Sometimes, my brain mixed with a long, solitary walk (with Kiran sleeping in the stroller)…is not a good combination.  The what ifs start to roll in.  I am sure I don’t even have to write them out.  Does anyone actually have their brain go to positive what ifs?  I wish, when left to its wandering, my brain would think things like “What if Kiran rocks his recovery, and we are on a plane home in three weeks?”  “What if he starts taking all of his food by mouth?”  “What if he catches up quickly on his development?”

But no.  Instead, I start thinking about all that could go wrong.  I think about having to face my worst fears.  I think about the fact there are many situations I haven’t even considered that may be even worse than my worst fears.  I think about what it might feel like to have to say goodbye.

So then, when I realize he has woken up, we sit together on a park bench.  We take mother-son selfies, listen to his special songs, talk, smile, and give lots and lots of kisses.

This adorable little man is only two days away from being nine months old!  

I truly feel every day with him is a gift we weren’t sure we would be given. I can’t believe how fast the months are flying by. 

We are officially 50 days out from open heart surgery. I have finally worked my way through my emotional block and started making some of the phone calls to Stanford I have been putting off. I feel there is so much to do between now and when we leave August 31st. Lots of logistics. 

Most importantly, though, we have a lot of loving to do!  ❤️❤️❤️

There are moments in life when things simply weigh heavily on my heart.  It seems there is so much loss, fear, pain, and longing in the world, and I feel it all today.

I had a lengthy conversation last night with a woman who has again become such a dear friend and encouraging presence in my life about how people respond to others’ pain.  I have actually had this conversation with another new friend recently as well.

People say stupid things.  As I am sitting in the darkness, in the heaviness of my reality, people say things that make me want to punch them in the throat.  (Not that I would ever do that, ever.)  People say things that make me want to respond in knee-jerk anger, out of the painfulness of the situation and their lack of understanding.  But, the thing is this: Largely, these people – they have the best of intentions.  They think they are helping.  They are doing the best they can, just like we all are.  They don’t know what to say.

Many of you read this blog.  I would venture to guess there aren’t many of you that haven’t experienced some sort of loss or deep pain in your life.  I think any of us that go through something so raw and real have a better understanding of others’ darkness, even if it looks completely different from our own.  At least we begin to understand that we may never understand another’s reality – and we understand there is nothing we can do or say to make them “feel better”.

I won’t speak for everyone, but these two women and I, at least, agree: The very best thing you can do when you are wanting to be a friend to someone hurting: Simply say – “That really sucks.”  Acknowledge the absolute crappiness of the situation.  Sit with them.  Listen.  DON’T say: “Everything is going to be okay.” because all I want to say is “How do you KNOW that!?!  It might not be!  In fact, it’s already NOT okay.”  I won’t go into all the other things I wish people wouldn’t say.  I simply want people to say “That sucks.”  And I want them to sit next to me in my darkness for awhile, trusting that eventually, I will come back into the light.

I always do.  But I need my space and time in the darkness, and it can’t be rushed.  In order to be a genuine, authentic person – I have to own my feelings, every day.  I have to trust that the love, the strength, and the peace will always be there, and I will always claw my way back to them.

So if you find me sitting in the dark, tears streaming down my face, incapable of giving you anything…please: Sit next to me, take my hand, say “This really sucks”, and just be with me for awhile.

We had a long day in Iowa City yesterday.  I was hopeful it would provide more answers than it did, but I feel it was another step in the right direction in regards to Kiran’s visual delays.

The genetic eye doctor confirmed, again, what we already know: Kiran is behind on his visual development.  Though his small pupil size may play a part, it is not the whole story.  Even when his eyes were dilated, he was not as visually adept as he should be.  She does want us to keep doing the eye drops (DARN!!!) to give him as much help as we can.

I cannot remember the name of the test, but we got a test done that measured how quickly the signal gets from his eyes to his brain and how strong the signal is.  This showed the speed is within the normal range, but the strength of the signal is quite low.  This could be due to a number of things: Perhaps there is an abnormality in the optic nerve or perhaps the occipital lobe is smaller than normal.  Unfortunately, we are unable (unwilling) to do any further testing because it would require him to go under anesthesia.  We don’t want to put him under this close to his heart surgery – the information we would glean would not be worth the risk involved.

We also had an ultrasound done of the eye.  This showed his eye structure is normal.  This made the doctor feel more confident that we wouldn’t do anything different now even if we had more information.  The decision to wait for further testing is a good one.

She also saw a cataract in his right eye, which is the eye that has the pupillary membranes (the strands that should have fallen away after birth but didn’t).  She doesn’t feel it is one that would require surgery – I think I understood it as it is on the surface of the eye and should fall away (or be able to be scraped away – I’m really not sure – too much info thrown at me in one day)….This didn’t seem particularly worrisome or important to the doctor.

And – this is somewhat interesting and terrifying all wrapped up as one emotion – Kiran’s specific genetic deletion is not on a database.  It is not found on a database of healthy, “normal” people, and it is not found on a database of people with defects or disorders.  This means little is known about it.  Due to this fact, she strongly urged my husband and me to leave a blood sample so they could test us for this deletion (We did so).  If one or both of us has this genetic deletion, it is not what is causing all of Kiran’s defects (heart, feet, vision).  If, however, neither of us has it, they will want to start taking a closer look at the genes surrounding the deletion to see if they can find out if it may be the cause.

It is fascinating to me.  Kiran may be the only known person with this very specific deletion.  I knew my boy was unique and special.

So – some answers but still no definitive ones.  We will go back in January to be seen by the genetic eye team again.

I wrote about the before when I was processing Diagnosis Day.  Today, when Kiran and I were reading books in his bedroom, I found the little journal I had started writing letters in as soon as I found out I was pregnant.  It was heartbreakingly beautiful to read to him what I had written.  The before is often a time of innocence and peace.

Dear Baby,

I have been waiting my whole life for you.  Your daddy, too.  We are surprised, overwhelmed, and so full of joy, upon discovering your presence.  We have decided to call you Jalebi, for now, because you are our sweet, sweet treat.  We couldn’t be happier, and you couldn’t be more wanted.

I love you already.

Love, Your Mom!

 

Dear Jalebi,

We got to see you today on the ultrasound.  The tiny flicker of your heartbeat stopped my breath.  You are so beautiful to me and your dad.  So precious.  We think about you all the time – Me, especially, because you’ve been making me feel so ill lately!

But it’s worth it all.  We can’t wait for this entire adventure to unfold.  Every new step will be treasured.

So much joy and love,

Mom

 

May 22, 2015

Dearest Jalebi,

We found out several weeks ago that you are a little boy!  We are looking forward to meeting you!  I can’t wait to see what you look like and who you become.

Some days now, it is so unreal.  I have been feeling more normal, and I am not showing a lot yet.  But I know you are in there, growing away.

I love you, more than words.

Love, Mom!

 

After Diagnosis Day, I stopped writing letters and started writing about our journey in this blog.  I’d like to think the entire thing is my love letter to Kiran.  I hope someday he can read his mother’s thoughts, fears, joys, heartaches…and just know how loved and cherished he is.  From the before – from the very moment we knew he existed – through the after and beyond.

For those blog readers who are not on Facebook:

As most of you have heard, Kiran’s first open heart surgery has been scheduled for September 7th. We had wristbands made that we would like people to wear on that date in support of Kiran and our family. 

We are asking $5 each. 25% of our profit will be donated to Help-a-Heart (https://help-a-heart.org), and the rest will go toward our traveling/lodging expenses for the surgery. 

Feel free to send me a message if you are interested. We are hoping to have people send us pictures of them wearing the wristbands on the day of the surgery – it will be a great way for us to feel connected and supported during the longest day of our lives!

When I clip Kiran’s nails, I don’t even attempt to keep the clippings together.  I just let them fly willy-nilly onto the family room carpet.

Sometimes I don’t give Kiran a bath, even when it’s bath day.

There have been days I have opted out of the second dosage of eye drops, because it is sometimes just too hard. (This has no significant medical bearing on him; don’t worry!)

Kiran has been known to sport his pajamas for an entire day after sleeping in them.  I do always put a fresh pair on before putting him to bed!

I take about two hours in the middle of the day, as often as I can, to drive to a location to take a walk with Kiran.  I could pretend that this is for him – he gets fresh air, gets to see outside, etc. – but really, it is for my own sanity.

I have never once felt guilty about leaving Kiran with a babysitter.  (This may be partially because we have the best babysitters ever!)

I never thought I could love someone this much.  I am not a perfect person or a perfect mother (I know, this comes as quite the shock to most of you!), but I know I am the mother Kiran needs.

 

One year ago today, everything changed.  There are moments in all of our lives that get bookmarked permanently.  Our lives are then divided into the “Before” and “After”.  The day my son was diagnosed with a CHD, in utero, is one of these dividers.

I had been to my anatomy ultrasound a few weeks prior.  My husband had taken time off work to be there with me.  I was told they wanted to redo the ultrasound with better equipment at a different clinic, because they weren’t able to get good pictures of his heart.  Nobody gave any indication that anything was wrong at this point, but I had my normal anxieties.

The day – this day, one year ago – that I went in for the second ultrasound, I tried to quell my fears.  Many people reassured me that it’s normal for the little ones to be wriggly and move around too much, and that it was probably nothing.  Don’t worry – I always say this is like saying “Don’t be Holly” – still, I tried.

I went by myself to this appointment.  The ultrasounds are long, and Arif had just taken a morning off work a few weeks back.  Neither one of us thought we would be getting any results this day, because they had also had us make an appointment with a maternal fetal medicine specialist the next day (In hindsight, this should have been a bigger clue that it was not nothing).

When the radiologist came in and said there was something wrong with my son’s heart (I have no idea the words she actually used), I am almost sure I went into a state of shock.  I remember she went on to explain a little bit.  I know, now, she told me it was Tetralogy of Fallot, but at the time, I just remembered it sounded french.  I literally feel like I couldn’t understand a word she was saying after her initial declaration.  She asked if I had any questions – how could I have questions when I couldn’t even breathe?  When I couldn’t wrap my head around anything that was being uttered?

I waited until the ultrasound tech and radiologist left the room before I burst into tears.  I called Arif and told him he needed to uber down to get me, because there was no way I could see to drive myself home.  I can only imagine the heartache and panic he must have felt, having to hear those words over the phone from his crying, heartbroken wife.

It has been a wild ride since that day.  Most of the roller coaster you have been able to read about in this blog.  I have learned to be as transparent as I can be, because, largely, I want all of you to know how congenital heart defects affect people.  I was so unaware and so clueless before this became my life.

I wasn’t expecting this date, June 18th, to affect me as it has been.  For ten days now, I have struggled with the anniversary of diagnosis day coming.  Much like my body, my heart, my mind knows when the anniversary of my brother’s death is approaching; so, too, did my soul know that this significant day drew near.

It has been a helluva year.  I have felt every emotion more intensely than ever before.  It has been simultaneously the most heartbreaking, most joyous, most frustrating, most courage-building, most terrifying, most reaffirming, MOST…year.

And we haven’t even had a single open heart surgery.

 

My husband gets all the credit for the title of this blog post.  After we got our big news from Stanford today, once Kiran woke up from his nap, Arif came in and told our son that we have his scar installation scheduled.  I love it!  It sounds much more exciting (and less terrifying) than open heart surgery.

So – yes – we have our true surgery date!  Stanford moved his surgery up, at the request of our local cardiologist, to Wednesday, September 7th.  The three of us will be traveling to California at the end of August, to be there for a Sept. 1st pre-op appointment and a Sept. 2nd cardiac cath.

My initial reaction was one of relief and joy.  I was hoping for a September date!  This is really wonderful news, because it is time.  He needs this surgery.  There is no way he would have remained stable until December.  It is a much more logical date to work with.  And now, we can start planning for our trip.  This is the part that helps me, because it is the piece of all of this I can control.  I can make lists and plan and organize to my heart’s content.

And then (mind you, all of this was during the three minute phone conversation with the patient coordinator at Stanford), I had to fight to keep the tears at bay.  It all hit me, and my stomach dropped.  It has never not been real, but man, now it’s REAL.  We have a date for open heart surgery.  It is a lot to take in.

Wednesday, September 7th.  84 days.  Our journey continues.