Skip to main content

Resiliency

I've had to laugh...not really, figuratively, at the course the past three months have taken.  It's amazing to me just how resilient, yet fragile a spirit is.  Let's take a look back shall we?

November, Sam gets a good report from the physical exam at Pulmonology.  The doctor said, "Well, you are basically a picture of health, I'm sure we won't find any surprises on the pulmonary function testing."

The testing happens and a week later, pneumonia strikes for three weeks.  I don't worry too much because Sam has never had lung or breathing issues.

The week following his recovery, we discover that Sam does indeed have a serious lung diffusion problem to the tune of a 200% + increase in lung pressure!  Serious but it's probably just a hole in his heart...we'll fix it!

I was devastated...but then accepted that fact.

So, starts the journey with God.  It was made clear to me that if it wasn't a hole then it was far more serious.  I prayed and prayed and prayed for hole in my son's heart!  If you don't think that sounds foolish to ASK God for there to be a hole in your kid's heart!  To beg and plead for a hole!  Time passed, too much time but then it became evident that there was not a hole in Sam's heart.

Why can't there be a hole?  I had come to accept that!  To be okay with that. A hole...looking back, why did that possibility ever scare me?

Then, we find out that there is increased pressure in the right chamber and valve problems with at least two valves but theoretically, the aortic valve as well, since insufficiency showed up there too.

So, I go back to God...okay, I can deal with the fact that there probably isn't a hole but this can fixed right?  Just tell me this can be fixed.

Then we find out the problem is either bad plumbing that is dumping oxygenated blood into the wrong side of the heart or his heart is just plain and simple; dying due to disease and fibrosis.  Man, that supposed hole was really nothing to get my panties in a knot over...was it?

What I wouldn't give for a hole!
What I wouldn't give for some bad valves.
What I wouldn't give for some congenital plumbing issues!  

Funny how God eases us in to the problems...line upon line until we get to the place where we can cope but only because he started us out with smaller possibilities and we survived the thought of the smaller possibility so with the stretched and made stronger faith, it got a little worse, a little worse...til...

Well, that part of the story is yet to be written I guess.

There was a day back in December that I didn't think I could inhale one more particle of hurt over these lung and heart issues...but here I am, here WE are not only still breathing but accepting the uncertainty and moving on each day.  Albeit a little bruised and still exhausted but we are moving, progressing even, in our faith and our trust in God.  It's not easy and it's not fun but we are doing it.

Today, I called our Cardiologist because I still haven't gotten news on the time for the cardiac MRI in Utah.  The nurse was very apologetic because she faxed the orders and then forgot all about us.  She gave me the number to U of U so I could get it scheduled.

I did that this afternoon and low and behold...they won't accept Medicaid!  Ahh...I'm trying really hard to keep my perspective.  When the nurse on the other end apologized and told me it could take two more weeks to figure out the insurance issues and get approval, all I could say was, "It's okay, what's another two or three weeks to sort this out when your son could literally drop dead at any moment?" I did make it clear that I wasn't blaming her and she was very understanding and admitted that it is pretty ridiculous because it is a test that is kind of that last diagnostic test when things aren't looking so good.  Why do I have to be reminded of this?  In the end, I thanked her anyways for allowing me to live in my blissful state of denial for two more weeks.   We laughed awkwardly together until she said,  "Ahh...Well, you're welcome...I guess!"

(And another thing...while I'm on a rant...They didn't even have accurate insurance information to begin with!  A brand new doctor this year, brand new insurance, they send the insurance information to a brand new hospital we've never been to in a different State and they get the wrong information on insurance!  It wasn't even my old insurance...just plain wrong!  Tell me, what was the point to filling out 8 pages of personal information including insurance info, and a copy of the insurance card if you just make up your own crap about us?  Okay...rant done.)

So, ya...the conversation sounded sort of mean and maybe sarcastic...okay, really sarcastic but seriously...I think when dealing with issues of the HEART, waiting weeks and months for testing and surgery should be frowned upon but what do I know?

I'm just the single mom, working 50 hours a week as a designer and house cleaner, another 175 hours a week as a mom, 67.25 hours a week as a therapist so my kids don't go off the deep end and then another 47 hours trying to make three square meals a day, do 11th grade homework, clean my own house, pretend like I care, act like I'm happy, put aside my cares, keep my chin up, set the tone, and hang in there!
There just aren't enough hours in the day to fit this magnitude of worry in.

Ahhh...so we sit and wait and look back in awe of how far we've come even though we have so much farther to go.

Photobucket

Comments

Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.

"Clean."

Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…