Influenza A

This illness has solidified my suspicion that Kiran has never dealt with flu before. It’s rough. He’s had his flu shot already this year, and he’s on Tamiflu due to his underlying heart condition. Still, he’s waking several times a night, coughs are rough, energy low, and you can just tell he’s not feeling well. I’d imagine some of the minor body aches I am feeling today (he always shares with his mama, sweet boy) is nothing compared to how he’s been feeling.

He remains fever free, and he is very slowly – more slowly than I’d like – seemingly getting better. He requires fewer doses of Tylenol to stay comfortable and is waking up fewer times each night (twice last night versus four times the night prior).

It still amazes me how much he has changed from when he was an infant. He never wanted physical comfort back then – if he was frustrated or not feeling well, he wanted space. Now, he wants to be attached to me and pulls me closer and closer.

I’m touched out. I don’t feel 100% myself. Today has been particularly difficult because of the logistics in our house – people are still in and out all day long, working on the bathroom; the poor dog who had to be kenneled while bathroom was being worked on has way too much energy despite a few walks today; Chef Eric is as busy as he’s ever been preparing for all the Thanksgiving meal items he’s sold.

I am still thankful. Both can be true. I am completely overwhelmed and exhausted – and so thankful. I am thankful pneumonia hasn’t developed. I am thankful he is able to recover at home. I am thankful we are together. I am thankful I worked so hard to get to a place with school that I could just focus on Kiran and his recovery this week.

I have had a couple of friends drop off little care packages – toys/activities to keep Kiran entertained, and even some chocolate/flowers for me. I am humbled and thankful people think about our family. I am realizing the friendships I am building are becoming the ones I have always hoped for.

This fall has been a trying time for our family. It seems, though I disagree, I needed to strengthen my resilience by practicing. A LOT. I am struggling with living inside survival mode for so long again.

But I know this will pass. It always does. There will be the other side. No matter what, I’m still standing. My family is together, and we are determined to build the life we want, despite the unexpected circumstances we have found ourselves in.

And I haven’t dropped out of grad school. Yet. 😅

It’s a long road ahead, but we journey together. If the last few years have taught me anything, it’s the importance of who you invite along on your journey – and it’s equally important to pay attention to the ones who only join when the path is easy.

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Practicing Resilience

Seven years ago, at about this time, I was having contractions. A lot of them. With little break in between. For hours.

I didn’t have time to really dwell on my fears when I was actively in labor, bringing Kiran into the world. In quieter moments during my pregnancy, I had ample time to ruminate over the “what ifs”….

But in those active moments, inside contraction after contraction, all I could focus on was that moment, getting through the pain.

It seems a good metaphor for my life, lately. It has been yet another season of contraction after contraction, painful moment after painful moment, being pulled through a lot of darkness. All I can focus on is surviving the moment I’m in.

Last night, I pulled myself out of that survival mode as I reminisced about the drive to the hospital to be induced to have our baby boy. And I remembered the overwhelming fear. And I acknowledged – internally – that I still carry fear in my heart when it comes to this little boy.

The difference is living for seven years as his mama and taking on all the experiences that has entailed has equipped me to work through the fear and take on the painful fight. Again and again. Wave after wave comes at me, and I just keep pushing.

Resilience isn’t something you have; it’s something you practice.

Lightning Rainbow

Seven years ago, I was being induced in a hospital bed. Scared out of my mind, with little idea of what was ahead.

On the ride to the hospital, about two hours from home, we were driving through a storm. The sky was simultaneously lit up with lightning as a rainbow appeared. Kiran’s dad said it’s the kind of night superheroes are born.

He was right.

Tonight, when I showed Eric the picture of the sky from that night, he said it made sense. The lightning signifies the challenges Kiran faces in his life. The rainbow? His personality, his attitude, his demeanor – always. That boy brings all the colors to our lives. Every. Single. Day.

I can’t believe we’ve had seven years of color-filled days.

I am the luckiest mama.

Disappointment

What a privilege it is, that I get to hold all your disappointments. And you don’t have to.

Kiran was supposed to go with his first grade class to a pumpkin patch today. But he has pneumonia, so he’s missing it.

And I am SO disappointed he doesn’t get that experience this year.

But he has never given any indication that he feels disappointment. He is so present in the moment he’s in. So he doesn’t have to feel it. But boy, I do!

And that’s okay. This version of motherhood is different in this way. The positive is I don’t have to watch my baby boy feel disappointed. I don’t have to help him navigate that – at least not yet. Maybe someday.

But the negative? I hold it all myself.

But, watching his body struggle through this illness, I would take it from him without hesitation if I could.

And so, I am happy to take the disappointment. It is a privilege I have as Kiran’s mom.

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!