Sometimes I feel that people are drawn to the dramatic aspects of having a child with special needs, but forget the much needed celebrations of day to day.
For example: the diagnosis. Attention is showered on the new baby, some overly positive to compensate for the fact that said congratulator has no clue really what to say, some negative and audaciously full of pity because, once again, no idea how to respond.
Each positive word, no matter how awkwardly worded, is appreciated like the balm that it is to the broken mother's heart.
Pictures are posted- comment after comment pours in about the cuteness of the "different" baby, in hopes of helping the parent still feel as though their baby is loved.
People are encouraging. Positive words are exchanged.
The special needs parent feels uplifted, chosen, thankful.
If the child has perhaps a leukemia scare or a surgery, such outpouring is once again evident. And again, balm-like in its therapeutic powers.
However, inevitably circumstances even out into the humdrum of the day to day.
Comments aren't as plentiful. Observers forget about the drama and return to their own lives, happy that they can turn off their computer and be transported back to the life of parenting normal children.
The day to day is where it can really get you.
Wondering what the function level of your child will be-feeling guilty if you choose another activity over extra therapy time and feeling that perhaps might be the difference between your child growing into a capable adult or dependent on the world for every slightest need.
The day to day leaves you full of tense wonderment for your child's future.
Yes, of course, you accept the diagnosis. That's all part of the drama.
But on those boring days where nothing exciting happens, that's when you're left to doubt your parenting job and drown in the many emotional traps of love versus fear.
You find yourself celebrating even the smallest show of cognitive activity-such as naughtiness. Surely that is your child's way of expressing and exploring the world with the same curious mind of any normal toddler.
Each naughty activity becomes an unbelievably exciting display of your child's genius as you silently encourage different acts of rebellion just so you can once again see them making a decisive choice on their very own, showcasing a true mastermind of intellect hidden behind the almond shaped eyes and distinctively carved chin.
Small shuffling that turns into long paths of furniture cruising leaves you feeling as though your baby will be set to run a full fledged marathon in a couple of months....and you find yourself beaming with ardent pride at the mere thought of your child's chubby leg engaging in the deliberate high step with brow earnestly knit in concentration as each and every muscle works overtime just to accomplish the simplest of motions.
If a small hand accidentally forms a sign that means "eat" that you have been rehearsing for months and months, you shower food down upon your unsuspecting child just in case they were actually asking for a snack, and rejoice in the possible progress regarding their sign language skills and then prepare yourself to eagerly wait weeks more to see the same sign repeated.
The day to day. The smallest of accomplishments. That's where the true drama lies.
And that's where the parent of the special needs child needs the most support, encouragement and love.
Things that are easy for your child to do...are incredibly difficult for mine. Each act of physical prowess or mental understanding that your child could do months ago, mine is just beginning to slowly explore
and I celebrate, post and brag about the slightest expression
of my daughter's true brilliance
hidden to the casual observer, but revealed to me, bit by bit
through the day to day,
occurring just as I'm about to give in to the fear.
I write this to thank you for celebrating with me and for your many kind comments for the day to day activities that I elaborate on in painful detail at times here on my blog.
Thank you. I appreciate it all more than you know.