Can I still say that now that I no longer live in the southeast? I’m not quite sure, but I know that I apparently say a lot of things that people out here aren’t too familiar with. I stopped counting how many times a day I have to repeat or explain myself!
It’s been a hot minute since I’ve done an update here. Per the usual silence on the blog, I haven’t really known what to say or not to say or how to say it. One day a book will come with all of our misadventures and everyone will have a good laugh!
Nonetheless, we have arrived to what is now “home.” We had some grand adventures along the way and made some beautiful memories- and we had some huge, scare-the-pants-off-you challenges at the end that tested and stretched us in new ways. Let’s just say being stranded in the desert for five-six hours with your children (one with special medical needs) and no clue how you’re going to get out brings a new level to your prayers… and those prayers keep rolling when you finally get a ride in the dark with a not-so-friendly guy riding around with large, living bearded dragons hanging on his neck… and then more so when you load your family up in the not-repaired RV to travel through the night through the desert in the middle of insane storms into unknown territory.
But we made it. We have been here almost two weeks now in a temporary rental, without an actual AC unit in this house while temps outside have been anywhere from 100-116 degrees during the days. There are bugs and lizards and cacti. Everything is dirt and rock and it smells funny. There’s not much in the way of shopping or restaurants unless we drive an hour or so away.
Yet there is so much beauty here. We are surrounded by mountains and God paints these desert skies with the most beautiful colors every evening. It’s peaceful and quiet, and at night you can see stars like nowhere else on earth. The people here are friendly and welcoming, and the opportunities for sharing the love of Jesus are endless. There is so much work ahead in renovating the church building and starting new ministries, but we can see God’s vision so clearly for this place and it is so exciting to be a part of that.
For our family, this has also been a time of beauty as we have had to rely on one another like never before. This adventure is lonely and we are all homesick- but we have each other and this has created a bond that we could not have formed any other way. We have a more unified family vision and our pace has slowed down in a sense because we are all working toward a common goal together. I watch my girls play board games and color and do crafts, and we sit down for meals together and talk and run errands together as a family. There is laughter and conversation and a peace even though we feel so far from home and normal. As a mom, it has been a beautiful thing to witness, even when we are driving each other crazy from all the togetherness and lack of personal space!
Even Harper has handled the transitions fairly well so far. She has had her moments, of course, but overall she has been adjusting very well to the changes in routine and structure and environment. She had a final EEG at Duke on our way out of NC, which did not lend itself to the greatest results. Her last EEG had shown improvements on her latest treatment, so they increased the medications in hopes of seeing more improvement (or even diminishing the ESES altogether). However, that has not been the case, and despite the increase in treatment, her EEG seems to be declining again. It wasn’t drastically declined, but her percentages were slightly higher and she was showing some activity in both sides of her brain again instead of it being localized.
The good news is that they pushed in a referral to the epilepsy center at CHOC out here in California, and they have already reviewed everything and called us with an appointment next week! We are excited to have a new doctor look at her case and get new input on potential treatment plans, so we are hopeful that this will be a step forward for our girl.
One thing I have been learning is that this journey of life is crazy, and scary, and inconsistent, and full of twists and turns and uncertainties… but God is not. He is just as true today as He was in the beginning and as He will be tomorrow. He is good when circumstances are great and when they are rotten. He is faithful when I can see the beauty around and when I feel lost in the mess. He is our steady hand, our firm foundation, our solid rock. He is God.
Know therefore that the Lord your God is God, the faithful God who keeps covenant and steadfast love with those who love Him and keep His commandments, to a thousand generations… (Deuteronomy 7:9)