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!

Last Thursday night, still processing Kiran’s swallow study results, I decided to do something that made my mama heart so incredibly happy: I got Kiran a Happy Meal from McDonald’s for dinner.

I know – sounds silly – “unhealthy” even (save it) – but it brings me such immense joy sometimes to just let him experience what a typical kid gets to experience. I know that if he was a child who got his nutrients by eating orally that we would sometimes have McDonald’s. Not often, but there would be times. I own that.

So what does that mean, for a kid who can’t safely take in very much food orally? It means he licked a french fry I was firmly holding, and I put his milk, cheeseburger, fries, and apple slices into the blender, where they were pureed to go through his g-tube.

It also meant I had a quarter pounder with cheese and some french fries myself; it’s part of the therapeutic process.

Blending real food for Kiran is one of the things I started doing because it makes me happy. Not the chore of it – at least not always – in fact, more often than not, Eric takes on the monthly task of making 16 different meals in large volumes to freeze – but the knowledge and reality of knowing that he is getting what a typical child his age would eat orally through his tube. Now, let’s be reasonable – his blended meals have far more fruits and vegetables than most going-on-eight-year-olds would eat. But something about blending the occasional oreos and milk as a treat or the only-twice-ever-in-his-life Happy Meal for dinner….

I wish I would have written about this on Thursday, when I had that actual feeling. Earlier this afternoon, I got on MyChart and read the SLP’s full note/report on Kiran’s swallow study, and it was a punch to the gut all over again. It’s hard not to let fear or defeat completely overtake me when I see just how difficult and risky eating is for Kiran.

The cycle of grief I continually experience gets so heavy at times. And it takes time to process, emotionally and mentally. Sometimes, a Happy Meal helps.

Last night, I sat on the couch and had a conversation with Eric about his idea for his next tattoo – his chef tattoo – the one that is all about food. About flavor and spice and the life-giving enjoyment food brings.

And today, when I shared the results of Kiran’s swallow study with him, he cried. I have, too, a few times today. But I think it’s important to share this to illustrate the grieving process I have gone through Kiran’s entire life around nourishing him – and Eric has gained more of a front row seat and is really going through it alongside me these days.

We were still following oral eating recommendations from a swallow study he had in 2019, so it was beyond time for another (general timeframe is annual). I don’t think the results we got today signify a regression in Kiran’s eating skills. In some ways, it’s the exact opposite. I think Kiran was able and willing to take more bites and swallow more than he ever has in previous swallow studies, so we were able to get a more accurate picture of what is happening in his body when he eats. And what is happening is frequent, silent aspiration, at all consistencies.

And so – we have some new, strict recommendations for his oral eating, in order to keep him safe but still allow him to practice – his swallow will only ever get better – stronger – with practice. (And isn’t that a bummer – there is risk in eating but that risk won’t reduce unless he can eat)

We are to do away with the thickener. Kiran was aspirating with all liquid consistencies, and the SLP felt the safest way to give him water, IF we want to give him water orally, is to do so without the thickener. This is so he’s not aspirating the thickener – water is the safest thing to aspirate (though still not actually safe). I could sense her hesitation, so I asked if she felt like it was safe to give him water at all, given what she saw today. She said no. But: quality of life. If he enjoys having sips of water and it benefits him, and we want to continue to allow sips of water, just water is the most safe option. Kiran has never drank large amounts of water – we are lucky if he gets in 1/2 oz to an oz daily – so I will continue, especially in the summer heat, to offer sips throughout the day.

Thicker purees (think Greek yogurt consistency) are okay, but she wants us to limit these to 10-15 small tastes (tip of a small spoon – tiny bites), because – again – aspiration risk, though this was the consistency Kiran managed the best, with the least amount of aspiration seen. She wants him to have the enjoyment and the practice but do so in the safest way possible, minimizing as much risk as possible. Quality of life.

When I asked about crunchy meltables, previously encouraged and okayed, I could tell she would prefer we not do them. It was more of the quality of life mantra, but saying maybe 1-2 tastes here and there if it’s something he really enjoys. Safer way to continue practice chewing is with his chewy tubes and some exercises with his z-vibe; I asked about and got the okay on both. We will eliminate all solids like this for now.

I am wondering if a lot of people, at this point, would just opt to stick with tube feeding in lieu of practicing orally at all. The swallow study didn’t paint a very pretty or positive picture for us today. But I still think Kiran enjoys his tastes enough – and we want to share the food experience with him in our family so much – that it’s worth following the guidelines strictly but still trying to practice with oral intake. It *is* possible his swallow will improve, if we are consistent (moreso than we have been these past few years) in our practice. It is also possible this will be the approved diet for the long haul. It certainly seems to solidify, for me, what I already knew in my heart to be true: The feeding tube is here to stay.

I had been toying with the idea of returning to feeding therapy in the near future, especially if the swallow study had shown us improvement today, which I hoped would be the case. I asked about this, too, if the SLP felt it would be beneficial with what she saw today/where his swallow skills are at the present time. The answer was no. She wasn’t sure what could really be done at this point, other than monitor and make sure he’s handling the recommended oral diet, and she felt we could manage that just fine at home. I liked the straight answer on this, because I have been also thinking about giving Kiran an actual break from all therapies in the very near future…but that’s another blog….

I appreciate information and am thankful for the most accurate picture of Kiran’s oral eating/swallowing we have ever gotten his whole life. Even though it wasn’t the news I anticipated or hoped for, it is still important, valuable information to have. Keeping this dude as safe and healthy as possible is key. I’m wrapping my head around our new summer eating protocol and thinking about all the foods we can practice his tastes with: Greek yogurt, applesauce, creamy mashed potatoes, hummus, pudding, frosting (his favorite on special occasions!)….

And I remind myself that *I* (and Eric – and possibly other adults this affects) am the one grieving this. Kiran has spent his entire life with a feeding tube, just eating and drinking small amounts orally to practice. This really isn’t much different. Because of his life experience, food doesn’t really motivate him, and he doesn’t seem to be concerned one way or the other if he eats orally or is just tube-fed all day. He is still my happy, joy-filled guy – and I love him with my whole heart, just as he is.

I am still sad.