This season in our lives is about to come to a close.  The hospital where Kiran was born sent us home with all kinds of information about “interstage” – this time period before what we have always known is a necessary surgery.  We have made it this far.  Nine and a half months.  More ER visits than I cared to keep track of – I would say a handful, minimum.  Two hospitalizations, after his initial stay in the hospital from birth, one unplanned, one planned.  One cardiac catheterization, one surgery to place a g-tube.  A million and a half pediatrician appointments, cardiology appointments, gi appointments, orthopedic appointments, home health nurse visits,  vision appointments,  physical therapy sessions, visual therapy sessions, occupational therapy sessions….

We have made it.  As his parents, we have done our job during this interstage period.  We managed to make it nine and a half months.  Our precious baby boy is alive.  He is gaining weight.  He is developing, slowly … but steadily, at his own pace, in his own way.  He is stable.  He is happy and smiling and sweet and oh.  so.  precious.

I know I have written about this before, but we have developed a rhythm to our days, our weeks…we have become so good, now, finally, at incorporating Kiran into our lives.  We have figured out how to quickly pack up everything he needs to go for a lengthy visit at Nana and Papa’s or a friend’s house – or to go to an appointment two hours away.  I can pack his diaper bag for a quick outing without even thinking about it – with or without a feeding, depending on the time of day and length of outing.

I have finally, finally grown comfortable in this “interstage” period.  I’ve got this down.  Even with all the changes that have been thrown our way – with all the new skills I have had to learn.  Today, right now, I am confident and comfortable in caring for my son.  I am loving summer.  I love going out to events, taking him for walks, being less worried and crazy about germs and illness….

I.  Don’t.  Want.  To.

I don’t want to go back to hospital living.  I have hardly even gotten a taste of it compared to what is to come with this surgery.  I am not looking forward to it.

I don’t want to go back into cold and flu season.  I don’t want to have to be stuck inside, unable to even take him to the grocery store because a cold, especially when recovering from open heart surgery, can absolutely land him in the hospital.

A billion emotions pass through my body every single day as we approach this surgery.  Today, right now, it’s that I don’t want to give up this beautiful life we are living with our son.  I am scared of how it will all change.  I am scared of how HE may change.

I am trying to embrace the “I don’t want to” feeling by enjoying every moment.  I have slowed down with Kiran a lot the last couple of days.  I have savored the laughs and the snuggles.  I have said to hell with the housework and chores – I go like crazy when he’s napping, but when he’s awake, I’m enjoying him.  We are being intentional about giving ourselves some nights out to recharge – and also, honestly, because I don’t know how long it will take post-surgery for me to feel comfortable leaving him with a babysitter again (Even though, as I’ve said before, we have the best babysitters – and they are new nurses, no less….)

And – tomorrow, we are taking Kiran to the zoo.  I have absolutely no idea how much he will get out of it, but I have been wanting to take him.  I want him to have that experience.  And one of these soon days, I am finally putting up his little pool.  I still haven’t gotten out to buy a new swimsuit but so what?  If I have to sit in it in my clothes with him, I will.  I want him to splash and play and laugh and know what it’s like to sit outside on a sunny day in a cool pool.  On his ten month birthday, (I got the ok from the pediatrician), I am letting him try a bite of vanilla ice cream.  I don’t know why these are the things that are important to me, but I want him to experience ice cream.

I guess you could call it a bucket list.  It is true it is wrapped up in and around my fears of losing him….

But no matter what, I want to experience life fully with him.  I want to teach him to see and taste and feel and hear and smell with everything he is.

We are going into a difficult season.  We are entering into a new world.  None of us will come out of this experience the same.  I don’t pretend to know how we will be different…I just know we will be.  So I am going to savor the moments right now, when we are in this season.  I am going to do my best to make sure we are all entering this new season well-rested, filled up with joy, and as strong as we can be.

This song, The Fighter by Gym Class Heroes, Kiran’s song I picked for him in utero, still says it better than I can.  Everything I am trying to say can be summed up in one line, like it or not: “Gonna live life till we’re dead.”

I love that line.  It’s what we should all be doing.  It’s what I have always been striving for.  To LIVE LIFE.  33 days until surgery.  We’ve got a lot of living to do.

 

September 7.  A Wednesday.  A day I’m looking forward to and a day I wish would never come.  A day that is taking weeks to plan for.  A day that will affect our lives for weeks/months/years to come.

My grandson, Kiran, was born with a congenital heart defect.  His is a critical, complicated diagnosis.  We have known he would be facing open heart surgery since before he was even born.  Now that day is almost here.  September 7.

I am so grateful to my friends and co-workers who have rallied around us.  So many of you are faithfully praying daily for Kiran as well as praying for those of us who love him.  I’m touched by how many of you regularly ask me about how he is doing, how Holly and Arif are doing, and even how Denny and I are doing.  It is hard…so hard.  I wish with every fiber of my being that September 7 did not have to happen.  But it does…

Please join me in praying for September 7.  Pray that Kiran will remain healthy before the surgery.  Pray that our planning and our travels go smoothly and timely.  Pray that Holly and Arif will be on the top of the waiting list at the Ronald McDonald House, or that other appropriate, inexpensive housing is found.  Pray for Dr. Frank Hanley and his surgical team, and the staff of Lucile Packard Children’s Hospital at Stanford University.  Pray for wisdom, for clarity of mind, for steadiness of hands.  Pray for the stamina they need for what we know is a 12-14 hour surgery with no respite.  Pray that the team are able to successfully reroute the misdirected/malformed blood vessels to restore the normal flow from lungs to heart, so they then can repair his heart in this same surgery so there doesn’t have to be another one.  Pray for the nurses and the staff in the PCICU that will minister to Kiran after the surgery.  Pray that they will be observant and diligent in his care.  Pray that Kiran will recover quickly with no complications.

Pray for peace and comfort for Holly and Arif, Denny and me.  We need to feel God’s presence and we need you to pray for us when we won’t even have the words.  Please send us texts, emails, facebook messages on September 7.  I know we will appreciate the distractions as we wait for what will seem an eternity.  If you donated for a Keen on Kiran wristband, please wear it on that day and send us pictures…and thank you again for supporting him in that way.

If I could, I would give him my heart…but he already has it.

Philippians 4:6-7 “The Lord is at hand, do not be anxious about anything, but in everything by prayer and supplication let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.”

Thank You for your prayers, care, and love – we are blessed.

Giving God the Glory,

Jeri aka Nana J

I spend all of my time writing about what is different about Kiran’s care – how motherhood, for me, is far from what I expected.  And it is.  A lot of the aspects of daily life are very different than if he were a healthy boy.

This morning, however, I was reminded: I get the regular baby stuff too.  I get the mornings when I give him his bath first thing and am feeling so accomplished…and then, not only does he cough and throw up most of his rice cereal at breakfast, but he also proceeds to have a major blowout.  And, like any regular mom of a regular baby, I wonder: Why do I even bother with the baths!?!

I get the parties at 2 a.m., when I am begging him to please just go to sleep because Mommy is tired and his 6 a.m. party is only four hours away.

I get the hair pulling, the punching, the constant beating up.

I love the regular stuff.  I don’t think about it as much – but it is there.  It is true when you have a fragile child, your perspective is different…but it doesn’t make me an angel.  I am still human.  I still get sleep-deprived and frustrated by the regular stuff.  Blowouts aren’t cute.  And sometimes I can keep my perspective and cherish the middle-of-the-night bash, but sometimes I can’t.

Today – right now – now that he is cleaned up and sleeping peacefully – I am cherishing it.  All of it.  Every hair pull, nasty diaper change, early morning vomit….

I am just thankful for the regular stuff today.

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!