I have been dragging my feet on writing this update post.  It’s even possible some of my avid readers (I do have some, right?  Guys….?) have been waiting to read more about this, since I posted a brief blurb on facebook over a week ago.

It all feels overwhelming and huge right now.

We finally felt heard at the Center for Disabilities and Development regarding Kiran’s communication.  Lack of, rather.  It is something we have been bringing up to our local team (who are great and are working toward solid speech goals with him) for some time now: our frustration and Kiran’s seemingly growing frustration with not being able to communicate.  He is non-verbal.  We have been attempting signs with him (somewhat inconsistently at times, I’ll admit), but he doesn’t seem to be getting anywhere with it.

I felt, though we have such a great team in place working with Kiran, like we weren’t getting anywhere quickly enough.  I didn’t understand the whole picture of the pieces that were being worked on.  And I feel like we finally got a destination – we finally have a plan, a map, work to do – something tangible.

A goal.

And it’s daunting.

The ultimate plan right now for Kiran is to see if we can get him on an assistive communication device.  There are several different options out there, and I honestly haven’t educated myself on them yet (I have to take things one step at a time sometimes).  Essentially, it will be some sort of system where Kiran could point to a picture to communicate an idea.

Some fairly newer research has been done that has identified 36 core words that can be used to communicate the most commonly used daily ideas.  Words like “More, Finished, Stop, Go, Turn”.  I used those five on purpose.  I think they may be the five we will be focusing on for the next few months before we follow up in Iowa City in July.  The plan is to focus on five of these core words using the picture associated with them.  At home, we have a basic little mack, which is a recordable button device.  Here’s what we are doing right now, at the start of this.

I put together a binder of the 36 pictures.  Kiran has the visually impaired set, so they are brightly colored on a black background.  Velcroed on top of these 36 pictures are cut-out versions of the small picture itself.  This is so I can take one picture at a time and velcro it to his button device.  I can then record the word on his device, and he can request the word by pushing his button – which will then say the word and we act on the word.

Right now, it’s a lot of repetition, and it requires a lot of patience.  It’s hard to try to incorporate it into our day at this point (granted, we have gotten this info only just over a week ago), so I have been setting aside specific periods of time to really work on it that make sense.  We use “more” during Kiran’s oral meal time, especially with puffs or veggie straws (which are only slightly more motivating than his pureed food), and we use it to request more mama singing (which is maybe the most motivating thing there is – for him).  We use “turn” when we are reading books, to request to turn to the next page.  We use “go” to request making a toy do something.

It feels good, to have a plan and a goal and work to focus on with communication.  I won’t lie.  It’s hard.  It’s hard to be patient.  It’s hard to have to be so repetitive.  It’s hard not knowing how much he gets, how much he will grasp, what he can learn.

But a very wise former member of Kiran’s team told me something I have never ever forgotten: “I always assume competence.”  So I meet Kiran where he is, and I work as if he can get to where we hope to go.  I think he can.  He continues to get somewhere, and he will show me the path.

I am an advocate for awareness and inclusivity.  Just coming out of heart month in February, I spread awareness for Kiran’s congenital heart defect daily.  His CHD is something I have fully embraced as part of who Kiran is, and I am vocal about it.

I realized, when a friend sent me something pertaining to one of Kiran’s brain abnormalities, the same cannot be said for that part of Kiran.

The reasons are plentiful.  Kiran’s heart defect is something I found out at 22 weeks pregnant.  I had time before he even arrived on the scene to learn and get comfortable with that.  I am in a great support group with other heart families who know, as it is related to CHD, the path I’ve walked.  With his heart defect, there was a clear plan in place.  Surgical procedures outlined – there was knowledge and a sense of where he needed to go with it.

The brain abnormalities simply aren’t that easy.  Though they do not have the same potentially life-threatening outcome the heart stuff has, they do alter his daily existence far more.  At least in the last few years.  I didn’t find out, with certainty, about Kiran’s special brain until May of 2018.  I haven’t even been sitting with it for a year yet.  I haven’t been able to connect or plug in with other families – nor do I even really know of any – that have similar brain stuff.  There is no clear plan.  Not only is there nothing to be done about Kiran’s brain, but no doctor can even tell me what exactly it will mean for Kiran.

Limbo is a place in which I have always felt uncomfortable.  Always.  And limbo is a place in which Kiran forces me to live, every day.  I know he will not be a typically developing child, but I have no idea at what point his skills will plateau.

It’s a really hard place, for me.  And I am in the headspace, now, that I know I need to sit with it for awhile.  Grieve, for awhile.  Then, acceptance will come.  It always does.

I will never understand why some days, for no tangible reason, just feel harder than others.  I am so emotional today about my life with Kiran.

School drop off and pick up are just lonely.  I struggle already with being an outgoing person, so I have to be in a certain headspace to force myself to initiate conversations.  I still do it frequently, but it doesn’t come easily or naturally.  And it doesn’t help that most of the other parents – moms, especially, which I find interesting – have put a bubble around us.  It’s like we have the plague, and they are worried Kiran is contagious.

My brain tells me they just aren’t sure how to interact with us.  I also don’t know how to bridge that gap, so understanding it doesn’t make it hurt any less.

I also grow cynical and wonder why I should even bother trying.  I don’t have any other children; no neurotypical children with which to find common ground.  I am Kiran’s mom only, and it’s my only experience being a parent.  I have next to nothing in common with the average parent of neurotypical kids.  If conversation ever went beyond the damn weather, I’m not even sure I could contribute.

Adult friendships are hard anyway, and I find this to be continually exhausting and painful.

I had an appointment today, and my esthetician, who usually simply leaves it as “How is your son doing?” decided to go deeper.  She asked if he communicates with signs.  So I explained where we are with his communication skills, which is also a difficult subject.  It’s hard to help someone who doesn’t know him at all or have any concept of his life so far understand who he is.  It’s painful for me to talk about his lack of communication ability.

And today was one of those days, at preschool pickup, watching all the other kids running to their parents, yelling “Mommy!” or “Daddy!”….I have just been on the verge of tears all day.

My absolute saving grace in all of this is I know these are my struggles.  They belong to me.  Kiran doesn’t struggle with these things.  He is happy to be around his classmates.  He has a few friends who play with him often, and the classroom environment is very inclusive.  He doesn’t seem to grasp – or care – that he is different.  He is happy, and he is loved.

Ultimately, that’s what matters.  I’m doing something right, even on the days I feel like I do everything wrong.  Even on the days that hurt like hell.  Even on the days I just wish our life could be different.

He is happy.  He is loved.  It’s a long road ahead, but we journey together.

 

I came away from Kiran’s GI appointment with more knowledge about granulation tissue – and with confirmation that is what we are dealing with, and it has moved on to the scarring stage. No other answers really to be had – why now, how to best prevent – we are doing what we should be. The granulation tissue is just his body’s way of healing what it perceives as a wound (the “unnatural” hole where his g-tube is placed). I know better what to look for, how to act, and when to be seen again. It was a constructive, productive appointment.

Swallow study. I have such a complicated response to it today. I realized, coming out of this appointment today, how much I let Kiran’s dad’s emotional reaction at the last swallow study affect me.

Our local feeding therapist made it, and I have thanked her immensely, both in person and immediately after via email. It is not lost on me how amazing she is, and as stated before, I will never take her dedication for granted. It was helpful to have her eyes on the study. She knows Kiran so well.

Kiran did great. He gave us a really good picture of what is going on. And it confirms what we learned the last swallow study. He needs to be on nectar thick liquids. He is at risk for silent aspiration with anything thinner. He also has some mild risk with crunchy/mixed textures, mainly because he likes to hold and lose them in his mouth.

Nothing changes. We continue on the path we are on. We offer only thickened water, purées, and meltable crunchies at home. And we need to get back in the habit of using his chest strap in his wheelchair while feeding him. We shouldn’t have ever stopped, probably, but sometimes those extra steps (he has so many) seem extra tedious when you’re unsure they are making a difference. It does. The swallow study showed us the difference his positioning makes.

So. Okay. Here we are. Still.

I feel I have come to accept that his g-tube may be a permanent fixture. This isn’t to say I’m giving up or we are stopping therapy – he is making progress, and we go where he leads. It just means I’ve made my peace with it. I can’t keep riding the emotional rollercoaster and putting all this pressure on meal times with the end goal of getting the g-tube out.

It’s just not my end goal anymore. If it happens someday, I will celebrate BIG! In the meantime, my goal is to just help Kiran safely enjoy food. That’s it. Whatever it is. One bite or 100, purée or someday actual bites of steak – whatever it looks like. Sometimes it means blending Oreos and milk and giving it via tube, because that’s a safe way to experience cookies and milk with my son.

I am okay. I am glad to have answers. I am thankful he took bites and drinks and swallowed so we could see what was going on clearly. I am glad we can continue to keep him safe.

It’s a long road ahead, but we journey together.

We had such a lovely two month reprieve.

On the road again, headed to a GI appointment to discuss granulation tissue. Kiran’s site doesn’t look concerning but the tissue is still present – we just have zero experience with this so hoping to educate ourselves today in general. Really hoping we don’t have to use silver nitrate to burn it off. That simply doesn’t sound fun for anyone involved.

The real dread has set in for our second appointment of the day: a swallow study. The last one did not go as expected, and we had to take some significant steps back in oral feeding.

I continue to be in awe of the amazing team we have in place for Kiran. His local feeding therapist, who has been working with him for the past two years, insisted she wanted to be present for this swallow study. She wants to be a more comforting presence (since Kiran knows her so well) and an extra set of eyes for us. Here’s the clincher: She is on maternity leave and traveling to Iowa City with her newborn. For Kiran. This was not something we asked of her or insisted upon.

Kiran’s team cares, and it blows me away. I am thankful and will never take it for granted. Some of the members fell into our laps; others we worked hard for – ALL of them are dedicated and passionate about what they do. They go the extra mile, and I am so amazed and humbled and grateful.

Kiran is so, so loved.

This is what heart month is all about, for those of us affected daily by congenital heart defects.  I write every day – or at least the equivalent of 28 topics – during the month of February in order to bring about awareness.

But why?  Why make people aware?  If you are not aware – and if you have no understanding about the prevalence, severity, and all-encompassing nature of CHDs – you don’t know how to support families like mine.  You don’t know where to give to help support research.  And without research, there will be no conquering.

We need a cure.  1 in 100 babies born have a heart defect.  This affects so many.

Bottom line: Kiran would not be here if those who came before us hadn’t fought: for awareness, for research, for a cure.  The heart world has come a long ways in recent history, but we have a long ways to go!

I say it a lot: Kiran will change the world.  And he is!  With my help and my voice, he is changing things.  We are conquering little battles in our lives, and we will keep fighting for the big ones.

Fight with us.  Bring about awareness.  Share my blog, share my posts about CHD, share the story of a brave little warrior who is changing the world.  Give money to organizations supporting pediatric heart research.

It’s a long road ahead, but we journey together.  Our work doesn’t stop because February is over.  Let’s fight to conquer CHD, one day at a time, together.

I don’t know what your future holds, little man.  I don’t know if you will ever walk on your own two feet without the help of assistive devices.  I don’t know if you will ever say “mama” or utter any words at all.  I don’t know if more diagnoses will be uncovered or if your lifetime will be tragically cut short by one already on your list.  I don’t know.

What I do know?  I am fighting for your future.  I never thought I would be this person, but I fight fiercely for you.  And I will continue to.  I will fight for your safety.  I will fight for your right to hold space in this world.  I will fight for accessibility for you.  I will fight and I will fight and I will fight.

I will never stop fighting for the best possible future for you.

My friendship post yesterday probably came off as a little harsh.  I will be honest – yet again – it has been a tough month.  I haven’t had a lot extra to give.  I haven’t been out of the house much.  I’ve been struggling with what I always call the darkness.  I’ve been simply downright depressed, to be honest.  Between illness and weather, it has been a brutal winter.  I feel like 2019 hasn’t been good to me.  Yet.

So despite my no bs approach to the concept of friendship, the truth is this: Every single person reading this makes up our community.  Everyone who cares enough to invest time in our story is a part of our community.  So many of you reach out with just the right thing I need to hear at the perfect moment.  Every time I feel like I have fallen down and there is no way I can possibly get back up yet again, your words provide the hand I need to grab hold of to get back on my feet.

I couldn’t do this without you.  Kiran is lucky to have so many people who love him, some who have never even met him.  I know he has a big cheerleading squad, all over the world, and it is heartwarming.

There is one very special community of people I could never do this without: The Heart Moms.  I would be lost without them.  Nobody knows my story as well as the others who are living similar ones.  The ladies who have gone before and can offer insight, humor, empathy…I could never thank them enough.  It is (I believe) the second ever blog post I wrote on here, all about the group you never wanted to be a part of but couldn’t imagine living without since you are.  I never wanted to be here, in this community of heart moms, but man, I tell you what: Heart moms love with a fiercer love than any I’ve ever witnessed.  Maybe it’s because we are all about the heart.  It changes something in us, when we have to let our little one’s hearts be operated on.

Thank you for being here.  All of you.  Thank you for loving us so well.  Thank you for educating yourselves and sharing our story with others – keep doing it!  This community means the world to me, and I’d be lost without it.

It may seem non-traditional, and a bit backwards, but my son is my inspiration.  Kiran has taught me more about strength, perseverance, and character than anyone I have ever met.

Despite his list of challenges growing and growing and growing over these past three years, Kiran’s determination and will have remained the same.  He, too, keeps growing and growing and growing.  He pushes forward, works hard with every therapy exercise, and has a smile on his face through most of it.

What I can never get over, though, is his joy.  And his desire to spread that joy, to share it with me and with others.  Even when he had a fever and was decidedly miserable, he would try to give me the occasional smile or giggle.  He wants to see the people around him happy, and he just radiates that happiness.

All.  The.  Time.

I know he doesn’t know anything different than the life he is living, but he lives it with such grace.  He has such a good attitude, a kind spirit, a never-give-up will…. He is just so strong.  He inspires me every single day to be better, to be more like him, to give him everything he needs to be the best.

I can’t even express how much I love him – and what an inspiration he is to so many people who know him.  I have no idea how I got so lucky to be his mom – to be his advocate – to be his voice – to be his biggest fan.  But I know I will never win the lottery, because all my luck was used up getting to have Kiran as my son.

Luckiest.  Mama.  Ever.