About Amanda Bible Williams

Wife + Mama + Writer + Grace guzzler. Editorial Director of She Reads Truth.

Happy Birthday, Pearl!

pearl birth day

One year ago today, on July 27, 2012, at 12:07am, we welcomed sweet Pearl Joy Brown into the world. From the moment she took her first breath – a miracle in itself! – she has blessed us all more than we could ever imagine.

Now, 52 Cupcake Fridays later, we will gather to celebrate her one year birthday! If you’re in or around Nashville, join us! {Click here for details.}

52nd cupcake friday

Sweetest Pearl, Happy Birthday to you!

Thank you for bringing us joy.

Thank you for teaching us about love and hope and grace and life.

Thank you and your precious family for allowing us all to be a part of your amazing journey.

We love you, Pearl Joy Brown!

photo 2

Prayers for Pearl

pearl hospital

Good evening, friends.

On behalf of the Browns, I would like to ask you to pray for our sweet Pearl. After a rough few days, Pearl was admitted to Vanderbilt Children’s Hospital on Wednesday with pneumonia. Early Thursday morning she was transferred to the PICU.

Pearl’s condition has improved somewhat over the course of the day but, as of tonight, she is still on partial oxygen and undergoing some tests. Eric reported that the doctors who know Pearl believe that she will come through this, while others are not sure what to expect. As Eric tweeted this evening, “Neither of them numbered Pearls days nor do they hold her in the palm of their hand. They are all doing well by her, though. We’re thankful.”

Please lift sweet Pearl to God in prayer. He has been so gracious to her and to all of us through her. Tonight we pray that He will heal Pearl’s body, that she may continue to thrive and God’s glory would shine even brighter through her.

Please also pray for the Brown family, that the Giver of Life would sustain them and give them all they need for each day, and for the doctors and medical staff as they care for this precious child who is so beloved. Though the Browns are not able to respond to each of your encouraging words, they are grateful for your messages, comments and especially your prayers.

visiting pearl

And now, in keeping with the joy this little one always brings, I leave you with a photo of quite possibly the cutest mouth God ever gave a child.

Ladies and gentlemen, Sleeping Pearl:

pearl mouth

As Eric says, you’re welcome.

“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

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Thanksgiving with friends…

tgiving 2

grateful

Happy Sweet 16, Pearl!

This morning at 12:07 AM, Pearl Joy Brown turned 16 weeks old! Prayer updates are below, but first let’s take a moment to celebrate the beautiful life of this baby girl. Sweet Pearl, you are indeed a joy and a blessing.

The last weeks have been fairly peaceful for the Browns. There have been birthday parties and trips to the park, ordinary family outings and even a Sunday at church as a family. Pearl has done so well, and there have been no hospital visits in well over a month. Praise God!

This past week little Pearl had an ear infection, but she weathered it well and is once again fever-free. Her seizure activity and restlessness are up some since the infection. Please pray with us that these will subside so that she and her family can rest well.

Thank you for your continued prayers and support of precious Pearl and her family. As Thanksgiving approaches, please know that we (friends of the Browns) and the Browns themselves are thanking God for you.

A post-fever sleeping beauty.

Brother Brennan rockin’ the bike, sans training wheels.

Sister Abbey, being awesome.

Sovereignty & Suffering: a response from Eric

So, yeah. It’s been quite a while since I’ve actually written anything here. Life is hectic, and often my mind is running a million miles an hour and I don’t even stop to process all that has gone on and all that continues to be our day-to-day life. Other times, I’m so exhausted that my mind can’t muster a single cognitive thought, and I am quick to fall into being numb for a little while. Some days, I wake up so filled with joy that I sit down to write and share all that God is doing, only to have my entire perspective on life flip over something trivial and I spend the rest of my day wallowing in despair. I make notes here and there to myself, knowing that at some point this season of life will be over, and I will find myself overturning any rock just to grab a faint memory of the richness, joy and difficulty of it all. It has been such an extreme whirlwind already, and much of it feels like a blur.

I suppose you have stumbled across the myriad articles, blogs, and forums about my family that seem to be stretched to the far corners of the Internet. What started as me sitting down with a Tennessean reporter for coffee here in East Nashville has blown up into something that I never saw coming. It seems everyone has picked up on Pearl’s story from The Washington Post and Daily Mail UK, to USA Today and probably the most visible being The Huffington Post. There are even a few political forums and atheists’ blogs who’ve felt the urge to chime in on things.

It’s tough to not go and read what others have to say about my family, and I admit to giving in to that urge too much. There are so many assumptions, accusations, and misunderstandings being discussed, and it is a fight to not engage the insults, so I haven’t much.  There’s something strangely sanctifying when your weakness and character (some of which is actual, a lot which is completely untrue) is put in bold letters, all caps, and displayed for anyone in the world to read. It’s humiliating, but not completely in a bad way, when you see that the majority of the 7000+ comments on The Huffington Post are from people who are overwhelmingly unimpressed with you and your decisions. When you get shredded to the degree that we have, you’re left standing naked with nothing left to prove. Which is where we were all along, but never realized it. It’s freeing to know that even if we tried to prove ourselves, our efforts would return void, so we ought not even try.

Instead, we look the other way.

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. Philippians 4:8 (ESV)

The amount of darkness seeping in through all these outlets pales in comparison to the amount of beauty and life pouring in through other means. It’s not as though we retreat into our church community or our other friends, but instead we stand alongside of them. We don’t escape into a false reality where nothing stings and suffering doesn’t exist.

We engage actual reality, which is this: God, himself has written a beautiful story. A story that he wrote before he even started building the world. He has an endless reserve of everything that he needs to accomplish his purposes and sustain us in order to fulfill our roles in his story. We can’t exhaust this. He sometimes chooses suffering as a means to accomplish his purposes, and then invites us to enter into that suffering rather than avoiding it. And then he meets us there. He pours himself out for us and fulfills every single promise that he has made to be with his people. He privileges us to participate in this together, as a community and with him. And at some point, we will receive a reward for being given the grace to persevere, and for not losing sight of the One who has actually been carrying us the whole time. How incredible is that? We actually receive a reward for receiving a gift! There’s really not much we bring to the table. It’s all a gift.

So that’s what we dwell on. That’s what sustains us. That’s what makes us not avoid suffering. And that, I believe is what drives others to join us in this. In spite of all appearances, our life is filled with beauty and wonder, and we are sustained by a God who is gracious, patient, and crazy with his love for us.

And this same Creator, who is gracious and crazy in love with us, is also sustaining Pearl. According to every doctor she has, she is not suffering and her seizures aren’t painful for her. They are disorienting, and they are exhausting. However, they have been very much under control for a few weeks now. We constantly revisit and adjust her prescriptions, finding that balance between using enough medication to keep the seizures minimal, but not giving her so much that she is completely disengaged from the rest of the family. Is life hard for her? Yes, it is probably very difficult for her. Though she is not on oxygen and breathes without the help of a machine, breathing is extremely tiring for her. Her nasal passage is abnormally formed in such a way that air does pass through it, but not always easily.

Life is hard for Pearl, but her Maker gives her all that she needs. He is with her, and she belongs to him. He is the Good Shepherd and he looks after her. He opens her eyes when he is ready for her to wake up, and he gives her body rest when he is ready for her to sleep. He makes her to lie down in green pastures and he leads her beside still waters. Pearl is his. He will sustain her long enough to glorify him in living until he is ready for her to glorify him in dying… and she will be with him forever. Those decisions have never been up to us and never will be.

And life is hard for Brennan and Abigail as well. They have made many sacrifices over the last few months. Every time Pearl is readmitted into the hospital, their lives turn upside down. One of us is always there with Pearl, so they are left with only one parent to kiss them at bedtime. Brennan has mentioned more than once that to him, this is the saddest part of Pearl’s hospital visits. They have had to cancel many play dates and trips to the park because of situations that arise with Pearl. Abbey celebrated her 3rd Birthday at the chicken strip shop across the street from Vanderbilt, because Pearl had to be admitted and one of us had to stay with Pearl. They live in the constant tension of knowing that their baby sister will probably not be with us for a long time. So, are they suffering through this? Absolutely. Are they learning and experiencing things as toddlers that many adults never learn? Yes, they are. They are growing in so many beautiful ways. We play ninja swords and change baby doll’s diapers when we can, but it’s not nearly as often as they would like. Brennan is struggling with his identity and his role in the world. He’s down on himself sometimes and at other times, thinks he deserves to be the center of attention in whatever room he just walked into. So what do Ruth and I do as parents? We walk humbly and cautiously. We lean further into Christ asking him to equip us and give us insight into how to best shepherd them. We know this is hard for them, and we never take that lightly. The same God who is sovereign over me, Ruth and Pearl, is also wholly engaged with Brennan and Abigail, and he has their best interests in mind with everything he is doing.

So there you go. Life is hard. And beautiful.  And filled with awe. And wonder. And suffering. And peace. God is sovereign over all of my family and there is not one particle of dust on our living room fan that he isn’t in control over. He is the Good Shepherd, and we trust him. He is here with us, and sometimes he ordains that we suffer, all the while we know that it is for our good and his glory. If he didn’t spare his only Son from suffering, but rather ordained it, why would he spare us from all suffering? I’ve got to be honest…I read ahead and I already know how the story ends. Jaws are going to hit the floor. Actually, knees will hit the floor as well. All of this suffering, which is true suffering, seems quite temporal in light of what’s to come, and what’s already here.

by Eric Brown

Thank You!

Today, on Ruth’s birthday, the Browns took their first ride as a family in their new van!

Thanks to all of you for contributing to this wonderful blessing through your prayers, support, words and gifts. Eric, Ruth, Brennan, Abbey and Pearl are deeply grateful.

It has been incredible to watch our infinite God move through his people in this tangible way. Thanks be to God!