Additional Needs

The Outsider

Posted by Jodi Shenal on 7th September 2016 Additional Needs, Advice & Support, Disabilities

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Baby showers, wedding showers and even holiday dinners almost always leave me with a feeling of sadness and exclusion.

The stories shared of the perfect childbirth experiences, healthy beginnings and lives of normalcy turn me into someone visiting a foreign land or planet… with no translator.

I listened to a lady at a shower once explain how she went forward with having her tubes tied after childbirth, because her baby was, “normal”.

Thinking back on my own childbirth experience filled with unanswered questions, weeks in the NICU and scary diagnoses, I am desperately unable to relate.

The stories of the joys and wonders of breastfeeding are lost upon me.

Hearing how quickly babies transitioned to finger foods from purees leaves me speechless.

I shift in my seat uncomfortably when discussions shift to milestones and feats mastered by their little ones.

I have no place in the conversation, as we’ve yet to experience the first steps or the first word, after five years.

Achievements that I hope will come someday for my child, will be years later than all the other children being discussed.

Play dates and after-school sports are another topic that I escape from chatting about.

Smiling and nodding is all I can manage, all the while trying my hardest not to slither under the table.

No one else is bringing up social therapy groups or physical therapy sessions.

I hear no talk of bullies or the lack of adequate accommodations in school.

There is no mention of countless hours and dollars spent driving their children out of town for the best specialists.

If there was, I would participate and I would be the life of the party.

I would gracefully join in the conversation of motherhood being exhausting, if the others understood what it’s like to have a child with epilepsy….and endless nights filled with anxious worry.

I have two beautiful children. I could talk for hours about them and how wonderful they both are.

They complete me and they are my entire life; my absolute world.

Our life may be completely different and unfathomable to most, but it’s OUR life. It’s our NORMAL.

We celebrate great happiness and joy in our family, but we also shoulder much sadness. No one wants to sit and listen to a, “Negative Nellie”, at a party, so I shield most of the sad and difficult parts from others.

If I’m ever at a function and the discussion is geared towards children, I do genuinely want to listen to others’ experiences. On the inside, I have a whole lot to say.

I appreciate their stories, even when I can’t connect to them.

During these conversations, you’ll typically find me sitting quietly, and observing – feeling like the outsider.

The thing about special needs parents is that we have so much love and pride for our kids, our hearts would burst if we shared it all.

Sometimes, we sit and hold tightly to our experiences.

On the occasions when I do stumble across other parents in my shoes, I find relief in no longer being the outsider.