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.

I was attempting to borrow trouble before it was our time.

I had nothing to worry about this year, as it pertained to Kiran’s IEP meeting.  He truly has a fantastic team in place, and they all really give me the feeling they have his best interests at heart.

It helps that the preschool environment is inclusive by nature.  It will get harder, but it doesn’t have to be harder now.

I felt heard, respected, and like part of the team.  I was pleased with members of the team that spoke up to ensure things were being addressed clearly and documented properly.  All of my concerns and suggestions were readily accepted and will be put in the document.

I still need to educate myself more on this process and this document and what it will look like moving forward.  I need to educate myself more on what inclusion could look like for Kiran, and I need to prepare myself to respectfully advocate for it.

I didn’t put a lot of thought or effort into this IEP meeting – It was a last minute list I threw together.  It can’t continue that way.  He deserves more.  And it will get harder.  And he will need an advocate.

And that’s my job.

But for now, here’s to another great year with a great team – looking forward to some awesome progress this year!

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?

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.

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 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:

——————————————————————————

Fight On, Fighter by For King and Country

Kiran and I were able to cross two things off our summer bucket list on Friday night: We went to Kiran’s first ever Iowa Cubs baseball game, and we saw fireworks together after the game.

A lot was learned.  First of all, next time, we will make sure we arrive two plus hours before the start of the game.  It was a bit hectic finding parking, no accessible spots (or any spots) were close by the time we got down there, and we ended up trekking a bit with the wheelchair.  Thankfully, it’s doable, and we made it.

Couple other big takeaways: We will never sit in accessible seating in Section U again.  I actually wish the ticketing agent would have been more helpful when I called to purchase the tickets – it would have been helpful to know this is right by the dugout so kids would literally be swarming our seats at the end of each inning, trying to get players to throw them the game balls … Not super fun to have to be vigilant and make sure these ball-hungry kids treated the wheelchair and Kiran’s space with respect – and most of the game I was watching for foul balls flying, so I didn’t really appreciate the encouragement to have balls thrown in our direction either!

For the most part, it was a minor inconvenience, but it really started to wear on us around the seventh inning.

And finally, after checking two different women’s restrooms and resorting to changing Kiran on his changing mat on the gross bathroom floor, I saw the sign that stated diaper changing areas are at first aid, located behind home base.  Important info, for next time.

It was actually, truth be told, a fairly stressful outing for this mama, especially on a Friday night after a long week.  But man, when I saw his excited face once the fireworks display began, it was all worth it.  His dad always gets to spend fourth of July with Kiran, so I try to make a point to see fireworks with him another day.  I had all but given up on making this happen – and had kinda given up on an Iowa Cubs game this summer too – but I am glad we went.

It matters, which is why we do it.  Even when it’s stressful and it doesn’t go as planned and you have unforeseen frustrations and knowledge acquired too late.

But next year, when we take Kiran to another game, we know the drill.  So thankful to be able to give him these great experiences.

I have been in denial about the upcoming preschool year.  In denial, telling myself I wouldn’t be worried or stressed at all, because Kiran would be in the same classroom with the same teacher and some of the same associates, and I know it’s a great environment for him.  He is well loved, there, and they know him.  They know how to feed him via g-tube, they know how to read his body cues, and they know what an absolute joy and asset he is to their learning environment.

But.

The families are new.  The kids, new.  So while some of my fears and concerns are absolutely gone from last year’s school year, I still have plenty.

I would imagine (Kiran is my only, so I can only assume here) ALL parents hope similar things for their kids as the school year starts: They hope they learn and grow academically, yes.  I would assume they also hope they will be kind and make friends and feel like they belong in this world.

And that’s the part that’s harder.  Because I have those same hopes for a special little boy that this world is not made for.  Inclusion and celebrating diversity are becoming more of a “thing” in popular culture lately, as you see kids with varying abilities in inspiring commercials and as models – and as big stores are now carrying clothes and other products catered to a diverse group of kids.  And I love it.  I do.  It’s inspiring and people tear up and it’s oh so feel-good….

But it really isn’t translating to much of the real world, just yet.  The social bubble people put around us is real – it’s not just us; I’ve checked with other special needs families.  When people are uncomfortable or they don’t know what to say, they simply pretend we aren’t there.

I’m doing my best to break the bubble.  Fair or not, I know it falls on me.  I’m about the worst person it could fall on, too, because I am about as introverted and socially awkward as they come.  It takes a lot for me to walk up to a stranger and start a conversation, and small talk is excruciating for me.  But I know it starts with me.

And I know preschool is a great place to hone these skills, because it only gets harder from here.  As the gap of what Kiran can do and what his peers can do gets wider as he grows (I am not being pessimistic here – I know Kiran will continue to make progress, but I also have to be realistic that this gap will grow as time goes on), it will be harder and harder for him to make friends.  As much as I hate that, because I know he brings so much to the table.  It shouldn’t – but it will – take special kids who choose to befriend him and understand him and who will see his joy and spirit.

I can work myself into a panic with this.  I really can.  It was my biggest worry going into the school year last year, too, but Kiran was very well liked in the classroom.  Peers loved playing with him, and he made a long-lasting special, true friend.  I know it’s in the cards this year, too.  But it’s hard, starting out.

And ultimately, I know Kiran will never have a shortage of people who love him.  It may not be the peer friendships I long for him to have, but the love will be there.

————————————————————————————————————————————-

Oh, buddy.  Back to school night last night made me realize I am really not ready for this again.  My mama heart longs to protect you and shield you from the hurt … and yet, at this point, I carry it all for you.  So maybe I’m trying to protect my heart.  I knew what I was getting into, with this, when I chose to be a mom.  My heart is going to break – over and over and over and over again – but it is all worth it.  Being your mom.  Man, I am lucky.  I promise to keep pushing against the bubble, even when it’s really hard.  I pray you know how much you are loved as you go into this new year.  You’ve got this, Kiran.