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.

 

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.

 

 

 

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.

I keep thinking about our recent (and first) family vacay to St. Louis.  It had all the components a family vacay should have.  It was the first time we had all – Eric’s girls, my boy – gone away for a weekend together…even throwing a couple boyfriends into the mix.

I have reflected a lot on the time, because my thought of what a vacation is has changed drastically with Kiran.  A vacation is not relaxing for me.  A vacation involves doing everything I do for Kiran’s care at home…but harder, because we aren’t home.  It involves navigating inaccessible spaces and packing lunch bags full of syringes and trying to think about everything I could possibly need if we are out and about all day.  It’s imperfect and messy and stressful…and when I get home from said vacation, I desperately need a vacation….

But it’s so worth it.  Because we are out, living.

This particular trip reaffirmed that I need to stop feeling paralyzed about figuring out certain aspects of Kiran’s care.  He’s getting bigger.  Accessibility is a thing I need to concern myself with.  Being able to travel and change his diaper (I’m going to buy a portable cot!) and have him sleep safely (air mattress with raised sides already purchased; pop up tent that fits on a mattress will be next step in a year or two)… all important things.

My number one priority is making sure Kiran does not experience life from a bubble.  He is not going to sit on the sidelines.  It takes some planning and some equipment, a lot of energy and some back-strengthening exercises …

But it’s worth it.  He gets to be miserable with the rest of his family up in the hot, sticky arch in St. Louis, being herded around like cattle.  He gets to be the one family member not disappointed in the new aquarium, because he really digs the electronic fish production happening on the ceiling of the lobby.  He gets to skip naps and watch way too much football and lick ranch in every flavor off a french fry.

We are living.  We are a family.  It’s not easy, and I am so often exhausted and sore and overwhelmed.  But I am grateful.  And I would do it all over again, even crammed in the minivan with imperfect sleeping arrangements for Kiran and the prep it took every morning when I would have rather been sleeping in or enjoying sitting around.  I’d take the syringe malfunction in the restaurant that was the last straw of a stressful, disappointing day…I’d take the tears in the bathroom when I excused myself to “change Kiran’s diaper”…I’d do it all again.  Because it’s real.  It’s life.  We are living it.

I am so lucky to be living it with this amazing little boy.  May I never forget.

 

This year is starting with illness.  The holidays and our St. Louis trip really wore me down, and Kiran can only sneeze and cough in my face so many times before I’m bound to catch his cold.  I continue to be amazed at how much of a trooper he is, given how he must have been feeling during our trip.  That boy is tough as nails.

My facebook post regarding the new year included the following: May 2020 bring enough joy to balance the sorrow, enough peace to balance the chaos, and enough experience to facilitate growth.

I’ve experienced many years at this point, so I think that’s a pretty safe wish to bestow upon others.  Because the year will bring sorrow and it will bring chaos – and, like it or not, it will bring experience.  How we choose to face these things matters.  I am learning that more and more.

2020 comes with a lot on my plate.  I feel like we are at the cusp of so many things with Kiran – there is so much to figure out at this point.  Accessibility for him is going to be a big focus of mine this year.  He is growing and changing and requiring the same level of care.  In order to keep giving him the experiences in life I want for him, I have to adapt.  I have to take care of my own body – my back, especially – so I can continue to lift him (and his wheelchair), because it’s getting harder.  He needs an accessible home.  I need to start looking to the future for other equipment we may need in the home, because all of those things take time.  Insurance takes time.  And he’s growing and growing.

It’s daunting.  I find myself paralyzed with so much of it.  So my focus, at the start of this year, is to just take it one step at a time.  But to keep stepping.

You can’t get anywhere if you aren’t taking steps.  And the road is long.  And it matters.