Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Sunday, September 4, 2011

Don't Quit

I have so much to update on here, so much has been happening over the past month:
  • Scope results came back
  • Considering TPN
  • Functional Medicine
  • Decision to hold on TPN
  • New Probiotic
  • Multi layered treatment plan?
  • Back to CHOP?
  • Heat rash?
  • Progressive weakness and worsening symptoms?
  • Scurvy and a PICC line
  • CHOP appointments
  • The Plan now?
  • The FPIES Foundation!
So, I have a lot to of posts to fill in on here but as we look at the upcoming weeks- it looks like it will require a lot of hospital time.   I really do not like that we are back at this place, it seems like we were in this same place a year ago.  Will it be different this time?  Will we get a tiny menu?  We will be able to decipher his symptoms so we can help him?  How are we going to be able to cope as a family with being in the hospital for such an unknown timeframe. 

I need to get things ready, clean the house, grocery shop, school shopping, family time, so much to do.   As I am doing some laundry, putting a load of clothes in- a card falls down from the shelf above the washing machine.   It is titled "Don't Quit".    It is a holy card, I don't even ever remember seeing it before although I am familiar with the title.   Little things like this are all it takes for me, a little sign to reassure we are being taken care of....our needs will be met.    There are so many difficult things about this diagnosis but there is plenty to be grateful for.  Don't Quit.   A fitting and timely reminder.

When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit --
Rest if you must, but don't quit.

Life is strange with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow --
You may succeed with another blow.

Often the goal is nearer than
It seems to a fair and faltering man,
Often the struggler has given up
When he might have captured the victor's cup,
And he learned too late when night came down,
How close he was to the golden crown.

Success is failure turned inside out --
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems afar,
So stick to the fight when you're hardest hit, --
It's when things seem worst that you mustn't quit.

-- Author Unknown --

1 comment:

  1. Isaiah 41:10

    Amplified Bible

    Fear not [there is nothing to fear], for I am with you; do not look around you in terror and be dismayed, for I am your God. I will strengthen and harden you to difficulties, yes, I will help you; yes, I will hold you up and retain you with My [victorious] right hand of rightness and justice.

    PA Nichole