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?

Pick the Adventure Your 80-year-old Self Will Be Proud Of

I’ve talked about getting my nose pierced all year.  Actually-hold that-in spring of 2017 I went to a homeschool conference with a friend and we had a long conversation about my getting my nose pierced. Another friend and I tossed the idea around at the beginning of the year because she wanted to pierce her ear cartilage. But I let it drop even though I’ve wanted to do this for three or four years.

I hadn’t thought about it seriously in months. The day after Christmas I walked by the mirror while I was picking up the bedroom and “you should go pierce your nose” seemed to be written in all-caps on the mirror. I stood and stared at my reflection in the mirror and, for some reason, felt certain that if I did not go pierce my nose then, I would never do it. And if I never did it, it would start a trend of not doing things and I would have a long list of regrets when I was an eighty-year-old woman looking back at my life. I grabbed my friend and went two days later.

Broken Ankle: Round Two (Ding, Ding)

Sunday night I came home from church and started playing basketball with the boys. Justin had taken the two older boys to Kingsport with him the day before to drop off some furniture and pick up the goal, and I had kept the two smaller boys home (one was sick) and cleaned up the office stuff in the hallway. And the craft/homeschool/extra snacks/toys closet. And the boys’ dresser drawers.

Sunday afternoon was the earliest the goal was ready to use. They played out for a couple of hours and went back to it as soon as they piled out of the van after church. I grabbed a ball and joined in. I went in for a layup, watching the shot to see if I made it (I did, by the way), and landed with my foot mostly off the concrete pad. I went down fast and sat down on the base of the goal. 

Mixed Emotions: Anticipating a New Baby

I’m finally thrilled to meet this baby. Not that there wasn’t always an element of thrill but it was masked in a lot of other things: shock, concern, busyness, for starters. Now I sit and watch this baby roll around, seeing his movements through my belly, and I can’t wait to hold him in my arms. In 10 weeks, give or take, Luke’s going to be kissable. My boys will finally see the little brother they’ve been waiting on. I’ll watch my beloved become a daddy all over again.

There’s also a good amount of apprehension with the excitement. That breath-catches-in-my-throat moment when I realize I’m going to be in labor again. My body is going to contract and agonize in order to bring this baby out to be kissed and there’s no getting around it. I’ll face those moments in the delivery room when I’m not sure that I can keep going and yet realize that I have no choice. There’s no other way but through.

And Baby Makes Six

I distinctly remember being in the hospital after giving birth to our third son thinking, “I never want to do that again.”

Within six months of having our first and second sons, I desperately wanted another baby. Not right then, of course, because I could imagine the havoc of multiple children that close in age, but I knew with everything in me that I wanted more children. After my third, not so much. Not after he was born, not when he was six months old, not when he was 18 months old. Not to try for a girl, not to have an even number, not to feel the magic of a baby growing inside me again. We were having serious “are we done?” conversations.

There were so many things associated with having another baby that I wanted to avoid: the stress over whether the baby has IVA, making plans for the baby’s care just in case he does have IVA, the prenatal testing for IVA, oh, and let’s not forget the actual labor and delivery part of it all.

And yet, here I am celebrating the Christmas season of 2016, easing out of the first trimester and, Lord willing, going to do it all over again.

Saying Goodbye to a Doctor

I colored the pirate with a chunky blue crayon and rarely looked my friend in the face. I paid careful attention to the coloring sheet as if it mattered to the structure of my life, as if I weren’t sure that I could hold it together without the finished picture. I still ended up wiping away tears. 2016 has been the year that involved crying over a doctor at Toddler Time.

In January, we rolled off the ambulance after two and half hours and entered the children’s hospital through the back doors to the emergency room. It was not the way I planned to spend my weekend but nevertheless, at seven on a Friday night, I thanked the ambulance workers and took Micah down the hall to the bathroom. We rounded the corner and the ER doors burst open as Micah’s metabolic doctor came in. He took a long look at Micah and started asking questions, giving orders, and hunting down the nurse. That’s why we transferred to the children’s hospital.

As we were settling into our room the ER nurse commented how unusual that was: genetics never comes to the ER. I breathed a prayer of thanks for how, once again, Andrew had gone above anything I ever expected him to do.

I Didn’t Speak Dutch: 3 Ways to Creatively Love Our Neighbors

Today I’m thrilled to share Charissa Steyn and part of her story of living in the Netherlands. One thing I’ve been praying about in my own life is how I can love the people around me who might not seem like “my people.” Charissa provides some examples where she was on the receiving end.

I’m embarrassed to say this, but after two years of living in the Netherlands I never learned Dutch. At least not anything beyond “hoi, hoi” which is a typical greeting for hello or goodbye in the southern province.

Anytime someone would ask about how my Dutch was coming along I would mumble something about my lack of progress. I often wonder how our time here would have looked if I taught myself to carry on simple conversation in Dutch, put my kids in a Dutch preschool, or took language classes once a week. Would we have stayed longer or had stronger community? Perhaps.

But that didn’t stop my neighbors, Reen and Hannelie, from embracing us.