A thing happened today that has never happened before.

For the first time since Kiran has come into my life, while I have been physically with him, I let go.

Usually, when I am with Kiran and someone else wants to get their hands on him, I am never able to fully let go of the responsibility.  I am hyper-aware of his location at all times.  I am aware of the hair-grabbing, the slobber running down his chin, the loud noises he makes.  I feel like I still need to be in charge.  I feel like I have to run interference.  I feel like I have to be responsible for every action.

Now that I think about it – I feel that I have to be sure the person holding him is okay.  Is comfortable with him.

I attend church pretty regularly with my people, and even during the service when Kiran is passed from lap to lap, I have never been able to fully let go.  I am always shushing him, aware of when he has someone’s hair in his slobbery hand, asking if they want me to take him.

He is my responsibility.  He is mine.  I am the mom.

Today, I was able to let go.  I handed Kiran off, and I was able to relax into my seat and engage with the sermon.  I was conscious of it happening.  I literally said to myself “It’s okay.  He has him.  Kiran does not have to be your responsibility every second.”

And I knew it was true.  Kiran was in the lap of someone who loves him, who I trust with his care (This statement is true of so few people.)

I let go.

I am proud of myself.  This was a huge step forward in the name of self-care for me.  I am taking other important steps forward lately – some important ones this week, even.  It has taken me over two and a half years, but I am realizing the importance of also caring for me in all of this.

I am learning to accept help – even ask for it – in ways I haven’t been able to until recently.  I am learning to acknowledge the guilt I feel for taking bits of time for me – but do it anyway.  I am learning that every moment doesn’t have to be scripted and therapy-approved and working toward some ultimate developmental goal – that it is okay to just giggle and read books and blow bubbles (without all the added “have-to’s” I always throw in from therapy).

I am learning, in small but important ways, to let go.

I have a feeling we are at the start of a very long, very frustrating journey to a (hopeful) diagnosis.

Test results for the screening for congenital disorders of glycosylation showed up on mychart yesterday.  The first word I saw, in red at the top, was Abnormal.  And guys – this is still so weird – I was THRILLED.  Joyous, even.  I was ready to throw a parade to celebrate.  We were on the right track with this test!  One step closer to a diagnosis…some answers…a path to follow!

And then I read more of the report.  The two red numbers, showing the abnormal results, were just barely out of normal range.  For instance, if the normal number should be equal to or greater than .50, his was a .48.  The notes at the bottom, from the person interpreting the test, said it is essentially a normal result and is not indicative of these disorders.

Of course, they then went on to say that sometimes, these numbers can normalize for a time.  If we are suspicious his symptoms still strongly point in this direction, we should test again in 6-10 weeks.

SIGH.

This is just the start.  I understand that.  How exciting if the very first pathway we suspected was the right one, though!?!  I guess it is not meant to be.

We should be getting a phone call from the genetic counselor soon to discuss these results.  My biggest questions are: Do they suspect strongly enough that they feel we should test again in a couple months?  What is our next best path to test, and how long do we have to wait to try something else?

Right now, I am sitting in a position where I no longer fear news.  I crave it.  I want information.  Diagnoses.  Anything I can get my hands on that will help me help Kiran.  I know full well the process of information/diagnosis, grieving and struggling, and pulling my crap together for another day.  There isn’t anything to fear anymore in that cycle.

My only fear – the one I try not to put much time or energy into – is that we will stumble upon a diagnosis with a short life expectancy.  I don’t see this happening.  I don’t know why – but I just don’t feel this will be Kiran’s story.  Not that I am in denial – his heart defect alone could cause fatal problems at any point down the line.  I just can’t live in that fear, so I won’t face it unless I have to.

Cross that bridge when you get there, and all that jazz.

The years are long and short.  I still can’t quite wrap my mind around how time is like that: rushing by, yet holding so many happenings.

Three years ago, I heard words I never thought I’d hear: There is something wrong with your baby’s heart.

Before those words, I naively thought I had been through the tough season of my life.  I honestly thought that I was somewhat invincible to life’s tragedies because I’d already lived through one.

Life is a brutal teacher.

Grief is an unrelenting force.

Love is a powerful phenomenon.

 

I am often surprised by my stoicism.  And yet, when I randomly have an emotional moment I cannot – literally, cannot, for the life of me – control, I am even more surprised.  This happened on Monday, when the genetic counselor called me to make sure they had all of Kiran’s updated info before our appointment with them on Tuesday.  She asked a simple question – what is your biggest concern right now? – Well.  Well.

I teared up immediately.  And began apologizing even faster.  It caught me completely off-guard, like the question “Do you have any siblings?” used to.  I forget, sometimes – living inside stoicism, hiding behind anger, muscling through the daily routine – that I also haven’t grieved this yet.

I shared with someone, in a rare moment of transparent honesty, that I feel like this new cycle of grief hasn’t been faced yet.  And when I get there, it will pull me under for awhile.  I don’t have the luxury of living inside the grief, but I know – I know, from previous experience – at a certain point, it bubbles up inside to a point it cannot be ignored.

This isn’t what I came here to write about.

We saw genetics on Tuesday afternoon.  This wasn’t so much an information-receiving appointment – more a next steps kind of appointment.  We did talk through the MRI again.  We heard the same things.  Kiran’s brain is small.  This is consistent with what we are seeing with his development.  He is progressing, it is great – at some point, we don’t know when, he will reach the top of his skill level.  But he is progressing.

He also has a small corpus callosum, apparently.  That was new information.  That is the part that connects the two brain hemispheres.  The genetic doctor told us there are some people who don’t even have a corpus callosum and have no noticeable symptoms – so this may be insignificant, the fact Kiran’s is small.

We are being referred to a neurologist.

They do have a plan for genetic testing.  My poor, sweet boy had to have blood taken – always, always a hard thing; one of the hardest for him, it seems.  They will first do a screening for Congenital Disorders of Glycosylation.

I am not a geneticist.  My very crude, basic understanding is this is an umbrella term covering several disorders involving proteins being sent to the wrong places in the body, causing multiple things to develop or function in abnormal ways.

I glanced through the informational packet on this.  Briefly skimmed some of the specific syndromes.  I don’t care to get too invested until I know this is what Kiran has.  I hold so much in my brain already.

We will have the results in two to three weeks, which is also known as lightning speed in the genetic world.  If the results are abnormal, we can do further testing to hopefully find a specific diagnosis within the disorders of glycosylation.  If it comes back normal, the genetic doctor had some other ideas of paths of testing to follow.

Why do this?  It’s simple.  If we can find a diagnosis – pinpoint an underlying cause for the many conditions Kiran lives with – we can have a prognosis.  We can have an idea of what his life might progress like – what kinds of services or equipment he may need – what we can do to help him live the best life he can live.  A diagnosis would help us plan and prepare – two of my most favorite words.  And it would help us understand.

Kiran is Kiran.  A diagnosis wouldn’t define him or limit him, but it could help me help him.  It could help me wrap my brain around the life he will have – the life we will build together and share.

We are taking steps in the right direction.  Always.  I can feel that truth.

 

My thoughts aren’t always pretty.  At times, I am made to feel badly about that.  By myself.  By others.  But every time that happens, I feel the need to stand up – for myself, for everyone else who has ever had an ugly thought.  A real, dark, nasty thought.

So this morning, you get my ugly.  Because if any of you have taught me anything, it is that you appreciate my transparency.

Here’s some pretty first: I appreciate all of the encouragements.  All of the attempts people make to reach out in love, to support.  And most of the time, I am in a place where I can take them in with grace.

Not today.  Today, I am angry.  Today, I am upset.  Today, I don’t want to be an inspiration or a mother you look up to.  I don’t want to.

You know what I want?

I want to be just another mom.  I want to have a normal life.  I want to run around and play tag at the park with my 2 1/2 year old son.  I want to ask him what he wants to eat for lunch.  I want him to throw temper tantrums.

I want to be just like you.  I don’t want to be someone you admire.

The truth is: This all SUCKS.  And right now, I just need permission – I am taking permission even if no one wants to give it to me – for it to suck.  I get to be angry.  I get to be upset.  I get to not always have to be gracious and positive and make everyone else feel better about my reality.

Don’t let this deter you from reaching out.  I need every word.  In an hour – a day – a week – I don’t know when, I will go back and reread the encouragements, and they will sink in.  They will get to my heart the way they were intended, and I will love you all for your words.

But today, I am just in the darkness.  Sometimes I have to sit here a minute.

 

I am looking at my notebook now, at the random notes I took while the doctor was talking.  I wanted to remember and understand.  Through all of this, I want to educate people about Kiran.  I know many reading this have read our entire story.  I know you are invested in this little boy.  I feel it.  I feel the prayers, I feel the love, I feel the tears even, sometimes.

She called it his cranial vault, not his cranial cavity.  I remembered that wrong.  My note says “Brain is all there – doesn’t as fully fill cranial vault as is normal for his age.”  Also – “Extremely variable – some make incredible progress – improve in development – will never completely have typical development.”

I know what we have going for us – everyone in Kiran’s friendamily and all of his medical/therapeutic team – is we will never give up on Kiran.  He has shown us his path, and we have simply walked alongside him, nudging him in the direction he is showing us.  We know that somewhere down the line, his path could change.  At this point, his enthusiasm and willingness to work hard on therapeutic tasks, along with the progress he is making – we know he has not reached his capacity.  We will forever help him reach his full potential.  Forever.

I already understand how we do that may have to change at certain times.  Our PT at Childserve, before we even had MRI results (only fears/suspicions of the results), gently told us that at some point, he may plateau.  He may tell us that he needs a break from the therapy.  He may need to rest.  Or he may simply…reach his potential.  I am already processing that and preparing myself for it, especially in light of the news we got.

Vision and pituitary gland.  I think we are supposed to throw a parade that his pituitary gland is normal and that his vision, though not 20/20, should actually be okay and continue to get better.  In light of all the other information, it is hard to strike up the band.  But I know pituitary gland absences or abnormalities can cause a lot of problems, and I know some of the other concerns our eye doc had could have potentially meant visual deterioration or loss.  So.  Perspective.  It is good news.  His nystagmus (shaky eyes, we see this far less than when he was brand new) and eye-crossing is a cerebellar issue (It is because the cerebellum is small).

The other thing she said, again focused on the hypoplastic (small) cerebellum, is that “Every movement is 10x harder – requires more concentration.”  The cerebellum is the part of the brain that controls balance and movement.  So many pieces of Kiran’s life and journey falling into place with this piece of information.

We have next steps.  I hope for more answers.  June 12th, we meet with Kiran’s geneticist.  She has a lot more information now, so hopefully she can point us in the right direction to find a diagnosis.  This type-A mama could sure use some more concrete answers and expectations.  I will say again – we will never limit Kiran; he will show us where he is going – but it would be nice to have a diagnosis to have an idea of where he might be headed.  Of what his life trajectory might be.

I do well when I can plan for things.

 

I don’t know how to write about this.  I didn’t think I would try, so soon, but it seems I am avoiding coming face-to-face with my feelings surrounding it, and writing has always been a way to feel.

I’m scared.

I am scared of the life Kiran will have.  I am scared I am not equipped to be his caregiver.  I am scared that all the therapies and all the prayers and all the hours of work and heart and sweat and tears will not pay off in the way I hoped they would.

We learned more on Thursday, when we were in Iowa City meeting with Kiran’s genetic ophthalmologist.

My fears – my motherly intuition – I am sad to say – were spot on.  I mentioned his brain scan was in line with his global developmental delays.  This is because his brain is small.  His cerebrum, his cerebellum, his brainstem – his entire brain – is smaller than it should be.  It is all there – thank goodness – but it doesn’t fill up his “cranial cavity” the way it should.  There are spaces and fluid where brain should be.

This is an anatomical fact.  We do not know, at this time, without further diagnoses, how this will translate into life function.  We do know he is globally delayed – we do know he is currently making progress in almost every area, slowly.  We don’t know how much progress he will make.  We were told he is not likely to ever have a normal development – he will not ever catch up with his peers.  Some level of permanent disability – permanent difference – permanent challenge – permanent….

His entire brain is small.  Everything is affected.  Global developmental delays.

We have an answer, yet we don’t really have an answer.  We know more, but we still know so little.

And I am scared.

Because so many of my fears I could brush aside and talk myself out of before knowing this.

What if he never walks?  Beyond that, what if he never masters any sort of independent mobility?

What if he never talks?  What if I never, ever get to hear my little boy say “Mama, I love you”?

Oh, there.  I found my feelings.

 

Oh.  Man.  Kiran is going to LOVE preschool!  We were able to visit this morning for about 45 minutes and be involved in some free play time, their morning greeting, and story time.  It was a fantastic experience.

There are four teachers (one head teacher and three assistants) with a class of about 16 students.  In this year’s class, there was another heart warrior we know, so it was really fun to see him!  Another little boy came right up to Kiran when we first went over to the rug to check out the toys and said hi with no prompting from any of the grown-ups.  This warmed my heart so much.

The head teacher and the assistant who interacted the most with Kiran (the one who has been there the longest – also the one the head teacher said she would put with Kiran initially since she is the most experienced) were both amazing.  Seeing the way they included Kiran and were able to accommodate him very easily in the routine helped put my mind at ease.

We also briefly met the occupational therapist, speech-language pathologist, principal, and school nurse.  These were more whirlwindy greetings, but I got a good feeling about everyone we came in contact with this morning.

One very meant-to-be type moment occurred during the morning greeting.  They have a cute little rhythmic thing they do with hand motions – I couldn’t remember if I tried – but then say hello to each person by name (kids and adults both).  And they do this in the different languages of all the diverse students in both classes (morning and afternoon).  Today just so happened to be hello in gujarati – Arif’s family’s language – apparently there is a child in the afternoon class whose family speaks this language as well.  The odds of this … let’s put it this way … before meeting Arif, I had never even heard of the language.  So the fact that our little neighborhood preschool in West Des Moines, Iowa happens to have a family who speaks it and today happened to be the day to use that greeting….

Yeah.  It was all around a good experience today.  Kiran loved watching all of the kids, interacting with the adults, trying to mouth the toys (They have a “yuck bucket” that I think Kiran will make sure is full every day with toys that have been in his mouth.), and listening to story time.

Now.  I did tear up at one point, and I am surprised I was able to actually hold the tears in my eyeballs – not one made it down my face.  This will not be the case when he actually starts preschool.  I can absolutely guarantee it.  But seeing how happy and excited he was (He told us ALL ABOUT IT all the way home!) and seeing how he didn’t even bother trying to find Arif or me when we were sitting behind him out of his line of vision….

He will love it.  And it seems, he will be well cared for.  I am still glad it is months away, but today was helpful.

As I sat down, preparing myself to write this entry, this song by Tenth Avenue North popped into my head:

“I’m tired. I’m worn. My heart is heavy. From the work it takes to keep on breathing.”

I had three hours today of stress and panic and confusion. I had three hours of breaking. Of craving control where there was none to be had.

Somebody screwed up. Somebody posted MRI results on Kiran’s discharge papers on mychart sometime this morning, before the doctor had called us – before the doctor had even seen the results herself. Arif saw them first and texted me.

And then I read terrifying words. Some that still terrify me. Some that no longer do. But when you read medical words that you understand but not fully … and you certainly don’t understand the true-to-life meaning of those words …. Let’s just say this: Someone screwed up big time, putting those results out there for us to read on our own, without doctoral guidance.

Kiran’s genetic ophthalmologist got back to us pretty quickly once she received my panicked email. She apologized all over the place and is going to be sure to find out how that happened.

The good news: Kiran’s pituitary gland is present and normal. This was the big thing we were looking for. Optic nerve hypoplasia (small or underdeveloped optic nerve), can often coincide with pituitary gland malformations or issues. Since we now know his is fully there and normal, we may even get to say goodbye to his endocrinologist, taking away one of many specialists we see regularly for him.

The other news: We still have more questions than we have answers. His brain is not normal. A lot of “atrophy” and “hypoplasia” was intermingled in the medical terminology. Again, this means parts of his brain are underdeveloped or small. We didn’t get a lot out of his genetic ophthalmologist, other than (and also confirmed when she talked to his geneticist), this information is in line with his known global developmental delays.

That’s really all I can say at this point, with any accuracy. Dr. Google and I had some good sessions this afternoon, but I had to stop when I got in too deep. I know more and can induce more, but until we get good information from our team, I am choosing not to share more.

Next step will be our appointment with Kiran’s geneticist. We have one already on the books for June 12th and that may be the soonest we can see her. She will take a look at everything we know, along with the genetic deletion we know he has, and see if we can finally piece together what is going on. If she feels the genetic piece can explain it all, we may finally have a syndrome diagnosis.

If not, Kiran will probably be referred onto a genetic pediatric neurologist.

It is hard living inside this space of knowing-but-not-really. It was incredibly hard learning new information the way we did this afternoon. I am so glad Dr D is going to get to the bottom of it and make sure no other parent will have to go through what Arif and I went through this afternoon.

I’m tired. I’m worn. My heart is heavy.