Category Archives: family

little scraps of wisdom

Before I dig in – happy 11th anniversary to me on WordPress!

I started this blog because I needed one that provided password protection as I worked through something in which I as working with quite a few mean, rich, white, ladies. I never thought I would migrate my very first blog over here, but I did – because of my mom… which bring us to today.

The world, it just keeps spinning, doesn’t it?!?!?!

https://commons.wikimedia.org/wiki/File:Nathaniel_Dance_-_The_Pybus_family_-_Google_Art_Project.jpg Nathaniel Dance - The Pybus family
Nathaniel Dance – The Pybus family

So, for today’s installment of “my mothers reality is just not my own, but I keep learning from her in ways she might probably resent” –

My mother, with a solid gold heart posted this to her social media;

Which is true, absolutely true – with one exception. She is living in a home belonging to someone else (other than her) home and I don’t feel like this applies right now – though in any other place where she has had a piece of the pie this is absolutely true, and I mean it is absolutely true.

And so in my failing wisdom in thinking that she could acknowledge this I commented something along the lines of “if you lived in your own house, it would be”. I will admit that I was probably guilty of being too strait a shooter in this case, I thought she would get that this was true – based on her own comments to me about where she is living.

Anywho…

With in minutes I got one of her texts (I am starting to think that she refuses to call and face shit because she loves the anonymity of texting – you can be as big an asshole as you want without having to visually or audibly deal with the reactions… and  I get it – I am a coward too).

I am the blue –

 

So yeah, I’m not innocent in the exchange.  But, I loved the idea behind the social media post (which is the primary way she talks to me, she really only emails my husband – and rarely calls anyone – which I get, I hate talking on the phone too)….

**blargh**

 

Mom’s – definitely can’t live without them… but (and it is a big BUT) it is what happens after that, which the real miracle… right?

 

 “I believe that what we become depends on what our fathers teach us at odd moments, when they aren’t trying to teach us. We are formed by little scraps of wisdom.”
~ Umberto Eco, Foucault’s Pendulum

 

like certain portions of the anatomy – 302/366 (catch up)

What was the best conversation I had today in the last twenty-four hours?

I think it was with my son, about our experience listening to the audiobook; The Immortal Life of Henrietta Lacks by Rebecca Skloot.

What a magnificent audiobook, it is a fabulous story. Science made real, and personal.. the way it should be. The book made me cry, it made me laugh, smile… it was profound, and light. It was family and academic.

I recommend the audiobook to anyone. I got mine through the library.

PS – I am now only twelve days behind in these posts!

 

“Conversation, like certain portions of the anatomy, always runs more smoothly when lubricated.”
~ Marquis de Sade

 

 

Messages from my mirror

The face is the mirror of the mind, and eyes without speaking confess the secrets of the heart.
~St. Jerome  

Today I scheduled a follow up eye appointment for October.

As I opened up my calendar I realized that the four months would land on the day before I had my surgery, which was when my eye problems started.

In the eight months since my life was spared and my body was torn apart in order to do that… a lot has happened.

One of the things that I find most striking is that my eyes have changed. And I have been trying to figure out what it is that I have noticed.

I am not sure when I started to think my eyes looked different to me, but I recall wondering if somehow my irises had become lighter or cloudier in color. Cataracts at my age?

The crux is that they don’t look happy to me, they looked pained, tired, and perhaps even scared.

I don’t know that I am any of those things, but I am a very different person than I was in 2014 B.D.

That B.D. is Before Diagnosis.

This process has been hard, but the hardest part was learning to stand up for myself. Standing up to a mother and aunt that I know love me, but who felt that age gave them some sort of prize that included tearing me down… I am sure that is (was) not their intent… but as they threw things at me that I would have previously have bowed my head to and ignored but in the middle of my fight to feel whole again seemed unduly cruel coming from them. As I said, I am sure they did not mean it, but they still hurt me very deeply on a level that a doctor could not touch.

I think, perhaps, that is part of the cloudiness that I see in my eyes.

It is also navigating my health after a pretty invasive surgery, the unwanted weight gain, the change in shape, the pain, the aches… the health of my eyes included.

They are better now though, the scars left on them through repeated injury and a misdiagnosis are healing, almost gone. The burden of the change of lifestyle for them is permanent… eye drops for life, they said. Keep them moist, they said. I will, I reply.

But when I got home from my appointment today, I looked in the mirror and still saw that certain kind of cloudiness, and I hoped it was not permanent.

Then there is this.

“Behind these eyes there is a girl trapped within her pain – a girl feeling all the emotions of anger and sadness. She’s fighting for a way out.”
~ Chimnese Davids

TEDx yzpdqbil*

I have to admit, I am currently a little obsessed with TED talks.




It all started with this one talk – I think I saw it sometime in the fall of 2008;

https://embed-ssl.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html


I was floored, and moved, and thought “what a great way to put things out there”.

And since this was new I kind of waited to see what it would bring. I made my mother watch it. I sent it to my friends, and have fondly referred to the talk and my reaction to it ever since.

I was not a Ted-aholic, though. I would only reach out to Ted videos when I referred to them.

But something changed.

As I was preparing to host a movie screening with panel discussion, and I could not find anyone willing to serve as master of ceremonies, I realized that the job would fall to me.

So, I began watching them to see what makes for a good speaker, what are things that are compelling, what things did I like.

I even made Squink watch them while he would take a bath, the bio-luminescence ones are super cool!

I think I am a mediocre speaker. I have some strengths, but plenty of weaknesses.

But after the event, I had the idea of a themed series of talks, something like the Ted talks I had been watching for cues.

It is possible:  https://www.ted.com/participate/organize-a-local-tedx-event

But I think the one for Phoenix is taken.

And they frown upon “themed” events.

And when I thought about it some more, I saw so many possibilities and had to chuckle at the notion that each one had at least one “rule violation”.

I thought about one dealing with the many faces of cancer; from the physicians that find it, the pathologists that decipher it, the oncologists that treat it, the people who have endured it, the families of those who suffered it, the nurses who care for them, the scientists researching it.

It would be good, but it is a theme and violates the programming rules.

Then I thought about what it was like growing up as a third culture kid, and how cool it would be to get other people who grew up that way. I think my friend Doralice would have some wonderful insights, as would my friend Sparrow, and my friends Jeff and Erica. I think it would be interesting to give voice to that kind of experience. It is a bit unusual.

I have met so many interesting people, I would love to have an event to hear them talk… the Jivaro indian that had to flee his tribe because he wouldn’t convert, the people who started putumayo, the circus people, the rodeo folks, singers, entrepreneurs of the ridiculous, those off grid (the hardest to organize), photographers, movie stars, cartoonists in the golden era, explorers, survivors, hedonists, narcissists, and so on.

That got me to thinking about what would happened if I was told I had to give a Ted talk…  kind of talk could I give? what would it be about?

My ideas for Ted events is large…. but the list of things I feel I would be qualified to talk about is pretty non-existent.

I suppose I could talk about how being diagnosed with cancer was life changing in some spectacularly subtle ways… or what it was like being born to a bullfighter father and an explorer mother, though that is really their stories. About being a child of divorce (booooooring).  What it was like managing a high stress pregnancy, most of which was spent on bed rest (gag me).

At this point in my life, I think I would talk about why I think vaccines are important, from a theoretical view, and cultural view, and prevention view, a mothers view, a survivors view,

What would your Ted talk be about?









*stands for examine your zipper, pretty darn quick, before I look (a childhood phrase)

A year in my life

A year ago, I had sent my son off to Europe and missed him terribly.

I think it was the Starbucks app of the week that was a picture a day app. I downloaded it, because;
1) it was free
2) I was thinking about documenting how much I missed my son

So, I took the selfie… and time flowed and I stuck to it and yesterday I got a notice that I had taken 365 photos.

One year, one insane year.

A son sent abroad at a very young age and being diagnosed with cancer. Not really sure which was hardest at the inception.

I missed my son terribly and was so happy when I reunited with him.

And hearing you have cancer sucks, sucks, sucks… and somehow it infiltrates everything.

But I missed my son and that was the hardest thing ever, and yes.. in a way, it was harder than being told one has cancer.

But the cancer things has its own craziness, craziness that makes everything outside the norm seem so much scarier.

So here is that one year of selfies, and as I sit here trying to figure out what all to tell my oncologist when I call him tomorrow, I think I look so much happier now than I did when I missed my son so much!

https://www.flickr.com/apps/video/stewart.swf

Invincible summers and calculated acts of kindness

“My dear,
In the midst of hate, I found there was, within me, an invincible love.
In the midst of tears, I found there was, within me, an invincible smile.
In the midst of chaos, I found there was, within me, an invincible calm.
I realized, through it all, that…
In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.

~ Albert Camus


It was late on December 20th, 2014 and I was still recovering from my surgery.   I read an email from my friend Gail in which she asked if the Junior League of Phoenix (JLP) would be interested in hosting a movie screening. Gail works at The Arizona Partnership for Immunization.


It was this movie screening:





I watched the trailer.

I called her to talk on the phone.

I pretty much told her that I didn’t know but I would find a way.  We talked about how I could manage this in my capacity as the member training committee chair and we came up with a plan. The next morning I sent out some emails to my Team Leader in the Junior League and my co-chair. Both were supportive.  Gail and I discussed venues and what options we had. We decided that my cousin, who is Lead pastor at Scottsdale First Church of the Nazarene, would be a good person to approach. So an email went to him. I received immediate replies and all were supportive. 

Here I am 2 months later. The JLP team lead I serve under, has allowed for this to become a bigger deal within the JLP.  More partnerships have developed and are included below.

Our goal is to provide one large movie screening with a panel that is targeting about 200 viewers. 

If you are local – please save the date:

Date:
Thursday, April 9th 2015

Location:
Scottsdale First Church of the Nazarene
2340 N Hayden Rd, Scottsdale, AZ 85257

Time:
 5:30 – 9:00 pm / Movie starts at approx 6:30

Tentative Agenda:
Sign in opens with a meet and greet: 5:30
Movie and topic is introduced and screened 6:30 
(movie is 80 minutes long)
Panel discussion at end of film
closing meet and greet


Community Partners:


I am back – with some Calculated Acts Of Kindness (COAK)

Yes, I decided to  come back here. I figured out how to un-subcribe people and did so…

I did that because this chronicles my life for the last 10 years.. and a lot has happened.

But those ten yea

thank you deviantart

rs all had my Squink in them. And even when I did not mention him, it happened around him.

But it also feels like a new beginning and how wonderful that it coincides with the first day of Lent.

So, I am following after Kelli at AfricanKelli with a commitment to Calculated Acts of Kindness…

I will post updates on:

Flickr Pool

Instagram

Facebook

and of course HERE (and on my other site)!!!!

What a wonderful way to start

Peek-A-Boo – I can’t seeeeeeeeee you…..

Oh my, how many times did I play that game as a new mother…. There were countless delights in the delight and giggles of my newborn son. I loved watching my son take his turn,  cover his eyes, and then swiftly moving his hands away. Staring at me, wide eyed, with the expression of “Mom, I was here the whole time”, laughing as I pretended that I could not see him.
The idea is to learn object permanence.
My brother, when he was young, used to close his eyes when he wanted to be alone (no matter how many people were in the room with him). He was completely convinced (I believe) that if he could not see us, that we were no where near him.
People were and are always present to each other. This is true, even if you adopt some sort of frantic philosophy in which you would argue that everything is not real. That my brother was, in fact, alone and/or there was no one in front of my son when he had his eyes covered.
I thought about these times after I read this article  the other day.
I find humans to be fascinating, we are social beings. There must be some kind of thinking that has an application to technology and how we tend to act towards each other. I mean, why do we act so terribly when we can’t see the face of the other… trolls, for example, thrive on this, I would argue that they depend on it.
I’ve been told that gossip serves a crucial social role for us humans. Gossip moderates our social behaviour… and I think that it applies to this in a certain context. So, imagine if you will, how easy it would be to scold someone you know via text or email if you did not have to see them. One would put their scorn into a few words and be as clear, concise and I might argue brutal… after all we want to make sure the point gets across.
This message puts the other end of the social interaction on the defensive. It is more likely than not, that a series of texts or emails get exchanged with a defensive end and an aggressive end. For delicate social relationships, this is probably not the best way to go about communicating.
This is so hard for people like me who hate talking on the phone. I prefer a text, or an email. I tend to not even want to talk to people. I am an introvert.
This is a modern day reliance that tends to be abused. When I sit on a board or committee, I tend to default to this. I have noticed that feelings get hurt so much more quickly over text or email. I know that I have been on the hurt end. I know I have also been on the giving end…. though not usually in giving of a complaint, but in pursuing a conversation.
So, I ponder the reliance I myself have on technology to communicate my feelings. I am trying to move away from it. Of course, I have this (these, actually) blog(s), they are a public written communication. And my blog is also subject to vitriol and complaint.
Text, email, and even blogs are devoid of any kind of social interaction. When we speak we can at the very least know that the subtle intonations are being heard (even if misheard). When we write, sarcasm doesn’t usually translate. When we speak, there is a possibility we can react to body language. When we text, we don’t.
So much is inferred through sight and hearing. I can see if the person I am speaking to has outward signs of having a bad day. I can hear if someone is making a joke. And though people miss these cues often when in person or over the phone, we are less likely to miss them than if we text.
In the days of “The FaceBook”, Twitter, email, text, instant message… we have lost the physical interface.
If you consider things like FacebookTwitter, or even blogs you can see  how there is a modicum of backlash. Will we learn how to do this better? 
When will learn to be more gentle with one another? 

I hate this blog

Not really…

I actually love this place. I am just not happy here right now.

I have written in it for over 10 years.

It chronicled my pregnancy and the birth of Squink. It watched the early years of his growth and my trying to figure out how to move it out of being a mommy blog into something more.

There was the year I tried to love poetry, still don’t.

There was a feeble attempt at food blogging.

At the forefront, though, has always been something that I would call my story.

The funny thing is that it took my cancer diagnoses to change that.

At one point this blog became about other people. 

It took a triple lecture from my mother in text, email and phone call form to change the way I look at this place.

The lecture was about how I had offended my aunt because I hadn’t thanked her enough in these pages.

I was told that it had been explained and that she understood, but three messages/lectures about one incident about how I had failed here are hard for me to recover from, at least at this point,  Especially since I know they still read this.

I try to write something but each time I ask myself who is going to get offended this time.  I can’t do it, I have 68 drafts sitting in my folder waiting to be published or worked on. This place was not about making other people happy, it was supposed to be a place to write. Making other people happy is not what I wanted this place to be about. I can’t do it that way. Since I can’t seem to get past that and the sense that somehow what I write is or can be rude or offensive or even (at best) insensitive… 

Oh, I was just trying to work out my gratitude for how many people helped me… nothing more… The thing is…, I am not mad… I feel like I am just not good enough to do this anymore.

This situation (above) happened right on the tail of a post in which I chose not to include my husband, mainly to protect him and to make it about my son and I (yes, that was selfish)… he was hurt and having to manage his hurt feelings was hard, but I deserved it. In the case of my husband, I was wrong… I should have asked if I could include him and didn’t… . but in the other I was not.

This was supposed to be my journal, my thoughts, my stories, my ideas… and now they are terrified of hurting someone else’s feelings, having to deal with more emotional upheaval, being at the end to more lectures holding my behavior to a certain standard, more hurt feelings (my own included). 

But what can I do?

I hated the year I only wrote about poems, it was so anonymous and sterile. but it seems that is the only thing I can try to do anymore. I love my family too much to risk it.

I met some really wonderful people through this blog. 

I miss that part of this… 

However, in the interest that no one gets hurt by reading this blog, I am keeping this proverbial mouth (blog) shut. At least for now.


“You should try not to talk so much, friend. You’ll sound far less stupid that way.  ~ Breeze”
~ Brandon Sanderson, Mistborn: The Final Empire

For the children’s sake

Today I went to a luncheon that was started by a family that lost their son/brother to the ravages of addiction.

As I listened to the mother and sisters make impassioned pleas for support, I thought about how I would feel if I lost my son… not just to addiction, but to anything. Considering that I was close enough to that when he was a new born, I felt the mothers anguish. Then as I thought about how the young man was only in his mid twenties, I wondered how that must feel if it happened now or ten years from now, or even twenty years from now… painful is what I could answer.

Following that, I began to consider what my parents must have felt when I called to give them my news.

I started to feel a little sick to my stomach. Just in anguish.

I thought about my mothers gasp when I called her, and my fathers silence when I called him.  I noticed them, but only slightly… I was so wrapped up in my own extremely feeble attempts to try and manage the news.

To call them and share the news that “I have cancer” was hard. And to now be able to put myself on their imaginary end of the phone line was pretty horrifying…

What would I do if Squink called me with such news… not a question… the mere thought brings me stomach pain, a heavy heart, my breath stuck in my throat.

Our children are not supposed to die, they are not supposed to get seriously ill, to suffer.

Life is pretty ridiculous, and I say that because in spite of everything,  it all results in death, and we humans become so attached to each other, that the death part becomes un-natural to us in a way.

And I am not trying to be-little it, I am more trying to wrap my head around it.

People we love get sick (be it cancer, addiction, heart disease, depression, leprosy…) and they die… and we have to deal with the mortality of the ones we love… and the pressure of things when it is your children who are going through the process, well it must be intense and I don’t think it ever gets any easier.

When we were asked if we wanted Squink to be given last rights, that was a tough moment. We understood that he was not a healthy baby, that he could die…. THAT was intense. Schatzy and I went home and prayed, we felt helpless and when that happens you turn those feelings over, they become outside of self.

So that is all I can say, getting that kind of news must be devastating, as devastating as it is to get and be aware of the news about yourself, but somehow I just know that no matter what his age, I would take the news from him far harder than I think I might if the news were about myself… and neither would be easy.