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.

At this point in time, Kiran is not scheduled to have a heart procedure. We are still monitoring his heart function closely, watching for the numbers that will tell us it is time. Agreed upon plan of care, there, is to really let his body show us he needs intervention. No panicked early starts, because we want to minimize the total number of heart procedures he will need during his lifetime.

The surgery my last post is referring to is “just” a gland removal. I am realizing and grappling, as I write this, with the ridiculousness of that descriptor. Just. Truthfully, as evidenced by my inability to fall asleep last night, any surgery is not “just” ….

But thankfully, it’s not his heart I am talking about.

Kiran has had excess drool most of his life. Certainly for as long as I can recall. He doesn’t manage it well. His swallow isn’t very strong. We soak through masks, bandana bibs, or shirts frequently because of this. We also think it may increase his difficulty with eating orally.

This past fall, he underwent a Botox procedure, where Botox is injected into the parotid glands and submandibular glands, 4 of the 6 main salivary glands we have. This is a temporary management to see how Kiran would do with less saliva production.

We noticed a difference. Many people, including teachers and support staff at school, family, and respite care providers, noticed a difference. It made the drooling more manageable and increased his desire to drink his thickened water. The effects started wearing off after about three months, as expected for this procedure.

The otolaryngologist is willing to repeat Botox procedures up to three times before she strongly suggests gland removal. However, with Kiran’s medical history and the amount of times he has to utilize anesthesia, we want to limit that. Seeing the progress Kiran had made with the Botox made her confident that removing the submandibular salivary glands would improve his quality of life in this area.

And I agree. Minimizing procedures is always the way to go, especially when the medical specialist states that is the path they would take if it were their child.

So we have a date on the calendar: April 4th. And I have the packet of those damn pre-op wipes to use after his shower the night before surgery.

We see cardiology again on March 22nd, so it’s possible something will come up and this entire plan will need to be recalculated. But I’m hoping for heart stability and continued waiting on that front. Please join me in that hope.

The packet of wipes brings reality sharply into focus. You know the one – or maybe you don’t – that you have to use to wipe his tiny body the night before a surgery.

Going into today’s appointment, I knew I’d be advocating for this procedure for Kiran. I knew I would need to be strong in my stance, that this was the right path forward for a better quality of life.

I was so focused on preparing my heart and mind for that fight that I couldn’t sleep last night.

And now, even though it’s a month away, I can’t sleep because that packet of wipes is in my house.

Think about that time in your life when someone SAW you – really looked at you and saw you: the good, the bad, the light, the dark, the joy, the sorrow, the struggles….

It’s so validating, to be seen.

I wrote, not long ago, about how I could not have possibly dreamed of the motherhood I live on a daily basis, because I didn’t see that kind of motherhood around me. When I was growing up, I think it was more hidden and less talked about, though a large part of it could certainly be that I simply wasn’t looking.

I try to not give people that option – to not look. And it’s exhausting.

When some people talk about inclusion, disabled people seem to be the group that still doesn’t make the list. I’ve listened for it in sermons and political speeches, when people rattle off who our neighbor is we should be loving or how we need to bridge the divide in our country.

More times than I can count, no one says anything about the person who is different neurologically or in physical ability. No one mentions disabled people. It is a group that is still largely fighting to be seen.

And I’m not a part of that group, but I live in close proximity to someone who is. And at this stage in his life, I act as his voice.

His life matters. His health matters. His education matters. His relationships matter.

He matters.

And he will be seen.

I am considering creating my own quote cards

Inspirational? Realistic? Simply acknowledging the suck while also noticing those things that don’t suck?

Here’s some options:

“There is a time for pouting and a time for productivity.”

“A supportive friend is one who acknowledges the grief and darkness, while bringing forth the hope and light.”

Sometimes, I grieve the motherhood I will never get to experience.

While waiting to pick Kiran up from school today, the preschoolers were coming out to their parents. One was particularly enthusiastic about seeing their mom, joyously shouting “MOM!” and running into her arms.

Without warning, tears welled up in my eyes.

But, there was also a smile.

I may never get to experience that particular expression of love from Kiran. And I have to feel those feelings, because they are valid. The motherhood I always envisioned was one in which my child would make a beeline for their mama’s arms while excitedly screaming my most beloved title: “MOM!”

Kiran was wheeled out the door by one of his associates, and he was smiling. We walked to the van where he waited, content (more so than me), for the chaos of after school pickup (and the vehicle parked behind us) to disperse. He came home, exhausted from his day, and wanted to snuggle. And so we did. And we read books. And we had dinner, and he used his communication device to say a few things which seemed really intentional (and we always treat them as if they are even if). And then (after all the other cleaning up and after dinner happenings), I did something I have been doing lately, the last two Mondays actually: I turned on his music and his stars and climbed into bed with him to snuggle and talk and watch his stars.

I could have never imagined this motherhood. I had never really seen instances of it, so how could this have been the dream I had for my life?

And it’s hard…but it’s Wonderful.

I am learning to refer to Kiran as disabled.

Whenever I am able, I listen to disabled adults who are willing to share their experiences. Overwhelmingly, I hear that they want to be referred to as disabled – not differently-abled or special needs or handi-capable – their perspective, as people living with disability, is that these terms are to make able-bodied people, like myself, more comfortable.

Disability is not a bad word.

I listened to a TikTok the other day that is still bouncing around in my brain. A disabled content creator who I have learned a lot from was talking about how able-bodied people seem to always see disability – any disability – as a loss, as something to be grieved. And it doesn’t have to be, and in fact, isn’t always. In this instance, she was referring to the absolute joy a deaf/hard of hearing family experienced when their second child was also born with a hearing impairment. So many people didn’t understand why, even though the family shared explicitly it was because they would be able to have a shared culture and life experience.

But – at Kiran’s parent-teacher conference yesterday when we were talking about his writing goal, his amazing special education teacher made the comment that she sought guidance from another educator/consultant who has experience with people with significant disabilities.

I’m not going to lie. “Significant disabilities” was a punch to the gut. It hurt my heart.

But why?

It’s an accurate description of Kiran. It isn’t all of who he is, but he is a child with significant disabilities. It doesn’t change or negate anything else about him. But my internalized ableism is a work-in-progress, so I still have these reactions sometimes.

And I think that’s okay. Or – at the very least – it’s honest. I am learning. And I am practicing. Until Kiran is able to advocate for himself, I want to be the best advocate I can be for him, and that requires learning all I can from those who live with disabilities. I may be in close proximity to it as Kiran’s mom, but there is so much I don’t know, not having the lived experience.

Two weeks after Kiran’s first anatomy ultrasound, he had a second, more extensive ultrasound. I was by myself that day, because so many had reassured it was nothing to worry about.

It was the day I first heard the words “Tetralogy of Fallot” … only I didn’t retain those words. Best I could say was it was something that sounded French. I was in such shock.

Thankfully, they didn’t make us wait long. We had an appointment the very next day with a wonderful specialist who explained the diagnosis to us and had encouraging words about the survivability of the condition.

Later in the pregnancy – and confirmed after birth – two more heart diagnoses were added, just to make things interesting: pulmonary atresia and major aortopulmonary collateral arteries (MAPCAs).

Kiran’s full heart diagnoses, then, is made up of three separate conditions: Tetralogy of Fallot, Pulmonary Atresia, and MAPCAs.

Tetralogy of Fallot alone has four defects associated with it:

1. Ventricular Septal Defect (VSD) – a hole between ventricles (the pumping chambers) of the heart. This causes oxygenated and unoxygenated blood to mix.
2. The aorta, which is usually above the left ventricle, is to the right and directly above the VSD. This means both oxygenated and unoxygenated blood are going out to the body.
3. Thickening of the right ventricle wall. The right ventricle is working hard to pump blood out to the lungs through smaller arteries. What happens when you work a muscle? It gets bigger.
4. Pulmonary valve defect – In Kiran’s case, pulmonary atresia so more severe – His pulmonary valve didn’t form at all. Typically, this means blood would have no pathway to get to the lungs.

That’s where the MAPCAs come in. They provided a different pathway to get blood from the heart to the lungs to be oxygenated. This is what allowed him to remain surgery-free until he was 10 1/2 months old.

Both Tetralogy of Fallot and Pulmonary Atresia are listed on the CDC’s list of critical congenital heart defects, meaning heart defects that require surgery or other procedures in the first year of life. But it was his MAPCAs that took us all the way to California for a specialty surgeon.

But that’s another story.