Saturday, January 31, 2015

Casualties of life

I use to think the people blaming poor health, sleepless nights, depression, weight gain or whatever on stress, were just nuts.  Stress is used all the time as a crutch for poor behavior, or at least that is always what I have thought in my head.   And then, I would mutter to myself, 'You have no idea what stress is.'

I was shallow and inconsiderate of me to feel like this.  I guess God has a way of humbling you because without a doubt, I have been bit by the bug of stress!  It has turned my world on end.  I admit it...My name is Kath and I am stressed!  There, I said it!

Last night I got to work just as most of the employees that work in the office that I clean were leaving.  I know them just in terms of saying 'Hi' and 'How's life?'  One lady, who was leaving stopped to ask about my kids.  I clean her mom's house so that is our connection, our only connection really.   Well, I said we were hanging in there but things weren't exactly good.  She started by saying she knows what it's like to have sick kids and began to tell me about her son who has had 6 open heart surgeries.  6!  He was born with a congenital heart defect...His pulmonary arteries were attached to the heart in the wrong place!!!

Sound familiar?  How does God do this?  Just put near strangers in your life?  There's always a blessing in these happenstance moments.

I don't usually open up to people but things just poured out.  All the pent up feelings of anger and resentment, sadness... but mostly anger and resentment.  She got it!  She understood it!  She had felt exactly what I felt.  Boy, did that feel good to finally get some of that out and not look bad or rude or selfish or cruel...just receive in return, understanding.  No judgment, no lectures that I shouldn't feel that way...just acceptance!  Man...I haven't felt that in...well, I can't remember when.

She was the last person to leave and all the lights in the building were off.  When she left and locked myself in, I slid down the wall in a far off exam room and a had a good cry; just released a little pressure of the week.

This morning, I was still exhausted even though I had slept pretty good.  I was ready 45 minutes early for work at the temple but decided to just go and take my time getting to the organ bench.  I enjoy just sitting in the chapel for a few minutes before I start playing, it helps me slow down.  I started out on my usual route to the temple, about a 5 min drive from where I live.  15 minutes later, I realized I was in the middle of the country in a small Podunk town by mine!  I was so confused as to how or why I was in the middle of nowhere! I scared myself!!

I quickly hurried back to town because now, I would surely be late for my shift!  I got to the temple, found an awesome parking spot, walked in, through the foyer where about 25 young adults were waiting.  I checked in and headed down the hall to the locker room.  It was then that I discovered I had not zipped up one of my boots!  My tall boots!  One was zipped, the other was flapping off to the side!  I had no idea it wasn't zipped until halfway to the locker room!

What a dork!  I'm sure all those 20 something college girls and boys and a good laugh at the mess of a person who had just walked in!

Man, I sat on the bench in the little cubicle and had a good laugh to myself!

Yep...stress!  I'm blaming all this forgetfulness on stress. annoying!

When I left, I double checked that everything was buttoned, zipped and tucked.  What a day!


Friday, January 30, 2015

A mind bender

Good grief!  Life is hard and today was a mind bender like none other!

Sam  had a full day of doctor appointments.  One was with our friendly psychiatrist.  Sam has been struggling with depression since last May.  I found that as long as we could go to the gym every night and spend an hour and a half working out, he managed to get through each day.  Since he got sick with pneumonia back in November and then one virus after the other, he hasn't been able to get his work out in and now, he isn't allowed to raise his heart rate. So, he is getting bad again.  I just wanted him to have something for all the anxiety.  He doesn't have to take it but at least we have it as a tool he can access on the really hard days.

Well, we have had this psychiatrist for about 12 years and obviously, we really like him but we haven't needed him for the past two years.  Today, we had a lot to catch up on.  He had to be made aware of the new diagnosis.  I told him Sam had Dyskeratosis Congenita.  He looked it up right away on his computer and read through what the basics of the disease is.

When he was through, he said, "Wow are sick!  You don't look sick but this is serious stuff!  How are you dealing with this."

Well...before I go any further, I need to explain a little back story on Sam.  He has a learning disability called Dyscalculia.  This means that his brain does not process time passing, patterns, numbers and his processing speed is only in the 5th percentile.

This is the strangest LD I have ever known.  He can't process information, and time is irrelevant to him.  For the most part, we have become accustomed to it and have found ways to compensate and cope.   An example of this...a couple of years ago, we were doing back to school shopping and he couldn't figure out why I was buying school supplies when he had only been on spring break, not summer break.  I tried to explain that he had three months off, not three days...He couldn't wrap his mind around that.  To him, three months felt like three days.

So, back to the appointment...this doctor starts asking about all the things that could happen and said, "Aren't you glad none of these things have happened yet?"

I said, "Well, actually a lot of them have started and that is why we are here."

From there, things got bad.  I explained the trial we are facing with Sam's ever growing heart problems and he flat out started talking about dying and how there may not be a fix for these heart issues and he could die sooner than later or at least need a new heart and lungs.

I was shocked that he was going there!  I have always presented a sugar coated front to the kids, never admitting to them exactly the seriousness of the situation.  I watched the color drain from Sam's face.  It was as if he was hearing all this for the very first time!  I knew in that instant that his brain had no recollection of going over all this last May and several times since!  

I stopped the doctor and reminded him about Sam's LD and he said, "Sam, do you understand what is happening to you?"

Nope...Sam nodded that he didn't know.  This WAS all new to him!

From there, we got in to talking about school and what to do with all this missed time and how we were going to get caught up and the stress that it is causing Sam.

He said, "Why?  Why do you care about Sam going to school?  He's trying to figure out if he is going to be alive in a week and you are worried about catching up on school work?"

"Ya!" I replied, "Life happens but we can't be swallowed up in it.  We have to continue doing the normal things kids do.  We have to maintain 'normal' and it 's normal for kids to go to school!"

"Are you hearing yourself right now?  Normal?  You want normal?  YOU DON'T GET NORMAL...ANYMORE!  That isn't a choice for your family now.  You aren't normal.  Your kids are not normal.  They will never be normal.  They have a disease that no one even knows about, they are writing history and that is not normal.  You have to change.  You can't keep doing what you've always done.  You can't do what your friends do.  You aren't living in the same world as anyone anymore.  You aren't are different.  Be different.  Sam should not have to go to school just because it's the normal thing to do.  He can't handle that right now."

Wow...I didn't want to start crying but I did.  He's right.  I just think no one else has had the guts to have this hard talk and say hard things.  It was a huge wake up call.  All I have ever wanted is normal.  I didn't want our life defined by disease that I didn't even choose.  It was put upon us so fine...put it upon us but give me the hope of normal too!

I don't want to misrepresent him, he was saying this in a very caring, concerned way.  When I cried, he gently said, "Let it go, let normal go.  Your son is in a very serious situation, you have to understand that and feel that and help him get through this but it has to be in a unique frame, not normal."

I did not think I had the strength to lift myself off his couch.  I did not want to walk out to the car and sit alone with Sam and figure out what to do with all of this.  What a mess.

Tonight, when my Wasband got in from LA, he came right over and we started all over, telling Sam all about Dyskeratosis Congenita, what is means.  We gave him the facts and possibilities.  We explained again what is happening to his heart.  We were real.  It was sad to have to tell your youngest child that his heart may not make it and he may have to start considering life in a different way.  It was sad...did I mention that?

Sam was so angry that he was hearing all this for the first time!  "Why didn't you tell me this?" He really honestly, feels that...because of his learning disability, to him this is the first time he has learned of his reality with DC. It's hard to imagine living life like that. It breaks my heart to see him so confused and genuinely angry with me for what he sees as withholding information.  It hurt so much to have to go through it all again!  It was like ripping a band aid off a very raw wound and rubbing salt in it.

But, it was good.  It was good to finally admit that this sucks!  That it isn't fair.  That it is hard.  It is hard for Sam but just as hard for Shelbie to watch Sam going through hard things like she has to.

I'm not excited for the next few weeks.  The gravity of the situation is incredible to wrap my mind around.  I've never let myself go to this place of reality before, not ever.  This is all new territory.  
I really wish someone would write a book called, "How to watch your kids die for Dummies."  I have no idea what I'm doing.

Tomorrow, I have another meeting at the school to tell them what we are going to do with Sam.  Sam has decided that he wants to try to go to school but with a lighter homework load.   He really doesn't want to miss out on being with his friends.  For Sam to be on Homebound school, and not see his friends, well, that would worse than dying.  Sounds dramatic but it's true.  So, I will present this tomorrow to the school and see where this takes us.

In the meantime...I need to figure out how to make a living in the midst of all this emotional nonsense.  I am several days behind with huge deadlines looming, important deadlines for the big hospital job in Star Valley.  Ugh...I'm just not sure how I will do it all.  I guess with a lot of praying.

Thursday, January 29, 2015

For Today...

I've been up and at it since 4 am.  It's 9:30 am and what I wouldn't give for a nap but there is no time for napping.  Today is another big doctor day for Mr. Sam.

There is a part of the ER trip I left out.  The ER doc didn't tell me that there was blood in Sam's urine or that Sam's liver enzymes and glucose were extremely high.  Not just on the high end of normal but triple over normal.   Since the pulmonology visit wherein the doctor told me Sam's heart was 100% normal, even though I was looking at the abnormal paperwork, my trust in doctors has plummeted.  I use to take what they said at face value.  Not anymore, so I requested the lab work from the hospital before we left.

I was pretty alarmed to see those numbers as well as his abnormally high white cells.  I did a little research and the liver enzyme can actually be a pre-cursor to an upcoming cardiac crisis or liver crisis.  I felt really uneasy about just watching him so I called our cardiologist and hematologist in Seattle just to make sure I was doing the right thing.

I went to the school to see about pulling Sam out for the remainder of the trimester at least.  It's interesting to be faced with this.  Again, I'm really torn.  Sam has missed 5 weeks of school this trimester alone due to fevers, and pneumonia.  His immune system just can't keep on top of it all.  I feel like keeping him home til we sort out the heart problems will be better for his physical health.  Emotionally...that's another thing.  I know he needs his friends to keep him sane.  It's a real catch 22.

As I was talking to the school counselor, it hit me just how serious this situation is.  This is where the rubber meets the road.  That moment when you see the face of this disease for what it really is and all of a sudden, what happens to other people, is happening to you!  I didn't like that overwhelming feeling.  Today, everything seems too big and I feel too small.

At any rate, we are off to see a few different doctors today.  One appointment we will recheck the liver numbers and culture the urine since the hospital neglected to do that part...duh...Since when do doctors stop doing the basic protocols like culturing urine when blood is present...and we aren't talking a trace of blood but quite a bit of blood.

This morning I woke up with a terrific headache and sore throat.  So, for breakfast, I had two tablespoons of apple cider vinegar, 2000 mg of Vitamin C, 2 Cold Eze and then a tall glass of baking soda water...Yum, yum!!  Now I feel like I'm going to puke.  All in an effort to halt this virus from taking over my body!  I don't have any time for sickness right now.


Wednesday, January 28, 2015

29 Gifts Days 13-17

I've been trying to get this posted for a few days now...Sorry it's late.  Too much going on. 

Day 13- I actually had several other things planned and actually did several other things but this one just sort of presented itself so I chose this one to count.  I play the organ every Saturday at the temple. I got there very early and upon arriving discovered that the organist before me didn't show up.  I hurried to the chapel and started playing an hour early.  I continued playing for my shift so that was a lot of organ playing.   

Day 14, I treated some starving students to a surprise order of cinnamon rolls!   Starving students will eat anything!

Day 15 was a bust!!  I had good intentions, great intentions actually.  I went to a low income apartment complex to offer to take out their garbage.  I knocked on just about every door on one floor which was probably 18 doors and no body wanted me to take out their garbage but most of them were super rude about it.  One lady, when I told her that I was doing a service project,  actually rolled her eyes at me and then slammed the door.  I don't know what I said wrong!   Two people, answered the door without a stitch of clothing on.  Nothing!!!  One guy had sweat pouring down his face.  It was awkward and it was only 6:30 at night.  Another lady...different apartment, it was the same sort of thing, busy doing something totally naked.  It was like an hour from the twilight zone.  Not only that, with every door that opened, some horrible- dinner- gone- wrong smells wafted out.   I just couldn't keep going.  I felt like I was going to be sick so, I abandoned the project and went to visit my homeless friend.

I guess I really need to stop referring to her as my homeless friend because one, she has a name and two, she has a place to live...So, I went to visit May, my friend.  We always laugh when we visit.  It was a good time!  As I left the apartment complex, I looked up towards her window and she stood at the window, watching me leave and waving.  She's never done that before.  I had a feeling of sadness as I left her behind.  She seemed really lonely that night so maybe that was where I needed to be after all.

Day 16- This was a fun project but time intensive.  I had been planning this one for days because it took me days to gather 25 inspirational quotes, re-create them in Photoshop and then print and cut them all out.  This packet of cards was for a 13 year old girl with adult sized problems.  I don't know her, I have never met her and I don't even know her name.  Part of her story came up in a conversation with someone else who is directly involved with her.  They didn't give me all the details of her life, in fact all they said was they felt sad that she had nothing, no support system and was dealing with some very hard problems.  That's all I really needed to know and I got busy.  I gave them to the mutual friend who will then deliver them to her.  I also included a few little fun things to cheer her up!  I really enjoyed this gift.
Day 17.  This was one of those unplanned gifts.  I saw an elderly gentleman trying to chip thick ice off his driveway.  He was hunched over and didn't look like he was in any condition to be doing such a hard task.  I stopped to see if I could do it for him.  It felt good to get a little exercise and he was very appreciative. 


Our night in the ER

Okay, this disease is really starting to get on my nerves!!

Sam spiked a fever last night and his cough would not stop, literally, he could hardly catch his breath so I took him up to the ER.

I'm sure glad I did.  His white count is triple what it should be, he has blood in his urine and some liver numbers are all messed up!  What the heck? I am so tired of this...seriously!!  We need one little break. His blood pressure was 179/72 or something crazy high and his heart rate was 110.  Good grief.  

So, antibiotics, cough syrup and breathing school til who knows when.

Now, I get to start investigating why the liver numbers are freaking out!  It just never ends.  I was really hoping we were just experiencing a hiccup in the road but after the heart doctor yesterday, ER last night and all this...I'm beginning to wonder if this is just our new normal.  If so, I am finding myself to be quite ill prepared to take this monster of a disease on!

Ahh....not a happy camper tonight.


Tuesday, January 27, 2015

A Heart Update

Today we finally met with cardiology to go over Sam's Bubble Echocardiogram.  I was really apprehensive about meeting this new doctor but I was pleasantly surprised.  He is very quiet and methodical which I didn't mind.  At first, I thought he was too quiet and too methodical but towards the end, he laughed at my poor attempt at humor and that's when I felt we made a connection.

To begin with, I was having a hard time staying the moment.  My mind kept wandering and I had to keep re-focusing and remember all the questions I had for him.  As usual, things never, ever go according to my plan.  If things had ever gone according to my plan, Sam would have had surgery in December to fix the 'hole' in his heart.  That's all I wanted, just a hole.  I didn't really care how big of a hole, just a hole is what I wanted.  After today, I feel confident that there is not a hole in Sam's heart.

So, what is wrong with Sam's heart.  Let's talk about the easy things, like what's right with Sam's heart...Nothing.  Okay, that was easy.  Ugh...everything is wrong with Sam's heart!  He even failed the EKG. The rhythms on the EKG in December were normal, now they are not!

I'm kind of mixed up between frustrated and anxious so here is my lame attempt at explaining what is going wrong.

The main problems are as follows:

Building pressure in his right chamber
Building pressure in his lungs
Mitral and Tricuspid valve regurgitation
Aortic insufficiency

The Cardiologist believes that Sam has one of two problems, or quite possibly both problems.  He thinks that because the bubbles from the bubble echo crossed over to the right chamber after the 5th beat of his heart, that the shunting of blood is happening somewhere outside of his heart.  This would be a sign of pulmonary AVM's or lesions or fibrosis building up in his pulmonary artery.  This creates a narrowing of the artery and blood gets backed up.  In addition to this, he thinks it is very possible that the pulmonary arteries are hooked up to the right side of Sam's heart instead of the left and this would explain the increased pressure in his right chamber and dumping of oxygen in the right chamber instead of in the left where it belongs.  This would also account for the building pressure in his heart and lungs and the regurgitation of the valves.  All of that is caused from the building pressure.

The second scenario is just plain and simple Cardiomyopathy, or failure of the heart muscle caused from fibrosis.  The fibrosis gets in the valves, the arteries and veins and won't allow the valves to close properly and blood backs up.  The fibrosis eventually blocks all of the veins and arteries from the heart to the lungs and organ failure results.

The third scenario is that both of these are happening...bad plumbing and fibrosis.

Then, there is the issue of the electrical impulses that are quite elevated from the EKG today.   He's not really sure what is causing that.

The plan:

He wants us to go down to University of Utah and have a cardiac MRI.  With this kind of MRI, they can actually, rebuild his heart in 3D and look at all the tissue, veins and arteries.  It is the most thorough of tests.  The cardiologist who read the initial report wanted to do the Transesophageal echo but this doctor said that often misses the kinds of things we are looking for.  This test will be more comfortable for Sam but way, way more money!

If he has option 1, the veins attaching to the wrong side of his heart, they can fix that with surgery. Not an easy surgery but it can be done and has been done.

If he has option 2, nothing can be done and it is a progressive heart disease that will eventually lead to failure of the heart and lungs.

I guess I don't need to explain what happens if he has option 3.

As for the electrical problems that showed up today, he told Sam he has to curtail his physical exercise at least until we get this sorted out.  He said, "This is the kind of pattern we see in kids who drop to the ground playing basketball."  I really liked how this doctor avoided the words 'death', and 'attack'.  Those are all too common words used in relation to heart problems.  He could have used those words at least a hundred times today.  He did say, he hoped that Samuel 'giving out' while doing his sports was unlikely, but if someone came to him to tell him that it happened, he would have believed it.  So, that was kind of a mixed bag of unhelpful information.

I have been so busy today and this evening that I haven't really had time to process it all.  The feelings are all so distant right now since I've been so preoccupied with other things.

Sam's been really quiet since we left the hospital this afternoon.  He wouldn't talk to me and what he did say was full of sarcasm and sharpness.   After young men's tonight, he came home and sat down on the couch, reached his hands up over his head and said, "Mom, I just can't take anymore."  It was just matter of fact.  No emotion, no anger, no sadness...just...I can't take anymore.

"I know."  That was my lame response.

I know the sadness will hit in just a few short hours when I finally try to go to sleep.  This is a very grim reality.  One I have known we would face at some point but had hoped we could avoid.  These sorts of things happen to other people...not us!

Sam's been home from school today and will be tomorrow and probably Thursday too!  On Monday, he had a teacher chew him out for being at school with a cough.  He missed all of last week and half of the week before because of this crazy virus. A cough can last weeks more!  Even kids in the class were bugging him because of his cough.  We don't need this attitude from people on top of everything else going on so he's not going to school until maybe next week.  That sucks because it means I have to help him get caught up and I am behind on my own deadlines of work!

The Cardiologist suggested this afternoon that his pneumonia is back!  So, off we go to the doctor tomorrow!  Then another doctor appointment on Thursday for him and hopefully University of Utah next week!

I'm tired.  I am really, really tired.  Not just physically but emotionally as well.


Sunday, January 25, 2015

Where you stand...

I've been thinking a lot about perspective this morning.  Where you stand can make all the difference in the world, in a life, in a day, in a moment.  One moment, can be changed depending on where you stand.

Last week, it was Sam and Shelbie standing in just the right place, at just the right time when they were able to rescue a woman having a stroke.

This week, we watched the events unfold of a man who had committed suicide in his car, in the hospital parking lot. It was an eerie perspective from where we stood.  We discovered later, that the man was my Wasband's neighbor, Sam's weekend neighbor...he left behind 5 or 6 kids and a sweet and caring wife.   I think about where this man tired and trapped he must have felt to go to such devastating lengths to find peace and rest.

Last night, Sam was in Walgreen's with his dad picking up some over the counter medicine.  A desperate man, in need of pain pills, came in with a gun attempting to rob the pharmacy.  He too was suicidal as he announced his plans.  He fled through the back door, the police cornered him, multiple shots were fired and he died outside of Walgreen's.  From where they stood, and if the man had of opened fire in the store, he may not be here today.  As they were able to leave, they saw the man, face down on the ground, a life taken.  They were rattled but feeling deep gratitude that their lives were spared.   I sat at my desk at home and listened to the events unfold on a police scanner not knowing someone I loved was there, watching it all unfold.  It wasn't until I got a call from my Wasband that I panicked...even though they were okay.  It matters where you stand.  It changes things.

This morning, I checked in on my blogging friend Alisa.  She is in some horrible stage of Melanoma cancer.  I have watched her battle this with a fierce courage only a mother with three young boys could muster.  It's hard to stand on the outskirts of pain and just watch helplessly as a family is changed.  Whether she lives or dies remains to be seen but whatever the outcome God has in store, from where I stand, this family will be different.  Never the same.  I appreciated the perspective of her husband as he updated her blog.  He has always approached the unfolding drama of cancer with a touch of humor and sarcasm.  I'm sure he does it to protect his own, underlying emotion, so raw with fear of losing the woman he loves.  This morning, he admitted this wasn't so funny anymore...I don't want to stand where I am...just looking in on an intimate moment of a precious family.  Over and over I think of what her kids are feeling, her husband, her parents, her siblings, her in laws, her closest friends and it kills me.  I feel so sad for them as I watch this happen.  I want to fix it for them. I want to stand in a different I'm sure they wish they could as well.

I have thought about events that have unfolded in Colorado for Spencer and ultimately our family.  A couple has been involved in the testing of a machine that changes the frequency of cells in the body.  Spencer has tried it a couple of times and from what he reports, his pain is less.  It's interesting to read her emails to me.  They are full of hope...hope springs eternal depending on where you stand.  From where I stand, it's not the same.  It's complicated.  It's tiring.  It's a different kind of hope.

So, I can't help but think about where I stand.  Living with chronic illness can be such a lonely place.  What's worse than being lonely is being surrounded by people who remain at an arm's length away emotionally.  They will never know what it feels like to stand where I stand.  To watch my kids go through the things they do.  They will never know what it feels like to hear your doctor say that this is just how the disease progresses.

 I will never know what it feels like to stand where my kids stand.  Somehow, this is where it all breaks down.  Communication falls apart because you reach a place where there are no words to describe the myriad of feelings coming at you.  Emotions that should happen one at a time, come all at once.  When that becomes a case of emotional triage. It's going to take time to fix the mess I find myself in.  No one really understands where I stand.

So much has happened in seven days.  I have stood in a lot of different places.  Hard places, Sad places.  Joyful places.  Humble places.  Grateful places.  I'm not standing in the same world I stood in 2 years ago, 5 years ago, 30 years ago!  Where I stand is different.

Friday, January 23, 2015

29 Gifts Day 10-12

This week has been filled with some interesting experiences.

Day 10, I was pretty much stuck in the hospital until later into the evening than I had planned.  So, there was no way the gift I had planned would have worked.  So...I went around the hospital and filled the vending machines with change so that they all had credits on them!

Day 11 was pretty awesome!  The day before I was thinking about how glad I am that Shelbie is able to get IVIG because she has done so much better with infections since getting it.  Even though, I have a love hate relationship with the stuff, I am grateful for it...just not the miserable side effects.  

As I sat there for hours on end, I wondered about how I could show my gratitude.  Here in town, we have a Grifols Plasma Center, the same brand of IVIG we use.  I decided that I would make a bunch of cookies and drop them off for the people waiting to donate plasma.  

Well, I made them extra big so the recipe only made 3 dozen.  I figured that would be plenty...I mean, how many people could possibly be there on a Thursday night?  

Wrong!  The place was packed!  Crammed!  At least 45 people were seated and waiting to donate!   I couldn't believe it.  I got pretty emotional seeing that many people!  I told the girl at the counter what I was doing and she said she would have to check with her manager.  

After several minutes, he came out and took me back to a tiny room.  Again, I told him what I was doing and why I was doing it.  He asked about the disease the kids have so I gave him the watered down, Disney version.  He got all choked up!  I wasn't prepared for that! 

So, I was hoping to just leave the basket on the desk but the manager thought it would be better if I handed them out to each person and told them why I was doing it.  So...I did.  It was crazy in so many ways!  People were emotional, I was emotional and the whole time, the manager stood at the desk and watched me interact with these total strangers!  Many people said they would double their donating efforts and that it was nice to know people actually benefit from plasma. 

I was worried the whole time that I would run out of cookies when I got to the very last person!  I had just enough!  Exactly enough.  I couldn't even believe it!  

 When I was done, I thanked the manager and he asked me if I would be willing to come back and do a conference with his employees from this office and maybe another office in a nearby town.  I don't know what I was thinking but I said, "Sure."  I guess I will have my public speaking debut soon!

Day 12- When I was making the cookies for Day 11, Sam was teasing me that I always make a bunch of food but give it away and we end up eating leftovers or worse, have no treats for us!  It's true.  He's right.  Then he said, "And what are the rules of this 29 Gifts thing anyways?  Does it say you can't give a gift to your kids? Because, you could; that would be an idea!  You have three kids that like treats too!"  Ha ha...

For today's gift, I made this cute little tag and clipped it to a bag of chips then drove to the school and put it on the driver's seat to surprise him!  He was surprised alright.  He came home from school and was just sure that a girl had dropped it off to surprise him!  Ha ha ha...little does he know... Sam really is All That AND a Bag of Chips!
So, that's the latest and greatest!   Stay tuned as the project continues...


Thursday, January 22, 2015


Yesterday was IVIG day for Shelbie.

It wasn't a horrible day, in fact she was awake most of the morning and a little towards the end of her transfusion so that was different for her.  It took much longer and I'm not sure why.  We got there at the crack of dawn, before the crack of dawn in fact.  It did take a few tries to get the IV started so that may have accounted for the longer day.

It was weird having Sam home sick while I was at the hospital with Shelbie.  I had him check his fever and if it was still gone, I told him he could come up to have lunch with us.  He did and seemed to be doing better actually.  I kept him home today, just to give him one more day to build up some resistance.

I really appreciate our nurses at Infusion Therapy.  They really are among the best I've met.  They are compassionate, professional, and have a great sense of humor that we appreciate.  One of the nurses we always have, pulls double duty in that unit.  Infusion Therapy is also where the visiting specialists camp out and she nurses for them as well.   As it turns out, she will be the nurse for the cardiologist Sam will be seeing next week.

I am so apprehensive about meeting this new doctor.  It could be because I've had nothing but poor experiences with doctors lately so I'm a little anxious.  I just don't think I can take anymore attitude from spoiled doctors.  It could also be the fact that he was the only cardiologist out of a dozen that would even consider taking us on.  They say that like we are a bad thing...I will go to my deathbed not understanding why doctors say that about us.

I even asked the nurses yesterday if we were hard to deal I'm moving the bed and chairs all around the room!  ;) (it's a weird room they have us in for transfusion, it's a sizeable room but the bed is crammed up against the wall and the guest chair at the foot of the bed, kind of towards the corner.  It's horrible space planning because whoever is sitting in the guest chair at the end of the bed, can't see the 15" tv mounted 6 ' up on the I do a little remodeling after Shelbie is settled.)  Anyhow... they didn't understand it either.

I know I was going somewhere with this story....Oh, so, as this nurse was wrapping up the day, she came and asked me for Sam's health history and the name of the disease he has so she can have him registered before we get there next week AND she was going to prime him a little for me so he knows what he is walking into and hopefully will treat us better than some crazed, tired mom, Munchhausen mom.  I think that is so great of her and I will somehow have to thank her for thinking of us in this way.

So, that's the health drama for the week.  Pretty quiet.  Now we wait and see if Shelbie gets slammed with the headaches that send us to the hospital in quiet hours of the night.

I can't believe we are jumping back into the heart issues.  It's going to put me over the edge if this goes anything like December did.


Tuesday, January 20, 2015

29 Gifts, Day 6-9

Almost two weeks into the 29 gifts project and so far, I've been enjoying it.  

Day 6, Shelbie has been making thick layering blankets to add to her newborn props.  She was short a few balls of yarn and had no money to get more.  I surprised her with the rest of the yarn she needed to finish the project. 

 Day 7- Baked up some yummy chocolate banana bread for a needy friend.

 Day 8- I did something I rarely do...donate money to a cause.  I have done it before but not often.  I never even donated money to SDS however, I did donate some time and skill to several SDS fundraisers in Seattle.  The Dyskeratosis Congenita Outreach organization is trying to publish a book of clinical guidelines for providers.  This would be the first ever and would help doctors know how to treat people with Dyskeratosis Congenita.   Since it is such a rare disease, it is really hard to find doctors who are willing to take on your care.   It felt good to help even if it was a very small donation compared to what they needed.

Day 9- This was a fun project.  I made a birthday cake for a big time duck hunter.  I didn't think I could do it, after all, it meant sculpting dogs and ducks but I think it turned out pretty good.  I was happy with it but it was even better seeing the surprise on their faces when they saw it.

I'm excited about some of the upcoming gifts I have planned so stay tuned.


What's new?

More of the same old news...guess who's sick...AGAIN?

Sam.  Sam is sick again!  It's only been a week or two of feeling decent.

Of course, I'm probably making it up, caused it from worry, poisoned his breakfast or some fool notion I've been getting lately from our awesome doctors.  Still pretty much holding a grudge about that in case you couldn't tell.

I'm keeping him home from school indefinitely.  He just can't seem to catch a break and the last thing we need right now is for him to pick up a bacterial infection on top of whatever this is.  His cough is sounding so much worse today and I really, really hope pneumonia isn't back!  That would not be a good situation with his lung and heart pressure where it's at.  His immune system is having the hardest time keeping up with things lately but I know it could be so much worse!

Today was missionary letter day!  It was so good to get a great letter from Spencer.  He told the funniest story.  The kids and I were literally in pain from laughing so hard.  It probably isn't that funny to most people but since we can see Spencer's reaction and hear his voice as we read it and the fact that most of us in this family are sort of in a raw emotional state, it was extra funny..

Here is an excerpt from his letter.

 "The funniest thing of my life happened this week. We went to a lady's house to teach her and she has Alzheimer's disease.   She had this fat little wiener dog who could barely walk because his belly was too big.  Well, she also had an electric recliner she was sitting in.  The dog, whose name was Tinkerbell was laying under the footrest of her chair.  She decided she wanted to get up and started to lower her chair. The dog didn't have any time to move and it started to get crushed in the stomach by her chair.  I thought at first that she would realize and stop her chair but it just kept squishing her dog.  I said "Hey your squishing your dog!" and she tried to stop but only pushed it down farther and made things worse.  This whole time the dog didn't even make a sound.  Its eyes looked like they would pop out of its head and it was the funniest thing.  She finally got the chair up but the dog wouldn't move, so she prodded it with her foot and I noticed the dog had peed everywhere and it was having a seizure.   She thought it was no big deal but it couldn't move and it was shaking and foaming at the mouth and had a perma-fried half smile on its face.  So this whole time I was trying not to laugh out loud and just dying.  She held it on her lap and said he was fine but it just kept drooling all over the place.  She started to hold his head so it wouldn't shake and kept saying "good girl just breathe. " She said it happens often but we told her to take the dog in to get checked out.  All in all it was one of those things you had to be there for but it looked like  Scrat the Squirrel from Ice Age but fat, having a seizure and peeing everywhere."

In other missionary news, I got a call late Friday night from a family in Colorado where Spencer had been eating dinner.  They have partnered with a doctor in Colorado who has developed this system of dealing with pain and other things relating to rhythms in the body.  It's all based on the fact that every cell in our body functions on a the brain waves.  For the sake of time and space on a page, this machine aligns the body's frequencies.

So, they have only had a few units produced and they are in research and testing phase.  They told me that they had talked to Spencer about it and he was really interested in trying it out, so they did a session on him.  They want the kids and I go down to Colorado next week and spend a week there, trying this out.  It's not convenient for us to go there, plus, as long as Spencer is in that town, I'm not going anywhere near!  What kind of torture would that be for a homesick mom?

They are going to talk to the doctor and see if he will consent to sending me a machine and learning to use it over Skype and then doing some research for them.  I would be interested to see if it helps my arthritis pain.  More interesting than this, is what Spencer had to say about the experience.

"They were telling us all about this crazy idea that a man was inspired to make.  They showed us and I was asking them about it and what it could do for genetic problems.  They aren't sure because its all new and in testing but they have a way to cure gluten intolerance and lactose problems and pain and stuff like that. They hooked me up to it after dinner.  They just started by focusing on some pain points.  I have had a big problem with my knee for a while ever since I started working for Tire Factory and stuff.  It used to be really sensitive to the touch but as soon as it was over, I didn't have any pain to the touch.   It still slightly hurts when I exercise but I think after another round or something,  it could be gone.  Its a really crazy thing but the whole time we had the conversation and when I was hooked up to the machine, I felt really good.  For some reason, it just felt like I was supposed to be there.  Also, I  don't think I  ever mentioned this to you before but I have seen their house in a dream that I have had since I was a kid.  I'm not sure why or what it means but I thought that it was interesting.  They want me to try using it once a week so I will give it a go! "

This is the second time Spencer has been in this town.  He was not happy about having to move back there three weeks ago but I kept telling him, there is a reason you need to be there.  I'm still not sure what purposes God has in store for him but I know that Spencer has been pretty under the weather the past couple of months.  Maybe this is just what he needed to get his energy back.  I don't know if it works or will work long term but I trust his instincts.  It will be interesting to see how all of this unfolds for him and for us.

Well, that's it from the world of the walking dysfunctional.

Tomorrow, I will post the past few gifts from my 29 Gifts project!  I have some interesting things planned this week if it all goes as planned.  This weeks kicks off another non stop hospital and doctor tour between the two kids so, there may be some improvising.


Friday, January 16, 2015

29 Gifts Day 5

I have a 
planned out a list of 29 gifts but really, I am trying to be open to what comes up in a day or as I see a need arise, then I tackle that rather than something on my list.  

This is one of those gifts that just came up in a moment of inspiration. 

I donated 15 stuffed bumble bees and over 50 packages of stickers to CASA- Court Appointed Special Advocate.  
A CASA volunteer helps children who have been removed from their family for whatever reason, typically due to abuse or neglect etc.  I was hoping that they could cuddle this little Bee and know that someone was thinking of them.  I attached a little note that said, "Bee Brave and Beelieve that angels are watching over you."

The beginning of December, I ran into an old friend of mine.  I haven't seen her in probably 12 years.  She use to be a PAT- Parent as teacher advocate.  I enrolled in that program when Spencer was just three years old.  She would come to the house once a month and do development testing and activities with him.  I really enjoyed it.  Once Sam was born, she started working with him.  He really needed the extra help since he had missed many developmental milestones.

I'm not sure it was the parenting tips I enjoyed as much as the friendship I got from her.  She was there at a very hard time; the kids had been really sick and diagnosed with SDS, I was separated, then divorced.  Eventually, Sam outgrew the program and she wasn't able to come back.

When I saw her last month, she told me that since retiring from the college, she decided to start training to be a CASA volunteer.  She is the perfect person for that.  She has an older daughter with some major disabilities so she has a very soft heart.  Her adventure got me thinking about some things we went through last summer.

Sam and I had to be involved in some really hard things that involved a potential lawsuit.  Both of us were being prepped to take the stand as key witnesses and to testify against someone. I was nervous but Sam was terrified!  I remember the day of court, we sat on the bench outside of the courtroom and I prayed so hard that somehow, Sam would be able to avoid testifying.

As it turned out, the attorney's were able to reach some agreements before the appointed time of court.  I can't even describe how relieved and grateful I was.

Another court date rolled around this week, again and I thought of my CASA friend and how miserable it would be to be a child, torn away from your family!  I knew I needed to do something for a gift.

It was awesome delivering that package this morning to my friend!  We spent a lot of time catching up.  I told her the kids were finally, officially diagnosed with Dyskertosis Congenita.

Tears welled up in her eyes!  "Kathy, you were right all along!  Something was wrong with your kids!  I will never forget those early years when you were accused of not feeding them, having Munchhausen, people thought you were crazy, lying, they wanted to put cameras in your house and even went so far as to think you were possessed!"

Honestly, I try not to think about that period of time but she was right.  It was horrible.  We talked about how things have changed...or haven't changed.  In a lot of ways, they haven't.  I am still discounted even with a genetic confirmation.  The raw emotion of this disease is ever fresh and new to me but boring to everyone else so you become isolated and lonely.  She could relate since she has had similar feelings of isolation with her daughter.  It wasn't fun remembering those days, but I did enjoy the connection we made again.

I pray those sweet kids find peace and a loving family to care for them!  I really do.  It was just a small thing but I'm so glad I was inspired to do it.


Thursday, January 15, 2015

29 Gifts Day 4

Today, the gift I had planned never materialized because...well, let's just say the day went completely different than I had planned.

It started with Sam's car breaking down.  That took so much time but I was so grateful that two men from church had stopped to help.   I would have eventually figured it all out but having the help and support was so nice!

That put me late getting ready for my morning meeting so I was feeling rushed. The person I was meeting with was clearly needing a lot of extra support so I stayed until she was in a better place.

I got home, ready to meet my next deadline but my friend called who was going to have a horrible day today and we talked for over an hour.  I was really glad that I could be there for her and things actually turned out better than it could have.  I felt good about that but missed my deadline so I had to call and apologize.

Then, as soon as Sam got home from school, we headed out to the car parts store to get more oil, headlights, and windshield wipers.  When we were through, Sam went home and I had to make one stop for a friend.

Apparently, when Sam drove up to our house, there was a lady laying in the snow on the grass!  He went running to her and could tell that he would need help so he ran in to get Shelbie.  At first, they thought she had just slipped but they both very quickly realized that she was slurring her speech and not tracking with her eyes so they figured she had had a stroke.  It was actually across the street so they got blankets from the nearest house and had them call 911...Strange that neither of them had their phone.

I was headed home when the Ambulance passed me just a block from home.  When it turned down our street, my heart sank.  As I looked down the street, all I could see was Sam kneeling over a body!  I was so sure that it was Shelbie under all those blankets as they waited for the Ambulance.  Life became a blur...I was so scared!  As I ran up to them, I could see Shelbie on the other side, talking to lady, holding her hand.

To my total surprise, I knew the lady.  She didn't live in the neighborhood but I worked with her in my last ward.  Her daughter had just arrived as well because she had called her mom just as this happened so she knew something bad had happened.  I knew her fairly well also.  She seemed in total shock and stood feet from her mother just watching it all unfold.

There was nothing to do but stand back with her daughter, my kids were amazing!  They were totally calm and had done all the right things. As they were getting her in the ambulance, I gathered the lady's belongings that she had been carrying and got them to her daughter as she got inside the ambulance.

It was so scary.  I'm not going to lie.  After we got inside, it all just kind of hit us.  The adrenaline started slowing down and then we were all exhausted and shaking.  I thought it very strange that Sam was the first one to come upon a woman having a stroke.  It's been the one thing that has weighed heavy on him since all these heart and lung problems were discovered.  I can't really put into words how strange it felt but somehow, there was a message in all this.

I thought how perfect today was...The reason I do this project, played out in real events today.  When you help someone else get what they need to be happy, you get what you need in return.  It's the law of nature.  It was a day of helping people and people helping me.  It was perfect.

I was so proud of my kids for how fast they acted and the service they gave.  Shelbie said they had tried to wave down two cars driving past and no one on our street stopped.  I thought that was so odd.

We really need more love in this world.  Are we really all so busy, we can't stop to help?


Stupid and Proud

Is it possible to be both stupid and proud of yourself at the same time?

Yes.  It is.  If you are me...that is entirely possible and actually happened today.

Sam called me about 5 minutes after he left for school to report that his car quit.  By the time I got to him, 5 minutes away, he was able to start it back up and drive it in to the gas station parking lot.

I arrived, popped the hood and stared at the engine.  I'm girl...what did you expect me to do?

I did actually pray to know what to do because Heaven knows...I can not afford anymore car problems.

The thought came to me to check the oil...So, I found the dipstick, checked the oil and it was bone dry!  Then I thought to check the coolant and surprised myself that I even knew where the coolant was.  It too was bone dry.

I headed in to the gas station and bought some coolant and oil.  I really had no clue what kind of oil to buy but I was thinking that since all I ever hear about is Penzoil 10W30, it must be pretty common and this was a pretty common, albeit old car, so I bought one quart.  I also bought a gallon of coolant.

Just as I was headed back to the car, my friend's husband was on the scene.  He was very helpful and it was nice to have some back up mostly to validate that what I was doing wouldn't completely kill the car but I'll admit, I felt like a fool when he asked me how long it had been since the oil had been changed.  I seriously thought it had been since before Spencer left on his mission because I haven't taken it anywhere!

I figure I'm doing pretty good to work full time, nurse full time, be a mom full time...I kind of depend on my kids telling me when their cars aren't working and then I deal with it.  I's a poor technique.

I forgot that we replaced the radiator in November and had the oil changed at that time.  Thanks to Sam for being bright enough to look on the windshield sticker.  I'm such a dork!  Anyways, my friend's husband took care of putting the oil in.  While he was doing that, another friend's husband showed up because he saw us all out there.  He asked if there was gas in the car.  What a great question...why didn't I think of that?

Cause I'm a dork! And...because I have come expect big problems...not simple problems.

Sure gas!  I could blame Sam for not keeping an eye on his gas gauge but in his defense, the gas gauge isn't accurate.  The only way I really knew he was completely out was because it took all 14 gallons of gas and then a little more.

  Sam had gone back in the store to get a paper cup we could use to funnel the coolant in so while he did that, I drove it over to the pump.  I could not even turn the steering wheel!!!  Seriously!  So...I looked like a huge dork, trying to steer this car.  I probably looked like I have never driven in my life. I don't even know how Sam got around town with a steering wheel like that.

I asked the guys about that so they checked the power steering fluid and the transmission fluid...bone dry!!!  What the heck?

So, off I go, back in to make another purchase of power steering fluid.

The guys filled that up and what do you know?  Sam could steer!!

They were so kind and patient and helpful...It was truly a gift and they were both late for work!  I felt so bad.  I'm sure they thought I was a pretty careless person to not have a clue what was up with our cars but if they were thinking that, they sure didn't make me feel like an idiot.  I did that all on my own.

Sometimes, it takes these little hiccups in life to point out where you are dropping the ball so you can course correct.  So, after school, Sam and I will be taking a field trip to the auto parts store for 5 more quarts of oil and some headlights because strangely enough...those burnt out today on my car!

Thankfully, changing headlights is my area of expertise but now so is oil, coolant and power steering fluid!

Plenty of lessons learned today.  I learned that I will pay more attention to maintenance on our cars but at the same time, I'm glad I got as far as I did before help arrived.  I was blessed for sure because as you know...I'm just not that smart!


Wednesday, January 14, 2015

One Willing

I'll do two posts tonight so I don't miss the beat of my 29 gifts project but back to the heart drama.

FINALLY!!!  Finally got somewhere on the cardiology referral.  I got a call from a group in the city who have several Cardiologists.   I hadn't specifically chosen a doctor, I asked our family doctor last week to choose one that he thought would be a good fit for us, knowing our history and what not.

Well, apparently it didn't really end up working that way.  When the scheduler called, she said, "There is one doctor who is willing to take your case."  Then she said his name.  I don't know him.  I've never even heard his name which is fine but I was kind of stuttering over the way she said that...One doctor willing...


"What do you mean exactly that only one doctor was willing?"
"Well, the group met about your case and basically, only one doctor said they would be willing to take on your son.  The doctors here like to deal with adults and your son is not an adult and has a different kind of situation."
"He is practically 17 and in one year, he will officially be considered an adult.  What were the doctors told about our case?"
"I'm not sure, it's just based on the echo studies we received."
"Actually, he does have an Orphan disease.  I want the doctor to know that before we come so we don't overwhelm him.  I'd be happy send him some brief background on it if that would be helpful.  There are less than 200 people in the world with this disease so I don't expect him to know about it."

The nurse was really nice and inquired further about Sam's condition.  I gave her the Reader's Digest version and she told me that her brother just had a bone marrow transplant in September down in Texas!  So, we just kept talking about stem cells and bone  marrow failure.  It was interesting and she was very nice.  She assured me that the doctor who is willing is really good and will be a good fit for us, he isn't afraid to learn new things.

I hope so.  It doesn't make me feel very good knowing that out of 8 or 10 doctors, only one person wanted to deal with us!  Sad, but that continues to be our reality.


29 Gifts Day 3

I knew of an acquaintance who will be embarking on a task tomorrow that is quite daunting and scary.  They aren't too excited and in fact, pretty upset.

So, the kids and I put together a little Candy Gram of encouragement so that she can at least get through the day.  We dropped it off and she was really surprised!  I hope it helped.  It was fun to pick just the right things out for her.  She got a bit of a laugh too which is good.

Gourmet Root Beer and plenty of chocolate...that ought to do it!


Tuesday, January 13, 2015

29 Gifts Day 2

I was really excited about today's gift.  Donuts for the Dump...that's what I'm calling it.

Lately, I have been dealing with some pretty insensitive people.  On top of already stressful situations, its annoying to have to face secretaries, nurses, doctors,bank tellers, school teachers, Walmart checkers, who are just grumpy and cranky.  Some of the people I run into have pretty decent jobs, make a good living and work for great companies, I don't understand what makes them grumpy.

I have been frequenting the dump a lot lately because I have been totally overhauling my house and while I don't have a truck, I stuff my car to the gills, things dragging along behind me and I head to the transfer station.

The transfer station or the dump is a horrible, disgusting place! The floor is slimy and you have to pull right in among all the trash and unload, so you slip and slide around, especially when you are wearing your little patent flats from the Gap.

Birds sit perched on the trash, worn out boxes and up in the ceiling rafters.  They buzz down to see if what you are dumping is worth their while.  Mixed in with the birds are cats.  I hate cats.  On top of the critters mulling around, you can hardly breathe.  In fact, when I go to the dump, I pretty much plan on not breathing from the time I hit the overhead doors until I am a safe distant from the building, like a couple of miles down the road.

As I was unloading my stuff on Monday afternoon, I thought about how it would feel to come to work here every single day.  I would find plenty to complain about.

I drove back around through the scales and headed up to pay.  When I got to the window, I was greeted by the happiest two women I have ever known.  They were so cheerful and asked how my day was going.  I was expecting some grumpy, old tattered soul, just punching a time clock with maybe a few whiskers growing out of their chiny, chin, chin but no...they were nice, clean, happy women!

I drove all the way home, just amazed that they could be so happy in such a forlorn and stinky place.  I decided that they needed a gift.

This morning, I picked up a dozen donuts and drove out to the dump to tell those sweet ladies how much I appreciated their cheerfulness and I could tell they weren't just faking a smile but that they really wanted to be helpful and do a good job.  I told them that anymore, all you run into is grumpy people at work and of all the jobs, they certainly could have a free ticket to complain all they wanted but they seemed so happy in their work.

They were so appreciative.  One lady said, "No one ever tells us we are doing a good job, let alone that we are happy but we are happy! It's a great place to work and we are so grateful to have a job!"

I seriously wanted to cry...I was really touched.

I don't think you can find too many people anymore with job satisfaction like that.  In fact, today, I was around a group of secretaries complaining that the free lunch they were given was from Subway.  "Gross, I guess I won't be eating today!"  Free lunch, and they complained? Such a stark contrast to my experience at the dump.

It was another reminder to me that some people don't ask for much.  They just quietly go about their job, grateful and happy to have a job and all they really require is just a little love and acceptance yet, it seems like the hardest thing in the world to give.


Monday, January 12, 2015

29 Gifts Day 1

Today is the start of my second annual 29 Gifts project!  For the first time in weeks, I feel a different kind of energy.  I also committed my kids to participating with me more this year than they did last year.

I was so excited to stumble upon a non profit organization called Color A Smile.  They are an organization who has sent over 1 million pictures to children, senior citizens, military, anyone in need of receiving a smile in the mail!  When I read about their mission, it was right up my alley!  I love the whole concept of this and how easy to help!

They provide the sheets to color.  All you do is download, print, color, then pop them in the mail and if possible, include a little donation!

Tonight, we each colored two pictures.  It seems like such a childish thing to do but it was really so relaxing to just do something simple and help someone at the same time.

Just for fun, instead of putting our real names, we used artist's names like Michael A.  and Pablo P.  We had such a great time, sitting by the fire, coloring and pretending we were little again.  That was a bigger stretch for me than the kids!

We are off to a great start!!!

I am so excited about tomorrow's gift, I can hardly wait to give it!  Stay will never guess what I do!

Sunday, January 11, 2015


With 2014 about 600 miles away in the rear view mirror of life, seriously, it feels like forever ago...I've dared to reflect upon what I loved about that year.

Every January 1, I usually blog about how incredibly glad I am to be done with the past wretched year and my hopes are high and bright and shiny for a new year, a new me, a new set of challenges and then 5 days later, I can see it's going to look much like the year before, and 365 days later, I'm so glad it's over.

This year is no different really.  Glad to have 2014 done.  Wish 2015 was starting out better.

However, there was something about 2014 that I loved!

The beginning of January, I started an experiment called 29 Gifts.  It was life changing for me.  It came along at a time when I was waiting to hear about the gene that the researchers had found in my kids.  I really needed the good distraction in my life.

So, I am going to embark on this again!  29 gifts.  Starts tomorrow.

I have been going over the 29 things I did last year and I loved them all.  It's so hard to say which one was my absolute favorite gift.  I am hoping to change it up this year, but honestly, some of the things I did last year touched me so much, I might just have to repeat it.

It's so easy to say..."Maybe I'll do it next month, when things have settled down." or "I have enough on my plate, as if I need one more thing."  The truth is, life is never going to settle down.  There will never be enough time.  Something will always be more pressing, but not necessarily more important.

This year, more than ever, I have felt the disconnection of humans and it bothers me to no end. I have experienced first hand, what happens when we get too busy to care.  We have become a stingy society, reserving love, caring and time for when it's convenient.

When I look at my own calendar of time sucking events, there is barely enough room to breathe, which is why it's even more important that I do this...NOW.  So, come along.  Like last year.  I will post a weekly recap on the blog.  I challenge you do start your own 29 gifts project. Here is last year's kick off post...

Saturday, January 10, 2015

Emotionally Confused

I had a friend tag me in this video she posted on Facebook.  She posted it for all us rare disease moms to have a little laugh.

But the truth is, this pretty much sums up how I've been feeling for the past month; Emotionally confused! Though it may not show on the outside, I am totally doing this on the inside!!!   Of course, I didn't have to have any needles but good grief, it's been quite a ride!  

Laughing and crying at the same time...if you've never experienced are truly missing out on some awesome crazy!

Have a good weekend!  I'll be emotionally confused if you need me!

Friday, January 9, 2015

The strong man

Yesterday, I allowed Sam to go to his parkour class.  Staying active keeps his mind calm.  It doesn't keep my mind calm to let him go but it's not really about me!   He loves pushing his body to crazy limits; kind of like his older brother!

I'm not going to lie, I couldn't concentrate on anything last night while he was gone.  I worry so much about his heart building up too much pressure in that right chamber.  But...if he crashes at the gym, at least he's doing something that makes him happy and feeds his passion.  So, I went to the other gym and tore up the Crossramp and walk 2 miles of stairs!  That seemed to help displace a little of my own anxiety!

Last night, he took lots of pictures and some awesome videos.   When Sam and I go to the gym together at night, I watch him do these pull ups from the stair master across the gym.  It's amazing to watch him in real life.  It's also fun to see all those beefy, bulky men stare at him in awe.  Most of them can't even come close to doing what my lean, strong boy can do.

This comes from hours of training and work

This is how Sam does his push ups!  No kidding...he does this almost every night in his bedroom! 

Just for fun! 
It's interesting when you think that Sam does this move with an abnormally small ACL in his knee.  It's barely a few threads of ligaments keeping that knee stable.  

It's one thing to do a pull up but an entirely different thing to do one backwards and side to side.  Maybe it's just because I'm his mom but this really amazes me!

When I watch Sam do these things, I can't help but remember how blessed he really is, we really are.  He doesn't look like a kid whose bone marrow is barely hanging in there, who has a poor immune system, half missing ligaments, lungs that don't exchange oxygen and blood properly and a heart with not just one problem but many!  No wonder doctor's don't think they need to fix anything...He is the picture of health on the outside.  I just wish he looked as good on the inside!

He's my sweet 16 year old and I feel really fortunate to be his mom!


Thursday, January 8, 2015

I've never done this before!

This afternoon, I did something I have never dared do before.

 I stood up to a doctor.  I can rant and ramble on a blog or to a friend but I never say it to a doctor's face!

I think I mentioned that our family doc had implied that I had just set up a little black cloud over our house and we just mope around depressed.

Well, today, I had to go back down to see him so I could get a cardiology referral.  I decided to make the appointment under Sam's name but not take Sam.  It's not like he needed to be physically checked and he's getting pretty worn out with doctor appointments so I just went alone.

The nurse came out to the waiting room and called his name.  I explained that I didn't actually bring Sam with me and why.  She was a new nurse and got all huffy that this isn't how things work!  I was really calm and said, "I think the doctor will understand."

"So, I have no one to weigh and get vitals on?"
To try to break the tension, I said, "Well, you can weigh me if you want." She didn't find that to be amusing.

She put me in a room and then a few minutes later came in and said, "The doctor said he knows why you're here and he will call in a cardiology referral if you tell him who you want to work with."

"Well, I appreciate that but I really just wanted to talk to him for a minute."

Then came the eye rolling, the attitude..."He just said he would do it!"

"I made an appointment and drove all the way down here, I just really need to talk to him."

She left, practically slamming the door behind her. Sheesh!

When our doctor came in, I apologized for making her angry.  He told me not to worry about it.

I filled him in on how the pulmonologist lied and treated me and now I was just confused about what cardiologist to go to because I don't ever want to be treated like that again.  I'm not a cranky, difficult person. I just need to be heard and validated.  I also told him that it wasn't fair for him to assume that I am dwelling on the fact that my kids have a fatal disease.

I explained to him that we laugh, every day!!  Every single day, I take it upon myself, regardless of how I am feeling to make sure that the kids end whatever kind of day it was, on a positive note.  I let Sam go to his gym class even though I would have every right to keep him home.

"Every day is hard for me.  Every day, I have to let my kids do things that scare me to death but I keep my mouth shut and I cheer them on, encourage them and even facilitate their goals and dreams.  No one sees just how hard it is because I keep all on the inside.  No one sees how scary the past two months have been for me.  Every day, I see people in bad moods, frustrated moods, upset moods, sad moods and it's okay for them to feel those things.  In fact, people rally around them.  My question to you, is, when is it okay for me to have a day when I just can't be strong for one more minute?  When do I get a day like that and not have people jump all over me for being 'depressed', 'discouraged', 'whining', 'complaining', 'making mountains out of molehills' and 'not encouraging my kids to live life to the fullest.'  When? Because you did to me, the other day, what everyone else has done to me."

I couldn't believe I actually said all that but I'm glad I did.  He admitted that he doesn't know what life is like at our home and sometimes, he just doesn't know what else to say because he's scared too.   He said when he has to see what we deal with it breaks his heart and he goes home and hugs his own kids.

It was probably the best doctor's appointment I've ever had.  We communicated and we came to an understanding of each other.  Kudos to him for staying engaged and talking it out. I really appreciated his honesty.

It's been quite a week.  I've had to do way too much advocating and that is not something I love to do.  It completely wears me out.

Ahhhhh...well, cardiology referrals are in the works.  I was glad to our doctor for helping me find a good one.  There are some decisions I just can't make anymore so when he said he would take that over, I was so glad!!

It may still be a month or so before we can get in but at least the plan is underway!  That's something.


Wednesday, January 7, 2015

Better than fiction

Are you getting sick of the drama from over here?

I am.  I am so sick of the chaos and drama.  Sick.  It has completely consumed every day, every thought, every thing.

First thing Monday, I called our Pulmonologist to get him to weigh in on Sam's bubble echo study.  Of course, I already had the report but I needed him to tell me so we could get the next test scheduled.

I was floored when the nurse called to tell me that Sam's test was "100% Normal."

"Really?" I asked. "100% Normal?  I have a copy of the report right in front of me and it is far from 100% normal.  His heart is riddled with abnormalities.  How is that normal?"

"You have a copy of the report?"

"Yes.  I went and picked it up from the lab last week."

"Oh.  Well, I'm just relaying what the doctor told me."

"Well, that just doesn't make any sense."

She got pretty angry after that and asked, "What is it you want from us?"

Are you kidding me?  What kind of professional addresses a patient like that?

"What I want is to talk to the doctor himself."  I said in an actually kind tone.

Of course, I got the rigmarole that he's so busy, blah, blah, blah...

As soon as I hung up the phone, I called to our doctor in Seattle.  In ten minutes, I spoke to the doctor's head nurse and had a meeting set up between our Immunologist and Hematologist for this morning, Wednesday.  These are two of the most well know doctors in their field, highly respected and I get through to them in 10 min.

Our Seattle doc actually called me Tuesday night but I was at work and didn't hear it ring.

This morning, the pulmonologist called me.  Again, he said the test was normal.  Again, I questioned his definition of normal.  I will spare you the dialogue but basically he admitted that Sam's heart is not going in a good direction and yes, there are some problems but he felt that I worry too much about my kids and he didn't think I needed to worry about this.  Then he said, "Do you really want to put your son through this?"

Here's a news flash!!!  How about if you just let me decide what I will worry about and what I won't!  And let me worry about what Sam is going to go through!

Anger doesn't even come close to describing my feelings.  I asked about the increased pressure in his heart and he said, that yes, it was kind of serious and if it goes up just one more point then we have some real problems to deal with.

Nice, how we go from, 'this kid needs surgery asap' to 'everything is 100% normal' to 'one more point and we have some real problems'  Unbelievable!  I couldn't make this up if I tried!

He still refuses to give me a cardiac referral but did say that we need to follow him closely and repeat the tests in 6-12 months.

Later today, I was able to connect with Seattle and she said that this is not surprising really and the heart and lungs can be real serious issues for kids with DC.  She said that we really do need to do the additional testing to better define the abnormalities.  She even suggested that we come to Seattle next week and she will get us into a cardiologist and pulmonologist there.

I am not keen on winter driving and spending all that money, so we decided that I will try to get a referral from our family doctor and have a consultation with a cardiologist.  If he is not receptive then we will head out to Seattle as soon as possible.

While I'm feeling slightly better that someone finally listened to my concerns and we have a plan in place to follow up, I am saddened that our Doctor in Seattle said that things might start getting complicated.

Dyskeratosis Congenita is a disease of the telomeres.  The telomeres protect the chromosomes from getting damaged.  As the telomeres get shorter and shorter because of the disease, then organs begin to fail, cancer starts showing up and it can be very complex and complicated.

I really pray that we are just in a bumpy spot and this is not a true set back of disease.  I hope we have a few more good years before things really start deteriorating but, as always, we will continually try to keep our will aligned with God's.

Looking back to a month ago, I can't believe how quickly things went south.

The bottom line is, there may not be a solution to these heart problems.  They are pretty extensive, mild at this point so that's good.'s sad and disheartening.


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