Friday, October 31, 2014

Crescent City

Once upon a time my husband embarked on a job hunt. This hunt crossed states and required a move-in with the in-laws in California. It has involved hours of online searching, tests, applications, networking. The lady at the local post office now knows us by name and prays for us (probably because we take up so much of her time by mailing applications each week). Literally, hundreds of applications have gone into this hunt. I've applied for jobs for Isaiah. He's applied for jobs for himself. Friends have suggested jobs for him.

He still doesn't have a new job.

But that's why I'm writing this post now. Let it be known that my feelings are not conditional.

My husband is incredible. When Isaiah lost his job he showed so much strength and initiative. He instantly started searching for something new to make sure our family's financial needs would be met. He was willing to do any job that would meet our needs. As soon as we saw that wasn't going to happen in Utah, he found another solution. He willingly accepted a position in California that would take us to a location we never wanted to be in, working hours he would never have chosen for himself, and paying far below what we feel he deserves with his education and experience. After the first two days of work he said he felt like a slave and wanted to quit. He continued work and quickly became noticed by the head of the company as someone important. He advanced to a supervisor position (and a pay raise) and has excelled in his job, even making improvements in some of their systems and record-keeping. Even though it's not where he wants to work forever, he is putting 100% of his efforts into doing his best. He is so deserving of something better suited to his education and interests.

In the meantime, the applications have continued to be sent in. He's now had about 7 or 8 interviews around the state, ranging from Kern County to Avenal to Crescent City. He and I took advantage of his time off to go to Crescent City and made a little road trip out of it. We left Evan with the family and spent the better part of two days driving nearly to the Oregon border and back for a half hour interview. Let me tell you--Crescent City is an interesting place. (It's probably for the best that he did not get that job.) It's got ocean/lighthouses on one side and redwood forests on the other. It is isolated from anything else for an hour and a half in all directions. For that reason it has everything you need, but nothing more. (It has a Wal-Mart but no shopping mall.) We enjoyed the drive through the redwood forests and made a stop at one of the landmarks along the way--the Grandfather Tree!

I am hopeful that a new job opportunity will come our way when the timing is right and the location is where we need to be. Reluctantly I'll admit that our time here in Esparto has been full of learning and growth. Learning things I never wanted to know and growing in ways I never wanted to grow. But all of this has been for the better and I'm grateful for my husband who has strengthened our family along the way.

Friday, October 17, 2014


Just before my birthday in September Evan decided he knew how to talk.

I've been "Dada" for so long--and I was fine with that--but let me tell you, it's nice to hear your own name from your child eventually.

From that point on he's rapidly increased his verbal vocabulary. It's crazy how all this pent-up knowledge from the past two years is finally showing up now. Words are popping out of our child left and right. Words that I know he knows, but that he's never said before.

For a while when he started talking he was saying new words but omitting the first consonant sound (which apparently is not normal in language acquisition--leave it to Evan to be different again). He also stopped doing all of the signs that he knew, swapping them for words. The problem was that his words were not understandable without signs. Even though he was verbalizing I didn't feel like I knew what he was saying any better than before. Just this last week he's improved so much with clarity and initial consonant sounds. Some of his favorite things to say are "Bye Dada," "Go Maya," "Mackey Mouse" (Mickey), and the ever-popular "cat."

Some of his most surprising words came on our walk today. We've done this walk a hundred times: First, to the mailbox; next, around the block; and finally, sit on the grass outside the house and watch the trucks. When we got to the mailbox I asked him, "Which one is ours?" Although he usually just points, today he said "twelve!" which is completely correct! I've said the word over and over so I'm not surprised he knows it, but it was such a surprise to hear him say it. Then I turned to go back to the house and he said "bock!" (block). I thought, of course--we're supposed to walk around the block first. At home I was about to walk straight inside but he said "gass" (grass). My child is a genius.

Monday, October 13, 2014

Sacramento Museums

Recently our little family took advantage of some free kid-friendly events in Sacramento. The first was Little Buckaroos Days at the Crocker Art Museum. It was part of Gold Rush Days (whatever that is). There were a few crafts like "make a cowboy hat" set up on the top floor, a wild west photo booth on the bottom floor, and food tasting, games, and a petting zoo outside. We spent a little bit of time enjoying the art work since we could walk anywhere around the museum. There were some artifacts from 2000-3000 BC which were pretty cool. There were also giant landscapes of Yosemite and other local areas from way back when there was less civilization. The must-see for the day was the petting zoo. For the most part, Evan loves animals...until they get anywhere near him or make surprising noises. I was excited to see how he'd respond. The line was long and sunny (with a semi-entertaining guitar-playing folk singer to keep us distracted), and part of the line was along the petting zoo fence so Evan had ample time to get used to the animals before we went in. Inside the gate was a little scary for him, but he eventually touched the goats and sheep so I'd call it a success.

More cowbell!

The second event was through the Smithsonian free museum day. I was wanting to go to the a California State Railroad Museum for Evan's birthday, but it worked out much better to go a couple weeks earlier for free, of course. The museum had 3 main parts: 1) Photography from the building of the railroad, 2) Model trains and toy trains, and 3) Real trains. Naturally Evan was terrified of the moving toy trains--he screamed every time Thomas passed him around the track--and loved the giant trains. He's learning to say "too too!" when he hears a train whistle. We went inside a few different cars like a dining car, mail car, sleeping quarters, and the engine room. One of the cars had noise and actually shook sideways back and forth so we got a sense of what it would really be like on the moving train.

Saturday, October 4, 2014


You know, Spina Bifida? You know that thing Evan has that changed my life in an instant?

I'm part of a group on Facebook called Spina Bifida Fetal Surgery. It consists of mamas and dadas whose children have spina bifida, and most of whom had fetal surgery. Like me. Over the past few days my Facebook feed has just exploded with spina bifida awareness picture, stories, quotes, memes, statistics, complaints, and blog posts. I feel so overwhelmed with all the information. I think, "Oh, I need to like that," and "Yeah, I feel the same way," and "I've got to share that," and "I wish I thought to post my feelings in that way."

How can I best spread awareness? What do I really want people to be aware of anyway? Why does it matter that everyone else is aware? They don't live with spina bifida so why should they care?

Here's why you should care.

Something like 64% of pregnancies with spina bifida are terminated. About 64% of kids like Evan are killed.

Doctors, OBs, other moms who terminated, and false information on the internet tell uninformed parents that people with spina bifida will have a "poor quality of life." They will not be "normal." They will need several painful surgeries. They will have brain damage.

The parents can't imagine causing their child to live such a "terrible" life. So they end their pregnancy and end their child's life.

Does this look like a poor quality of life to you? (You better say no.)

Is our life always easy?

NO! But guess what? It's not easy for anyone--with or without spina bifida. 

Are there challenges we have specific to spina bifida? 

YES! Evan had brain surgery at 3 months old. That's kinda scary. But guess what? I have two cousins who had heart surgery as infants. That's scary too. 

What does spina bifida really look like? That's hard to answer. Some people are cathed and get frequent UTIs. Evan is not currently cathed and has had zero UTIs. Some people use wheelchairs, some walkers, some orthotics, some nothing. Evan uses a walker and has a goal to take independent steps soon. Some people have shunt surgery. Evan did. Many of his friends didn't. Most people have developmental delays. Evan sure does. Delays in gross motor, fine motor, speech, cognitive, social/emotional... (am I missing any areas?) Everyone avoids latex in an effort to prevent a latex allergy which is common to people with spina bifida. Many adults can live independently. Some get married and have children. Evan isn't there yet. :) 

So what does spina bifida look like? What would I want my newly diagnosed, terrified mamas to know? I want them to know that I am happy. And Evan is happy. And people who meet Evan get happy. And I guess Evan isn't "normal" but hey, who is? Most of the time I feel like life is normal. Going to therapy is normal. Bringing along the golden walker is normal. Understanding medical terms like hydrocephalus and heterotopia, and abbreviations like SMO/AFO is normal. Discussing bowel management programs with strangers online is normal. And quality of life? It's what you make of it and ours is amazing.

My Facebook friends have really been showing me over the past few days what spina bifida looks like. Search #embracethebif on Facebook to see "This is what spina bifida looks like." For me, this is what spina bifida looks like. We embrace the "bif"--spina bifida.