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.