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.