Heart Reminder

Because I value you, and I care about your anxiety level, I will not put you through what I went through this afternoon: We have no added concerns about Kiran’s heart function at this time.

You’re welcome.

Normal Monday morning.  Kiran’s dad, who Kiran spent the weekend with, texted me wanting a phone call about Kiran’s cough.  He was concerned about the frequency and that it was “wet” sounding.  I asked if he felt we should get him in to see the pediatrician this afternoon, and he agreed to call the nurse to see what she thought.

As we were waiting for the nurse to call back, we also discussed how we have noticed Kiran’s urine output has increased lately, especially overnight.  We ended up growing impatient waiting for a callback and just made an appointment for this afternoon.

Then Dr. J herself called Kiran’s dad back, and he spoke with her about our concerns.  He asked me to call him immediately after.

Dr. J had some concerns, with his cough and urine output, that he might be retaining fluid.  Which would be a heart issue.

My stomach dropped, I immediately felt sick, and my anxiety ramped up.  It was NOT something I was expecting to hear today.  Kiran’s cough has been lingering yes, but I wasn’t yet concerned enough about it for yet another doctor office visit.  So I certainly wasn’t thinking HEART.

We had a very long visit with Dr. J today.  We were there for at least an hour and a half, in fact.  Everything looked good.  This seems to be Kiran’s way – not that I am complaining – he concerns us with all these symptoms, and then he’s just fine.  Oxygen saturation was great at 98, lungs sounded perfect, ears/nose/throat all looked fine, no giant lymph nodes, no swelling, no stomach protrusion, heart sounded good.

Because increased urine output can also indicate diabetes, we did check his blood sugar and A1C – both came back normal.  We discussed pros and cons of a chest x-ray – a part of me really wanted to do it, just for the added encouragement – but ultimately we didn’t feel it was necessary.  Nothing Dr. J saw during our visit made her think he was retaining fluid or that this was a heart issue at all.  Though we can’t exactly explain the urine output, it simply appears he has a cold and/or allergies.

Which I knew.

We talked at length about things to look for if he is retaining fluid, what to do if we don’t see the urine output go back to normal once the illness clears up, some plans of attack, things it might be, the measles outbreak and his upcoming second dose and what to do if the measles make their way to the area…..

We covered a lot today.

Here’s what today reminded me.  It’s something I KNOW, but I tuck it away, at the very back corners of my brain: This heart journey is not over.  We have to be diligent and not grow complacent (not that we have, but a good reminder).

And it’s never crazy to just visit Dr. J.  We like her anyway.

My heart might need a little extra TLC after the rollercoaster of the afternoon.  But Kiran’s heart appears to be just fine.

For now.

 

 

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Eating

I am learning all the time.  I knew exactly nothing about being a mom to a child with special needs before I became one.  Nothing.

And though I have learned a lot – through experience, through conversations with medical professionals and therapists who know more than I do in their respective areas, through research – there is no manual.  There is no “right” way to parent Kiran.

As his mom, I am still expected to be the one leading the way.

I wish someone could definitively tell me what course to take, with so many things.  The area I am currently struggling with is feeding therapy.

As most of you know, Kiran has had a feeding tube basically his entire life, and it has been his main source of nutrition as well. (Some kids have a feeding tube because they can’t quite take in enough to grow as they should; whereas Kiran’s oral eating is really just practice, still, and has only recently been in any measurable quantity).

We have been in feeding therapy now for over two years.

At his last swallow study, when there was no sign of improvement with his aspiration risk in six months’ time, I entered into a bit of a state of despair.  The question that fairly consistently gnaws at me, as it pertains to all of his therapies: What about quality of life?  What about, at a certain point, accepting that this is who Kiran is and moving on with our life?

This is especially poignant with feeding, for me.  He has made progress.  He absolutely has.  But it has been so rollercoaster – moving forward just to have to move back, time and time and time again – and it had felt very stagnant for at least that six month period.

This is not to say he isn’t doing well.  He has still, other than illnesses and busy weeks, taken in more orally than he has in the past.  We have successfully weaned down his tube meals from 1000 calories a day to 850.  This is huge.  I don’t want to discount how far he’s come, because feeding therapy has helped considerably, and his desire to eat has certainly grown as well.

However, his struggle with his swallow and his aspiration risk is keeping us at this point: purees and crunchy meltables are his only safe foods.  Or at least that was the case until a couple weeks ago.

We (again) introduced small bites of mashables, namely, banana and avocado.  It has been going pretty well in feeding therapy, and okay at home.  He primarily likes to hold the food in his mouth – he tends to lose food and forget it’s there, causing more issues with the swallow/choking risk.

And frankly, I’m just frustrated.  I had everyone on the same page – Kiran’s dad, his feeding therapist – that it might be time for us to look at taking a break with feeding therapy.  The added challenge is we have had a sub for some time, as Kiran’s regular therapist just came back from maternity leave last week.  So I obviously wanted her to see Kiran for a few weeks and get a sense of where he was before we decided anything for sure.  But now, his dad is excited and feels we are getting somewhere….

And me?  I’m just jaded, I guess.  I’ve been in that chair at every feeding session for over two years.  I know how many times we have gotten to the avocado and banana stage before, just to have to step back to what he is better at managing.  What is safer for him.

I want a break from the rollercoaster.

But I struggle, because it is never about what I want.  And I don’t know what is best for Kiran.  I don’t have the answer here or in any other area of his life.  I just know that I have come to terms with him needing the feeding tube forever.  I also know that I will never give up on him, and we will continue to push forward as long as progress is being made.  I just don’t know the balance of these things.

I want a break from being in charge.

Grace for Humanness

I spent most of the morning crying.

Really, I’m still not done.  Sometimes, I think, everything just bubbles up until it has to spill out.  And sometimes, it doesn’t take much to release the waterworks.

I got a text from Kiran’s dad this morning, asking if we can set up a new system to make sure he is aware of special days at school.  Because today was pajama day, and Kiran was supposedly the only one not wearing pajamas.

Problem is, I had no idea it was pajama day.  Because I read the daily note that is sent home, I read the monthly school newsletter that is sent home, I read the all school emails that are sent out….I was the kid in school who read all the assigned reading, and I read everything now too.

So I spent the morning feeling guilty and wondering how in the world I had missed something like this.  I am not perfect.  I will be the first one to tell you.  BUT.  THIS stuff, I am good at.  I am organized.  I am a calendar expert.  If there was a special day noted, I would have immediately put it in the shared Kiran calendar his dad has access to.

Our lives are too busy to not be put together in this way.  And without my calendar (and notes), I wouldn’t survive.

But it was more than just the guilt.  It brought up so much of the other stuff.  Kiran couldn’t tell us that today was pajama day.  It just puts a giant spotlight on his limitations, and that is always a difficult pill to swallow.  And not only that, but now he had to be different – in another way – from his classmates, showing up handsomely dressed instead of in comfy pjs.

Of course, he doesn’t care.  Again, this is one of those things that is my problem, not his.  I take great comfort in that, but it doesn’t make my mama’s heart ache any less.

I just found out moments ago: It wasn’t my fault.  I didn’t miss something.  Today – coincidentally – Kiran was out of his daily note, so his information was sent home on the daily note his classmates receive.  I noticed there was some typed information on the note, which we never see on his daily note.  So it made me wonder.  And I decided to send his teacher an email to figure out how we missed the memo, to make sure it doesn’t happen again.

What I found out: an all-school email that was supposedly sent out yesterday, wasn’t.  Something must have happened in the system, and it wasn’t received by at least some parents.  And the PJ day announcement was something sent home on the daily note his classmates receive, and Kiran was, unfortunately, forgotten.

I’m relieved and not at all angry.  It is SO much easier for me to show grace to others in their humanness than it is for me to forgive myself for the same.

We have decided to switch Kiran to the classroom note everyone receives, so we don’t miss any other important announcements.

All because of pajamas.

Unwilling, Exhausted Advocate

I led a support group discussion on the topic of advocacy at the Help-A-Heart meeting earlier this month.  It has been on my mind a lot and has become a big part of my role as Kiran’s mom: to advocate for him.

This morning, we had a meeting before preschool with Kiran’s teacher, SLP, and AAC guy (Augmentative and Alternative Communication) to discuss classroom plan moving forward.  Since consistency is the main principle I choose to raise Kiran with, it remains very important we all are on as close to the same page as possible in how we approach learning this form of communication.

And the meeting went something like this – I share this because it is such a good example of how I process information and then advocate.

They expressed their thought process in how we should approach this.  Apparently, the words’ order on the pages is important.  The four words on the first page are the four most common vocabulary words in daily language.  They were strongly suggesting we focus on those four words – Like, Want, Not, and Go – and have them on a placemat in four quadrants for Kiran to touch.  They then said his mack button – the voice-communicator, when he pushes the button (which has the pic of the vocab word velcroed to it), it says the word, recorded in my voice – can be used more for interaction.  So, for instance, we can continue focusing on the word Turn while we read the book; he can push the button to participate in the reading process and let us know to turn the page.

I am taking it all in.  I ask a few questions.  Kiran’s dad asks a few questions.  He tries to bring up “More” being a word that has been used a lot, that Kiran is most familiar with.  I – still trying to process and think about how this is all going to work and how communication (especially with little kids) works in general – said something about how it doesn’t matter much if “More” or “Want” is used, because WE will understand what he is trying to say, regardless of the word being used, between the two.

But I am sitting there, processing it all.  I took in his point.  I listened to the experts in their respective fields.

I almost said nothing.  I almost just went along with it, no questions asked.  But it was nagging at me.  So, toward the very end of the meeting, I spoke up.

My question was this: Do we HAVE to focus on the first four words, especially given, for the last month, we have been focusing on these five words: Go, Stop, More, All Done, Turn.  And, agreeing with Kiran’s dad, More is a concept we have drilled in Kiran’s head for a long time.  If the research is there – and again, deferring to them as the experts in their areas – I wanted to ask that question.  Because we are the experts in Kiran.  And we know what concepts he may more easily understand.

And we want success.  Competency.  We want it to work with what KIRAN wants to communicate.

And I was heard.  And we essentially had a bit more discussion around it and decided to work on these four words on his placemat, in the four quadrants: Go, Stop, Like, and More.  And to work on Turn on his button, in an interactive setting.

I didn’t want to speak up.  Like I said, I almost didn’t.  I woke up not feeling well, I wasn’t really wanting to attend this meeting, my brain was a bit fuzzy, the whole damn thing just feels completely daunting and overwhelming even on a good day…. But I have learned to listen to my gut.  I have learned to process information more quickly in these settings.  I have learned to hear Kiran’s dad and process what he is trying to say.  I have learned to take all of it into account, play devil’s advocate with myself a bit, try to make sure I have issue (or don’t) with the recommendation…..and I have to speak up if I do.

I left that meeting feeling so incredibly blessed.  Kiran’s dad felt good about where I went with things and was appreciative I spoke up in the way I did.  His team members all seemed on board and okay with the compromise and focusing on the words that made most sense for Kiran.  His teacher continues to be absolutely fantastic, as she answered Kiran’s dad’s question, stating the other kids next year will learn the words this way as well, so Kiran and they can communicate in the classroom.  And they may even teach his most special friend in the classroom this year (but probably not the others, since the year is almost over).

I know advocating will not always be successful – or this easy – but today, I am thankful that I have learned to do it.  For Kiran.

 

Anxiety Replay

It has been a great weekend.  Really outstanding.  Busy.  A time with family and friendamily…a time to reflect and remember the real Reason life is worth the living.

I posted on facebook – without apology – many, many pictures and a couple videos of our Easter fun.  I am not very good at taking photos, and it is a way I can catalogue and remember our time.  I want all the photos of us, of Kiran, at three and a half (which he is, today…..)

My brain, though.  I think perhaps due to exhaustion and the start of an illness (or allergies, I can’t tell and have never had them before), I am experiencing more anxiety replay than normal.

At the park yesterday, my aunt wanted to take Kiran down the slide.  And I have watched a video or read an article at some point about how little kids can end up breaking their legs if they go down slides on adults’ laps.  And that kind of stuff sticks with me.  Thankfully, I come by my anxiety honestly, and my mom was all over instructing my aunt to get his legs safe…I didn’t have to be the crazy mama.

But in order to carry Kiran up to my aunt, I walked up these crazy narrow stairs with a handrail on only one side – why I didn’t think to walk around and find the safer stairs, I don’t know.  I sometimes feel pressure to give Kiran experiences before I get my bearings in a situation, and it’s something I am actively working on – believing I can (and should) take the time to assess more carefully and not feel pressured from others.

Anyway, anxiety replay number one.  I keep thinking about carrying him up those stairs.  I keep thinking “What if I had dropped him?” or “What if I had slipped?”  My brain actively visualizes these instances, and my heart rate increases.

And then – Eric did take him down the slide.  I am starting to get better at trusting Eric and letting go a bit when it comes to Kiran (Believe me, this is hard for me with ANYONE).  He has shown me a million times he is thoughtful and has Kiran’s best interests at heart.  But I was nervous about this.  And halfway down, I saw Kiran’s foot catch – and I was immediately up in their faces, my heart in my throat.  I thought for sure Kiran was going to break his leg.

Eric had him.  He stopped when his foot caught, and he had him.  But man, my anxiety was through the roof when that happened.  And then, due to some PTSD from a former relationship (which I am realizing is actually legitimate), my anxiety was even higher, as I repeatedly apologized for reacting the way I had.

But again, I keep replaying it.

It was actually so bad when we got home yesterday, as I was driving Kiran and me home from Eric’s, that it was all I could do to get home and just hug Kiran.  It helped to physically hold him and tell my overactive anxious brain that he was okay.

I don’t experience this often, but I share it because it is a part of our journey as well.  Not only are there real forces of anxiety at work in our life – legitimate concerns that bring about the worst fears imaginable – but I am also just an overly anxious person.

I didn’t always imagine worst-case scenarios or replay horrible what-ifs over and over again…and it doesn’t happen often.  But it does happen, sometimes.

 

 

Feet and Feeding

I am more than a week behind on updating about our latest Iowa City trip.  I am not as compelled as I once was to catalogue the medical appointment part of our journey – but I know I sometimes look back to remember.

Wednesday afternoon, Kiran saw his orthopedic surgeon, a routine follow-up for his rocker bottom foot.  Dr. M. continues to be happy with how his feet look, but we have to keep wearing the brace at night.  For the last three appointments, I have held out hope that this would change.  Kiran doesn’t care.  He doesn’t know any different.  He has worn that brace overnight every night since he was two months old, after the casts came off.  But for me – I just keep thinking how nice it will be to cut that from our bedtime routine.

I did finally ask the question that has been at the back of my head for some time now – it’s funny how sometimes you just know you’re not ready to hear the answer to a question, in case it’s your worst-fear answer.  I often tuck questions away for months at a time, until my brain and my heart are ready for worst case.  In this case, Dr. M. always asks about how his standing is, how his walking is … he has always said kids usually wear the brace until they are independently walking.  So I finally asked – if that never happens, what kind of timeline are we looking at?  Will he have to wear the brace forever?  Thankfully, the answer is no.  Kiran will likely have to wear the brace for another year and a half, until he is five years old.

A load off my mind.  We have a light at the end of the tunnel.

Thursday morning was feeding clinic.  Nothing monumental happened here, but it was another good appointment.  I have been initiating conversations about taking a break from feeding therapy, both with our local therapist and we discussed it with our team at this appointment.  It is such a difficult decision to make, and we won’t decide anything until our regular feeding therapist has a few weeks with him – she is back next week from maternity leave, and we want her to see where he’s at and have some good discussions around break versus no break in therapy.

It’s just that he has been in feeding therapy for over two years now, and though we have seen some good progress, I feel he has reached a plateau.  Or at least I felt that way after his last swallow study last month, before he started doing some bites of banana and avocado successfully over the last few weeks.  The problem is – we’ve been to the banana and avocado stage before, several times, and then had to inevitably back off from them.  Purees and meltable crunchies have been the deal, for a long time.  And in email communication with our feeding therapist, she agrees that Kiran may need to be here for awhile yet, until he makes some significant gross motor progress and gets stronger overall.

I feel like I am at a place, in all areas, where I just want to know where we are going.  I want to know if it is all worth it, the schedule.  Not only does he have preschool four mornings a week, but we go to Childserve two afternoons a week, for two therapies each visit.  And I am ALL for it, when I see progress.  But I was long ago told that there will be times of plateau, times that a break makes sense, times that he should rest in one area so he can focus more on another…..

The decisions just aren’t straightforward.  Because we also have to think about potentially losing our feeding therapist when we take a break and – even more so – losing our therapy spot, which works well for Kiran’s schedule.

It is never about me, though the schedule often exhausts.  I just want to make the right and best decision for Kiran, and it’s not always straightforward.  I rely on the upcoming conversations with the therapist who knows him well and knows the trajectory of his feeding over the last two years.

It is good we have good people in our corner.

Bucket List

It is a very surreal experience, creating a bucket list for your infant son.  I did just that, as he approached his complex open heart surgery, performed when he was only ten and a half months old.

I was so scared I was going to lose him.

I wanted to make sure he had certain experiences, just in case.

It’s hard to live inside the “just in case”.

I actually only remember two items on this list.  I am sure I blogged about them back in those days, as I grappled with what was to come for him.

I am thinking about this today, because later this afternoon, his dad and I will be taking him swimming in the very same hotel pool we crossed “Go swimming” off his bucket list in.

I am looking forward to it.  Swimming is an activity Kiran and his dad regularly do, every other Sunday morning.  I don’t currently have access to a swimming pool, so I am not able to do this with him at this time.  This summer will hopefully bring some swimming to our lives, but the truth is, I’ve never been much of a pool person.

But the activity is also bringing up these emotions, from years ago.

The other bucket list item I remember, that was SO important to me: Eat ice cream.  I got permission from his pediatrician to let him taste vanilla ice cream around 9 months of age.  He seemed to like it, best I could tell that he liked anything that he ate orally at that time.

I just wanted to be sure he experienced ice cream.  I *am* a big ice cream person, and it was something I CRAVED when he was growing inside me.

We have had so many experiences, so many firsts, so many adventures … I don’t take them for granted.  I am thankful for every single one.

And I can’t wait to take him swimming again.

Small Talk

As an introverted, mostly shy, quiet individual who likes to just listen or blend into the room, wallflower style … I suck at small talk.

This has always been true.  Do you want to get into a deep conversation about love and the universe and humanity and God and really dive in?  I’m all yours.  I can go to the depths.  But when our conversation is primarily about the weather, I’m kinda lost.

I get stuck.

This is even more true now, when so much of my life is wrapped in and around being Kiran’s caregiver.  If you want to talk about Kiran or congenital heart defects or hospitals or accessibility issues or tube feeding or anything else about Kiran or related to my life with him, I can talk your ear off.  For hours.  Passionately.  Some of it *might* even be interesting and/or educational.

But when I am standing next to you waiting for the bell to ring to pick Kiran up from preschool, and we have already talked about today’s weather and this week’s forecast … I struggle finding another topic.  I’m awkward.  I don’t know how to do it.  I don’t *want* to do it.

Acquaintanceship is hard.  I want to skip that part and just get to the meat of a solid friendship.  But you have to wade through the small talk first, and I just have no clue how to move past it.

 

The Path Unexpected

I don’t think anyone grows up dreaming about having a special needs child.  Perhaps I am wrong.  I know I didn’t.  My dreams of becoming a mother were along more typical lines.  My life today as a mother looks nothing like my visions.

But I am sitting here, while Kiran naps, thinking about how I was prepared for this life.  In big ways and small ways, I feel like God had a hand in shaping me and placing me in ways I needed, in order to be the mom Kiran needs.

Losing my brother at 17, I am no stranger to living inside grief.  The grief you experience as a special needs mom is incredibly different to the grief you experience with the loss of a sibling.  However, I learned a lot about myself, about loss, about living with intense sadness and a hole in your heart.  It has served me well and prepared me to live with the losses that come on a seemingly daily basis, the intense sadness that can overwhelm, living this life as Kiran’s mom.

Being a nanny.  I chose this job that I loved, and I gained so much valuable experience with neurotypical children.  It made the typical baby stuff less intimidating for me, and I was able to focus all of my mental, emotional, and physical energy on the new stuff.  The medical stuff.  If I had had Kiran with no prior baby experience, I am not sure I would have come to the other side of that as intact as I was able to.

Making the decision to move back to West Des Moines from Seattle when we were just planning on trying to start a family (Turns out, we were already starting one and didn’t know it yet when that decision was made) was an important decision.  The support of my parents has been invaluable from day one.  And especially now, as my marriage fell apart and Kiran and I needed a safe place to land….I am thankful we are back with my parents.  I couldn’t have done this without them.

People being brought into my life at the right times over the past three and a half years.  The right person who shared his story of faith and losing it and coming back to it prompted me to start attending church again during a period when everything just felt dark.  I don’t think I could still be putting one foot in front of the other on this journey if I didn’t have the touchstone church offers.  The music still continues to inspire and bring me the life raft I need every day to stay afloat.

My mom deciding, years ago, to take a job at the Area Education Agency.  I may not have known to so quickly obtain early access services for Kiran, as a weeks-old medically fragile infant.  I would not have the inside scoop on everything available to help him through.  And now, as I start my college journey, I have ample opportunities to job shadow, many SLPs who are willing to offer guidance and advice, and perhaps even a foot in the door once I am able to work.

I am thankful.  I am thankful for the experiences I have had that have brought me to this point.  My adult life has not gone as expected – at all – in any area.  But it was preparing me for Kiran.  It was preparing me to be his mom, his teacher, his therapist, his advocate, his nurse, his biggest fan.

And as hard as this journey is – as dark as the days can be – as exhausted as I sometimes (often) feel – I know I am right where I am meant to be.  And I know I have the best people around me to support Kiran and me on this journey.

It’s a long road ahead – such a long, winding, confusing, exhausting road ahead – but we journey together.  And that togetherness is what makes the journey worth it.