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.