Yes, friends. Life is busy for us these days. Busy, but in a fairly normal kind of way, and that’s a good thing. I’ve been getting a lot of the, “Hey, I’m not on twitter and the blog hasn’t been updated. How’s Pearl?” texts lately, so it’s probably time for an update.
There’s not a lot to tell you about in terms of how she is doing. She’s turning into quite a chunk, though! Her feet and head stay small, but everything in between keeps spreading out! She’s had no bouts with sickness recently, and that has really helped to keep her stable. Things have been fairly dialed in, in terms of her seizure medications, and she’s even eating the same amount as any other kid her age/size should eat! That’s pretty awesome, even if it is through a tube. Here’s to hoping she braves the allergy season without many issues. She is now 7 ½ months old!
As for me, I just wrapped a tour this past weekend, and it went really well. We were mostly in and out of town for about 5 weeks but we did have one run that kept me gone for 2 weeks. It’s behind us now, and Ruth and the kids did really well back home, thanks in large part to so many in our community reaching out to shoulder some of the load.
It feels good to be back working. I don’t know when I’ll be working next, but that tends to be how this industry runs, so we are fairly used to living in that tension. It was also my first tour of working strictly through my lens, and it appears that other opportunities are beginning to open up in that realm. That’s an answer to prayer.
Though we have found a bit of normalcy, life is still very hard. That’s not a complaint, but I’m just stating the facts, lest you think everything is smooth sailing over here. Once again, though, we’ve learned to operate within the difficulties with a bit more normalcy than we ever would have imagined.
If I’m honest, the downside of learning to operate within this normalcy means that we often forget that God is actually carrying us still. We get so caught up in the goings on of everyday life, that we forget that normal life in itself is a gift of grace. I know as soon as things fall apart again, we’ll easily find time and energy to plead our case before the throne, and I miss that. We never stop going. In a weird way, I miss the quiet nights in the NICU where every moment was rich, and all conversation was intentional and meaningful. These days, we’re just pushing through, rarely stopping to bow in awe of everything. I don’t suspect that we will find that to be a sustainable approach to things.
I’m thankful for the recent encounters and letters from strangers who have helped us to zoom out and put our lives back into perspective. It’s so necessary. I guess this is why scripture encourages us to share the gospel with each other over and over again. Unless we use those words to speak into each other’s hearts, we will forget to meditate on them. I’m thankful for friends and strangers who are able to look in from the outside and tell me what they see God doing in our family. That’s rich, and we are grateful.
This week is also HOLOPROSENCEPHALY AWARENESS WEEK, so please head over to familiesforHoPE.org and check things out. There are so many great stories to read over there, and there’s even a store if you want to pick up some gear to show your support. Or if you’d rather, there’s ways to simply donate. I can tell you that Families for HoPE is the frontline for supporting families who are dealing with or have dealt with an HPE diagnosis. There’s not another organization out there that is doing what they do, and they are extremely small. All that to say, if you feel up to donating, I can promise you that there’s not some corporate overhead that has to be met before the money will be put to good use. Thanks for checking them out!