Unilateral Redness

Kiran likes to keep us on our toes.  Always.  Can’t get too comfortable over here.

Over the course of the last few weeks, he has developed a new symptom for us to wonder about: On the right side of his body, noticed after physical activity or overheating, he is getting periods of redness on his cheek, ear, arm, and hand.  Not always all of those areas but always on the right side.  The spots are warm to the touch, blanch normally, and eventually return to his usual beautiful skin color.

Since due diligence is always the name of this mama’s game, I have kept on top of it.  It was first noticed at school after physical therapy, about a week and a half ago.  I got a phone call from the nurse, we discussed it, and we chatted about it a little more in person the following morning.  She was baffled – as was I – but after I noticed more of it that same first afternoon and had another incident over the weekend with the same symptom, I called and chatted with his pediatrician Monday.

She didn’t seem overly concerned since it doesn’t seem to be bothering him and no other symptoms are present.  Her hypothesis – a good one – was that perhaps his heart physiology made it so more blood flow went to those areas on that side.

Except it just started happening – but he *is* getting more active.

Then later in the week last week, I noticed it again – and school noticed it the following day.  Time to email Kiran’s cardiologist to see if our working hypothesis holds any weight.

It doesn’t.  He is concerned enough that he feels we should follow up with a neurologist and maybe move forward with an MRI of head and chest to make sure everything is okay.  There are some syndromes that can cause this uneven, one-sided flushing, due to nervous system damage.  And some of the things that cause that damage are quite worrisome – like masses, tumors.

I am not getting ahead of myself, but I am continuing to do my due diligence.  Dr R is putting in a request for a neurological consult appt with the neurologist Kiran saw after his first MRI in 2018.  He said he would request we be seen in the next four weeks but can’t guarantee that.

And then we go from there.  Because this journey just keeps pushing us into unexpected territory, and there is no way to plan for what life might throw at us.  I hope it turns out to be nothing – just the way Kiran’s body is working right now.  But if it’s something, it’s important for us to know.  So.  It’s a long road ahead, but we journey together.

Nobody Leaves Their Heart in St. Louis

I keep thinking about our recent (and first) family vacay to St. Louis.  It had all the components a family vacay should have.  It was the first time we had all – Eric’s girls, my boy – gone away for a weekend together…even throwing a couple boyfriends into the mix.

I have reflected a lot on the time, because my thought of what a vacation is has changed drastically with Kiran.  A vacation is not relaxing for me.  A vacation involves doing everything I do for Kiran’s care at home…but harder, because we aren’t home.  It involves navigating inaccessible spaces and packing lunch bags full of syringes and trying to think about everything I could possibly need if we are out and about all day.  It’s imperfect and messy and stressful…and when I get home from said vacation, I desperately need a vacation….

But it’s so worth it.  Because we are out, living.

This particular trip reaffirmed that I need to stop feeling paralyzed about figuring out certain aspects of Kiran’s care.  He’s getting bigger.  Accessibility is a thing I need to concern myself with.  Being able to travel and change his diaper (I’m going to buy a portable cot!) and have him sleep safely (air mattress with raised sides already purchased; pop up tent that fits on a mattress will be next step in a year or two)… all important things.

My number one priority is making sure Kiran does not experience life from a bubble.  He is not going to sit on the sidelines.  It takes some planning and some equipment, a lot of energy and some back-strengthening exercises …

But it’s worth it.  He gets to be miserable with the rest of his family up in the hot, sticky arch in St. Louis, being herded around like cattle.  He gets to be the one family member not disappointed in the new aquarium, because he really digs the electronic fish production happening on the ceiling of the lobby.  He gets to skip naps and watch way too much football and lick ranch in every flavor off a french fry.

We are living.  We are a family.  It’s not easy, and I am so often exhausted and sore and overwhelmed.  But I am grateful.  And I would do it all over again, even crammed in the minivan with imperfect sleeping arrangements for Kiran and the prep it took every morning when I would have rather been sleeping in or enjoying sitting around.  I’d take the syringe malfunction in the restaurant that was the last straw of a stressful, disappointing day…I’d take the tears in the bathroom when I excused myself to “change Kiran’s diaper”…I’d do it all again.  Because it’s real.  It’s life.  We are living it.

I am so lucky to be living it with this amazing little boy.  May I never forget.

 

2020

This year is starting with illness.  The holidays and our St. Louis trip really wore me down, and Kiran can only sneeze and cough in my face so many times before I’m bound to catch his cold.  I continue to be amazed at how much of a trooper he is, given how he must have been feeling during our trip.  That boy is tough as nails.

My facebook post regarding the new year included the following: May 2020 bring enough joy to balance the sorrow, enough peace to balance the chaos, and enough experience to facilitate growth.

I’ve experienced many years at this point, so I think that’s a pretty safe wish to bestow upon others.  Because the year will bring sorrow and it will bring chaos – and, like it or not, it will bring experience.  How we choose to face these things matters.  I am learning that more and more.

2020 comes with a lot on my plate.  I feel like we are at the cusp of so many things with Kiran – there is so much to figure out at this point.  Accessibility for him is going to be a big focus of mine this year.  He is growing and changing and requiring the same level of care.  In order to keep giving him the experiences in life I want for him, I have to adapt.  I have to take care of my own body – my back, especially – so I can continue to lift him (and his wheelchair), because it’s getting harder.  He needs an accessible home.  I need to start looking to the future for other equipment we may need in the home, because all of those things take time.  Insurance takes time.  And he’s growing and growing.

It’s daunting.  I find myself paralyzed with so much of it.  So my focus, at the start of this year, is to just take it one step at a time.  But to keep stepping.

You can’t get anywhere if you aren’t taking steps.  And the road is long.  And it matters.

Chill Mama

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?

The Weeping and the Joy

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.

Lighten my Darkness

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.

It’s Not Circus Either

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.

He Chooses Us

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.

Too Big

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?”