At least in our world, certain therapies or goals tend to take front and center at different times.  I find it nearly impossible to focus on everything at once, so there are some days or weeks that feeding is a big priority, and some where it takes a back burner.  I simply don’t have enough hours in my day – nor enough space to worry in my brain – to always have it be at the forefront.

I feel it’s been on the back burner for awhile.  The focus was very much on the preschool transition for quite some time, and it has taken a little bit to get into the swing of the new schedule.  And the swallow study – well, that was a setback – sometimes grieving where you thought you were headed means you hide from the issue for a little while.

After feeding therapy last week – and after Kiran finished a jar of carrots between Tuesday’s dinner and Wednesday’s lunch – I decided to focus and take notes this week.  Kiran has been doing significantly better and eating more when motivated (dinner tends to be the very best time; breakfast the worst; lunch and snack vary with how tired he is)…but this week, he has simply rocked it!  I am sure my focus and willingness to really put forth the effort at every meal we practice oral has helped – but man!  This week, he has finished 2 jars and 4 pouches of food.  This is HUGE – I haven’t had to throw ANY  food away this week!  And twice – both at dinner time and both with the same preferred food – he finished an entire pouch in one sitting!

He has also been accepting drinks from his cup a lot more consistently this week, and that was definitely something I worked on a lot with him.  We are back on nectar thick water, due to swallow study results, and I haven’t been working on water as much as I should be.  This week, I really put my brain in a better place about it, and he has gotten some really good practice with it.

It hasn’t been without issues.  He has had a couple instances of coughing fits – and a few short, quick coughs as well – but overall, he has done really well.  7 of 12 meals went off without a single cough!  And every meal that he has accepted food, he has been very eager for the next bite.  It has actually been really fun this week to feed him.

I know – from Kiran’s entire history and especially his feeding history – that this may not mean we have actually crossed some threshold and gotten to the next step.  I know that he might start refusing food or struggling more, and I might be right back to throwing away expired food tomorrow.  But I have also learned to bask in the victories.  He has had such an awesome week, and I am so proud of him.

And I cautiously hope this is the start of him really enjoying food and wanting to experience it.  We have a ways to go with his skills, but motivation will be a key factor in propelling him to where he needs to be.

I just finished reading the book House Rules by Jodi Picoult.  And even though Kiran doesn’t have Asperger’s – or autism at all – when I read this paragraph, I think I might have actually gasped:

“This is what you can’t explain to a mother who doesn’t have an autistic child: Of course I love my son.  Or course I would never want a life without him.  But that doesn’t mean that I am not exhausted every minute of the day.  That I don’t worry about his future, and my lack of one.  That sometimes, before I can catch myself, I imagine what my life would have been like if Jacob did not have Asperger’s.  That – like Atlas – I think just for once it would be nice to have someone else bear the weight of my family’s world on his shoulders, instead of me.”

It’s like a summary of what I am always trying to write about.  This is what I am trying to help everyone understand.  It’s why I keep coming back to this blog, to write and write and write some more.  Letting the thoughts and emotions out of my body and onto this screen helps lessen that load, just a little bit.

When I have a particularly demanding week – or I’m sick and have to also think about my own needs in addition to Kiran’s (I am still not great at doing that unless it’s put in my face, like with illness) – I often wonder how much longer I can do this.  And I always feel guilty – and silly – even writing about the exhaustion.  It always seems like the weeks I just want to coast – I just NEED to coast – are the weeks I have to fill out disability reports; and Iowa City calls to reschedule an appointment already on the calendar so I have to call them back (remember how I hate all the phone calls); and we decide to take Kiran into the walk-in clinic because we are finally wondering if his eye discharge has been going on too long that it might be something more serious (it’s not); and I have to call the medical supplies place three times just to (maybe) get our first diaper delivery (I’ll let you know, after I call the third time tomorrow); and his private therapists all have days off so two weeks in a row, we go to Childserve three times per week instead of two; and the child life specialist in town needs a callback to get more info on Kiran’s medical history so she can explain to the kids in his preschool class all about the cares they see happening daily; and our healthcare providers need to meet for his annual levels of care assessment; and I just wanted to coast to Christmas.

But I continue to put warm compresses on his eyes, after thoroughly washing the cold germs off my hands, and I put gloves on before I do the tear duct massage.  Because it’s working.  The eye gunk is clearing out.

And the rest of it, too.  I’ll make the three phone calls I have to make tomorrow; we will attend every therapy and assessment appointment we have every afternoon this week (save Friday, thank God for a free afternoon!).

And I will keep wondering how long I can do it, given the exhaustion.  I will be thankful every time the helping hands show up, but ultimately, I feel the weight of it all falls back to mama’s shoulders.  And even three years in, with so many experiences I never dreamed I’d have under my belt, I do not feel equipped for this job.

I seem to be running on fumes.  Literally just trying to make it…I don’t even know my destination…by coasting.  Reviewing Kiran’s medical history and diagnosis list took a lot out of me emotionally and mentally yesterday.  Physically, daily demands never slow down.  I had two important meetings this morning before and during preschool that ate up my entire morning.  I feel like my to-do list stretches out, longer and longer before me, and all I want to do is take a nap.

It doesn’t help that I am catching a cold.

I’m tired, I’m worn.  My heart is heavy.  That really seems to be my theme song.

I find when I struggle with this type of exhaustion – the all-encompassing, overwhelming type – that I am back in what I call the darkness.

It’s not good here.  I am not my best self here.

I do my best to keep it a short stay.  I’m doing better at being honest about it with the people around me who can help.  I think I figured out my destination: bed.  Today, I just need to do what I need to do to make it til bedtime.

Today has been tough.  I don’t know what part of me thought I could breeze through Kiran’s disability report for DHS to determine he is, in fact, still disabled, and therefore can stay on the health and disability waiver and get those services….

It took me a solid three and a half hours, and I still need to print some documents off and make copies of everything so the next time they decide I need to prove my son has a disability, it can maybe only take me two hours to do so.

It’s a harsh light to be put in, having to set out to prove to someone your child has a disability and needs services.  It’s not fun, sifting through the diagnoses and the list of specialists; having to dive deep into the part of your life you try to just tuck away so you can LIVE your life.

But it’s worth it.

And tonight, I got to watch Kiran live his life at the Help-A-Heart Christmas party at Courage League Sports.  That place?  Awesome.

Have you ever dreamed your child could run under a parachute while playing a game among friends?  I will be honest: it hadn’t occurred to me to grieve this experience for Kiran.  Only, I don’t have to.  Because tonight, I saw the people who work here (actually, it was the owner herself) run while pushing Kiran’s wheelchair underneath the parachute like he was just any other kid playing a game.

My heart grew three sizes.  Today was a grinchy day.  Today was a day I didn’t want our life.  And then.  I got to see my kid just playing and being a kid, thanks to these people who just know how to make that happen.  I’m still learning how to make it happen.

And the cherry on top?  I got him to smile for a picture on Santa’s lap.

Kiran was scooped up from preschool, and we headed straight to Iowa city for his eye appointment this afternoon.

These appointments always take the longest. Lots of waiting.

But!

All the news was good today.

His right pupil is remaining open. When they do the surgery Kiran had to help open up his pupil in his right eye, oftentimes it shrinks back down due to scar tissue. That is not happening for Kiran at this point – His pupils are roughly the same size, and Dr D was able to clearly see the red reflex in both!

The cataract in his right eye is not getting bigger. At this point, it is not getting in the way of his vision.

We did a repeat VEP test. Kiran had this test done two years ago.  This measures how quickly and with how much strength visual stimuli is getting to the brain. The strength of the signal was HUGELY improved from two years ago and was essentially normal. The speed at which the signal gets there, however, is still quite slow. She explained that adults who have had normal vision that then develop this issue often describe things as being “muddy”, color contrasts not being as sharp, that kind of thing. But we were all quite excited about the strength of the signal – huge improvement that Dr D didn’t necessarily expect at this point.

She does feel he has vestibular nystagmus. Nystagmus is the shakiness of the eyes. He used to have it all the time as an infant but has largely grown out of it. However, we are now seeing it with certain movements – like spinning – that have to do with the vestibular (think inner ear/balance/coordination) system.  We want to be careful not to overdo those movements and continue to explore them cautiously in a therapy setting (which we do with our OT already).

Dr D also felt his eye teaming – or his eyes working together – isn’t perfect but is a lot better than what she would expect at this age given his history. Since he had such a small pupil and all those pupillary membranes in his right eye for the first roughly 18 months of his life, his eyes didn’t learn to work together during the time they normally would. This is often a permanent issue, and she said there’s not much we can really do other than what we are doing: Have him wear his glasses, offer visual stimuli from various distances, etc.  But, again, she felt that his teaming was better than she would have predicted given his history.

All in all, I will keep taking this news. Kiran is doing great, he is improving visually, and he’s just a rockstar patient.

You know how, as a parent, you second-guess every decision you make pertaining to your children?

Kiran sat next to Santa last night, in his wheelchair.  We got to the open house, and we watched for awhile from a safe distance.  There was another little girl who was apprehensive about Santa, too, and we watched him next to her and her parents.  When it was our turn, I opted to just let Kiran sit next to Santa, in his safe space.  He didn’t cry this time, but he also wouldn’t smile.  He did look at Santa and then bring his hand to his mouth in kinda a surprised way.

He didn’t cry, which is progress.  And this was take one.  We will see Santa at our Help-A-Heart party next week, and I will attempt to get an on-Santa’s-lap picture then.

I have been regretting not trying to do that last night.  Get a picture of Kiran on Santa’s lap.  So, of course, in true Holly fashion, I have been analyzing why I didn’t this morning.

Two reasons, really.

1) He has never liked Santa.  In years past, he has been, at best, apprehensive; at worst, he has CRIED.  And if you know Kiran at all, he simply doesn’t cry.  Like, seriously.  It is so rare for him to cry that it startles me when he does – and I certainly know something is actually really wrong.  Now, this is nuts.  Kiran loves EVERYONE…except Santa.  And there is that part of me that simply thinks “This kid has been through – goes through, daily – enough; why would I put him through a stupid Santa lap picture when it’s going to mildly traumatize him for life?”

2) I struggle with it for a different reason this year, made so poignant by the little girl next to us who was able to communicate with her parents that she didn’t want to see Santa.  Kiran can’t tell me.  He can’t let me know, with words anyway, whether it is something he wants to do or not.  And I really am the type of mom that wants to respect my kid’s feelings.  Only…I have to guess what they are.  Granted, I would know after I placed him on Santa’s lap.  But I guess I just was grappling with that last night, so I played it safe.

Exposure is a good thing, though.  We will try Santa’s lap at HAH.  In the meantime, we will listen to the Must Be Santa song some more, and we will keep reading our Christmas books and looking at Santa’s picture.

I trust that he will let me know, the second I set him on Santa’s lap, if he is okay with it.  I just hope he trusts me, his mama, to hear him and respect him – and protect him from the big scary man, if that is his experience of Santa again this year.

I was asked yesterday how I was doing.  You know, the way someone genuinely asks and wants to know and makes you answer somewhat thoughtfully instead of just saying “I’m fine”.  Because of the morning I have had inside my brain and anxiety, here is my for real no-sugar-coating answer:

I am overwhelmed and exhausted.  In other ways, I am making serious head-progress as it relates to accepting the reality of my life with Kiran.  At the same time, I want to cry and scream and crawl under the covers and refuse to come out.  Also, I am determined, now more than ever, to figure out how to make the world a safely accessible place for Kiran.  But, that leaves me often overwhelmed and exhausted.

I want insurance companies to think more holistically and stop being lured in by the present dollar.  I found out this morning from our medical supply company that apparently, our insurance doesn’t cover Nourish (This is a real food enteral (tube-feeding) formula that we have used as a back-up for travel and now during Kiran’s school day).  Apparently, we shouldn’t have even gotten our last shipment of it – and we certainly can’t count on any more.  They will cover the sugar-laden enteral feeding formulas that no dietician would ever declare it was fine for an oral-eating kid to live off of, but they won’t cover real food that would actually make the child healthier long-term.  It’s frustrating.  If we choose to continue to use this as our school and travel food, right now, it would cost us an extra $100 a month out of pocket.  We will probably just do the harder thing and pack blended food instead once our current supply runs dry.

At least once a week, I find myself wishing I could just put Kiran in the car and go somewhere.  Anywhere.  The grocery store, a friend’s house… without packing a million things.  It is the cycle of forever grief, living with the reality of Kiran’s limitations.  Not only do I still have to pack diapers and wipes, but I also have to pack feeding supplies – syringes and tubes and blended food – and then there is the wheelchair.  And there is the constant thinking and plotting of how.  How will I navigate this space – is it accessible?  Is there a ramp?  How many stairs?  Will there be enough room?  Am I going to look like a complete idiot trying to maneuver him in his wheelchair?  I’m not a complete newbie anymore – but this is still going to be my first winter, and the ice and snow are going to bring added challenges and worries to what is already taking up a lot of space in my brain.  Constantly.

But I refuse to hide out at home with him.  Kiran deserves a life.  He deserves to be out in the world, experiencing things, being with people, like any kid.  So even though I have a million extra steps and considerations, I keep plugging along.  Exhausted and overwhelmed – let it be damned.  Kiran deserves a life, and I am determined to give him the best one possible.  He will not be subject to his mama’s limitations too.

I live on this rollercoaster of determination and fear, joy and grief, confidence and utter judgement of myself – how am I doing?  Well.  I’m still out of bed, and I’m still fighting to live my best life and give Kiran his best life.  But I wouldn’t say I’m fine.

As passionate as I am about supporting Help-A-Heart and raising awareness about congenital heart defects, I find myself rarely thinking about Kiran’s heart.  He has been that stable since heart surgery in September 2016.  We are so lucky for that.

And – I have to admit – I am overwhelmed thinking about all of the other diagnoses and daily cares he has going on.  Right now, he seems to be getting in all four molars, so that has been a big focus.  Did you know poops become more acidic when you are teething?  Yeah, raw sore bum is another focus.  And of course, our normal focuses of eating and mobility and gaining cognitive skills and figuring out how to communicate.

I don’t think about his heart.

This morning, I am.  We have a dentist appointment at 8 am.  Kiran will always have to take amoxicillin prior to any dental appointment – cleaning or work being done, doesn’t matter – because he is at increased risk to develop an infection that would affect his heart.  Because of his heart defects.

Forever.  This is why people talk about there being no cure for congenital heart defects.  Not only will Kiran have to have other procedures done in his life for valve replacements, but he will also have to have lifelong monitoring and extra precautions like amoxicillin before the dentist.

Not a huge deal.  So I put 10 ml of medicine through his g-tube a half hour before the dentist.  But, in our life, it’s another thing to remember.  Another extra step.  He will always need this extra step.

And this morning, I remember his heart.  And mostly, I am just thankful amoxicillin is our biggest concern regarding it right now.

I long for an easier life.  I want the freedom to stand in the shadows, to be the wallflower.  I don’t want people to know my name – to know my son’s name – I just want to happily interweave and exist in the world.

That’s one side of me.  It’s the side I have existed inside my entire life, up until becoming Kiran’s mom.

But now?

Because it matters, I want the biggest platform possible to educate and advocate.  If only I could get on Ellen, maybe things would change….

I will continue to write emails and request meetings and start conversations and use this blog and my facebook page as a small but effective platform.  I will continue to make waves and fight for safety and accessibility and just the right for my son to exist in this world.

But it takes it out of me.  I sit here now, completely depleted and holding back tears.

Kiran has made me grow so much, and it has been a challenge every step of the way.  The growing pains are real, guys.  I live so far outside my comfort zone most days, I almost can’t believe I am really doing it.

Even with his preschool teacher and the school nurse – my goodness – oh to be the parent who you meet and then just exchange pleasantries with at pickup and dropoff, who doesn’t ask for anything more or require anything greater from you?

I WANT TO BE THAT PARENT.

Instead, not a single week has gone by without at least one (and often more than one) email being sent to one or both of those people.  I have to.  Kiran doesn’t have his own voice right now; I have to be his voice.  None of it is confrontational – informational, really – but I just wish I didn’t have to.

By the way, today, I had to send one of those emails to his preschool teacher.  Just to let her know he appears to be getting all four molars in at the moment, and because of the increased hand-in-mouth activity, his hands are starting to get chapped so we are trying to deter him from putting his hands in there.  And she responded right away and it was so nice – she just said they’d get some things together to help substitute for his hands – that I really did almost cry.

They are fantastic.  But, I still wish I didn’t have to be that parent.

I *know* I am annoying.  I *know* I communicate a LOT.  I *know* people get tired of hearing some of the same things over and over and over again from me.  I also know I am always respectful and seek to communicate in the calmest, most effective manner possible.  I know that a lot of people don’t know the things I now know, and I know that they matter.

In other words, I know I am going to continue to be that parent.  Every day.  All day long.

For him.