This past year has been challenging. I will never, ever sugarcoat that reality or pretend otherwise. I look back, and I wonder how I am still standing.

But.

Having a front row seat this past year is something I would never trade. Not for anything. Seeing Kiran’s daily progress has been exciting. I have witnessed so many aha moments and so many tiny steps toward understanding.

He has grown in leaps and bounds with his vocabulary understanding. He was a rockstar this morning during his session with his teacher, identifying five common objects in pictures (We have been working on wheelchair, book, ball, glasses, and cup) with no prompts and on the first try…and his new picture (walker) only took one prompt before he got it! He is working on a lot more vocabulary with his SLP from Childserve, too, and is making progress identifying certain toys, animals, and articles of clothing.

And of course, the biggest, most obvious goal he achieved is independent motion in his pacer. I still can’t believe he’s walking, and I am so amazed with how well he is doing! He is starting to show signs of fatigue and frustration with it at times, but I know we will build up excitement and endurance with summer activities and practice.

Today, we had a virtual meeting with his school SLP, AAC person from the area education agency, and his Childserve SLP. We are officially moving forward attempting to get an eye gaze communication device for him to trial. This is where everything being virtual for over a year might just pay off! Everyone has noticed how much more attentive he is to the screen and how much better he is getting at shifting his attention with his gaze. This device will look similar to an ipad and has cameras that will calibrate to his eye placement and movements, and he will be able to choose a message or object by looking at it. We will start with cause and effect games – For example, by looking at this monkey, he will play the drums. His cause and effect understanding has gotten so much stronger, too, so I am optimistic about this new direction.

I am also overwhelmed. Communication has been one of the most emotional and frustrating journeys with Kiran. We are definitely seeing a lot of progress with his switches and more intentional communication – and certainly more of a desire at times to make choices and tell us what he wants – but it’s been a long time coming. And all of these different choices – the technology, the vocabulary, the system, the mounting – holy cow.

It makes me excited, though. I’m excited to learn about it as Kiran’s mom, to help him with his specific equipment and needs. I’m excited to learn about it as a grad student, as I am able to hone in on my interests as a future SLP myself. And it makes me excited to keep learning as a student clinician and as a therapist someday. I look forward to being able to help a parent down the line who feels as overwhelmed as I do about it right now. And I think I will be uniquely equipped to do so.

This whole life journey continues to take me by surprise, and I never once envisioned being anywhere near where I am right now, in any area. But despite everything that’s hard, I can honestly say this: Overall, I am happy. I am blessed beyond measure. And I wouldn’t change a thing, because I wouldn’t want to see the chain reaction that change might cause.

It’s a long road ahead, but we journey together. Here come some new adventures!

I am down for the count today, and it is giving me a taste of how hard it’s going to be to let go. This has been a year. Covid started just months after I started taking serious steps to let go and get Kiran out into the community – and into others’ care.

Now, he has been in my care for the majority of the time for over a year. And I am having to learn to let go again. To trust others with his care.

He kept looking for me this morning, while Eric gave him his breakfast. It’s going to be an adjustment for him, too. And now, he’s on a walk with his Nana so Eric can mow, and I can continue to rest.

Similar to that newborn, brought into this world during flu/cold season, with a serious unrepaired heart defect, I am so good at placing the bubble around him. It is my strength. Protecting him comes easily to me.

But where I grow? That’s where the bubble gets stretched and expanded and eventually, popped. It’s the harder work of helping him achieve his own place in this world – his own community, friends, personhood.

And because it’s harder, I think it’s more rewarding. I know we will get back there, to a place where we are both comfortable not being physically next to one another all the time.

It’s important work. Both the protecting and the nudging. We’ve got this.

It has been both a really, really good week … and an overwhelming one. Kiran went back to in-person therapies at Childserve. Both days wore him out completely (and me, too). I knew that it would be important for both him and me to ease our way back into the world, for many reasons.

It’s been a year.

A big decision was made this week. After one more session next week with the beloved physical therapist he has been working with since he was just over a year old, Kiran will be taking (at least) a three month break from physical therapy. He has been working SO HARD for over four years, and hitting the walking milestone has been a huge accomplishment. She wants us to just let him walk and walk and walk – and really enjoy and understand this new mobility. And increase endurance. Other than that, the only home programming she wants us to continue is standing practice. Otherwise, we have been very firmly instructed to let him have a break.

I am beyond proud of my boy.

My logistics brain has not stopped running in circles since the day he walked last week. I am now thinking through all of the different scenarios and when it will be appropriate to take the pacer and when he will need the wheelchair – and when he needs both. Both is no easy feat. I did figure out safely transporting everything in my vehicle, because we needed both pieces of equipment for therapies yesterday, but it involves taking the wheelchair completely apart, and I can’t have anyone else in the car besides him and me.

Kiran continues to keep me on my toes. I can’t help but continue to grow, being his mama.

I am still experiencing minor disbelief that he is able to move independently with his pacer. I knew (I hoped) he would get there, but I had no idea it would happen so abruptly. So much of his progress has been in tiny steps, blurring the ability to really say “On this day, Kiran accomplished this.” But this was truly like a switch got flipped and the stars aligned, and his body and brain said “It’s go time! Let’s do this!!!” … and he hasn’t stopped being proud.

And I am pretty sure I will never stop being proud.

Now, we continue on. It’s exciting that now when I say “It’s a long road ahead, but we journey together”, I get to actually journey BESIDE my boy. He can take his own steps now, and I get to walk alongside him.

This year holds a lot for us. The challenges looming are plentiful, and I never pretend anymore to have any idea where we will be at year’s end. But I’m showing up for it. I’m here. And so is he. Working harder than ever. Moving forward, together.

I think maybe it just hit me, because a comment I read on facebook from a former therapist of Kiran’s just made me burst into tears … my boy walked today.

He walked in his Pacer – the gait trainer that has been sitting in my den for the past several months, because we have been working with a walker and the Kidwalk (which is another style of gait trainer). I was getting ready to take the Pacer back to where it came from, but I hadn’t found the time. For the first time in over a year, his school PT came over for an in-person session, mainly to make some adjustments to the Kidwalk. She essentially said “Hey, if the Pacer is somewhere easy to get to, let’s just try it….”

And something for Kiran just…clicked.

I really believe that the independent movement Kiran experienced with the Kidwalk helped. I really believe that the timing was what it was. His PT made some adjustments to the Pacer that helped him move it forward. Placement in the driveway, right where there was a tiny downhill slope (like, really tiny) helped him get going. Once he experienced it, he kept walking! Little tiny uphill the other direction on the driveway and down the sidewalk. And in the hallway inside. All of it.

He was walking, independently, with the help of a mobility device. The independence is the biggest thing for me, as his mom. And I could tell he was so proud of himself, which just filled my heart.

My. Boy. Is. Walking.

Prior to today, the only milestone I have noted for him is the first time we heard his laugh. I have it in my “Special Days” calendar in my phone, and it repeats every year. Today, I put a second milestone in that calendar, set to remind me every year.

Today, April 7th, 2021, my boy walked.

I am in shock and in awe and so so so so SO proud of him.