Rare Disease Day 2019: when you’re reminded it’s rare

In January, we got phone call from Micah’s nutritionist. She announced that the company that makes Micah’s medical formula was discontinuing the product, but she would send us some samples of another option. (There are only a few formula options for Micah’s disorder.) These samples would be similar to the old powder formula that he used as a baby.

It felt like the air was sucked out of the room. I was back in our apartment kitchen, looking at an immersion blender and a collection of small bottles as I mixed formula and measured each feeding into separate bottles. This was my nightly routine once we had tucked Micah in bed. Then I snuck away for a little bit of sleep before the alarm went off, waking me up to feed him again. Occasionally I would wake unexpectedly and panic for a few moments. Was it time to feed him? Had I already fed him? Had I overslept the alarm?

Tracing Marriage Through the Bible

If you start talking about marriage in the Bible, most people are going to pull out Ephesians 5. The Ephesians 5 passage is beautiful and applicable; but it is not the first time marriage is discussed, nor is it the only passage that talks about marriage.

Let’s start at the beginning and work our way through the story. It is the same story that Paul is actually retelling in Ephesians 5- because God is always telling a cohesive story throughout Scripture- but I think we miss that because we rarely look at marriage anywhere else.

Right after God makes woman as man’s “ezer,” He proclaims the story of marriage. “Therefore a man shall leave his father and his mother and hold fast to his wife, and they shall become one flesh” (Genesis 2:24). This is fascinating to me because Adam didn’t have a mother or a father. But Moses wrote this hundreds of years after it happened in a context where all men getting married did have a mother and father. (Do a little digging into patriarchal cultures. Women were just absorbed into their husband’s family.) Instead of a woman losing all that she could be, the man was supposed to leave what he had and hold fast to her.

How Marriage Works for Us

Monday night was date night. Our babysitter came over and the boys practically shoved us out the door. We jumped in the truck and headed to a restaurant that we reserve for date nights. It is not conducive for four small children; at least, not in our opinion. We talked about a little of everything over our Japanese food: dissertations, podcast interviews, homeschooling. Then we went to Lowe’s. Because every good date night ends at Lowe’s.

(Honestly, I haven’t figured out if that’s because we’re getting old or because we live in a small town. Either way, I usually come home with another houseplant so I don’t question the decision too much.)

When we were almost home, Justin mentioned that he really liked me. (Gag alert: we often have these conversations about being each other’s favorite person.) Of course, I started thinking about why our marriage works.

Short answer- Jesus, duh.

Getting A Vision

My office belongings are currently in our front hallway. There are stacks of books and Justin’s bag of basketballs. There’s a rolled-up rug draped on top of the speaker, artwork leaning against the wall and shelves stacked in the corner. My notebooks and mugs of pens and books that I keep close lay neatly in the out-grown cosleeper.

We’ve moved the three older boys into their new room. Their new curtains will be here Thursday and we’ll hang them. I’m slowing pulling out the last of the things that won’t be staying in their new room. I’ve cleared a corner in the new office to assemble the crib one last time. I’ve got the measurements for the standing desk to go in the opposite corner.

I have a vision for both of these rooms. I want spaces that allow our family to flourish and thrive in our home. A space for the boys to grow. A space for Luke to sleep comfortably, undisturbed. A space for me to work in a somewhat organized fashion. (I can’t tell you how much I’ve missed my desk the past few weeks.)

Celebrating Ten Years of Us

Justin and I are celebrating our ten year anniversary tomorrow. I distinctly remember writing our seven year anniversary post and it feels like the years are just flying by, regardless of how hard and slow they seem day by day sometimes.

One of my favorite memories of marriage this year is from when I was in labor with Luke. I was sitting on the hospital bed, holding a popsicle during a contraction, and he quietly walked over and took the popsicle from me. When I mentioned this to him several months later, he didn’t even remember doing it. But he knew me (this was baby #4 after all) and he was paying attention.

Raising Boys in a Sex Scandal Society

Recently, there has been a long string of sex scandals or allegations revealed by the media: Harvey Weinstein, Roy Moore, Matt Lauer. The hashtag #metoo has reaffirmed that sexual assault and misconduct are common. The same story is repeated over and over. Men don’t respect women. Men use women. Men objectify women. Thankfully, not all men. There are few things better than good men and I know men that I would trust with my life or with the care of my children. But that kind of character can’t be assumed, even in the church.

Even IF we didn’t see the same behavior in the church, I find the church has little space to speak life to women who have been abused or violated or shamed because the church is largely responsible for electing a president who thinks this behavior is perfectly acceptable. And he said so long before he was sworn in. We ruined our credibility on the subject.

This is largely why feminism exists. If you think feminism is the ultimate evil, check yourself (and I’m not endorsing current-day feminism). I have seen grown men comment publicly on the internet that it is no big deal to grope a strange woman, that she should feel honored that she’s attractive. No one actually believes that garbage, right? If women were treated with dignity and respect, as people with something important to contribute, there would never have been a need for feminism.