Another New Normal

bright eyed

An update from Eric:

So I’m sitting in a Wal-Mart parking lot right now, waiting to get on a bus for the second time since Pearl was born. Last week was the first time, and it went really well. It may seem odd that I’m touring again, but from what we’ve figured out thus far, light touring seems to be the most cohesive type of employment for me. Sure, the days of me going on the road for 2 or 3 weeks at a time are long gone, but doing weekend-warrior type touring seems much more compatible with life (hey, remember that phrase?) than a job with a more traditional schedule. It’s easier for me to commit to weekends at a time than it is for me to commit to being at a job every day from 8-5, so we’re trying it out.

Ruth and the kids really did great last week when I was gone. We had some babysitting and meal help from friends, but I suppose that will always be necessary for as long as Pearl is with us. We will always have the element of need, but my working is a step toward us being able to carry more of our own weight, and hopefully to begin carrying more of the weight of others. I’m so thankful that we live in a community that doesn’t begrudge our need, but from all appearances actually seems eager to be involved. And Ruth really seemed to thrive as well. It wasn’t easy, but I suppose there’s that element of not having another stay-at-home parent speaking into every minute decision and having the freedom to run things completely as she sees fit. Every time we spoke on the phone, she spoke with peace and confidence and that helped me to be more present at my job.

I never would have imagined that we’d be in this place. I know I say that all the time, but those first few weeks that Pearl was with us made it seem like caring for her was a 3-person job. Our home is much less Pearl-centric than it used to be, and we have really found the balance in caring well for all three children. We don’t feel pulled in all the directions that we used to. God’s been so gracious, and has equipped us in so many ways. It’s true that he gives everything you need to accomplish his purposes, and that means so much more than mere material sustenance.

And since this blog carries her namesake, I suppose an update on Pearl is in order. Last week she started with an in-home physical therapist, and that is yielding amazing results already. The therapist has been very encouraging in pointing out what Pearl can already do that she shouldn’t be able to do. It’s kind of hard to explain, but according to her, it appears that her brain is operating as if some of the missing parts are actually there. The brain energy is there in spite of the brain matter not being there. The best way I can think of to articulate it is that it’s almost like “phantom” brain power, sort of how some amputees still have phantom limbs, though Pearl’s brain isn’t operating with any type of nerve memory. Her therapist was quick to point out that comparing those two things isn’t completely accurate, but close enough for laymen. She also seems fairly convinced that Pearl actually is able to see, though she focuses peripherally. That explains why she always seems to be looking just outside of the frame when I take pictures. There is a lot that we have assumed were just random movement or uncontrolled functions, but she is confident that it is otherwise. We are super excited to see what all Pearl may be able to learn. Her therapist rattled off a bit of her resume and she’s taken quite a few “hopeless” scenarios and turned them around. Please pray that Pearl will continue to thrive and continue to improve. It’s absolutely breathtaking to hear her therapist talk through possibilities and goals.

So that’s it. I know, it’s a fairly brief update, with not a lot of weight or emotion, but that’s a good thing. That means normalcy is settling in! We are all very busy, and most of the time it’s easier for me to throw a 140-character update on Twitter than it is for me to sit down and think through a blog update. We spend so much time doing normal things, and life is hectic! Thank you all for praying, for reading, and for participating in all of this with us. It’s privilege that we don’t take likely, that you are still checking in, still praying, and still jumping up and down in the bleachers. There’s so much to celebrate and this little girl continues to confound us all.

cupcake Collage

3 more Cupcake Fridays!

pearl at night

late night feedings

tgiving1

Thanksgiving with friends…

tgiving 2

grateful

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14 thoughts on “Another New Normal

  1. I think the need to give and the desire to help, to be of some use is ingrained in our hearts – feeling like our prayers and our words have strength is powerful. I may not have the ability to physically help your family, but I do have a sink full of dirty dishes waiting for me – giving me time to pray a rosary for Pearl while I wash them and it feels like help. Thank you for sharing your story and letting me help.

  2. Thank you for updating on Pearl. She’s a gift from God for sure. Not only are a lot of people praying for her and her family, but they are interested in helping in any way they can! This was no mistake! This was a miricle! God bless you all.

  3. This news is a true Christmas blessing. Thank you for taking the time to let us all know how you and your family are doing. We’re still praying for you and Pearl everyday.

  4. I love to read about you and your family having a new sense of normalcy back. Love to hear about Pearl’s improvements, her goals to reach, her “things to do”. Your faith is humbling and empowering, and your family is a blessing for everyone that gets to know it. Much love and prayers. Clara

  5. I am SOOOO GLAD to hear that things are going well with Pearl and your family. I pray that things continue to improve and she proves all the doctors wrong. God love and God bless Pearl. May your family continue to have steps towards their ultimate goals that you have. I wish you the BEST holiday EVER. You are an amazing family!!!

  6. Thanks for the update. I enjoy reading them. I’m so glad that you guys have found a good physical therapist, and that you have found more of a balance. Continuing to pray for you and your family.

  7. So excited for Pearl and for you guys! Your community is PROUD of you and the shining example of Christ you provide to the world so carry on brother! Really glad y’all are getting some normal time too! Hope you guys have a wonderful Christmas!

  8. i’m fascinated and thrilled by pearl’s journey and by your writing, eric. you’ve got a gift! you’re real and warm and funny and – a blessing to my heart- you write well. (i’m an english nut) praying for your baby, your family, and your lives, that God would use pearl’s story, however long, to show the reality of Jesus Christ’s influence in this world.

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