True inclusion

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.


Quick, Random Thoughts

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.

All of Me

Go listen to this song:

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….

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.

Let’s Go

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.

It’s “Just”

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.

To Rid the Skin of Bacteria

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.

To Be Seen

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.