A long list of praises

It’s been another full two weeks for Baby Pearl and family.

Last Friday, Pearl celebrated her 8-week birthday! Also, shortly following their last NICU stay, the Browns got approval for part-time in-home nursing care. The nurse is a huge blessing to Ruth & Eric, assisting them in Pearl’s life care plan and even allowing them time to occasionally do household chores, errands and even sleep! Pearl has also begun therapy which is, in Eric’s words, the anti-hospice. Praise God! She is tolerating her nasal stint much better now and is breathing with much more ease because of it.

Pearl is becoming quite the little celebrity, spreading news of God’s goodness in a way no one could have dreamed. Just last week, a local Nashville news channel featured Pearl’s story. You can view the video here. Your Letters to Pearl (which can be found here and here) were another beautiful way God is using this tiny girl to share hope with so many. Thank you for sharing your heart in words.

We are also overjoyed to report that, thanks to your generous gifts to the ChipIn account and via mail, the goal for the Van Fund has been met! THANK YOU for contributing to this effort and spreading the word to others. The Browns are in shopping mode now for their new-to-them van, and we will update with a photo as soon as they get their new wheels. They are blown away by your kindness and generosity. Thank you for caring for them in this way.

Please continue to pray for Pearl, Ruth, Eric, Brennan & Abbey. Cold and flu season is a particularly worrisome because those common illnesses can be fatal for children with Pearl’s condition. Please pray that God will continue to protect Pearl from illness, as well as the rest of the Brown family. Please pray for rest and patience for Ruth and Eric as they care for all three of their young children.

Thanks be to God for his good gifts!

8 weeks!

hangin’ out

bath time

yawwwnnnn

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Letters to Pearl from Ruth, Brennan & Abbey

As we wrap up this week of your beautiful Letters to Pearl, there are three very important letters left to share — from Pearl’s mama, Ruth, and from her brother and sister, Brennan & Abbey. Thank you for sharing your hearts this week, friends. The Browns are so very grateful.

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Ruth’s Letter to Pearl

Sweet Pearly Girl,

I started praying for you when you were just a twinkle in my eye – when your dad & I realized someone was missing from our family. I was so excited when I found out you were growing in my belly! Two weeks later, we had an ultrasound for an early pregnancy study I was participating in. You measured smaller than they thought you should, and your heart was not beating. It should have started just a few days before. The doctors weren’t sure if you were just a few days younger than I thought or if you were already gone. I was devastated and confused. I cried out to our Father. I was afraid to hope. A week later we went back. Your heart was beating strong! And your dad and my hearts leapt for joy! It was days before Christmas and our family’s celebration of the miracle baby King was sweeter knowing that you were with us.

You grew, and a few months later, as I sat on our couch, I finally felt you move inside me. Again, I could hardly contain my excitement, my joy. I called your dad to tell him the news. It was proof that you lived inside me still! Our ultrasound would be in just a week, and it was reassuring to know you were doing ok. I am thankful for that week I thought everything was great before the time that was so hard. The next week would change my life forever.

The next week we had our ultrasound. The technician told us you were a girl and pointed out your beating heart. Your dad and I smiled at each other. She didn’t tell us much more and sent us to the midwife. After a long wait, the midwife finally came in to see us and started crying. She told us what the technician wasn’t allowed to – our baby girl was not ok. You had a condition she didn’t know much about, but told us you wouldn’t live. We were all heartbroken. We were all devastated and confused. How could this be? She sent us on to someone who should know more.

Baby, the great Physician knew more than all the specialists we met with. He knew more than the other parents we wrote to. He knew because He made you the way He wanted. He had already planned your life. He knew that sometimes the most humble ones could teach the most profound lessons. And teach the world you have! Lots of people say their faith in your Creator has grown. They say He did a miracle. Lots of people say they have learned to accept His will more gracefully, that they learned to love each other more fully. I am learning to trust him through difficulty, to be thankful for everything, to rest in his provision.

Sweet girl, I pray that you can feel how much everyone loves you. Do you know that’s what all the hugs and kisses and googly eyes mean? Practically everyone who meets you falls head over heels for you, even people who have just read about you. I pray that you know that more than how difficult your life has been. I pray that our love comforts you when you seize or have trouble breathing.

Brennan & Abbey love you a lot, too. They do their best to help Daddy & I take care of you. They give you all the kisses we’ll allow before we get worried about too many germs. They sing you songs. They’re learning a lot about God. We talk quite a bit about heaven and how great it will be when we’re all there together one day. It will be better to be where no one is sick and we can run and not get tired and there aren’t any tears. Brennan wonders if we can have a big celebration when we’re all there and maybe throw cupcakes. I think that sounds like a great idea! We may not get to feel you hug our necks, kiss our cheeks, or hear you tell us you love us until we get to heaven. I hope the waiting will not be too hard.

Pearl, you’re special. I’m glad God gave you to our family, that He said yes to so many of our requests. I’m thankful for your sweet bright red hair – I think God gave it to you just for fun – and your big beautiful blue eyes. I’m glad I get to take care of you and kiss your cheeks and share you with the world. I’m glad He will help us through all the times we might be sad or confused or hurt or think that this life is hard. I’m thankful we’re all learning more about Him.

I think God helped us pick a very fitting name for you. You are a treasure to me. Your sweet life is formed around an illness but shows beauty to all. You have helped me find lasting deep satisfaction in the Lord. You are my precious daughter, Pearl Joy Brown, and I love you.

~Mama.

* * * * * * * *

Brennan’s Letter to Pearl

Dear Pearl,

I love you so much, I don’t even know how much. I’m glad you’re my sister. I like kissing you and hugging you and giving you lovin’s. I hope we get to see each other in heaven whenever we want, and that we get to run whenever we want, and that we get to play games. Running games, cause we’ll be able to run without getting tired.
I think you are too sweet!

~ Brennan.

* * * * * * * *

Abbey’s Letter to Pearl

Hi Pearly Girly,

I always love you so much. I like to hold you a lot. I hope I get to see you in heaven. Jesus is our best friend.

~ Abbey.

Eric’s Letter to Pearl

Sweet Pearl,

I’ll never forget that December evening I found out you were coming. I was in Indiana, helping the David Crowder Band finish up the last of their shows, and your mother called to let me know she was pregnant. I was honestly a bit perturbed as she and I both knew that I was coming home the next day. I couldn’t understand why she couldn’t wait but I leaped for joy nonetheless. I remember running backstage to tell the guys, though they were literally walking on stage when I shouted it to them. The confusion on their faces spoke volumes. Why couldn’t I wait until we were on the bus that night to share the news? They were kind of in the middle of something! Seems we were both a little over-enthused at the news of your conception! It makes sense now.

I’ll spare you all of the medical details of what happened while you were inside your mother’s belly, as I can imagine you’re tired of hearing about that. You probably don’t even care.

We had spent several months preparing to meet you and say goodbye all in the same breath. People from all over the world had spent weeks praying for you, pleading your case before the throne of the King of the universe. Your mother and I, too, had pleaded your case, though most of the time our prayers felt more like grabbing at straws than they did actually speaking with the keeper of promises. To be honest, we didn’t even buy any of the normal baby things for you, though we did already fill out the paperwork with the funeral home so all that had to be filled in was the dates and times. We spent more time preparing ourselves for what it was going to feel like when the funeral home came to pick you up at the hospital than we did wondering how on earth we would care for you…perhaps a tactical error on our part. We’re figuring it out though. Thanks for being patient.

And then on July 26th, we were given the news that you needed to be born immediately, as things were looking a bit rough for you in Ruth’s belly. The conversation that day that we had with your brother and sister was one of the hardest conversations we’ve ever had. I remember going to Suzannah’s house and sitting with them both to tell them that the doctors didn’t expect you to come home with us. Your brother was perplexed and asked if you were so sick that you would probably die.  I told him the truth and he melted. You are so loved by your siblings, and have been since long before you were born. Even now, they will often come put their cheek next to your mouth to see if you are breathing, though they try very hard to not give you any germs. I hope that you can somehow feel that love.

So, we packed our bags in silence and headed to the hospital. We sent out the bat signal that you were coming, and it felt like the entire world stopped and prayed for you. We were so excited to meet you and so confused as to how to say goodbye. We had long been prepared for the reality that you would in all likelihood not make it through delivery, but after literally one push, you were born! Your mother was still lying flat on her back with the bed sheet pulled up, because none of us expected you to come so quickly. We intended to have an entire team of specialists staged outside the door, along with a photographer and the other kids, but there was no one there when you were born!

My heart sank. She pulled back the bed sheet, and there you were, beet red and lying still on the bed. A flood of questions ran through me: Are you alive? Did you make it through delivery? If you did make it, are you dying already? Or, is there a small chance that you are going for it, that you’ve got fight in you? And then you opened your eyes and looked up. I doubt you intentionally looked up, but when you did, your eyes were so beautiful and filled with life. Words can’t describe that feeling, so I won’t try. Ruth knows the feeling, and her midwife comes close to understanding the depth of that feeling. We’ll keep that one between us until we’re all on the other side of the veil. Words on this side would certainly only undermine the depth of that moment.

We were told that if you made it through delivery, the moment of your birth would be your strongest and that as your systems tried to start up and your brain wouldn’t tell them how to function, your body would start shutting down. And then the milestones started stacking up. You made it through birth, so we cut the cord. Your heart had a little trouble at first, so your little chest got a massage. And then your heart was doing fine! You had a good bit of trouble breathing, so they cleaned your passages over and over and blew some oxygen in your face. And then you were breathing, so we took pictures, and you were still going. So…off to the NICU! That was an incredible moment when they took you away. We were told that if it looked like you didn’t have fight in you, they would clear the room so we could be alone as a family, but that is not what happened! They hauled you off to fight for you!

That was by far the most amazing night of my life. We watched the hours stack up and you thrived. Each hour was a miracle and still is, though to be honest, these days it’s easy to forget at 3 a.m., when you’re seizing and throwing up everything that we spent the last hour trying to feed you! Hours turned into days and people from all over were driving and flying in to meet you. Doctors would come to see you, and they would close the door and start crying. Family and friends did the same thing. Even employees from other parts of the hospital would come in, close the door, and cry by just meeting you. So many of these people had prayed for you for weeks and weeks and there you were. Alive. Engaging. Beautiful… a miracle, in its most certain form.

God had done a miracle. Not a normal, everyday miracle, but the kind of miracle that makes jaws hit the floor. And he allowed all of us to participate. I’m convinced that miracles exist not primarily for the recipient of it, but for the sake of the name of the One who performed the miracle. But how glorious it is to be on the receiving end! You reap the gift and the Giver! Amazing.

So after a week or so of being in the NICU, we brought you home under hospice care. Sure, you’ve had a few moments since then that you weren’t doing so well, but after a couple of visits back to the hospital, you are doing wonderful. So wonderful in fact, you graduated from hospice care last week. Well, maybe you dropped out… following in daddy’s footsteps.  I’m okay with that, up until a point.

Today you turn 7 weeks old. I don’t know if you know this or not, but every Friday someone brings cupcakes over to our little house and we celebrate your life and we celebrate the Giver of that life. One day, you will meet Him, and much of this will make sense to you. We are starting to run out of room for candles on your cupcake though! Sweet girl, you have turned our world, and arguably the world of our many others, upside down in the most beautiful way. It is such a privilege to have you in our family. I don’t remember what life was like before you, and I can hardly imagine life without you. Thank you for the sleepless nights. I wouldn’t trade them for anything. Thanks for being patient while I try to photograph every moment. I so look forward to hearing you laugh and feeling your hugs, though I understand you might not be able to do that here. That’s okay. Eternity may have already started but there’s much more of it left to do those things!

You may not have any idea who I am. I don’t know. Maybe you can’t even recognize or remember me from 2 minutes ago. That’s okay. That will not always be the case. You have taught us all what it means to be carried through life. You have taught me that self-reliance is a lie, and you have taught me clearly how dependent I am. Thank God it’s not up to me. I never would have chosen this life for either of us, but it’s so much better than anything we would have chosen for ourselves. Thank you, baby girl. You are loved more than you will ever know here, and more importantly you are shining brightly the Light of the world…to the world. I am so proud of you.

Love,

Daddy

* * * * * * * * *
Reminder: Today is the last day of the Letters to Pearl link-up. 
If you’d like to write a letter to Pearl, you can share it on the blog here or via Facebook here. All lengths & types of letters are welcome. Just share your heart with this precious girl. And thank you for this. You’ve made it a beautiful week of reflection & celebration.
 

An Update from Ruth: 9/12/12

Friends,

Our world is ever-changing! Since the last update from us, we’ve been back in the NICU for a few days, Abbey turned 3, and now we’re back home and just started part-time, in-home nursing.

In the hospital we addressed Pearl’s breathing troubles a little more in-depth. We talked about the possibility of a tracheostomy and decided against it for now. We got more comfortable using a few “tools” to help her breathe when she has trouble. While there, we also realized she had a virus (fever, snotty nose, upset tummy), so waited until she was over that before coming home.

We also talked more in-depth about our goals for Pearl’s care and developed a team to support her health and us, as caregivers. Her team includes a pediatrician, neonatologist, ear nose & throat specialist, neurologist, and a private-duty nurse. We are pumped! These guys are all great at what they do, and all are willing to help us figure out how to help Pearl live to the fullest.  We will never be out of the woods, but our only option is not to sit around and keep her comfortable, as we were first prepared to do. Her team and we are working on a more pro-active and sustainable care plan and that’s so exciting!

Since coming home, Pearl has had several really good days. Her seizures seem to be less frequent, she’s tolerating the nasal stint better, and she’s resting better. It seems that we’ve been on a never-ending roller coaster with her health and our emotions, but this week is going well and we are so thankful!

Our life and Pearl’s story aren’t just about us. It’s a privilege for us to all be a part of God’s bigger story, and thank you for being so supportive with your love, prayers, food, donations towards a van and sweet honest letters to Pearl (golly, these sweet letters mean so much!) It all means so much to us! Thank you for understanding if I don’t return messages promptly and for trying again, because I really do need you in my life.

Little Pearl has gotten a bit of press recently, and that blows me away. Eric and I are not very impressive people, so our lives don’t usually draw much attention. We have made decisions the only way we’ve known how, and we have been carried by the grace of God. We are often tired. Brennan and Abbey sometimes have to miss out on fun things. Sometimes I get so wrapped up in arranging details that I forget to soak up the miracle that is my daughter’s life. Yet we continue to be carried by the grace of God. He is faithful and we are grateful. Thank you for participating in the story God is weaving through our daughter Pearl, our family, and all of you. It is a beautiful thing.

I’ve been trying to go through some of the scriptures from Pearl’s quilt for some meditation lately. I haven’t been so good at just picking up the Word and reading lately, so I figured that the verses you all shared for her quilt was a good place to start. These few have particularly stuck out to me:

Peace I leave with you, my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.  (John 14:27, ESV)

The Spirit of God has made me, and the breath of the Almighty gives me life. (Job 33:4, ESV)

He is before all things, and in him all things hold together.   (Colossians 1:17, ESV)

May we continue to be an encouragement to each other!

Many thanks and much love,

Ruth.

My letter to Pearl: Who knew?

Sweetest Pearl,

How do I begin this letter to you, little soul who has fostered such growth in my relationship with God? How do I explain the ways in which His power in your life profoundly affect my spiritual walk, making my path straighter each time your name passes my lips in prayer? Words fail me and seem ineffective to convey the impact you’ve had on me and countless others.

And yet, words are exactly what drew me into your story, into your life—the words of our Father through your father. I wept and prayed over each email your dad sent, as he and your mom wrestled with the possibility of your death. Every line describes a depth of faith to which I can only aspire and recalls truths of God’s sovereignty, love, and hope that I lose sight of in any given moment. In early June, I received a message about you that changed me forever, a passage of which reads:

She, like the rest of us, will never cease to exist. There will come a time, maybe 10,000 years from now when we are all still existing for eternity, that her short life will seem no shorter than the rest of ours. In light of eternity, there’s not much difference between a 15-hour life and a life of 90 years. It’s all very brief. Her life doesn’t matter any less just because most of it will have been lived inside a womb. Her impact is no less either, if you will allow yourself to be changed.

At the time, your mom and dad still believed your time on earth would be only hours long and were “grabbing at straws with the hopes that Pearl’s life matters to others.” That email ended with a plea, “Be changed, be awkward, be uncomfortable, have a sleepless night or two, but by all means don’t close your eyes and wait for the ride to be over.”  God spoke to me through those lines. He told me to put on a show for you.

After some prayer and conversation with your mom and dad, that’s exactly what I set about doing—planning a celebration of your life. And it wasn’t long before the Nashville community joined in the effort. Stellar musicians donated their talents, friends contributed their time and resources, and many, many people lifted prayers for your family. Your blog arose in the process, and so the community widened. The words through which God called me into a simple act of obedience now touch lives of people you and I will likely never know. That is the power of your story, through which God is doing amazing things.

Ten days after the show, your life outside the womb began, and now, some six weeks later, I marvel at the miracle you are. In the moments I have the privilege of holding you, I remember again those truths about God’s sovereignty, love, and hope. I am thankful to have been called into your story, honored to link arms with your parents, and humbled to join the myriad prayers lifting your name up to heaven.

I am more grateful, compassionate, and patient for knowing you. Thank you for teaching me to be more like Jesus.

Love,

Suzanne

 {You can read more Letters to Pearl – or contribute your own – here and here.}

Letters to Pearl: a collective tale of hope

In the six weeks since her birth, Baby Pearl has made quite an impact on the world around her. In addition to her family and East Nashville community, Pearl’s story is being followed friends and strangers around the country and beyond. (Though it is true that with the help of blogs and Twitter, they don’t feel like strangers for long.)

Throw in a beautifully written article in last week’s Washington Times — that was then syndicated on several prominent sites — and it seems little Pearl is already changing the world. Pretty amazing.

Letters to Pearl {a collective tale of hope} provides a way for Pearl’s friends, new & old, to share her story with their world and to tell others, including the Brown family themselves, what knowing Pearl means to them. We would love for you to participate!

There are three ways to share your Letter to Pearl:

1. Publish your letter on your blog or web site. Link your post to this one via the “Click here to enter” link at the bottom. *Please link directly to the post with your letter in it (not to your blog’s homepage). The link-up will remain open until Friday, Sept 14, at 11:59PM.

2. Publish your letter as a note on Facebook. Post the note on your own Wall/Timeline, then copy/paste the note as a Wall post on the Letters to Pearl event page HERE.

3. Mail your letter to Pearl. Send your handwritten letter or a copy of your published letter to:
Letters to Pearl
c/o Eric or Ruth Brown
PO Box 160083
Nashville, TN 37216

Thank you for sharing your part of Pearl’s story.

Click here to enter your link and view the Letters to Pearl link-up list…