The Fear No Special Needs Parent Talks About….Ever!


With the sudden passing of our dear friends’ child; parents also to a child with Cerebral Palsy, I can’t help but be reminded of the fear we parents to children with medical fragility battle daily.  You might think it odd to have death on your mind everyday. For parents like us, it’s not something we dwell on, but it is always at the back of our minds.  We know all too well how the impact a virus, lung infection, cold, or some other bogus health factor could jeopardize our children’s fate. This doesn’t mean we go around like stress bags. We suffer in silence. In fact, we are probably the most upbeat, positive people you have ever met.

We have been taught a hard truth from the moment our child struggled for their first breath, the delicate nature of life. We have learned to value each day we have with them and battle the thought of ever having to live one moment without them. Each night I tuck my daughter into bed, I kiss her forehead and pray to God I get another day.

We celebrate the great days! Especially if those great days spread into a week, or better yet…months! We are parents who have walked the line so many times with our kids, we have learned to live life to the fullest with them, the best way we can; enjoying and appreciating  the simplest things like snuggles in bed or cuddled up with their favorite story. We live for today and always have hope for tomorrow. 


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