Struggle Bus

2019 has not been the year I had hoped it would be, and we are almost halfway through already.  Illness and challenges and now, the anxiety of starting online college courses, have worn me down.

I am finding it challenging to turn my brain off at night recently, and I am up far too late, given my 6 am wake-up call every morning.  I am finding it challenging to get out of bed in the morning, because I am overwhelmed immediately with everything Kiran needs first thing.

And yet, he is the reason I get out of bed every morning.

It is not going to be an easy summer.  I know that already, and we are only one week in.  I am determined to get out and find our place in the world, but it is challenging.  We spent a good part of our morning at the inclusive park, and it took a lot out of me.  I was completely ignored by all the other moms/caregivers there, and Kiran got one single hello from a mom.  Two kids (siblings) did come over and ride on the merry-go-round with him and asked some questions and talked to us.  Other kids just stared, and I would say hello or ask if they wanted a turn on whatever it was we were doing.

I have gotten better at that – responding to the stares from the kids – but it is still hard for me that the adults all ignore us.  Or they call their kids away from us when they are attempting interaction.

I spend my days with my sweet, charming, non-verbal son…and it gets lonely.  And these experiences make it that much more isolating.  But I am going to grow.

Kiran and I – just the two of us – went down to the music at Valley Junction last night.  I pushed his chair while carrying my chair, and we made our way through the crowd okay.  We were ignored there too.  Not a single person interacted with us, even when Kiran got into the music and clapped and made his adorable (biased, maybe, but still) excited sounds.

I have spent most of my life feeling pretty invisible – and even finding comfort next to the wall – but this is a different kind of invisibility.  Because we are SO visible.  With his chair, with his noises, with his constant seeking of attention (because PEOPLE are his greatest motivator; he is the most social kid!)… We are so visible, I don’t understand how we still aren’t SEEN.

I feel another painful growth spurt coming on, this summer, for me.  So my butt will keep getting out of bed in the morning, and I will keep going.  Kiran deserves a great summer, and I’m going to give him the best I can….I just haven’t figured out how the hell I’m going to add school for me into that balance.


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