I spent most of the morning crying.

Really, I’m still not done.  Sometimes, I think, everything just bubbles up until it has to spill out.  And sometimes, it doesn’t take much to release the waterworks.

I got a text from Kiran’s dad this morning, asking if we can set up a new system to make sure he is aware of special days at school.  Because today was pajama day, and Kiran was supposedly the only one not wearing pajamas.

Problem is, I had no idea it was pajama day.  Because I read the daily note that is sent home, I read the monthly school newsletter that is sent home, I read the all school emails that are sent out….I was the kid in school who read all the assigned reading, and I read everything now too.

So I spent the morning feeling guilty and wondering how in the world I had missed something like this.  I am not perfect.  I will be the first one to tell you.  BUT.  THIS stuff, I am good at.  I am organized.  I am a calendar expert.  If there was a special day noted, I would have immediately put it in the shared Kiran calendar his dad has access to.

Our lives are too busy to not be put together in this way.  And without my calendar (and notes), I wouldn’t survive.

But it was more than just the guilt.  It brought up so much of the other stuff.  Kiran couldn’t tell us that today was pajama day.  It just puts a giant spotlight on his limitations, and that is always a difficult pill to swallow.  And not only that, but now he had to be different – in another way – from his classmates, showing up handsomely dressed instead of in comfy pjs.

Of course, he doesn’t care.  Again, this is one of those things that is my problem, not his.  I take great comfort in that, but it doesn’t make my mama’s heart ache any less.

I just found out moments ago: It wasn’t my fault.  I didn’t miss something.  Today – coincidentally – Kiran was out of his daily note, so his information was sent home on the daily note his classmates receive.  I noticed there was some typed information on the note, which we never see on his daily note.  So it made me wonder.  And I decided to send his teacher an email to figure out how we missed the memo, to make sure it doesn’t happen again.

What I found out: an all-school email that was supposedly sent out yesterday, wasn’t.  Something must have happened in the system, and it wasn’t received by at least some parents.  And the PJ day announcement was something sent home on the daily note his classmates receive, and Kiran was, unfortunately, forgotten.

I’m relieved and not at all angry.  It is SO much easier for me to show grace to others in their humanness than it is for me to forgive myself for the same.

We have decided to switch Kiran to the classroom note everyone receives, so we don’t miss any other important announcements.

All because of pajamas.

I led a support group discussion on the topic of advocacy at the Help-A-Heart meeting earlier this month.  It has been on my mind a lot and has become a big part of my role as Kiran’s mom: to advocate for him.

This morning, we had a meeting before preschool with Kiran’s teacher, SLP, and AAC guy (Augmentative and Alternative Communication) to discuss classroom plan moving forward.  Since consistency is the main principle I choose to raise Kiran with, it remains very important we all are on as close to the same page as possible in how we approach learning this form of communication.

And the meeting went something like this – I share this because it is such a good example of how I process information and then advocate.

They expressed their thought process in how we should approach this.  Apparently, the words’ order on the pages is important.  The four words on the first page are the four most common vocabulary words in daily language.  They were strongly suggesting we focus on those four words – Like, Want, Not, and Go – and have them on a placemat in four quadrants for Kiran to touch.  They then said his mack button – the voice-communicator, when he pushes the button (which has the pic of the vocab word velcroed to it), it says the word, recorded in my voice – can be used more for interaction.  So, for instance, we can continue focusing on the word Turn while we read the book; he can push the button to participate in the reading process and let us know to turn the page.

I am taking it all in.  I ask a few questions.  Kiran’s dad asks a few questions.  He tries to bring up “More” being a word that has been used a lot, that Kiran is most familiar with.  I – still trying to process and think about how this is all going to work and how communication (especially with little kids) works in general – said something about how it doesn’t matter much if “More” or “Want” is used, because WE will understand what he is trying to say, regardless of the word being used, between the two.

But I am sitting there, processing it all.  I took in his point.  I listened to the experts in their respective fields.

I almost said nothing.  I almost just went along with it, no questions asked.  But it was nagging at me.  So, toward the very end of the meeting, I spoke up.

My question was this: Do we HAVE to focus on the first four words, especially given, for the last month, we have been focusing on these five words: Go, Stop, More, All Done, Turn.  And, agreeing with Kiran’s dad, More is a concept we have drilled in Kiran’s head for a long time.  If the research is there – and again, deferring to them as the experts in their areas – I wanted to ask that question.  Because we are the experts in Kiran.  And we know what concepts he may more easily understand.

And we want success.  Competency.  We want it to work with what KIRAN wants to communicate.

And I was heard.  And we essentially had a bit more discussion around it and decided to work on these four words on his placemat, in the four quadrants: Go, Stop, Like, and More.  And to work on Turn on his button, in an interactive setting.

I didn’t want to speak up.  Like I said, I almost didn’t.  I woke up not feeling well, I wasn’t really wanting to attend this meeting, my brain was a bit fuzzy, the whole damn thing just feels completely daunting and overwhelming even on a good day…. But I have learned to listen to my gut.  I have learned to process information more quickly in these settings.  I have learned to hear Kiran’s dad and process what he is trying to say.  I have learned to take all of it into account, play devil’s advocate with myself a bit, try to make sure I have issue (or don’t) with the recommendation…..and I have to speak up if I do.

I left that meeting feeling so incredibly blessed.  Kiran’s dad felt good about where I went with things and was appreciative I spoke up in the way I did.  His team members all seemed on board and okay with the compromise and focusing on the words that made most sense for Kiran.  His teacher continues to be absolutely fantastic, as she answered Kiran’s dad’s question, stating the other kids next year will learn the words this way as well, so Kiran and they can communicate in the classroom.  And they may even teach his most special friend in the classroom this year (but probably not the others, since the year is almost over).

I know advocating will not always be successful – or this easy – but today, I am thankful that I have learned to do it.  For Kiran.

 

It has been a great weekend.  Really outstanding.  Busy.  A time with family and friendamily…a time to reflect and remember the real Reason life is worth the living.

I posted on facebook – without apology – many, many pictures and a couple videos of our Easter fun.  I am not very good at taking photos, and it is a way I can catalogue and remember our time.  I want all the photos of us, of Kiran, at three and a half (which he is, today…..)

My brain, though.  I think perhaps due to exhaustion and the start of an illness (or allergies, I can’t tell and have never had them before), I am experiencing more anxiety replay than normal.

At the park yesterday, my aunt wanted to take Kiran down the slide.  And I have watched a video or read an article at some point about how little kids can end up breaking their legs if they go down slides on adults’ laps.  And that kind of stuff sticks with me.  Thankfully, I come by my anxiety honestly, and my mom was all over instructing my aunt to get his legs safe…I didn’t have to be the crazy mama.

But in order to carry Kiran up to my aunt, I walked up these crazy narrow stairs with a handrail on only one side – why I didn’t think to walk around and find the safer stairs, I don’t know.  I sometimes feel pressure to give Kiran experiences before I get my bearings in a situation, and it’s something I am actively working on – believing I can (and should) take the time to assess more carefully and not feel pressured from others.

Anyway, anxiety replay number one.  I keep thinking about carrying him up those stairs.  I keep thinking “What if I had dropped him?” or “What if I had slipped?”  My brain actively visualizes these instances, and my heart rate increases.

And then – Eric did take him down the slide.  I am starting to get better at trusting Eric and letting go a bit when it comes to Kiran (Believe me, this is hard for me with ANYONE).  He has shown me a million times he is thoughtful and has Kiran’s best interests at heart.  But I was nervous about this.  And halfway down, I saw Kiran’s foot catch – and I was immediately up in their faces, my heart in my throat.  I thought for sure Kiran was going to break his leg.

Eric had him.  He stopped when his foot caught, and he had him.  But man, my anxiety was through the roof when that happened.  And then, due to some PTSD from a former relationship (which I am realizing is actually legitimate), my anxiety was even higher, as I repeatedly apologized for reacting the way I had.

But again, I keep replaying it.

It was actually so bad when we got home yesterday, as I was driving Kiran and me home from Eric’s, that it was all I could do to get home and just hug Kiran.  It helped to physically hold him and tell my overactive anxious brain that he was okay.

I don’t experience this often, but I share it because it is a part of our journey as well.  Not only are there real forces of anxiety at work in our life – legitimate concerns that bring about the worst fears imaginable – but I am also just an overly anxious person.

I didn’t always imagine worst-case scenarios or replay horrible what-ifs over and over again…and it doesn’t happen often.  But it does happen, sometimes.

 

 

I am more than a week behind on updating about our latest Iowa City trip.  I am not as compelled as I once was to catalogue the medical appointment part of our journey – but I know I sometimes look back to remember.

Wednesday afternoon, Kiran saw his orthopedic surgeon, a routine follow-up for his rocker bottom foot.  Dr. M. continues to be happy with how his feet look, but we have to keep wearing the brace at night.  For the last three appointments, I have held out hope that this would change.  Kiran doesn’t care.  He doesn’t know any different.  He has worn that brace overnight every night since he was two months old, after the casts came off.  But for me – I just keep thinking how nice it will be to cut that from our bedtime routine.

I did finally ask the question that has been at the back of my head for some time now – it’s funny how sometimes you just know you’re not ready to hear the answer to a question, in case it’s your worst-fear answer.  I often tuck questions away for months at a time, until my brain and my heart are ready for worst case.  In this case, Dr. M. always asks about how his standing is, how his walking is … he has always said kids usually wear the brace until they are independently walking.  So I finally asked – if that never happens, what kind of timeline are we looking at?  Will he have to wear the brace forever?  Thankfully, the answer is no.  Kiran will likely have to wear the brace for another year and a half, until he is five years old.

A load off my mind.  We have a light at the end of the tunnel.

Thursday morning was feeding clinic.  Nothing monumental happened here, but it was another good appointment.  I have been initiating conversations about taking a break from feeding therapy, both with our local therapist and we discussed it with our team at this appointment.  It is such a difficult decision to make, and we won’t decide anything until our regular feeding therapist has a few weeks with him – she is back next week from maternity leave, and we want her to see where he’s at and have some good discussions around break versus no break in therapy.

It’s just that he has been in feeding therapy for over two years now, and though we have seen some good progress, I feel he has reached a plateau.  Or at least I felt that way after his last swallow study last month, before he started doing some bites of banana and avocado successfully over the last few weeks.  The problem is – we’ve been to the banana and avocado stage before, several times, and then had to inevitably back off from them.  Purees and meltable crunchies have been the deal, for a long time.  And in email communication with our feeding therapist, she agrees that Kiran may need to be here for awhile yet, until he makes some significant gross motor progress and gets stronger overall.

I feel like I am at a place, in all areas, where I just want to know where we are going.  I want to know if it is all worth it, the schedule.  Not only does he have preschool four mornings a week, but we go to Childserve two afternoons a week, for two therapies each visit.  And I am ALL for it, when I see progress.  But I was long ago told that there will be times of plateau, times that a break makes sense, times that he should rest in one area so he can focus more on another…..

The decisions just aren’t straightforward.  Because we also have to think about potentially losing our feeding therapist when we take a break and – even more so – losing our therapy spot, which works well for Kiran’s schedule.

It is never about me, though the schedule often exhausts.  I just want to make the right and best decision for Kiran, and it’s not always straightforward.  I rely on the upcoming conversations with the therapist who knows him well and knows the trajectory of his feeding over the last two years.

It is good we have good people in our corner.

It is a very surreal experience, creating a bucket list for your infant son.  I did just that, as he approached his complex open heart surgery, performed when he was only ten and a half months old.

I was so scared I was going to lose him.

I wanted to make sure he had certain experiences, just in case.

It’s hard to live inside the “just in case”.

I actually only remember two items on this list.  I am sure I blogged about them back in those days, as I grappled with what was to come for him.

I am thinking about this today, because later this afternoon, his dad and I will be taking him swimming in the very same hotel pool we crossed “Go swimming” off his bucket list in.

I am looking forward to it.  Swimming is an activity Kiran and his dad regularly do, every other Sunday morning.  I don’t currently have access to a swimming pool, so I am not able to do this with him at this time.  This summer will hopefully bring some swimming to our lives, but the truth is, I’ve never been much of a pool person.

But the activity is also bringing up these emotions, from years ago.

The other bucket list item I remember, that was SO important to me: Eat ice cream.  I got permission from his pediatrician to let him taste vanilla ice cream around 9 months of age.  He seemed to like it, best I could tell that he liked anything that he ate orally at that time.

I just wanted to be sure he experienced ice cream.  I *am* a big ice cream person, and it was something I CRAVED when he was growing inside me.

We have had so many experiences, so many firsts, so many adventures … I don’t take them for granted.  I am thankful for every single one.

And I can’t wait to take him swimming again.

As an introverted, mostly shy, quiet individual who likes to just listen or blend into the room, wallflower style … I suck at small talk.

This has always been true.  Do you want to get into a deep conversation about love and the universe and humanity and God and really dive in?  I’m all yours.  I can go to the depths.  But when our conversation is primarily about the weather, I’m kinda lost.

I get stuck.

This is even more true now, when so much of my life is wrapped in and around being Kiran’s caregiver.  If you want to talk about Kiran or congenital heart defects or hospitals or accessibility issues or tube feeding or anything else about Kiran or related to my life with him, I can talk your ear off.  For hours.  Passionately.  Some of it *might* even be interesting and/or educational.

But when I am standing next to you waiting for the bell to ring to pick Kiran up from preschool, and we have already talked about today’s weather and this week’s forecast … I struggle finding another topic.  I’m awkward.  I don’t know how to do it.  I don’t *want* to do it.

Acquaintanceship is hard.  I want to skip that part and just get to the meat of a solid friendship.  But you have to wade through the small talk first, and I just have no clue how to move past it.

 

I don’t think anyone grows up dreaming about having a special needs child.  Perhaps I am wrong.  I know I didn’t.  My dreams of becoming a mother were along more typical lines.  My life today as a mother looks nothing like my visions.

But I am sitting here, while Kiran naps, thinking about how I was prepared for this life.  In big ways and small ways, I feel like God had a hand in shaping me and placing me in ways I needed, in order to be the mom Kiran needs.

Losing my brother at 17, I am no stranger to living inside grief.  The grief you experience as a special needs mom is incredibly different to the grief you experience with the loss of a sibling.  However, I learned a lot about myself, about loss, about living with intense sadness and a hole in your heart.  It has served me well and prepared me to live with the losses that come on a seemingly daily basis, the intense sadness that can overwhelm, living this life as Kiran’s mom.

Being a nanny.  I chose this job that I loved, and I gained so much valuable experience with neurotypical children.  It made the typical baby stuff less intimidating for me, and I was able to focus all of my mental, emotional, and physical energy on the new stuff.  The medical stuff.  If I had had Kiran with no prior baby experience, I am not sure I would have come to the other side of that as intact as I was able to.

Making the decision to move back to West Des Moines from Seattle when we were just planning on trying to start a family (Turns out, we were already starting one and didn’t know it yet when that decision was made) was an important decision.  The support of my parents has been invaluable from day one.  And especially now, as my marriage fell apart and Kiran and I needed a safe place to land….I am thankful we are back with my parents.  I couldn’t have done this without them.

People being brought into my life at the right times over the past three and a half years.  The right person who shared his story of faith and losing it and coming back to it prompted me to start attending church again during a period when everything just felt dark.  I don’t think I could still be putting one foot in front of the other on this journey if I didn’t have the touchstone church offers.  The music still continues to inspire and bring me the life raft I need every day to stay afloat.

My mom deciding, years ago, to take a job at the Area Education Agency.  I may not have known to so quickly obtain early access services for Kiran, as a weeks-old medically fragile infant.  I would not have the inside scoop on everything available to help him through.  And now, as I start my college journey, I have ample opportunities to job shadow, many SLPs who are willing to offer guidance and advice, and perhaps even a foot in the door once I am able to work.

I am thankful.  I am thankful for the experiences I have had that have brought me to this point.  My adult life has not gone as expected – at all – in any area.  But it was preparing me for Kiran.  It was preparing me to be his mom, his teacher, his therapist, his advocate, his nurse, his biggest fan.

And as hard as this journey is – as dark as the days can be – as exhausted as I sometimes (often) feel – I know I am right where I am meant to be.  And I know I have the best people around me to support Kiran and me on this journey.

It’s a long road ahead – such a long, winding, confusing, exhausting road ahead – but we journey together.  And that togetherness is what makes the journey worth it.

Kiran had his first field trip – and first ride on a school bus – on Monday.  I got to chaperone, so I got to be with him while he had his new experiences.  It was the first time he’s ever been on a wheelchair lift to get into a vehicle, and the first time he has been transported in his wheelchair in a vehicle.

In true Kiran fashion, he was very stoic at first, but he decided he likes the bus.  He was looking out the window a lot, and smiling up at his mama a lot.

The field trip was to one of our favorite places: The WDM library!  We go frequently for story times, to check out books, or to play in the kids’ area.  The preschoolers got a special story time, complete with bubbles, and we got to tour the downstairs of the library, including the back room where we got to see the book sorting machine in action! (I didn’t even know this machine existed – even *I* learned something on the preschool field trip!)

It was a great trip.  Kiran and I were both worn out (Preschool teachers are saints, and he has some really excellent ones).

Today, we got to experience another first.  One I have been hoping for but was unsure would come: Kiran had his first playdate with a friend from school.  She has been a special friend to Kiran from the beginning and is definitely one of his favorites to play with at school.  We met her and her mom at the new children’s museum space.

I feel like I am learning so much with these firsts.  I am learning more about inclusion and what that looks like.  I am learning what friendship looks like for Kiran.  I am learning that sometimes my own assumptions or fears can get in the way.  I am learning to trust people’s intentions, and trust that others, too, can value Kiran, just as he is.

This friend certainly does.  I could cry thinking about how sweet she was with him today.  She did hand-over-hand with him with instruments, showing how to play each one and giving him a turn.  She performed puppet shows for him, which he absolutely loved.  She made “sandwiches” at one point, serving Kiran last with the sentiment “Save the best for last!”  She was just attentive and helpful and sweet, and she really values Kiran.

The friendship looks different – of course it does – but it’s still friendship.

Honestly, I didn’t know what it would look like or be like, for Kiran.  But I am learning too.  I am learning from his amazing teachers, his therapists, the volunteers and workers at Courage League, his classmates…

These are firsts for me, too.  And I’m paying close attention.

Dr. Seuss has always been very wise.  One of my favorite quotes from one of my favorite books of his (Oh, the Places You’ll Go!): “So be sure when you step, Step with care and great tact and remember that Life’s a Great Balancing Act.”

Balance means Kiran is sitting next to me in my bed right now, as I type this.  His hand is on my leg, and he is playing with his body, sitting back into the pile of pillows and pulling himself back upright to sitting.  He keeps putting his ear against the side, either because it’s cool and feels good or he likes to hear the clacking of the keys.  He has already tried to eat the laptop once.  He is watching me write.

Balance means fitting in self-care, even when it means I literally have to be accountable to another human being and have to put it in my calendar, as if it’s as important as all of the things on Kiran’s calendar (And it is.  I know.  It is, but I don’t treat it like it is.)

Balance means, after a day at preschool, a meeting with his school SLP right after, two therapies at Childserve this afternoon, and a very dedicated oral dinner practice time, we came downstairs to read.  Just to read.  I didn’t bring the button with “Turn” recorded on it.  I thought about it.  We “should” be working on it.  But balance means sometimes, we’ve worked enough on our goals for one day.  Balance means sometimes, I just want to snuggle up in bed and read some of my favorite books to my favorite human.

Next up: The Knowing Book by Rebecca Kai Dotlich.  This entire book is one of my favorites, but I will leave you with what may be my most favorite part: “Run often and fast, toward or away from something.  Trust yourself to know which.  And trust yourself to know when, by the chanting clocks that hang on walls of dreams.  This is called wise and this is called brave.”

Kiran is now lying down next to me, impatiently pulling at my sleeve.  As if he is saying – enough, mama, balance.

It’s time to read.