New Keen on Kiran Shirts!

We are overdue for new shirts showing we are Keen on Kiran! Mine have been slowly deteriorating due to multiple washes because I love wearing them!

All profits from shirt sales will go toward an accessibility need in our home, ensuring it can be as functional as possible for Kiran.

Here’s the link to our design: https://www.bonfire.com/keen-on-kiran160/

As always, we appreciate your support. I mean it when I say it’s a long road ahead, but we journey together. And who isn’t Keen on Kiran 😍

Heart Stability

Kiran’s heart seems to have found a new stable – for now. His echo today showed similar pressures and pictures as the MRI and last echo six months ago.

So. We get to keep waiting and watching. Fatigue and fluid retention will be the first signs his heart function is declining further.

He got approval to move forward with his otolaryngology procedure next week.

The only change that will be a permanent one is we are starting him on a daily dose of aspirin. Studies have been done that show it helps prolong the life of the valve. Dr R mentioned he had remained skeptical for awhile and had put off a strong recommendation, but the results had him convinced and he felt it to be best protocol for kiddos with heart valves.

So, after we get through his procedure next week, we will be starting a daily dose of aspirin that will continue for life.

These are my favorite appointments. No surprises. Stable results. Assurance of what to watch for and when we will know it’s time for an intervention. Wonderful echo and ekg techs – and of course, I always appreciate chatting with Dr R.

Sticking with six month check-up protocol as well. Keeping a little closer eye on that precious heart. I’m glad it’s not time, yet.

Heartiversary

Tonight, I gave you ice cream.

And I remembered what it was like, to create your bucket list. I didn’t know how long I would have you. And life had only taught me about loss.

So when your complex open heart surgery was scheduled, I made you a bucket list.

You were not even a year old.

I don’t remember all of it. I wanted you to be in your kiddie pool. Experience the ocean. Taste ice cream.

Ice cream. Tonight, you kept opening your mouth for another bite. But every single bite shocked you, because it’s cold. And we don’t do it often.

But tonight, we celebrate. Look at all the firsts you have had – so many more than I would even allow myself to dream about back then.

And now – I dare to dream. And you continue to amaze and exceed all expectations.

It’s a long road ahead, but we journey together. Happy sixth Heartiversary, my warrior.

IN the Dim

I am rather anxious and weepy today. These are not novel ways of being, for me, but it has been a bit since I have experienced them this strongly.

I got really comfortable with hearing “Kiran’s heart is stable; see you next year.”

And now I’m gearing up to leave at 4:15 am tomorrow morning for an early check-in time so Kiran can have an MRI of his heart.

No history exists that should make me anxious about Kiran undergoing anesthesia, but I still know there are risks every single time. I can only hope that everything is by the book once again, and he does just fine with the whole experience.

I don’t know that we will know anything about his heart tomorrow – we may even have to wait for answers until we see Dr. R. in September. I have found that the more time passes, the more comfortable I get in living inside the unknown, waiting for answers or the next step.

All day today, I have just been focusing on getting ready for tomorrow, in all ways. I took the time early in the day to organize the diaper bag, make sure the van had extra necessities, and think through the food and liquid protocol for the day. I have taken many coloring breaks today, as I am realizing how I can make the adult coloring book experience calming for myself rather than stressful (It’s odd how much pressure I put on myself that can make these things meant for decompression into exactly the opposite).

And now, I am writing. It is another tool that I know I have that calms me. Releases the thoughts and emotions to an extent and lessens their power inside me.

My baby’s heart. The very first diagnosis we got; the thing that upended my world. It has been so long (until recent cardiology appts) since I have had to worry about his heart, and it was such a nice reprieve. For whatever reason – with all the diagnoses added since his heart repair, with the life we have been living alongside one another – nothing causes my heart worry like his heart.

Lord, protect his heart … and my own.

Phone

I hate making phone calls. If you want my anxiety level to rise, ask me to make a phone call. And yet – with medical appointments, insurance issues, and just general everyday life, phone calls are inevitable.

I started out the week with four phone calls to make – 3 were related to Kiran – medical and insurance things – and 1 was mine. And though it may sound silly to some, I had made a plan to keep my sanity. I would make 1 phone call Monday, 1 Tuesday, and 2 on Wednesday. Well, after my one phone call Monday morning, I received another medical related phone call that led to yet another phone call I had to make that very day. This means I was on the phone 3 times on Monday. Needless to say, I took yesterday off from phone calls.

You see, something I am trying really hard to do now is take care of myself. I am trying to create some semblance of balance, pay attention to my mental health, and take breaks as needed. Kiran had a respite care provider with him yesterday morning, so I opted to ignore my giant to-do list and actually utilize that time to take a breath. I did have to take the puppy to get his nails trimmed and on the way I spilled coffee all over the passenger side of my van, but hey, I didn’t make any phone calls….

I am pleased to report that as soon as 8 am hit this morning, I sat down and prepared for my 3 phone calls. The first one, I realized I could handle online – perfect! This is my favorite kind of phone call – the one I don’t have to make!!! The second one was the one for me, and I was able to not only accomplish what the phone call required but make a future appt that saves me a future phone call. The third was to inquire about a medical bill that I was very concerned and confused about – and lo and behold – insurance paid, and I can disregard. I got off that last phone call at 8:30, and I have no pending phone calls on my list currently. Hurray!

I sometimes wonder what it would be like to be a person that didn’t struggle with making phone calls or talking on the phone. I really do prepare for them – I make sure any information I think I might need is right in front of me, have a pen and paper handy, take a deep breath….

But I am me, so I guess that’s what I have to work with. And it’s a weight off to have some of these hard ones done, and all the news was good. I am sure more will pop up before week’s end, but that’s okay. It’s nice in the summer, because Kiran helps me through them, giving his two cents in the background. I am pretty sure he was trying to tell the billing guy his name and address today.

One step at a time. And now I get to focus on a new adventure today for Kiran and me. Soaking in these last summer days!

Best Made Plans

What do you do when your plans fall through? Not just every once in awhile, but often? When it feels like every time you turn around, you are trying to piece together a new plan, when you really liked the way the old one looked?

Covid exposure and symptoms led Kiran and me to have to, once again, pivot this past week. Thankfully, we both tested negative for Covid several times, and our symptoms never went beyond mild – no fevers, just some junk and crud.

For me, physically, my body often gets sick when I “let down” after a long period of being in survival mode. I woke up Tuesday morning feeling a bit off, so when I found out Tuesday afternoon we had been exposed two days prior, I think my body just let in whatever virus was trying to break through.

Somehow, I felt like if it was Covid, I had the “right” to be sick. I could justify taking it easy. I was validated in staying home and resting.

I’m glad I never tested positive, and I am glad for the mental and emotional work I have been doing very recently, because I was able to work through that thinking this week. Regardless of what it is or why – even if I’m just plain tired – I am allowed to rest. I deserve to rest. I need to rest.

And though our new plan, which includes no respite care last week or this coming week, in order to not share our germs with others, means the balance I am trying so hard to achieve is off…there is also good in this plan. Last week, I got a lot of snuggle time with Kiran, and we watched his favorite movies (the Troll movies – bright colors and music all the way!) Over the weekend, K was with his dad, so I utilized that time to both rest and tackle the schoolwork I had to, setting me up for a fairly easy last week this week.

And today, K is helping me get through the laundry that piled up, change the bedding, and overall just reset a bit in the house. We will still stick close to home for a couple days, just to be sure, but I have plans I’m excited for when we start venturing out again later this week.

It’s hard for me to not feel like resting is a waste of time, even when I don’t feel well. It’s hard to not feel like we wasted the beautiful weather last week, when we will be stuck indoors with the hot temps promised this week.

But, in case someone else needs to hear it, resting is not a waste of time. It is necessary and important. And you don’t have to wait until you have Covid or feel ill to do it. So – here’s to working toward finding time to rest on a regular basis. Perhaps it will help my body not get sick because I am regularly “letting down” from all the stress and busyness of life.

Blog Redefined?

This blog has always been intertwined – it is about Kiran but it is about Kiran through my lens as his mother. It is about my feelings, my thoughts, my fears around Kiran’s diagnoses and prognoses. It’s the ups and downs and twirling-all-arounds.

Saturday, I attended a day-long retreat for Heart Moms. I didn’t know what to expect, but I guarantee I got a whole lot more out of it than I would have guessed. So this blog, now…I’m not sure where it will take me. It will still be about our journey – Kiran and me – but it may swing more toward my experiences in life as his mom and outside of that distinct role. I don’t want to start another blog, so everyone who follows this one eager for updates on Kiran – I promise you will still get them, but there will likely be more writing and more focus on other areas of momhood and personhood and life journeying.

I hope you’ll stick with me. Kiran’s story is a good one and one worth sharing, but I think maybe mine is, too. And I will never be able to fully separate who I have become from his story, because his presence in my life changes me irrevocably every single day.

Authenticity

Authenticity, to me, means taking off the costume of perfection I have been wearing my whole life. It is recognizing I have been wearing my strength and resilience as badges of honor…and though these remain true about my character, they aren’t my whole story.

To be authentic, I need to accept that strength sometimes looks like asking for help, and resilience sometimes means taking a break.

To be authentic, I need to communicate honestly – with those I love and with practical strangers at a Heart Mom retreat. Being authentic opens up the possibilities of help and connection.

Quick Vent

I know it has been awhile. My head and my heart have not been up for writing.

I am entering my busiest week so far in my first grad school course. So, in true “this is my life” fashion, Kiran came home last night not wanting to put weight on his right leg.

Ok. He can’t tell me if something happened or what hurts, so I have to manipulate his body in various ways and look closely to see if I can succeed as a detective.

I don’t know what’s going on. I call to see if his pediatrician can get him in today (She usually can, same day). Side note: I’m thankful his doc is moving offices next month, both because she will be closer and the new front desk person at this office is very abrupt.

His doctor isn’t in today. The other doctor in that office, who also knows Kiran pretty well, is booked for the day. It doesn’t make sense to take him to a doctor who has never seen him before and doesn’t know what to look for or how he expresses himself in these situations.

Here’s what’s even more fun: Our van goes in for service first thing in the morning. This used to be a non-issue, because we had extra car seats for Eric’s truck and my parents’ vehicle. Now, he’s too big for those and has a special car seat that insurance covered. They won’t cover an “extra” one, and the cost is around $1000. So. We don’t have an extra one.

So the plan now is rest and monitor today. Transfer his car seat to my parents’ vehicle tonight, so if he still won’t put weight on his leg in the morning, we can head to walk-in hours and see what’s going on. Thank goodness my mom is working from home tomorrow.

And it’s all of that. All the extra that wears a person out. Extra considerations, extra steps. All while already entering an overwhelming week.

You cry. You push thru. You make a plan. And you just keep going. It’s a long road ahead (but we journey together). Truth be told, I feel a lot more alone on this journey than I used to.