Update

I will probably write far less now that I have added online classes for me and am striving to strike a balance in all areas of my life.  It is good for me to be forced into a different identity other than “Kiran’s mom” – good for me to learn to prioritize other things.  Kiran is still almost always my first priority, but I am learning to prioritize my learning, other loved ones, etc in this growing process I find myself in.

That being said, I wanted to update on a couple things I am excited about for Kiran this fall.  Last week, he started his third intensive in the universal exercise unit (we lovingly call it “the cage”) for physical therapy.  We have high hopes for some strength and balance and confidence in his abilities to get to standing, stand, and even improve his walking attempts.  He has been doing such a great job so far, and we are just into week two.

It makes for a busy fall.  Preschool just started, and we are still getting used to that…and now we go to Childserve three afternoons a week, for a total of five therapy sessions there.  There are days I feel like all we do is run around.  And it’s only just begun.

We have had some really productive meetings with both of Kiran’s speech-language pathologists lately, from Childserve and the AEA, to get everyone on the same page with next steps.  As we start discussing trialing devices, we have decided to borrow a large ipad with his four core words on it (still plugging away at “go” “stop” “like” and “more”), along with a flexible mount that can be attached to his wheelchair, in the interim.  It sounds like that will be brought to school next week, and we will be allowed to bring it home to practice as well.  Kiran seems far more motivated touching a device and getting that touch/vocal feedback than he was with them just on a placemat in front of him.  It also works better than the little mac button we were practicing on, since ours can only do one word at a time and needs to be re-recorded every time.

There is a lot of hope and excitement for these steps forward.  Physical therapy and speech therapy are our biggest focuses this year.  He still has occupational therapy at both school and Childserve and vision therapy at school, but we are currently on a break from feeding therapy.  We really want to see where his gross motor skills can get to this year, especially in regards to walking, and we REALLY want him to start being able to communicate with us using language on a device.

Our team is seeing good things too.  As for physical therapy, our Childserve therapist let us know she does see him walking.  Someday.  Maybe with a gait trainer or walker for added support for the duration.  But walking.  This means so much, and we see his skills getting him there.  Our speech therapists are both seeing gains in cause and effect understanding, and our AEA SLP did a preference assessment for him yesterday with telling results.  In the past, Kiran hasn’t necessarily shown a strong preference for any item over any other, but he is growing in his likes and dislikes too.  It is amazing to see these preferences come out and to watch his personality really develop.

I’m just along for the ride.  This is Kiran’s path, and he is in charge.  It’s a long road.  It has taken us literally years of therapies and practicing at home and working hard to get here.  And it may take years to get to the next really big step on the journey.  But we are moving forward, and for that, I am thankful.

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Three Year Heartiversary

Three years ago today, at this moment in time, I was where no mother wants to be.  Powerless.  Anxious.  Waiting.  Waiting to see if your surgery would be deemed a success.  Waiting to see if you would be the same boy I had to hand over to the surgical team that morning.  Waiting to see if you would be returned to my arms.

I didn’t expect today to be so emotional.  Something about this year is different from the previous years.  Maybe because so much has happened in the last three years.  Maybe because you are a big boy now, a preschooler, and as each year passes, I am more and more thankful for the experiences you are having.

I am more and more thankful that you are still here.

We went to Dylan’s Dragon Walk this morning, to remember and honor the heart angels, the ones who are not still here with us.  But they are.  You see it in the ways their families carry them around in their hearts, keeping them here with us.  Alive in them.  The strength of these families astounds me, and I was honored to attend with you today.  We blew bubbles in their memory, you and I saying as many names as we could remember, because it is so good to say their names and remember these warriors taken from us.

During the bubble remembrance, the song “All of Me” by Matt Hammitt was playing.  I can’t listen to that song without crying anyway, and the intersection of everything: your heartiversary, remembering the heart angels, the bubbles, the strength, the heartache, the joy, and you, wrapping your arms around me in the middle of it all….It’s a wonder I didn’t melt into a puddle of tears.

“You’re gonna have all of me
‘Cause you’re worth every fallen tear
You’re worth facing any fear
You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me
Is where I’ll start”

I have given you all of me from the very beginning, and I will continue.  Day after day.  It’s a long road, my sweet boy.  We are three years post open heart surgery and almost four years into your life on earth, but your story – our story – is really just beginning.  We write it every day.

I had another song that has been resonating with me lately that I wanted to share today, three years after the longest, most difficult day of my life.  This one is for both of us:

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Fight On, Fighter by For King and Country

“I was there on the day that your world changed
You were scared, unprepared, for the heartbreak
Everything you knew faded out of view
Stole a piece of you
If I could, oh I would be a hero
Be the one who would take all the arrows
Save you from the pain, carry all the weight
But I know that you’re brave
Fight on, fighter
Don’t let anyone steal your fire
Fight on, fighter
The Spirit is alive inside ya
There’s a power that you hold, that you lock down
Let it breathe, give it wings, set it free now
Time to make your mark, break the prison bars
Show them who you are
Stronger than you ever thought
I know you’re stronger
Braver than you were before
You know you’re braver
Oh, no, you don’t have to be afraid
Together we’ll face it
So don’t ever stop, no matter what
‘Cause you’re gonna make it”
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We journey together, my sweet, brave, strong little man.  You’re my favorite human, and you’ve taught me more – changed me more – than any other.  I am so lucky to be your mama … and I’m glad you’re here.