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Special Needs Parenting: Time Stands Still Because You Have Been There

Special Needs Parenting: Time Stands Still Because You Have Been There

They are at the same crossroad you were at years ago; fighting for their child’s life and clinging to the hopes of a miracle.  You know their journey is just beginning, where you have traveled yours for sometime now.  Yet it all propels you back in time, as if you are reliving those moments all over again.

In an instant you can smell that distinct NICU hospital scent, you have phantom pain from the emergency c-section that you cannot remember due to general anesthesia, you feel the incredible pain and joy of touching your child for the first time and hearing the words “revived, seizures, brain cooling.”  Heavy denial surrounds you as you fail to realize that western medicine cannot heal the human brain.

Time stands still because you’ve been there.

And now another set of parents are following in your painful footsteps.  You wish to rescue them – even though you have never met them in person, and only know of them via Internet connections and special needs social media groups.

They may have sought you out intentionally seeking a story of survival… but not just survival but a story of complete healing and recovery.

You struggle to find a way to gently tell them about your child’s severe disability.  They long to hear the words “everything will be just fine.”  But you know the odds are not in their favor.

You itch to tell them in a different way it will be okay, just not in the way they wish it to be - to show them that life on the side of special needs parenting is of course heartbreaking, but incredibly beautiful and filled with unspeakable joy for being able to experience the gift of your child’s life.

Afraid of scaring them, you simply confirm what they need to hear in the moment, which is it will be just fine to get them through the next hour, day or weeks ahead.

These parents are fragile and worn raw from their tears, pain and heartache.

You’ll wish to take it all away from them, as someone wished they could have done the same for you.

You know in your heart they’ll likely join the club no one wants to belong to… that special needs child club.

A world filled with life-long disabilities, hardships, and struggles.  A balance of joys, bittersweet memories, and the intense and immeasurable love for a child that is dependent upon you for a lifetime.

Inevitably you will cry tears for another couple’s child because the start of their journey mirrors your own.  And only another person having lived those moments can truly feel and understand the gravity of the experience.

You hope that they keep in touch as they move forward on their journey, because you know they will need more support than the world will give them.

 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Stacy Warden

Meet Our Blogger

Author of Noah's Miracle blog. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own.

View Stacy’s Profile

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