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Showing posts from June, 2015

Another SDS Angel

Yesterday, the Shwachman Diamond Syndrome world lost another sweet soul. She was 52.  One of the oldest living SDSer's and diagnosed back in the day by Dr. Shwachman himself.

While I didn't know her personally and never had the chance to meet her, I knew her mom.  Today, I want to pay tribute to her.

Some 20 years ago, I sat at Primary Children's hospital with Spencer and my husband sat at University Hospital with Shelbie.  The same afternoon.  Tests had previously be done on each child respectively.  We were at different hospitals because it was thought that they each had something completely different.  Shelbie was seeing an Immunologist and Spencer a Gastroenterologist.

We met up later at the GI's office to get the results of Spencer's testing.  I will never forget when the doctor came in.  She carried in her hand a single piece of paper telling me what my son had.  As she spoke, it became more clear that indeed, Shelbie had it too.  Shwachman Diamond Syndrome.…

Defending and Protecting

This subject has been on my mind for over 6 months.  I have written countless pages on the topic in my notebooks.

Today is the day, I think I want to make sure it gets to my blog.

Defending and Protecting.

I heard this idea several months ago when listening to a talk by Byron Katie.  I think I may have mentioned her before on this blog.  She is a public speaker with the intention of ending suffering.  Suffering of all kinds whether it be suffering inflicted upon us, or suffering we inflict upon ourselves and everything in between.

She has this to say about the difference between defending and protecting.  'Defense, is the first act of war.  When you try to defend, you become part of the war.  You spend more time in pain, anxiety, fear, restlessness to the point that you are "mentally running the world and asleep in your own."

If you are into social media even in the least bit, you will see that there is no shortage of defense in the world today, especially in light of…'s good.

Well, it only took me half the day but the new blog header is up!

I like it.  It's clean, simple, uncluttered...sort of where I'm at in life.   Trimming off the 'fat' of life.

This year has been a year of change...without a doubt.  Everything is in flux.

With all the changes, I've come to realize that not only does the blog need a makeover but so does my life.  I've enjoyed a couple of classes I signed up for this year.

I loved the Thrive online class by Arianna Huffington.  Though I didn't participate in the online discussions, I did manage to get through each class.  It's about making the changes you know you need to make in your life in order to change and get out from under the ongoing stress.  I loved her ideas on meditation, unplugging from technology, wisdom, wonder and giving; all in hopes of thriving in life, not just surviving.

Everyday, I have made attempts to spend a few minutes just being quiet and still.  It's been like a big sigh.

Finding Jesus

Today, I sat at Rehab waiting for Shelbie.  I was just sitting there when a gentleman came up to me and said, "Have you found Jesus?"

My first reaction which isn't always the best reaction was...Oh, I didn't know He was missing.

I didn't really say that out loud, I used my 'inside' voice.

My actual response was, "Yes, I have found Jesus."
"I knew it!" he said excitedly.
"How did you know that?" I asked.
"Because you smile all the time.  People who have found Jesus smile no matter what." He explained.

We had a little chat about life.  Such a nice guy.  He said people had been talking about Shelbie and our family.  He was sad that such a young girl had to be here with all the old people who have worn out their lungs and heart.

I said, "It's not that sad.  She likes it here.  Everyone is so friendly and so much fun!"

He went on to tell me about the 4 heart attacks he has had, one stroke, COPD and flat li…

Just like that...

I can't believe I have missed nearly a week of blogging.  It's been one of those weeks that has been crammed with everything that needed to be done at the same time.  I've been burning the midnight oil and then some.  In that past 48 hours, I have only gotten 6 hours of sleep!

So, here's the run down of the highlights.

We've had hospital appointments every day this week but Tuesday.  Tuesday night, I left on a little adventure.

I barely go anywhere without my kids.  This year, I've actually taken two road trips without my kids. It's interesting to be alone after so long of having company.  It's so strange not having someone keep track of the music we listen to, the temperature in the car, the temperature in the hotel room, where we stop, when we eat, what we eat; it's different.  I'm not use to it!

Anyways, my destination was Salt Lake City.  I've been talking to some people in Colorado who have a machine that realigns the frequency in you…

Father's Day

Father's Day marks the last of the run on 'hard' holidays to celebrate.  Why?  Well, today marks 10 years I've been divorced.  
Mother's day was the day he told me it was over.  Father's day, it was final.  We did what most divorce couples do...follow a strict visitation schedule set up by some random judge. 
This year, things have been different.  He is divorced now, from his second wife.  She always hated the kids and I and hated the idea of being nice and civil to people.  Now that they are divorced, things are different for our family. 
 We spent Christmas Day together as a family.   We spent New Year's Eve together as a family. We spent Mother's Day together as a family.  Today, he invited me over to have dinner with all his nieces and nephews and of course our kids.   I have not been feeling very good yesterday or today so I just went over for a short time.

Before I left, Shelbie was saying how it feels weird that we do so much together.  She thi…

I would rather...

Watch my kids go through bone marrow biopsies than watch Shelbie struggle one more day at pulmonary rehab!  I can say this with 100% certainty because there was a time when they always let me watch the bone marrow biopsies on all three of my kids!  Always!  Those were the days!   It was hard to watch and painful to watch, even though most of the time, they were asleep.  I even witnessed twice, once for Shelbie and once for Sam, when they used no sedation!  Even that!!!  Was easier than watching Shelbie at rehab.

      It's nothing new for her to say she is short of breath.  My pat answer is, "Oh well, just take a break.  Slow down.  You'll be fine."

Seriously!  Today was wretched. It took everything I had not to cry.

At one point, the nurse called over the therapist and they were watching the computer screen, then one of them called out to Shelbie, "Shelbie, are you doing okay?"

"NO!"  She was gasping for air but she had oxygen on!
"We …

All at once

Sometimes, life happens all at once.

So fast and so's overwhelming.

Sometimes, it happens in the smallest of things...Like...

Seeing an amazing photo that Shelbie has taken.
Looking at Sam and seeing this amazingly handsome, well rounded young man.
Reading a letter for Spencer and feeling overcome with the spirit because his testimony leaves me speechless.

And then to think...these are my people!  I don't know how I became so blessed to have children like this.  They are loving and kind and special and it overwhelms me at times.  They didn't get to be involved in team sports, or piano lessons or gymnastics or dancing or honor classes and they aren't Eagle scouts or anything great in terms of the world.  They didn't learn the alphabet at age 1.  They weren't solving math equations while painting Picasso replicas before age 3. They never had a GPA of 4 or anything close really...

Nope...but they are so much more! Their talent and skill runs so much dee…


Today, I had an epiphany.  Thanks to a friend who helped me talk things out...

I've been thinking about the idea of Shelbie needing oxygen outside of therapy.  I've been thinking about how I have to keep hounding Sam to take his breathing treatments and...thinking about a story the respiratory therapist told me yesterday.

The therapist was telling us what was meant to be a funny story.  An elderly couple was in and the wife was doing rehab.  They put oxygen on her and then left to attend to another patient.  When the therapist went back to the lady, the oxygen was off.  This scenario happened over and over. She kept putting the oxygen on, when she turned around, the oxygen was off.

The therapist finally asked why she kept taking the oxygen off and found out it was her husband taking it off.  When she asked why, the husband said, "I just don't want her to get addicted to it."

It's a funny thought really...we breathe oxygen every day, how could anyone get addi…

The weekend review

This past weekend was the first weekend in 2015 that I had very little work to do.  It left for a lot of time to get caught up on medical stuff, yard stuff, other stuff and make some plans for today.

Here's a recap:

Spoke to one of my docs on Saturday and I do indeed have Lupus.  I started back up on the anti malarial drugs only they doubled my original dose.  This stuff is so toxic, I have to have my eyes checked every three months.   Remind me again why I want to do this to myself...sure, put lupus in remission and go blind in the process.  I decided to finally email our local Oncologist and Dr. Shimamura in Seattle.  I heard back from both of them today.  Dr. S is really sad to be leaving us and said she was going to call me personally because we have found our way to her heart.  She said we can always email her.  She suggested transitioning all three kids to her adult Hematologist friend in Seattle and the Cancer Alliance Center.  I have met the new doctor and I know they will …

Let's talk about...


It's hard being a woman.  Seriously.  We have to do some of the darnedest things like, oh, I don't know...give birth for one thing.  That's not entirely fun and enjoyable I mean, unless you love doubling your body weight in 9 short months, squeezing a watermelon out a hole the size of a lemon, get the life sucked out of you and other unmentionables.

We do it all like champs, it's just another line item on the to do list.  We rarely complain, we just git 'er done.

It makes me wonder about Bruce Jenner.  Why in the world would any man want to become a woman?  What kind of guy signs up for that?  Well, keep in mind, he waited until well after menopause to become a woman...wimp!  See, even a real man can't do what a woman naturally does.

But then there are mammograms.

Medicine has come so far but when it comes to mammograms, not far enough.  Is this really the best we can do?  I don't think there is another cancer screening test a…

Philosophy on life

Today, I was reminded about my philosophy on life.

1.  Do what you can.
2.  Live without regret

Do what you can...There are so many things in life that I am discovering I cannot control.  I hate that!  So, it becomes very important for me to look for the things that I do have some influence, choice, it what you may.

 I can't control the hardships of people around me but there is always something I can do to show love and support to them.  I can't change the disease my kids have, but I can take measures to keep them as healthy as possible.

There's always something to do what you can.

Live without regret...The worst phrase I have ever heard is...YOU SHOULD HAVE... or I WISH I HAD OF...regret sucks.  I do everything in my power to live without regret.  I find that as long as I am following the philosophy from above, then I don't have to face regret.

I have had experiences in my life that I am not happy about, proud of or really want to be reminded of …

Another Strange Day

It's been a terribly long time since I had such strange and funny days!  Today was another one.

I had a furniture rep call me to see if he could stop by and bring some promotional stuff over.

He knocked on the door and when I opened it, there was a dog by his side.  I invited him in and the dog walked politely beside him.

I had my dog Bentley, locked in my room so he wouldn't jump up on the guy but Bentley was not happy that there was company and he was not out there sniffing up his welcome.

This other dog was running through the house, eating my dog's food, getting dog toys out of the basket, jumping all over and laying in the dog bed.  He was just making himself all at home.  The furniture rep just kept rambling on and I'm thinking..."This guy has a lot of nerve bringing his stupid dog to my house and letting him get into everything!"

Meanwhile, Bentley is going crazy trying to get out of my room.  I politely interrupted the rep and said, "Do you min…

Old People Are Funny

Shelbie started pulmonary rehab today.  Neither one of us really knew what to expect.  It turned out to be quite an entertaining afternoon.

Shelbie is the youngest in there by at least 45 years.  It was packed with elderly people.  Some were on treadmills, some on bikes, some lifting weights...just a flurry of activity.

As we walked in, everyone said "Hi".  I mean everyone!  The nicest group of people I have ever met!  The therapist greeted us and whisked Shelbie away to get her set up with heart monitors, blood pressure monitors etc. then took her for a walk around the hospital.  I stayed in the room and sat at this large round table with two other elderly women.

Lady 1 said, "Is that your daughter?  She's so young!  She doesn't look a day over 15."
Me: "Yes, that is my daughter.  She's 22!"
Lady 1: "That's too young to be here.  What's wrong with her?"
Me: "She has a genetic disease that is creating holes in her lung…

The Journey

It's been an eventful weekend.

Saturday, I made an impromptu trip to Salt Lake to take Sam and a couple of friends to an amusement park for which they had free tickets.  I had a lot of time...a lot of time, to think.  In fact, I ended up sitting at a Barnes and Noble for 5 hours!  I spent most of that time working but had all sorts of thoughts going through my head.

Today, I attended the funeral of Santa, aka- Mike.  I had the same thoughts I had on Saturday.


 Today at the funeral, I got lost in watching people at the cemetery. Mike was a huge part of the scouting program and the Mountain Men Rendezvous organization.  His fellow Mountain Men were there in costume.  They did a special salute to him.  Once the program at the cemetery was over, the Mountain Men each walked up to the casket and laid something on top.  The items were things from the mountains; a sprig of pine, a pine cone, a hand made leather satchel.  Each man had tears in their eyes.  Several bent over an…

Lessons from suffering

Sam made it home from his little trip...sick.

Ahhh...a fever.  I guess I wasn't too surprised.  He was sunburned, tired and coughing.  He looked miserable.  Other than that, he did okay.  He said the hiking was fine but he did get winded several times and had to take a break.  All in all...he did great.

Today, the news of Mike is still sinking in.  I don't think it will seem real until his funeral.

Today, I cleaned a house for an older couple.  Such a sweet couple.  They are always so thoughtful and kind.  The husband has been quite sick.  Today, his wife told me he is being moved to Hospice.  So sad.  I wish it wasn't so.  Tomorrow, I am going to take them donuts for National Donut Day.  It's a small thing to do, a meaningless thing really but the smile on his face was priceless when I told him it was National Donut Day on Friday.  The relief in her eyes that I will be back to spend time with them was almost more than my heart could handle.  I recognized those tired …

Is the North Pole in Heaven?

It is now!

Today was the saddest of days.  My favorite person in the world passed away unexpectedly from a massive heart attack.  Santa Claus.  AKA...Mike P.

 It feels like I lost my best friend.  A family member.  There will surely be a hole that I will now have to fill with the sweetest memories of Mike and what he did for my family.

September 2007  Shelbie had already been through 4 months of chemotherapy. 
I hired Mike one Christmas when I had seen him at the Elementary school doing a Santa gig.  He was amazing.  He was so endearing and enchanting with his stories of reindeer and the North Pole.  He captured the magical feeling of Christmas.  His beard was real, his hair was white like the snow.  I knew that I needed more of him, his spirit.  I walked right up to him and asked if he would consider coming to my house to meet with my kids.

He said, "Yes".
I think I was more excited than they ever could have been at just 2 years old. Ever since that first Christmas, he h…

Cardio Pulmonary Rehabilitation

Today, Shelbie had her first Cardio Pulmonary Rehab session.  I had my doubts about doing this but it didn't take long for me to see the value in this.

I'm never thrilled about the hospital in the big city.  I hate it.  But every now and again, we have a nurse that really makes a difference.  Today, the respiratory therapist we worked with was amazing.  She had spent a fair amount of time researching Dyskeratosis Congenita before we arrived and she was pretty well up to speed.   She spent an hour and a half counseling us about what the care plan would be over the next three months.

I have always thought that I should limit the kids' activities so they don't 'wear' out their lungs.  You know, the more you stress them, the quicker the disease will progress.  I told her about my concern.  She set me straight on a few things which I was so appreciative of.   I love being taught new things.

She explained that a big part of your lung function has to do with how stron…

The Winds of Change

I told you so...the winds of change are coming.  They arrived today. Out of the blue.

I got a call this morning that our favorite doctor of all time, in all the world is leaving.  Dr. Shimamura from Seattle Children's is packing up her practice and relocating to Harvard in Boston.

What does this mean for us?  It's complicated and difficult at best.

Our whole team is being dismantled.  As of July we have no one but our local docs who know nothing.  I like them but they don't make the effort to learn about the disease my children have.  Dr. Shimamura was and expert in both Shwachmand Diamond and Dyskeratosis Congenita.  We were clearly led to her.  Now, I don't know what we are going to do. I was hoping for bone marrow biopsies to be done in Seattle in August but she is leaving in July.  There's not enough time to get it all set up.  We were waiting for Spencer to get home so we could do it all together.

There are only 4 DC specialists that I know of in North Americ…