I said something on the way to St Louis about how I planned on just going with the flow and being a “chill mama” on this, our first family trip.

The reaction from the fam bam proved they all know me very well – and tolerate me anyway.

But today, as we realized Twisted Ranch, the restaurant the kidlings REALLY wanted to go to, was only open for lunch today and closed all day tomorrow … I had a tough choice to make. Our day was already full of plans, with only a small window for Kiran to nap. Lunch out was not a plan.

Knee-jerk reaction is always – Well, Kiran needs his nap, so I’ll just stay home. This is what I signed up for – I’m the mom.

But they all really, really wanted us to go along and have this experience, so we kept brainstorming. We figured we could do the brewery tour, have lunch, get back for Kiran to take a quick nap, and still make it to the arch tour in time.

Okay. I agreed. We headed to the tour. Only, we missed our window for the 11:00 tour, so we had to wait until noon. Suddenly, my choice got harder. Not only was there no time for a nap, but there was no time to go to the house for his snack.

It is always hard for me to deviate this far from Kiran’s schedule. We do well – BOTH he and I – with a schedule. But this is also vacation. With the whole family. And I have to remember that sometimes, it really is okay if everything isn’t perfect.

So we went to the ranch restaurant. All of us. I let the schedule go.

Kiran rallied. He was a rockstar. And what was really cool, is I ordered him a sprite with bubble gum syrup and gave him a little in his tube. And he got to sample several different flavors of ranch off a French fry and kept opening his mouth again and again.

He had a great experience!

And we might have missed it.

Today reminded me about balance. It reminded me about letting go, just a little, when it makes sense. One day is not going to make or break it all with Kiran.

He actually made it until almost bedtime without a nap. He did so well and was such a good sport all day long (as I knew he would be).

I am so glad I kept that “chill” concept in mind. I have to care for him and I have to be sure his needs are met, yes. Absolutely. But I also want to give him great experiences at appropriate times.

After all … What four year old doesn’t occasionally skip a nap and have sprite and ranch for snack on vacation?

I grieve this time of year.  Christmas is my favorite holiday.  I love everything about it: the traditions, the trees, the lights, the music, the events, the food, time with family… Everything.

I wish Kiran understood the magic of Christmas.  I wish he was sleeping with anticipation of Santa Claus’s visit and the gifts that come in the morning.  I wish I felt the need to get that ridiculous Elf on the Shelf, because it would bring more magic to the month of December for him.  I wish he liked visiting Santa.  I wish he liked cruising around, looking at Christmas lights.  I wish he would wake up at 4 am (I know – but I really do! Consider yourself lucky!) because he can’t contain his excitement for the magic that is Christmas morning.

I don’t know that he will ever understand what Christmas is about.  But I do know this: He can understand the feeling of Christmas.  He understood the new experience of feeling cookie dough while helping me roll just a few cookies (I am impatient, I admit it, we did 4 together because he’s 4).  He understood the music and lights and excitement that was the Christmas Eve church service tonight.  He understands family and hugs and sitting by the fire and being.  Man, this kid understands just BEING, more than any other human I know.  And he gives the best hugs to those he loves.

He doesn’t get The Night Before Christmas, but he’s excited any time Mama reads to him.  He doesn’t know why he’s buckled in the car to travel to great-grandma’s house, but he loves that others want to play with him and hang out (and he loves not having to take a nap!).  He won’t understand – and may not even notice – that we will all be wearing matching pajamas tomorrow morning…but he will notice that he’s surrounded by love.

I grieve.  I do.  I want and wish for so much more for him, this holiday season and every day.  But I also see the joy.  And it’s enough, sometimes.  It’s enough.

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.