Category Archives: preemies

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)

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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.

Day 12 – 40 days of writing – managing vulnerability

Vulnerable

I am feeling so very vulnerable.


vulnerable
/ˈvʌlnərəbəl/
adjective 
1. capable of being physically or emotionally wounded or hurt
2. open to temptation, persuasion, censure, etc
3. liable or exposed to disease, disaster, etc



Let me be very clear. I don’t do vulnerable. Rather, I don’t like to do vulnerable myself. Support vulnerable I am pretty good at. 

This is vulnerable:



I am not that.

But yet, I feel so exposed.

I suppose there is this thing about letting go. My whole life I have loved fiercely, family, friends, the underserved among so many other things. And there is something, with a couple of rare exceptions, that is very one sided. In most of the cases (outside of family) love not expected to be reciprocated. In terms of friends; I can love them as much as I need to but since I know how variances are in the complexities of human relationships, I haven’t really expected or even needed them to love me back.

Until now, I suppose.

I received an email from someone I think is wonderful and call a very dear friend and in her email she said she had called me a best friend. Oh, I was struck by that. I hadn’t known that she had classified me in that category, and I was deeply, deeply touched and very grateful. I am better at the subtleties of friendships with men, and not so good at them with a grand preponderance of women.

But, it feels so vulnerable to allow oneself to be loved in this kind of situation. At least, for me, in terms of relationships outside of marriage and genetics.

As an aside, I made a variation of this Ayurvedic Dal recipe, it is a family favorite that is rich and complex in flavor but so hearty and filling. I even quadrupled the basic recipe (only one can of coconut soup, and some other changes). The way the currants plump up and complement the curry power is like a bit of food heaven.

Normally, I make brown rice but for some reason I bought some jasmine rice. In an attempt to make rice Ecuadorean style I followed the way Carloti (our live in maid/nanny) showed me…something like this recipe, but letting it sit longer so you get a crispy bottom.

There is so much comfort in comfort food.

Preemies

Squink was only in the NICU for about 11 days.

Those days were really hard, but they were only 11 days.

Malcom had been there for months, other babies were looking at staying there for months. I have always felt like Squinks’ 11 days, in comparison, were nothing, not even worth calling him a preemie… at least out loud to other people. Least they say something like “he was only there for 11 days, that is nothing”.

Yeah, I know it is an internal struggle… no one has ever said anything about my claim to be a mother of a preemie as not being valid. Even the mommies of babies that had been there for a while never say that… but there is something that hangs out there in the air like a nasty noxious fume of a cloud that says “but your baby was only there for 11 days”.

I can’t see a picture of a baby in an incubator without tears welling up in my eyes, my heart feeling a little tighter, my brain getting muddled in recalling those days. those 11 days.

o, I have been trying to read this wonderful blog called sweet|salty for a while… she captures those feeling of sitting in the “pump house”, the vocabulary you have to learn… but the truth is that every time I try to read her wonderfully put together story on this journey… but my heart gets tight, my eyes water, and I have to stop… only because there is a certain pain in recollecting those days when we were asked if we wanted last rights done, or as he was semi-intubated, as he was moved from middle care to the NICU… I don’t know how parent’s survive it, those days are bleak, hard, filled with beeps and dark hospital wards with tons of itty bitty bodies in different sizes with their own corresponding beeps… where you notice anyone else wearing that color coded hospital bracelet that means someone they love is a little baby in the NICU. Faces that imprint in your memory and have no names, where strangers provided little reassurances, and you are so grateful, where setbacks that others have give you almost as much pain as if it were your own partly because you are so glad it isn’t you but know that there is no guarantee you won’t be next….

I dunno, read her words if you want to know what it is like to have a premature baby in NICU, even though her twins will be there for 3 months, she is describing exactly what those 11 days were for me. At least what I have managed to read so far, before my eyes well with tears and my heart gets that tight feeling and I have to stop.

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