Let Them Stare

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.

Feeling Full

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.

Second Heartiversary

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.

You are my favorite little man. My favorite human of all time.

You’ve got the biggest, best heart of anyone I’ve ever known.

Happy Heartiversary, my precious boy.

 

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.

Vibration Celebration

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.