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.

Just Say Hi

Story time was busy at the library this morning.  Lots of new faces today.  Kiran was especially vocal and excited during the stories, so I got to experience the usual curious stares.  Some felt not particularly friendly (these are always adults, never kids), but it is always possible I was feeling particularly sensitive.

At the end of story time, a mom walked right up to Kiran and me and started a conversation.  She asked if he liked story time, said that she had seen us there last week too, and I asked her name.  We introduced ourselves and our kids, talked about the origin and meaning of Kiran’s name, and just had a friendly conversation.

And it meant the world to me.

A part of me has to keep myself in check, because sometimes I literally want to THANK these people for approaching us.  For saying hi.  For not treating us like we have the plague.

Just say hi.

You can look at us and be curious and wonder.  You can stare.  I get that.  But then, come say hi.  Come get to know us.  Ask questions.

It reminds me, too, to just say hi.  I have to force myself, because I am the definition of an introvert.  But I know what it feels like to be in a room full of people and be so lonely I have to blink back tears.

That’s my challenge I am issuing to you, today.  When you are in a social situation, and you see someone who may be different or who is standing alone or just looks uncomfortable or overwhelmed, start a conversation.  “Hi” is a good starting place.

You might literally make their day.  Take it from me.

No Answers but Good News

Today was a hard day for me emotionally, so I am going to keep this update short.

Kiran’s heart function is showing no change from August when we last saw his cardiologist. Everything looks good.

He ordered some labs to check some simple things that might be causing the symptoms we are seeing: thyroid, iron levels, and some other screening. He thinks compression socks (so simple!) would help with blood flow to his lower legs and feet. Or perhaps starting a low dose of aspirin would keep blood flowing better and help with some of the color changes.

He is less concerned now that we are seeing redness on the left side as well. He thinks it may just be an autonomic disorder affecting his blood vessel dilation. Apparently this can occur in kids with developmental delays because their nervous system function is different due to how they are developing.

He still wants us to rule out other factors so feels the follow-up with a neurologist is still warranted. The neurologist will decide if another brain mri and chest mri are necessary to rule out something else (like a tumor; I wish he’d stop saying that word) causing nervous system dysfunction.

It was a long day that ended in a blood draw – not Kiran’s favorite at all but he was an excellent patient through all the poking and prodding today. Kiran wasted no time falling asleep on the way home.

I am relieved – and still baffled. And tired.


I have too many balls in the air at the moment.  I feel like they are flying all over the room, and I am running as fast as I can to get to each one before it slams into the ground.

I can’t juggle.

I am doing my best, but my anxiety might win this week.  I am finding small moments and small ways to practice self-care to try to mitigate the chaos, but the truth is: There is just a lot, this week.

Tomorrow, we head to Iowa City in the morning.  As of this morning, it just became a three-appointment day.  We will do a vascular test first, followed by an echo, followed by an appointment with Kiran’s cardiologist.

I both want answers and am praying desperately there are none to be found with his heart.

And unrelated to Kiran, other than my anxieties will be shifting back and forth between two of my favorite boys this week, Eric has surgery on his broken ankle on Thursday.  He slipped on the ice and broke it two weeks ago.

The funny thing about life is Tuesday morning two weeks ago, the morning after his late night ice fall, I was feeling very rundown.  Caregiver fatigue is a thing – burnout too – and for whatever reason, I was just seriously experiencing it this month.  And then I got the text from Eric that he needed to go to the ER because his ankle was feeling more serious than a sprain.  And my caregiver duties multiplied.

I’d like to say I’m handling it all with grace and Wonder Woman like strength.  The truth is – it’s been a bit of a shitshow these last couple of weeks.  I have not been my best self many times, mainly navigating with Eric this new territory where he needs help (and HATES that and doesn’t want to ask for it) and me wishing I could help more but understanding (finally) my limits.  I travel between our homes frequently as it is, but it’s been hard, wishing I could somehow split myself into two people and be everything for both of them.

Thankfully, his daughters, their boyfriends, and his parents are all stepping up too and helping.  It’s a family affair.  But it’s still been hard on him – on me –  on us.

And it’s hard to have concerns with Kiran’s health in the midst of this new territory we are navigating.  Kiran has been stable for so long – I had grown quite comfortable with the only stressors being his daily care needs and therapy progression.

School starts back up in one week.  January was supposed to be my month to relax.  I had a list of things Kiran-related that I wanted to catch up on – some have been pushed to the wayside but most have been or are getting accomplished.  But I also had plans to treat myself to some things – a pedicure, a massage – and to have a day or two where I could just do whatever I wanted.  Those days haven’t happened – those treats feel hard to fit in.  I’m not ready to jump back into school stress – that all feels way too huge with everything that is happening.

But next week will be different.  This week shall pass, and hopefully, next week will feel more manageable.

Maybe some balls will fall.  I’ve survived it before.


Even If

When you learn, at age 17, that bad things DO happen to you – that life is not forever, and the natural order of things is flipped on its head – that car accidents can happen and brothers can leave this world without even saying goodbye –

And you learn, at age 31, that your ridiculous idea of “I’ve been through enough loss” doesn’t hold weight in the real world – that diagnoses CAN happen to your baby – that your life is not going to be of the white picket fence variety –

I think a part of you never lets go of the fact that the worst is possible.

It is tucked back in the deepest darkest corners of your mind – shielded under layers and layers of both love and let’s-get-through-today.

But it’s there.  That nagging worry.  That precedented truth.  Bad things happen.

I clutch that worry sometimes like a shield.  If I can just prepare myself for the worst possible outcome – I tell myself – then my heart won’t shatter as completely if it comes to be.

It is the realist in me.  I had never vocalized it until last night, but a part of me truly believed Kiran would not survive his open heart surgery.  It just made sense to me, that I would have to navigate that loss.

Just like it makes sense to me, now, that something must be seriously, gravely wrong with my boy.  Cardiology or neurology is going to find something serious causing these new crazy symptoms – I keep thinking he will receive a terminal diagnosis.

I clutch the worst-case-scenario as if I’m marked.  A target for tragedy.

And I have to let go.

Giving credit where credit is due, an image I shared on my facebook page the other day from Sarah Lango – Gracefilled Growth – hit me so hard.  Part of her words – “She let it go – proclaiming in one bold act, ‘God I know you can, but even if you don’t.'”

The “even if” is the hardest part.  I am scared to let go and take my armor down.  Built with past loss, anxious thoughts, and the most terrible future unfoldings I can imagine, it provides some sort of odd comfort to me.

Letting it go means opening myself up to feeling this journey at full capacity.  It means recognizing I can’t control anything, even with the most elaborately built shields.




Unilateral Redness

Kiran likes to keep us on our toes.  Always.  Can’t get too comfortable over here.

Over the course of the last few weeks, he has developed a new symptom for us to wonder about: On the right side of his body, noticed after physical activity or overheating, he is getting periods of redness on his cheek, ear, arm, and hand.  Not always all of those areas but always on the right side.  The spots are warm to the touch, blanch normally, and eventually return to his usual beautiful skin color.

Since due diligence is always the name of this mama’s game, I have kept on top of it.  It was first noticed at school after physical therapy, about a week and a half ago.  I got a phone call from the nurse, we discussed it, and we chatted about it a little more in person the following morning.  She was baffled – as was I – but after I noticed more of it that same first afternoon and had another incident over the weekend with the same symptom, I called and chatted with his pediatrician Monday.

She didn’t seem overly concerned since it doesn’t seem to be bothering him and no other symptoms are present.  Her hypothesis – a good one – was that perhaps his heart physiology made it so more blood flow went to those areas on that side.

Except it just started happening – but he *is* getting more active.

Then later in the week last week, I noticed it again – and school noticed it the following day.  Time to email Kiran’s cardiologist to see if our working hypothesis holds any weight.

It doesn’t.  He is concerned enough that he feels we should follow up with a neurologist and maybe move forward with an MRI of head and chest to make sure everything is okay.  There are some syndromes that can cause this uneven, one-sided flushing, due to nervous system damage.  And some of the things that cause that damage are quite worrisome – like masses, tumors.

I am not getting ahead of myself, but I am continuing to do my due diligence.  Dr R is putting in a request for a neurological consult appt with the neurologist Kiran saw after his first MRI in 2018.  He said he would request we be seen in the next four weeks but can’t guarantee that.

And then we go from there.  Because this journey just keeps pushing us into unexpected territory, and there is no way to plan for what life might throw at us.  I hope it turns out to be nothing – just the way Kiran’s body is working right now.  But if it’s something, it’s important for us to know.  So.  It’s a long road ahead, but we journey together.