Monday, August 31, 2015

Longwood Gardens/Wheelchair Life

Friday night, Isaiah and I went on an impromptu trip to Longwood Gardens, it's acres of gardens, fountains, and more.  We have a membership that Isaiah's aunt and grandparents go for us for Isaiah's recent birthday.  The weather was just perfect for a night out and so was Isaiah...he had slept in on Friday, and had a long late nap in the afternoon.

We met friends and enjoyed the summer Nightscape program, full of colorful fountain shows and light programs along the paths.

We were there for about two and a half hours, most of which Isaiah spent in his chair with light up wheels....the little casters in the front light up if you go a certain speed, and man, they were a hit!  So many "woah, cool stroller!" (lol) "mom, I want one of those!" and "man kiddo, those lights/that wheelchair are/is so cool!" 

This was our first positive outing with the wheelchair that we've had in a while...

So, you know how I went on a break from blogging and I have yet to get back to my old schedule?  Well, that's because we had a handful of pretty negative experiences while out with the wheelchair, a few seriously painful ones within one weekend, and I let them bother me and make me angry.

I keep it it real here, but at the same time, I don't want to be whiney.  I don't want readers to feel like I am a giant complainy pants about our life because I am so grateful for our life.  I don't want Isaiah to look back on this blog and ever think I see him or aspects of his life as a burden.  Sometimes things are difficult and scary, but those things are small in comparison to the aspects of our life that are wonderful.

But I went through a few weeks of having trouble sharing anything, because my brain would go back to that weekend...where an adult woman pointed to Isaiah pushing himself in his wheelchair and saying "OH MY GAWD!! LOOK AT THAAAAAT!" while slamming her friend in the arm and pointing at Isaiah while shoving an ice cream cone into her face.... where then, not 20 minutes later, a little boy used the words scary and weird to describe Isaiah.

I think I wanted to share what happened with you, but I didn't because I was so bitter about it.  I went into a negative place.   I was unhappy with how I handled things (or didn't handle things) and I just didn't know what to say.  I felt I didn't know how to advocate for Isaiah, and I was so frustrated...

That?  She called my baby a "that".  The common sense part of my brain knew she was just surprised at seeing "a tiny baby" pushing a wheelchair, but the momma bear side of me fell apart and shook and was appalled at her reaction... and then it was like a one two punch when that little boy used such unkind words....yes, I know he was a child, but hearing those words to describe my son was painful. 

I know I can't control how the world responds to Isaiah, but I should know how to control my response to situations like these, and I was just so very disappointed in myself because I was just silent/angry (asking to speak to the little boy's mother...yup).

I am normally a happy person, who jokes and sarcastically responds to things...and in my dreams, when these situations arise, I'd reply that way, educating along the way as well, hoping to help the world accept different, everyone walking away feeling positive....and teaching Isaiah to respond similarly.

But when it involves Isaiah, I freeze!  I don't want to say the wrong thing.  I feel defensive and can't get past it.  I get hot in the face, my mind gets fuzzy, tears well up in my eyes, and geezlaweez!

So, that happened.  Maybe now that I shared it, I can get back to life as usual?  I know we are just beginning this journey and that I need to put my big girl panties on about it all....this is all such a new experience...and while we try to embrace things and live positively....sometimes it's all easier said than done.

We'll keep trying though; at some point, we're bound to get it right, right? It's very important to me that I figure out how to have a positive gut reaction, because I know Isaiah is listening to everything.

That was evident when he said "oh crap" when he dropped his pacifier on Saturday.  Yup. Time for everyone to stick with "ut oh" because that's much cuter coming out of my two year old's mouth... ;-)


  1. "oh crap" - that's hilarious Vicky - gave me my first chuckle of the morning!
    Stay strong - you are the best mommy Isaiah could ever have. :)

  2. Haha, oh crap! Hilarious.
    And You're so good. Thanks for sharing the tough times too. I had a really awkward conversation on an airplane with a lady that left me feeling the same way- frustrated and disappointed in her but also at myself for not handling it how I really wanted to. Anyway, I guess we're all works in progress. I think you're a fantastic mama bear:)