Skip to main content


Showing posts from January, 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.


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…


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 s…

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…

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 luck…

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 Fa…


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 ar…

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 pu…

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 …

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 …


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 …

Walking Dead

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

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…


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…

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 chem…

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 t…

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 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 Adv…

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.  Althoug…