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.

Advertisement

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.

Always Late with the Update

Kiran saw his cardiologist a week and a half ago. The fantastic news is his heart is stable from six months ago – no more decline in function. This means Dr. R. is less sure Kiran will need an intervention as soon as he originally thought. However, I had some concerns with noticing increased fatigue. He has been falling asleep somewhat frequently during rest time at school – which, if you know Kiran at all, he has absolutely earned himself the nickname “The Supervisor” at school because he ALWAYS has to know what’s happening around him. And he has been getting tired earlier at night, too, often seeming ready for bed by 6:30!

With all of that in mind, we made the decision to move forward in scheduling an MRI of his heart, to get more information about its current function. This is less invasive than going into the cath lab, obviously, and the cath lab would likely require an MRI of the heart prior anyway, so we aren’t adding any unnecessary steps if we find Kiran does need an intervention.

It all just freaks me out, honestly. His heart has been the least interesting thing about his medical care and daily life for so long…I’m not ready.

Other than that, Dr. M. took a look at his feet again. I get tired of people saying things like “possible future surgery” so I am being super diligent again with the foot stretching and making sure Kiran has the appropriate shoes. Not that my diligence ever stopped, but I continue to do everything possible to avoid any need for future casting or surgery with his feet. Overall, Dr. M. thought things looked pretty good – and we were able to graduate to annual appointments, finally, with him.

Another necessary appointment day in Iowa City in the books. We survived, no terrible news, and the appropriate steps forward for Kiran. One step at a time.

Big Boy – Appt Updates

I am a little late getting this update on here, but the past two weeks have contained a whole lotta life.

Kiran’s first appointment on Thursday was with a nurse practitioner in otolaryngology (ear, nose, throat). This appointment has been in the back of my mind since 2020, when Kiran’s feeding therapist at the time mentioned a procedure that may make a huge difference in Kiran’s saliva production (and therefore, swallowing abilities). I consider it a “due diligence” appointment. The NP was in agreement that Kiran is not a good candidate for medication, because there isn’t a good one that will localize the drying up – meaning his eyes, gi tract, etc. would dry up as much as his salivary glands would. With his vision and constipation issues already, this doesn’t seem like a good option for him. I am relieved, because I have always felt strongly against adding this type of medication. We ultimately decided to follow up with a staff otolaryngologist and got an appointment for next month. She will be able to discuss with us other possibilities for saliva management, which include injections directly in the salivary glands or surgical options.

Honestly, I have a feeling this due diligence will give us good information, but I will likely want to opt out of any procedures at this time. Kiran isn’t having any medical issues with management of saliva – no excess, unproductive coughing, no pneumonia developing – so it probably won’t be worth the risks involved with these other options. But. Due diligence.

Next, we saw his regular ophthalmologist for his vision checkup. And the BIG news of the day is Kiran sat by himself in the chair for almost the entire vision appointment!!! I was tearing up several times throughout, because I can’t believe how much he has grown and matured this last year. He is able to understand a lot more (this is old hat for him at this point, after all), and he is more steady with his body….I just….man, he makes me so proud.

We weren’t able to come off the eye drops as I had hoped. Kiran is on a daily dilating drop because of his microcoria, which is a fancy word for small pupils. Dr. felt his pupils are still pinprick without them (I skipped the eye drops Thurs. morning so she could assess this accurately), but they dilate well with the drops. And especially with the eye gaze devices he is using for communication, she felt it’s important to continue at this time. The hope is his muscles will eventually learn (like they did last time we were on eye drops) to return the pupils to their resting state at that bigger size. Our only other option to address this is surgery, and we all agreed we’d rather just stick to the eye drops for now!

Kiran continues to amaze me every single time we have an appointment day. It was a long one, but he wore his mask like a pro and went with the flow for everything. He is growing up, getting stronger, and finding more independence right before my eyes, yet I still can’t believe it. He’s truly an amazing kid and I’m so happy I get to be on this journey with him.

Authenticity

A random word generator gave me my word for 2022: Authentic. I like it. I specifically like this particular definition: true to one’s own personality, spirit, or character.

I don’t write as much when I feel I cannot be my full, true, authentic self. A personal circumstance over the course of the last year and a half has limited my ability to do so, which is why the blog has been sparse.

I don’t like that I haven’t been writing, but I dislike far more passionately feeling like I have to censor myself.

This is the first day of 2022. I no longer put any weight on the whole concept that a new year will bring new circumstances – same stuff, different day. And yet, 2022 holds the potential for some pretty big things.

Grad school may or may not begin for me this summer. Kiran’s heart may need an intervention this year. And then there is that other large personal circumstance I cannot share, that I would absolutely love many, many prayers for, especially in May.

I want to take a moment today, to just remind myself and anyone reading this: We are still here. Look at ALLLLLL the hard the past two years have brought, and we are still standing. Beaten, worn, perhaps forever changed – many of us, myself included, have experienced unexpected loss, perhaps related to the ongoing pandemic and perhaps not. Relationships have been challenged, broken – oof. I mean, it has been rough.

I want to spin positivity, but the truth is – I’m not convinced I am better for it. The experiences of these past two years haven’t necessarily all shaped me into a better person. I’m grappling with a lot of darkness in my heart. But I haven’t lost sight of my priorities – my son, my family, beloved friends – my desire to bring more love and good into the world than anything else.

I think my point is simply this: It is okay that we are just here, trying our damnedest to be the best people we can be in this impossible life we are living. And just a reminder that others don’t have to always understand – and that sometimes people aren’t meant to be ours for the duration.

In the meantime, the people who are walking with us – man, this life is precious. I always say “It’s a long road ahead, but we journey together” in order to capture the daunting nature the road I’m traveling often has. But I could just as easily say it’s a short road that could come to an end at any time. So the one thing about me that I hope never changes is this: I am going to love with everything I have.

Here’s to the darkness not winning. Happy 2022.

tired

I’m tired.

This has been a season of difficult decisions, one after the other. A season of assessing risk and making tough choices, when there is no easy answer to be found.

I’m tired.

This has been a time during which I have been forced to assess the people in my life, and as it turns out “my people” are few and precious. And unexpected.

I’m tired.

Every time I see the light at the end of the tunnel, it turns out to be another damn freight train coming at us.

I’m tired.

I am making the best decisions I am capable of and I own every single one, and yet it is also somehow on me to carry the decisions others are making.

I’m tired.

I don’t want to do this anymore. I don’t want to make another single difficult decision.

I will. Because that’s what I do. I am Kiran’s mama, and we have come too far for me to stop assessing risk and making hard decisions now. He gets his second shot next week, giving him a level of protection he hasn’t had. He’s back in school. We will spend time with extended family this Christmas, Omicron-willing (that’s the freaking freight train, and I am grieving grieving grieving).

And I am so damn tired.

I got this.

We had Kiran’s annual waiver assessment meeting yesterday afternoon. One of the questions that was asked was on the scale of 1-10, how confident are you in your ability to provide care for Kiran. I answered 10.

Six years ago, days before he was born, I would have answered -800. Five years ago, just a month and a half after his open heart surgery, maybe I would have answered a 3.

But, days shy of 6 years into this journey, I answered a 10.

There are lots of reasons for this. The one I will share is that I DO recognize that in the past six years, a lot has been thrown our way. And every single thing, I have handled. I have figured out. I have learned. I have moved forward and done what it takes to keep Kiran safe and healthy and living his best life.

I am his mom. But even beyond that, I am his caregiver. And no matter what is coming, what has already happened allows me to know this one truth: I. Got. This.

I just need to remember.