2019 has not been the year I had hoped it would be, and we are almost halfway through already.  Illness and challenges and now, the anxiety of starting online college courses, have worn me down.

I am finding it challenging to turn my brain off at night recently, and I am up far too late, given my 6 am wake-up call every morning.  I am finding it challenging to get out of bed in the morning, because I am overwhelmed immediately with everything Kiran needs first thing.

And yet, he is the reason I get out of bed every morning.

It is not going to be an easy summer.  I know that already, and we are only one week in.  I am determined to get out and find our place in the world, but it is challenging.  We spent a good part of our morning at the inclusive park, and it took a lot out of me.  I was completely ignored by all the other moms/caregivers there, and Kiran got one single hello from a mom.  Two kids (siblings) did come over and ride on the merry-go-round with him and asked some questions and talked to us.  Other kids just stared, and I would say hello or ask if they wanted a turn on whatever it was we were doing.

I have gotten better at that – responding to the stares from the kids – but it is still hard for me that the adults all ignore us.  Or they call their kids away from us when they are attempting interaction.

I spend my days with my sweet, charming, non-verbal son…and it gets lonely.  And these experiences make it that much more isolating.  But I am going to grow.

Kiran and I – just the two of us – went down to the music at Valley Junction last night.  I pushed his chair while carrying my chair, and we made our way through the crowd okay.  We were ignored there too.  Not a single person interacted with us, even when Kiran got into the music and clapped and made his adorable (biased, maybe, but still) excited sounds.

I have spent most of my life feeling pretty invisible – and even finding comfort next to the wall – but this is a different kind of invisibility.  Because we are SO visible.  With his chair, with his noises, with his constant seeking of attention (because PEOPLE are his greatest motivator; he is the most social kid!)… We are so visible, I don’t understand how we still aren’t SEEN.

I feel another painful growth spurt coming on, this summer, for me.  So my butt will keep getting out of bed in the morning, and I will keep going.  Kiran deserves a great summer, and I’m going to give him the best I can….I just haven’t figured out how the hell I’m going to add school for me into that balance.

I am exhausted.  2019 has not been good to our family, health-wise.  Kiran has battled illnesses, and I have inevitably caught them as he is finally getting healthy.  It makes it all last longer – when he’s sick for an entire week and then I catch it and am sick for several days after he’s well again.

But, through all of these illnesses and doctor visits, he has always checked out fine.  Nothing scary, no hospital trips, nothing that required medication beyond fever reducer, rest, fluids.

Until this week.

It took me a bit by surprise.  I am always the worst-case-scenario mom in my brain, but a part of me always figures he will check out fine.  Because again, he has so many times, even though I have always thought “Oh my gosh, what if he ends up in the hospital.”

Kiran and I – and actually Kiran’s dad, too – have been battling some viral stuff (possibly), seasonal allergies, and a darn cough since Easter (the week before, even, for Kiran).  So for a month or more, we have had this hanging-on cough.  Kiran’s has been intermittent and never concerning, until Saturday afternoon.  I noticed it was becoming more frequent and sounded deeper in his chest.

It was keeping him up Saturday night, too.  After going into his room four times in two hours after bedtime, I brought him to bed with me.  I’m glad I did, because he woke up with a solid fever in the middle of the night.  He also seemed to have chills.

My worst case scenario thought?  What if it’s pneumonia?  The cough has been around, but the fever and chills were new.  With the cough, I had already discussed with Kiran’s dad that I thought we should see his pediatrician again Monday (I say again, because we have been in her office 2-3 times to have lungs checked out during the duration of this cough already).  Fever and chills meant we headed to urgent care Sunday morning.

Kiran did so well at this appointment.  It was an unfamiliar clinic and doctor, and he had to have a chest x-ray and get his finger poked for a white blood cell count, but he was a rockstar patient anyway.  And this time, he didn’t check out okay.  We weren’t just sent home, with instructions to keep doing what we were already doing.

This time, it was pneumonia, and we were told he would need to be admitted to the hospital for IV antibiotics.

If all of this had to happen – and Kiran had to be sick with pneumonia – I can say, now, I am glad we were told to go to the ER.  I am glad we were told we would have to be admitted (especially since we weren’t!), because it forced Kiran’s dad and I to make some real-life decisions about what has only been a hypothetical for so long (It’s been awhile since we have had to make a decision about which hospital).

For reasons I won’t get into, we have made a very firm decision that we don’t wish Kiran to ever be hospitalized at a particular local hospital.  This is challenging, however, because this hospital has the pediatric cardiologists, and the other local hospital does not.  We were told the local hospital we wanted to go to may not admit Kiran due to his heart condition and that they would need to transfer him.

We opted to go to the ER there anyway, and we made it clear that if he needed transferred, we would transfer to Iowa City hospital because all of his specialists (including his cardiologist) are there.

We learned a lot about how this is going to work – and that it does work.  I am glad that in a non-emergent situation, we could figure out that it is possible (and quite pleasant!) to have our local hospital of choice be our touchstone here.  We have Iowa City transferring all of Kiran’s medical records to them, so they have his extensive medical history.

That has been a worry for me for so long.  How it would all work (especially since his pediatrician, who we LOVE, is associated with the other local hospital), if we were making the best decision for Kiran, etc.  I am glad we could get those worries alleviated in a situation like this, rather than a situation where Kiran actually had to be hospitalized or it was something serious.

Also, I find it a bit funny that I don’t think of pneumonia as “something serious”.  Not that I don’t take it seriously – I absolutely do – but my comfort level has risen tremendously with illnesses and medical situations in the last four years.  The ER doctor – who was absolutely fantastic and took a lot of time with us, answering questions, explaining the situation, we never felt rushed by her – made sure we were comfortable taking him home.

Two years ago, I probably wouldn’t have been comfortable bringing him home after a day like that.  I probably would’ve wanted a hospital admission, at least for the night.  But it was a no-brainer on Sunday.  Absolutely, we are comfortable, and absolutely, he should be able to rest and recover at home.

But I am exhausted.

 

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.