As a parent to a child with hydranencephaly, a neurological condition deemed terminal by the medical world regardless of our many attempts to ignore that prognosis, I have a keen sense of appreciation for all things amazing in this world. That is one of the hidden blessings we have been presented as a parent to a child with extra special needs, one that I appreciate the most. It saddens me to hear parents of typically developing children complain of their child's typical developmental milestones causing them grief. If only they knew how appreciative they should be of those milestones...
I realize that every individuals frustrations are frustrating to them, I only wish they could be thankful for their healthy child. But, I've been there and I've taken many things for granted... I'm certainly not mother of the year by any means. I get frustrated when I have to repeat myself a zillion times for a sock to be picked up, or angry when my daughter whines every time she opens her mouth. I also know that there are no parenting handbooks that are delivered with a baby, and when you're blessed with a child with many medical complexities... instead of the possibility of that handbook being found in the local Barnes and Noble, you have to write your own as you go. Some things in parenting, however, are simply common sense, or at least they should be!
A few examples:
~bathe your child, kids are messy... but messy and dirty are two different things
~dress your child appropriately... for example, it's 40 degrees outside so slap some socks on your little bugger and preferably some pants and a long-sleeved shirt. My 'lil man will kick his socks off a zillion times a day when not in AFOs, doesn't mean he doesn't need them! (& a diaper is not appropriate attire for a trip to the grocery store during the chilly month of November, or anytime for that matter)
~feed your child healthy foods, their diet should not be a compilation of left-over fast food and candy from Halloween, along with a tub of Kool-Aid or your watered down Mountain Dew from the fast food place last night.
and most importantly:
~touch your child... hold their hand, hold their bottle when they're too little to hold it themselves, hold them in your arms when they're crying and don't leave them crying without console in their stroller or car seat, give them a hug when they're sad, wipe away their tears when they cry, hold their hand when you walk, kiss their cute cheeks, show them you love them through touch.... gentle skin-to-skin contact through casual contact, massage, or cuddling is essential to creating a strong parent-child bond and nurturing your child in to a healthy adult.
Think it may not matter to your child? That a simple touch from a mother or father does not make any difference to the life of your child? It could make a lifetime of a difference, it could one day save a life... and in fact, it has:
and remember that there is never a moment when all hope should be lost... believe.