Your very great reward

It’s been over a month. Whoops…I was not intending to go on that long of a hiatus. But life has been a little busy in the Johnson household. There’s the whole newborn…ummm, I guess I should probably stop calling my almost three month old a newborn…there’s the whole baby slew of things to do (read: feed and change diapers). We’ve had at least one doctor’s appointment every week since returning home. There’s a toddler to entertain without exposing her to too many public places (we’re officially on guard against illness for Bella’s sake). And then for the fun of it in the midst of all this we decided it might be a good time to move. Not far, mind you, but whether you move 3 miles or 300 you still have to sort and pack up all of your life.

We in no way planned to move right now. Frankly, 2015 has held enough stressful events to last us a few years. But through a series of unexpected events and a few fleece laying-outs the door opened and we couldn’t resist walking through it. And so we’ll be moving (if all goes according to plan…) the weekend before Thanksgiving.

So a confession. In the midst of this crazy season, when I’d get to the end of a day of feeding, and pumping, and medicine administering, and feeding, and pumping, and washing dishes and pumps, and cleaning bottles, and answering a toddler question for the hundredth time, and throwing toys in the cavernous under the staircase closet one more time for a showing/inspection/appraisal/etc…at the end of such days I would feel like I had run a marathon. And everyone knows if you run a marathon, you deserve a reward. So when the toddler was finally asleep in her crib, and the baby snoozing in her swing, and the task list set aside for the night, I would indulge in a small bowl of ice cream. It was a small yet very great reward to a day of labors.

And so, when it became clear about a week ago that I was going to need to adopt a dairy free diet for the sake of little Miss Arabella I wanted to cry. In fact I believe I might have cried. It was just one more thing. I love to cook. I love making dinner for my family and others. Growing up, food was one of our family’s love languages. And the anticipation of a favorite dish for dinner is sometimes what helps me get through the afternoon. And those favorite dishes? Yep, pretty much all of them contain dairy. Now THIS was going to be taken from me? And in the midst of packing up our lives and feeding and medicating and managing all of the specialists I was going to have to come up with a whole new recipe repertoire? And right as we head into the holiday season? And my ice cream, my daily reward…You can see where this is going. Massive pity party, party for one.

In the midst of my pouting, one phrase started to pound through my head, “I am your very great reward.” This was a promise given to Abraham before the Lord listed out the details of his blessing and inheritance. It is perfectly acceptable to enjoy the good things of this world. It’s quite alright to delight in ice cream. But. My truly very great reward? Is the love and faithfulness of my Lord. And He’s enough. More than enough. Even in a butter-less, milk-less, cheese-less existence.

I have seen you in the sanctuary
and beheld your power and your glory.
Because your love is better than life,
my lips will glorify you.
I will praise you as long as I live,
and in your name I will lift up my hands.
I will be fully satisfied as with the richest of foods;
with singing lips my mouth will praise you.
(Psalm 63)

And so in those moments when the cravings hit and the pity crouches outside the door, I’m trying to remember to feast on the words of the Lord. To remind myself that I have a much greater reward than ice cream.

Those of you for whom food is merely a means of survival, and not a daily delight, may be chuckling at my emotional despair at losing all dairy products. Those who love a good aged cheese with a nice bottle of wine I imagine have hearts swelling with empathy. Both parties are welcome to leave a link to your favorite dairy free recipe in the comments.

Lastly though, a bit of an update on little Miss Arabella. The past couple weeks were a little rough on our typically sunshiny girl, but the removal of dairy has done wonders for her mood. We got our first laughs this week, and the girl continues to flash the biggest grins at anyone who will stop to talk to her. Recent trips to the cardiologist revealed the good news that it looks like we’ll be able to wait until March for heart surgery. However, that requires us to keep the household healthy through the winter months – so we will likely be hibernating quite a bit. The doctors have solidified the diagnosis of Ellis-Van Creveld Syndrome, a very rare form of skeletal dysplasia, and we were able to meet with the skeletal dysplasia team last week at Children’s to talk a bit about what the future might look like for her. The doctors (and nurses) were quite excited to meet our girl after reading through her chart prior to our appointment. Her syndrome is estimated to be lethal 30-50% of the time, and she had all four markers for a lethal outcome during my pregnancy. But Jesus. Tomorrow we head back to Seattle again to meet with the craniofacial team, a team we will likely come to know quite well as this syndrome comes with a fair number of dental/jaw issues. Right now, though, they want to check in to make sure her eating and breathing isn’t being impacted negatively by her small mouth. Personally, I think they just want a glimpse of a miracle. It’s our hope that this might be our last trip over the passes to Children’s hospital (land of many germs) until the spring. Thank you for continuing to strive in prayer on our girl’s (and her parents’) behalf!