Our mother’s day getaway to Kansas City was a success!  I often get bogged down with logistics and anxieties – and it IS quite the process to pack up everything Kiran requires for feeding, mobility, sleeping, etc – but things really went very well.

My confidence grew.

It definitely helped to have an extra set of hands.  Although I know I *could* take Kiran away for a weekend by myself, I also know it’s nice to not *have* to always be the one lifting the wheelchair in and out of the vehicle, and it’s nice to know I can shower in the hotel room with a pair of eyes on Kiran.  And – let’s be honest – I love not having to drive/navigate a city I don’t know well by myself too!

Some things I learned:

Sleeping in a hotel room is doable.  Kiran had a queen bed all to himself, with pillows strategically stacked around him to keep him safe.  He isn’t a big mover and shaker, so thankfully, at least at this point, I don’t have serious concerns about him falling out of bed.  Friday night, he definitely thought it was cool we were right there with him – every so often, his head would pop up as if to say “Hey, guys, what’s going on” – but by Saturday night, he was so sleepy, he slept normally.

I have never been a person who unpacks fully for a weekend, but with Kiran, it’s necessary to take the time to unpack and get things set up.  It makes life a lot easier to create a diaper changing station in the room, have his clothes unpacked, have his nighttime brace easily accessible, have his syringes/food all in the fridge (obviously)…

Grief is going to well up inside me at random moments – even really good moments.  While we were in line waiting to go into the children’s theater for the show, Beat Bugs – the main event of our trip – all the extra steps we are required to take for him to enjoy a show caused the tears to come.  I hate crying in front of people, and I especially hate crying in public.  But sometimes, the tears just happen, whether I want them to or not.  I was thankfully able to keep them in my eyeballs, but I got emotional.  We have to call ahead to the box office and make sure we have accessible seating, we have to check in when we arrive, and we have to be led to a very noticeable special section.  And for me, that sometimes just feels like a lot.  I am still getting used to the fact Kiran will be noticed everywhere we go.  Gone are the days of Wallflower Holly.  It is one of the biggest daily challenges for me, personally.  I am growing, but sometimes, I still grieve the “normal” I envisioned.

Along with this – my anxieties and desire to just blend in and not cause anyone extra work or discomfort – I learned that it IS doable to take Kiran to the types of restaurants I like to visit.  I am talking the hole-in-the-wall, small spaces restaurants.  I am very intentional about not being apologetic or asking – I will say something like “Where can I put this chair so I can pull him up to the table?” – because people need to understand (*I* need to understand and believe and advocate for) Kiran is allowed to take up space in the world.  This is hard for me.  Not because I don’t believe it, but because it takes a lot out of me, emotionally and mentally, to always feel uncomfortable in these situations.

It goes along with everything I want for Kiran in life.  In some ways, especially for me, it would be easier to just hide out at home.  It would require less planning, less effort, less anxiety-inducing situations, less accessibility research, less….

But I want Kiran to live LIFE.  I want him to have these experiences.  I love that I am able to share with him my love of live theater.  And music.  And fun restaurants (At one place, he got to taste the sausage gravy and got to have a fancy juice in his tube with me).

Overall, I am recognizing the areas in which I struggle, but I am also taking time to recognize I AM growing.  And I know, for Kiran, I will keep doing the work.  Every day.

We had a great trip.  I am still recovering from the exhaustion.  But I think Mother’s Day weekends away might become an annual tradition for us.  It was so worth it.