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Showing posts from 2016

Here we are

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 s…

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…

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 ha…

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.



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 m…

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.
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…

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 bu…

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…

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 …

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 unconventi…

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 ha…

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…

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?


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 he…

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 t…

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 scream…

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 yo…

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 s…

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 …

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 s…

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 …

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 ma…

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…