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.

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.