Perspective on a Monday

A couple short hours ago, I wanted to hide in a closet equipped with ice cream and wine.

I had neither ice cream nor wine, nor the time or freedom, so I kept on with my Monday.

Let me tell you about it.

Remember Sunday night anxiety?  Ever-present these days, and, come to find out, far worse when you’ve come off a week of Kiran illness and haven’t left the house much.  Life is always hard, but when you get to kinda hunker down at home and ignore some of the hard parts for a week….it becomes even more daunting to have to face it.

Still, the morning started off well.  I forced myself out of bed with my 6:30 alarm – Dad’s weekend with Kiran, so I dug right into schoolwork.  I was getting things done this morning…and then I looked at my phone at about 10:00 and realized I missed an appointment (for myself) at 9:30.

This never happens.  I mean never.  I am the calendar queen, and I pride myself on that.  I live and die by my calendar.  If it’s anything, it’s there.  I usually look at it every night and first thing every morning, so I don’t forget anything.

I’m off my game.  It’s gonna cost me more in cancellation fee (no-show fee) than the appt would have cost had I gone and actually received the beauty service.  Great.

As I’m going to pick Kiran up, I realize – again, now that I am scouring my calendar for anything I may have missed – I forgot to let his waiver case manager know about his IEP meeting.  It’s tomorrow morning.  I text her and email her quickly, as soon as I realize my mistake.  Why are these things happening to me today?  Thankfully, she actually thinks she will be able to make it.  And she’s not required to be there – it’s just nice to have everyone in that room.

I’m not ready for the IEP meeting.  I honestly haven’t given it a lot of thought or attention.  Things are mostly good – I have some communication desires to bring up, but other than that…. But I know I need to start putting more time and effort into these meetings and this document.  It’s preschool right now, and his entire team is so great…but I have to start thinking about kindergarten and beyond.  I need to start learning more and putting effort in, so I am not completely overwhelmed when we have to start “the fight” of his education and inclusion.  I know enough to know it will not be easy, so I have to stop taking the easy path now just because we are happy with his preschool situation.

My mom is taking Kiran to preschool in the morning, because his dad and I will both be at the IEP meeting.  This means the morning will be cut short, and I have to have everything ready for him and the car packed before I leave.  Thinking I am being proactive and intelligent, I give Kiran his bath tonight.  I clean off his wheelchair from the weekend gunk tonight.  Then I put his clean little body into his wheelchair to eat his dinner.

And he coughs so hard at dinner that he throws up.  All over his clean self and his clean wheelchair…and now his bathtub pillow/mat is in the washer because I was going to get everything clean from the illness last week so I simply wipe him off best I can with wipes and resolve myself to give him another bath in the morning after all.  And now the wheelchair has to be fully taken apart to be scrubbed because vomit has seeped into the cracks and stinks.

So much for planning ahead and wrapping things up tonight.

I came near tears several times today and to tears once or twice.  It was a Mondayish Monday, the worst I’ve had in a long time.  Everything felt – feels – overwhelming.

In the midst of all of it, I kept coming back to this thought: We are here, together.  Everyone is alive.  No one is in the hospital.  Kiran is coughing still, yes, but he’s not sick like he was last week.

You see, I know it can be worse.  I know this isn’t the worst day I’ve ever had.  I know most of this stuff, in the grand scheme of things, doesn’t matter as much as it feels like it does.

Doesn’t mean I won’t gripe about my day.  Doesn’t mean I won’t raise my voice when, in the midst of the chaos, Kiran grabs hold of a piece of hair and pulls hard.  Doesn’t mean I won’t cry.  Doesn’t mean I won’t hope to God tomorrow will be better.

It has to be better…right?

Sunday Night Anxiety: Poop Edition

I struggle with anxiety, at various times in various ways.  My baseline is quite a bit higher, with both stress and anxiety, than I would imagine the average person’s is.  I have considered many different things at many different stages in my life to calm this anxiety, but I really just live with it.

Sunday night anxiety always seems to be greater.

Kiran has had an off weekend.  He woke up Saturday morning without his usual cheerful, happy-go-lucky demeanor.  I was watching him all day for other symptoms or clues that something might be off.  The only other symptom he gave me was being a prolific pooper.  He napped well, we ran a few errands, no fever, handled his food for the most part (He did have some “urpiness”, but that, along with the plentiful poop, I figured was due to him not having gone number 2 for a couple days.  Both happen sometimes.)

Today, the prolific pooping did not subside.  It got worse.  I was changing his diaper constantly, trying to keep him dry, clean, and creamed up.  It was no use, as his poor little bum got so red and raw, the skin was cracking open and bleeding.

This is not the first time, but I am pretty sure it’s the worst it’s ever been.

And I just feel so useless in these situations.  I can’t fix it.  I do everything I can – literally change his diaper every hour or more frequently, wipe as little as possible to clean him, let him air dry, lather him up with cream … his flinching in pain makes me cry for him.

And I can’t know – for sure – what is causing it.  He never ran a true fever throughout the weekend, and, other than being a little less outwardly happy and a little more cuddly/clingy, he hasn’t had any other symptoms to clue me in to what is happening in his little body.  I never know the right thing to do – and especially since I control how much food/liquid and what kinds go into his body – that is always a guessing game as well.  He got banana puree for dinner, through his tube, a regular illness go-to.  Just in case.

But the Sunday anxiety.  I am not ready to balance caring for a sick child alongside staying on top of my school work.  I knew it was coming, but I was hoping we wouldn’t be here yet.  I don’t know the right answer about school versus no school tomorrow, though I am leaning toward keeping him home with me.  If his demeanor hasn’t changed and his bowels haven’t slowed, I am not comfortable sending him to school.  I think a part of me has already made the decision to keep him home no matter what, because I really don’t know what we are dealing with here (but am assuming some type of viral gunk, and I don’t want him to share that in the preschool classroom).

For whatever reason – and there are many I am sure – Sunday night anxiety is the worst.  Any other night of the week, dealing with this same stuff, I would be handling myself better.  But tonight, it all feels heavier and harder, and the tears flow at a much lower threshold.  And I feel like I can’t make the right decisions and I can’t handle any of it, and I will fail.  At all of it.  Mom.  Caregiver.  Student.  All of it.

And I can know that I will wake up tomorrow, and I will handle it.  Whatever it is.  And we will make it through yet another day, however we make it.  But somehow, knowing that doesn’t ease what I’m feeling right now.

Update

I will probably write far less now that I have added online classes for me and am striving to strike a balance in all areas of my life.  It is good for me to be forced into a different identity other than “Kiran’s mom” – good for me to learn to prioritize other things.  Kiran is still almost always my first priority, but I am learning to prioritize my learning, other loved ones, etc in this growing process I find myself in.

That being said, I wanted to update on a couple things I am excited about for Kiran this fall.  Last week, he started his third intensive in the universal exercise unit (we lovingly call it “the cage”) for physical therapy.  We have high hopes for some strength and balance and confidence in his abilities to get to standing, stand, and even improve his walking attempts.  He has been doing such a great job so far, and we are just into week two.

It makes for a busy fall.  Preschool just started, and we are still getting used to that…and now we go to Childserve three afternoons a week, for a total of five therapy sessions there.  There are days I feel like all we do is run around.  And it’s only just begun.

We have had some really productive meetings with both of Kiran’s speech-language pathologists lately, from Childserve and the AEA, to get everyone on the same page with next steps.  As we start discussing trialing devices, we have decided to borrow a large ipad with his four core words on it (still plugging away at “go” “stop” “like” and “more”), along with a flexible mount that can be attached to his wheelchair, in the interim.  It sounds like that will be brought to school next week, and we will be allowed to bring it home to practice as well.  Kiran seems far more motivated touching a device and getting that touch/vocal feedback than he was with them just on a placemat in front of him.  It also works better than the little mac button we were practicing on, since ours can only do one word at a time and needs to be re-recorded every time.

There is a lot of hope and excitement for these steps forward.  Physical therapy and speech therapy are our biggest focuses this year.  He still has occupational therapy at both school and Childserve and vision therapy at school, but we are currently on a break from feeding therapy.  We really want to see where his gross motor skills can get to this year, especially in regards to walking, and we REALLY want him to start being able to communicate with us using language on a device.

Our team is seeing good things too.  As for physical therapy, our Childserve therapist let us know she does see him walking.  Someday.  Maybe with a gait trainer or walker for added support for the duration.  But walking.  This means so much, and we see his skills getting him there.  Our speech therapists are both seeing gains in cause and effect understanding, and our AEA SLP did a preference assessment for him yesterday with telling results.  In the past, Kiran hasn’t necessarily shown a strong preference for any item over any other, but he is growing in his likes and dislikes too.  It is amazing to see these preferences come out and to watch his personality really develop.

I’m just along for the ride.  This is Kiran’s path, and he is in charge.  It’s a long road.  It has taken us literally years of therapies and practicing at home and working hard to get here.  And it may take years to get to the next really big step on the journey.  But we are moving forward, and for that, I am thankful.

Three Year Heartiversary

Three years ago today, at this moment in time, I was where no mother wants to be.  Powerless.  Anxious.  Waiting.  Waiting to see if your surgery would be deemed a success.  Waiting to see if you would be the same boy I had to hand over to the surgical team that morning.  Waiting to see if you would be returned to my arms.

I didn’t expect today to be so emotional.  Something about this year is different from the previous years.  Maybe because so much has happened in the last three years.  Maybe because you are a big boy now, a preschooler, and as each year passes, I am more and more thankful for the experiences you are having.

I am more and more thankful that you are still here.

We went to Dylan’s Dragon Walk this morning, to remember and honor the heart angels, the ones who are not still here with us.  But they are.  You see it in the ways their families carry them around in their hearts, keeping them here with us.  Alive in them.  The strength of these families astounds me, and I was honored to attend with you today.  We blew bubbles in their memory, you and I saying as many names as we could remember, because it is so good to say their names and remember these warriors taken from us.

During the bubble remembrance, the song “All of Me” by Matt Hammitt was playing.  I can’t listen to that song without crying anyway, and the intersection of everything: your heartiversary, remembering the heart angels, the bubbles, the strength, the heartache, the joy, and you, wrapping your arms around me in the middle of it all….It’s a wonder I didn’t melt into a puddle of tears.

“You’re gonna have all of me
‘Cause you’re worth every fallen tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me
Is where I’ll start”

I have given you all of me from the very beginning, and I will continue.  Day after day.  It’s a long road, my sweet boy.  We are three years post open heart surgery and almost four years into your life on earth, but your story – our story – is really just beginning.  We write it every day.

I had another song that has been resonating with me lately that I wanted to share today, three years after the longest, most difficult day of my life.  This one is for both of us:

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Fight On, Fighter by For King and Country

“I was there on the day that your world changed
You were scared, unprepared, for the heartbreak
Everything you knew faded out of view
Stole a piece of you
If I could, oh I would be a hero
Be the one who would take all the arrows
Save you from the pain, carry all the weight
But I know that you’re brave
Fight on, fighter
Don’t let anyone steal your fire
Fight on, fighter
The Spirit is alive inside ya
There’s a power that you hold, that you lock down
Let it breathe, give it wings, set it free now
Time to make your mark, break the prison bars
Show them who you are
Stronger than you ever thought
I know you’re stronger
Braver than you were before
You know you’re braver
Oh, no, you don’t have to be afraid
Together we’ll face it
So don’t ever stop, no matter what
‘Cause you’re gonna make it”
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We journey together, my sweet, brave, strong little man.  You’re my favorite human, and you’ve taught me more – changed me more – than any other.  I am so lucky to be your mama … and I’m glad you’re here.