Norman Rockwell Christmas?

Brown Family

So yeah, this isn’t the year of the Norman Rockwell Christmas for us. In fact, every attempt I’ve made at celebrating the Advent season has been derailed in some fashion. I’ve yet to be able to sit through the entirety of any service or function that is Christmas related. That’s been tough on my soul, as all I want is for life to slow down enough for us as a family to be able to enjoy some (dare I say, “leisure”) time together and to celebrate all that the birth of Christ has meant for our family, especially this year.

But just like with all those prenatal prayers when I asked God to heal Pearl, he is up to something different than what my heart desires. And just like that season of brokenhearted prayers when he said “no” over and over again, I can’t see what could possibly be better than what I am asking. Alas, my head trusts what my heart doesn’t. That tends to be the case most days right now.

It will be Christmas Eve by the time I am finished writing and posting this, and we are at Vanderbilt Children’s Hospital again. Pearl has pneumonia and that is not something to be taken lightly for a child with HPE.  In fact, it can often be fatal. She was admitted on Saturday, so the doctors can be extremely proactive on the front end to battle this. She’s had a rough week and the last 2 days especially have been rough. Tonight, she is resting well. They have adjusted her medication and she’s getting heavy doses of a lot of drugs to try and battle seizures that are brought on by pneumonia. The hope is to once again balance the medication in such a way that her seizures are suppressed, but to not medicate her to the point of affecting her breathing. It’s a fairly calculated balance that sometimes takes a few days to dial in. We need to get rid of the fluid build up in her lungs, and that is a fairly urgent goal.

The older kids are doing well. Since we’ve only been here for 2 days now, the weight of the family being divided hasn’t yet started to take its toll. I imagine a bit of the weight will set in on Christmas morning when some of us wake up at home, and some of us wake up at Vanderbilt. I’m not sure what that’s going to look like yet. It’s not as though the Christmas morning gift giving is a huge part of our family celebration but it’s a huge part to the kids, so I’m sure we’ll figure something out.

I’d be lying if I said I wasn’t missing the sentimentality that is usually associated with this time of year, and that is tough. I know it’s all silly stuff, some of which is completely meaningless, but it’s silly stuff than often reflects deeper feelings. I wish I could clearly articulate to you why God is not allowing the sentimental warmth this year, and why he has instead, chosen this for us. I can still see gratitude way off in the distance. I can even see clearly with my eyes all that we have to be grateful for. Even as I type this, I’m sitting in a room at Vanderbilt… Vanderbilt…A prestigious medical community that is right in my back yard! My family isn’t split by hours of travel between our home and here. My daughter is here with me, about 5 feet away. I never dreamt that I would be with her on Christmas Eve. It’s incredible, though my heart is still pounding with frustration, worry, and entitlement.

So this Christmas is hard. This year is hard. Everything’s hard. But God continues to mold our hearts to be more like his. He continues to say “no” to what we ask, and instead offers us something richer and better than we could ever fathom. He continues to keep us at bay from our own desires and he uses his rod and his staff to shepherd us along the path. He continues to watch over all 3 of our children, caring for them and transforming their character to be more like his.  He continues to provide for us, and continues to weed through all that needs to change in our hearts. He continues to give us difficulty, and then he equips us for it, and often times, on the backend, shows us what he was up to the whole time. I’ll take it. I’ll take this life. I’ll take a split family Christmas over sentimentality, if that’s what he’s doing. Though my heart can’t see it, my mind can clearly see that whatever he is doing is better than what I would have chosen for myself.

So Merry Christmas from The Brown Family! Thank you for participating in this life with us. Thank you for not merely observing. Thanks for taking the time to read, and please pray for a quick recovery for Pearl. She needs to clear out this fluid before it get’s worse.


“Hey, Negative Nancies… Step off!”

Last night in her family’s living room, little Pearl Joy Brown did this:

pearl pushups

Yes, that would be Baby Pearl pushing herself up from a lying down position and staying that way for a solid minute (an item close to the top of the “Things Pearl Should Not Be Able to Do” list).

The nurse gasped. Ruth and Eric gasped. All of Twitter gasped.

If Pearl could speak, I’m pretty sure the moment would have gone something like this:

booyahYou tell ’em, Pearl.

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


Thanksgiving with friends…

tgiving 2