I was blessed with an unhealthy baby.  I was blessed with a child with disabilities.

I am blessed to be Kiran’s mom.

I know perspective is everything.  I know, because I have been in the before.  I know how terrifying and overwhelming it was when we initially heard about Kiran’s heart defect.  How terrifying and overwhelming each additional concern, fear, diagnosis has been.

But my heart absolutely BREAKS when I read comments like “We just want the baby to be healthy.” or “We had a scare, but in the end, we were blessed with a healthy baby.” or any other take on the same idea.

I get it.  I do.  I have written about it before.  We all want our babies to be healthy.  No one (that I know of, anyway) prays to be blessed with an unhealthy child.  We never ask for life to be more challenging or for grief to be more complicated.

But to any mom out there, right now, facing what feels like the end of the world, in the form of an uncertainty or a greater risk or an absolute diagnosis……I PROMISE YOU, you will be blessed and changed in ways you can’t even imagine right now.  I PROMISE YOU, this tiny human will bring you extraordinary joy.  I PROMISE YOU, every moment that brings the darkness, the hard, the fall-on-your-knees-kind-of-grief WILL BE WORTH IT.

I know, because I have been where you’re sitting, and I have been to hell and back multiple times in the last four years.  I am the first to tell you how hard it can be, but I am also the one to tell you, with absolute certainty:

I wouldn’t change a damn thing.

It’s a long road ahead, but we journey together.  Together, with Kiran, is where I was born to be.  He is what makes the hard road worth traveling.

Oh, Mama, I promise you.

Kiran’s genetic appointment yesterday did not give us a lot of new information.  We went over his whole exome sequence results in person (We had previously discussed only over the phone).  We updated the doctor on his progress in the last year, and she did a quick exam.  And, of course, took the time to answer all of our questions.

There was a noticeable difference in the geneticist’s enthusiasm and confidence that this candidate gene finding does explain Kiran’s diagnoses.  She strongly, strongly suspects this is his overarching diagnosis.  The genetic counselor, Kiran’s regular one (who was on maternity leave so it was someone different yesterday – everybody’s having babies!), was far more cautious in how she spoke to us about his results over the phone months ago.

It is exciting to think we may have found our answer, and it is exciting (though has its frustrations) that Kiran is one of only six in the world with a misspelling in this gene, RAB11B.  I am hopeful further research studies will be done he can contribute to, and I am hopeful we can connect with some of the other families using Genome Connect.

Genetics is still a bit beyond my grasp of understanding, but the most important piece of information, for me, was the answer to my question: For a misspelling like Kiran has, when does the genetic code transfer?  At what point in the process of pregnancy/development did this mutation occur?

Because his misspelling is evident in all of his cells (again, this is a bit beyond me, but this is how the doc said it), this would have happened at the very, VERY beginning.  As in, it happened in the sperm or the egg (no way of knowing which) prior to conception.

I have heard, from many doctors, throughout the course of Kiran’s many diagnoses, that none of this is my fault.  Nothing I did or didn’t do during pregnancy caused this or made Kiran the way he is.  And it doesn’t matter that I have heard that, because I still carry the guilt and the what ifs with me.

But this finally absolves me of my guilt.  If it happened at the very beginning, when the genetic code was transferred to either the sperm or the egg, no environmental influence altered the course of Kiran’s development.  It was a random genetic misspelling.  The doctor said the average person has around seven; it’s just that most of them are benign.

But for Kiran, in gene RAB11B, location 64, what should have been a G is an A.  It’s a G in my genetic makeup; it’s a G in his dad’s genetic makeup.  It was simply a fluke.  A misspelling of ONE letter in ONE location…that apparently affected every cell.  And, in the doctor’s words, compared with the other kids who have this candidate gene mutation, he has more “impressive” visual issues, and he really “leveled up” with the complex heart problems.

So maybe he did get some overachiever tendencies from me….

There have been several topics I have wanted to write about through the course of today.  Some, I will eventually write about.  Others, I intentionally do not put out into the world.  The most important one, at this moment?

I want to be a mom.

I have been in a hard-to-describe place in the last couple of months.  It has been what I have deemed “the darkness” at times, it has certainly been exhaustion, it has been grief.

It has been questioning.

I struggle, often, with balance.  And the big, over-arching question I have been asking myself these past two months is this: How do I balance facilitating Kiran’s growth and improvement while ALSO accepting him and enjoying him for who he is, right now?  And at what point do I stop pushing and pushing and pushing so hard and just BE with my son?

I want to be a mom.

I am so many things for Kiran.  I am his caretaker, his mobility, his nourishment, his therapist, his nurse, his chauffeur, his teacher.  Days go by where I am either fulfilling all of these roles or I am feeling guilty because I have missed one or several.

I want to be a mom.

I think I am approaching a point, now, where the balance needs to tip in the other direction.  Boundaries need to be placed.  I don’t want to spend the majority of my time working on this goal or that goal while also finding the time to do all the basic daily care tasks Kiran requires.

I. Want. To. Be. His. MOM.

Our mother’s day getaway to Kansas City was a success!  I often get bogged down with logistics and anxieties – and it IS quite the process to pack up everything Kiran requires for feeding, mobility, sleeping, etc – but things really went very well.

My confidence grew.

It definitely helped to have an extra set of hands.  Although I know I *could* take Kiran away for a weekend by myself, I also know it’s nice to not *have* to always be the one lifting the wheelchair in and out of the vehicle, and it’s nice to know I can shower in the hotel room with a pair of eyes on Kiran.  And – let’s be honest – I love not having to drive/navigate a city I don’t know well by myself too!

Some things I learned:

Sleeping in a hotel room is doable.  Kiran had a queen bed all to himself, with pillows strategically stacked around him to keep him safe.  He isn’t a big mover and shaker, so thankfully, at least at this point, I don’t have serious concerns about him falling out of bed.  Friday night, he definitely thought it was cool we were right there with him – every so often, his head would pop up as if to say “Hey, guys, what’s going on” – but by Saturday night, he was so sleepy, he slept normally.

I have never been a person who unpacks fully for a weekend, but with Kiran, it’s necessary to take the time to unpack and get things set up.  It makes life a lot easier to create a diaper changing station in the room, have his clothes unpacked, have his nighttime brace easily accessible, have his syringes/food all in the fridge (obviously)…

Grief is going to well up inside me at random moments – even really good moments.  While we were in line waiting to go into the children’s theater for the show, Beat Bugs – the main event of our trip – all the extra steps we are required to take for him to enjoy a show caused the tears to come.  I hate crying in front of people, and I especially hate crying in public.  But sometimes, the tears just happen, whether I want them to or not.  I was thankfully able to keep them in my eyeballs, but I got emotional.  We have to call ahead to the box office and make sure we have accessible seating, we have to check in when we arrive, and we have to be led to a very noticeable special section.  And for me, that sometimes just feels like a lot.  I am still getting used to the fact Kiran will be noticed everywhere we go.  Gone are the days of Wallflower Holly.  It is one of the biggest daily challenges for me, personally.  I am growing, but sometimes, I still grieve the “normal” I envisioned.

Along with this – my anxieties and desire to just blend in and not cause anyone extra work or discomfort – I learned that it IS doable to take Kiran to the types of restaurants I like to visit.  I am talking the hole-in-the-wall, small spaces restaurants.  I am very intentional about not being apologetic or asking – I will say something like “Where can I put this chair so I can pull him up to the table?” – because people need to understand (*I* need to understand and believe and advocate for) Kiran is allowed to take up space in the world.  This is hard for me.  Not because I don’t believe it, but because it takes a lot out of me, emotionally and mentally, to always feel uncomfortable in these situations.

It goes along with everything I want for Kiran in life.  In some ways, especially for me, it would be easier to just hide out at home.  It would require less planning, less effort, less anxiety-inducing situations, less accessibility research, less….

But I want Kiran to live LIFE.  I want him to have these experiences.  I love that I am able to share with him my love of live theater.  And music.  And fun restaurants (At one place, he got to taste the sausage gravy and got to have a fancy juice in his tube with me).

Overall, I am recognizing the areas in which I struggle, but I am also taking time to recognize I AM growing.  And I know, for Kiran, I will keep doing the work.  Every day.

We had a great trip.  I am still recovering from the exhaustion.  But I think Mother’s Day weekends away might become an annual tradition for us.  It was so worth it.

Sometimes, looking back, I wonder how in the world I have survived Kiran’s life so far. These 3 1/2 years have been chock-full of hard news, large joys, heart-stopping moments, gut-wrenching tears, big lessons, and lots of fear.

One year ago, tomorrow, Kiran finally had his brain MRI, revealing what we already suspected: Brain abnormalities. We know, now, our hopes for Kiran to “catch up to his peers” and “live a typical life” are unattainable.

We have no idea when his skills may plateau or what he will be capable of learning. We have no idea if he will need his wheelchair for a short while or forever. We have no idea if our communication goals will work for him, or if we will always be guessing everything he wants to express.

The unknown is the hardest pill for me to swallow, one year into knowing what we know. I wish I could have a sense of what to expect for his life, so I could prepare. So I could make the best decisions for him. So I could, once again (and maybe a final time?) go through the cycle of grief and acceptance and move forward.

But it’s one step at a time. Always. Kiran time. And I have to force myself to stay in this moment, today, and meet him where he is. Support him on where he’s going.

My mama heart has been struggling lately. Just in the sadness, right now. Sometimes, all the hard overwhelms, and I struggle to find all the joy.

But it is there. Every day. When he hugs me tight and pats my back. When he reaches into a bin and pulls out a block during independent play time. When he plays our game of clapping hands and then patting my hands on repeat. When he smiles and gets excited and laughs. When he reaches for the appropriate word picture multiple times in a row while playing (He wanted “more”). When he grabs his purée pouch off his tray and, more than once, brings it to his mouth correctly, wanting to try a new method of eating.

So many seemingly small joys and celebrations. He’s learning. He’s happy. He’s loved. He’s a wonder to behold. He’s Kiran.

We journey together. And I’ll survive today too.

I didn’t think I had PTSD or any sort of strong emotional anxiety reaction when it came to the hospital.  Which I suppose, given we have spent any time at all in the hospital for my son at age 3 1/2, I should think that I would.  But I am always feeling so gosh darn thankful and lucky and blessed (because we are) at how LITTLE time we have spent in the hospital, given his heart condition especially.

And then I’m minding my own, binge-watching a Netflix show on a Saturday night, and there is a scene with a small baby in a hospital, and a mom – a fierce mama bear, like we hospital moms tend to be – refusing to get out of the hospital crib, hospital policy be damned.

And I’m crying.  I mean, tears streaming down my face, crying.

And it spirals for me, tonight, because Kiran has already cried out for me once, and I have been in his room after bedtime.  And I was already struggling with the fact that I always have to guess what might be wrong.  I don’t know if his throat hurts or he has a tummy ache or if he just is bored or lonely or if he wants Cuddle Bear or just wants my company or he’s playing me for a fool and doesn’t want to be in bed.

I never know if I’m doing what he needs, what he wants, when he cries out for me.  And he so rarely cries out for me anyway, which I think makes it even harder.

People have this thing they like to say to me: YOU are the perfect mom for Kiran.  But how can they know?  How can I know?  I never know if I am what he needs, what he wants.  I am always guessing, and the guessing grows heavy sometimes.

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.

 

 

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.

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.