Sep 6, 20193 min read

Special Needs Community-- I See You

Mother joyfully looking down at her special needs son. Son has eyes closed and a peaceful look on face.

Some days I wish I had never stepped foot on this journey.

Some days I wish my eyes had never gazed upon this hidden road in all it’s winding ways.

Some days I wish I had never heard the term Dravet Syndrome or genetic testing.

Some days I think about what our life would be like had I not. If my feet had never been planted here—if my child had been healthy and my life had been seemingly “normal”.

And I wish for that.

A life unhindered by the anxieties of this journey.

A heart unburdened by the heaviness of this community.

Eyes that had never seen and ears that had never heard and a story that would not bear witness to unimaginable pain.

Some days I wish I had never stepped foot on this journey.

But then I think of you.

I think of you momma—as you carefully unload your child’s wheelchair from the back and maneuver his growing body from your minivan to his chair--his one chance at being mobile.

I think of you daddy—as you cover your face while the news is delivered in the ICU waiting room. News of results you never imagines you would receive.

I think of you—the one who just stays home, because the weight of leaving your home with your special needs child feels heavier than the idea of barricading yourself inside.

I think of you—the child who is hearing impaired, as you try to take in the world around you, but struggle to keep up.

I think of you—the baby who is born into suffering, and never knows a day of life without pain.

I think of the mother who grieves.

I think of the child who struggles.

I think of each person I have encountered, each story I have read.

I recognize that now I see you—while without this road I may never have.

Now I see you fighting with the doctors, or the insurance company, or the school system for the betterment of your child.

Now I see you wrestling with hard decisions, toting around the extra weight of this journey.

Now I see you-- coming undone, and losing yourself, and fighting for your own well-being on this road.

Now I see how the world is often unintentionally not for you.

I notice when a location is not handicap accessible. Or when there is no good location to change your aging disabled child. Or when someone says the “R” word.

Now I take note when someone makes a hateful comment or gives a dirty look out of ignorance.

And I wonder how my ignorance may have manifested if not for my own walk on this path.

Now I see all that I would have missed out on had I never been here—yes sometimes the hard things, but also the beautiful things. Also the good things.

Because of all that I have now seen and heard and experienced—I see you-- and my heart is for you.

And I don't wield that realization lightly.

So, no. I can't say I would ever wish for this road or this suffering-- but I can say I am grateful my eyes have been opened to the special needs community. Now I hope I can help to continue opening the eyes and ears of the world around us.