Too Big

You know those moments in life when everything just feels too big?  Too hard?  Too much?

I feel like the last two months have been that moment, but I’ve been really feeling the effects of it all in the last week.

Kiran and I had his waiver assessment meeting on Monday afternoon, and one of the questions I was asked is “Do you ever feel overwhelmed with caretaking?” I kinda laughed and said ” I mean…”


Yes, yes, yes, and another yes.  No one wants to admit that (except me, apparently), because no one wants anyone to think we can’t handle it.

It’s not that I can’t.  I’m handling it.  I’m over here killing it, if killing it means my son is alive, growing, progressing, and knowing he’s loved over here.  I got this.

But is it overwhelming?  Yes.

I learned something new last week about my brother’s accident, and it’s pushing down on me.  It shouldn’t matter, but I can’t shake it.  It feels too big.

I took a hard exam last night in my Anatomy and Physiology class, on the biggest unit we’ve had so far.  I am doing well in the class and I studied hard for the exam, but until I actually took it, I was paralyzed and feeling like I wouldn’t do well.  It felt too hard.

A kind man yesterday in the waiting room at Childserve spoke up, after I gave Kiran his water through his tube, telling me his daughter “had a feeding tube”.  We had a (always awkward, I suck at being a real person out in the world carrying on a conversation) brief conversation, and then I asked if she was able to get off the feeding tube or if she still had it.  “She died”

It is too much.

And I haven’t stopped thinking about this man.  Because yesterday, my capacity was such that all I could say was “I’m sorry.”  I meant it, but I know it’s not what I should have said.  I should have scooted over closer to him, and said “What was her name?  Tell me a little about her.”

Because I know.  I know what it means to have someone ask; I know what it means to be able to talk about our loved ones who are no longer with us.

I was reminded of something yesterday – even when a person knows what should be done in a situation, knows what the kind, compassionate thing to do is – doesn’t mean they have the capacity when the moment presents itself.

It helps me forgive others so much more easily.

Because oftentimes, life feels too big, too hard, like too much.  It’s just too damn much sometimes.

But I’m going to look for that man next Tuesday.  I am going to sit next to him and be completely awkward and say “Hi, didn’t we talk about feeding tubes last week?  I wanted to ask you….

What was your daughter’s name?”


Pirate Time

Our big news of the day: NO MORE PIRATE TIME! Kiran’s left eye has gotten stronger with the eye patching we have done over the last few months, so we were told we don’t need to do it anymore! I was not expecting this – at all – I assumed we would be told to continue. This is a relief! Kiran hates pirate time.

Kiran was an absolute rockstar patient today. He did way better than ever before with all of the tests and examinations they did – he even took a new acuity test, put his chin on the chin rest for a few seconds for the first time ever, and didn’t cry or squirm (much) when they did the dilating drops.

It’s almost as if he turned four and just became even more patient and good for the docs (He has always been a pretty darn good patient, but eye appts are the worst).

Dr D feels he is doing very well. It was determined the “cataract” we have been watching in his right eye is really just a bit of pigment. It isn’t blocking his vision, and this means it’s unlikely to grow (like a cataract might), so this should not need to ever be touched surgically. Always relieving!

His left pupil is really small but dilated well with drops today. Since it seems he is able to see well with it, she opted to not do eye drops at home (We have done these in the past to help open up his pupils – he likes eyes drops about as much as he likes eye patching). So thankful to not add any meds to our daily life.

All in all, his vision seems to be improving. She feels his nystagmus – that we still see from time to time but has improved a lot during his life – is neurological and has to do with gaining motor control over his eyeballs. He is improving with this too – as we know, because we can see the improvement.

All in all, it was a very good appointment with very good news. We will be back in July and will work on practicing with the chin rest concept between now and then so Dr D can get a good look at the inside of his eye with a special camera that requires some chin rest time. It will be a couple years before we do the ERG test, which will also give us some valuable vision info, because he just isn’t developmentally ready for that yet.

Today really could not have gone better. So thankful for my awesome little man. And SO thankful we are done pirating.

Acknowledging the Day

18 years ago today, my life changed.

I feel like I don’t have anything new to say about my journey with grief.  When the years keep passing, the journey doesn’t necessarily change much.  I wouldn’t call grief a constant companion – days do pass that I don’t think about Aaron at all – but it is something that has altered me permanently.

And it still hits you out of nowhere sometimes.

And still, every year around this time – and on this day – my body knows, even when my brain isn’t consciously thinking about it.  I become more emotional, more anxious, just more.  And then it dawns on me why.  Every.  Year.

Last year was my favorite November 7th.  Last year, I had the freedom and ability to really spend the entire day remembering Aaron.  I needed it.  This year, today, we travel to Iowa City for an eye appointment for Kiran.

But, thanks to an old friend who I caught up with earlier this week, I have been reminded to be kind to myself today.  And I am deciding to do that.  School can wait for tomorrow.  I can find the pockets of time in the day to just enjoy Kiran and be with my family – Dad is making the trip with us.

Life has to keep moving, but today also has to be acknowledged.  It’s never a perfect process (well, last year was pretty perfect), but it’s important to me to take the time.

I do miss Aaron.  I have become an expert at missing him.  I have missed him for an entire year more than I got to not miss him.  I have had to live my entire adult life without my brother.  It still sucks, no matter how many years pass.



Third Cage Session

Today is Kiran’s last day in the cage (universal exercise unit).  This is the third session he has had in this intensive physical therapy program, and he has always made really great progress in strength and confidence within his skill set.

This time has been no different, despite his 8-week session turning into only a 6-week session, due to life.  His evaluation was done yesterday, and he gained 11 points during this session!  This essentially means his need for assistance has gone down, across various skills, by a total of 11 points (Most of the skills targeted went down 1 assist point).

This is cause for celebration!  Progress has been made!

It’s a long road – and lately, it has felt so hard – but we journey together.  And continue to move forward.