Nurshable, PO box 279, Great Meadows, NJ (2025)

12/08/2025

"You need to calm down."

It feels a way.

"I can see you are upset. How about we make a cup of tea/hot chocolate/gatorade and go snuggle down on the couch and talk? I'm having a hard time listening to you as carefully as I need to right now. And I want to make sure I am able to hear what you are trying to communicate with me and that you can hear what I am trying to communicate with you."

Even "We need to calm down" or. "We need to take a chill pill. Deep breath. Drink some water. Remember we don't hate each other and try this conversation again" comes across better than "you need to calm down".

While it may be true and good advice it's also accusatory and implies the other person is the problem and that the person issuing the advice is the calm and logical one. Which... When I have used the phrase, I have been. But I have also been the person that has accidentally upset someone and it could just as easily be an invitation not a demand.

12/02/2025

When my four year old daughter mostly spent time with me, she was very cautious about parking lots because I was very cautious about parking lots. At fifteen months old she would get worried about a car driving by us on the road unless I acknowledged that there was a car and verbally mentioned that I was staying on the grass and the car was staying on the road. Simply because I mentioned this to her so many times.

I have very firm rules around how I move through parking lots and how we all stay together so that we are big enough for cars to see.

Honestly, as a driver, I think that all pedestrians in parking lots should group together to be more visible because I absolutely become very focused on making sure that the people I can see around me are accounted for as I back up my van. And sometimes a new person will pop up out of nowhere and I'm always always worried about that person being a child in my blind spot. If all people grouped together and kids grouped together with a taller person there would be fewer things for drivers to maybe accidentally run over. 😂

Since Skylark has been spending time with more adults while my husband has been in the hospital, she has adopted parking lot habits that feel unsafe to me.

I have been explaining to her that everything I have taught is still valid.

It's funny feeling mildly like a helicopter mom because I mostly get comments about how laid back I am. But it's not really me being laid back. It's my kids being trustworthy and predictable so I can casually observe my surroundings and react/redirect as needed with a lot of leeway.

I have noticed that I am very proactive because I do not enjoy reacting. Reacting requires response time and doesn't always get taken seriously, and doesn't always have a predictable result.

If I see a car moving and I know that my young child is following the established protocol I don't get a spike of adrenaline. I don't need to react. I can just say "car" and my kid will respond in the way that any rational human being responds to potential risk. And if they hear a car start or see a car move first, they say "car" and start car protocol. (Group together so we are a large identifiable object and move predictably in straight lines while being aware of what the driver can and cannot see.)

Things get tricky when kids spend time with people that approach things differently and that either use a louder voice when things are dangerous or they don't say anything if they're predicting the car's movement based on their adult level of skill. (I say "car" even if I know and understand that the car is not an immediate danger because I don't want any kid under maybe twelve making that assessment and choosing a less safe behavior. 😂)

It puts me in the position of having to specify that this specific car is dangerous. Which seems reasonable. I am the adult, afterall.

But I'm deaf and don't feel like this is a good thing for me to have full responsibility for. And even if I wasn't deaf, I drive an EV and a hybrid and work in a public park where people walk on the private park roads and a lot of adults do not even recognize that the car is there and kids that are a lot older than toddlers will stand right in front of my car looking at me and making eye contact with me as I stop and wait patiently for the parents to notice that there is a giant green van six feet away from them just sort of sitting there. 😂 I don't honk because I'm not in a rush.

I want my kids to be the kind of kids that will see the car and yell "CAR" and get everyone out of wherever the car is the way I teach my kids to do. And I want them to be the sort of kid that makes sure everyone knows, not the kids that remove themselves silently to the side while everyone else is still in the road.

I am absolutely confident that other adults are keeping the kids safe and that it just looks different from what I do.

And yet , I do not enjoy driving through the parking lots of local schools because I remember being in Junior High school and taking the late bus that we shared with the high school and hearing about the teenager that was hit by a car in a parking lot and that had to be life flighted to the hospital.

I do not have magical ideas about the driver probably being a bad driver or the teenager doing something stupid. It's very easy for me to imagine a situation where the two people just didn't see or hear each other or know how to react or respond in time or the teen assuming the driver saw her and the driver paying attention to some other hazard or pedestrian.

Anyway. Yeah. I treat parking lots like fire drill practice. Every time I walk through them. Just like I try to always ask if everyone is buckled in before I turn on my car and just like I do head counts and check if the car is empty before I lock it.

What are your routines that feel like basic safety measures?

I tell my kids to nibble choking hazard foods instead of popping them in to bite them with molars. And I prefer this over cutting the foods because it carries into the future.

I tell my kids that when we strain pots of boiling water in the sink we have to announce it and clear the splash zone of other people especially people that are shorter than the sink. And that we carry the pot with our fingers up through the handles not down through the handles and we always use two hands. I used to insist that the cold water needed to be running in the sink (with the faucet turned over to the side so it would be out of the way) so that if boiling water fell the cold water could immediately be sprayed without hesitation. But I've grown less careful over time as long as no one is nearby.

11/30/2025

While I was cleaning the stove the other day my daughter's older siblings were helping her with all the things she could not reach.

It reminds me of when my nine year old was two and her older siblings helped her find the safety scissors that I kept hiding because she liked to cut her own hair.

In fairness.. I would also facilitate the drinking of pickle juice. But I would probably have poured it into a cup so that I didn't feel compelled to eat all the pickles so they wouldn't be wasted. 😂

Fortunately my children also like pickles so we had a pickle party and talked about food contamination. 😂

The answer to my laughing question of "why did you assist on this mission" is inevitably because help was requested and it didn't seem like a dangerous idea. They have a lot of common sense and are just facilitating each other's autonomy where needed.

11/29/2025

What I thought: not allowing myself to talk about certain experiences and their associated emotions will make me doubt myself because sanity checks are a necessary part of some experiences.

What I am learning: over the years I have sought out the varied and lovely opinions of many people that I deeply respect and have spent a lot of time discussing things.

I understand myself.

The other day while driving I let my brain wander and it wandered back to a saying that I loved when I was a teenager. "When you dance with the devil, the devil don't change but the devil changes you."

I'm agnostic so for me it's always been more of a belief about who we choose to be and less about literal dancing.

Sometimes it's tempting to engage in negative behavior because it doesn't feel like the other people in the situation deserve better than the energy that they're bringing.

But being them doesn't change them. It changes you.

I can choose to be myself.
Or I can choose to be a reaction.

If I am myself it's joyful to hold myself accountable for my own behavior because my behavior is intentional and driven by who I am as a person.

If I am a reaction I will not enjoy having to look at my choices and ask myself if they reflect who I am or if they reflect someone that I do not like.

I can hear my own voice as I talk to my kids. "I understand they did that. It was their choice. But then you did that and it was your choice. I can understand why they did it, maybe they enjoy it. But why did you copy something you don't enjoy?

I'm growing stronger roots into myself each time I make these choices.

11/26/2025

Bloodwork.

I have taught my kids to always ask whatever questions pop into their heads because it's good practice to look around and think about what we know and don't know.

My kiddo wanted to know: what will the needle look like? What will it feel like? What is the stuff inside the tubes on the wall and why are they all different sizes and colors? Why do they need to take blood? Why does the blue rubber band help? Why from the arm and not the back of the hand?

Talking with me and asking questions and engaging in questions with the phlebotomist helped her be involved and feel at ease.

After I told her I like to rank things. And that bloodwork needles are mildly more ouchy than vaccines or injections but that I appreciate how they make it so there's only one needle. And how it ranks below a skinned knee, funny bone bump and stubbed toe and that her older sibling prefers bloodwork over the strep throat swab.

I remember feeling like a veterinarian's patient at various points in my life because medical providers were hesitant to talk to me because of my hearing loss and I was shy.

At some point I developed a very chatty patient persona because I enjoy being over-informed. Now I frequently end up knowing bits about peoples lives, where they got their amazing sweater, and how they personally rank the procedure they're performing on the "would you rather" scale. 😂

I'm teaching my kids this approach because it has improved the care I receive by quite a bit.

Sometimes it's "can you tell me a bit about why you're recommending this medication over another one?" Or "if this medication doesn't work what would the next option be?"

Sometimes the questions don't feel super important or like I need the information, but often I end up feeling like I have a much better understanding of my care as a result and it's always a good thing.

My four year old copies this with questions of her own that are adorable and give fascinating insights into how she sees the world.

11/25/2025

I'm not sure if anyone remembers my Oticon meltdown over ableist fear-mongering ads.

So. Part of why I was struggling was my mom had just started showing early signs of the vascular dementia that is now pretty advanced. At the time she did not want people to know. She has perfect hearing. Even today. I do not.

When I was a child my family made decisions based on what information they had available at the time, a lot of that information was heavily influenced by guilt trips and an oralism approach of trying to make the deaf kid hear and speak.

So being hit by all of those advertisements while not being able to afford any of the overpriced devices that insurance considers not necessary? The dementia risk posters and the "your child's brain won't develop" posters in an office that could not tell me how I might get them beyond fundraising?

Yeah.

Anyway. Go guilt trip the insurance companies Oticon. Go forth and pitch your dire necessary warnings. Or let my undeveloped brain develop its inevitable dementia in peace.

But. The house got its roof, the loan got paid off gradually over time as loans do. I did not fundraise for my own disability because I refuse to engage with something predatory and minimally helpful.

Fast forward.

I will absolutely 100% fundraise to help my husband with what he needs in order to experience accessibility of things that are otherwise inaccessible. But I'm taking the same energy with me while interacting with accessibility companies.

Accessibility company representatives that are not aware of charities, grants, rehabilitation services, programs, etc. etc. and that function primarily as a for-profit organization while not providing some sort of luxury spin?

Gross.

I can understand the fancy offroad wheelchairs and the exoskeleton tech being for-profit.

But telling someone that the only option for bringing someone home from the hospital is going to be $15k and implying that there are no other options and that the hospital won't allow the person home unless you pay up?

Gross. Very very gross. Exceedingly excessively gross.

No. I am not going to enthusiastically fundraise indiscriminately to hand other people's money over to your profit driven venture.

*Goes and buys a used ramp to return some of the money to someone's personal pocket instead*

11/24/2025

I think the key to recognizing that I don't write with AI is my impeccably poor grammar which is conversational and which follows my whims.. and my tendency to leave typos in place because phone keyboards suck. 😂

I was reading some content and was sort of glazing over and wondering if it was AI or not. And then I wondered if I ever sound like AI because I definitely get lost in flowery language. But then I thought a little harder and...

I think that to truly imitate human writing on the internet all the large language models need to type like their thumbs are hitting that crack on the screen protector and typing "tyoping" instead. And then they need to imitate being a mother of a four year old whose glasses are clearly covered in fingerprints. Don't fix it. Hit submit. (Sometimes because it's not immediately noticeable but sometimes because editing is annoying. Getting the cursor into the typo and re-typing it can be a whole thing. It's probably good enough. Right? Also definitely forget closing brackets. I opened a bracket. Am I supposed to remember to close it? Even programmers struggle with that. 😂

Anyway. Good morning! I have not seen my husband in three days because I am attempting to make my house wheelchair ready while also facilitating everything joyful for the kids while also working as much as possible.

Today I am going to dock my forehead to that spot between shoulder and clavicle for a good fifteen minutes to recharge.

11/23/2025

My heart.

These two have grown up knowing each other. I babysat him for a few months when he was tiny and his mama has become a dear friend of mine.

They're headed back to Ukraine where she has an education that she can use, with the hopes that they can improve their lives there in a way that has always been impossibly difficult here. His mama has been a citizen since she was young and he was born here.

I'm worried and sad and hopeful for the two of them and his sweet dad who is staying behind to send them what help he can.

11/20/2025

Skylark has not seen her papa for over a month now. She no longer asks for him which is both incredibly heartbreaking and a very good thing since it means she's no longer grieving their temporary separation.

Edi is slowly improving.

Life is chaotic and not ideal.

I feel like something is crushing my chest continuously and I am always anxious and sad.

The kids are doing fine. I'm still not able to work reliably because as things evolve the figuring out of stuff is complicated and takes time and follow-ups and it feels like whenever I think there is a new normal, things change.

I've started wearing my old Wait it Out bracelet again. 😂 It feels more intrinsically comforting than "this sucks and I have no other choice."

11/18/2025

Many people grow up in families where:

* manipulation is normalized

* guilt is a tool

* mind-reading replaces communication

* motive-accusation is how people influence each other

"If you don't do things the way I want them done I will invent a motive that sounds bad and assign it to you so that you will do what I want you to do. If you don't, then you're a bad person because of the negative motive I have invented in my head."

I like to talk to my kids about how it's important to consider if we are doing something for the assigned motives because it's an important part of self reflection.

But that we aren't responsible for giving a person what they want to prove that their guesses aren't real.

It's not essential to being a good person.

It doesn't earn trust or prove anything to the person that is trying to manipulate us. It just puts them in a position of having coercive control.

"I understand you feel that way. I'm sorry I can't help you with that. I have a reasonable boundary about what I am willing and able to do." Is a perfectly fine statement to make as long as it is from a place of truth and the best of intentions.

People that communicate that way will constantly use this tactic to get their way and it's inevitable that you will be a Very Bad Person.

I have found that it's wonderful and liberating to say "I understand you don't like me. You don't have to. I still think you're a lovely human being because *lists a few things* have a nice day!

It resets my mind from being stressed out to my proper equilibrium of the world being mostly good and people being mostly good even if the current interaction has been full of stress.

11/06/2025

I would like to run away from life as it currently is. To crack open a door and step out sideways into something else.

Instead I will pretend that this is what I have done. And this life is my respite.

When Edi was hospitalized for encephalitis and when I have been able to see my sweet mother as she's been slowly maturing into the dementia that makes up her final years.. I often have the thought that "this is awful but there will be a time in the future where I might very well give anything for this exact moment".

My story, for now, is that I am from some future of my own. And that I am visiting the moments that I will wish for, as hard as they are and as complicated as they are. Maybe not the future that exists in the next few years. But some future in a distant place where I will inevitably have the perspective that all of this is just f*ing beautiful and precious and lovely.

So as I am stressed out and grieving and sad and worried and confused, I am also taking delight in my children and in this lovely house and in my lovely friends and in the beauty of this world as it is.

And I wish for all the moments across all the years I have been alive where I did not do that. Because even though my life has had a lot of trauma and awfulness, it has also been wonderful and full of beauty.

I will grieve too, because part of life is grief and I can't pretend that it doesn't exist.

But I also need to love and enjoy and exist and breathe and kiss and hug and enjoy what is here right now, no matter what tomorrow might bring.

10/27/2025

I have brought up a pattern that I have noticed that needs to be discussed because it's the source of a lot of conflict.

She has been keeping things inside because she has difficulty sharing things that bother her. (Does she? I am not sure in the moment. But the conversation will go more smoothly if I focus on people having the responsibility to communicate about things that are not healthy or good for them.)

I am bothered because she tends to bring them up when I am trying to talk about a specific problem.

It is frustrating.

I'm direct and prefer to deal with problems as they come up and to agree on a solution and to hold each other accountable in a friendly way.

Community is about open communication and enthusiastically building the structure and agreements that help different people interact and manage life together. Without communication that can't really happen unless we are identical.

It becomes a very long conversation.

I listen to everything that everyone has done that bothers her. I talk about how to try and bring those things up with people. She talks about how people respond when she tries. I ask about how she responds when people bring up things with her.

I share my experience of bringing things up with her and I ask her what her experience is of bringing things up with me.

How should we respond when someone says something bothers them? How do we want people to respond when we tell them that something they do is distressing? How do we feel when people dismiss, make light, get annoyed with us because of everything we are doing that annoys them?

I ask her how I can integrate the changes she is asking of me into my life as it is, and if she can let me know when I'm not recognizing that I have dropped off on doing this.

Then I ask if we can please circle back to the conversation that I had tried having with her, because the way we had that conversation doesn't line up with what she wants for herself when she is frustrated and unhappy about something.

I agree with her that the things she wants for herself when she expresses frustration with something is reasonable for a person to want. People want that for themselves.

And I say that I am a people, too. It's a silly phrase I use with my kids.

We have the conversation again. It is quick and painless. This is the problem from my standpoint. This is the problem she is having making changes. This is the thing we will try. We can revisit and see if it causes unexpected problems because she has a life of her own that is important and things she is juggling and maybe we need to revisit how some things are done.

I tell her that I understand she is unhappy with how people communicate with her sometimes.

I tell her that I am pretty sure that those people are also not enjoying the way she tries to communicate sometimes because I didn't enjoy the conversation that she and I had. That I am enjoying it now, because we trodged past the dismissiveness and defensiveness and we're being productive and friendly but that most people do not get to experience what she and I are sharing. Which is persisting through the conflict and trying to find the point of connection and communication.

I am tired. My nerves have withdrawn from my extremities and have retreated from my shoulder blades to wrap themselves around my stomach and heart like a boa constrictor. Not because of rhe conversation. Just life as it is right now and all the chaos and worry and uncertainty that I am juggling for myself that is not something that the kids need to worry about. They get the simple explanations.

All the stuff we experience as adults in the adult-levels of life doesn't change what kids need. Which is support and help with learning how to navigate their own lives.

We need to communicate directly, effectively and efficiently in order to work together as a family right now.

Those people that she's using as the reason to participate poorly in her conversation with me... Are not in the conversation right now. I can't change how they handle conversations. That is a them-thing. We can go over what I need to improve. I can model listening and accountability and changes.

But I am also allowed to expect her to practice the skill that I am demonstrating. 😂

Imperfectly at first. Because it's always imperfect at first. But slowly.

Nurshable

12/08/2025

12/02/2025

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11/26/2025

11/25/2025

11/24/2025

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