them we would.  They arrive tonight."

I'm not sure I know many people who would jump aboard an idea of adding two more children to the mix, two more children who came with nothing but the clothes on their back, two more children to take up room in a 3 bedroom house that already kept the crowded family hungry for space; but Jillian did.  She never considered the words, 'I'll think about it.'  or 'Are you kidding me? Two more mouths to feed?' and she didn't even consider where they would put them.  Of course there was plenty of room in her big heart.

That evening came and she hurried home after work.  Together, they made a make shift room on the end of the basement storage room.  With her crafty skills, it was a humble but loving space for the little ones.

Anna could hardly believe how much this night already felt like Christmas.  Two kids coming to spend a few weeks was more than she could hope for. There's something about Anna that softens the world around her and draws the light out of everyone she meets.

The two children arrived and it was as if the Heaven whispered to the family that it was meant to be. The children, never knowing what a loving family was, were gathered in close as if they were the greatest gift of the season, as if they always had a place here.  A little house has more room than you think for the least of those around us.  Sometimes, Christmas comes packaged in the most extra-ordinary way.



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Saturday, December 10, 2016

Sam

Sam is moving out in just a little more than 3 short weeks!  Gah! 

I'm not looking forward to him being gone...I know, he's 3 miles away but I don't care.  I like having my kids around.  They are all so much fun and we have a great time together.  But, moving out is part of Sam's 'must', and it will be good for him.  

It's been fun to tease and annoy him as I try to cram in some last minute smothering.  For example, the boy doesn't like the kitchen.  He must think he is allergic to everything in it except for the food I lovingly prepare for him so that's got to change.  I keep telling him he needs to learn how to cook good, healthy food so he doesn't gain the freshman 15.  I have asked him to make a list of foods he wants to learn to make and I will teach him.  

Well, Sam is Mr. Independent so not surprisingly, he set off to teach himself a few things.  But here's the thing about Sam, he loves Life Hack shows.  He is all over the unconventional way of doing things, even simple things.   One of these last few days, he decided to make some scrambled eggs.  I wasn't home and didn't get to witness the event but my people tell me it was comical.  He decided to crack the eggs into a Ziploc bag, mush them up in the bag, add some grated cheese and I think he threw in a little ham.  Then, he put it in the microwave!  

I understand it was disgusting looking, and undercooked but to his credit, he ate the whole thing even after it slimed out of the bag and onto a plate! 

A couple of days ago, he decided to make a gourmet version of Ramen by cracking an egg into the water while it boiled which isn't a bad idea but my kids drain all the liquid out after the noodles are cooked and then add the seasoning.  Once he drained all the liquid out, he was left with a bowl of stringy eggs and noodles with beef seasoning.  He then proceeded to add Franks Hot Sauce and about a Tablespoon of garlic salt!  Ha ha...I tried so hard not to laugh and again, he didn't enjoy it much but he ate the whole thing.  Then he said, "It wasn't bad but what are some other foods I could cook up in the Ramen?"
"Is that your master plan?  Adding whatever you can find to a bowl of Ramen?"
"Well, it's not a bad idea..."
LOL...that's a horrible idea!! But, I gotta hand it to him for trying.  

I suggested we just stock up on paper products and maybe one recycled Tupperware bowl for his microwaved Ramen.  That way, he doesn't have to over extend himself with doing dishes...ain't nobody got time for dishes, especially a young bachelor like himself. Although, I sense he's going to get a hankering for some grilled cheese which shouldn't take him too long to master, I'm sure it will have Frank's Hot Sauce in it...I may have to splurge and buy a frying pan. 

He's getting better at the laundry, he hasn't Facetimed me in a long time for instructions on how to turn the washer on but still needs to work on keeping his room picked up.  No one wants a slob for a roommate!

Sam is the best to harass over text messages.  I love reminding him over and over about things he already knows like driving carefully, wearing a seatbelt, being a gentleman to the girls and so on!  It bugs him so much but gives me so much satisfaction.   My favorite thing to do is text him only in emojis.  He really hates that! 👀💓👇.  I guess since he won't be here everyday, I will be able to excel at my emoji texting! He's going to be so surprised on his first day of College when I send him a good luck text! 

I'm just going to miss him.  When he comes home after a night out, he always wakes me up in the strangest ways.  He used to whisper which made no sense because I'm deaf in one ear and hard of hearing in the other but now he says, "Hey! Wake up! I'm home!".  Last night he patted me on the head to wake me up!  Some nights he slugs me.  Other times he shakes me and when he's feeling tired and lazy he just stands there till I feel someone staring at me and wake up in a cold sweat!  You just never know with that kid.  He is so funny though. Sometimes, I'm awake but  he doesn't know that, so I just lay there and when he is about to shake me, I say in a soft, creepy voice, "S-aaaaa-mmmmm." 

He's so fun to tease, the house just won't be the same without him here everyday.  I'm certain I'll see him on laundry day and when he gets tired of Ramen and Frank's Hot Sauce; for sure when he runs out of gas money.   









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Thursday, December 8, 2016

Bits and Pieces

I feel like so much of life is just a do-over.  It's hard to stick to anything very successfully.

The FODMAP diet the boys are suppose to be on...Ugh...I was off to a grand start just before Thanksgiving and thought it was going to be so great but it wasn't.  Spencer didn't have his heart in it and in order for this to work, there has to be some level of commitment besides me as the head cook.  
A few days ago, after being oh so sick, Spencer decided he needed to seriously try the diet.  So, we started again.

And again, it's not the easiest thing in the world.  Why is it that gluten makes everything better? Gluten even has the power to make a bad day better.  Without gluten, bad days remain bad days!  Just kidding.  Seriously though, life is better with chocolate chip cookies but those are not FODMAP approved.

Here we are, a few days into it and there is no change in Spencer's health.  He is just as sick after every meal even without sugar, gluten or dairy.  I have a bad feeling that nothing is going to help.  I can't imagine what it feels like to be him.

Shelbie had her transfusion this week.  It took 8 hours!  Next month, when he bumps the dosing again, it's going to take forever! I don't even know how the nurse will be able to come and stay for as long as she is suppose to.  I feel very confident in doing this myself, even taking vitals every hour but still, that's going to be a big ol' day and at this point, the insurance company insists that a nurse is here.  She had another reaction last night, this time a fever.

Out of the blue, I got a call from a new doctor who said they wanted to see Shelbie in a couple of weeks.  The new doc specializes in autoimmune diseases.  That ought to be interesting for the whole family!  Spencer's eye is getting bad again from his autoimmune problem.  Poor kid can't seem to catch a break.

I have an interview for a new job on Monday in the city.  Like any job interview, I'm nervous and not sure I will be able to do it.  This is not the job I was expecting.  I applied for it over two months ago and sent in my portfolio and even  heard back that he was impressed but that was it.  I had written him off because he said he would work out a time to meet but that was the last I heard from him.  His call today was surprising.

I'm not sure what the job pays or any details but it would sure be nice if I could retire some cleaning work.  I hurt my shoulder a week ago and I have been in some serious pain, so much that I can't hardly sleep.  Even a cocktail of anti-inflammatory meds and muscle relaxers only tease and taunt me.   I toss and turn all night, every night.

Last night, the power was out for a few hours from 10 pm until after 3 am.  My house has so many gaps, you can feel breezes in about every room so the -4 degree temps were making things really cold.  The boys hauled their beds down to the living room,Shelbie took the sofa and I curled up on the loveseat and we all chilled by the fireplace talking till we fell asleep. We were toasty enough but the rest of the house had frost on the walls!  The kids said it was one of their favorite nights and I actually got three straight hours of sleep!

That brings us to the end of a long week!



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Monday, December 5, 2016

Memory Lane

At dinner on Sunday night, I was asking the kids what their favorite Christmas memory was of giving or receiving.  None of them could think of anything.  Nothing.  I kept pressing them and bringing up my own memories.  I could have made it all up because they don't remember much.  I'm not sure if they all have the brains of an 80 year old or if the stress and struggle they have continually lived with, has short changed them in the memory department.  It's a little unnerving if you think about it.

At any rate, Spencer jumped on the request with all sorts of made up stories himself.  He was coming up with the funniest stories that closely followed the story line of some popular Christmas shows...

"I remember that time we were visiting a homeless man and he said he really needed some construction boots so we went to the store on New Year's Eve and said to the clerk, "Hey I need to buy these boots for this homeless man, it's New Year's Eve and these boots are just his size...  Or remember  when it was snowing one night and we lived out in the country and we heard this train coming down our road on Christmas Eve?  Yeah, it was weird because we didn't live by the train tracks but then we heard these voices in our heads and they said, All Aboard the Bipolar Express!  Remember that?  We all believed we were hearing voices!  It was such a fun trip!"

He just kept rambling on with these made up stories and we were all laughing so hard!  I can't remember when we actually laughed so hard, tears were running down my face.

Then Shelbie chimed in, "My favorite memories were when mom went through her manic phase and woke us up at 10 o'clock at night in the summer to go to the Drive In or when she would take us sledding at 1 in the morning on a Friday night and then to Jack in the Box for treats after!"

Of course that spurred them on to remember other details like when we went to Victoria on vacation and filled the back of our Volvo station wagon with purple star fish and they ended up climbing all over the car when we went for dinner. Or, when I went running with them into the ocean with all our clothes on.

Those are true events but I have no idea where they got the notion that I am or had Manic phases!  I laughed and said, "Ahhh, why do you think I was manic?"

"Well, what mom wakes their kids up to do crazy things like that? "
"A mom trying to make some good memories happen in between all the bad ones...!"

Oh well, I don't care if my kids think I'm crazy...they haven't forgotten the crazy things right?

It's funny how we forget so easily, not only the good things but the bad too.  After we had laughed ourselves silly, I reflected on how blessed we were to forget some of the hard things.  When you add up what our little selves have been through in 8 weeks, it's staggering and sobering.  In just 8 weeks, Spencer's heart stopped, had a procedure to place the loop recorder.  Shelbie had a stroke.  Sam's brain is falling into his spinal chord, 3 bone marrow biopsies, pneumonia, ear infections, Spencer's vision problems with his latest autoimmune disease!  That's an amazing number of trials and worry in such a short amount of time.

Not to mention in all of that...Shelbie's business is flourishing, Spencer started a new business that is taking off, Sam got registered for College and a new apartment, and I have managed to still work 45 hours a week.

Sometimes, it's interesting to look back on where we have been and to count all the ways we have survived this messy life and even thrived!


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Sunday, December 4, 2016

Christmas Bedtime Stories

On my other blog, I had a Christmas tradition called Christmas Bedtime Stories.  Every Sunday in December, I posted a personal story or essay of Christmas blessings and wonder.  It has been one of my favorite writing traditions and I wanted to bring that tradition to this blog.

Mary

Mary, did you know that your baby boy has come to make you new?  This child that you delivered, would soon deliver you?
Art by Liz Lemmon Swindle


In the past few weeks, I have been privileged to set up countless nativities in the homes of clients and friends.  Perhaps in the careful placing of these displays I have let my mind wander back to that moment so long ago, to the mother of Christ, Mary.

 At times, I feel overwhelmed and anxious for her as I think of the load she was called upon to carry. I wonder if she ever questioned how she could be the kind of mother Jesus needed her to be? At other times, I feel a reverence and peace that she knew and loved her Father so much, she felt nothing but peace. I wish I knew her, more of her deepest thoughts.  I think of that night spent searching for a place to rest, as the moments of a humble birth stood at the door of her soul.  I think of what that Manger must have been like.  Over and over I think of the words from Matthew, " Foxes have holes and birds of the air have nests; but the Son of man hath not where to lay his head."

Lately, I've been thinking that Jesus did have a place to lay his head. I like to think that Jesus spent very little time in a cradle filled with hay, but rather in the warmth and safety of his mother's arms.  I like to think that Mary never put him down.

I can't help but wonder where in this month or any other month, do I set the Saviour of the world?  Does he lay aside in a wooden cradle, on display for all to see, like some trophy that sets us up as a faithful follower yet, our actions trail far behind when no one is looking? Or, do I hold him close, a treasured gift, allowing him to make me new, to deliver me from my own self; and before I realize, it is I who is cradled in His safe arms?

December is a month when the rough edges of the world around us are tempered and polished with the birth of a baby so long ago.  It's a time when, for at least a few weeks, the lonely are visited, the poor made rich through an abundance of kindness, needs are met, hearts are softened, broken souls are mended and the light of Christ escapes through our cracks of imperfection and fills us all and for a small moment, no one is lost and everyone has a place to rest; in us.  In Him.

Thomas S. Monson said this of the love of Christ during the month of December, "You can hear it. You can see it, You can feel it."

December has always been a time of reflection for me.  It is just as President Monson suggests; I have heard Christ this year, I have seen his works and love and I can feel him close.  May we ever strive to hold our Saviour close and not only watch over him but follow him, become like him, be constant like him.

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Friday, December 2, 2016

Done for a year...hopefully.

Thank you for the extra prayers!  This was probably the best bone marrow biopsy we have had in a very long time!  Even the ones with sedation.  I'm convinced the medical staff in the room make just as much difference as the medications used.  In Seattle, they sedated the kids but they weren't super friendly people doing the biopsies and 5 minutes after the biopsy, they were being moved to a hard plastic chair to finish waking up!  Not cool.

Today was better than I could have planned it in an imperfect world such as it is.  Still hard and not fun but manageable.

If you remember, Sam's was a disaster with so much chaos in the room.  This time, it was just the people who had to be there, no extra observers.  The PA doing the biopsy, Renee was so amazing with Shelbie. She was mindful and thoughtful with each step and helped Shelbie feel strong and capable to get through it.  The nurse suggested some quiet music.  It was as if everyone was reading my mind with all the things that I thought might help.

The very hardest part was even before the biopsy started.  They couldn't get her tissue numb with lidocaine, just to make the cut in her skin.   It took about 6 full syringes and in addition, they finally brought in a spinal needle that was super thin and about 9" long and inserted that right around and up to the bone and she just kept pulling it in and out and pushing it back and forth.  Yes, Shelbie felt that needle going in and out even after all the lidocaine they had already pushed.  That was the hard part.  She wasn't screaming, not at all but clearly not doing well.

I actually think that spinal needle made the rest more bearable.  There was a tense moment for her when it first got started so I went over to her side and knelt close to her and I walked her through some guided imagery and helped her keep her breathing in rhythm.  Since the kids were little, I taught them to disassociate from the pain so they could manage it better.  Shelbie and Sam are the best at it if they have some guidance.   After we got that going, she did awesome!  Not even tears...from either of us!  She only had to have 40 mg of Fentanyl, the boys had twice and three times more than that.

Poor girl though, her hip is a big bruise because the procedure was pretty rough.  I have been told for the past 20 bone marrows on her that she has the hardest bones they have ever done. She bled a ton and it took everything Renee had to keep twisting that needle deep into her bone.  Ugh...

I hope we get stable results.  The biopsy part, where they take out a core of the bone seemed weird.  The boys' came out like a neat column of bone, Shelbie's came out like mush and fell apart which seemed odd considering how difficult everything was to get to that point.  I hope it's not a bad omen.

All in all, I'm happy with how things went.  I'm happy that the spirit in the room was calm and quiet, it makes so much difference.  I can't say enough about how much I appreciated Renee and Karissa.

Good news though...they just changed their schedule so they will be able to do all three kids, one right after the other next year!  Such a blessing! A long hard day but worth it.

The roads home were dry and clear.  Lots of blessings today!

Last night, we got to Salt Lake just minutes before the lights at Temple Square shut off.  I have never seen them in person so I really wanted to stop.  It was a very fast stroll through the grounds but so worth it!










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Thursday, December 1, 2016

Bone Marrow Biopsy #3

The biopsy we've been putting off forever has finally arrived.  Tomorrow, Shelbie will have her bone marrow biopsy at Huntsman's under conscious sedation which really means, she will be conscious that the sedation they use sucks!

I have a special little place in my heart reserved for Shelbie when it comes to bone marrow biopsies.  She was the first of the kids to have one.  She was the first to have one without any sedation; conscious or otherwise.  I will never, as long as I roam this earth, forget that day.

It was at Primary Children's Medical Center, her platelets were at 1, a number that carries with it extreme risk for spontaneous hemorrhage. She was 6 years old and it was her first biopsy.  Samuel was just 5 months old and sat beside the bed in his carrier.  Two nurses, laid their arms and upper body weight across Shelbie's back and held her arms to her side.  Another nurse stood at the foot of the bed, tethering Shelbie's legs as she was flailing and screaming.  I knelt down at the head of the bed, cradling her little, sweet face in my hands, and with tears streaming down my own face, stared into her eyes and sang a shaky version of,  I Am A Child Of God. I could hardly cry out the words.

With every scream, as the doctors removed a sample of her marrow and a sliver of bone, I pled for Heaven to help her, to make this end.  I feel those devastating moments of extreme pain and sadness even still.

On that day, I vowed that my kids would never experience that again, only to my horror, just 9 months later, Samuel would undergo that same, procedure, awake.  I had no idea back then, the course our life would take.  That was the last day I stepped foot in Primary Children's Hospital.   I went to great lengths and drove an extra 2 hours out of my way to St. Lukes in Boise, and then 11 hours to Seattle because I had grown to hate that place.  I still can't walk into that hospital without feeling extreme anxiety, panic and guilt.

So, tomorrow is going to be a hard one for me.  It will be a hard one for Shelbie.  Not only will the procedure be hard but waiting for results will be difficult this time around.  Normally, I don't stress a whole lot about the time we spend waiting to hear if their marrow is stable for another year.  This time, it's different.  Shelbie has so many symptoms of lymphoma and this will be the first time since all of her difficulties increased this year, to know for 100% certainty she is cancer free.

I know, as I sit beside her bed tomorrow morning, I will see that little terrified, 6 year old angel from the past, who has endured so much pain and affliction and it will be almost more than my tired, mamma heart can manage.  I will likely have to leave for a moment afterwards to collect myself.  I'm not at all excited to go through this with her...I don't get angry about many things but bone marrow biopsies done without complete sedation angers me so much.

At any rate, this will hopefully be our last trip to Utah until the second week in January.  I am so looking forward to the fact that the kids can try to feel like  normal kids for a few Christmasy weeks. We've had a terrific winter storm and my lousy car has me knotted up about making this drive.  It took me 20 minutes this morning to drive 4 miles to my client's home. Hopefully,  it will be uneventful tonight when we finally get on the road.  The boys will be holding down the fort!

I hope our prayers are heard and swiftly answered, that we are all safe in our travels and if there are a few Angels with nowhere to be tomorrow morning, and nothing to do, I hope they choose to be with Shelbie.  She deserves a little extra help from Heaven.




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Tuesday, November 29, 2016

Life Hack

I've always wanted to come up with some awesome life hack of my own.  And...today is not the day!

Ha ha...but I do want to share the most phenomenal discovery that has changed my life.  Believe me, it has to be an incredible hack in order to excite me.

If you are over 50 years old or suffer with a disease like Lupus or Fibromyalgia, then you will be able to relate.  Watery eyes!  I have been suffering with this to an increasing degree for over a year.  If I yawn, the tears run down my face.  If the wind is blowing, my eyes water.  If it's cold, my eyes water. As soon as I put my make-up on, my eyes start watering.  It's annoying.  My tears seem so salty, the skin under my eyes is constantly burning and dry.  By 8 am, my makeup on at least one eye is completely off.

This past weekend, it was so bothersome, I went and bought lacquer eyeliner.

Out of the blue, something showed up on my Pinterest feed about watery eyes.  Their remedy was a dab of Vaseline in each corner of your eye- as close as you can get without getting it inside your eye.  I was pretty skeptical especially since it said "the tears find a different path to take."  I don't think tears just divert themselves because of a little Vaseline but I'm desperate to try anything.

Low and behold- it works!  I forgot what I was missing all this time having eyes that didn't leak!  I feel like I was just given a new lease on life. Seriously though, it was non-stop. All this time, I thought I had a blocked tear duct and maybe I do but as long as this is working, I'm not going to worry about it.

I do have one question though, why do I have to deal with things that shouldn't happen for another 20 years?  I'm an old soul!!

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Monday, November 28, 2016

Around we go...

Updates from the trenches include the good, the bad and the ugly...

Sam has turned the corner on the pneumonia!  Hooray!  He is up and around and it seems that for now, things are improving with the antibiotics.  He threw me a curve ball this afternoon when I got home from meetings and a doctor appointment with Spencer...He's moving out!

Gah!!  I thought I had successfully convinced him that saving $1200 would be the way to go.  I reminded him of all the wonderful things he could buy for $1200 instead of paying rent.  I told him how much we would miss him.  I made him think life would stop without him here!  Just kidding...I didn't do any of that.  Well, I do think it's a waste of money to spend on apartment living when you have a home 2 miles from the college you attend.

Alas, he's Mr. Independent and the pull from his friends is greater than his dear old mom.  I realize he will only be living 4 miles away but still! My kids are my friends and I love their company so much.  Not seeing him everyday or having family dinners together every night or family home evening will be so sad.  I'm not sure how to transition when he will be so close.

With Spencer gone it was hard but he was in another State so I really knew there was no way those traditions could happen.  Oh well, I will survive this I'm sure.

Spencer!  Poor Spencer.  We saw our Ophthalmologist this afternoon.  If you are local, I'm giving a shout out to Dr. Josh Fullmer.  He rocks as a doctor.  He is so kind and thoughtful.  He called me early this morning, even before the clinic opened to see how Spencer was doing.  Not many doctors are that mindful.  He fit Spence into the schedule and Spencer has an autoimmune disease called Scleritis.  His immune system has attacked his eyeball.  It creates extreme pain, vision loss, swelling and inflammation.  The treatment is steroid eye drops which we have been doing since Saturday but that isn't making a difference so far.  Dr. Fullmer wants to give it a few more days to see if it will work.  If not, he will switch to oral steroids.  It can be hard to treat and can last for weeks.

I tell you, that boy is being tried right now.  I feel so sorry for him.  It's tough. He's busy with work and when you can't see much out of one eye, it makes being a videographer a little difficult.

This morning, I had to go to a lab in the City to get my blood drawn.  NIH is testing me for Dyskeratosis Congenita.  To say this makes me anxious is an understatement.  At this point, I have opted out from having them send me the results.  It makes my kids so angry that I am refusing to find out.  I don't care.  I know my head, I have more than enough to deal with emotionally, I don't need that looming like a dark cloud.

I have decided not to call the doctor about Shelbie's incident on Wednesday night.  We have her transfusion again this week so I'm waiting to see if anything comes of it before I get worked up.

We are off on another busy and insane week.  I am trying to get some projects wrapped up and applying for a job that I really, really want.  I am hoping to hear soon.  It would make for a very happy Christmas for me if it worked out.  Still, I worry if I can do it, especially if the new year continues like this entire year has been.  I'm leaving it up to God and see what he has in store.



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Sunday, November 27, 2016

It's raining, it's pouring...

We are 3 for 3!

Today was Spencer's turn for the urgent care.  Never underestimate the power of God to keep you humble and on your toes.

His problems actually started on Wednesday.  He was complaining that his left eye wasn't focusing and his brain was hurting deep inside on the left.  I did what I always do..."Do you want some Advil?  If you're nauseous I have some Zofran too.  Maybe just take a nap, your eyes are probably strained from all the computer work."

I offer the worst  kind of sympathy but I don't know what to say anymore, and half the time, the symptoms are so random I have no clue what to do.  I do know that it isn't reasonable to be running to the doctor every time something comes up.

It went away after a few hours and then I didn't hear another thing about it mostly because he's been at his dad's house for the holiday.  I guess this morning it flared up again but this time he couldn't focus on anything close.  In order to see, he had to have things at the length beyond his arms reach.  Still, I didn't hear about it until tonight and when I saw him, I was shocked.

His left eye is sort of drooping.  That looks like the only problem but when you lift up his lid there is no white space left, it's completely bloodshot.  Just bright red!   His eye isn't tracking well and his vision is getting worse and the pain is in the back of his eye, in his head, not where you would expect pain if he had pink eye. He's also really sensitive to light.

I took him straight in to the urgent care.  All three kids have the gene for Lebers Hereditary Optic Neuropathy.  LHON.  It raises it's ugly head in young adults.  It starts with blurred vision and then within two weeks, they go completely blind.  I was reading up on it and there is a mutation called LHON Plus...this causes a tremor and heart arrhythmia... A plus?  They couldn't think of a better name than LHON Plus?  You get to go blind...AND your heart stops too!

Anyways, of course the PA on duty had no clue what to do, but to his credit he said, "I have no clue what to do about this but before I start doing anything, I wonder if you would be okay with me stepping out so I can read up on Dyskeratosis Congenita and LHON's and then I would like to call your Ophthalmologist to let him know what is going on." I was super impressed!

They don't think that this is related to LHON's, thank goodness!  They think he has an autoimmune disease of the eye but until we can get in to see our doctor on Monday, they are starting him on steroids.

Science hasn't come very far in the world of Mitochondrial problems which LHON's is.  Some say it takes two genes for the disease to manifest itself and some say the disease can happen with only one gene.  My kids just have one gene.  Oddly enough, they have started doing gene therapy and are seeing great results if it's done before you go blind. I pray we never have to go down this road. I think we have enough to deal with and DC has it's own array of damaging eye issues.

Sometimes, I just don't understand how so many things can happen to us all the time and then I am reminded that DC is an aging disease.  The more a cell turns over, the more damage occurs and the more disease you experience.  It's crazy.  This is a crazy disease with crazy consequences, especially when you have three!

I hate to wonder what's next...

Today, I also received two letters from our insurance company.  One was dated the 16th and the other the 17th. The first letter said that they had approved Shelbie's hospital stay from October 28th to November 3. That's nice of them to let me know more than two weeks after the fact. I just received it today.  The second letter said after closer review, they won't be covering the hospital stay or any of the tests!  Is this even fair?  NOPE. I hate Obamacare!  What a load of nonsense!  I haven't even received a hospital bill yet so who knows how much that is going to be.  Now, I have to go the rounds again and fight for coverage!  This is becoming my latest part time job.   The amount of money I have had to pay out above and beyond our deductible and out of pocket maximum is staggering...all because they refuse coverage after the fact.  It's insanity at its best.

And speaking of insanity...I've about arrived to that proverbial place.  This is where I usually say I can't wait for this year to be over but silly me...this disease will march on into next year.  I'm so excited to start a new debt load of medical bills in just 4 weeks.




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Friday, November 25, 2016

Giving and Receiving

In the spirit of this week of giving thanks, this post is about giving and receiving but it's not what you are thinking.

Last Friday/Saturday, Sam started getting sick.  It sounded like your basic, run of the mill head cold you get in October and wrestle with til April.  On Sunday, I was summoned by my Wasband that he had gotten worse and maybe a trip to the hospital was in order.

I went over to his house where Sam was, to assess the situation.  He had no fever, a wicked cough and a sore throat but that was about it.  Without a fever, I figured it was just a man- cold.  I teased him a little, got him some cold medicine, zinc, vitamin C, apple cider vinegar, ibuprofen for his joint pain and later in the day, took him some homemade chicken soup for them.  (Note: my Wasband is completely capable of taking care of a cold but he had been out of town for a few days and hadn't had a chance to go grocery shopping which is why I offered the soup.)

Sam said, "I really feel like something is wrong."
"Nah...it just sucks you have a bad cold."

He had a temporary job this past Monday so I made him go.  He worked 14 hours! Woke up and went back the next day for another 10 hour shift.

Sam never complained about how bad he was feeling.  We just kept living life.

This morning I was summoned again that Sam was getting sicker.

He came home and I ran him to the urgent care but still, I was certain it was a bad cold even though he kept saying he thought he had pneumonia.

The poor kid has pneumonia!!  What the heck? It's not just any pneumonia.  That would be far too easy! The real name is Mycoplasma Pneumoniae.  It is a unique bacteria that is highly contagious.  Incubation is 1-4 weeks before symptoms start but you are contagious during that time!  It's a bacteria that outbreaks about every 3-4 years.  Most people will never know they have it and worse case, get a cold.  The majority of the time, people never get pneumonia from it, just the basic cold symptoms.

Sam on the other hand has a shotty immune system so he gets to deal with the finer, complications of this bacteria.  It is very dangerous for him because his marrow is so suppressed right now.  He has nothing in the way of white cells or neutrophils to fight this.  He has several venous malformations in his lungs that already compromise his breathing and most recently, has developed a nodule in his lung as well.  The bacteria is a rotten one to get because it has no cell walls which makes it resistant to antibiotics. It's one of the smallest bacteria that lives and reproduces on its own and one of the few that can live without oxygen. Small germs like viruses can only live and reproduce inside another cell. If it isn't controlled quickly, it spreads to other parts of the body like the ears, nervous system, GI tract and heart, affecting the lining of the area around the heart and brain which causes encephalitis.

Sheesh...of all things!  So far, the only other place they know it has spread to are his ears.  Poor kid has a pretty nasty ear infection and throat infection.

I feel terrible because of all the people he may have shared this with not knowing he was even sick!  In this case, it's embarrassing to be the giver but honestly, it stinks to be the receiver too!

When my kids were little, I would get so angry when friends would bring their kids over to play and they have a gross, green runny nose!  Or they would say, "She threw up last night but she's fine now." NO!! Why?  My kids get the 24 hour stomach flu and they puke for days and days! It got to the point when I would have a list of acceptable excuses why we couldn't have play dates or any interaction, really.

So, I'm embarrassed that we are 'those' people!  Ugh.  The Wasband has a house full of company too! I'm sure everyone will be fine because they are robust, healthy people. the doctor assured me that everyone won't even get a cold.  I worry about Spencer with lungs that barely function, white cells that do not function, not to mention his heart that beats to its own drum and of course Shelbie.  So, far, they have all been just fine.  Not even a sniffle.  By now, it's too late to confine him to a room and pull out my bleaching regime.

What a rotten deal and what's worse, is now Sam has entered the twilight zone where he doesn't get fevers that signal his body is fighting something.  That is what I have always relied on to know when to panic.  Without a fever, its nothing to me.  I don't even know how you take care of people who don't mount an immune response.  Deep sigh...

We are going to treat it with a Z-pak in hopes that this gets rid of it.  If he isn't getting better in the next 48 hours, he will find himself in a beautiful suite at the hospital...probably in Utah.  At that point, the next step would likely be IV steroids, antibiotics and plasma transfusions.

Well, at least we avoided the hospital on Thanksgiving.  That's some kind of something to rejoice in!





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Thursday, November 24, 2016

Thanksgiving

Today is Thanksgiving.  In fact, it's 2:30 in the morning and I am still awake.

I'm not making pies, or prepping the bird.  I'm not busy cleaning for company to arrive or finishing up the laundry.

I had planned to be in bed 6 hours ago.  I had big plans for a quiet day as the kids are at their dad's for the rest of the week.  I was selfishly looking forward to doing nothing.  Well, not nothing.  I had some things planned that have been neglected the past few months.

As is usual and customary, making plans is an activity in futility.

Instead of a quiet night, I ended up working until very late.  At nearly midnight, while I was still at work, I got a series of text messages from Shelbie. (The kids are at their dad's for the holiday.)
 She felt like she was having a heart attack or another stroke.  She was in extreme pain in her left jaw and it radiated down to her shoulders and arm.  She was pretty scared, as is to be expected after the month she has had.  I was pretty nervous myself.

We texted back and forth about what to do.  It's a sad day when you spend over an hour trying to decide how you will get treated if you go to the ER.   The first time these symptoms happened, I took her in and the doctor made her think she was having an anxiety attack.  She clearly was not but he also wanted nothing to do with novel idea of listening.

The second time, she had these symptoms plus an actual stroke, I took her in and the ER doc tried to convince her she was experiencing a migraine.

So...why would we go back there?  It's not so much that I don't think the doctors are smart enough to help, it's that they aren't willing to listen and help.  If they would just engage in the process and listen and think critically, it would be a much better experience for all of us.  And, it's not all of them just a couple wing nuts that spoil the experience.  I realize 24 year olds don't have strokes and heart attacks but nothing about her health history resembles a normal 24 year old.  It isn't like they are just meeting us for the first time ever!  They know our story and their ignorance and patronizing way stings even more and makes us feel so 'other'.  I hate that!  I won't put her through that either.

Yesterday was her first treatment on the increased dose of Plasma.  The last two events also happened on the night she received her plasma so I'm thinking that she has started to have reactions to the plasma!  This is bad news on so many fronts.  Our immunologist had wondered if the plasma was increasing the inflammation in her arteries.  With that increased reaction, the vasculitis becomes so much worse.  Tiny clots form, the artery clamps down or worse, scars and she is prone to clots and strokes.  Hizentra has a black box warning for creating clots and causing strokes!  Ugh.

The plasma is the gold standard of treatment for her condition of CVID and vasculitis!   They were hoping that by increasing the dose, they would be able to get things calmed down but that doesn't seem to be the case.  Without the plasma, so many things will run unchecked in her body and it's anybody's guess what will happen then.

Our team said that if the plasma didn't turn things around on its own, then we would need to seriously consider a few months of chemotherapy to destroy her immune system.  I can not even go there... not again!  That would mean a port would need to be placed but that is going to create extreme issues with her fragile arteries and then all side effects of chemo.  Aye, Aye, Aye.

So, instead of getting some much needed rest and down time, I am sitting here waiting for the phone to ring.  I spoke at length with my Wasband and we are on the same page.  We have loaded her up with anti inflammatories in an effort to calm down the likely spasms in her vascular system.  (according to the latest theories anyways) pain meds and even some meds to help her sleep.  I really didn't want her to be alone so the boys, bless their heart, are sleeping beside her to make sure she doesn't need anything.  If none of the medications I concocted work, and her symptoms continue to get worse, then we will go to the hospital.  I have to ask myself...why am I the one trying to think through this process of calming things down?

I realized tonight that we need our team to write up a protocol that we will keep at our local hospital so I don't have to be the one with all the answers that are really just a shot in the dark.

The truth is, I am scared to go to sleep.  I am so tired and I'm afraid if they call to have me meet them at the hospital, I won't hear the phone.  Not only that, my mind is going in a million different directions and then all the worry of what to do next.

I can't even remember the last time we had a Thanksgiving that wasn't centered around a trip to the hospital or sick kids.

I wish there were easy answers.  It's such a complicated situation and one problem leads to another.

Nevertheless...it's Thanksgiving.  A day to express thanks and gratitude.  And even though today has not been easy, there is still so much to be thankful for!  So much!

Our very good friends sent a wonderful surprise a couple of days ago.  The box was large and the kids were unwrapping it and all I heard were shrieks of happiness and joy!  It was a big Gnome!  He is so cute and lights up.  I will take a picture and post it soon!  Shelbie adores Gnomes!  It's a funny story that I will share sometime but it was so fun to see her so excited and happy!  It was the best surprise!

About 6 weeks ago, Spencer entered a videography contest hosted by a 'Big Deal' Videography company in the area.  The winner was to receive a top of the line Drone and a job with the company.  The company sent those in the contest random footage of either an Alaskan Vacation or a Lake Powell Vacation.  They had to create a promotional video for either place, using the footage the company sent.  I believe there were well over 30 entries.  Spencer ended up in the Top 5!  Last week, he found out he was not selected as the winner...BUT...They sent him an email saying they loved his video and would be interested in collaborating with him on future projects.

I thought that was just a nice way for them to soften the blow.  Boy was I wrong!  They called back yesterday and told Spencer that everyone had actually thought his video was the best and though they settled on giving the Drone to someone else, they wanted to offer Spencer the job!  He meets with them on Monday and then they want him to be on board for their big Social Media Blitz that starts Tuesday.

I am so happy for him!  He has been struggling for so long and working so hard on his videography skills.  I am happy that he gets to experience a little success and see his dream start to take shape.  He deserves it so much!

Sam has been sick since Sunday but he seems to be on the mend finally!  Fingers crossed it doesn't take a wrong turn and become pneumonia like it usually does.

I feel blessed to be able to take care of my kids.  I feel grateful to those who offer me work, who share advertisements for my company.  It means a lot to me.

I could go on...It's important to focus today on just the good things that make all the other crummy things worth it.  I have very close friends who are not nearly as fortunate as we are right now and that is a humbling and reverent thought.

So, as you gather around a table filled with food and full of family, be grateful.  Be happy.  Glennon Doyle Melton put it this way, "Family are the people who keep showing up.  They may be a mess but they are our mess but we are a mess too, but we are their mess!"   I love that thought!  I will miss being with my family today, the ones near and the ones far. We are without a doubt, a messy family but we keep showing up for each other and I wouldn't want it any other way!  What a great, big messy blessing that is!

Happy Thanksgiving!
























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Monday, November 21, 2016

So that's why?

It's a great day when one of God's little mysteries comes to light, don't you think?  That great day happened to me on Saturday!

Shelbie and her friends had their Friendsgiving.  It was a blazing success from what I hear.  After dinner, they wanted to go to Lava Hotsprings which is a little over an hour drive from home.  Since Shelbie still can't drive (which I've decided is dumb...another day, another story) I got to take them down.  It was dark when we left and even darker when we arrived.

The hot pools are outside and there are three large pools of natural springs, hot water.  They have some canopies over the pools, lights to create a nice little mood for soaking with 200 of your 'closest friends', (who probably hadn't showered on their way into the pool), on a 40 degree Saturday night.  The steam from the pools was heavy at times as the hot water met the cold night air.

I'm realizing that as I get older, my germaphobic tendancy gets worse or maybe it has nothing to do with my age and more to do with the fact that my germaphobic tendancy is just getting worse. I was ready to leave after about 5 minutes because as I looked across the pools with people crammed in there shoulder to shoulder, I was sicked out!  It looked like we were all simmering in a vat of human stew!   Bleh.  Gross!  It might not have been so bad if I hadn't already worn myself out trying to get changed in the women's restroom when there were 6" cracks between the dividers of the stalls.  What is the point to that? Makes me wonder if Peeping Tom designed those.  Sheesh!  People just look so much better with clothes on!  It was exhausting trying to keep pressed up against the door of the changing room so that no one could tell a human life was in there.  It's always embarrassing when someone catches a glimpse of you and the whole crowd leaves in droves, running and screaming for their life! For the record, all the women were complaining about the changing rooms!

Anyways, that's not the story here...but that paragraph just hit on several tales I could tell about my dysfunction!

So, I was sitting beside three people who were having the most entertaining conversation which I was thoroughly enjoying.  Now...they used some tasteless sort of words so if that offends you, turn back now!  I'm a big fan of calling body parts by the name science intended for them to be called, not what society has deemed an appropriate version. When I hear words like they used, it screeches in my ears, yet to change the words, all humor is lost.  So, here goes...

A guy and two girls were sitting there and these two girls, I judged to be about in their late twenties, early thirties.  They were a little rough around the edges, had a myriad of passions they felt inclined to needle into their skin and they had been greatly blessed in the way of curves.  I looked like Ethiopia next to them.  They probably could have mistaken me for the railing on the edge of the stairs.  I was afraid someone might trip over me! If I go there again, I'm going to put that orange reflective tape on the outline of my body to alert people that I'm there!  This is an important image to sear into your brain at this point in the story.

Girl one says: "I use to be so afraid of water and swimming!"
Girl two: "Really?  Why is that?"
Girl one:  "I don't know, I just felt like I could sink at any minute but then I got boobs and I wasn't scared anymore.  I just float now!  There's no way I could sink, even if I wanted to."
Girl two: " Oh, ya, I know what you mean! Boobs are God's way of saying 'You're going to make it!'

Oh my gosh!  The crazy thing is, this was a dead serious conversation!  They didn't laugh or even snicker.  No 'Ha ha' or 'LOL',  They just carried on to the next in depth topic.

But really, I think they unlocked the mystery of why I always feel like I'm drowning in life!  That must be it!

I was not blessed with the same message from God as they were...if you catch my drift!  My 'girls' are still in training!  They have been since I was 12.  I think my mom just took me on a pity trip to buy a training bra because all my friends needed one.  I didn't need one, nor did I want one but it seemed the culturally acceptable, hopeful thing to do! If you buy it they will come sort of thing... I didn't realize back then that she was actually buying me what she thought would become a life preserver.

  No one told me!  It's a shame I had to find this information out at nearly age 50, in a dark corner of a hot pool, some distance from home, by two total strangers I was stewing with in the steam!  That's just not how I wanted to find out!

Well, life isn't fair..you sink, you swim.





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Sunday, November 20, 2016

All the light we can not see

Do you spend much time looking at the night sky?  We just had the opportunity to see the Super Moon but honestly, I missed it.  I was distracted and when I did remember, it wasn't the optimal time and clouds hid the moon, super or not. All I saw was a cloudy dark sky.

Spencer recently took this picture of the Milky Way at night, up in the mountains about an hour from home. He loves shooting pictures at night.  By leaving the shutter open, he is able to capture amazing images like this as his camera collects all the light from the stars.   This picture has not been edited or changed to create more or less than what you see.


When he showed me this picture, I was amazed.  I couldn't stop looking at it.   How many times do we look Heavenward and see nothing but a few stars, the constellations we learned in 1st grade and maybe a glimpse of the Milky Way if the moon and clouds are just right.

I can't help but think about how this picture is a metaphor for life here in mortality.  It is so easy to be distracted, weighed down, even worldly in our pursuit of some definition of happiness and joy.  Troubles toil and trials come and we can so easily become beset with darkness that surrounds us.  We offer up prayers to Heaven in hopes that He will rescue us in our first, fresh moments of despair and angst.  When all we see are more problems, we give up, curse God and think he doesn't care.  We become exasperated with His silence and wonder what the point to a heartfelt prayer was in the first place if he isn't going to answer?

Remember back to summer?  You look up on a warm summer's night when the air is still and crickets keep time and contentment rests gently all around, and the big dipper sits right where it always is in the night sky.  The Big Dipper is predictable and easy to spot. We think that God is too.  We have in our mind, what seems to be the easiest way to fix our problems yet the easy way never comes.  God isn't about shortcuts and easy ways out just because we are.

This is a lesson I have learned over the years; God is never where you expect him to be but that doesn't mean he isn't here, close by, filling us with light and love.

Like this picture of Spencer's, His light is always there!  His love surrounds us in ways we can't even see!  Step outside tonight, look up into that dark sky...look at all the light you can not see!  Isn't it amazing and miraculous?

I know I have a long ways to go but I have tried to see more clearly, all the ways I am being blessed even when it seems there are no blessings to be had.  It's a powerful image...an astounding thought.

Today, in church, we talked briefly about the miracle of Jesus giving sight to a blind man.  Now, if I were in the business of granting miracles, I would probably, simply, perform a miracle.  Like, touch the blind man's eyes and voila!  He has sight.   Simple, straightforward, even predictable.

But not Jesus...He first spit into the dirt, made a clay with that and then rubbed it across the blind man's eyes then told him to go wash it off in the Pool of Siloam.  That's a little complicated don't you think?  It struck me in class that this is exactly how we should consider God to work all the little miracles we expect and require of him.  He isn't a Wizard.  He doesn't wander through our life with a magic wand, striking all the bad things into better.  He teaches us.  We have to trust Him, feel after Him, obey Him.  We have to look for him and when you don't readily find him where you think he should be, look harder, he's there.  He will be found exactly where he needs to be, working on a masterpiece of sanctification.  Step by step...he comes, miracles are felt in all the light we can not see.

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