Tuesday Thoughts

This is the last week before my spring semester starts. Instead of taking two classes, because it wouldn’t disrupt when I can apply for grad school, I opted to drop down to just one class. I am hopeful this will allow a little more balance in my world as I continue to juggle everything Covid and life has thrown my way.

I spent a decent amount of time on the phone yesterday with a scheduler trying to coordinate some upcoming appointments for Kiran in Iowa City. I am still waiting on a callback for one particular appointment which has been surprisingly difficult to get scheduled, but most of 2021’s appointments are now on the calendar.

I was surprised that he was due for his two year follow-up with genetics. I just can’t believe it has been two years since we decided to do the whole exome sequencing. I am excited to see if any more research has been done on his rare substitution.

Today, I have spent the majority of my day swallowing down panic over an abnormal lab result that came in this morning. I have already emailed and gotten a response from his oncologist, but the response was essentially she will need to “weigh in all the other results combined” before discussing what this result may mean with us.

The waiting is always the worst for me. Try as I might, I spiral to the deepest, darkest places. It must mean the worst thing, because that’s the card life has dealt me too many times. I googled it – I always do, even though my advice is nobody should ever do this – and it actually doesn’t make sense to me that this particular lab would be elevated for Kiran. So despite the panic and the dark, I am hopeful and see some light that perhaps the oncologist has a simple, non-tumor explanation for it, especially since all the other labs so far have come back normal.

We played – but didn’t win – the billion dollar lottery jackpot. If we had, in a heartbeat, I would just be Kiran’s mom full-time. It’s a full-time job, after all. I learn that every time I have a break from school, when life just doesn’t slow down. It fills in, with my favorite part of all my jobs – mother.

A Week and A Day

I generally write about our appointment days while sitting in the car on the way home afterwards. That is why it is very weird that our appointment day was one week and one day ago, and I still have yet to write about it.

I was exhausted afterwards. Kiran was exhausted afterwards. My dad was probably even exhausted afterwards, because it can’t be easy to entertain yourself for that long when you can’t go anywhere or do anything (and aren’t allowed into the hospital to go spend time eating, which is one of his things usually).

For those who were following along on facebook and wondering how the urine collection went…not well. The bag they gave me really didn’t work well – he pretty much got pee all around it with a tiny amount actually inside it. I had to put these cotton pads in his diaper – twice – throughout the time we spent at the hospital, making our very last thing of the day delivering urine to oncology. Weird.

We had one of the best experiences getting labs drawn that we have ever had. This is one of Kiran’s least favorite things. I requested the lidocaine with the j-tip application, because this is a trick we learned a couple years ago when he first got to experience it. And they got the needle in on the first try (he’s always a tough poke!) and were able to get all of the blood they needed quickly. The worst of it was Kiran gets mad when you make him hold his arm still that long. He grimaced a little with the initial pinch of the needle going in, but he didn’t yell or cry out or sweat or anything…but he did still need a mama hug immediately after.

The oncologist essentially got caught up on what we have been seeing, and it was decided if all the labs come back normal this time, we can wait six months before coming in again. At this point, all of the lab results that have come back are normal. This is a relief and not all that surprising – his symptoms remain stable, and no new ones have popped up. Still, I like normal numbers!

We saw a new ophthalmologist to make sure we were plugged into vision services (we are) and to have an extra person to help coordinate and make a plan for the accommodations Kiran may need, especially in the classroom with kindergarten approaching. At least that is my basic understanding of why Dr. D had us meet with him. He did one vision test on Kiran and deemed him to have “usable vision”. Not normal vision but usable vision. I feel we already knew that, but it’s nice that the test showed him that – and also, it was consistent with the test results Dr D has gotten in the past with this specific test.

Next came the eye appt with Dr D that really stretched us both to our limits of patience. He did a pretty good job of actually putting his chin and forehead on the contraption so Dr D could get a quick look into his eyes, so she decided we needed to try to get some photos of his eyes and then get a better look at his refraction (I think) – both of which required him to put his chin and forehead on contraptions. He doesn’t like to do this. It is not set up well for a child as big as he is to be in a mama’s lap to do this. He doesn’t lean forward well. He is strong. And stubborn. I was sweating by the end of it. That’s not even a joke.

But we got decent results for everything the doc wanted to see, and everything is looking as we know it does for him. The only bummer that came from this appointment is we had to start dilating drops again. Kiran was born with microcoria, which is a fancy way of saying he has small pupils. When we do the dilating drops every other day, we kinda train the muscles of the eye to bring his pupils to a larger resting place. At least that is how it worked last time – maybe 2 or 3 years ago – when we had to do them for a period of time. I am crossing my fingers they will do what we want them to in the six month period before we go for our follow-up. Kiran HATES eye drops. Like, I mean, pushed me away when I tried to hug him after they gave the dilating drops at the appointment…HATES. We are doing okay with it, but he gets really stiff, tries to push me away, and shuts his eyes tight tight tight. I have only given them three times so far because of the every other day routine, but I have already learned I just have to harden my heart and get it done as quickly as possible. It’s best for everyone. Not our favorite thing but just another one of those things we have to do.

Overall, as usual, Kiran was awesome. He wore his masks (We have to change them out every half hour because they get wet) like a pro and didn’t get too frustrated with me about them. He was brave and mostly cooperative and continues to show strength I can only begin to fathom. I am so proud to be his mama, all the time – but man, he makes me proud with how he handles these appointment days.

Fierce

Fierce: adjective: showing a heartfelt and powerful intensity.

I have decided this is my word for 2021. I am going to continue to approach my life with heartfelt and powerful intensity. This means loving fiercely. This means fighting for what is right fiercely. This means protecting my son fiercely.

I see living fiercely as the opposite of living apathetically.

There are many facets of what living fiercely must look like in this year. I know what I have ahead of me in certain areas of my life, and I will have to be a fierce fighter. But I have committed and will continue to commit to underlying all of the necessary fierce fighting with a fierce love – love for my son and what is best for him overall.

I am tired. 2020 wore on me, and turning the calendar page hasn’t changed much in my world. But I will be fierce in this way, too: choosing what is worth focusing on. Heartfelt and powerful intensity takes energy, and not everything is worth that. But as far as what is? I’m showing up for it this year.