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.

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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!