Eric and I attended the Michael W. Smith and Amy Grant Christmas concert last night.  I love Amy Grant.  I always have, but seeing her perform – she was gracious, she didn’t take herself seriously, she was real and fun – I was just so impressed with her as a human.  What a light she shone – her banter and conversation with the crowd blessed me as much as her songs did.

One song in particular of hers has always been a favorite of mine: Breath of Heaven, a song for Mary.  And in no way would I ever compare myself to Mary, or my challenges to what she faced in her culture at her age; but man, this song spoke to me in a way it never has before.

“Breath of heaven; HOLD ME TOGETHER; Be forever near me; Breath of heaven.

Breath of heaven; LIGHTEN MY DARKNESS; Pour over me your holiness; For youre holy.”

It is the prayer of my heart on an almost daily basis, especially lately, even if the prayer never actually reaches my lips or consciousness.  Hold me together.  Lighten my darkness.  Help me with this heavy load.  Let me rest, for I am weary.

This week is called Dead Week.  It is the week before finals.  I have a regular exam to take, a final project to edit/perfect, a group discussion summary to help write/edit, one final exam to take, and one to start studying like crazy for that I have to take Monday.

That isn’t even what is really exhausting me.  I have more important things that want my attention this week.  Parent-teacher conferences finally on Tuesday morning.  Regular therapies and life schedule for Kiran.  Help-a-Heart’s Christmas party Thursday night.  And apparently, in true optimistic fashion, I got Kiran and I tickets to see The Little Engine that Could (ha, fitting) at the Des Moines Playhouse on Friday afternoon.  My mom wants to start making Christmas goodies this weekend with me.  My attention is pulled to so many more important, more fun, more it’s-that-time-of-the-year things….and I just want classes to wrap up already!

I am still recovering from some viral junk, and my body just *feels* heavy this morning, physically.  My brain feels fuzzy.  My motivation is not where it should be.  My attitude is not pleasant surrounding school’s pull on my life and time this week.

Lighten my darkness.  That one sticks out above the rest for me this morning.

Please, Lord, lighten my darkness.

One of the classes I am taking this semester is Anatomy and Physiology of Speech and Hearing.  I have found it quite interesting – more than I thought I would, if I’m honest.  One particularly interesting unit – Articulation – discussed the four stages of swallowing. Yes. Swallowing is a four stage process, involving a TON of muscles and coordination and systems working just right….

Honestly, it’s a wonder any of us are successful at it.  And it’s no wonder Kiran struggles with it.  Very interesting.

Right now, we are in our last unit.  Advanced neurology.  We already had a basic neurology unit at the start of the semester.  And today, I read something that immediately brought me to a stage in the grieving process: anger.

Here it is:

“The cerebral cortex is important to humans, but people can live without major portions of it, especially if the damage is done early in life. Babies are sometimes born with half the cerebral cortex missing, yet they grow up with normal mental abilities.

Hydrocephalics can suffer compression of brain tissue. “One of these patients gained a first-class honors degree (Sheffield University) in mathematics and is socially completely normal. And yet…has virtually no brain” (Lewin, 1980, p.1232, quoted in Maratsos and Matheny, 1994).” (I should cite this source; I have honestly accessed so many sources throughout my studies today, I am not sure which one it is and don’t care enough to look for it.)

These very serious, very hefty problems with brain structures can occur in people…and they can have fairly normal intelligence and development.

And it’s not fair.

I’m not a neurologist.  But. I have learned enough to understand that the brain abnormalities Kiran has would make it very difficult for him to have “normal” (what a crappy word) mental abilities.

In fact, I understand it maybe more than I want to – except that’s not really true.  I have appreciated this course so much, because it has helped me understand some of the challenges I see daily.

But reading that today made me want to be a two year old throwing a tantrum.  It instantly brought tears to my eyes and anger to my being.

I don’t often get to this place.  It is a part of the grief cycle, though, and since I am continuously going through that cycle over and over and over again, as Kiran’s mom and caregiver…it’s bound to come up from time to time.

So allow me to say again: It’s not fair.

It’s not fair that he has an intellectual disability.  It’s not fair that new skills are so much harder for him to acquire than a neurotypical kid.  It’s not fair that he still hasn’t figured out how to stand on his own or mastered protective responses.  It’s not fair he can’t coordinate a safe swallow.  It’s not fair he can’t say “mama” or “I love you” or … anything.  It’s not fair that most of the time he doesn’t even care to make a choice about anything or have any volition in his own life.

He’s four.  And it’s not fair.  And I’m angry about it today.  I’m sad about it today.  I’m devastated about it today.

It’s not fair.

I learned at Kiran’s annual care meeting on Tuesday afternoon there is a new push throughout the healthcare industry to make the standard max for lifting a child, for transfer or mobility, without help from equipment, to 35 lbs.  Industry standard was 50 lbs.

And it is also fairly new that two person lifts are no longer deemed safe within the industry, so it means a mechanical assist will be needed.

35 lbs. means sometime in the next year, versus 50 lbs meaning a few years off.

I take this news in and I hold it for awhile.  Kinda push it down.  I don’t blurt it out until last night, when my parents, Eric, and I were discussing something else on the topic of long-term Kiran care.

Here is what just hit me: Eric always takes this stuff in stride.  Maybe it’s because he is being the strong, supportive type – at least maybe that’s part of it.  But what just occurred to me is this: He has always known what he signed up for.  He doesn’t have to grapple with any of the emotions I have had to grapple with all along: the dashed dreams, the grief of the child I always wanted, the diagnosis upon diagnosis when I thought he “just” had a heart issue.

I mean, he’s been along for the ride for most of Kiran’s life.  But he didn’t come into our relationship with any misconceptions about what he was getting into.  Kiran is Kiran is Kiran, and he knows it.

I can’t fathom choosing the life of caregiving – or even choosing the life of being a primary support for a person whose life is caregiving – but I’m glad he chooses us.

You know those moments in life when everything just feels too big?  Too hard?  Too much?

I feel like the last two months have been that moment, but I’ve been really feeling the effects of it all in the last week.

Kiran and I had his waiver assessment meeting on Monday afternoon, and one of the questions I was asked is “Do you ever feel overwhelmed with caretaking?” I kinda laughed and said ” I mean…”

Yes.

Yes, yes, yes, and another yes.  No one wants to admit that (except me, apparently), because no one wants anyone to think we can’t handle it.

It’s not that I can’t.  I’m handling it.  I’m over here killing it, if killing it means my son is alive, growing, progressing, and knowing he’s loved over here.  I got this.

But is it overwhelming?  Yes.

I learned something new last week about my brother’s accident, and it’s pushing down on me.  It shouldn’t matter, but I can’t shake it.  It feels too big.

I took a hard exam last night in my Anatomy and Physiology class, on the biggest unit we’ve had so far.  I am doing well in the class and I studied hard for the exam, but until I actually took it, I was paralyzed and feeling like I wouldn’t do well.  It felt too hard.

A kind man yesterday in the waiting room at Childserve spoke up, after I gave Kiran his water through his tube, telling me his daughter “had a feeding tube”.  We had a (always awkward, I suck at being a real person out in the world carrying on a conversation) brief conversation, and then I asked if she was able to get off the feeding tube or if she still had it.  “She died”

It is too much.

And I haven’t stopped thinking about this man.  Because yesterday, my capacity was such that all I could say was “I’m sorry.”  I meant it, but I know it’s not what I should have said.  I should have scooted over closer to him, and said “What was her name?  Tell me a little about her.”

Because I know.  I know what it means to have someone ask; I know what it means to be able to talk about our loved ones who are no longer with us.

I was reminded of something yesterday – even when a person knows what should be done in a situation, knows what the kind, compassionate thing to do is – doesn’t mean they have the capacity when the moment presents itself.

It helps me forgive others so much more easily.

Because oftentimes, life feels too big, too hard, like too much.  It’s just too damn much sometimes.

But I’m going to look for that man next Tuesday.  I am going to sit next to him and be completely awkward and say “Hi, didn’t we talk about feeding tubes last week?  I wanted to ask you….

What was your daughter’s name?”

Our big news of the day: NO MORE PIRATE TIME! Kiran’s left eye has gotten stronger with the eye patching we have done over the last few months, so we were told we don’t need to do it anymore! I was not expecting this – at all – I assumed we would be told to continue. This is a relief! Kiran hates pirate time.

Kiran was an absolute rockstar patient today. He did way better than ever before with all of the tests and examinations they did – he even took a new acuity test, put his chin on the chin rest for a few seconds for the first time ever, and didn’t cry or squirm (much) when they did the dilating drops.

It’s almost as if he turned four and just became even more patient and good for the docs (He has always been a pretty darn good patient, but eye appts are the worst).

Dr D feels he is doing very well. It was determined the “cataract” we have been watching in his right eye is really just a bit of pigment. It isn’t blocking his vision, and this means it’s unlikely to grow (like a cataract might), so this should not need to ever be touched surgically. Always relieving!

His left pupil is really small but dilated well with drops today. Since it seems he is able to see well with it, she opted to not do eye drops at home (We have done these in the past to help open up his pupils – he likes eyes drops about as much as he likes eye patching). So thankful to not add any meds to our daily life.

All in all, his vision seems to be improving. She feels his nystagmus – that we still see from time to time but has improved a lot during his life – is neurological and has to do with gaining motor control over his eyeballs. He is improving with this too – as we know, because we can see the improvement.

All in all, it was a very good appointment with very good news. We will be back in July and will work on practicing with the chin rest concept between now and then so Dr D can get a good look at the inside of his eye with a special camera that requires some chin rest time. It will be a couple years before we do the ERG test, which will also give us some valuable vision info, because he just isn’t developmentally ready for that yet.

Today really could not have gone better. So thankful for my awesome little man. And SO thankful we are done pirating.

18 years ago today, my life changed.

I feel like I don’t have anything new to say about my journey with grief.  When the years keep passing, the journey doesn’t necessarily change much.  I wouldn’t call grief a constant companion – days do pass that I don’t think about Aaron at all – but it is something that has altered me permanently.

And it still hits you out of nowhere sometimes.

And still, every year around this time – and on this day – my body knows, even when my brain isn’t consciously thinking about it.  I become more emotional, more anxious, just more.  And then it dawns on me why.  Every.  Year.

Last year was my favorite November 7th.  Last year, I had the freedom and ability to really spend the entire day remembering Aaron.  I needed it.  This year, today, we travel to Iowa City for an eye appointment for Kiran.

But, thanks to an old friend who I caught up with earlier this week, I have been reminded to be kind to myself today.  And I am deciding to do that.  School can wait for tomorrow.  I can find the pockets of time in the day to just enjoy Kiran and be with my family – Dad is making the trip with us.

Life has to keep moving, but today also has to be acknowledged.  It’s never a perfect process (well, last year was pretty perfect), but it’s important to me to take the time.

I do miss Aaron.  I have become an expert at missing him.  I have missed him for an entire year more than I got to not miss him.  I have had to live my entire adult life without my brother.  It still sucks, no matter how many years pass.

 

 

Today is Kiran’s last day in the cage (universal exercise unit).  This is the third session he has had in this intensive physical therapy program, and he has always made really great progress in strength and confidence within his skill set.

This time has been no different, despite his 8-week session turning into only a 6-week session, due to life.  His evaluation was done yesterday, and he gained 11 points during this session!  This essentially means his need for assistance has gone down, across various skills, by a total of 11 points (Most of the skills targeted went down 1 assist point).

This is cause for celebration!  Progress has been made!

It’s a long road – and lately, it has felt so hard – but we journey together.  And continue to move forward.

I was cleaning up my google docs today and came across this snippet of writing.  I am unsure if I have ever shared it before, since I went a different direction with the “Dear Me” letter I wrote for HAH.  It was important for me to read today, and I thought maybe others need to hear these truths.  We are all walking paths that require strength and the knowledge that we are enough.  Even in our brokenness, even with our many mistakes, even within our exhaustion … we are enough.  We are on this journey for a reason.  We are in this together.

***Dear Me,

Today, life as you know it ended.  It has happened to you before, and here you are again.  All you heard today, after a long ultrasound you endured alone, was “There is something wrong with your baby’s heart.”  You can’t even remember what they called the defect, because at that moment, you crumbled.

You didn’t feel you would ever be able to move forward.  The grief and fear that enveloped your heart, this diagnosis day, made it hard to believe you would even remember how to walk.  But you will. You will move one foot in front of the other. Some days, you will even skip.

It will be hard for you to fathom, right now, but there are two things you need to know.

#1) You. Are. Enough.

#2) You. Are. Strong.

In the months to come, you will feel alone in ways you have never experienced before.  You will wonder where you will find the next reserve of strength, but it will always be there when you need it.***

I just shared, in a facebook group I am in centered around kindness and giving, that I am thankful for hidden pockets of strength.  I have been surprised so many times in my life by the strength I always seem to find when I need it most.  Don’t get me wrong – sometimes it takes a few days or weeks or months to find it – but it comes eventually.  I have learned to trust the journey I’m on, even when it feels dark and weak and lonely and scary.  I know the strength is inside me, and I know that I am enough even as I wait for it.

At least today, I know.  So I wanted all of you to know too.  One more time:

You. Are. Enough.

You. Are. Strong.

You. Are. LOVED.

 

It has been a hard month.

I have thought about writing so many times, but it feels so difficult to claw my way out of the darkness and leave anything I might write with some glimmer of light.

But the light is there.  I can never deny its existence.

I am being pulled in so many different directions.  I do not get to just focus on being mom anymore, and I miss those days.  I also see the benefits – for myself AND (shocker) for Kiran – when I focus on other aspects of my own personhood.  I am mom and part owner of a catering business that is starting to slowly grow and student…and friend and singer and writer and listener and and and.  I am a whole person who happens to be Kiran’s mom.  And I feel like stepping outside of the one role and really embracing all the others…helps me know and understand and BE the mom he needs.

But it’s hard.

My baby turns four tomorrow.  And this life doesn’t look like I wanted it to.  For me.  For him.  For our family.  I haven’t talked much – intentionally – about the grieving process I continue to go through with his dad.  I haven’t talked much – intentionally – about the struggles we have navigating this new family situation.  It wears on me.  I still won’t be writing about it.  That has to stay private, and it eats away at me.

Along with that, tonight, I realized that it is still so hard for me to not tell everyone the story.  I wish people could understand what happened.  Who I am, who he is, why things are the way they are, why I grieve so many things about where we are now.

Since I saw the positive pregnancy test, my entire life has been about this boy of mine.  That hasn’t changed, and it won’t.  Though others may not always understand my decisions – and it pains me to not be able to give the entire story – rest assured, I am always – ALWAYS – doing what I feel is best for Kiran.  In every instance.  Even when it hurts me.  Even when it may hurt others.  His well-being is paramount in my decision-making, and I will forever be an advocate for him.  I will forever stretch myself and strengthen myself in order to grow to be the mom I need to be for him.

Growing pains.  They call them that for a reason.  Growth is painful.

Here’s the joy.  It’s always present.  Kiran is SO loved.  Tomorrow, we celebrate the day he came into the world and changed it for the better.  He will wake up with me, his dad will meet us at preschool drop-off, he will spend some time with me in the afternoon after school and his nap, and he will go spend the evening and have bedtime with his dad.

And it all hurts.  And it’s all beautiful.  And it’s important.  For him.  He is so loved.

We have packed a lot into his four years of life, and it has been a journey I never imagined.  In so many ways, this is not where I ever thought I would be in life.  But I can’t deny the change in me.  I can’t regret where he’s brought me – in my ability to love, in my faith, in my growth, in my strength, in my painful stretching…..

The sayings go around facebook all the time, about how you have to let go of the life you thought you’d have and start living the life you’re in.  The poignancy of that astounds me.  Today was a day I stood in church, at the end of a sermon about leaving the 99 for that one sheep who went astray…and tears streaming down my face, with my son’s arms around me, hugging me tight, I sang the song Reckless Love.

Because I am lost.  And yet, I am recklessly pursued.  And that is also a place I never thought I would be again, inside that understanding.

I am thankful for where I am, for the life I am living.

If this seems scattered and confusing, it’s because that is my life.  It’s our life.

It’s a long road ahead, but we journey together.

I truly, TRULY wouldn’t have it any other way.  I would never trade the hard and real and everyday of this life with Kiran for the fairytale ending with the white picket fence.

Because on our journey, we get to be who we are, messes and all.

And so much love.