Being a human is so weird.

Tonight, Eric completely caught me off guard by throwing me a surprise graduation party. I was blown away by the people he thought to include, the people who took time out of a random Wednesday night during a busy season to come and show me love and celebrate my accomplishments.

I didn’t know speech language pathologists existed prior to Kiran. His journey, both with communication and feeding, has been long, difficult, triumphant, and disheartening. I can honestly say that I would have never gone back to school and pursued this career path had it not been for him. His journey inspired me and made me passionate about this field.

Along the way, somehow, I recaptured parts of my own identify, separate from motherhood. I made connections with peers in my cohort – lifelong friends who struggled and encouraged right alongside me.

This has not been an easy path.

I have to, first and foremost, thank Kiran. Buddy, who you are as a person has made me better. Your birth significantly separated my life into a Before and an After. I could write an entire book series on this, but people may just have to read my blog from the beginning. Truth: I wouldn’t have it any other way. I am so lucky to be your mama. I will advocate for you with every breath for the rest of my days, and you have inspired me to advocate for others like you that need to find their voice and their place in a world not made for them.

Eric. You have had me at my best and worst in the past several years on this academic journey. Through it all, you have stepped up and filled the gaps, supporting me in both logistics and emotions. Every time I questioned my abilities, my worth, my sanity…you were right there to remind me who I am and why I was on this path. I would have never completed this degree if you hadn’t been by my side doing whatever it took. Thank you for supporting me in all the ways.

My parents. Sometimes I wonder how I got so lucky. Just like parenthood has not been the journey I always dreamed of, your grandparenthood…well, it’s a lot. You always step up in the ways you can. Your love for Kiran – and for me – has been invaluable. I have relied on you to help with Kiran care regularly in the past year for sure, and you have always made the trip to Eau Claire with enthusiasm. Thank you for encouraging and celebrating me.

All of Kiran’s respite care providers: you have been invaluable. You have given me the time and space to study – or to escape caregiving duties. One in particular has been waiting for her shout-out, and I have to give it genuinely: Baylee, you have regularly been in our lives every week for almost three years. You have been an integral part to helping me maintain my sanity during grad school, and I can honestly say I wouldn’t have survived without your help and exceptional care of Kiran.

To my cohort: oof. We made it. I cannot count the many times we held each other up when we weren’t sure we could actually write another reflection, complete another project, find another placement…. When I wanted to throw my hands up and quit at one very poignant point, you all reeled me back in with your empathy and encouragement. We can do hard things. We did this, together.

My very last day of my clinical placements is tomorrow. I will walk away with the 400 hours I need for my licensing. I graduated a week and a half ago. I have a job lined up, the job I envisioned when I started this journey. I feel so incredibly blessed and so flabbergasted that I’m actually here.

Ultimately, to myself: You are a badass. You did this. The incredibly hard thing, juggling so much, letting go of so much, allowing others to step in and support. I have learned so much, grown so much, and ultimately changed the trajectory of my life. I did this.

I am a Master.

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.

…….

…………

…………………

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.

It’s my birthday today. Not a milestone one, just a regular marking of time passage.

Life has been rough. I have been struggling with persistent illness for so many weeks. I have also been feeling heavy about the state of the world as of late.

But.

My heart is so full today. I was blessed with my second grandbaby two days ago – I never knew if I’d get to be a “Lolly” and now both of Eric’s girls are mothers. I am so incredibly humbled and blessed to get a front row seat to watch them come into that role with such grace and fierce, true love. Their instincts are spot on, and I am so proud of both of them.

My circle is tightening, of my own accord, and I have been so thankful to spend today with those closest to me. I miss Kiran (dad weekend), but we will celebrate together Sunday night – and I’ve learned to embrace the caregiving breaks to be a whole person.

I don’t know that it will all be okay, but there are certainly huge portions of my life that are more than okay. Did I say my heart is full?

Overflowing. I am the luckiest in many ways.

I just finished the second week of my first full-time placement for my graduate program. It is the first time in Kiran’s nine years of life that I have been out of the house all day every day during the week. Needless to say, it has been an adjustment for our family (HUGE shout-out to Eric, who is now the main transportation to/from school every day except Wednesday – and shout-out to Nana, who has bravely taken on the school parking lot on Wednesdays)

I am so thankful that the schedule is such that I really only miss out on the last half hour at home in the mornings, and I am almost always home right as or right after Kiran gets home from school. It is easing us all into this new normal.

It has been a really interesting experience, throughout my graduate program, part-time placements, and now this full-time placement, experiencing the dichotomy of emotions that come with embracing another part of my personhood. On the one hand, I am really enjoying learning and diving in on sessions. I don’t mind not being the sole person handling all of Kiran’s care. On the other hand, I have some guilt around all of that, too. And I miss (almost) always being the one.

I am SO incredibly thankful I was able to be home as much as I was for the first nine years of Kiran’s life. Even two years ago, it would have been really difficult to swing being out of the house full-time. I am thankful for all the mountains and valleys, twists and turns life has taken our family on, because it has allowed us to be in a place for all this to even be feasible.

And I am so glad that I have chosen a career – and intend to pursue a position within that career – that will allow me to still be the primary caregiver for Kiran and be the one who is home with him during time off from school, including summers.

It is such an interesting experience, coming into myself in ways that make me feel more fully ME, even though it means everything about how our family works will be different. When it all comes down to it, my favorite title will always be Mom, but it is nice adding more titles and being more.

I had no idea I would feel this way.

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.