Skip to main content


Showing posts from January, 2013

The world according to me

Well, seems I hit a nerve with that last post.  Sorry if I offended anyone, well, I'm sorry but I'm not.  The brave anonymous person who posted a comment on my last post was right, everyone does have their cross to bear whether it's a laundry problem or a dying of cancer problem and everything in between.  If there's one thing I've learned, it's to never underestimate the challenges God can give you.

I try really hard to deal with my challenges the best I can.  I usually do a lot better at it than I have this past year.  There are really no words to describe how overwhelming this year has been.  If you spend any length of time in this house, it begins to show.

My parents have been here for a week and I said to them this morning, when I felt things getting a little crazy and out of control, "You better leave, our dysfunction is showing."

They have been helpful in many ways.  It's just nice to have someone else around to help me with the little t…

Not quite the same

Sometimes, I'm quite content just living in my little messed up world, venturing only to the grocery store and any other necessary places.  I had no idea, 15 some odd years ago that life with Shwachman Diamond Syndrome would get as hard as it has.  Not just the progression of the disease but I was unprepared for the emotional, psychological things it does to you, to me as the caregiver.

I guess I thought it would be something like this; the doctor says, "Your kids have Shwachman Diamond" and I think wow, okay.  I spend the next month or two absorbing the bad news but then life takes on this new sense of normal and I think, this isn't so bad, I can deal with this.  The medications are organized and dispensed on time, we have the hand washing and germ-o-phobic protocol down and things are going well.  They get sick, I fix them and we are fine.

Back then, when they were little, I always thought everything would just stay the same.  Theoretically, I knew it was a progre…

Whining fest

I think this blog is starting to sound like one post after the other of me whining!  It seems like all I do anymore is whine about one thing or another.  I don't mean to, I really don't but it's kind of starting to sound like that.  Oh well, why stop now?

Still waiting for the insurance company to give the okay to start intensive testing on Sam to figure out this knee issue.  In the meantime, it has been one crazy kind of week.

Sam spent nearly all day at the hospital in a nearby town on Tuesday.  On Wednesday, Shelbie did her time here in town for her monthly transfusion.  It was long but went well, no reactions.

Thursday was spent trying to catch up on work I missed Tuesday and Wednesday.

Friday, not so good.  Shelbie ended up in the ER because of extreme pain.  Came home late Friday night.

Saturday, not so good.  Shelbie woke up worse than Friday!  Took her back to the ER for some help in getting on top of the pain.  Why is when you go to the ER twice in less than 12…


In the world where we live, it just isn't's complicated!  I had no idea what was in store for us today, no idea!

Took Sam back to the Ortho surgeon who called to say he wanted to see us again.  I love our ortho doc!  He is so smart and spends a ton of time with us, answers all sorts of questions and does his research.  He had a feeling that he should have a musculoskeletal specialist look at the MRI and x rays. They spent an afternoon looking at each little slice of the MRI.  What they had originally thought was an ACL shredded down to almost nothing is actually Sam's normal ACL size!  Abnormally small!  There are no apparent tears or remnants of shredding to be seen.  They did however diagnose a piece of bone on his patella that had been sheared off that was missed the first time around and a large tear in the ligaments that run up the side of his knee.  After being in a brace and crutches for a month, it seems that those two issues are healing okay on their o…

Ready or not

Just in the past day or so, I feel like I am ready to take on 2013 and all it has to offer.  So, far, it has offered up a full plate.

I am still waiting on a surgery date for Sam!  Who knew this could be so complicated and drawn out and Americans think you have to wait a long time in Canada for medical treatment!  It's been 4 weeks since Sam's accident and still no news on when this is going to happen.  I am getting a bit anxious with each passing day but I keep trying to remind myself that there must be a good reason for the delay.  Whatever the reason, I have a feeling we will find something out this week.

Shelbie is having her transfusion this week.  I have never been so excited for transfusion day as I have this one!  She has been miserable!  Just totally miserable for an entire month.  It takes every ounce of energy to get through the day.  I still find it hard to understand the whole Mitochondrial stuff.

Spencer is doing much better!  He got sick on Christmas day and ju…

A little lost

It's been weird the last couple of days without my friend Carma.  I used to run over to her house several times a day, scramble her eggs for breakfast, grab a taco salad from Taco Time for her dinner and keep her stocked with evergreen Lifesavers.

Being a caregiver is hard when the person you have cared for is gone.  All of sudden, you wander around trying to find your purpose in life again.  Your job just vanishes without warning.  The kids have been gone for the New Years celebration with their dad and without Carma to keep me company, it's been pretty quiet and lonely.

Her family is busy getting things ready for the funeral this week and I feel like I should be doing more but it's not like I have known her all 76 years of her life, just the past 8.  The boys were asked to be Pall Bearers and that is really special.  When they were asked, you could see this reverence and respect for Carma rest gently on their shoulders.  It's quite an honor, she has several older gr…