Big Boy

My boy is getting big.  It hit me the other day, when I took a picture of him sitting in Papa’s chair.  He looked like a big boy.  No longer a baby, with the chubby cheeks and the chubby little legs.  He’s longer and leaner, and his face is not my baby boy’s face anymore.  He has a big boy face!

Nothing really prepares you for that realization.  This isn’t the first time I have had it, because he’s been my baby-turned-big-boy for awhile now.  But man, it is hitting me lately.  I will have a four year old in October.

What does this mean?

He is still here.  This is the most obvious one.  In some ways, the biggest.  No guarantees exist for anyone, when it comes to the number of days we have on this earth.  With everything he has been through, Kiran has shown his determination to live a long life, here with me.

We have come a long way.  My boy, who I was so scared for, has made it so far.  So far.  In some ways, given the gravity of the diagnoses he has received along the way, further than I anticipated.  In other ways, we are not as far on the path as I had thought or hoped.  But no one can look at Kiran’s life and argue with the fact he has come a LONG way.

He is getting bigger.  Physically bigger.  Heavier.  Harder to hold gracefully in my lap and harder to carry for any length of time.  It means gone are the days of running into the store for a quick minute and leaving his wheelchair in the car.  It means I have to start thinking ahead, on a lot of everyday logistics, because he is as light now as he will be ever again.  He will keep growing, and mobility challenges will grow with him.

It means I simultaneously want to slow time down and rejoice in the fact he has made it to this point.  He is 3 3/4 years old.  There have been times I didn’t know if I would ever be able to say that – and I am thankful.  More than words could say.  Just thankful, to the very depths of me, that he is here.

But the grief comes, as it does for any parent of any child, when the child surpasses the baby and grows to the big.  For me, this grief – this goodbye to the baby stage – comes knowing he will be my only, which wasn’t always my plan.

But then, so much of this life has nothing to do with what I had planned.

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Tired

This is a quote I see often: “You often feel tired, not because you’ve done too much, but because you’ve done too little of what sparks a light in you.” (Alexander Den Heijer)

I understand how this quote pertains to people – probably many people I don’t even realize – in my life. But it doesn’t pertain to me.

Every day, I am lucky enough to be ultimately doing what sparks my light. Caring for my son is the greatest joy and best job I have ever held.

But I am tired.

To the bone.

Almost all the time.

It is because the work is hard. And never-ending. Often akin to caring for a newborn, because at 3 3/4 years old (yeah, in 3 months, I will have a 4 year old!) and 33 lbs (give or take), I am still his main source of mobility.  I am still deciphering what he is trying to communicate to me at all times.  These stages end years ago for neurotypical kids, but there is no end in sight for us.

It’s because the worrying is hard.  My brain is activated constantly, thinking about medical concerns and developmental concerns, but mostly about whether this trick or that therapy might finally be the thing that brings great progress.

It’s because the guilt is hard.  Our to-do list every day is longer than we could possibly ever accomplish in a 24 hour period.  We do our best.  There is never enough time to practice all the skills we should be practicing.  There is never enough time to enjoy all the life we have to be living.  I feel guilty when the balance swings one way or the other.

My light is sparked.  It’s lit.  It’s shining brightly and brilliantly.  I can honestly say I feel incredibly lucky, and there is nothing else I would rather fill my days with than being Kiran’s mom and primary caregiver.

But it’s hard.  And I’m tired.

To the bone.

Almost all the time.

 

Summer Bucket List

Time flies.  Tomorrow is July.  My summer class has been somewhat easing me into the schedule, but looking ahead, July really ramps up.  It is going to FLY by.

It is easy to get caught up in the to do lists.  So I made a different list for summer.  I made a summer bucket list for Kiran and me.  And today, we crossed something off of it!

Eric and I took Kiran to his first movie in a movie theater.  We saw Toy Story 4.  In hindsight, it wasn’t the best movie choice to keep Kiran’s attention – he would have preferred brighter colors and music to hold his attention better – but he seemed to enjoy it nonetheless.

Our biggest mistake was getting there early, which is notoriously my fault.  Being the first time, I wanted to get there, see how it was all going to work, and get settled well before the movie started.  But having Kiran sit through a half hour of stuff before the movie meant he was kinda over it about twenty minutes into the movie.

That being said, he did great.  He sat in his wheelchair next to me to about that 20 minute mark, squirmed around on my lap for awhile, and ultimately settled in comfortably on Eric’s lap for the remainder of the movie.  He really did a great job – we made it through the entire movie without leaving!

We may not cross everything off our list this summer.  I know this.  It’s likely we won’t.  But it is good to have, because it keeps me focused on the things that are most important: making summer memories with my sweet boy.

Stepping Back to Breathe

I feel like the conversation we just had with Kiran’s private speech therapist today mirrors the decisions I have had to make this week: Take a step back.  Breathe.  Ease into the goals you have set for yourself.

I have learned a lot about and am fairly good at advocating for Kiran, but evenso, I still have a tendency to listen to the experts and get pulled along a certain trajectory.  This is mostly a good thing – I know I am not the expert at everything, and I am certainly not the smartest person in the room when it comes to certain things.  There is a reason we go to medical doctors and professional therapists, after all.

Also, hindsight is 20/20.

In addition to all of this, I am learning firsthand about the problem of having too many cooks in the kitchen.  I am also, as always, dealing with the stress of being the head chef.

You know how sometimes you just want to stomp up and down and scream “I don’t wanna!”  Just me?

Anyway.  We went down a path with Kiran for speech – actually, though the therapy is called speech therapy, I have learned what we are really working on is language right now with his goals – and I think it was far too complex a path for Kiran.

We assumed competency, and we gave it a go.  I had a gut feeling we were skipping too many stepping stones, and I think his local speech therapists felt the same way.  But also, everyone had an opinion which put us on what I believe might be a different path than the CDD speech therapist intended.

All of this to say, next week, when we follow up in Iowa City, we will be having a very frank conversation about where to go from here.  How to most effectively take some steps back and some of the things we feel (and our local speech therapist feels) will help Kiran start to master these vocabulary words and develop language.

The bright spot?  The speech therapist today did say she feels Kiran will eventually be able to master some of these vocabulary words and start communicating with us using language, at some level.

I feel he will get there, too.  We just bit off more than we could chew, at this point.  Live and learn.  It’s a long road ahead …. you know the rest.

What To Do?

What do you do when it all just seems too much?

When your son is scared and frustrated during his teeth cleaning at the dentist, and your heart just breaks as you help hold him still?

When you go to the grocery store and today (maybe it’s your mood, I’m not pointing fingers), it seems everyone just stares and moves away?

When he’s uncomfortable and backed up after his weekend away, and you are trying every trick in the book, but the poop won’t come (and you are so tired of poop being such a huge part of your life)?

When you have your last weekly feeding therapy session, and you feel like a failure while also feeling relief while also wondering what the future holds for him?

But most importantly, when another heart warrior in your family (though you have never met him but have interacted online and even sent him a Halloween card because it’s his favorite holiday and was most likely his last)…is declared brain dead, and his family has to say goodbye?

The panic rises, because he has the same diagnosis – the exact same – TOF with PA and MAPCAs – as Kiran, so you wonder how much time you really have left.  This little warrior has put up a good fight, and he is only 5 or 6 years old.  And now his family is heartbroken, and you are heartbroken right along with them…..

And you wonder if God is listening – and you certainly don’t appreciate His answers if He is….

Today, what I do?  I eat a giant pile of bbq chips.  I write.  I snuggle Kiran, and we read books.  And I cry and cry.

Summertime….

I tend to write when I have less-than-positive experiences or am struggling, because writing is my therapy – my way of letting go.  I want to write about some good today.

A couple weeks ago, Kiran had a great experience playing with the next door neighbor.  He’s a rambunctious two year old who is constantly on the move.  They have watched each other before but never really interacted beyond saying hi.  He was so cool and patient with Kiran – he threw “helicopter pod” after helicopter pod up in the air for Kiran to see.  He would kick his soccer ball to Kiran and wait patiently for Kiran to kick it back to him, with mama’s help.  He just seemed to be happy to have a friend to play with, and it was a heart-warming experience.  Of course, I just learned they are moving in July, but this post is about the positives….

We had a great weekend, with Dreamnight at the Zoo (a night for special needs families) on Saturday night, church on Sunday morning, good naps both days (I even took one Saturday!), and good time with Eric and Nana and Papa.  Nana and I even got to sneak away and enjoy a beverage with some great HAH ladies (and friends of HAH) yesterday!

Through chance, I got to meet the two moms I hadn’t met yet from a chat group my good friend added me to a few months ago, of special needs moms.  I am so thankful for this group of women who are all walking ahead of me, as all their special needs kids are older than Kiran.  I am learning so much from the trials they have faced and the solutions they have found.  And it’s just nice to feel seen and known and understood by people.  Looking forward to a future summer get-together with all of them and their families!

And today, though Kiran had to just come along with me for a couple errands this morning, we stopped at the library afterward – our plan was to walk around the pond and maybe stop and read a book or two along the way.  Then we discovered the book on the trail – posted signs that include a book to read as you walk!  I kinda knew they did this, but Kiran and I have never really explored it before.  Today, it was the perfect way to practice some of his speech goals (His wheelchair tray currently has a bright yellow mat velcroed to it with four vocab words/photos we are working on; two of which are “Stop” and “Go”).  We had a great time with this and ran into a couple other families on the way, all of whom interacted directly with Kiran.  Definitely a make-your-heart-happy kind of experience.

And though I feel like I am being pulled twenty different directions already, just preparing for school while balancing my catering company and my parenting duties and my social life and my health/well-being and and and….I feel like today was a pretty darn good, balanced day.  And Kiran is taking another good nap, which allowed me to have time to write about it.

It might be a hard one, but it’s also going to be a great summer!

Struggle Bus

2019 has not been the year I had hoped it would be, and we are almost halfway through already.  Illness and challenges and now, the anxiety of starting online college courses, have worn me down.

I am finding it challenging to turn my brain off at night recently, and I am up far too late, given my 6 am wake-up call every morning.  I am finding it challenging to get out of bed in the morning, because I am overwhelmed immediately with everything Kiran needs first thing.

And yet, he is the reason I get out of bed every morning.

It is not going to be an easy summer.  I know that already, and we are only one week in.  I am determined to get out and find our place in the world, but it is challenging.  We spent a good part of our morning at the inclusive park, and it took a lot out of me.  I was completely ignored by all the other moms/caregivers there, and Kiran got one single hello from a mom.  Two kids (siblings) did come over and ride on the merry-go-round with him and asked some questions and talked to us.  Other kids just stared, and I would say hello or ask if they wanted a turn on whatever it was we were doing.

I have gotten better at that – responding to the stares from the kids – but it is still hard for me that the adults all ignore us.  Or they call their kids away from us when they are attempting interaction.

I spend my days with my sweet, charming, non-verbal son…and it gets lonely.  And these experiences make it that much more isolating.  But I am going to grow.

Kiran and I – just the two of us – went down to the music at Valley Junction last night.  I pushed his chair while carrying my chair, and we made our way through the crowd okay.  We were ignored there too.  Not a single person interacted with us, even when Kiran got into the music and clapped and made his adorable (biased, maybe, but still) excited sounds.

I have spent most of my life feeling pretty invisible – and even finding comfort next to the wall – but this is a different kind of invisibility.  Because we are SO visible.  With his chair, with his noises, with his constant seeking of attention (because PEOPLE are his greatest motivator; he is the most social kid!)… We are so visible, I don’t understand how we still aren’t SEEN.

I feel another painful growth spurt coming on, this summer, for me.  So my butt will keep getting out of bed in the morning, and I will keep going.  Kiran deserves a great summer, and I’m going to give him the best I can….I just haven’t figured out how the hell I’m going to add school for me into that balance.

Pneumonia

I am exhausted.  2019 has not been good to our family, health-wise.  Kiran has battled illnesses, and I have inevitably caught them as he is finally getting healthy.  It makes it all last longer – when he’s sick for an entire week and then I catch it and am sick for several days after he’s well again.

But, through all of these illnesses and doctor visits, he has always checked out fine.  Nothing scary, no hospital trips, nothing that required medication beyond fever reducer, rest, fluids.

Until this week.

It took me a bit by surprise.  I am always the worst-case-scenario mom in my brain, but a part of me always figures he will check out fine.  Because again, he has so many times, even though I have always thought “Oh my gosh, what if he ends up in the hospital.”

Kiran and I – and actually Kiran’s dad, too – have been battling some viral stuff (possibly), seasonal allergies, and a darn cough since Easter (the week before, even, for Kiran).  So for a month or more, we have had this hanging-on cough.  Kiran’s has been intermittent and never concerning, until Saturday afternoon.  I noticed it was becoming more frequent and sounded deeper in his chest.

It was keeping him up Saturday night, too.  After going into his room four times in two hours after bedtime, I brought him to bed with me.  I’m glad I did, because he woke up with a solid fever in the middle of the night.  He also seemed to have chills.

My worst case scenario thought?  What if it’s pneumonia?  The cough has been around, but the fever and chills were new.  With the cough, I had already discussed with Kiran’s dad that I thought we should see his pediatrician again Monday (I say again, because we have been in her office 2-3 times to have lungs checked out during the duration of this cough already).  Fever and chills meant we headed to urgent care Sunday morning.

Kiran did so well at this appointment.  It was an unfamiliar clinic and doctor, and he had to have a chest x-ray and get his finger poked for a white blood cell count, but he was a rockstar patient anyway.  And this time, he didn’t check out okay.  We weren’t just sent home, with instructions to keep doing what we were already doing.

This time, it was pneumonia, and we were told he would need to be admitted to the hospital for IV antibiotics.

If all of this had to happen – and Kiran had to be sick with pneumonia – I can say, now, I am glad we were told to go to the ER.  I am glad we were told we would have to be admitted (especially since we weren’t!), because it forced Kiran’s dad and I to make some real-life decisions about what has only been a hypothetical for so long (It’s been awhile since we have had to make a decision about which hospital).

For reasons I won’t get into, we have made a very firm decision that we don’t wish Kiran to ever be hospitalized at a particular local hospital.  This is challenging, however, because this hospital has the pediatric cardiologists, and the other local hospital does not.  We were told the local hospital we wanted to go to may not admit Kiran due to his heart condition and that they would need to transfer him.

We opted to go to the ER there anyway, and we made it clear that if he needed transferred, we would transfer to Iowa City hospital because all of his specialists (including his cardiologist) are there.

We learned a lot about how this is going to work – and that it does work.  I am glad that in a non-emergent situation, we could figure out that it is possible (and quite pleasant!) to have our local hospital of choice be our touchstone here.  We have Iowa City transferring all of Kiran’s medical records to them, so they have his extensive medical history.

That has been a worry for me for so long.  How it would all work (especially since his pediatrician, who we LOVE, is associated with the other local hospital), if we were making the best decision for Kiran, etc.  I am glad we could get those worries alleviated in a situation like this, rather than a situation where Kiran actually had to be hospitalized or it was something serious.

Also, I find it a bit funny that I don’t think of pneumonia as “something serious”.  Not that I don’t take it seriously – I absolutely do – but my comfort level has risen tremendously with illnesses and medical situations in the last four years.  The ER doctor – who was absolutely fantastic and took a lot of time with us, answering questions, explaining the situation, we never felt rushed by her – made sure we were comfortable taking him home.

Two years ago, I probably wouldn’t have been comfortable bringing him home after a day like that.  I probably would’ve wanted a hospital admission, at least for the night.  But it was a no-brainer on Sunday.  Absolutely, we are comfortable, and absolutely, he should be able to rest and recover at home.

But I am exhausted.

 

A Passionate Promise

I was blessed with an unhealthy baby.  I was blessed with a child with disabilities.

I am blessed to be Kiran’s mom.

I know perspective is everything.  I know, because I have been in the before.  I know how terrifying and overwhelming it was when we initially heard about Kiran’s heart defect.  How terrifying and overwhelming each additional concern, fear, diagnosis has been.

But my heart absolutely BREAKS when I read comments like “We just want the baby to be healthy.” or “We had a scare, but in the end, we were blessed with a healthy baby.” or any other take on the same idea.

I get it.  I do.  I have written about it before.  We all want our babies to be healthy.  No one (that I know of, anyway) prays to be blessed with an unhealthy child.  We never ask for life to be more challenging or for grief to be more complicated.

But to any mom out there, right now, facing what feels like the end of the world, in the form of an uncertainty or a greater risk or an absolute diagnosis……I PROMISE YOU, you will be blessed and changed in ways you can’t even imagine right now.  I PROMISE YOU, this tiny human will bring you extraordinary joy.  I PROMISE YOU, every moment that brings the darkness, the hard, the fall-on-your-knees-kind-of-grief WILL BE WORTH IT.

I know, because I have been where you’re sitting, and I have been to hell and back multiple times in the last four years.  I am the first to tell you how hard it can be, but I am also the one to tell you, with absolute certainty:

I wouldn’t change a damn thing.

It’s a long road ahead, but we journey together.  Together, with Kiran, is where I was born to be.  He is what makes the hard road worth traveling.

Oh, Mama, I promise you.