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Showing posts from September, 2011

My Holland

A little while ago, I posted one of my favorite stories called, Welcome To Holland.  If you missed it, go here to read it.  I think about 'Holland' nearly every day.   Yesterday as I waited in the car pool lane, I thought about all the things I actually like about My Holland. I'll admit, at first it was really hard to think about what I like about all this, in fact even the word like used in reference to our life with Shwachmans and all the other problems seems to be an oxymoron.

I dug around in my distant thoughts and came up with a short list of things I like about Holland.
I really like that since I lost my job, I have been able to be home with my kids again and take care of them and nurture them like I was meant to do.  I can't do it all, I don't want to do it all, I just want to be a mom. My vocabulary has grown.  I no longer stutter when I say Immune Thrombocytopenia Purpura and I can spell it too!I have become freakishly interested in the status of my kids&#…

The Path

"When you are on the path you will know it, when you are not on it, you will know it."  Tao of Lao Tze.  I have no idea who this guy is but I like what he says.  He goes on to say, "The process of living life allows you to feel as if you have found the path."

I like these thoughts.  I know that right now in this period of my life, I am not on the Path. Well, I am on A path but not the path I want to be on.  I'm on the 'crazy' path.   Incidently, did you know the word Tao means 'path'?  I believe we find our path because of our life situations.  Some of life's experiences are energizing, moving us effortlessly along, sometimes we find ourselves half dragging down the path. 

Dragging myself down some path is what feels familiar these days.  I have allowed myself to be consumed with the hard things this summer has dished out.  I realize that while I may not be depressed in the traditional sense of the word, I am definitely distracted by ever…

It finally hit me

While I sat by Shelbie's bedside on Thursday, once she fell asleep from the loading dose of pain meds they gave her to control the side effects, I did some thinking. Deep thinking.

When I was engaged, I read lots of books on marriage.  I wanted to be well prepared for what I was committing to.  When I got pregnant, I bought the bible for pregant women, What to expect when you're expecting.   I'm sure if you have kids, you know the book too.  When the first baby was born I bought the sequel, What to expect the first year.  I think I highlighted every page.  I read that book faithfully along with plenty of other companion books.  When they got a little older, I read books on teaching kids value, teaching kids to work, teaching kid the birds and the bees.  When my first experience with the misguided, brain malfunction teenage years began, I read books on raising teenagers.  When those tactics failed, I read books on the biggest mistakes parents make.  When diseases started c…

Mitochondrial Awareness Week

This week is International Mitochondrial Awareness Week.  If you are like me, you've never even heard of the disease.  You might remember hearing the word 'mitochondria' from biology class back in the day but maybe not...I didn't.  When doctors started playing with my kids in the mito arena, I started feeling a little uneasy but at the same time, knew they would probably find some problems and sure enough they did.

Mitochondrial problems for us are secondary to bone marrow failure; at least for now.  We started the mito cocktail just a couple of months ago but haven't seen huge improvements yet.  Our doctor said it could take awhile.  I am still learning about the process of this disease and have only dipped my toes in the deep waters of the mito world.  Part of me just doesn't want to know but the other part wants to know all I can. 

A couple of months ago, I joined an internet support group for mitochondrial disease and lurked in the shadows as I read about…

The Great Alarm

'The moment of great alarm'...this phrase has been rolling through my mind like a wall street ticker tape.  I've heard before and understood the context in which it was stated but I got to wondering what it means to me.  Webster defines 'Alarm' in these ways...

1.asuddenfearordistressingsuspensecausedbyanawarenessofdanger;apprehension;fright.
2.anysound,outcry,orinformationintendedtowarnofapproachingdanger:PaulRevereracedthroughthecountrysideraisingthealarmthattheBritishwerecoming. 3.anautomaticdevicethatservestocallattention,torousefromsleep,ortowarnoffire,smoke,anintruder,etc. 4.awarningsound;signalforattention. At first, I have felt that for me it means the moment when all my resources have been saturated , I am used up and I have nothing left but panic and there never seems a shortage of that.  The entire summer has been packed with back to back messages of bad news.  Overwhelming and astounding problems have been uncovered and it has been alarming to me.  'Dis…

Would you rather...

A.  Go for a root canal
B.  Have bamboo placed under your fingernails
C.  Endure an hour of Chinese water torture
D.  Sit at the hospital for 12 hours while you watch your daughter endure the horrible side effects of
       Plasma transfusion
E.   The first three- A,B &C

The correct answer is 'E'.  Enduring the top three feels much more do-able than 'D' but that's what's on the docket for tomorrow...or today...depending when you are reading this.

I don't know if I'm just tired or what the deal is but I would do anything to not have to go through this.  It sounds awfully selfish since I'm not even the one having to be put through the wringer for 12 hours or so.  I'm just the mom...the mom who is tired of 19 years of watching her kids go through hard things without an end in sight. 

Each hospital visit, each doctor's appointment adds more and more dread to my day.  It's a rut I am not happy being stuck in.  It's a sad feeling.

G…

I like to believe

I like to believe that I am super human.  I like to believe that I can do it all.  I like to believe that I am always on top of my game.  I like to believe that I always do my best.  I like to believe that I am someday going to make 'Mother of the Year'...not on a global level of course, just in my heart.  I like to feel like it is an award I am worthy of.  I want to feel like I can really do this whole motherhood thing and do it well. 

I like to believe that I never have a bad day.  I like to believe that no matter how rough the road or tough the adversity, I always see the positive.  I like to believe that I never get frustrated or feel hopeless.  I like to believe I have faith that will withstand anything. I like to believe that I am on the right path.  I like to believe that no matter what, I can find the joy.  I like to believe I know who I am, I know whose I am. 

This weekend as been a little unbelievable! I guess I have taken the news of Shelbie a little harder than I…

Now we're getting somewhere...

Finally...our immunologist from Seattle called this morning!  It's one of those things that is so complex and again I was told that there is so much water under the proverbial bridge, it's hard to pin down, "without a shadow of a doubt" what is going on but we have a good start. 

Shelbie has very low titers to her immunizations and her pneumonia titers are nearly non existent so that was scary news especially since we are headed into winter and flu season.  I talked about this virus that keeps morphing into one thing or another and our doctor wasn't surprised after seeing her labs and other results.  Even though her immune numbers are low but still within normal ranges, they are just not functioning normally.  That has been the hang up all along.  Most docs look at the numbers then scratch their heads as to why she is still sick all the time, they haven't considered the function of those numbers. 

So, the short story is that Shelbie has Primary/secondary Im…

Keep Your Fork

Last night, I helped a friend present a RS lesson on repurposing.  I took my latest treasure, an old screen door.  I am using this door as our family vision board.  It's a work in progress and I will post more over at Inside Story at a later date.  Anyways, I got our family motto printed back up and taking front and center in our vision board. 

What is our family motto you ask?  It says, "Keep your fork, the best is yet to come".  I use to have this statement stenciled on our kitchen wall but when I repainted, the quote disappeared and I haven't put it back up.  There's a story behind this quote and it is one of my favorites so I thought I would post it here.  I think it may become one of your favorites too...


Keep Your Fork... the Best is Yet to Come
There was a woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things "in order," she contacted her pastor and had him come to her hous…

Something to ponder

Hmmm...what would you do?  Tonight, Spencer had to type up a paper for school. He got busy and I went up to tuck Sam in and play the piano.   When I came back down, he asked me to read it and show him how to work our printer that has had a mind of it's own lately. 

It was the weirdest thing to read.  Some of his words were typed with all the right letters but in the wrong order so for instance the word 'academy' was spelled, 'acdemay'.  At first I thought he just didn't know how to spell the word but in looking at the misspelled word, it isn't even spelled phonetically. If he didn't know how to spell, I would have expected something like 'ackadamy'.  He told me it was 'academy'.  I pointed out that he had spelled it wrong and he said, "No I didn't." and he spelled the word back to me.  He knew how to spell it.  I showed him again, that is was spelled wrong and he read it on the screen and said, "No, that's right. …

Steering the river

This morning, I had to drive my friend down to the city for a doctor's appointment.  Her doctor had such a nice quote painted on his wall.  It was a good reminder for the start of another week requiring a great deal of patience. 

"Time is a flowing river.  Happy are those who allow themselves to be carried, unresisting,  with the current."                             
                                            Christopher D. Morley

Ironically, while I sat there staring at this quote, a nurse from the Immunology department at Seattle Children's called me.  I have been trying to get ahold of our doctor to see if she has any test results from June and if she had any insights into fixing Shelbie's infection.  The nurse said, "Just so you know, it takes anywhere from 6-12 weeks, sometimes longer to get tests back so there is nothing yet to report on."  Three months!!  Good grief!!  I told her I at least wanted a conversation with the doctor so she could advis…

My dream job

Yesterday, while the radiology tech was mixing the contrast for the CT scan, I inquired about who the radiologist was that would be reading the scans.  She told me the name and I flipped.  I told her to forget it, we would come back when a different Radiologist was on duty.  She didn't even argue with me which I was expecting.  Unfortunately, this particular doctor was on duty the remainder of the week!  When she told me that, I said, "Well, that's fine but I'm afraid we will have to go elsewhere for the scans because I refuse to deal with that doctor."
She replied, "I understand.  You should know that this is his last week here, the hospital has dismissed him."
"It's about time!"
"We understand but we hate to lose your business." 
In my opinion, if a hospital is going to continue to employ people who have had countless complaints filed against him, they are going to continue to lose business.
She was really nice and called ove…

Land of the free...home of the brave

Yes, America is the land of the free and I think I just realized what the part about the 'home of the brave' means.   Brave is what you have to be when the insurance company says you can't have the one and only treatment that will make you better.  Welcome to America and the crippled healthcare system. 

We got results of the CT Scans today and Shelbie has a severe virus and as long as she has no working immune system, she will have this virus.  The doctor said that the longer the virus hangs in there, the higher her risk for a bacterial infection or fungal infection so she is not out of the woods by a long shot.  We are celebrating the fact that it is not a funal infection!   We do have one other reason to celebrate...September 1, our insurance company changed their pre- auth policy on radiology. 

Remember a couple of posts ago, I said I had a nagging feeling not to wait to take her to the doctors?  Well turns out Wednesday was the last day to have radiology done without…