Day 60

I have been doing a good job navigating this current virus situation without taking up Kiran’s medical team’s time. This has been somewhat intentional on my part.

I don’t need them to weigh in, necessarily, at this stage of the journey.

Let’s face it: I am GOOD at the restrict and protect stage.

I am less good when it comes time to think about adding risk back in. So today, after my processing yesterday and some guidance from a friend, I decided it was time to start some conversations.

I tend to turn to the same two people – Kiran’s pediatrician here in town and his cardiologist in Iowa City. Both are thoughtful, even-keel professionals who have always acknowledged and respected my place on Kiran’s care team.

Here’s what really threw me for a loop and made me think it was time to reach out: Kiran’s preschool teacher, who is so good at caring about Kiran and keeping his medical needs at the forefront of her mind, mentioned to me that all it would take is a note from his doctor to get homebound services started in the fall if necessary.

My knee jerk reaction was to panic. And then as I calmed down, I started feeling like that would not be a necessary step for Kiran. IF school reopens in brick and mortar in the fall, it will likely be a risk worth taking to have Kiran back in the classroom with his peers.

Both his cardiologist and pediatrician agreed with that, at this point. From a medical risk perspective, they would fully support sending Kiran back to school if that is what we decided was best for our family.

Of course, one of them said “If schools open up in the fall” and one of them said “Schools are going to close down again. I don’t see how they couldn’t. So I think that decision will ultimately be made for you.” ….

Also, from both of them, validation was received for the plan Arif and I already agreed to – they both feel it is wise to wait until mid-June (or even end of June) before we start doing anything different with Kiran. We stay the course so we can watch viral activity now that things are opening back up. And we got validation for the plan I proposed as far as how we would approach re-entry – namely, appointments first (medical, therapy, dental) and letting close people back into our lives in a non-virtual manner (Eric). We would still avoid taking Kiran to stores or doing any unnecessary activities (including spending time with people who would bring in a lot of risk) as we continue to stay informed. A lot of wait and watch. Watch and wait.

I feel less crazy. I am not sure how many times it will take before I realize I can – and should – trust my well-thought-out instincts when it comes to Kiran’s well-being. Although I’m not particularly happy it will be another 30 days – and even then, only if viral activity is finally decreasing – before we get to spend time with Eric.

This sucks. And honestly, I have questioned at times if I was being too restrictive – too protective. Turns out, I was just being smart. I was just doing what was in Kiran’s best interest, to keep him healthy and safe … as much as that is in my power. And that’s what I will continue to do.

Here’s to another thirty days ………

Bubble vs. Abundant Life

I am currently living with great fear.

As a mother, my instinct, even when Kiran was still growing inside of me, was to protect him. Due to his medical conditions at birth, I had to go to greater extents than most to make sure he stayed safe and healthy. He was born late October – peak flu season – and sent home with me as a newborn with a critical, unrepaired heart defect.

Despite my best efforts, he caught a cold – the common cold – at around two and a half months old. It required a week-long hospital stay, because he needed oxygen to make it through.

I know I can’t protect him from this virus indefinitely. I know, at some point, we have to re-enter society. It has never been my intention to keep Kiran inside a bubble – He and I have always chosen to get out in the world and live a full life, despite the obstacles.

Risk is a part of life. I get that.

I still feel, for my family, it’s too soon.

And I do worry that it will become harder to exercise my “freedom” to stay home. Now that Iowa is opening back up, I worry that some of the services businesses have provided that have allowed us to stay safely at home will no longer be offered.

I worry I will be required to make decisions before I am ready. And honestly, I have no idea how to even make these decisions.

I am keeping myself as informed as I can. None of this is political for me. This is about protecting my family, period.

This time has not been without sacrifices. I agree that this is not a sustainable way to live, long-term. At some point, I’d like to see my boyfriend again. But the time is not now. Not for us. So we will keep doing what we are doing. For now.

And we will take our own “phased-in approach” as we feel more comfortable doing so. Though I feel I will never be comfortable. My fear response right now is absolutely to keep Kiran in a bubble forever. To keep him safe.

I wanted that the last days of my pregnancy. He was safe inside me; he was getting what he needed. I couldn’t guarantee his safety outside the womb. But he had to have a life. And he will have to have a more full life than what we’ve been living these past 59 days.

It’s not time yet. Once it is, I’m going to struggle. But I’ll do it anyway.

It’s a long road ahead, but we journey together. This journey is not as straightforward as everyone seems to want to make it. There is no right answer right now. These decisions are HARD. I am paralyzed by them.

Today, I’m just gonna hang on tight. The time will be here soon enough when I have to let go.


No Regrets

Today marks 51 days since I have seen or spent time with my boyfriend in person. It seems quite a few people don’t understand exactly why we have made this decision. Or they offer helpful advice on ways we can safely spend time together – believe me, we have considered every single one.

The truth: It sucks. The truth: It’s an important, intentional decision. The truth: I have lived inside my brain for 36 years, and I know how it works.

My dad is an essential worker, so he still has to go to work. He is already a risk factor for our household. Because he is already out in the world, he is also our designated grocery getter; Mom is working from home and I am schooling/caregiving from home, so we haven’t been anywhere these 51 days.

Eric is also an essential worker, so he would bring extra risk where there is already risk. And, as callous as this may sound, it is unnecessary risk. I can’t mitigate the risk my father brings into the home, because Kiran and I are lucky to have had this home as our safe place these last three years. But I can choose to not add MORE risk by physically distancing myself and my son from Eric (and anyone else – it’s not like I’ve seen anyone these past 51 days).

It has proven to be a good decision. I won’t share more about that.

What I will say, about how my brain works, is this: In order to live with myself, I have to *know* that I have done everything in my power to keep my son safe and healthy. If he does contract this virus – and heaven forbid, the worst occurs – the only way I would be able to live with that is if I know I did everything I could to protect him. It’s the same reason we traveled all the way to California for his open heart surgery, to the most experienced surgeon, the one who created the surgery Kiran needed. If Kiran didn’t make it through open heart surgery there, I would have known, without a doubt, I did right by him, by taking him to the best. If Kiran doesn’t make it in this life, I have to know that it’s not because I was selfish and just had to see my boyfriend during a pandemic.

It’s not forever.

But for now, we make the hard, safe decision. And as the information shows us it is safe to do so, we will make a different decision. And Kiran and I will hug Eric for a really really really long time.


Well, Crap

This seems to be my first sentiment of the morning, every morning, as I wake to another day that looks similar to the day before and the day before that and the day before that and the….

We are all in the same boat, though the storm is likely hitting us differently.

But this is actually a blog update about poop.  I know, you’re welcome.

Since Kiran was diagnosed with constipation and put on a Miralax clean-out, some things have happened.  First, I think we have finally landed on the maintenance dose of Miralax he will need daily for the next few months, to get his body to a place where he doesn’t need the help anymore.  Both his pediatrician and GI doctor had good discussions with me about what this does to help put his body in a position to expel waste without needing the Miralax, and we have a solid plan in place to get him off the Miralax as well.

Second, I have been in touch with the dietitian we see at Kiran’s feeding clinic about the new blend recipes I’ve been working on to incorporate more iron into his diet via food (instead of adding a supplement, which may exacerbate the constipation issue).  She praised my recipes, offered a few more iron-rich food ideas, and couldn’t really answer the one question I had about decreasing volume in the couple of my recipes.  It was good to be validated and know I am on the right track in providing Kiran’s nutritional needs – I certainly spend enough time on researching, planning, and blending!

Third, both doctors I spoke to regarding the last step of Kiran’s digestion encouraged me to regularly (once or twice a day) have him sit on the potty.  Now, this is not a new thing.  Especially when he had instances of struggling to go or having not gone for a day or two, I would incorporate sitting on the potty as an extra help so he could go.  It was so infrequent and didn’t feel like a priority to add to our already busy daily schedule, so I recently gifted his old potty seat.

After getting this recommendation and attempting a potty-sit experience with me fully supporting him so he didn’t fall in, I realized neither of us would be comfortable – at all – in that scenario.  I found a really nice potty seat on Amazon that has a little back rest and handles on the side.  Today marks day 3 of us using it, along with his bathroom stool to prop his feet on, and he seems very comfortable.  In order to maximize comfort with it – and also the time we currently have at home – I have had him sit on the potty three times a day: after breakfast, after lunch (when he receives his Miralax dose), and before bed.

If you’re still reading, you actually got to the good part.

For the first time ever, Kiran went in the potty today after lunch!!!!!

He has never gone (1 or 2) in the potty, despite having had pretty good exposure to sitting on it.  And I almost didn’t put him on, because he had already soiled his diaper before we wrapped lunch up and got down to the bathroom.

I think it surprised him as much as it surprised me, but he didn’t seem scared or worried about the experience.  He did decide he was all done sitting on the potty shortly afterwards, however.  He let me know by leaning forward so far, I had to catch him as he fell into me.

I am excited about this, but probably not for the reasons many of you are thinking.  I am sure the first thought (because I know it would’ve been mine) is “Yay, now you can get him potty-trained!”

The truth is – as much as it has been hard to admit it and I feel a need to justify it – that is not a goal I have for Kiran right now.

I wasn’t ever able to fully put into words, so I am going to steal (summarize) words a friend told me yesterday, that her child’s doctor had shared with her: If he is unable to communicate to me that he needs to use the potty, but I am able to incorporate potty time into our day and keep him clean/dry, who have I really trained: him or me?

And quite frankly, right now, I don’t have the capacity to be trained.  This is not a priority I can – in good conscience – add to our already full days.  What matters to me with this is that it may help his body effectively expel waste more comfortably.  I can commit to once or twice a day (Because let’s be honest, 3 times a day may not be realistic after this period has passed and we are back to our regularly scheduled life), but I don’t think I want to be constantly sitting him on the potty in an attempt to get out of diapers.

Do I hope he gets to a place cognitively/developmentally where he is ready to be potty-trained?  Yes.  Do I think he is there right now?  I don’t.  And that is what it is, and I have accepted it long ago.  I have accepted diapers might be lifelong for him.

Today’s celebration had nothing to do with getting out of diapers or starting the process of potty-training Kiran.  Today’s celebration had to do with pain-free, effective poop!!!!! – with the added bonus that it was all much easier to clean up because he happened to be on the potty when he went!

I don’t care who you are, that’s good shit! (I had to. Forgive the language.)

Today, I am angry.  I am scared.  I read an article this morning about how hospitals in the U.S. in the hardest hit areas are already overloaded.  In New York, no room in the morgue, so bodies are being held in refrigerated trucks.

Are you taking this seriously yet?

I can no longer breathe through that fear and tell myself it won’t happen here.  In our country.  In my state.  Because it’s happening in our country, and my state, in my opinion, isn’t taking it seriously enough.  And personal responsibility is largely lacking in our society as it is.

I told you I was angry today.

My biggest fear, I will share again.  It will hit our area hard, and our hospitals will be beyond capacity.  Life and death decisions – who to save, who to not save – will have to be made by medical standards.  One glance at Kiran’s medical history, I fear that if my son catches this or anything else and needs respiratory support, I will get a “sorry” ….

And I will have to bring my son home to die.

Even I thought that was an irrational fear when I first shared it – what – a week ago?  I keep watching the irrational become more and more probable, and I am angry.

Balance Beam Wavering

It is like I was just starting to understand basic algebra, and life threw me into an advanced calculus class.

I was starting to wrap my head around ways to find time and take part in self-care activities.  I was starting to achieve some semblance of balance with school, work, Kiran, friends, and self.  And I was working steadily toward an even better balance.

And now, this.

I am trying still.  I have to try.  But I’m overwhelmed and frustrated and tired.  Already.  I feel like the frustration and anxiety and stress builds like a physical pressure – builds and builds and builds – and I fear it will eventually spill out in unproductive ways.  So I take walks and I read uplifting snippets of books and I check in with my people.

I am doing my best to find a new balance, because it won’t be the same as what I was building.  But I have to keep reminding myself that it will also only be temporary.

This too shall pass.

I may not ever fully grasp advanced calculus but having taken the class, perhaps basic algebra will be a cinch.


Breathing is Optional

Being still is hard.  Staying calm and attenuating anxiety is hard.  I am reminded today of what my closest (first time around) college friends and I would say when we were going through a particularly stressful time: Breathing is optional.

Of course, it’s not.  We have to keep breathing.

I am struggling with anger throughout this journey.  I started taking this seriously – and rightly so, as my circumstances with Kiran warrant more caution – days before others did.  I have been about 3-4 days ahead of recommendations passed down by the federal and local government.  I have watched so many people in my life go from making jokes and talking about how it was being blown out of proportion or a political agenda…to understanding that this is real and should be taken seriously.

But I still see others who aren’t fully getting it, and I struggle with being angry at them.

I don’t want to be angry.  What I want is to be a light and show love.  I want to be an encourager.  I don’t want to use fear as a tactic to get people to understand, but rather, I want to use love to point them to what we should be doing right now as a community.  What we NEED to be doing right now.

But I struggle with wanting to shake people.  I want to shout at them: DO YOU KNOW WHAT IT’S LIKE TO SEE YOUR CHILD INTUBATED?!!  I almost shared that several times on facebook this morning.  And it’s okay to share that.  I just want to start being really mindful how I choose to get my message across.

It’s hard.  Fear and anger are very real, very justified feelings right now.  For everyone, globally.  This isn’t about just Kiran or me or you.  This is about all of us.  We are facing something we have never faced before, and we are all scared and frustrated and grieving.

I have hope we will come together and learn from this.  I have hope that others are coming to a greater understanding about the importance of making accommodations for and caring for our vulnerable populations.  That we are realizing the importance of our healthcare workers, cleaning crews, and grocery store clerks.

We are all in this together, and how we approach all of this matters.

I am angry.  A lot.  I am working through it every day.

I am scared.  Every minute.  I have to dampen that so I can get through my day.

I am trying to choose love.  I am trying to learn.  I am trying to show grace, not just to everyone else…but to myself.

It’s a long road ahead – and we don’t know how long or winding this road may be – but we do journey together – creatively, virtually, from-a-distance.  Together.

Keep breathing.

My Biggest Fear: Coronavirus Edition

I have been doing a very good job of staying calm and rational this week.  I have kept myself informed and educated, I have vetted the sources where I am getting my information, and I have been diligent in not adding to the panic and hysteria that is unnecessary in the face of the uncertainty we are now living in.

But this morning, during online worship, all of the calm and rational inside me finally broke open, and my fear spilled out.

Truth: I am scared.  I am worried.  My anxiety is through the roof, and I have no perfect answers on what I should be doing right now to ensure my son’s safety.

At times, I am angry.  I want to shake people.  I want to make them understand the reality of what’s happening in our world right now.

I can’t make decisions for anyone else.  I can’t control this.

I am scared to even share my biggest fear in all of this, but I will.  I don’t want to, because I don’t want to be accused of overreacting.  But this is my blog about my son and our journey, and I have always been honest about my feelings.

In Italy, right now, health care workers are forced to play God, in a way, and decide who deserves to live and who has to die.  They do not have enough ventilators and other equipment to help everyone who is critically ill.

I know the information out there is not indicating that children are getting this or suffering huge complications from this virus; I have been watching specifically for that data.  I also know that Kiran has 2 of the 10 underlying conditions that make this virus more serious and even deadly.

Do you see where I am going with this?

My biggest fear is that the United States will end up in a situation like Italy.  Our healthcare system will not be able to keep up with the number of critically ill patients that are infected with this virus, and they will be forced to make decisions on who will get the ventilators and other life-saving treatments.

And I am afraid that if my son contracts this virus and has complications, his life will not be deemed valuable enough to be saved.

So if you think my actions in the past week or in the weeks to come seem overprotective or overreactive, just know I am trying to balance all of the information while carrying this deep fear.  Also know that I don’t care, and this mama bear will, as always, do whatever it takes to protect her son.


Rollercoaster Road: Defeated Edition

Real talk: I am feeling pretty defeated at the moment. Tapped out. Exhausted. Not able to control or fix. Embarrassed.

But really, just defeated. That’s the best word right now.

I should say: Kiran is fine. We really didn’t get any big news today at the neurology appointment. She suspects autonomic disorder but is puzzled with its one-side-at-a-time occurrence. She does not suspect a tumor, which is, in itself, a huge relief.

But she did feel his stomach for about 100 years and kept saying “It’s probably nothing” until I finally said “Ok, it’s probably nothing. But what could it be?” Well. A tumor. So we did get to spend part of our morning worried he had a tumor, and we got to have an ultrasound and then an x-Ray.

What she felt? Stool. He’s backed up quite a bit. It is likely because of the recent increase in iron, despite trying to be very careful by also increasing the “p” foods and periodically using oils as softeners.

I am throwing up the white flag. I feel like I have barely been able to keep on top of his poop rollercoaster before we had to deal with any sort of dietary/nutrition issues. So I am currently waiting for GI to call, and I will do whatever they recommend. I have already emailed the dietician and asked for help with skeleton blends so I don’t have to try to think through this alone. I’m not sure why I have insisted for so long to fight this battle without medicine or help from the dietician.

But, like with everything, it’s a journey. It involves learning and growth and surrender and defeat. A whole lot of overwhelm and anxiety. Grief. Joy. Relief.

The resident was rattling off Kiran’s diagnoses to the neurologist, and I was beginning to have to hold back tears. So I turned to my son and said “just all the things that make you beautiful”. And unique. This random redness may also be added to that unique color-me-baffled list.

I should have known answers wouldn’t come when the first thing we heard was “Well, you’re here for an interesting symptom.”

Yes. Yes, we are. With a beautiful boy.

The road feels too long and too rough in this moment, but I was reminded today I don’t walk it alone. Not just in the way I always know – together, alongside this beautiful boy and all the people who love him so dearly – but also with the medical professionals. I can let them in – the GI doc and the dietician – I can stop holding that piece so fiercely as my own.

Because, quite frankly, I need the help. I need the break from the rollercoaster. At least this one.