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.

Kiran had his first field trip – and first ride on a school bus – on Monday.  I got to chaperone, so I got to be with him while he had his new experiences.  It was the first time he’s ever been on a wheelchair lift to get into a vehicle, and the first time he has been transported in his wheelchair in a vehicle.

In true Kiran fashion, he was very stoic at first, but he decided he likes the bus.  He was looking out the window a lot, and smiling up at his mama a lot.

The field trip was to one of our favorite places: The WDM library!  We go frequently for story times, to check out books, or to play in the kids’ area.  The preschoolers got a special story time, complete with bubbles, and we got to tour the downstairs of the library, including the back room where we got to see the book sorting machine in action! (I didn’t even know this machine existed – even *I* learned something on the preschool field trip!)

It was a great trip.  Kiran and I were both worn out (Preschool teachers are saints, and he has some really excellent ones).

Today, we got to experience another first.  One I have been hoping for but was unsure would come: Kiran had his first playdate with a friend from school.  She has been a special friend to Kiran from the beginning and is definitely one of his favorites to play with at school.  We met her and her mom at the new children’s museum space.

I feel like I am learning so much with these firsts.  I am learning more about inclusion and what that looks like.  I am learning what friendship looks like for Kiran.  I am learning that sometimes my own assumptions or fears can get in the way.  I am learning to trust people’s intentions, and trust that others, too, can value Kiran, just as he is.

This friend certainly does.  I could cry thinking about how sweet she was with him today.  She did hand-over-hand with him with instruments, showing how to play each one and giving him a turn.  She performed puppet shows for him, which he absolutely loved.  She made “sandwiches” at one point, serving Kiran last with the sentiment “Save the best for last!”  She was just attentive and helpful and sweet, and she really values Kiran.

The friendship looks different – of course it does – but it’s still friendship.

Honestly, I didn’t know what it would look like or be like, for Kiran.  But I am learning too.  I am learning from his amazing teachers, his therapists, the volunteers and workers at Courage League, his classmates…

These are firsts for me, too.  And I’m paying close attention.

Dr. Seuss has always been very wise.  One of my favorite quotes from one of my favorite books of his (Oh, the Places You’ll Go!): “So be sure when you step, Step with care and great tact and remember that Life’s a Great Balancing Act.”

Balance means Kiran is sitting next to me in my bed right now, as I type this.  His hand is on my leg, and he is playing with his body, sitting back into the pile of pillows and pulling himself back upright to sitting.  He keeps putting his ear against the side, either because it’s cool and feels good or he likes to hear the clacking of the keys.  He has already tried to eat the laptop once.  He is watching me write.

Balance means fitting in self-care, even when it means I literally have to be accountable to another human being and have to put it in my calendar, as if it’s as important as all of the things on Kiran’s calendar (And it is.  I know.  It is, but I don’t treat it like it is.)

Balance means, after a day at preschool, a meeting with his school SLP right after, two therapies at Childserve this afternoon, and a very dedicated oral dinner practice time, we came downstairs to read.  Just to read.  I didn’t bring the button with “Turn” recorded on it.  I thought about it.  We “should” be working on it.  But balance means sometimes, we’ve worked enough on our goals for one day.  Balance means sometimes, I just want to snuggle up in bed and read some of my favorite books to my favorite human.

Next up: The Knowing Book by Rebecca Kai Dotlich.  This entire book is one of my favorites, but I will leave you with what may be my most favorite part: “Run often and fast, toward or away from something.  Trust yourself to know which.  And trust yourself to know when, by the chanting clocks that hang on walls of dreams.  This is called wise and this is called brave.”

Kiran is now lying down next to me, impatiently pulling at my sleeve.  As if he is saying – enough, mama, balance.

It’s time to read.

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.