Thursday, May 22, 2014

Seeking "My Person" On the Special Needs Journey

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"You are My Person," is a term coined by the ever popular show Grey's Anatomy.   That person in your life who through the thick of complicated, tragic, joyful, challenging, celebratory and everything in between is there for you.   Not many "My Person" in the land of special needs.  The job description is harder to fill.

You'd have to be able to celebrate by jumping up and down because my child was able to consume a cheeto for the first time at age 5.   You'd be so happy you'd bring me a cake that said congratulations and we'd all celebrate how proud we were. 

 You'd never dream of rubbing salt in my wounds by comparing my child against yours and understanding just the gift of life alone was a milestone.

We'd play on the same team every single day.  You'd never think twice about not calling me up to invite us to the zoo, to a park to play, our out to shop for new clothing for our children.  You'd search out all the best stuff, like sensory friendly clothing and toys and share with me your great finds.

You'd be there to help me do things you didn't like to do, like change soiled sheets, assist with helping toilet a severely disabled child,  or helping me lift a heavy wheelchair into the back of my van.   You'd always recognize that sometimes you just need a hand.

No matter how busy you were in your day,  you'd remember how important I was to check in with me at least once a day.   Just to say, you were on my mind.   And we'd exchange small chitchat about the challenges and triumphs we both shared in our lives that day.

When I got bad news, it would mean you'd come over and just sit with me, even in silence while I tried to work things out in my head.   Knowing that at least someone cared enough so I could gather myself to move forward the next day, stronger and better than the day before.  

You'd never get mad at me if I simply needed a moment to complain about all the hard things about special needs parenting.   Never holding it against me if I just needed someone to hear me vent, scream and cry.

You'd go to bat for me whenever you could.   Offering to help me fight insurance denials, call government agencies, or lobby for positive change that would impact my child's life. 

When I had brilliant moments of something I thought would benefit my child's life you would never tell me how impossible or stupid my ideas were and would help me find a way to make them a reality.

You'd be honest and tell me exactly what I needed to hear.  Even if that was that I needed to quit worrying so much.

I'd share lots of concerns about my child's future.  The biggest of which who was going to take care of him if something ever happened to me or when I got old and died.  You'd be the first person to say don't worry, I'll step in for you and assume that role of caregiver if anything happened to you.

You would understand and highly respect how hard each day was and would never put me down for having to prioritize caring for my child over a coffee date.  You'd be so gracious to pick up coffee for the both of us and sit at my kitchen table while I spoon fed my child a meal. 

You'd be able to read my body language and expressions that you'd never have to ask what was wrong.  You'd just know. 

On my worst days, you'd be there to hold me up.   You would come with unlimited hugs and words of comfort.   You'd hold my hand and we'd just sit on the couch and talk through it all.  You would be the best listener. 

You'd dance with me, help make me brave, and we'd share daily affirmations.

You'd be so committed to being "My Person" that I'd never have to worry about you leaving when things got too tough or emotional to handle and the special needs journey became overwhelming to our friendship.

I don't know if I'll ever find "My Person" on the special needs journey.  But I'd like to believe that person exists for all of us.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.