Balance.

I am not going to lie; I had to look back at my New Year’s post for 2023 to even remember the word I chose. Luckily for me, vulnerability is something I seem to get better at all the time, so I am going to call it a win. A growth. Yay for me.

2022 was authenticity. Both of those go hand-in-hand, really, which is what I wrote about last year. But something I have already been working on these past few months is going to be my focus for the coming year.

Balance.

It is going to embed itself into several areas of my life. The most important one – the one I have already been focused on – has to do with actually finding time to take care of myself in the midst of all of my responsibilities. I am wanting it to grow into areas like exercise and nutrition – the ways I find it hardest to take care of myself, after a regular shower schedule (do you KNOW how much work taking a shower can be, when you’re overwhelmed and stressed and perpetually have a to-do list three miles long!?!).

I also want it, eventually, to grow into relationships. Balance. Putting in the effort with those who are putting in the effort with me. I’ll be honest – I know I haven’t been great at relationships lately, in all forms. But I love my people, and I want relationships to grow and be more – real – and evident in my life. It is hard when I feel like every day, I am empty and have nothing more to give. But I think by finding a better balance – a better footing – I will have more. It is, perhaps, my greatest hope for the coming year: To be able to give more energy and take in more love from those around me.

Cheers to the new year.

There has been an undercurrent of grief in my life lately. Though I have had over eight years to practice, I haven’t quite figured out how to reconcile the complicated emotions that come with being Kiran’s mom.

I find myself envious of Eric’s ability to choose his role in Kiran’s life. I am sure it is because of my need for control in my own life. I didn’t get to choose this life – this version of motherhood.

The truth is (and this is one that is so hard for me to admit): I never would have chosen it.

The other truth: I would never want to change it.

I have had so much practice with various forms of grief in my life. People have even come to me as if I should have some sort of answer about how to navigate grief or how to help loved ones new in the grieving process. As if I’m an expert, somehow.

How can I hold SO much love in my heart for this little boy and be so thankful that I get to be his mom, while still deeply grieving the child(ren) I imagined I would have? While feeling that ache for the type of motherhood I longed for my entire life?

I don’t know. But all of it lives deep in my heart, and it has been seeping out during this season.

I’m supposed to be listening to the words of the song, but I am too distracted making sure he doesn’t feel left out because he’s sitting in his wheelchair while the rest of us stand. I try to focus my mind on the pastor’s message while keeping an eye on his communication device’s screen to ensure he doesn’t yell out today’s date at top volume in the middle of the Christmas Eve service.

I am painfully aware, in every moment, how much space we are taking up, in a crowded sanctuary. We managed to get a wheelchair space, but there are chairs set up right behind, and with his communication device and the push handle of his wheelchair, he’s long. His communication device is right behind the head of the man sitting in front of him, and his handle is definitely in the woman’s space behind him.

I try to quiet the never-ending commentary my anxiety gifts me by reminding my brain that he is allowed to take up space in this world. And I need to stop apologizing all the time for it.

I was awkward and clumsy, helping him back into his chair after the songs (Daddy Eric wanted him in our laps for a family photo and for some of the singing at the beginning of service). It took too many minutes for my heart rate to slow and my brain to stop perseverating over it.

I am allowed to take up space in the world, too.

You know how there is no manual out there for parenting?

I have no idea what I’m doing at least half the time. That’s probably a conservative estimate. And even though I doubt people are watching/judging as much as my anxiety imagines they are, we also absolutely do stick out in public.

Well, maybe. It’s amazing how many people seem to not see us as we are trying to navigate through a crowd.

I wanted so badly for it to be a peaceful Christmas Eve service, and instead, I was a stressed out, frustrated, tired mama throughout. Unsure of how to navigate it all, worried what others might think or feel about the space we were taking up, and overwhelmed by the crowded church.

I am thankful that I caught the part in the pastor’s message where he reminded us that we are welcome – and safe – in this church and with God – just as we are.

It’s a quiet morning. Kiran is celebrating with his dad this year, Eric is getting some much needed sleep after getting up at 5 am to get the turkeys in, Pickle got his good food, and Tux has a new toy. The Macy’s Thanksgiving Day parade is on, and the coffee is strong.

I am stepping away and pretending I’m not a grad student until Monday, and it’s a much needed deep breath.

I miss writing about my life, but honestly, I haven’t had the energy. Or time. Or motivation. It’s been a challenging and overwhelming season.

I have been taking steps to really take care of my mental health – and honestly, that is taxing too. It’s hard work, shooting for balance.

Kiran has been doing so well. No illness so far this school year!! I know we are getting into the worst of the cold/flu season, but I am thankful we got this far. His health overall has been stable and we are currently enjoying a time of simply routine appointments with all his specialists. I know this ebbs and flows, so I am always thankful for these times.

He had his last speech session at Childserve last week, before starting a pre-planned step away from outside therapies for the rest of the school year. This will be the first time, since he was a year old, that we will NOT be going to Childserve twice a week. It is a long overdue break for us all. We will check in and re-evaluate and make a longterm therapy plan sometime this spring, but I am firmly not starting any outside therapy until summer at the earliest.

I guess you could say I am thankful for the steps our family is taking toward balance.

Am I a good mom?

I think, if I’m being brutally, vulnerably honest, I ask myself that question every single day. Some days, multiple times.

Yesterday was such a good day. Kiran had his miracle league baseball game with great buddies, and both sets of grandparents were there to cheer him on.

We had a birthday party of a dear friend to attend, and Kiran was so happy and had a great time.

And then – for the second time in almost 8 years – I accidentally yanked his g-tube out while feeding him his snack. And instantly, all the “good momming” I had done for the past – I don’t know – YEARS – went out the window.

Ugh.

There is no manual for parenting. For anyone. And there is especially no manual for a unique kid like Kiran. I definitely parent with confidence – and advocate with even more – but it’s all feigned.

I have no idea what I’m doing most of the time.

And sure – I could take credit for his happiness – but really, that’s him. He is a happy, easygoing dude. I have nothing to do with it, and I’m SO thankful for it.

I’ll question forever. And it will keep me striving to be the best mom I can possibly be for this amazing kid.

It’s all I can do.

As someone who has always tried to make herself small – blend into the wall – I still find it uncomfortable to take up space. I find myself apologizing for Kiran taking up space.

He takes up more, now, with his wheelchair mount that holds his communication device. I was just envisioning what it would be like to take him to the grocery store, just he and I – how long a train we would now make, with the communication device out in front, me pushing his chair, pulling a grocery cart behind me.

Why not just leave his communication device at home? It’s so much to cart from place to place.

I know.

But I wouldn’t want someone to take my voice away simply because they find it inconvenient. And now, Kiran finally has his voice, and I am going to do my best to be sure he has it in every situation, to whatever extent possible.

I have so many thoughts and feelings swirling around today, Kiran’s first day of second grade. There has been so much change this summer, and it’s a lot to get used to. His new wheelchair and now mounted communication device make him suddenly unable to be inconspicuous – not that he ever really was before. He stands out, he is noticeably different from his peers, and he takes up space in this world.

And it is so much easier for me to fight for his right to take up space than for my own. I’m working on that. But I know for damn sure, this world needs to make space for my boy. I’ll be clearing the path.

Kiran is my favorite human.

I tell him that frequently. It’s the truth. It’s an easy truth, for me. He is the best human I know, and I love him with all that I am.

But the grief hits. Sometimes, it is totally unexpected. Other times, I am able to prepare my mother’s heart.

Tonight, while sitting out on the deck, I heard the neighbor kids playing catch with their dad. Lots of giggling and chatter – and the grief pierced me.

I don’t like it. My brain and my heart work to reason it away. But I also know it’s important to acknowledge it. Own it. Feel it.

I have learned how to live in this space of utter juxtaposition – where I grieve the motherhood I dreamed of my whole life and the child I thought would be mine – while also fully embracing this motherhood that involves caregiving and advocacy and uphill battles and so much paperwork and fighting and the beautiful child I am truly privileged and blessed to call mine.

Not everyone will get it. It’s why I write about it.

There is so much that is so hard but it’s equally beautiful and amazing.

And always. Always. Worth it.

Mom guilt is such a real thing and carrying it around can get so heavy. My load was lightened today.

Kiran’s former feeding therapist, who he saw for 2 1/2 years up until fall/winter 2020, was gracious enough to meet with us to further go over his swallow study results. She has extensive experience working with Kiran, of course, and knows his feeding trajectory well. She also went along to one of his former swallow studies – she is one of those above-and-beyond therapists that come to mean so much to families like mine.

It felt good to go over the swallow study with her. I was glad to receive permission to not work on feeding therapeutically at this time – and it means a lot more coming from her (rather than the SLP who just met Kiran same day) that formal feeding therapy is not indicated at this time.

But the best moment of that meeting was at the end, as we were walking out into the hall to head to Kiran’s physical therapy appointment. I remembered to get her opinion on what I felt was true: that these results were an indication of Kiran’s true swallowing abilities all along and not a matter of regression in skills. She agreed with me – and in that moment, validated me. It means I didn’t fail him during Covid by not keeping up on practicing all the skills we had been working on. It means that even if I had been doing all the things, his body wouldn’t be working properly right now to have a safe swallow.

It means I can drop just a bit of that mom guilt.

I wish I got to choose when my eyes fill with tears. Or when life just hits me upside the head or makes my heart ache fully.

Kiran and I just got back from a special story time at the library – it was a city bus story time, and we got to take a ride on the city bus after!

During the story time, I had to grapple with a lot of emotions. First of all – the joy – Kiran has come so far in how he is able to participate during story time. He is able to approximate actions, and he is more willing to stand up with my assistance when the activity warrants it. I was just so proud of him, and it was such a difference from what it used to be.

Kiran’s differences are becoming more stark. This isn’t a surprise to me; I knew as he got older, the gap between his abilities and those of his peers would widen. He (we) got a lot more looks today, from kids and adults, because Kiran gets excited and likes to vocalize during any group activity. I was really aware of this today, but I was also aware of something else – I am definitely a work in progress, but it bothered me less than it used to. I think my practicing mantra of “You are allowed to take up space” has helped. I know that being out in the community is just as good for the community as it is for Kiran. I know Kiran’s friendship is meaningful. I know that awareness brings about acceptance and advocacy. I still felt embarrassment when he was particularly loud during a quiet part of the story and we got lots of looks…but I also didn’t shush him. I know it’s okay for Kiran to be Kiran and to exist in this world, and I am working on my part in facilitating that truth.

I had no idea all city buses are accessible. I don’t know why I assumed this, but I thought just certain ones were – maybe because the ones that will do door-to-door service look different, and I just made an assumption that was our only option if we wanted to utilize city bus services. I’m socially awkward and anxiety-riddled, so I’m not sure I would have ever put myself in a position to try and ride a city bus with Kiran – certainly not by myself the first time. I really thought we wouldn’t be able to participate in riding the bus with all the other kids after story time…and I was really relieved to be wrong! I had to blink back tears as they put the ramp down and the driver got Kiran’s wheelchair secured. Accessibility shouldn’t be this powerful, because it should be the norm. I am thankful it is when it comes to city transportation in our area. I am thankful to have this information and even learned there is a bus line downtown that is free that takes passengers around the sculpture park – sounds like a summer adventure to me!