Tuesday, May 28, 2013

Fishin' & Swimmin'

He's a natural. Evan caught as many fish as daddy (0) at our BBQ at Salem Pond! 
First time swimming was a little traumatic, but once Evan found his happy place kicking the side of the pool he was quite content. He always kicks the sides of the bathtub so it probably felt similar. video
video

Tuesday, May 21, 2013

Can Do

A few days ago one of my cousins asked me, "So what kinds of things is Evan doing now?" I much preferred this question over the ones I typically get on a developmental questionnaire such as, "Can your child _________?" to which I frequently circle "Not yet."

Here's some of the more recent tricks Evan has learned and can do:
  • Sticking out his tongue
  • Scratching at surfaces in front of him
  • Making at least two distinct consonant sounds
  • Signaling hunger without crying
  • Waking up without crying
  • Bringing objects to his mouth
  • Eating some solids (including a whole green bean...oops)
  • Laughing from his gut
  • Reaching for bubbles
  • Reaching for himself in the mirror
  • Sitting forward-facing in the stroller
For family home evening last night we each made family flags--pictures of things we thought best represented our family. Evan was asleep so he made his flag this morning. Besides the marker in his mouth, behind his ear, and on several of his fingers (and the couch and his pants), I'd say his first art project was a success.

  

Monday, May 13, 2013

The Half Empty Glass

My dad says my blog is depressing.
"Blogs are nice to read when they're happy but you write these sad stories with 'Pray for Baby Hadley' and then at the end you find out she's already dead."

My thought is, Well that's how the story ended...

The reality is, not all spina bifida stories end well. Based on several different (inconclusive) *studies:
  • Somewhere around 50% of fetuses diagnosed with spina bifida are aborted. 
  • Less than 5% succumb to spina bifida before birth and are stillborn. 
  • An estimated 25% of the people suffering from spina bifida die before their early adult years.


Early death is not a subject I tend to mention when discussing Evan's health but with the recent passing of my Grandpa Packard it's something that has been on my mind. It's one of many topics in the spina bifida network that I feel like people should know about. Then as I write I realize I have several contradicting opinions about the subject and no cohesive point to make. Even as I write this I don't know what I'm trying to say.

Is it that I'm worried about Evan dying early?
Is it that we're so blessed with modern medicine so Evan has a better chance of living long?
Is it that Evan seems so strong and normal I can't imagine him dying?
Is it that I'm in denial about the fact that Evan could die any day from spina bifida complications?

I don't know.

I think I just want people to be more aware of other people. I don't know everything about everyone--I don't even know everything about spina bifida--but I do know some things about this one condition and I want to share our story with as many people as I can.

One mother found out, at 20 weeks gestation, her daughter had spina bifida. The Harvard M.D.'s treating her said her daughter would be on life support and have too much fluid in her brain so the mother chose to abort the child. Now she sees so many miracle stories and wonders if she made the wrong decision. Now that she's more educated she says she wants to share her story. "If I can stop one termination it'll be worth it."
 
This makes me LIVID towards those doctors. Many many doctors are clueless regarding spina bifida and scare parents away from the  opportunity to raise these beautiful children. Awareness, people. Awareness.

Spina bifida can be life-threateningly scary, yes. Many children die too early because of complications from spina bifida. But people with spina bifida can also live happy, competent lives well into their 50's and 60's. Just be aware.


*Treatment has vastly improved since some of these studies and there is no definitive recent study regarding the life expectancy of people with spina bifida.

http://stephenmwagner.blogspot.com/2011/06/what-percentage-of-spina-bifida-kids.html
http://www.ncbi.nlm.nih.gov/pubmed/11359098
http://www.buzzle.com/articles/spina-bifida-life-expectancy.html

Wednesday, May 1, 2013

Honne and Tatemae

In Japanese there are words to describe the difference between what you really think and what you actually say: honne and tatemae. Honne is often unsaid, except with your closest friends. Tatemae is what society expects you to say, even if it's contrary to your beliefs. It's like when your grandma asks if you like the sweater she bought you for Christmas and you have to say yes even though it is neon orange, wool, and decked out with glittery pom poms.

In America we do the same thing--we just don't have words for it. But this idea is especially pertinent to me now as a mother. Most people who see my baby will tell me, "He's soooo cuuute!!" Although I don't see how anyone could not think my baby is the cutest ever, I sometimes wonder if they really mean it (honne) or if they're just saying it because it's expected (tatemae). Today I learned that if you really want an honest opinion about something, just ask a kid. Kids don't understand the social expectation for tatemae. They simply, and honestly, say what they think.

Today I went by Orem Elementary with Evan to visit the teachers I taught with last year. I passed by the Kindergarten and saw a few of my former students. ("Miss Jenna!!") Another kindergartener, who I didn't know, stopped me and asked:

Kindergartener: Who are you?
Me: I'm Jenna.
Kindergartener: Whose mom are you?
Me: I'm Evan's mom. See, this is my baby, Evan.
Kindergartener: He has a big head. Why does he have a big head?
Me: (awkward laugh...) Yeah, he does. His head is big because he's a little sick...


The conversation went on for a while with the kid asking lots of questions. Why is he sick? What is that? What does he do with it? Why is he sucking on that? Can he talk? Fortunately, it ended better than it started:

Kindergartener: So is he just like any other baby?
Me: Yeah, he is.