Thursday, January 30, 2014

Keep Your Fork


For 29 Gifts, Day 28...I want to give a gift to everyone who has read my blog!  I have no way of knowing all of you...there are some people half way around the world; so to write a personal thank you is not feasible.

Instead...

I wanted to make something special for you!  I have had two quotes that I have loved for nearly forever!  I have even stenciled them on my wall. Today, I made them into free printables!  They are both 11x14 in size. Follow the links and print them out!

 Download this one HERE

I love this quote! It is a great reminder that trying is enough!  Somedays, I feel like I am on a roller coaster.  One day, I handle the setbacks like a champ, the next...the rugs been pulled out from under me and I don't know which way is up! I hate those moments when I am weak and tired but this helps me be gentle and forgiving of myself.

Download this one HERE


I love the story that goes along with this quote!  A young lady was dying of a terminal disease.  She met with her Pastor to discuss her last wishes and plans for the funeral.  She requested that she be buried with a fork in her hand.  The Pastor asked why.

The woman explained, "In all my years of attending church socials and potluck dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitable say to everyone, 'Keep your fork.'  It was my favorite time of the dinner, because I knew something better was coming, like velvety chocolate cake or deep dish apple pie-something wonderful.  So, I want people to see me there in that casket with a fork in my hand and wonder, "What's with the fork?"  Then, I want you to tell them, "Keep your fork, because the best is yet to come."

Even though this life throws all sorts of curve balls at us...I know that the best is yet to come!

I hope you enjoy these printables!  Thank you for reading and supporting our family.


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Wednesday, January 29, 2014

Special

Well, I made it through half of this winter without falling on the ice...

Until today!  I had my first fall.  I also had my second fall.  Yes, I fell twice... on the ice... in the very same spot and both times with my cleaning tote in hand!  I wasn't quick enough to take a selfie of the disaster, but this picture is very similar to what I looked liked!  Just picture bottles of cleaning supplies scattered about!


 I couldn't see the solid sheet of thick ice lurking under the innocent dressing of fresh snow we have received today! Because I was on a sheet of ice, it was pretty comical trying to stand up!  I felt like all of a sudden, my limbs were 9' long...each! Gosh!

Of course, when you fall, you are simultaneously straining your neck to make sure no one saw you and then regardless of the broken limbs dangling from your body and the 3 or 4 snapped vertebrae, you are up like an all star in a boxing ring!  It all happens in under 3 seconds which makes you special.  It's so cool how you just bounce back up despite the searing pain in your butt!

You are super special, however, if you do it twice within 3 hours of each episode, in the same place!  It was like an instant replay! Apparently, I have some short term memory loss or I would have remembered the patch of ice!

It's all because today, despite the heavy falling snow when I woke up and left for work, I wanted to wear my cute shoes, not my practical boots. Lesson learned.
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Tuesday, January 28, 2014

In every change

I have been trying desperately to avoid our Oncologist.  In fact, I still haven't made the appointment to go in and discuss Samuel's bone marrow biopsy.  I am taking the 'No news is good news' approach to this one.

I have not been very happy getting information about this new disease piece by piece, like breaking news!  I just want it all served up on a big, white platter so I can see it altogether; so I can see how one thing runs into the other, touches each border of the next thing. The only way I could figure in my mind to do this, was to avoid the doctor.

Yesterday, while dropping off the rice bags for the pediatric oncology patients, he saw me walk past the corridor he was in.  I tried to hurry to the door but he called for me.

"Ughhh, I was trying to avoid you!" I said
"Why? What's the big deal?" He asked.
"I just don't want to hear anymore about this crazy situation we are in. It just brings up too much anxiety for me.  I would rather find it all out at once."
"It's so exciting!  Don't be nervous, just be excited!  You are making history!" He replied.

I don't share those same sentiments of excitement. He has received the test kits to start the clinical studies but now we are waiting on approval from insurance.

He reassured me that when I find out the name, it will encompass every strange thing we have dealt with along the way.  He also told me that there is one young man in his twenties who has been described in literature in the past.  He has now been confirmed to have the same mutation as the boys.  So, in fact as the record shows this week, there are three confirmed people with this disease...in the WORLD!  I know that number will grow but for now...it's a bit staggering.

So, Monday night, I laid in bed and found myself praying for a young man I have never met! I prayed that he is healthy.  I wondered about his mother.  I prayed for her too.  I wonder if she is feeling happy and excited or a bit sick and overwhelmed. I wonder if someday, I will meet him.  I prayed that when that day comes, he will be healthy.  He will look healthy and he will be happy!  I just need that beacon of hope.  I just need that symbol to reassure me that my kids possibly have a future beyond their twenties.

Selfish.  Maybe.
Strange...Yes.
Does it make sense to feel this way?  Probably not, depends where you stand...your perspective.

Today, as I made my 1.5 hour commute to work, the song Be Still My Soul played.  In the chaos, I can't deny that God will provide order. He will lead the future as he has the past and in every change...He faithful will remain. He has and he will.  Too bad I have to be weak and puny sometimes.

We have a few thorny ways to get through and though most days, lately, have been quite manageable, I have been able to keep the emotion of all this at a good arm's length away, every so often, I am surprised at the force at which this hits me, almost always unexpectedly.  I hate it.  I have higher expectations of strength and courage for myself but such is life.


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Sunday, January 26, 2014

29 Gifts week 3 review

I can't believe that I am in my final week of 29 Gifts.  I am really anxious to write my final post on all my deep thoughts about this project.  For now...Here is this week in review!

Monday was day 17!  An amazing day!  To read more about this gift, you can go here  I just wanted to take some simple little daisies to the assisted living home.  When I realized I couldn't even afford little daisies at over $3 a stem, I left to come up with a different plan.  Before I got out the door, the lady asked what I was doing.  When I told her, she gave me 2 dozen roses!! For free!  I was so blessed.  The people at the assisted living home were so happy!  It was awesome.
Day 18 was just plain fun!  I had these tickets and wrote on them "Today is your lucky day".  I taped a dollar to the back and then the kids and I took them and taped them onto toys at the dollar store!!  When we got there, there was a mom with her three kids, intent on choosing a toy.  We handed them each a lucky ticket!  There eyes got so big but not as big as their mom's!  They were such a sweet and grateful family.  I realized that we don't really get to see people spontaneously happy do we?  We see people happy but not 'I won the lottery' kind of happy!  It's hard to believe that one dollar can put that kind of smile on a person's face but its true.  It doesn't take much at all!
 Day 19- This was an important one for me.  There is a mother and her daughter that have come upon some really crummy luck!  They are heroes as far as I'm concerned.  They live on the other side of the country so there isn't much I can really do to help them so I sent them a box of sunshine and caring!   Ya know, I have never met these two angels but I feel like I have always known about them!  They deserve a break!  I wish I could have given them a bigger break but with this went a lot of love and prayers!
 Day 20- This was a big on the corny side but I love surprises so corny or not...surprises are just awesome!  It's like finding a penny in the gutter when you were a little kid!  I made these little cards that said, "You're EXTRA special"  I taped a small package of Extra gum to it and then hid them among the books at the library!  I enlisted my kids in this one as well and we had a great time!  I love to see my kids excited and laughing! Good times!
 Day 21- This gift didn't really go as planned and I left feeling a little disappointed but then I realized that maybe it wasn't so bad.  I wanted to go to the animal shelter and play with the dogs and feed them treats.  It didn't occur to me that there might not be any dogs there.  There weren't, just cats.  I'm not really a cat lover, like at all but I couldn't resist their sad little eyes behind these bars!  The tiny room was full of girls playing with the cats.  Those girls were in Heaven.  One little girl was disabled with some obvious mental challenges.  I was more intrigued with the love she was giving those cats and what the cats gave back to her.  I realized that that was exactly what this project is about...giving and receiving, filling voids, spreading love...Abundance! So, it wasn't so bad!
 Day 22- I have always wanted to do this...surprise someone with pizza delivery!  I asked the server at Pizza Hut for a little help on this one.  I knew of a family, kind of new in town, they don't know me much, if at all.  I don't have any idea what made me think of them but I did.  I found their phone number and address.  I had the server call them to say they were delivering free dinner at 5pm!!  It was awesome!  They kept asking her who was buying them dinner and she kept saying, "I am not authorized to say."  I loved it!  I love that they will never know who loves them!  I wish I could have seen how excited their kids were to get a surprise pizza party!!!  Yay!!!  The server was so excited too and that in itself was awesome!
 Day 23- I have tried to include all different groups of people on this journey.  I had to do something for a teenager.  One of my favorite young women from church is turning 13 years old!  I really admire her.  I wasn't nearly as sharp when I was 13!  She is already so cool!   I wanted to wish her a happy birthday and give her some birthday advice for surviving the teen years...albeit...unsolicited!  ha ha...I tried to make it a little funny.  One of my favorite phases of parenting has been the teen years!  I have loved having teenagers, seriously.  It is such an incredible time in life to see them grow in character and decide who they are going to be.  It's exciting, scary and wonderful all at the same time!

There is one gift I had planned to do but it never materialized!  I really, really wanted to write a story for an elderly person.  I wanted to have them describe to me the best day of their life, with as many details as I could get, and then make that day come to life in a story for them!  I tried every single day to get a story going.  I have spent a lot of time this week at the assisted living center and I could not find one lucid person who could remember anything in their past.  I did have some funny experiences and learned a little bit about what it feels like to live in a nursing home.  I will have to keep trying for this one to work.

One good thing about my efforts is that I spent time with the lady I wrote about on Day 17, sweet Dona.  She is my new best friend.  She thinks I live there!  I have seen her so much and when she sees me, she holds my hand the whole time and we walk the halls.  She tells me how her purpose in life now is just to make people happy!

She is doing a great job because I always leave there happy!  She asks me when she will see me again, then stands at the door and waves to me as I drive away.  There is something special about Dona.  She is a gift to me.  I spend a lot of time alone these days, especially on the weekends but hanging out with Dona fills a void!! I'm glad that I met her!

Well, I have some awesome gifts planned for this coming week!  I am so excited about each one of them so stay tuned!
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Friday, January 24, 2014

Before I Die...

I was at the library this week and they have this large bulletin board with a heading that says

Before I die I want to....

Beside the board, they have pencils and sticky notes to write what you want to do before you die.  Have you ever really thought about what you want to be, accomplish, do...before you die?  We make bucket lists but I wonder how serious they really are?  Some people wrote a volume of their life on one tiny little sticky note, in two words...

I tried to take pictures of the deepest thoughts but the lighting was poor and my phone camera not adequate but I thought this one was interesting... Smile More.


 Another one said, "Stop being depressed", "Be loved"  One creative person said, "Try Hot Pockets".  Yep, that's about what I want to do too but I am too scared of those things...I'm not exactly sure what's in it.  That would be epic if I ate one of those processed wonders, it would be equivalent to being a contestant on Fear Factor!  Not going to happen for me!  Anyways...back to the point.

I find it so interesting because they all seem like simple things.  Not like "camping on top of Machu Picchu."

I once started a coin jar for the trip to Bora Bora I would like to take before I die and then I gave up and went to the gas station for a Pepsi with the change because I knew I would never in a million years, get to Bora Bora when buying a gallon of milk, some days, feels like a destination I had to save for!  Those kinds of things are fun to dream about (well, not buying milk) but being loved?  Being happy?  Smiling more?

Aren't those just basic needs we all have?  How is it that life can be so threatening that those simple things become something that your dreams are made up of?

I stood there in awe.  The kids had fun coming up with their own little contribution to the board but I was a bit dumbfounded.  I wish I knew who wrote those things so I could give them a smile, love them and do something to make them happy!  I never knew a sticky note could bear the weight of such heavy hearts!  Then to think, how much they really want it, that in anonymity, they wrote it on a library wall for a stranger to happen upon.

I haven't stopped thinking about it.  How would you finish that sentence... Before I die I want to...



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Thursday, January 23, 2014

'F'

Yesterday, I got this letter in the mail.

It was from Sam's English Teacher.  There was no message attached, they never do write anything, like they just don't care or they are hoping it will be a big surprise or something, who knows; they just send this progress report and there at the top, they hope you see the letter grade of 'F'.  I guess if you miss it there, you're sure to see a string of them down the right hand side of the page. I just think the teacher should include a little note or something.  Say something a little friendly and encouraging.

If I were a teacher...I would say something like..."Hey, just thought I would let you know that your son doesn't have an 'A' but he's a really great kid!  I really like how he doesn't turn anything in and he is super special because he didn't even get the 5 points for Spirit Participation when we started Julius Caesar!  I guess he is consumed with other interests."  Seriously...We are in 10th grade...what the crap are Spirit Points?  I'm going to send Sam to English class with pom poms tomorrow and few Shakespeare cheers in his back pocket!

I was mildly bugged by this.  Only mildly, mostly because I have helped Sam with much of his English homework and I know he has done his best, but also because I just really don't have the energy to care. I am the responsible adult around here, at least most of the time so I Knew I had to bring it to his attention and make sure he was going to devise a plan to rescue this grade.

I thought all afternoon about how to approach this with him.  I didn't want to get him on the defensive because then you get nowhere with kids, at least my kids.  I needed to sound neutral but ally myself with him at the same time.

When I picked him up from school, I said, "Well, I hope you had a great day at school today!!"

When my kids are asking me for a huge favor or before they admit screwing something up...they always say, "Mom, I sure like what you've done with your hair..." I have learned that something big is coming so, my statement to him was priceless...He knew right away, something not so cool was about to happen!!! LOL!

"No, I am not going to help you clean!  Do we have to drive to Pocatello?" He asked with a lovely whine!
"Nope.  You are gonna be wishing we were taking a road trip though." I said with a laugh.
"What?!!! What is your problem, just tell me."  He is starting to smolder slightly.
Shelbie pipes up..."Oh, this is getting good!"

"Well, I received a letter today from a certain English teacher alerting me to the fact that you have an 'F' in English.  Do you want to explain how that might have happened?"
"Shakespeare happened, that's what!!! English is stupid. Besides, you told me that you weren't concerned if I was an 'A' student or an honor student, you just said I had to pass and try my hardest!!!"
"Yup, that is what I said but clearly, you haven't been trying your hardest and you are not passing."
"YES I AM!!!"  So, now he is about to fly off the proverbial handle and we just barely got out of the parking lot at school!
"Sam...an "F" is not passing."
"Yes it is! Just barely but it is."

By now...Shelbie and I are trying so hard not to laugh!  I think I may have had tears trying to run down my face from keeping the laughter inside. I decide to just have a little fun with the boy.

"It is?  Okay, then what letter grade comes after F that would mean you are failing?  G for Good Luck, try again next trimester?"  Shelbie and I start laughing...I'm so immature sometimes...sheesh...I should really grow up and be a mom!  I nearly high fived Shelbie cause it was so funny but quickly changed my mind!

"F means....F....F...It means....F means FIXED!  NOT FAILING!!" He screams!
"Ya, you better FIX it my friend!" Still laughing....

Bahhahahahahah....Fixed huh!  Wow, I can't wait for him to explain this one to his teacher!

Oh. My. Gosh....I am so glad I don't have 5 more kids after him!  I am so done with school and raising kids in general!  Yikes.

He did calm down and explained to me that he had turned a bunch of stuff in that she neglected to grade yet so he should be fine with a solid D.  Hooray for Sam.

SERIOUSLY though...This tri, they had to read Julius Caesar.  I don't think its fair in any way to require a student who is in the 5% for processing and who has Dyscalculia and Dyslexia to read or listen to Shakespeare.  It doesn't take an Einstein to see that train wreck coming!!  They read it in class but by the time Sam's brain figures out all the 'Where for art thous' he's already missed an entire page of the book!  Then to read all that on a test is an impossible feat with Dyslexia alone!  He failed every single test and quiz on Julius Caesar.

So, I really do feel sorry for him and I did see him working hard on his essays and other research papers.

He has been so tired and so preoccupied with all the health stuff, I know that school is the last thing he can focus on.  His knees are having so many problems and dislocating while he's at the gym so that has him worried too.

Earlier this week, Shelbie and her friends were getting together to make inspiration boards.  Sam was invited to join in.  This was his board....

I came home from work and looked at everyone's board sitting on the table.  When I looked at Sam's my heart broke...Look at what he wrote on the bottom...The creative adult is the child who survived...

That made me realize that right now, Sam is just barely hanging in there!  In his mind, he is just trying to survive, so I can see how Shakespeare and English and a research paper on which diet is the best is really the least of his worries.

His grades suck but he really is doing the best he can.  IEP meetings are coming up.  Yippee... can't wait!

In the meantime...That 'F' is being Fixed.  ;)

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Tuesday, January 21, 2014

Kids and Cell Phones

What is it with kids and cell phones or people in general and cell phones?

I don't understand why someone would buy a cell phone, hand out the number to people as the best  number to contact them on and then never answer their cell phone?  They don't answer it but they never respond to text messages or emails either.  You may as well not have a cell phone if you are going to be allergic to it.

Then, there's my kids.  They are so annoying!  Truly, they are.

They never put their phones down when they are at home.  They get a text every 20 seconds it seems.  The house is full of random sounds, a new one every day it seems.  Now granted, they rarely watch tv anymore or play games, they are just busy answering text messages and watching Facebook like they are going to miss something important.

I asked them once...What are you afraid of missing if you don't check Facebook every 5 minutes?  They can never answer that.  So, whatever.  I have given up trying to get them to put the phone down. Well, I HAD given up...but now, I'm thinking a little revenge is in order....(maniacal laughter....)

You see, this past weekend, Shelbie was gone on a road trip with her friends and Sam was gone to his Dad's and doing all sorts of things.  The last thing Shelbie said when she left was...I'll check in with you and let you know what we are doing?  That was pretty much the last time I heard from her.  I did get a text that said, "Here."  That was awesome.

So, being the responsible parent that I am, and by that I mean the helicopter mom that I am, whirling around their heads, I texted her, "Hey, what's up?"  I wanted to sound both cool and casual.  Now, since I see them at home with their phones growing into the skin of their hands, I thought it would be 30 seconds tops, before she responded.

Nope.....crickets....nothing....nada.... Minutes go by...I am pacing the floor wondering if she is okay.  She's shopping probably.  Hours go by...I am trying not to get really mad...I text her again, "Hey, Hey?"  Nothing.  She's eating at Chilis probably.  More hours go by...I haven't accomplished a darn thing because I'm still pacing, still texting 'hey, hey', still trying not to get mad but now I am tearing through cupboards trying to find some Valium or some cheap imitation to just knock me out so I don't die from worry.  Some moms have actually died from worry you know?  Really...you should believe me!

Finally, like 15 hours later..I get a text..."At the mall"  What the freak???  That's it?!! AT THE MALL...no..."Hey mom, I really, really miss you!!! You are the best for letting me take a road trip with my friends!  There is no other mom on earth as cool as you!!! I love you!!!"  No, nothing that sentimental...just at the mall!  

Another 30 hours pass and I have run out of things to numb my mind so I call her.  It goes straight to voicemail.  "Hey, hey...this is your mom...just wondering where you are, what you've got planned.  If you could get back to me that would be cool."

Eventually, she calls back and there is always a great and creative excuse!  I think all children come pre-wired now days with this reel to reel re-run of lame excuses for why they can answer everyone else's text messages but mom's.  Here are my kids' favorite excuses...

"My phone died."  for Christmas, I gave them both portable chargers for those times when the phone dies and they can't find an outlet!
"I must have had it turned to silent."
"I left it in the car"...they also use, on my bed, in the bathroom, at my friend's house, under the rug, in the garbage as other reasons why they didn't hear it ring. They are so creative that way.
"I didn't have any reception."  That may have worked in the early 90's but seriously...
"Oh, you called? I wonder why it didn't come through?" Playing dumb never works with me!!

Anyways...I'm not sure what my revenge will be but it will be sweet.

The funny thing is, if I leave the house for 1 minute, to walk to the mailbox and they can't find me, I get a frantic call...Where are you?  Why did you leave?  When are you coming home?  Are you with someone?  Sheesh...Annoying!  Pay back is going to suck for them!

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Monday, January 20, 2014

Today was a gift

Today was truly a gift!

Today, for my 29 gifts project, I wanted to get some daisies, just some simple little white and yellow daisies and take them to the assisted living center and hand them out.  I went to the floral shop and they were $3.65 a stem!  I knew I couldn't afford that so I thanked them and started to leave.

I know the people that work there.  When I do weddings, I get my flowers there.  The lady that worked there, Gaye, told me to just get them at the grocery store.  I said 'okay' and began to leave, again.  Then she said, "Are you doing a wedding?"
"No. I just wanted them.  I was going to hand them out to people at the assisted living center."
"Why? Just for fun?"
"Ya."  I explained how I wanted to give away 29 gifts in 29 days. She told me to hang on and came back with 2 dozen roses!  She gave them to me for free!! Totally free!!

What I really wanted to do was throw my arms around her and hug her but the realistic side of me thanked her profusely.  We took our beautiful roses and went straight to the assisted living center.

There is something about the elderly.  They are so special!  Wisdom of so many years lived, shines brightly in their eyes!  As we walked in, there was just one lady sitting alone on the couch.  We went up to her and said hello and handed her a rose!

Her beautiful eyes filled with tears and in disbelief she clapped her hands together and said, "You brought me a rose?  This is for me?"

Ahhh....it was such a tender moment. I could hardly keep the tears back myself!  In that moment, not one single crazy thing I deal with made any sense to me!  I couldn't understand how I could be so consumed with my busy, little life and this sweet soul sits alone.  Loneliness is one of life's greatest trials if you ask me.  Worse than poverty even.  I wanted so badly to see my own grandmas!  I just hugged this sweet woman and held her hand so tight!  The love she had for that rose and our visit seemed to fill every crack in my heart!



 Look at how sweet she is? Honestly, when was the last time you had this much joy?  So much excitement that you clapped your hands and stretched a smile from ear to ear and tears of happiness flowed freely from your eyes?  When?  For me...the only tears coming out of my eyes are tired ones and angry ones but she brought me joy and I feel really lucky and selfish.

We met lots of beautiful woman.  All very happy and so pleased to have been 'remembered'.  It was really such a great experience.  We gave every single rose out! 

I will tell you this funny little story though.  We gave one lady a rose.  She was walking around and I told her how the rose matched her blouse.  She looked at the rose and said, "Well, this thing looks like it has seen better days!" There was absolutely nothing wrong with the rose, it was beautiful so I just wished her a happy day and we moved on to the next group of residents.  Well, this same lady followed us and she said to me, "Get out of here!  I want you out of here!"
She seemed altogether so I wasn't really sure what to do.  I thought maybe we really should leave and just let the nurses hand out the rest.  Maybe we had offended her in some way.

The nurse came to her and told her to settle down.  I asked the nurse again if it was okay that we stayed and she assured us it was fine.  A few minutes later, this sweet lady came up to me, right in my face and said, "If you don't get out of here...I'm going to shove this rose up your butt!"  I wasn't sure if I should laugh or cry.  The lady we were talking to started to laugh!  The kids and I just kind of stood there dumbfounded.

The next thing I know, this poor soul is beating the nurses with the rose!  She is literally just whipping two nurses in the face, all over with this rose and petals and leaves are flying everywhere!!  We ran, RAN out of there!  We were so scared!

Anyways, we went back to the main building to find some more people awake to give the rest of the roses to.  This nurse that got beat up came in and I apologized for getting the lady upset and she said it's just how she is.  I thought she deserved a rose for getting the daylights beat out of her with a rose!

I know the sweet lady didn't mean to be mean.  I know that her sweet personality has probably been stolen away by dementia but all the same...it was so unexpected...it was awkwardly funny!

So...it was a decent day!  I'm glad for these little tender mercies and so glad I took this project on.  It's going to be so hard to decide at the end which gift I loved the most!
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Sunday, January 19, 2014

29 Gifts Week Two

Another great week of giving!  I'm not going to lie, it's been a challenge to come up with different ways to give but it's been great.  Here's the run down. 

Day 9- I went to Walmart and taped these little notes of encouragement on the back of products where tired, overwhelmed moms would find them.  I love the one that says, "Love this life."  I remember those long days of little kids whining and crying and there were days I would have rather been doing just about anything else than being a mother.  The time flies and I wish I could slow it down...someday, they will look back on these tough years and miss them!


 Day 10- I made a video for my kids.  Just a little history with our family song and to remind them to keep on keeping on!  They have come so far!  I loved walking through memory lane and scanning photos to put the video together.
Day 11- This was my favorite gift of the week!  I made a ton of chocolate chip cookies.  I put them in little bags, 50 in total and we took them down to the soup kitchen.  We got there just a few minutes before dinner was served and the room was packed!  We gave out all 50 bags! The kids came with me and talked to the people as we handed out bags. I will never forget the smile on their faces as they got their cookies!  You would have thought there were $100 bills in those bags.  It probably did my heart the most good this week.  I have a very special place in my heart for chocolate chip cookies...there's a bigger story here which I will share sometime. 

Day 12- I sent postcards!! I wrote little inspirational thoughts on them and opened the phone book and wrote down random addresses and mailed them.  There was something exciting about sending out a warm thought to the universe and wish I knew where they were going and if they were helpful at all! 

  Day 13- Bookmarks.  I made these very simple, very easy bookmarks and took almost 100 of them to the public library for people to help themselves to. They don't look like much all in a pile like this but they look so cute coming out of a book and who doesn't need a bookmark?


Day 14- This was an interesting gift.  The day I gave this day, was Shelbie's transfusion day.  There is a lady who works at the cafeteria who is the nicest person ever.  She always smiles.  Of all the workers there, she is by far the friendliest. Not only is she kind and nice to me, but I look forward to seeing her on infusion day.  There is just something about a smile that makes everything better.   Anyways...I wrote her a letter thanking her for the gift she gives me every month.  As I handed it to her, I told how much I loved her smile.  She told me that she has watched me come and go from the hospital since my kids were tiny!  I was surprised that she had been watching me in the same way I had been watching her.  I loved that moment.

 Day 15-  Quite a long time ago, I bought some tanning passes...why?   I have no idea.  It's not really my thing.   I had overheard a friend say how much tanning helps her with her winter depression.  I went in and had them transfer them to a gift certificate for her. When she wasn't home, I slipped it in her front door.

 Day 16- I know a woman who works so hard!  She puts in incredibly long hours at her job, I'm talking 12 hours and then some.  She is always friendly and happy even when she is tired.  She also has MS but you would never know it.  She attributes her carefree attitude for doing so well, like she basically doesn't have any symptoms.  I love little surprises. I had to do a little undercover work to get this on her desk on a weekend when the office was closed.  She will see it Monday morning!


I can't believe more than two weeks is already done!  It has been an incredible journey and I am so glad that I took this on.  You should really try it!  Seriously, it's life changing.
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Friday, January 17, 2014

Wait...What?!

Here's an odd little twist to the day.

Two days ago, I received these in the mail.
Update packets from The National Institute of Health.  Yep, the big boys of scientific, medical research.

In 2004, I met this amazing Hematologist from the National Institute of Health, her name is Dr. Blanche Alter.  She is top notch in the world of bone marrow failure syndromes!! She has been researching and studying bone marrow failure syndromes her whole life.  She is in her 70's and still going strong.

We started our SDS journey with Doctors from The Children's Hospital in Toronto.  They started out being helpful but then became hell-bent on finding the gene for SDS and kick us to the curb.  It was clear that my kids had some quirky things that didn't exactly fit the SDS profile and they didn't want us muddying the waters of their precious research.  They went so far as to calling our doc, at the time, to tell her that there was actually nothing wrong with my kids.  The kids were pulled from every single medication.  For 4 years, they went without treatment.  4 years of sick kids, in and out of the hospital.

So, meeting Dr. Alter in Cincinnati where we were attending a seminar on SDS was an answer to prayer.  She seemed so important, like she wouldn't have the time for me but I approached her anyways.  I told her the story of Toronto and she said, "Given your children's history, there is clearly something wrong with their marrow.  Let me add them to my study of SDS and bone marrow failure syndromes."

I was so happy!! We spent the next months sending blood samples, tissue samples, bone marrow samples, even saliva to The National Institute of Health; anything she wanted, I sent her.  In return, we were part of her study, she touched base with us periodically and that was that.

When this packet arrived this week, to update our records and fill them in on how things have changed over the year for the kids, I wasn't sure what to do with it, given that we are playing with a new ball of wax.  I called the nurse, Lisa.  Lisa is awesome and though I have never met her, talking to her on the phone feels like connecting with a good friend.

My message to Lisa went something like this, "Hi Lisa, It's Kath from **.  I received the update packets this week but needed to let you know that Dr. Shimamura has found a new mutation that is making the boys sick so I'm not really sure how to handle these packets now. Call me back."

She called this afternoon.  Her conversation went something like this..."Did you tell me Dr. Shimamura found the gene for your boys?!"
"Yes.  She did.  A brand new mutation of a known gene and it is not SDS."
"Kathy!!!!  This is big!"
"Ya."
"NO, THIS IS BIG!! MONUMENTAL. GROUND BREAKING!  WOW, I am speechless.  I told Dr. Alter yesterday about your message and she was speechless! This is huge! You know this is huge right?  Like, this is going down in the record books huge!  Your family is going to be published and will forever be in the archives of medicine! It's big!"

At this point.  I was speechless.  I was stunned. It was like getting the news all over again.  Overwhelming.  Wow! This is huge!  I had totally forgotten that NIH was working on my family too!  Then I had this incredible feeling of gratitude and wonderment that I have had the greatest minds in the world, helping me take care of my kids!  The greatest! The best there is in the world of bone marrow failure!  Only God could have done something like this!  He put me in the right place, at the right time with the right things to say to doctors who really could have dismissed me as a 'crazy' mom.

Of course, NIH won't know what the new mutation is until Dr. Shimamura publishes it.

The little twist was that Dr. Alter had just had a meeting a month ago with her staff and said she wanted to take another look at our family since she has found some better ways of exacting the genome study and wanted to try her technique to see if anything came up.  That is why they sent me the update packets.  Lisa said our family has come up a few times as someone she wanted to focus on next.

I didn't realize until then, that all these researchers are really in competition with one another, if competition is the right word.  They don't collaborate really, independent of one another is a better way to state it.

Lisa spent a lot of time helping me understand the promoter region, how much more rare having a mutation there is than in an actual gene.  I told her what I thought it was going to end up being and she agreed, it is likely that my guess is totally possible, plausible.  That made me sad because it isn't good news to me, she agreed, things could get scary.

She also explained how Shelbie could actually have it even though it is an X-linked disease and that was very helpful.

Even though, I am feeling so exhausted in life right now, I can't help but feel an overwhelming sense of gratitude to see the wonders of God!  Really, the way he has orchestrated things over the past 21 years makes reason stare!  It's one staggering thought after the next!

I still don't understand the timing of it all...Lisa couldn't say enough wonderful things about Dr. Shimamura.  She said the fact that she found a mutation in a promoter region is ground breaking in and of itself...that is cutting edge technology and she wasn't sure NIH could have done that!  Again...only God can explain something like this.

I told her that I had expected to have clinical answers by now and she said, "Noooooo.  This is brand new.  Not one lab in the world is set up to test this clinically.  You are going to have a wait until Gene DX can get their lab set up and technology in place to make this happen."

At least I know to stop waiting for the call today.  Maybe today...must be today....Patience...It's not all it's cracked up to be.

Another staggering day!

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Thursday, January 16, 2014

Walking Dead


We are tired! Tired is really such a watered down, limp word to describe how we really feel!

Exhausted
Wasted
Wearied
Zapped
Worn-out
Bone tired

Those words come close to describing our fatigue but still not quite there.

Today was infusion day for Shelbie.  Grifols, the plasma manufacture changed the protocol for administering the blood product and instead of giving fluids with the plasma, the fluids have to be given just prior to the plasma.  That added more than a couple of hours onto an already very long day!

The roller coaster of a life we live is starting to wear on us.  I try to keep tabs on everyone but apparently, I myself am half dead and didn't notice.

I think the tell-tale sign was the fact that when I picked Sam up from school today, he was fast asleep before we even got out of the parking lot!  We went straight to the hospital and he crashed in the chair for 3 hours and I crashed for a couple.  Shelbie was out all day!

I think I napped for a total of 4 hours today and still, I feel like I haven't slept in months.  Quite literally months!

I have no clue how to fix this either.  In theory, I need to slow down but in reality, that can't happen.  I thought of taking a little trip to get away, isn't that what people do when they need a break?  Well, that won't be happening either. So, I guess I will just have to hope for the best that we survive the next few months.

Still no word on finding a lab to process these clinical tests!  Still living in limbo.  Still feeling like the never ending treadmill of problems is kicking our butt!  Still.

Tomorrow, I get to clean 18,000 sq. feet...I suppose that doesn't help my fatigue. Ahhhh, welcome to my world.

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Tuesday, January 14, 2014

Life...

We are so stuck these days.  Stuck waiting.  I have never been convicted of anything, but I can imagine those hours waiting for a jury to deliberate on your future must be maddening.

In a way, that is how waiting for these clinical tests to start feels.  Just waiting for someone to deliver the life sentence.  I don't care how dramatic that sounds, its how it feels not to mention the disconnect that one's brain does to protect itself from information and emotional overload.

The brain really is remarkable.  It's amazing how it can hold on to some order in the midst of chaos and reign over the wreckage with resilience.  I have watched myself go through that process but recently, watched my kids.

I watched Shelbie completely fall apart last week but an hour later, it was as if nothing had transpired.

Last night, I had a quiet moment with Sam and showed him the video I made.  I thought he would be excited and enjoy looking at all those cute pictures of him.  Not even half way through, I felt his body shaking.  I looked over to see tear just falling from his eyes, puddling in his lap!  I just held him tight.

When it was over I asked him to tell me what he was feeling.  "I don't know.  It's so sad what I have had to live through and what I have survived but so happy that I have done some really cool things. I just can't believe that this is my life. I just can't believe it!"

In a way, it's like standing on the edge of the Grand Canyon for the first time!  It's that feeling of awe with an equal feeling of fear for what's coming next!  What is this life capable of doing to us next?

It was a sacred moment for Sam.  A feeling of blessing and fear all wrapped up neatly into one package.


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Sunday, January 12, 2014

If we hold on together

29 Gifts Day 10.

My kids keep asking me when I am going to give them a gift.  I have had something special in mind for them for several days but it took me awhile to make it.

Today, I want to pay tribute to my kids.  They are my inspiration, my courage, my exponential faith.  They are what I consume my life with and I wouldn't want it any other way!  I often hear mothers say, when their kids are sick,"I wish I could trade them places."

I'm a coward.  I am not the kind of mother to say that.  There is no way I could handle the health problems that they handle and still get up everyday to challenge their dreams.  There is no way.  I would not want to trade them places.  I do, however, wish beyond wish that they didn't have to be sick in the first place.  NO one, should have to spend a lifetime struggling for good days to come.

We have experienced three amazing Wishes from Make A Wish.  Shelbie has recorded two albums, gone through a total of 1.5 years doing chemotherapy and runs a successful photography business in between plasma transfusion each month.

Spencer mastered snow boarding, skiing, skate boarding.  He challenged mountains and prevailed despite a broken back- twice!  He has no fear of the obstacles in his way...he moves them.  Now, he serves the Lord faithfully and does it while being sick 90% of the time but you will never hear him complain about that.

Sam is incredible.  He has trained day in and day out to jump tall buildings in a single bound.  Literally.  His parkour skills are amazing!  He flips off walls.  He doesn't let the fact that his bone marrow is only functioning at a mere 20% slow him down.  He lives with nearly chronic hives when he works out but that doesn't stop him either.

When they were little, this was our theme song- If We Hold On Together.  Every night, for years, I would play this song on the piano as they fell asleep.  The words describe perfectly our lives.

Chronic illness has stolen so much from us.  It has bent us, but we have not broken. Here's to my three, precious, one of a kind, ANGELS... I love you guys!





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Friday, January 10, 2014

29 Gifts weekly recap

I have completed a full week of my 29 Gifts project.  It has been one of the most interesting endeavors I have embarked upon in quite sometime.  The most striking feeling I have had is how surprised people are to be on the receiving end of kindness.  Makes me wonder if we are so caught up in ourselves and our own lives that he have stopped being kind?

Gift 1- I played the piano at the nursing home.

 Gift 2- This was fun!  I shuttled college kids from the grocery store to their apartments.  I met some really cool young adults.  One young man was studying to become a researcher for Multiple Sclerosis.  We had a brief visit about autoimmune disease.  All the kids I drove said, "Why are you doing this?" or "Am I suppose to tip you?"  They were surprised when I said, ,"I just want to be helpful today."  It was a cold day and it was their first day back before the new semester started so they were very grateful.
 Gift 3- Shelbie had a friend that was headed back to school in Utah.  He loved my cheesy potatoes and always hinted to Shelbie that he would love a big pan of them.  I surprised him with just that!  He sent us a picture of him eating his last bite!
 Gift 4- This might have been my favorite gift so far!  I wanted to make little treat bags for the single, middle aged women going back to college!  I included some candy, pencils, a notebook, highligher, pen, sticky notes, cool little tabbed dividers and a thought on a card.  They turned out so cute.  I walked around campus until I found just the right women.  One lady was sitting in the cafeteria.  She was slumped over her lap top with fear and trepidation leaking from her eyes; it was the first day of classes!  She caught them rolling down her cheeks with some crumpled confidence!  I went up to her and said, "I made these fun little back to school gift bags and wanted to give you one and wish you a good semester!"

Those already exhausted eyes looked up at me, "Why?  Why did you do this?"
"I went back to school three years ago.  It's hard starting back when your years exceed your peers.  I remember the first day of classes.  It was difficult.  I was just hoping to make your day a little brighter."

A smile covered her face and lightened her load.  As I walked away, I felt the muscles in my own face, stretching towards a smile I could hardly wipe off.
 Gift 5- We never send mail anymore.  I mean regular, old snail mail.  We send emails and messages in the form of 140 brief characters and symbols we hope the person on the receiving end 'gets'.  We rarely sit down to pen down some thoughts of gratitude.  I did that, for gift 5.
 Gift 6- This was another favorite of mine!! I went to my favorite store on earth.  I love Barnes and Noble.  I love walking through the doors with the smell of fresh ink and paper greeting me at the door!  I love being surrounded with knowledge, creativity, dreams.  I love it!   I went straight to the cashier and bought two $10 gift cards.  I turned around and immediately gave one to the lady behind me.  She was stunned but not as stunned as the cashier!   Apparently, the kindness of strangers was not a familiar thing for either of them.

I walked through the store and saw an elderly woman with a basket full of her selections.  I walked up to her and said, "I just bought this gift card and wanted you to use it towards your purchase today."  She was completely speechless! She tried to say something but stumbled and stuttered over her words! I could feel some unexpected emotion bubbling to the surface so I wished her a pleasant day and hurried off just as the tears started streaming down my face.  I don't know why I started crying.  Giving and gratitude is a powerful thing I am learning more deeply than ever before.
 Gift 7- We had a pretty decent storm this week.  When I went to pick up Sam from school, I decided to scrape the snow and ice off all the teachers vehicles!  This was interesting.  I saw one teacher come out of the school.  A teacher who I had had words with a few years back.  Whenever we see each other, we act like we are both invisible;  so mature, I know.  I decided it was time to mend this rift.  I hurried over to her car and scraped the windows before she arrived to her door.  She saw me and said, "What are you doing?"
"Ya know, I just thought after a long day in the classroom, the last thing you would want to do it scrape your windows."
Her face softened and she thanked me.  I'm glad it worked out that way!  Another teacher came out, I was getting back in my car when I heard her say, "Wow! Someone loves me!"  She stood there looking around and wondered how all the windows got scraped!  That was cool to be anonymous!

On our way out of the parking lot, we pushed two kids out of snow drifts.

When we got home, Sam and I had a snowball fight and I built Olaf, from the movie Frozen, for Shelbie!  She had asked earlier in the week when I was going to giver her a gift?  I will post a picture of Olaf later.
 Gift 8- I gathered up all the quarters I could find around the house.  I emptied our loose change jar, dug through pockets, sofa cushions and cup holders in the cars.  I came up with enough quarters to place a stack on each washer and dryer at the laundromat!  The best part was that there was not a soul in there when I placed them!  I would have liked to lurk around and see what people did with all those quarters!

This has really been an eye opening experience.  I find it amazing that we each seem to live such isolated lives.  Technology and brief, superficial encounters seem to rule the day.  People are not use to kindness.  I have often wondered why?  We live all together in this world, yet so far apart.

The fact that I have had to give a lot of thought to each gift and a lot of planning is what makes this different from the day to day services I render.  There have been plenty of times when I thought, "I'll just skip today." It's been a hard week but I forged on and I am so glad I did!  I had something great to look forward to each day.  Each gift was a reminder to me that all it takes is one little act of kindness, from one little inconsequential person for one little moment!  It's been pretty cool!



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Where I stand

We are nearing the end of another tumultuous week around here.

I am exhausted.  Over the past two nights, I have only had about 4.5 hours of sleep.  Thursday, I had to drive to Kingdom Come, 2 hours away, for a business meeting...in a snowstorm! Needless to say, I have kept Pepsi in business over the past few days.

Last night, Shelbie decided we weren't having enough fun so decided to have an Asthma attack.  At least I think that's what it was!  I had just gotten to bed at 1:00am.
1:45 the light goes on in my room and Shelbie is starved for oxygen, stumbling to my bed.

She has had asthma since she was 6 years old but it was never that bad and only really affected her at night.  She seemed to have a harder time breathing at night.  The Pulmonologist called it Nocturnal Asthma.  It seemed like she grew out of that, if one can grow out of Asthma, so she hasn't taken meds for it in over 4 years at least.  Sometimes, it would act up in the day but nothing a couple puffs of Advair couldn't handle.

Thursday night was crazy!  It didn't help that I was so worn out and disoriented from lack of sleep, I had no idea what to do.
I kept thinking...I'll give her 5 more minutes to catch her breath and then I will call the ambulance
                        In 5 minutes, I will drive her to the hospital...
                        Has it been 5 minutes?....
So, indecisive.  Things finally turned around after about 10 min.  Maybe it was just a panic attack or something but can you have those in your sleep?  Just another weird thing.  We decided it would be best if she slept in my bed so I could keep an eye on her.  She was afraid to sleep. Another night without sleep!

Oh well...it's Friday.  The Weekend.  A chance to catch my breath.
                       

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Wednesday, January 8, 2014

One in a million

If you haven't read the post just before this one, you should probably catch up there...before reading this.

Shortly after I got the message from our Oncologist that the orders have been sent to GeneDx, it occurred to me that I haven't even asked him if he would tell me the name of the disease.  Maybe, if I asked really nice and promised a box of donuts or something, he would tell me, give me a hint.

So...I asked him.  What a novel idea.  Stress slows your brain down just a bit...don't judge.

Anyways, I asked him.  You know what he said?

He said something that yet again...I was not prepared to hear!

Imagine. That?!!

The boys have a brand new, shiny, never before discovered mutation of a known gene!

Can you imagine how hard I fell to the floor?  So, correct me if I'm wrong...depending on how many phone calls Dr. S has made in the past 6 weeks, it stands to reason that quite possibly, my boys are the only two in the entire world...ENTIRE WORLD with this disease.  Although...I happen to know that she made one other, similar call, the same day, to another family with a boy and said essentially the same thing!  So, maybe there are three.

Because that isn't strange enough...here we go with part two.

The defect isn't in the gene.  It's in the Promoter.

The Promoter, thanks to an all nighter of pacing the floor, reading articles, is the area just upstream of the gene that initiates the transcription of the gene.  It tells the gene what it is going to be made up of.  From my little research, and....keeping in mind I am not a geneticist...

The Promoter is a big part of the RNA and Lactase chains- the energy and metabolic parts of a cell.  It's a big deal, an important deal if this guy, the Promoter gets it wrong!  And that is what has happened.

The part I can't wrap my mind around is that this is genetic!  I am a carrier, my mom is a carrier, my sisters are possibly carriers and how is it that with all the boys in our family, mine won the unfortunate lottery.  It seems more likely that this was just some OOOPS when the cells were dividing back in the day but it wasn't.  This is real life.

This is big, to me at least.

Our doctor told me not to be worried.  He said he doesn't think the prognosis will be *worse* than Shwachman Diamond Syndrome.  Worse.

So, you know how the only way I can sometimes cope with this kind of crap is to find something to laugh about?  I found it...Yup. About 2 am.  I read this line:
  Although the term "bidirectional promoter" refers specifically to promoter regions of mRNA-encoding genes, luciferase assays have shown that over half of human genes do not have a strong directional bias.

Did you see that word?? Luciferase!  I knew it!!! This disease is of the devil!  It is right there in black and white. Wait!! Stop!! Does that mean the devil is in me?  Not funny anymore. ;)

Alright, well, now I get to go clean houses then spend the afternoon at the doctor with Shelbie then come home and head to work until about 11pm.  No rest for the wicked...or the Luciferase!
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