Today was imperfect. Eric had to finalize Christmas cheesecakes so was gone for (arguably) the busiest hour plus of the morning.

Christmas Eve service at our church brought its own challenges and reminded us that we have to fight for Kiran’s space in this world in every setting. Even when we think we shouldn’t have to.

But. Eric’s girls and their SOs and our sweet grandbaby were all with us tonight. We had a great dinner and honest conversation.

Eric and I just watched Die Hard. I had never seen it (and honestly- eh). But then I put on a stocking hat and we got in the hot tub.

And it doesn’t really feel like Christmas this year. But I think we are getting some things right anyway.

Merry Christmas

I love that Kiran always keeps us on our toes. His heart test results when we were here six months ago made us all think we’d be scheduling an intervention at this appointment.

But – his heart function has remained stable!

Everything we are seeing is expected with his previous surgery and current heart anatomy/function. We are just monitoring because when it gets to a certain level of functioning, it will be time to take action.

For so many reasons, I am beyond thankful that time is not now.

When it rains, it pours.

It seems my body has been yelling at me to rest – and when that didn’t work, it has forced me to do so.

And to ask for help. Which is probably the one thing I am the worst at.

First, it was my foot. Talk about experiencing deep empathy for those who regularly have mobility challenges. When you feel you have a million things to do and you can’t just zoom around and get them done as usual, it’s highly frustrating.

The last few days, it’s been illness, because of course it has. This is the rhythm of my life – wrap up a stressful semester, start to let down and relax….and let in all the terrible germs.

In and around all of this, I have managed to wrap up my semester, PASS my oral comps (which shows I have learned some things throughout this grad school process), and have some fun with friends and family.

And, because life never slows down, Kiran has a big appointment day tomorrow in Iowa City. We get to leave at the butt crack of dawn, and daddy Eric is driving us this time. I am bracing myself but know I will never be prepared. Because it’s his heart – and he holds mine.

I am getting tired of all the academic writing I am doing today – working feverishly on competency written prompts in preparation of oral competencies – so I thought I’d come do some vent writing as a break.

The metro had its first snow that stuck overnight. Just a dusting, really, not any significant amount. Very pretty if you have the ability to just hide inside and not go anywhere.

If only.

School drop-off was a frustrating experience that brought many exasperated huffs to my breath and stinging tears to my eyes. Someone explain to me why a parent would choose to park in the middle of the parking lot aisle, blocking both accessible (handicapped – I am intentional with the language I use but want everyone to know what I’m talking about) spots? And then, despite NEVER wanting to be confrontational even in the slightest bit, after someone pulls up behind you, honks their horn, gestures they need to turn in, and points to their placard giving them the legal right to park in the spot you’re blocking…nothing happens. They just sit there.

I went around. Thankfully, going to the next aisle over, there was an accessible spot available (not always the case). But come on – don’t block these parking spots and pretend to be oblivious to what’s going on around you. If it was Eric dropping off, he would have gotten out and approached them. I am still working to develop that backbone.

I took pictures today of the snow situation in the accessible spots. Every year, the snow removal crew chooses to pile the snow up on one side of the van accessible parking spots, making the space smaller and rendering it essentially unusable for us now that our van has been modified. It wasn’t an issue today, but I don’t want it to be an issue in the future. Sometimes I come and there is only one accessible spot left, and if that is the case, I need the full space to be able to let down the side ramp and wheel Kiran out of the vehicle. Thankfully, the principal (who ADORES Kiran, which helps) took my email seriously and had a conversation with the custodial supervisor and assures me they will be sure to have these spaces fully cleared.

So two things right away – I’m on edge, right? This is enough mild confrontation and reluctant advocacy work for someone like me who is so uncomfortable with all of it –

I’m going to start ramming your children with Kiran’s wheelchair. When it is cold, I wheel Kiran into the school building to wait for his associate when all the other kids are allowed to go in (after the bell rings). I probably had one dozen kids come up behind/beside us and cut us off as we were trying to get in the door today. As if Kiran is invisible, which is impossible, because we are like a freaking train with all his stuff, his wheelchair, and his mounted eye gaze device that sits well in front of him. I was frustrated with the educator holding the door because I feel like she should have been the one to direct the students to not cut him off. I didn’t have it in me nor did I know the appropriate way to handle the situation. I won’t really start running into your kids, but I won’t lie and say there wasn’t a part of me today that wanted to.

These are the extra jobs I get as Kiran’s mom. Reluctant advocate, who must make people aware of our family’s accessibility needs and help ensure we are VISIBLE to others in the community. I’ll keep doing it – but anybody reading this, feel free to educate and advocate in your little slice of the world.