One Year!!


(the above photo was taken on Pearl’s first birthday. The sparkle in her eyes has returned!)

So, yeah…What a year.

We celebrated Pearl’s first birthday this past weekend, at a park in the shadow of Vanderbilt Children’s Hospital. What an incredible celebration! Several dozen of our closest friends gathered to help us celebrate and it couldn’t have gone any better! It was a beautifully simple time of meeting new faces, catching up with old ones, and sharing in the food that everyone brought. The Tennessean ran a little update about the celebration this week, too! Thank you to everyone who came out and thank you for those of you who had a hand in helping pull this thing together. Thank you also to all of you who couldn’t make it but filled our mailbox with goodies, cards, and letters. You all made us feel like the richest family in the world!

Pearl is doing really great. After a couple month stretch of wondering if her little body was telling us that it’s too tired to fight anymore, she has once again turned a corner and is thriving. She rests really well, and is showing signs that her body is getting stronger! Her seizure medication doses are beyond the scope of what she should be able tolerate according to her weight but once again, she pretty much plays by her own rules. We’re grateful for a medical team that permits her the liberty to do so. When it comes down to it, it’s much better for her to sleep from the medication than to have the seizures continue to wreak such havoc on her body. We’re a long way from where we were on this day last year, still camping out in the NICU… folks coming in from all over to meet her and to share their story of how God had used Pearl. All the while we were staring at something called a pulse-ox that sounded the “hey, guys…she’s not very stable right now” alarm every 3-4 minutes. Little did we know that a year later, we’d still have one of those monitors in our living room and that these days, the alarm would sound much less frequently!

There’s also a feeding pump, oxygen machine, suction machine, and enough miscellaneous tubes, bags, and syringes to open her own medical supply chain. She’s outgrown her little basinet in the living room corner, and we’ve finally ordered her a quasi-hospital type bed. It’s pretty massive and when we ordered it, we were thinking we’d be able to get the loan for a home addition to give Pearl a bedroom/bathroom with wheelchair accessibility and room for a lift. Well, the bank didn’t quite see it the same way. Since her equipment has overtaken it, I guess we’ll now officially call the living room, “Pearl’s Room”. What a beautifully frustrating problem to have! We’ve certainly learned over the last year that nothing about the special needs life is ever easy but that everything is okay, and it could always be worse. It’s been a year of learning contentment, trusting God, striving for gratitude, and learning to not kick back against the times when God says, “no.” Abiding in Christ, as the kids say. That’s what we’re doing on the good days.

The other days are a little different. I suppose this last year has felt a bit like being pushed through some sort of instant callusing machine. Last year, this time, we were a couple of tired, wide-eyed kids, jaws on the floor, staring in awe at what God had done by even giving Pearl a single breath. I can say with a clear conscious that last year, we had no idea what tired really looked like!! I suppose in many ways, we’ve become a bit hardened by life at this point. After a year of thinking over and over that your daughter is nearing the end of her life, only to watch her get better yet again, you become a bit war-torn and tattered. That stuff will beat you down. Maybe that comes across in my writing, or maybe it’s apparent by my lack thereof. I suppose our fruits of the Spirit have developed some “bad spots” and have been nibbled on a bit by the bugs and worms.  Maybe our fruits sat out in the sun too long, or maybe my metaphor has become too longwinded. Everything’s fine, but I think it’s impossible to go through a year like this and not be changed, at least somewhat, in these ways. It is to be credited to God that we aren’t as bad off as we could be.

His continued presence, sustenance, and sustainment are unmistakable and evident. He lets us go to the dark recesses of our hearts, but always just for a moment before pulling us out, kicking and screaming, and showing us the beauty of his goodness. Though the fresh winds for our sails used to blow quite frequently, those winds have been fewer and farther between for quite some time now. In a way, I’m somehow grateful he allows us to wander. It is always after those seasons that his grace and goodness become all the more evident. Maybe he allows the noise so that when the clarity arrives, our hearts perk up.

Most days, it feels about like it actually is… We’re all wandering around this place that is hardly a caricature of what it was supposed to be. Frustrations grow, difficulties increase, and we find ourselves looking for new leaves to overturn, hoping that this or that will give our souls rest and help our hearts find peace. In actuality, all of these newly overturned leaves end up just like Leah in Genesis 29. One day, we’ll wake up and it will be Rachel, but not today. Maybe these symptoms are a little more severe when you have a child with holoprosencephaly, but maybe not. It sure seems that they are, but I know that we’re all under the same curse, we’re all toiling for the same thing, and we’re all frustrated by the lack of ease of life. We’re all trying to hang on, though sometimes only by a thread. I’m grateful that Christ is stronger still, and security relies not on our ability to hang onto that thread, but instead on his inexhaustible grip on us.

21 thoughts on “One Year!!

  1. Beautiful thoughts, Eric. I think about you all a lot and marvel at how God has given you the strength and ability to handle ALL of this. Truly a testament to His grace and provision. Thanks for sharing…really wish we could have been there for the party!!! Her red hair makes me smile so big!

  2. We’re all still praying for you. And if anyone of us following your family wins the lottery, the first thing we need to do is buy you a bigger house. I SO wish things were easier for you.

  3. I remember Pearl and you in my prayers every day. I live out of the area but I was thinking of you on her special day last week. I enjoy the updates and learning about how you all are thriving. Praise God for his blessings!

  4. May you be blessed with another year of watching Pearl develop and that you will be blessed with the power of God to help her through it. We continue to pray for your family.

  5. Thank you for sharing Pearl with us- she is awe- inspiring!! God Bless Pearl and her family. What a blessing!! Btw she is beautiful!! Love the red hair and beautiful skin!!

  6. I feel very blessed that I got to meet Pearl and her mom today at chick fil a .Pearl is so precious and just amazing..prayers,hugs and kisses…sherry

  7. +
    Happy Birthday beautiful Pearl! And thank you parents for your honest and inspiring post. The last few sentences especially meant a lot to me: “…we’re all toiling for the same thing, and we’re all frustrated by the lack of ease of life. We’re all trying to hang on, though sometimes only by a thread. I’m grateful that Christ is stronger still, and security relies not on our ability to hang onto that thread, but instead on his inexhaustible grip on us.” Amen!

    May God continue to bless and strengthen you in His Love, trusting in Him, keeping your eyes on Him! Please pray we all do the same thing!

    In His Love,

    Jan England
    Antelope, CA

  8. Your grace brings me peace when I wish oh so much I had words of comfort for you. Pearl is doubly blessed to have you for parents. Once again I find myself tired from compare and yet you bring a smile to my face. Thank you for sharing and know that there are others of us that travel our own bumpy roads with our own blessings. prayers from Atlanta Ga.

  9. HAPPY 1ST BIRTHDAY PEARL!!!! I pray that things continue to grow positive for you and your family. God bless you little miracle!

  10. Hello Brown Family!
    I have been following your blog since March 10. My granddaughter, Hannah Rose, was born on March 6, dx with Alobar Holoprocencephaly. Found your blog while researching on the web. Our baby girl was sent home after 3 weeks at the Winnie Palmer NICU in Orlando, FL with Hospice, a big ole bottle of morphine and a good luck pat on the back to my daughter and her husband. Given possibly 2 weeks to survive, yesterday marked her 22nd week of life. Your story shares so many similarities to ours….so so many! And Pearl’s and Hannah’s physical features are very much alike. Hannah’s MRI’s were re-evaluated at the Carter Center also, and she too was given a slightly better??? dx of Severe Semi Lobar HPE.
    Many, many seizures throughout the day….and medication titration such a tedious thing.
    Anyway…. I have been reading your beautifully written and inspirational blog, as have my other family members, and just wanted to say that Pearl gives us so much hope!!! I have been watching with bated breath …..waiting for her 1st Birthday! What a glorious day it must have been I can only imagine!!! Such a beautiful baby girl!!!!
    This life situation has been and continues to be such a testing of our faith. Badly shaken, but still intact in our camp. Our Great God has already given us 20 weeks more than we expected….. and each day we just pray for one day more. Hannah continues to amaze her doctors, and we pray she continues to do so.
    Just wanted you to know that this family in Florida keeps yours in it’s thoughts and prayers and rallies on for Pearl Joy!!!
    May Our Almighty God give you and your family peace in your hearts today…. and a good nights sleep tonight 😉
    Teri Allen

  11. Your posts are always so uplifting and heartwarming. What a special girl who has been blessed with a special family. May God continue to give you all the strength you need and many more happy times as a family…….

  12. Having cared for another Holoprosencephaly child, who was also born a year ago July, I am somewhat aware of the highs and lows you are going through. Our little one also had the severe seizures and passed at nine months old in March. It is difficult to see their tiny body’s go through the seizures and the toll that the day to day meds take on their bodies. We all seem to agree on the work that these babies are doing for the Kingdom of God. I, also, wish I had been present when our little girl entered Heaven and was shown all that her 9 months had accomplished. I would also love to see our little one and Pearl together one day on some big Heavenly playground comparing notes and playing together. Enjoy each moment, good and bad, and know that Pearl will do more for the world in her life than most of us could ever even imagine. May God continue to bless your family now and always..

    • “We all seem to agree on the work that these babies are doing for the Kingdom of God.” I love that. These little ones are surely changing the world, fighting pessimism with the audacity to keep on living and showing the glory of God in frailty. P.S. That red hair is perfect for Pearl! P.P.S. Continuing to pray as I hear from Amanda W’s post that things are rough right now.

  13. Have never commented before, but have followed you all throughout your year. CONGRATULATIONS & HAPPY, HAPPY Birthday little doll!! She is just as precious as a cabbage patch doll. Actually, that picture is the most darling pic of her…right next to the one where she was born, gripping those adult fingers. And, even if we cannot relate to having a sick baby, you surely are a good writer. This last post, like many of yours, was spoken so eloquently…and oddly, very relatable with the words you chose. Many blessings, well-wishes, and hugs to you and your family. It’s true when someone says you were a chosen family for this beauty…you all are making a wonderful mark in this world & into many people’s hearts. THANK YOU.

    • Yes, it has been awhile! Sorry about that. We’re all doing fairly well, and I will try to post in the next couple of days. As life got busier and busier, this blog was the first thing that got pushed aside. Rest assured that sweet Pearl is hanging in quite well, though!

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