Here is something I have been thinking a lot about lately: I wish we could all sit together.

Although almost everywhere we go – movie theaters, church, baseball games, concerts, etc – has wheelchair seats available (which is amazing; don’t get me wrong!), they often have ONE companion seat next to the wheelchair seat.

It all started with our Christmas eve service fiasco this year. Even if we were able to get a wheelchair spot, we wouldn’t have been able to all sit together as a family – and there were only five of us in attendance. And then, when I had to order tickets to my upcoming graduation ceremony, I had to send an extra email to ensure we could have a wheelchair seat…and guess what? Eric will get to sit next to Kiran, but my parents will have to sit elsewhere, because the wheelchair spaces are reserved with only one companion seat.

So for these big, and sometimes monumental, events, when it’s so important and valuable to experience it together as a family, ours is disjointed. The logistics of our situation make it necessary for us to not be together.

And it sucks.

I don’t have a solution. Honestly, I don’t even have super great ideas for a solution in most settings (Other than, for the big church services, they could dedicate the entire wheelchair row to families of wheelchair users without much difficulty for others), but it does suck. Not only is it typically an extra step to figure out accessible seating in most situations (an extra email, a phone call that could’ve been an online reservation, an earlier arrival time, etc), it often means we have to give up togetherness.

Kiran has a new case manager for the health and disability Medicaid waiver he is on. This is someone we meet with monthly (one month is a phone call; next month is in-person meeting; so-on) to check in, make sure the services we are receiving are working out for us, and make any necessary changes to his care plan. Friday afternoon was the first in-person meeting with this new case manager.

I don’t like her.

While it is true that I really liked Kiran’s former case manager and as a general rule don’t deal well with change, it has nothing to do with that. There were three moments in our conversation that let me know two things about her:

1. She doesn’t value disabled people.
2. She feels sorry for me.

Why in the world this is her profession is beyond me.

So – what happened?

She asked me if Kiran was my only child. When I said yes, this woman responded with “awwwwww” with a very sad intonation, as if that was a tragic thing. I was so shocked by that unprofessional response, I just shook it off. After all, it’s not the first time someone has felt sorry for me. So many people just don’t get it.

Then, I followed up with my usual (and I’m paraphrasing here): “Actually, my fiance has two grown daughters that I also claim as my own, but they were older when we got together, so it’s weird to think of myself as a stepmom”…I started to try to share with her about my grandkids, but she was too busy interrupting me to tell me what a WONDERFUL man Eric must be. “Most men wouldn’t be willing to take on a child with special needs…..” She went on for a bit, and I don’t remember what exactly was said, only that the word “burden” was used.

Guys. I know I talk about how difficult caregiving can be. I know that sometimes I throw myself pity parties. I know. But let me be clear if I haven’t been before: Kiran is NOT, nor will he ever be, a BURDEN.

Of course, I shook this off too. Holy cow, so many people like to tell me how amazing Eric is for being with us, because of Kiran. Eric is amazing, but he will be the first to tell you that Kiran provides him with so much joy and love, and he is actually the lucky one in all this.

Neither of these was professional or appropriate for the context we were in. I was willing to shake them off, give her the benefit of the doubt, move on.

But then, with my son sitting next to me in his wheelchair with me holding his hand, this woman had the audacity to try to commiserate with me about her daughter who was born premature. She told me how they spent months in the NICU, how scared she was at that time, how the doctors were saying her daughter would “have trouble walking, have trouble eating”…and how she didn’t have trouble with any of it! And how GRATEFUL she is for her daughter’s health.

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If I would have had this meeting a few years ago, I would have left a sobbing mess. Thank God I have had nine years on this grief rollercoaster and have a solid sense of just how valuable and amazing Kiran is. Thank God that though I always hold fear in some capacity, I am currently not in a state of life where I am fearing some major health concern with Kiran.

Can you imagine if I was a brand new mother just learning of the specifics of my child’s diagnosis, and this had happened? Or if I was currently in the middle of fighting with insurance for my child’s very first wheelchair, deep in mourning that my child still isn’t able to walk?

I wish I was a person that didn’t shy away so strongly from uncomfortable, confrontational encounters. I have gone over and over and over what I wish I would have said to her. But I just did my awkward thing, completely in shock, and wrapped up the meeting as quickly as possible.

I am not contacting her manager because I want to get her in trouble. I am sure that it was her way of attempting to form a connection, but it was so completely misguided. Depending on how the conversation with the manager goes, I will definitely consider writing to her directly to express my feelings and concerns with her interpersonal skills.

Because I want to protect the other families who may be in a more vulnerable place than I am right now. Because we all deserve to work with people who value our children.