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Showing posts from May, 2017

More testing

I think the last of the immunology tests are rolling in so now we wait while our team decides what to do.  It's pretty clear that Sam's immune system is in rough shape.  Spencer's may be a smidge better but not great.

No word yet on Shelbie's tests that are still pending at Duke on the Adenosine Deaminase Deficiency.  I'm guessing that test takes a chunk of time.

I was surprised to find that Spencer's cardiologist actually posted something into MyChart.  In the past two weeks of monitoring on the loop recorder, he has had 6 events of tachycardia or bradycardia, each one to be of significance.  That's a little disturbing.  His remarks are that he will continue to watch him closely.  The doctor even included images from the recording.  At one point, Spencer's heart rate dipped into the mid 30's!  I didn't even know a person could still be alive with a heartbeat in the 30's.  Apparently, my boys are defying the odds.  We see the cardiologist …

Truth or Dare

We have had such an unbelievable week...gas leaks, carbon monoxide leaks, mice infestations, and this morning, I woke up to a racket in my backyard and found a herd of stray cats back there!! In my 6' high, fenced off yard. The cats looked a little beat up...seems they thought my yard was a safe haven.  I think that's a bad omen to have mice in your garage and stray cats in the backyard...Oh well.
I have been consumed with STORY this year.  Each day, I step into a story, either my own, or the story of someone around me.  We are all a part of each other's story, even if only in a passing role.  I have gotten tangled in May's story.  Every day, I take up my place in the story of my kids and every day, there's a stranger or two who crosses my path and I become part of their story too.

Here's a funny hair.  Over the past year, I've been letting my hair decide what color it's going to be.  I am mostly grey and pure white now and I have grown ti…

Another Gas Leak

We got everything taken apart and put back together again by last night. It was tricky I guess, because it took three men to do the job.  I think the tricky part was getting the slope right in the main duct that joins the water heater to the furnace.

They assured me that everything was fine and I didn't have to call the city for an inspection.  They turned the gas back on to my house and I hesitantly decided that we would stay home last night.

This morning had to catch up on laundry, dishes and getting the house back in order.  We had a horrendous wind storm here yesterday my house was full of dirt because the workers had left my front door open because the door handle broke!  (Insert eye rolling here)

This afternoon, I thought I could smell gas again but that seemed impossible since they went through everything last night.  It wasn't long before the smell was filling the main floor, not just the basement so I called the company back that did the work yesterday.

Sure enough…

On Second Thought

Years ago, I read a book called Practical Intuition.  It's about listening to your gut...the first time.  I have worked on this over the years, off and on.  This year, it's something I've been working on.

That first thought I have about anything...I act on it, if it's something to be done, or I'll write it down, if it's an idea or direction for my life.  It's been an interesting adventure.

Today...I'm a little overwhelmed with my first thoughts but glad that I didn't wait for my second thought.

It's been a weird day...Spencer has been out of it all day and slept on the couch for more than awhile and when he was awake, he wasn't really awake.  I kind of thought he had overdone it at the trampoline park last night.

I have been so tired all day, dizzy and a headache for the 7th day in a row.  Between us, we've almost emptied a bottle of Advil which is odd for me to have headaches.

I went down late this afternoon to get some stuff out of…

The Bathroom Wall

Sometimes, I wonder what in the world I am doing here.  I'm not entirely sure my purpose, my plan, or what gives my life meaning.

At times, I feel like all we do is exist on a big bathroom wall.  We carve our name into the powder coated metal that is already rusting in the corner of a forgotten gas station in the middle of nowhere on the way to who knows where, and leave our mark...a subtle note that we were somewhere, we existed, and something inside us, urged us along to be seen...right there on the bathroom wall...or on any old wall for that matter.

The more time I have spent with May, the more I realize that we all want to be seen.  We want to be seen beyond our crazy, in spite of our walls and illusions of okay.  On every visit with May over the past 20 years,  we say our goodbyes and she says, 'thank you for remembering me.'  and inside, a little voice of my own whispers, 'thank you for remembering me.'   With every piece of paper she stuffs into her heavy …

Dreams for Sale

What does a dream go for these days?  I suppose it depends on the dream.

It's never easy to sell out; trade in a dream for a different model...

Today, I found myself wading through dreams...some more profound than others.  Some were sold and some are incubating til the time is right.

I love that I got to step away from the computer and sit and watch Sam showcase just a smattering of his Parkour skills at the Gymnastics Center.  Today was the equivalent of a recital for the gymnastics world. Sam works hard and his little struggling heart works harder and his lungs burn and his muscles ache but that's the price of a dream these days,  for Sam at least.

Spencer sold his dream last night.  His van is gone.  The beloved  1985 Vanagon, the one that we all got attached to.  The one that was suppose to carry him out of this world and into one where he could explore and live and expand.  The time isn't right for that dream.  He found that he couldn't gather the resources to out…

Medical updates

Some of the boys' immunology tests are starting to roll in. It's times like this when I try to decide how much I love the 'MYChart' concept.  You see the results long before you ever get to talk to the doctor about the findings.  It can be a mental challenge more than anything.

Immunology testing is hard to interpret!  There is not one familiar term and it's not like they are measuring white cells- at least the neutrophils or granulocytes I know all about.  It's complex.  So, I can't say for sure how things are looking.  I could easily tell that Sam has not held titers to any of his immunizations and that is not a good thing...I know that.  Spencer seems to be looking in better shape than Sam.  I was actually hoping his immune system would hold some key as to why he can't eat anything without getting sick immediately afterwards.  Maybe it does and we'll just have to wait.

I have blown it this week in any follow up appointments.  I was suppose to g…

Mothers day 2017

For the first time in...oh...I don't know...a million years at least, Mother's Day was tolerable!


Because it was Sam's birthday and I got to spend the day doing what I love, taking care of the people I love.  I mentioned some things from our rough week, there were other things I'm not really going to discuss at length but it put a whole damper on his birthday weekend.  I tried really hard to make it fun but there was a definite current of sadness that showed on Sam's face.

I don't usually go to church on Mother's Day but I had to play the organ which still brings me a great deal of anxiety but right after, I left.  I picked up Shelbie and we went down to see May and take her some chocolate.  She was in really good spirits this week.  A bit confused but she seemed to have a let a little of her resistance to the situation go this past week.

We hurried home and I finished getting a big dinner made and put the finishing touches on Sam's cake.  I invit…

19 Years and Counting

Today is Sam's birthday!  19 years old!

Last night, we went to his favorite restaurant Buffalo Wild Wings for a little birthday dinner and then came home to open his presents and have all his cousins over for S'mores and games.

I love these kids.  They are technically not my niece and nephew, they are my Wasband's but they still call me Aunt Kath and they come over a lot.  I love that they are all here in town going to school and that they get together often to hang out. I'm glad I didn't have to divorce them too!  I love them and I love their parents!  There's always a lot of laughter and fun when they come over.  So, Sam had a fun night in pre-birthday celebrations.

Sam has had a really tough week!  His heart is struggling and the doctor is concerned that he may need a pacemaker.  His heart rate is lower than ever and at our appointments this week in Utah, the doctor couldn't get a steady beat, lots of extra beats going on.  His blood work is also not …

I think we're going to be okay

Maybe I've always felt this way but maybe not, I don't remember.

I realized today, that it's May 10th.  The day I got married for time and eternity a would be, 26 years ago!  26 years!   This coming Sunday is the day my Wasband called it quits and 21 days later, a judge agreed and 12 years from then, here we are.  Still stumbling along but still here nonetheless.

Of course, I still have plenty of thoughts left about these days I mark with a number and a feeling.  Plenty of regret.  Plenty of wondering what our family would be like if things had of worked out.  Plenty of wondering what I would be like.  Different.  We would be different for sure.  Better?  Who can say but for sure, different.

Last night, I had a thought, the kind with a little decidedness behind it, that we are going to be okay.  We might just make it.  It was strange to me, that this is the feeling that surfaced without coaxing, without convincing, just bobbed it's way to the surface of the churning th…


It goes on...Life that is.

I need to get back to my daily writing.  It's much easier to journal when it's done daily...hard to believe but it's true.

Anyhow...Had a bit of a surprising weekend.  Shelbie ended up in the ER Saturday evening.  She had mentioned earlier in the day that her leg and back were bothering her but other than taking note, I went on with my day and so did she.  By 9 that night, she was pretty miserable and asked to go to the Urgent Care.  I was pretty concerned that what she was feeling was nerve pain and wondered if those large lymph nodes or the granulomas in her abdomen were getting larger and putting pressure on some nerves so I opted for the ER.

The past 6 months, it's been a crap shoot going to our ER.  For over year, they had awesome docs staffed and it didn't matter who we ended up with, they were kind, compassionate and competent.  Now, not so much.  There are two docs we always seem stuck with and they are not that great so I was …

Weekend Update

This has been a memorable week!

Tuesday we had a little neighborhood action.  Strangely enough, I was home from work early and I noticed Police officers milling around but that happens every now and again so I didn't think much of it but then I noticed a couple of people wandering around, then a few more so I went out to see what was going on.  A 10 year old girl was missing.   As I got closer to the police officers and the father of the girl, I realized that I knew the father but didn't realize he had moved in down the street two weeks ago.

I talked to him briefly and then followed them back to the main road where more police officers were gathering.  Me, along with a few other neighbors stood back as the police gathered around one of their cars and talking on the radio.  More people gathered and more chaos started to ensue with all the extra bodies standing around so I approached the officers and suggested that perhaps they could tell us all how to help.  I also asked if an…