I am sitting in my son’s room, pumping his last bottle of the day through his NG tube while he sleeps. 

I am so done with the NG tube. It is time to get the G tube. I know this. We are ready. More importantly, he is ready. He is so frustrated by the tube in his nose and the tape on his face. It’s just time. 

Selfishly, I don’t want to go back into the hospital. We haven’t been admitted to the hospital since January. We have been so incredibly lucky. 

I dread packing for the hospital. I dread having Kiran hooked up to all the wires and machines in the hospital. I dread the waiting during surgery, the anxiety I am sure to feel. I dread sleeping on the uncomfortable couch, hearing every alarm, waking up every time the nurse comes in. 

It is for his good, and it is a necessary next step. But I hold so much dread in my heart for next week. I look at him sleeping peacefully in his bed at home, and I want to weep. For him, for my husband, for all who love him, for me. 

It’s what I’ve always wanted to be.  Since I can remember, the only thing I could say with absolute certainty that I wanted in this life was to be a mother.  And this year, I get to celebrate having the most amazing little boy in my life.

Motherhood is not what I expected.  That is the understatement of the century.  I could have never predicted my life looking like it looks.  I would have never thought our days would be filled with medical appointments and therapy sessions.  I would have never guessed I’d be excited to learn he’s reached half of his four month milestones at six months of age.  I never would have imagined I’d be planning hospital stays – never thought I’d become an expert at what to pack for these stays.  I never thought our normal would be to have our baby hooked up to a machine every night, wearing a brace on his feet every night, having a feeding tube constantly taped to his face.

It is not what I expected, but it is everything I dreamed of.  The love I feel for Kiran is beyond any kind of love I have ever felt before.  If I could take on his challenges for him – if I could somehow take all of his pain upon myself – I wouldn’t even need a second to decide to do it.  I would jump in front of a bullet for him.  I would give up every comfort of this life if I could just make him healthy.

So – yes – motherhood is hard.  Being a mother to a medically fragile, special needs child is extremely hard.  I never sugar coat this fact, and I never will.  But I will also never forget – I will always come back to – it all being worth it.  Kiran is worth all the hard in the world.  I am so amazed by him every single day.  It takes so much effort for him to simply stay alive – to breathe, for his heart to beat – but he still manages to smile and laugh and talk to us.  He still tries to do all the things his mean mommy makes him practice, like tummy time and sitting.  He is just a strong little man.

I am just so darn lucky I get to be his mom.  I am thankful.

We have had a quiet few weeks.  It has been beautiful.  To relax; to enjoy Kiran.  To relish every smile, every laugh … He’s been sick.  We’ve been watching his breathing.  There are always medical concerns, and I am often on high alert … but we haven’t been to the ER.  We haven’t had any major news bulletins.

It was the calm.  I love the calm.

This morning has been overwhelming.  In just the couple of hours since I posted the eye update, life has changed for us.  I have always been so amazed by how moments can change the trajectory you’re on.  Words can make your heart stop.

Perhaps I am being too dramatic, but it all feels very dramatic to me, right now.

I scheduled Kiran’s g-tube surgery this morning.  I thought this would be the big news of the day.  May 18th, two weeks from today, he will be put under anesthesia and have a g-tube placed.  As soon as I heard the date, my heart started racing.  It is time – we know it is the right thing for him – but it’s in two weeks!  Anytime Kiran is put under anesthesia (this will only be his second time, thank goodness!), it is risky.  It is scary.  It will be a hospital stay, likely 2-3 days if everything goes well in recovery.  It will be a new skill to learn.  Another change.  Another procedure for Kiran to endure.

And then I got an unexpected voicemail from the eye doctor in Iowa City, wanting to discuss something he found in Kiran’s genetic results.  We knew Kiran had a minor deletion.  It is a band on a chromosome that not much is known about, so it didn’t really give us any new information.  We simply know there is a genetic abnormality, a small deletion, but we don’t know what it means.

Apparently, this small part that is missing is near a gene that causes brain malformations.  This could be a very real possibility for Kiran and could explain what is going on with his vision.

Let me stop for a second.  Those are the words that changed things for me.  No mother wants to hear the words “brain malformations” when talking about her child.  It matters not that I have known all along this could be an issue we would face.  It doesn’t matter that I have suspected brain issues from the beginning – a mother’s sense, perhaps – none of that matters.  When you actually hear a doctor tell you it is a possibility the structure of your child’s brain may be abnormal…the world stops.

I immediately come back to this truth: He is still my Kiran.  He is who he is.  If his brain is malformed, it has been that way from the beginning.  It doesn’t change who he is.  He is my brave, sweet fighter.  It certainly doesn’t change my love for him.

It does, however, scare the hell outta me.  It does overwhelm me.  It does put me back in that place where I wonder: Can I do this?

I can.  And I will.  It makes getting that MRI ordered, hopefully while he is already under for g-tube surgery, even more important.  We need to see if there is something going on in his brain.  It won’t change who he is, but it will help us help him.  It will help us prepare for his future – it will help us know what that future will look like.

I am scared.  I am scared for him to be put under anesthesia.  I am scared to find out news about his brain.  I am scared of how everything will pan out with heart surgery timing at Stanford.  I’m terrified.  This morning, right now, in this moment – that’s where I am.

Overwhelmed.  Terrified.  And sad.

This.  Is.  Hard.

It is always a journey.  Every time we have a big appointment that I have been concerned about – like vision yesterday – I think that answers will come.  I think that if I can just get to that appointment, I will know what’s going on with my baby boy.  I will know what comes next.  I somehow always forget that oftentimes answers simply create more questions.  Kiran’s medical journey is not one of clear-cut answers.

We really didn’t learn much.  He has made progress – we have seen that – but he still has the nystagmus (shakiness) in his eyes.  This is okay for a newborn, but by now, it should be gone.  It’s not.  The question we haven’t answered yet is: is the shakiness there because his vision is poor or is there a communication problem with the brain?

His retina looks normal, but the eye doctor wants us to have a couple of tests done to rule out vision problems where the retina would appear normal but may not be.  We will do this in early July when we have an appointment in the genetic eye clinic.

If we can somehow coordinate getting an MRI done while Kiran is already under anesthesia for his g-tube surgery (not sure yet how plausible this is), he would like to get brain imaging.  He is not sure it would be worth it otherwise – it would give us information as to why vision is behind but wouldn’t necessarily change what we are doing to help him at this point.

His only other thought, different from three months ago, is that perhaps the pupil size is factoring into his ability to see.  His pupils are tiny.  If this is the case, it would likely be a someday surgery to enlarge the pupils to help him see better.

So – we keep doing what we are doing.  We practice with the light box and noisy toys and contrasting colors/images.  And we go back in July for more tests.