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."

Monday, August 20, 2012

Lazy Days of Summer



Summer has kept us busy, just having all 4 boys at home is busy enough!  We are well into the lazy days of summer and enjoying just spending time at home. 

First day of school is Sept.4th, our Kindergartner has Meet The Teacher and then starts on Sept.6th- Kindergarten this year for him!  BIG step! He's excited, we're excited, he needs this in his routine, he needs the challenges and the routine base.  My mommy guilt cries for how his childhood has been molded by his brothers chronic health needs.  I know it has benefited him as well- he is empathetic and independent (sometimes TOO independent!) in ways his brothers weren't at this age but the 1:1 time I got with the two older boys just hasn't been there for him.   This is where I need to remember that everything that has been given to us, including Sam's challenging days, are God's Will and repeat to myself..."Thy will be done" many times a day; because I do simply trust in that -- even if my human nature takes over and my guilt or impatience creep in, trying to understand what role I need to take....which parts does He want me to do? Which parts do I leave to Him?  Which parts do I ask for help with?  These are my daily struggles....where my Faith meets my human nature.  

One morning last week, I woke up (as usual) to the sound of Little Man crying "Mommy, I need you"- he doesn't transition well and waking up from a nap or night is one of those times when he needs help with the transitioning; so if I don't wake before him- I am woken to crying out for me.  This one particular morning, I woke up still half in a dream...tried to pull myself out but it was "sticking" hard....I had been dreaming about Our Lady of Perpetual Help and I couldn't "shake" it...it just kept repeating in my head.  If you are familiar with the image of Our Lady of Perpetual Help (or look it up), you will see that it is the image of Our Lady holding the baby Jesus.  I have the image, in a frame....it was my Grandmothers.  

The prayer is about needing help and remembering to ask Our Lady, the mother of Jesus, for this help- as she will advocate to Jesus for us.  So, of course we continue to pray to Jesus for assistance but we also ask his Mother to take our cares and needs to Jesus for us by praying to Mary.   We honor Jesus in this way, respecting his Mother.  The prayer and image are here: http://www.ourcatholicprayers.com/novena-to-our-lady-of-perpetual-help.html

It is again a reminder for me to ask for help, even if I don't know what I'm asking for (that is my downfall, I have a hard time asking for help and even harder time if I don't know exactly what I need).   

Maybe that is why I haven't been able to write an update....I have a hard time discussing (especially with those unfamiliar with the day in and day out of this invisible illness) because there are so many 'hidden' challenges- things that we as a family or Sam goes through that isn't "normal" but isn't something anyone can help with either.  His body wont' accept food as nourishment and yet he needs nourishment to live and thrive...that's the bottom line of this viscous roller coaster ride we are on.  And making the right choices for that balance is my constant, constant thoughts.  Food that makes him sick vs. avoiding foods with nutrients his body needs. Teeter-totter, tilt-o-whirl, roller coaster ride. 

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