“You need to be realistic about the limitations your child will have.”

“Your child isn’t meeting milestones; you need to be prepared for the reality of his condition long term.”

“There is no cure for your child’s condition. Your family needs to be realistic and prepare for the inevitable.”

“Therapies and treatments have been exhausted.  Don’t be unrealistic regarding what your child’s future will hold.”

Raise your hand if these words have been spoken in your presence (who wants to raise both hands with me??).  Now stand up if you have rejected these words and chose to live beyond that “reality”!

While we must take time to process our child’s diagnosis and grieve the loss of plans we may have dreamt for our child, being “realistic” about our special kiddos will not produce a life lived to its fullest.

20 years of traveling down this road with my child; navigating difficult turns, life threatening diagnosis, failed treatments, bleak prognosis, and thick mud resulting in spinning wheels with no forward motion.  Trudging through, thankful for the paved stretches along the way that provided a brief smooth ride. Peering through the vast windshield of experience, i have seen how vital it is to be UNREALISTIC.  To see beyond the projections, limitations and abilities of my child. To set navigation for where we want to go and continue traveling no matter what distractions jump out onto the road or how often our car breaks down.  i have pushed her even when it’s hard and success appeared to be beyond her reach.  i’m sure over the years, she has grown weary of these words escaping my lips “just because it’s hard, doesn’t mean you don’t have to do it.” i never want her to see challenges as excuses to not press past expectation or what she perceives to be “reality”.  In the same manner, i must not lose focus of the hope that lies beyond everyone else’s reality for my child. 

So NO, i will NOT be realistic about my child’s condition.  i will help others appreciate her unique abilities.  i will push her to excel and provide her the tools to do so. i will fight for the life of my child, seek alternative treatments and doctors outside of our region who can provide insight. i refuse to accept a life paused because of a medical condition, prolonged hospital stays or endless challenges.  i will continue to petition my Creator on her behalf for healing; focus on the beauty among the ashes and be thankful for moments of joy sprinkled throughout the hard days.  Defeat will not be an option and my reality will reside just ahead, around the curve of my limited sight.   For it is in the unrealistic where hope lives; and that, my friend, is road i can continue traveling.