I give good advice.  “Don’t worry about crossing bridges you haven’t come to yet.”

Yes, I stole that advice.  Obviously.  It’s been around for awhile, but I am good at reminding people of it.

Except myself.  This preschool bridge is looming in the distance.  It seems like such a large, long, terrifying bridge to have to cross.  It’s like one of those swaying rope bridges, precariously swinging with every step, the type you’re afraid to even look down from…and I see it.  It’s right up ahead.  How do I keep myself from worrying about it, when it’s all I can think about?

It doesn’t help that before the bridge comes a long path, filled with assessments and meetings and paperwork.  It doesn’t help that my weekly calendar has been filled up with all of these things and will be for the entire time leading up to the actual bridge.

Maybe I’m analogizing wrong.  No, I don’t care that’s likely not a real word.

Maybe I’m already on the bridge.  Does that give me permission to worry?  I seem to be spinning out around this whole thing today.  My brain is a little quieter, because I took the time to email our early access team to ask questions that have been on a list for weeks now.  But I keep looking at the supply list, thinking about what other things Kiran may need in the classroom.  I keep glancing over at the paperwork the nurse gave us on Friday to fill out, and I dread – always – filling out medical paperwork.  How do you possibly list his entire medical history?  You tell me.  Maybe I’ll give her a link to this blog.

I know it’s going to be okay.  I know that this bridge will get crossed, like every other bridge we’ve come to so far.  We will get to the other side.  In fact, I will likely look back and think how silly I was to fear this bridge so much.  With its crossing will come much joy and relief and the continuation of Kiran’s progress in all areas.  I know this.

But I have trouble letting go.

I know, shocker.

I think what scares me the most is I have been able to walk across almost all of the bridges Kiran has come to in his life so far.  And this preschool bridge?  It’s a bridge that leads to other bridges…bridges Kiran will sometimes have to cross without me.  I know every parent faces this.  I know it’s exactly the goal of parenting: to get your child to a place where they can cross bridges without you.  It’s harder, when your child needs more help.  It’s harder, trusting others to walk across with him.

It’s a long road ahead, but we journey together.

I can’t cross every bridge with him.  I wish I could.

Maybe I should build a bridge called Homeschool.

 

We spent a good portion of our Saturday morning delivering cheesecakes.  I don’t talk a lot about this, but I am 49% owner of a catering company/concession trailer, Chef’s Edge/Woody’s Pickle Shack.  And my business partner and I are passionate about and dedicated to raising funds for local organizations who support families living with congenital heart defects.

Woody’s Pickle Shack, it has recently been decided, has lived its life.  Our last appearance will be at the Superhero Heart Run on October 14th.  We were proud to be there last year, feeding all the amazing superheroes who came out to support Help-A-Heart and Heart Heroes.  We cannot think of a better way to go out with a bang.

Chef’s Edge will become our focus, and we always focus on giving back.  September is a special month, since we celebrate Kiran’s heartiversary.  In the heart world, the anniversary of a heart surgery is a big milestone.  Many children born with congenital heart defects live in heart failure for a good portion of their lives.  I don’t think people realize that.  Pre-surgery, Kiran was managing heart failure.  We have had a really blessed story; Kiran has been very heart stable since his first open heart surgery.  Still, September 7th is a big deal.  Living another year becomes more monumental when you have a serious heart condition.

Every September, Chef’s Edge will do a big cheesecake fundraiser honoring Kiran’s heartiversary.  Last year, we raised $305, which we donated through Team Keen on Kiran for the Superhero Heart Run – again, financially supporting Help-A-Heart and Heart Heroes.  This year, we raised $140 through the same fundraiser.  We also did heart-shaped cheesecakes for Valentine’s day and raised $75 for Help-A-Heart last February.

It doesn’t sound like much – but trust me, coming from someone who has benefited from both of these amazing heart organizations, it matters.  And we will keep doing it, because it matters to us.

I was never really one to be vocal about causes.  I never really had something I felt that passionate about.  I am passionate about love – equality – treating people with respect – but never before did I feel the need to get behind a megaphone.  Never before did I become that person constantly posting on social media about that one thing.

This entire blog exists because my son was diagnosed in utero with a heart condition.  My entire life has changed because my son was diagnosed in utero with a heart condition.  My platform, my megaphone, my facebook will forever be about making people aware of what it all means.  Kiran’s heart diagnosis is not his entire story, and my life has changed because of everything else that little man has going on … but that diagnosis was the beginning.

If you want to support CHD awareness and research and help families living in the trenches of the heart life, please consider a donation here.  Likewise, if you just want to support and honor Kiran – his heartiversary Sept. 7th; his upcoming birthday Oct. 21st; his recent television debut earlier this week; his story and his smile and his life – THIS is how we ask you do that.  It is the most meaningful gift you could offer our family.  Every dollar counts:

https://my.superheroheartrun.com/team/187464

 

How?  My question of the day.

How do you summarize Kiran?  How do you take the past three years of daily life and help a stranger understand who he is?

How do you trust an assessment to tell you what you need to know?  How do you make sure the forms say enough to help these people help your son be the best he can be?

How do you possibly wave goodbye and leave your heart inside a classroom, knowing you cannot be there to protect him, to be his voice, to advocate, to help him acclimate….?  How do you entrust others with this most precious task?

How do you make sure he will be safe and feel loved when you’re not there?

How am I ever going to leave that school next month?

You cannot force a child to eat.  That about sums up the frustration of my life.

For those who have followed our story from the beginning, you know all about our food saga.  I was prepared for challenges once I found out about Kiran’s heart defect, but I never expected us to still be in the trenches with it (or rather, perhaps, in the trenches once again).

Here’s our food story, in a nutshell.

The dream: I would be able to breastfeed primarily, even if he needed some formula to boost caloric intake.  We would NOT go home with a feeding tube.

The reality: I barely even got a chance to try breastfeeding.  I didn’t have much support with it (it was the weekend by the time we trialed), and the importance of calories and fortifying was already being pushed in my face.  I was too scared – too meek – at the start of Kiran’s life, so I just allowed myself to be pulled in whatever direction the doctors were pointing.  It is one of my bigger regrets, but I choose to not dwell on it.  I pumped exclusively (and fortified with formula for calorie/volume needs) for the first six months of Kiran’s life, and then he went to formula.  He did come home without a feeding tube, but we ended up placing one within a few days.  Then we went a period of time (three months?) when he took his entire intake orally.  Then came the feeding tube again (it was just too much work for his heart pre-surgery), the g-tube surgery, and here we are.

The dream: His oral intake would take off after open heart surgery, and we would be off the g-tube in no time.

The reality: He took off for a minute, and then he went back to bottle refusal.  His skills at the time were way too far behind to safely take in everything by mouth, and we had to rely on the tube for his full nutrition, using oral eating as mere practice.  We are now over two years post-op, and until the last month or so, this has been our reality.

Practice does make – well, not perfect in this case – but it makes progress!  As I shared, his feeding team in Iowa City was really impressed with his skills acquisition in the last six months, and his weight gain was more than they want to see in that timeframe.  He is now taking enough by mouth for it to start counting toward his calorie needs.  It is a really big deal and a really big step to decrease calories through the tube – and it is also the start of a really big rollercoaster ride, with Kiran showing us how much he’s willing (and safely able) to do orally.

The dream: The reduction in calories will make every meal start going so much better, and he will love eating – and finally, finally, one big piece of our everyday life will become “normal”.  We will be off the g-tube soon!  (This one truly is a dream and, unlike the other two, I am stating this one a little tongue-in-cheek – I know a LOT more now.)

The reality: He is having some really good meals – more than he’s had ever – and it’s a very exciting time!  He also has some really normal-for-him meals and some really total-refusal-type meals…and I am finding those to be more frustrating now.  For the longest time, I was in a fairly good place in my head around eating, because we really weren’t chasing some giant goal.  Now, I feel the pressure.  I noticed today at lunch (one of the really good meals!) how much I am letting how mealtimes go affect my stress level and overall mood.

So, really, I’m just here to remind myself of our journey.  It hasn’t been perfect, and it certainly hasn’t gone the way I wanted it to.  But Kiran has always gotten the nutrition he needs, and he has grown big and strong because our food journey has been what it’s been.  And we have come really far!  His skills really have gotten so much stronger, and we are seeing an eagerness to open his mouth for foods we have never seen before!

This IS going to be a rollercoaster.  It’s going to be a long-term process.  We may never fully make it off the tube.  I know these things.  And I just want to remind myself to take the pressure off.  I don’t want meals to become the stressor they have been in the past.  I want to celebrate and enjoy the good meals and just let the bad or mediocre meals roll off my back.  Because more good meals are around the corner for Kiran.

 

I have never sugarcoated our life. Parenting a special needs child can be physically, mentally, and emotionally draining.

Lately, I have been overwhelmed and exhausted. I push forward, but everything is magnified – all of the physical, mental, and emotional stuff becomes heavier to carry.

Library story time today, the heaviness was evident in my movements. So much, Kiran is unable to do. I have to be his hands and feet, to wiggle and dance during the songs. I’m going to be honest, as I have always been: my heart wasn’t in it today.

And then after, when I put Kiran in the wheelchair and we started heading toward the doors, two kids approached him. And my heart grew light. And I was happy I could be Kiran’s voice. I was happy I could help him make friends and have a joyful moment.

The heavy became so light, I could have thrown it across the room. The burden became a joy.

Parents, hear me: Let your kids approach. Let them stand awkwardly and stare. I can take it from there. I can be my son’s voice. I can show them the light-up wheels on his chair. I can help facilitate Kiran being just another kid who wants friendship.

Please. Encourage your kids to say hi to everyone. Tell them it is good to be friends with all people and that friendships don’t always look the same.

Believe me. I cannot possibly be the only special needs parent who feels this way. It lifts the spirits, and it reminds me how lucky I am, to be Kiran’s mom.

Kiran has just been making exciting strides in so many areas in the last month!  He continues to do well with his walker and is so interested in taking steps.  He still needs to develop a lot of strength and stability with his standing – and we need to be able to trust him (he still decides to just fall over periodically) – but it is just so heartwarming to see his little legs and knees working as they should!

We had a follow-up feeding clinic appt in Iowa City last Thursday, and it was (unexpectedly, for me) a very exciting appointment!  They were so pleased with his skills, and he is actually gaining weight a little faster than they would like….so….we cut back calories through the g-tube!  They want to see if this will make him even more interested in oral eating and if he can maintain a healthy weight gain pattern with fewer calories through the tube.  I had no idea we would even be at this point – and it’s a little stressful for me, to be honest – but we will be sending his weights once a month to the GI doctor (Who, by the way, I love – it took 3 GI docs for us to get one we like, but I am so thankful we have who we have now!) so Kiran will be closely monitored through this trial.

Feeding continues to just be interesting.  Kiran had a couple weeks where it just wasn’t going well, and he was having excess saliva so more coughing episodes…but in this past week, he has shown me some really amazing meal times.  He is accepting bites really well and accepting his liquid washes too (We are to attempt to give him a drink after he swallows each bite – this helps clear the food and seems to be helping with his tendency to occasionally aspirate minutes after he swallows.)  Before his nap today, he had a great meal, accepted every bite of puree I had put in the bowl (a tablespoon probably, total) plus two veggie straws plus accepted his liquid washes like a champ!  For the first time in a long time, I have hope that the g-tube might not have to be forever (But, it is still okay if it ends up having to be).

We had an exciting morning this morning, too!  A new inclusive playground just had its grand opening yesterday, so we couldn’t wait to check it out today.  A lady was actually there filming for a segment on Iowa news (Tomorrow, Iowa peeps, channel 13, sometime in the 5-7 am timeframe, Kiran and I might make it on TV) so she filmed us playing and interviewed me on camera about the park.  Pretty neat experience.

But – the park – game changing.  Our favorite part was the wheelchair swing.  It is the only one in the metro (there are two other inclusive playgrounds – that I know of – and we have been to both; neither have a wheelchair swing).  Everyone who knew me as a little girl knows I LOVED swinging.  I have always wanted – and tried – to get Kiran to love swinging.  Today, I saw him enjoy it, for the first time ever.  I really think he has never felt safe and secure, steady enough to enjoy swinging at a park before today.  Yes, I cried.  There is also an accessible merry-go-round, a really neat music area, a rocking “boat” you can wheel right on … it’s a really neat playground, for all kids.  I am pretty sure we will be making at least a weekly trip there!

My heart is just full today.  So much hope, so much joy, so much progress.  This little man never fails to amaze me, and I know we have some exciting times ahead.

I seem to be inside another period of time in my life when I can never get everything done.  In fact, I should be showering right now, while Kiran is asleep.  I will never apologize for not keeping up on the blog like I “should” – like I want to, both for me and for those who do follow along with Kiran’s journey – because when I do not write frequently, it means two things: 1) I’m busy living the journey alongside Kiran and 2) I am not boiling over with the enormity or difficulty of it, therefore not needing to write frequently.

Kiran celebrated his second heartiversary on Friday.  I cannot believe it has been two years since his open heart surgery.  Whenever I think back, I still have absolutely no idea how I made it through that day – other than, did I really have an alternative?  We celebrated with Nothing Bundt cakes, and Kiran LOVED the frosting, opening his mouth eagerly for bite after bite.  I now know where his birthday cake will be coming from….

My facebook sentiments on Friday:

Kiran Aaron Valji, you are my heart. Two years ago, you taught me lessons about strength and love. I think back to surgery day, and I have no idea how I got through it. You were away from me for about 15 hours total that day, and every minute was a rollercoaster ride.

You have come so far. The surgery has helped your heart function tremendously, and I am still wrapping my head around not seeing your cardiologist for an entire year.

I am so thankful for your story and our journey together. You are writing your life, and I get to walk beside you.

 

Kiran decided to show us all just how far he’s come at therapy on Friday morning.  His physical therapist brought a walker and tried it with Kiran for the first time.  He did a great job, holding on far better than any of us anticipated and taking steps (with great support and nudging along).  We were all so proud of him!  The following day, on his third attempt practicing with me at home, he took several steps in a row with no prompting and kept his hands on the bars where he was supposed to the entire time!  I was lucky enough to catch it on video, so it will forever be documented in the best possible way.

We celebrate so joyously, with the knowledge we still have a long ways to go.  My new mantra (and hashtag, when I remember to use it) has truly become “It’s a long road ahead but we journey together.”  I should really figure out how to say “It’s always been a long road, but look how far we’ve traveled already!”….without it becoming too long a mantra.  Maybe I should take up poetry writing again.

I am coming face-to-face, as I have many times in the past three years, with who my people are…and along with that, who they aren’t.  It is a difficult lesson, and I struggle with giving people too many chances.  Chances to be involved with Kiran, chances to care, chances to simply show up and be with us at various points on the journey.  I am so, so, SO lucky and thankful for all of the people who do – and I am often surprised.

Family isn’t really blood after all.  It’s why I coined the term Friendamily.  So thank you, to Kiran and my friendamily, for celebrating Friday with us, in person and online, and for sharing in our joy as we watch him progress, literally, one baby step at a time.

It’s a long road ahead, but we journey together.

When you have a child who has sensory aversion things, feeding ability things, body awareness things, and other various things….

You end up celebrating a whole lot of things.  Odd things.  Things I never would have guessed would make me laugh and cry at the same time.

Off and on for over a year, we have tried to expose Kiran to vibrating toys.  They are very scary for a child who is unsure about his body and environment.  They make a funny noise, they feel odd … for over a year, off and on, Kiran would just go into fight or flight mode when he heard the SOUND of a vibrating toy.

We kept trying.  For many reasons but one big one being – if we could get him to interact with vibrating toys and eventually allow vibrating tools inside his mouth, this could potentially hugely progress his oral awareness and eating skills.

Today, his OT and SLP decided to focus on exposing him to vibration again, with this end feeding goal in mind.  And – something changed for him today.  He was actually willing to reach out and touch the toys, put them on his legs, touch them again…guys – HE WAS INTERACTING WITH VIBRATING TOYS!

See?  It’s goofy the things we get excited about!

With his success at therapy in mind, I decided to pull out the vibrating toothbrush I bought ages ago, in order to be able to expose him at home.  The thing he had never once even been willing to touch before today.  And – within five minutes of me just turning it on, putting it in front of him, and letting him be in charge – he had that thing in his MOUTH!  Granted, he wasn’t sure he liked it – but he tried it THREE TIMES before tossing the toothbrush to the side.

This was when I was laughing and crying.

I have no idea what work we have done to get him to this point, where he feels comfortable and confident to explore vibration finally – but this was a huge deal.

 

The cognitive evaluation showed Kiran to have an intellectual disability. He tested at the moderate level but due to his young age, the psychologist put mild intellectual disability as his official diagnosis at this time. His observations and our questionnaire assessment both matched really well, and he said Kiran is currently at about a 6-7 month old level cognitively.

6-7 month old.  This was not only incredibly hard to hear – when asked before we started, I guiltily placed Kiran at about a 1 year old level – but I don’t fully buy into it.  Kiran’s global delays definitely factor into the way these assessments are written.  He understands far more than a 6-7 month old.  But I also understand why the assessments would place him in that age range.

He wants to see him again in two years. He expected to see delays, given the MRI results, but he (and my screaming internal voice) was still asking the question why?  Why is his brain developing this way?  Why isn’t he learning more quickly?

Why, indeed.  All we can do is keep moving forward and hope to learn more.

I am currently in stoic mode around this.  The best part?  He is still Kiran.  I truly feel like I can take any diagnosis in stride, as long as he never receives a terminal one.

He’s not yet three.  He is learning and progressing in every area – slow and steady.  According to the summary report, this intelligence evaluation “indicates Kiran requires a lot more assistance with learning and daily life activities.”  Guys.  I didn’t need to go all the way to Iowa City to know this.

But.  This gives us more information as we approach the changes coming in just a couple short months.  And it gives us the official evaluation document we need once a spot opens up for Kiran on the intellectual disability waiver.  So it was a necessary step – and another piece to the puzzle that is Kiran.

It’s a long road ahead, but we journey together.