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Why You Shouldn't Feel Sorry for Our Family With Special Needs

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Kelli's daughters smiling
Kelli’s daughters.

Two years ago I had the honor of meeting one of the sweetest, most loving, cute, incredible, strong and down right most amazing human beings. Our meeting didn’t go quite as planned, but the second I saw her I knew she was special. She exuded pure light, as if her soul was shining from within.

She changed my life forever, for the better.

Her name is Ashlyn, and she’s my hero. She has special needs, and she is my daughter. Some people dream of meeting their favorite heroes, I was lucky enough to give birth to mine.

Ashlyn with her walker outside.

Ashlyn was born with not one, but two rare disorders, and lives with disabilities that will affect her everyday life, for the rest of her life.

But please, don’t be sorry.

It took us almost two years to get Ashlyn’s diagnoses. It was a long two years, with more tears and sleepless nights than most could bare. I would lay on the floor next to her crib at night and just cry. Why her? Why us? Why can no one give us any answers? But then the day finally came. After an extensive spinal, brain and skull CT/MRI, we finally had diagnoses. It was as if a weight was lifted off our shoulders. We finally had the answers we longed for. Having answers meant we could begin the care plan, treatments, therapies, appointments and interventions we needed to give her the best chance possible at living a “normal” life (Is there such thing?).

We immediately began updating family and friends with all the news we had received. I knew they would be elated and so happy we had answers, but what I wasn’t prepared for was the response we got.

“I’m sorry.” 

Now, I don’t believe these comments came from a negative or mean spirited place. I truly believe this was the response people had because they didn’t know what else to say. I mean, I get it.

Ashlyn near a tree outside smiling.

What do you say to someone who just found out their child has a condition that can’t be corrected by a procedure, and will live their entire life with a disability? Not “I’m sorry.”

My daughter is perfect, regardless of any diagnoses. 

She might not be on the same sports team as your child, and she might not be able to run and skip with kids her age, but that’s OK! She will excel in her own ways, and her father and I will be gushing with pride every step of the way.

She is silly, kind, fun and smart. She is like no one else I have ever or will ever meet.

She’s a miracle and everyday she surprises us and doctors with what she has and can accomplish.

She has the sweetest voice and the cutest giggles. Her crooked little grin can put a smile on any ones face. She has taught our family more in the last two years, than I learned in my entire 30 years of life before her. She is one of a kind, and she was given to us for a reason.

There is nothing for any one to be sorry about. She has blessed our lives beyond measure.

I am a special needs mom and I am proud of my daughter. Our family. My life.

So please, don’t pity us. Don’t be sorry. Just be supportive.

Our journey may be different than most, possibly more challenging, but we are up for the challenge, and we wouldn’t want it any other way.

Originally published: September 28, 2016
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