An article.  A group text conversation.  Two experiences today have led me to think about my long-touted theory of what it’s like to love.

I wrote about this in my college blog – I did not realize then how spot on I was.  College was a long time ago, and life experience has shown that I was wise beyond my years….

Loving someone amplifies every emotion, both positive and negative.  I think it is why so many find it difficult to love – that kind of vulnerability isn’t easy.  I also think it is why so many relationships fall apart – and no, I have no room to talk here – because people simply aren’t ready for the negative emotions to also come at them with greater force and depth.

I am not simply talking about romantic love here.  It is the yin and the yang of all love.

The strongest, greatest love I have ever experienced in my life is the love I have for my son.  The greatest love – the greatest sense of loss.  The greatest peace – the greatest fear.  The greatest moments of absolute joy – the lowest moments of absolute despair.  The greatest living – the greatest grieving.  It is all inside this life we live; this love we receive and give.

Experiencing the loss of my brother through death has given me a deeper appreciation of life.  Experiencing the difficulties with Kiran has given me a deeper appreciation for the successes we have.

For crying – my latest blog entry was in celebration of a few swallows of water!  Who knew my joy could come from such a small success…but when you deal with the daily challenges of a child who can’t safely and successfully eat….

I have always, always, said it is worth it, to love.  Go back and read the very first entry I ever wrote in this blog.

In order to experience love, joy, peace, life….we must also embrace the flip side of those things.  I am thankful my experiences have given me depth on the positives.  I wouldn’t give it up for anything.  It IS worth it.

I am willing to bet I have written more about Kiran’s feeding issues than his cardiac issues.  I have said a million times (and will a million times more) that the feeding issues are the hardest.  Cardiac is scary, yes, but cardiac isn’t something I am supposed to be able to do, and it isn’t something I have to work on multiple times a day, every day.

Kiran’s oral eating ebbs and flows.  Sometimes he will have a really good meal – or a really good day – (and by good, let’s be clear, a good meal for him is 15-20 bites) and sometimes he just decides to be very close-lipped for meals or days.  We have been in one of those periods recently.  And I had been frustrated.

I ebb and flow too, with how I feel around mealtimes.  I have been able to refocus myself this week with working on the sensory stuff with food with Kiran.  If he isn’t going to eat, we can at least smoosh pudding around (and what better hair gel exists, really!?!) and throw puffs on the floor.  We can watch the thickened water drip from the spoon to the tray.  We can use the grabber to taste a new spice.

It’s been good for both of us, it seems.  We are still working toward our ultimate goal (baby steps, teeny tiny baby steps), and I am not pulling my hair out trying to get him to take bites.  Tuesday at dinner seemed to be a breakthrough.  We started with the pudding that night, and suddenly, he wanted to eat again.  He took several bites of pudding, several bites of his stage 3 baby food (I think it was chicken noodle or something), a few bites of pear, AND did two drinks off a spoon of his thickened water!  I have been offering him his nectar water 2-3x a day since Sunday night, and this was only the second time ever he accepted it – and the first time he did more than one drink.

It encouraged me.  Like I said, I ebb and flow.  I am not always good at letting him explore and make a mess every time we sit down to eat.  But it excited me, and we have been doing a LOT more sensory play during mealtimes this week.  I have slowed my brain down and really enjoyed the time with him (as best I can; I think I have sensory issues too…I don’t always like being messy while helping him!)

Today at lunch, Kiran calmly and willingly – eagerly, even – took six drinks of his nectar water off a spoon.  I have to gently hold his hands to keep him from “helping”, but once he got the first drink, he was readily opening his mouth for more.  The best part?  Absolutely NO coughing, gagging, or difficulty of any kind!  It is so great to be in this place, with solid direction, and something that is working for him!  Due to tiredness, we took a break from oral practice at snack time today, but he did three spoon drinks at dinner as well!

It probably seems like such a small thing to people who have never had a child with feeding difficulties.  9 sips of water in one day – big deal, right? – YES!  For a kid who has been pretty much refusing liquids for over a year now – or struggling with them if we weren’t giving him the tiniest of sips – this is a big deal.

I’m so excited about the progress he is making and where he is headed.  I am under no illusions and know this will be a slow process, but it is progress.  We continue to head in the right direction, and I will continue to work alongside him every step of the way.

As I sat here in bed preparing to write this, it just occurred to me how many things I simply didn’t know existed before Kiran.  Did you know they sell a powder or gel thickening agent to make liquids easier for people with risk of aspiration (otherwise known as “going down the wrong tube”; taking food or water into your lungs) to swallow effectively?  True story.  I ordered some from a company yesterday, in order to get the gel that Kiran’s feeding therapist uses.

Good thing I did, because that is our big news!!!!!  First, minor backstory.

You might remember Kiran recently got a swallow study.  This is the third swallow study he has gotten in his lifetime – and the most effective – even though we only got a few swallows, we could get a sense of what was happening.  Kiran does aspirate small amounts, and the study showed liquids were an issue for him.  When his feeding therapist got the report, we were told it was best to stop giving him liquids at home until we could trial with her to see what might work best (and most safely) for him.

It’s not that he was ever a big drinker.  I had been trying with various things – sippy cups, the honey bear cup, medicine cups – but I was lucky to ever get one drink in him.  Like with everything, I would offer it to him.  We landed on just trying with a sippy cup – mostly playing with it or biting it – occasionally small sips would be taken.  But I stopped completely after the swallow study.

And we have been trialing different things in feeding therapy the last few weeks.  Flavored water, carbonated water, water thickened to what they call nectar consistency….The goal was to figure out what would be safest for him; which type of water would help him be most aware of its presence to swallow effectively.  And today, we got the green light: We now get to try nectar thick water from a spoon at home.

It is crazy the things we celebrate along this journey!  It is so nice to have clear guidance on how to safely get him to practice drinking.  I feel like the swallow study really helped us be able to hone in on what might help Kiran move forward in a safe way.  And I’m excited for my giant pump of gel thickener to get here so we can get started!

In other very cool therapy news – We practice standing a lot in physical therapy.  The PT supports him a little bit at the waist while his hands are propped up on a table, and we distract him with toys and songs and conversation.  Today, he stood this way, without even attempting to buckle his knees, for ALMOST TEN WHOLE MINUTES!  I don’t believe we have even come close to that mark before!!!

In a couple of weeks, we should know if he gets a spot in the cage for the next session starting in March.  Fingers crossed!

Progress.  Steps forward.  We might be shaky, but we are still moving.

It is amazing how much I can talk myself into putting off until “after the holidays”.  Then, yesterday, it’s January 2nd, and I feel like I have to accomplish all 876 things I have been putting off.  There are specialists to email and appointments to make and prescriptions to get and therapies to attend and medical appointments – yes, medical appointments – this month!  I feel like it has been SUCH a long stretch (and it HAS been)…six months!  But January is the month we see almost all of Kiran’s specialists (save ortho and genetics).  This means two trips to Iowa City – because there is always that one appointment you can’t quite make work on the same day as all the others.

I can’t honestly say I’m ready to dive in and deal with this side of things again…but I will.  And I am hoping to update the blog more frequently this side of the new year.  In fact, I am hoping to be blogging with some good news after feeding therapy tomorrow…so stay tuned….

Also, for those not friends with me on facebook, here’s my new year’s post:

2017. As the calendar rolled into this year, I had a very different vision of what my life would look like today. I am no longer going to guess what the year ahead might bring, because most of my adult life – whether because of choices I’ve made or cards life has dealt – has not gone as envisioned.

Instead, my focus will continue to be to live an honest, healthy life. A big focus is to be the best Mom I can be for this little man right here. It’s not always as clear-cut a path as you might imagine. But I’m cutting away the dead branches and scooping off the snow…we are traveling the road, together. Finding our way inside a new family dynamic, together.

Kiran was getting some Nana snuggle time on the couch this evening, and he started to do his “crunches.” Rather than use his arms to pull himself up to a sitting position, Kiran has always tried to simply use his core and sit straight up. This kid has better abs than me, I can tell you that right now.

Anyway, for awhile now, he has been able to come up to sitting from a reclined position … but tonight, he went all the way down to lying on his back (on Nana’s legs) and was able to pull himself up into a sitting position! He did this a handful of times while Nana was holding his feet down with her arms, and then did it about 1 1/2 times without the feet-hold.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He is so strong, and he continues to amaze me. We celebrate every bit of progress.

Also: A belated Merry Christmas wish, from us to you and yours. ❤️

I want to be writing more than I am.  I miss sharing about this heart life with no filters.  The current season in my life makes me feel as though I need to be cautious and add filters.  So I choose to not write instead.

Kiran is doing well.  We have been attending therapy sessions and have had a break, now, from medical appointments.  In January, we go to Iowa City twice.  We will see all of his specialists, except his orthopedic doctor and genetic doctor. And we have a date set in May for his brain MRI.

Otherwise, we just continue to celebrate all the little bits of progress we see.  He’s learning more about his body and how it can move.  I caught him trying to sit up by putting weight through his arm, rather than simply trying to crunch himself up (seriously, this kid has abs).  He is responding more to simple commands “Look at Mama.”  “Pat your head.”  He is finding his opinions and expressing them forcefully – he is really not liking being strapped into any seat currently.  Such a normal two year old thing!  And he is singing along with me – and the radio – to Christmas tunes.

It has not been an easy holiday season, but there is so much joy to be found everywhere…so I just try to focus on continuing to find it.  Kiran makes it easy.

I just got off the phone with Nurse Randi.  No medical concerns regarding fluid intake.  She said it would take a lot more than a cup and a half, at Kiran’s age, to cause an overload on fluid.  She recommended to shoot for the same daily fluid ounce goal I came up with in my research and calculating this morning.  So I’m on the right track, and we will adjust accordingly.

Fingers crossed this helps with appetite, acid reflux, and poop issues.  Fingers crossed I can now breathe and forgive myself.  Another mistake that did not cause permanent damage.

Phew.

Being a perfectionist who struggles with anxiety has never been easy.  Having a special needs child and insisting on doing things outside status quo (specifically, not feeding him formula but real food through his g-tube) adds a next-level challenge to an already hard aspect of my life.

Kiran’s daily fluid intake needs is something I have researched on my own multiple times.  I have taken into account his weight, his estimated daily calories, the fact he is fed through his g-tube, the desire to increase his volume handling capabilities with his blends….

Many people have asked about number of wet diapers, which has never been a concern.  The kid pees a LOT.  (I realized why today; I am getting to that)  You always hear and read about the dangers of DEhydration when it comes to your tubie, but nobody has ever asked or expressed any concern for OVERhydration.

Kiran had a rough night last night.  I have no idea why; this has nothing to do with this post.  But it DOES have to do with the fact that I was wide awake at 4:30 this morning, on my phone, browsing facebook.  I came across a post about daily fluid intake on my most followed blended diet group, and it made me tune in and think differently about how I am calculating Kiran’s free water needs.

And I’ve really screwed up.  And I spent most of the first three hours of my morning crying and unable to stop beating myself up.  Even my mom has questioned before how much water I give this poor child (and I went and did even MORE research after she did so, even though I had already researched it so many times before.  And even THEN, I didn’t see it from the perspective I saw it early this morning.)

I have been overhydrating Kiran by about a cup and a half (12 oz) of water every day for the last several months.  While my fears of any serious medical concerns have largely been assuaged since my initial panic moments this morning through research and knowledgeable opinions from trustworthy people, (Don’t worry, I am waiting on a call back from the nurse at our pediatrician’s office; I still have enough worry.) I am still seriously upset with myself.  Because – though this may not be the answer – backing off on free water will likely help with his feelings of hunger, acid reflux, and pooping issues.  I have been thinking about hydration all wrong this entire time.  More isn’t always better.

Honestly, I’m embarrassed and mortified that I could have gotten it so wrong.  A cup and a half is a lot for a little turkey!  I am only putting it out there because I don’t know how else to process these feelings of complete and utter failure.  I am constantly researching and reading and trying to find better answers, better ways, the BEST of everything I can do to help Kiran thrive and move forward….

I try so so so hard, all the time.  To be the best mom I can possibly be for this amazing little boy.  And I don’t know how I got it so wrong, especially since this is literally the piece I have researched and thought about and calculated the most.

You know.  Being a mom.  Whew.  It feels like this: For about ten seconds every month, you feel like “Okay, I’m doing alright.  Maybe I can handle this motherhood thing.”….The rest of the time, you just feel like you are not enough, you are a big fat failure, and you must certainly be royally screwing your child up despite your absolute best efforts.

At least that’s been my experience.

 

Our local heart support group held a CHD forum Monday night, with various people with different relationships to a child with CHD (Mom, Dad, Grandma, Friend, Sibling, Child with, Adult with, Angel Mom) talking about their experiences.  The fellow heart mom talked about hospital triggers and the importance of self care, and I have been thinking through some things ever since.

Before my brother died, I lived inside a bubble most 17 year olds in my situation live in.  I lived in a small town, with loving Christian parents, and I had a relatively golden upbringing.  I know this isn’t the case for all kids, but for me, life was good.  Bad things didn’t happen to families like mine, to people like me.  I was 17.  I was oblivious.

So as we were driving to Omaha in the backseat of my pastor’s car, to see my brother who had been life-flighted after a horrible car accident involving a semi, in my mind, everything was going to be okay.  I remember I kept telling my mom “It’s going to be okay; he’s going to be okay.”  I was scared, yes, but no part of me thought he was actually going to die.  That just couldn’t happen.

But it did.  He was gone before I got to see him.  I never got to say goodbye to my brother.

My grandmother spent time in the hospital just weeks after we buried my brother.  And I wanted to be right there as much as possible.  I was determined to be able to say goodbye.  I never shared this with anyone at the time, but I was obsessed with wanting to be with her when she passed.

She recovered and went home, but she went back into the hospital – and it was the end this time – shortly after I graduated from high school that next spring.  We knew it was the end and that it would be time to say goodbye.  I remember, again, wanting to be there when she passed.  I stayed close.  I was in the room a lot.

And then, my best friend and her dad came and took me to Pizza Ranch to get something to eat.  You guessed it.  My grandmother passed away while I was away from the hospital.  Again, I have never talked about this, because I never really pieced together why (and I thought it was a bit morbid)…but I was devastated that I wasn’t there with her when she passed.  I wanted to have the opportunity to say goodbye that I never got with my brother.  I wanted to be with her, because I wanted so desperately to have been able to be with him.

Fast forward a million days later, and it has finally occurred to me why I find self-care so difficult when I am in the hospital with Kiran.  I fly through showers and have people deliver me food to his room so I don’t have to leave.  I refuse to spend the night away from the hospital.  Part of this is definitely just who I am, but part of this must stem from those experiences.  I am so afraid something will happen, and I will not be there.

And with Kiran, I HAVE to be there.  I would never forgive myself if I wasn’t.

Recognizing the reasons definitely won’t change my behavior, but it is good I understand where this piece of me comes from.  I hope I never have to say goodbye to Kiran, but you better believe, if I have any control at all (which my life has shown I rarely do), I will be right there with him if I do.