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.

True inclusion does not equal proximity to peers.

Kiran was participating in an activity recently, specifically geared toward kids with disabilities. He happened to be one of two kids using mobility devices, and the only one who was not independently mobile in this group. At one point, the kids were all lined up, shoulder to shoulder, waiting for their turn on the next activity. And the very person who should have known better had wheeled Kiran and left him behind all the other kids. By himself.

Anyone who knows me knows I am anxious and avoid confrontation at all cost. I was seconds away from getting up off my place at the bleachers and going over to wheel him up to the line with his peers myself. The only reason I didn’t was a volunteer, who I had watched interact with Kiran throughout this event, noticed and went over to him and started engaging with him.

I’m still, days later, thinking about this. I am still angry about this. Furious, if I’m honest. And it has me thinking about and wondering what inclusion looks like for Kiran when I’m not watching. If this can happen during an experience specifically for disabled kiddos, with the people who have inclusion in their hearts and as their mission, what is happening at school?

There was a classroom party I attended earlier this year. We were late getting Kiran down to the classroom, and the centers were already in full motion. For the majority of the party, Kiran was sitting with the other kid from his special education classroom, the two associates, and me.

That’s not inclusion. That’s proximity to peers. We have to do better.

Blogs I’ve been meaning to write/random thoughts from an overwhelmed mom who is figuring out how to be more than just that:

I want the surgeon who makes us wait. This doesn’t negate the hard parts of waiting. But this means that the surgeon has their priorities straight and will take the time necessary when it’s my son in the operating room. I want that surgeon. I don’t understand people being upset in those situations. I will wait, because I know that I want you to be that thorough and conscientious with my sweet boy.

The never-ending nature of laundry is really getting to me these days.

I am about to embark on the biggest letting-go experience of my motherhood journey. I looked Eric right in his eyeballs today and said “I trust you. You are going to have to make decisions about Kiran on the days I’m in clinic, and I want you to know that I trust you to make the best decisions.” It’s true, but it doesn’t make it less hard.

This, too, shall pass. I know this is a season. Due to Eric’s current job opportunities and me starting clinicals, the next two months will be incredibly busy with not a lot of family togetherness. But it’s a step along the path that eventually will get us to a positive balance in life. I have to keep reminding myself that my ultimate goal in all of this hard is to have a career that allows me to be present in Kiran’s daily life. I may not be his primary caregiver every day along the way, but ultimately, it will allow me to be his primary caregiver long-term.

There is never NOT something on the horizon for Kiran. There is never NOT the next big decision, the next piece of adaptive equipment, the next diaper size, the next….there is always something looming. Something to research, phone calls to make, insurance to deal with. And none of it is ever straightforward or easy. Or cheap.

Imposter syndrome remains real and daunting. I am doing my best to quiet the negative voice in my head as I go into this week, but I consistently wonder if I really have what it takes to put knowledge into practice. There is a reason I didn’t go to grad school during the traditional timeframe, and I think it has a lot to do with fear of failure. You’d think, at damn near 40 years old, I would have grown out of this. I wonder when I will ever feel like I know what I’m doing.

Life continues to throw little curve balls our way, which feel unnaturally overwhelming due to everything else going on. I continue to laugh so I don’t cry … but let’s be honest, sometimes, I cry.

I am so thankful to be here. All of the hard and busy and overwhelming…I am still so thankful. I recognize how blessed I truly am to be in the position I am in. It’s not easy, but it’s worth it. Or at least it will be, if it doesn’t feel like it is in the present moment.

I feel like I’m going to miss Kiran a lot in the next couple of months. This also makes me determined to set boundaries and achieve whatever balance I am able to during this busy season. If I do it now, it will be easier over the next couple of years in the next clinical placements. Time with Kiran and with family/friends will be so valuable, and I have to work hard to carve it out.

I am not ready. But I am so ready.

Go listen to this song: https://youtu.be/50ygAc2qP5A

The man who wrote and sings this song has a son with a congenital heart defect. It has brought me to tears, provided me comfort, and readjusted my heart numerous times on my journey with Kiran.

It is human nature to want to protect ourselves, and I have struggled on more than one occasion with attempting to build walls around my own heart, to practice avoidance, when big things are on the horizon.

Maybe because it has been years – literally since March of 2017 – since Kiran has had a surgery – Tuesday has really been affecting me. I’m emotionally flailing. I am practicing avoidance again, trying to barricade my heart.

But, what I want to be doing: “Let me recklessly love you, even if I bleed”

I know so many of you regularly lift our family up by praying for us, sending good vibes, and being in touch with encouragement…I ask for all of that over these next few days, and especially on Tuesday. Kiran is older now, so he doesn’t get the comfort of being first case anymore. We check in at 11 am, and he can’t have anything to eat past midnight (I do plan to wake him and give him a snack and some pedialyte prior to midnight – that’s a long time for a little dude!)

There are other factors at play this time, too, that increase my anxiety. And I ask that you include prayers and thoughts for respect and peace for everyone who will be present that day.

Kiran is a strong, brave little boy, and I have the utmost faith in his surgeon, in his history of textbook anesthesia experiences, and in his fighting spirit. Somehow, even with all of that, I am struggling.

If I’m being honest, I don’t know how I am going to do it. I have been struggling, since grad school started, with juggling the things currently on my plate. And I am about to add another big, time-consuming, brain-draining thing: clinical placements.

Today, I am having a day of complete overwhelm. I feel like I am being pulled in a million different directions, and my limbs might actually detach themselves from my body. I feel like I could explode into a million tiny pieces, each floating through the atmosphere holding the very anxiety that makes up my entire being.

I am trying. I am trying to put practices in place and utilize smart strategies, to achieve balance, to stay present in the moment I’m in, to let go of the perfectionism I have carried since birth.

But if I’m being honest, I have days I regret choosing this path. I wonder how in the world I can possibly keep walking it – for two more years. How much will I miss? How much will I have to let go? What are the consequences of my divided, broken attention?

Long-term, this, too, is for Kiran. And me. But right now, I fear I will miss so much. I fear I will not be able to be the mom I want to be for him. I know this, too, shall pass, and at the other end is hopefully a career that will fulfill me and allow me to be the mom I want to be for him. I also know that I have built a support system who love and support both Kiran and me, and they’ve got this. They do.

I’m just not sure I’ve got this.

Early morning echo, ekg, and cardiology appt this morning. We are already on our way home!

Kiran did so well during his echo and ekg. For the first time, during his echo, he wanted to sit up and look at his heart on the screen in real time. The echo tech was so wonderful and flexible, allowing him to “help” and to move his body to see better. It was as fun of an experience as an echo can be!

Dr R described his heart as stable, but his pressures did increase. They were around 40 and are now around 50. Pressures will be around 60-65 before intervention is warranted. He is guessing K will need a cath lab intervention for his conduit (ballooning, closed stent are options mentioned) by next summer. He is hopeful about cath interventions because there is so much more they can do to prolong the life of a conduit now, allowing him to continue to grow. Ideal situation would be Kiran growing into a more adult-sized body before he would need a new conduit placed via open heart surgery.

It’s a great time to be alive, with all the technological and medical advances happening all the time.

Surgery for his submandibular salivary gland removal was approved, as was holding his daily aspirin for a week prior and a week following the procedure. This greatly reduces the need for a drain or any bleeding difficulties with this procedure.

So – celebrate the good news and get my head wrapped around surgery happening in less than two weeks. Here we go.

Every once in awhile, I get myself caught up in a spiral of trying to figure out future solutions for Kiran’s needs. It gets overwhelming and frustrating, and mornings like this one, I just end up – well – pissed.

On our journey home from appointments this past week, Kiran needed a restroom. There are times his situation requires a full wardrobe change, and, inevitably, this often happens NOT near the rest area that has the adult size adjustable changing table. It has been awhile since this has happened to us, and today’s facebook memory which prompted my solution-finding frenzy was the one from a year ago about that new accommodation.

I love that we are moving in the right direction and there is one rest area between Des Moines and Iowa City with a dignified, comfortable space for disabled loved ones to have their restroom needs tended to…but it’s not enough.

I opted for a basic kindermat with pillow. That’s the best solution I could find. The foldable travel cots were either only so long as Kiran would grow out of them within the year…or way too long to fit inside an accessible bathroom stall. So, I found a solution for Kiran’s comfort and to get him off the nasty rest area floor…but not a solution that’s going to help my back.

And now, this has put me on a quest for a swim diaper for this summer. I thought I had found a great solution someone suggested for reusable ones, until I saw the price tag. Ten for $300. Sigh.

Why is it so hard to find what we need for our kiddos? Why aren’t companies stepping up when there is such a need for families? And why why WHY does everything deemed “special needs” have to include such an exorbitant price tag!?!

When the world isn’t made for disabled kids, the responsibility to find solutions is placed on the caregivers. And that sucks, because we are already exhausted and overwhelmed.