Dear Deer

Kiran had an appointment last Wednesday with his orthopedic doctor in Iowa City. Feet are looking good, and it was an uneventful trip …

Until it wasn’t.

My dad drove us – this is our usual routine – and on the way home, we hit a deer on the freeway.

We are all okay. I have replayed every alternative scenario in my head at least one thousand times since it occurred, and there are so many ways we could have really been not okay. Thankfully, it was an adolescent deer and the way we hit didn’t cause much jarring inside the car at all. Thankfully, my dad is an outstanding driver who was aware of our surroundings and knew it was safe to brake but not to swerve, so no other vehicles were involved in the collision. He was also able to expertly guide the car to the side of the freeway before the engine gave out.

I am beyond thankful that we are all okay. I am thankful we were able to be safely rescued off the side of the freeway, and the car got towed back to town. I am thankful I have good insurance.

I am so bad at allowing myself to be upset, though. And I’m trying to remind myself I can both be so thankful and also so overwhelmed and bummed at a sucky situation.

My car is almost certainly totaled, according to the auto body shop. I haven’t gotten final word from my insurance company on that yet, but my guess is, with its age and mileage, they will follow the fact it hit the “total threshold” as it was put to me.

As with everything else lately, we had a solid plan in place on the timing of our next vehicle purchase. A solid financial plan that I felt comfortable with and good about. And now I have been thrown into a situation where I have to move quickly and make a decision now.

When it rains, it pours, and so many other things occurred at the end of last week that has made life just feel completely overwhelming. I am beyond tired.

But. Moving forward with a new vehicle for Kiran’s ever-developing needs isn’t such a bad thing. Now that he is using his pacer, it will be nice to have a vehicle that fits both the pacer and his wheelchair without having to take the wheelchair all the way apart. As for everything else, well, I just have to keep moving forward for Kiran.

Every decision I make, in every situation, with every person, is made with Kiran in mind. I will continue to keep his best interest at the forefront as we find a path forward.

This, too, shall pass.

But it still all sucks.

Daily Progression and Communication

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!

Bubble Stretch

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.

Forward Steps

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.

Milestone

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.

Next Steps – Oncology

Kiran’s symptoms have remained stable over the past few months, so today’s visit was pretty straightforward.

The medical assistants who draw blood for labs in the oncology department are truly incredibly good at their jobs. Kiran has notoriously been a challenging poke, and I have felt, both times, the blood draw has gone smoothly. I am thankful for that. It’s nobody’s favorite thing.

Dr did a quick exam. She asked me to send photos documenting the flushing symptoms because she plans to present Kiran’s case to the adult neuroendocrine tumor team in a few weeks. I guess neuroendocrine tumors are fairly common in adults but rare in children, so she wants to make sure she isn’t missing anything. I appreciate her.

I did ask if she has any other thoughts, aside from this tumor, as to what might be going on. She really doesn’t. His symptoms aren’t really consistent with anything else, but it may just be a part of his genetic syndrome (since we don’t know much about that either – this kid just has to be rare in every area).

So. We wait on lab results and suggestions from the adult team. Depending on all of that, it might be time to plan for more imaging. Watch and wait. Wait and watch. The path we walk on the daily.

Whisper Voice

Kiran and I were reading books and singing songs and snuggling on the couch before his bedtime tonight. He was getting sleepy, and he has actually been pretty snuggly lately which hasn’t historically been the case.

He grabbed a handful of my hair, like he does – the one behavior we are consistently, constantly working on modifying – and I whispered to him “no grab, no pull – can you let go of my hair?” – and he whispered his vocalization back to me!

I continued whispering questions that would occasionally get a quiet voiced (not *quite* a whisper but his version) response, and it was truly the sweetest, cutest interaction in the world.

It was just something I never want to forget, because it filled my heart during a time my heart needs filling.

I love him so big.

Weepy Wednesday

Here’s some real talk, on a random Wednesday, almost a year into a pandemic.

I’m weepy today. I don’t know why. I have been in a funk all afternoon and on the verge of tears.

So. I did a few things to try and take care of myself.

1) I sat down and made a proposed plan of Kiran’s re-entry (and mine) into the world. It is proposed because I don’t get to make the decision alone, but I feel good about what I came up with, timeline and all. I am so ready and cautiously optimistic the numbers will stay low.

2) I sat down with Kiran and watched Daniel Tiger while snuggling. This isn’t necessarily something new – we try to make time most days at 3:30 for good ole Daniel, but sometimes I don’t stop and sit and be.

3) I texted Eric and asked him to pick up Totino’s pizza because we are watching Ghostbusters tonight. If I could have made it happen on my brother’s birthday, I would have. But it seemed I needed to stop and honor and celebrate him. So we will tonight.

I haven’t written a lot lately for many reasons, but the truth is: This has been a really difficult season for me. Many factors play into the fact that this fall/winter has been one of the most challenging times in my life. I am working toward spring in my heart and in my mind. I haven’t lost hope. One step at a time, always.

One Step at a Time

This is proving to be an important motto in our world. One step at a time. It’s one of the things Kiran and his journey have taught me: I can’t overwhelm myself with all of the future what-ifs. I have to look at the place we are currently walking on this journey, instead of ten or even two steps ahead. (One step ahead is important for planning/anxiety reducing purposes, of course, but rarely two).

We had a conference call with Kiran’s oncologist yesterday to go over the results of his labs from a few weeks ago. Only one was elevated – substance P – but she feels it fits in with his flushing symptoms and could still be indicating the presence of a neuroendocrine tumor.

Don’t google that. Just don’t. Stay on this step with me.

Substance P is also something that can get elevated due to stress/emotional levels, like…getting blood drawn for labs. But of course, he has the flushing symptom happening as well, and that does not (as far as we can tell) correlate with change in stress/emotional levels.

Neuroendocrine tumors are apparently very difficult to diagnose. They are slow-growing tumors, most often found in the intestine, though sometimes in the neck or lungs. This is why we have been waiting for imaging, because oftentimes in the early stages, the tumor/lesion can be so small that it cannot be seen in a CT scan. They take months or even years to change in size, so since Kiran’s symptoms haven’t changed in a year, nothing is urgent at this time.

Our plan is to repeat the labs in two months (from the last lab draw), sometime in March. If we are still seeing elevated substance P or any other changes to other numbers, it may be time to discuss a CT scan for Kiran. This would be a scan going from neck to pelvis, to cover any of the areas a neuroendocrine tumor may be growing.

In the meantime, we have our usual symptoms to watch out for, and I continue to document anytime I notice the unilateral flushing. It is still so bizarre to me how quickly this went from probably nothing to a possible tumor – it seems Frey’s Syndrome has been ruled out, at least by the two specialists we have been working with to get answers (neurologist, oncologist). It’s too bad. I liked that diagnosis so much better than this potential one.

One step at a time. I am aware we may still find this is just something else about Kiran we can’t quite find an explanation for – it isn’t necessarily or for sure a neuroendocrine tumor. But it might be, which is why due diligence is also the name of our game.

One step at a time, with some planning for the next step. But this step? It’s big enough to wrap my head around and accept and handle. I don’t need to take on the next one, just yet. And Kiran doesn’t need me there either. He needs me right here, walking next to him.