Y is for whY?


A special thanks to Terri Mauro for allowing me to link to her inspirational quotes and notes for Special Parents. Do you know a parent who is struggling? Print, Email, or Facebook one of these to them today! More of them can be found here: http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/

Y-Me? I have asked this so many times over the last 3 years I have lost count… I have pleaded with God and myself as I have tried to make sense of all that has happened in the past few years.

Y-me, Y was I given a little girl, who from the early beginnings, cried and cried and cried some more?

Y were my concerns and fears about my baby, dismissed by so many doctors I trusted?

Y was I told it was just colic and it would pass, then reflux, then food allergies, then possibly mito?

Y did she get worse with every new medication we tried that was supposed to be helping her get better?
Y did the very food that was meant to nourish her, cause her more pain?
Y did she never sleep, when infants need more sleep than anyone?
Y did when I coo and giggle in her sweet face, Y did she often seem to not “be there” , not cooing or smiling back at me, but instead looking right through me with a “blank” expression?
Y did as the day progressed, things became increasingly worse, until I would be in tears myself at 4 am when we were on our 16th hour of her crying ?

Y did having diarrhea from the start and for nearly 20 months only concern me, and not so many others?

Y did she degrade and react every time I ate out and then nursed her, or when I went out with a fresh coat of hairspray on my head?

Y did the first time we gave her cow’s milk at 15 mo, did she incessantly try to bang her head on any hard surface including the tile floor?

Y did after only being mistakenly fed 6-7 goldfish crackers, Y did she regress and not utter a sound for 2 weeks, til her body “rebooted” and she began to babble again?

Y did she do so well on our visit to PA where we couldn’t find her almond milk to drink so substituted rice milk, but then returning to TX and almond milk, things got worse for her?

Y did I find her inconsolably screaming in my closet moments after removing my nail polish in the adjoining bathroom?

Y did one doctor see something completely different from another doctor on the endoscopy results when they reviewed them?

Y did the healthier we tried to feed our daughter (more fruits and vegetables) the sicker she got and the more strange things neurologically happened?

Y  when we started to remove a group of foods containing salicylates, she started to get better and began to TALK?

Y can she repeatedly have weeks of good days when we keep her on this low salicylate diet, but when I run out of sugar one day and substitute honey, Y does a 4 week reaction ensue?

Y do one minute we have a sweet loving girl full of hugs and kisses and in a moment Y is she “gone” screeching and squealing, hitting and biting, slapping and screaming, defiant, confused, and delirious?

Y does giving her food seem to snap her back to that sweet little one, sometimes?

Y does a 4 hour nap seem to snap her back to that sweet little one, sometimes?

Y are our days and weeks and months defined by foods and the reactions they cause in my sweet little girl’s body?

Y does IV hydration have an immediate effect on bringing back my little one’s appetite (that she had lost for nearly a week)?

Y, Y, Y , whY… I could go on and on with all the Y’s I have asked and pondered and tried to answer…

But I will stop, because over the past year I have come to the realization of:


With each of those Y’s we have been given a clue, a piece of the puzzle, God has led us to more answers than we ever had on day one of her life. And though we do not have the whole picture, all the pieces, or all the answers… I have come to realize I don’t need them all. We are on this journey for a reason and have come to appreciate the smiles and the giggles, SO MUCH MORE.

I know I cannot magically “fix” what ails my daughter’s body, but I also know as her mom, I will never stop trying to figure things out, in hopes, that it makes life just a wee bit better for her, and our entire family.  And sharing those “discoveries” with other moms on similar journeys who are asking Y , too… is my attempt to “pay it forward” if only just my 2 cents.

About Empowered Advocacy

www.EmpoweredAdvocacy.com Pediatric Patient Advocate
This entry was posted in ABC's. Bookmark the permalink.

5 Responses to Y is for whY?

  1. Diane says:

    Y-Don’t medical schools require their students to read our blogs! 🙂 Great way to spell it out Kristi! You clearly identify the most frustrating part of being a parent to a child with unique needs- our kids take being individuals with individual needs to a whole new level, there are no Dr. Spock books for our kids- though I wish there were.

  2. Elizabeth says:

    I love the note of encouragement- so true! You have been through so much- praying 2012 is a year of answers and discoveries of more things that help your sweet girl. Thank you for being such an inspiration!

  3. Debbie says:

    Y? Because God knew You would do something about it!! Thankfully You are! If not for the Y in You so many would be still be on their own island of depair. YOU make a difference!

  4. Melanie says:

    You are such an amazing mom, friend, leader … thanks for leading the way!! Big Boy B & Lady A are blessed to have a mom ask all the tough Y questions…. keep asking them….you’ve been through so much & you’ve done so much… thank u for all u do…

  5. Suzanne says:

    Thank you for your willingness to share your story! Your “why” list sounds a lot like what goes on in my head as we try to figure out “why” our 3 yr old is out of control. I have just come across salicylate sensitivity and started eliminating two days ago. I’m praying it may be our answer!

What do you Think? Comment here!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s