Sunday, September 30, 2007

home

Here is the video from the memorial service yesterday. Conor's good friend Jason Ingram wrote the song for Copeland on the night she went to be with Jesus. We are grateful for every second we spent with our sweet girl. This is an amazing opportunity to share with you some of the most precious moments we had with her while she was here. Below that is the letter Conor and I read to Copeland during her service yesterday. Thank you, to everyone, whether you were there in spirit or physically. We felt your presence and we were so uplifted as we walked through one of the toughest days of our lives.

Be blessed...



Dear Copeland,
On the day you were born, we had prayed for you for two years. You were the answer we had been waiting for – with one exception. You were more. You were better. God truly poured out one of His greatest blessings on our family when you came along.

We knew that you were going to be with us only a short time, but we didn’t realize it would be so short. Who can prepare their hearts to lose what they’ve ached for, what they’ve found a piece of their soul to be knitted together with? As we write these words, we know you are with our Father. We know it in our heads even though our human hearts struggle to comprehend. We believe because Jesus came and lived and died an unfair death that you are with Him now, waiting for us, who will be with you one day. Never before have our sights been set on heaven as they are now. Never before have the things of this world been dulled as they are now. We long to see you… we long to rock you, to kiss you, to watch you grow. But we will plant our feet firmly on the knowledge that those longings will not go forever unmet because we rest in the promise of Christ.

Copeland, before your birth, we had no idea how much we would love you. We are so grateful for the time we had to be your mommy and daddy here on earth. We pray the Lord will strengthen our minds to remember the precious moments He granted us with you: your delivery and Daddy’s “thumbs up” when you began to cry, sharing you with the 60-odd visitors who flooded the waiting room upon your arrival, staying up through the night with you at the hospital while Daddy and I talked about how much we had been changed just by your coming, taking you home in your carseat for the first time, laying you in the crib we thought you would never even see, rocking you, singing to you, reading the Psalms over you, changing your tiny diapers and your tiny clothes, taking you to Sellers’s school so your new big sister could show you off, even keeping vigil over you through the last nights as your breathing grew heavy. I know we both count it as a privilege and an honor to have held you in our arms until the Lord chose to take you home to Him. We believe with hope that you felt carried the whole way.

We are not sure how we will go on. We will miss you so much our hearts will be near to bursting. We will long for you and wonder where you are. We will think of you every day, every hour, and ache to recreate the moments we had with you this side of heaven. But because we know you are there… we will walk. We will carry your sister, and all the other siblings the Lord chooses for you to have. We will honor the way you have changed us and the thousands of people worldwide who came to know your story by choosing each day a life that looks differently, a life that says, “Thank You, Jesus, for reminding us that heaven is real… You are real… and it’s time we learned to live like we believe it.”

We will never forget.

We love you.
Mama and Daddy

Friday, September 28, 2007

tomorrow

Well, here I go again. I can't seem to keep away from you all.

It's hard to believe our girl has been gone for 48 hours. I think about her almost every single second, something moms who've lost babies and children have shared with me... something I confess scared me... but something I find, now, to be strangely comforting. I stood in the mall today with my precious Sellers - we had promised her an "outing" and Pottery Barn Kids was her choice - and wondered what Copeland was doing right now. It's hard trying to grasp heaven, even for someone who grew up going to church and who should know enough to substantiate it. I just feel a little uneducated. Aren't we all? I suspect that losing a loved one does one thing for certain in a soul: you must decide, right now, for each moment, what you believe. No more of this silly blithering on about God and Heaven or even Jesus if it's not going to mean anything when you need it most. I have to choose. Is it real? Is it going to be real in my heart when I can't see through my tears? And does accepting heaven mean accepting everything else the Bible says? That there's also a hell... that without Jesus, none of us can get to the Father? Yes. I cannot take one without the other. I thought of the verse that says, "Store up for yourselves treasures in heaven." I looked at all the cute little doo-dads in Pottery Barn Kids this afternoon and part of me ached for the fact that I can't buy those things for Copeland. And then part of me realized how she would laugh, too. Laugh because the treasure - the real treasure - is Jesus. And she's as filled up with Him as any of us can ever be.

Tomorrow is the memorial. As Conor and I dug in our closets to find the right things to wear, it seemed strange to be pulling tops and skirts out in preparation for this day. Like I've said, we knew it was coming. But I find it odd that we are fast-approaching that moment, the moment these months of walking and crying and laughing and praying have metriculated into. The real moment of victory was the moment Copeland left us, but I know she would understand - and so would the Father - that for all of us here on earth, tomorrow symbolizes our letting her go. And I pray each day that I would love Copeland and Jesus enough to do that.

The video the church put together is astounding; I will post it here as soon as I get the chance. I wanted to share with you something about one of the songs we've chosen for the service. We should have some footage of that, as well. The opener is a song called "Every Road" by Amy Grant. The verses are definitely more "husband/wife" oriented... words that discuss leaning into each other when it would be easier to pull away. For some reason, this song has been on my heart since the evening Copeland died. I sat and listened to it for a while after she had left us and realized the chorus spoke to me in a way I hadn't realized I needed: "Every road that's traveled teaches something new/ And every road that's narrow pushes us to choose/ And I'd be lying if I said I had not tried to leave a time or two/ Every road that leads me, leads me back to you." I love these words. Conor and I were on a road trip once driving in Colorado. As we listened to this song, I realized that I wanted every road I took in life - every heartache, every joy, every moment we'd share that would either send us dancing or to our knees - to lead me back to him. I realize that, ultimately, that's what marriage is - and that's what our relationship with the Father should be. Just a winding, rocky path that requires only one real thing from us: that we keep coming back. I want Copeland and Sellers and all the children we ever have to know that they can rely on that fact: we'll keep coming back. Both to each other and to the Father. We're committed to it.

I pray if you can be there tomorrow, you will be blessed. I pray the songs and the words and the pictures and even the person sitting next to you will make a mark. We are so anxious to share what we have been filled up with.

Thursday, September 27, 2007

in her honor...

So many of you have asked how you can honor our sweet daughter and we are tremendously blessed by that. We have a couple of options that we feel truly represent our family. Please read the e-mail below to fully understand the first:

"It is one of God’s greatest blessings for us to be able to celebrate His sweet Copeland’s life! In our new library, slated for completion in the spring of 2008, there is a large window—the visual, physical, and spiritual 'center' of the library. In this window, there is to be placed a window seat; a place that seems to all of us who love to read like a big hug! We would love to honor Copeland by designating this window seat as 'Copeland’s Corner,' a place where every single day and every single page turned is a celebration of her life. A fund has been set up in her honor."

Boothe attended Oak Hill School here in Nashville from kindergarten until sixth grade. It had a tremendous effect on her faith and allowed her to blossom spiritually in many ways that are having a major role in how we will get through this season now. Oak Hill is a part of a church here in town that we were fortunate enough to be married in back in 2001. So this is a place that means a lot to our legacy as a family. Please send donations for this fund to:

The Oak Hill School
Re: Copeland’s Corner
The Oak Hill School Library
4815 Franklin Road
Nashville, TN 37220

Contact Claire Wilkins at 615-298-9543 for further information.

We understand that many of you may not know about Oak Hill and may feel more comfortable with something a bit more global. Therefore, we have also decided to set up a fund to assist International Justice Mission, a non-profit organization that seeks to work out injustices and set free captives around the world, including young girls in sex slavery. Knowing our Copeland is free even as we speak is a great reminder that we are all ultimately called to a life in heaven where the 'chains' on this earth have no bearing. We believe that it is our duty to seek the Father's will for all of His children, "on earth, as it is in heaven." Please send donations in honor of Copeland Farley to the following:

International Justice Mission
PO Box 58147
Washington, DC 20037

You may also give online; if you are interested in this option, please visit their website at www.ijm.org and select "GIVE" from the menu at the top of the screen.

Blessings this day... we are making it through because of you.

Memorial

We wanted to let everyone know that plans have been made for a memorial service celebrating our sweet girl's short life. Details are below... anyone is welcome.

Saturday, September 29th
1:00 PM (CST)
Fellowship Bible Church
1210 Franklin Road
Brentwood,TN 37027

Please visit Fellowship's website for more information on their location: www.fbctn.org.

In lieu of flowers, Boothe and I have chosen two ways for those of you who are interested to remember Copeland. More details on these will foilow shortly.

We love you all and so appreciate your words. We are in awe of the way the Lord has used our story and our precious daughter, and we look forward to continuing to see His hand move.

Conor

"hey"

It is 8:15 in the morning and by God's grace, I have only now just gotten up. I felt compelled to write something, though I can't say exactly why. People asked me before Copeland was born what I would do with this blog after she was gone, and I didn't know then. I still don't totally know now. She was the heart of the reason why I ever sat down to write anything at all. But ultimately, the Lord has used what He gave me to glorify Himself in mighty ways, so who am I to decide 'I'm done' when this is really His in the first place? He has given me an urge to write; it's almost like without pouring out my heart I remain pent up inside with the ache all the more voracious.

i confess I'm still in a bit of shock, knowing that she's gone. The funeral home came and took her later in the night, so we had some sweet time even after the Lord had called her home. I have to keep reminding myself that from the moment she passed, she was no longer there - the body I so loved to cradle, the cheeks I loved to kiss, even her tiny nose that, no matter what I did, I couldn't keep warm enough - they were no longer her. To say she is in heaven is so cliche to me; it feels somewhat like being told, "Oh, but here's the good news: though your child isn't here anymore, she's in Never Never Land. Don't worry." Though my faith is real, and I do believe, it was all I could do not to chase the car last night as it pulled out of the driveway taking my angel away. Later, in the house, I felt as though I would crawl out of my skin wanting to get my baby. I had been told of this panic, but I hadn't expected it, not really. After all, we've known this day would come for 3 months now. But nothing... nothing prepares you to willingly hand your child to a complete stranger knowing you'll never see them again.

i don't mean to sound morbid or even to depress anyone, although I know I'll find it hard at times to smile or to simply 'go on' as normal, despite the absolute necessity of that at some point. I remember thinking last night that I can't believe I actually fall into the category of people who have endured one of the hardest things life can hand someone. It doesn't seem real. And yet that word - endure - stands out and reminds me that somehow, as I sit in the darkness of my bedroom and hope I have the strength to face Copeland's bassinet in the kitchen, I realize that God is giving me what I can't give myself, what even no amount of Bible verses fail to give were it not first for His Spirit imparting to me an understanding and a thirst for Him. I confess I long to understand - to believe - in what I can't right now. I long to believe heaven is real, that my girl is being rocked by caring, loving arms, that she is absolutely healed from the effects of her cruel disease and that never again will she be hungry or frustrated at her inability to breathe. That she will look on the gates occasionally, waiting for her mommy and daddy to appear. My conversations with God right now are more like those you have with a junior high boyfriend as you pass them in the hall at school: necessary in order to remain in a relationship, but short, probably somewhat insignificant to any on-lookers. "Hey." That's about all I can muster at this point. What do you say to the God of the universe who chose not to heal or save your baby? Who, though they are giving you strength to endure, moment by moment, actually allowed the situation that require endurance in the first place? I call on you to pray for me. I will not turn my back on Him. But words fail me.

Wednesday, September 26, 2007

homecoming

Just wanted to let you all know... we lost our precious girl tonight at 5:35. We knew the end was coming... she had a very difficult day and we were anticipating it, but nothing can possibly prepare your heart for something so hard. We are clinging to the knowledge that she is no longer suffering but is in her Savior's arms. Our time with her in heaven will be so much greater and so much more special than even the most incredible days we've spent with her here on earth. We are so thankful for every memory the Father gave us. I will never regret a single second spent as her mommy.

Sellers and her Daddy spent some time outside on the back porch talking, so she knows. Thank you for your prayers and for your sweet encouragement.

We love you all...

update

I went to work for a bit today to try and catch up on some things and while sitting in a meeting, Boothe's aunt called to tell me I needed to come home because things looked bad. We took Copeland with us this morning to the doctor's office where Boothe had some follow-up done (for the c-section). Copeland seemed to do well through all of that, her color stayed relatively pink. But over the course of the day, we are definitely noticing her weakening. We have known it all along, but the physical reality that she is going to be leaving us soon is hitting home with each passing hour.

These are some of the things I never knew we'd have to deal with. Going back to "normal" life, in some ways, and trying to remain as routine as possible, while my daughter is literally on the brink of death. And not knowing how long that process will take.

Please continue to pray for our family. Pray that I will love Boothe and my girls well. And please pray that the Lord wil postpone the hour of Copeland's death until I can get home, if, in fact, I happen to be away. I want to balance working with being here with the girls. I feel compelled to provide as the spiritual leader in our family, and sometimes it is tough to even begin to know how to do it during this season.

We're still touch and go... we will continue to keep you updated.

Conor

8:30 a.m.

I was woken this morning by my aunt, leaning into my room to tell me that Copeland was looking blue. I had no idea what time it was - my mother, mother-in-law, aunt and grandmother had all taken shifts watching her through the night - and as I headed upstairs, all I could think was, "This is the day. We've had her for over a week now. This must be the day." Indeed, as I went to Copeland and picked her up, her color, while not as drastically blue as before, had faded. Most frighteningly, her breathing had stopped. Completely. On occasion she would let out gasps for air, sweet little cries, but on the whole, things looked dire. She hadn't eaten in about 12 hours. Conor's mom has been gracious to use a stethoscope lately and do what I don't think he or I could (whether due to lack of skill or heart): listen to her heartrate and help us gauge where things are in this whole journey. Copeland's little heartbeat seems to be relatively strong - I say 'relatively' because we are certainly watching things slow down. As we sat in the same living room I wept in only yesteday morning, I found myself screaming at God, agonizing that this could not be the time, this wasn't the moment Conor and I have prayed for.

God seems to have heard our cries for now... she is still here. But her breathing is slower, shallower; her color is definitely weaker, and her heartbeat is fading. Had I the ability to predict whether or not this episode were a 'milestone' on the direct path to her death, I would tell you so. But I don't. We go back into a place where the steps in front of us are as obscure as they have ever been. We simply ask you to pray that we will be somehow, someway, prepared to let her go. Watching her struggle may be God's strange way of giving us the ability to hand her more willingly back to Him: we can hardly bear to see her fight for life anymore. I have whispered over her in the last few minutes, just as Conor has, "Sweet girl, just go. We love you... we're so proud of you. You've fought so hard. But you don't have to fight for us anymore. We want you to be free."

I believe the Lord gave me a vision this morning of His angels, standing guard over our family as we wept over her, ready to take her to the Father when He commands. I believe when they are sent to take her, the moment she enters His arms, she will be made perfect and complete: that were we given the spiritual eyes to see, we would know that while we hold a fragile, broken body, Jesus is taking unto Himself a child who is always breathing normally, whose cheeks and lips remain flushed with joy for life, whose heart is strong and vigorous, who has been given freedom from the incredible chains this fallen world has set upon her frail form.

We love you all and will continue to update you throughout the day...

12:30 a.m.

Just wanted to update quickly: we are preparing for bed tonight - my mom and I are sitting up talking, while Conor's mom rests so that she can take the next "shift" and keep an eye on our girl - and Copeland is having frequent "blue spells" again. The last resulted in several seconds where she stopped breathing altogether. Please pray for her tonight... that she will make it through. It is almost unbearable trying to "wake her up" when she is so gray and colorless, her eyes are glazed over... as a mommy, I don't know how to keep my panic from surfacing. Please pray the Lord will breathe life into her lungs and that we will be able to remain calm if, in fact, we have to deal with this again in the next few hours. This has been a pattern today, so my fears are definitely heavier as far as Copeland making it through the night. It is hard not to be anxious.

Tuesday, September 25, 2007

happy birthday, copeland!




Tonight we celebrated with some family as Copeland turned exactly one week old! It was a really special time... my cousin baked a delicious cake, my mom bought a precious little birthday hat for Copeland to "wear" (we think it's actually meant to accentuate a gift bag!) and Sellers even wore her "Big Sister" crown from school.

I can hardly believe we've made it this far... and yet with each passing day, it's harder to imagine that we are getting closer to the end... whenever the Lord has ordained that. We are preparing for a restful night and hoping Copeland will continue to remain pink and breathe well.

Blessings...

Boothe

thank you

Copeland is sleeping soundly in her bassinet and has been for almost an hour now... she's finally getting some of the alone time I think her little four-pound body desperately needed. Perhaps all the passing around really meant a bit of exhaustion for her! As for the pink cheeks and lips... your prayers are being felt here with deep gratitude. I stand in awe at a God who will use something as mindless and irritating as the internet can often be for His glory - to amplify His name above all the earth and remind us that if we will but call to Him, we can expect results. We are not always sure what they will look like, but we can be assured they'll come, some way or another. For now I am rejoicing in my daughter's sudden blush!

baby blues...




Some photos from our day thus far...

Sellers feeding her baby sister her bottle this morning... and Copeland in her carseat with her enormous pacifier. Almost everything in life seems to be enormous in comparison to our tiny peanut!

Still doing well... Not to seem presumptuous, I just wanted to give you all an update. And to ask you to pray for these "blue spells" I keep mentioning. This would definitely fall into the "specifics" category, I'm sure, but I feel a little more at peace with praying for specifics than I did, say, about 36 hours ago. Guess that's what defines much of our spiritual life: constant ups and downs. I'm so thankful that the Father isn't as inconsistent in His ways with us as we are with Him. Copeland has her "good" days and her "not-so-good" days and this has been one of the latter, at least from the perspective I've kept in watching her color change. We are always hopeful for pink cheeks and lips - signs that her bloodflow is strong - and often we'll have that for hours at a time. But honestly, today has been a tough go of it, and I would ask you to lift up our girl and ask specifically - there's that word again - that the Lord would begin to slow the frequency of these blue spells and help her to breathe. It's been a tough day... not as much vigor as we'd like to see her with. Please pray right now for her health and for her life... that God would restore her moment by moment.

one week ago...

I am sitting in Conor's office, listening to his co-workers wander in and out so that they can get a peek at our girl, and it astounds me that we have actually reached Copeland's one-week birthday! In about an hour, she will have been alive for exactly seven days. Astonishing.

I wanted to let you know we are doing well... we took Sellers to school this morning, showed Copeland off to her teachers and friends (they even made her a "Big Sister" crown to wear throughout the day!) and then headed off to run some errands and spend some quality time 'just the three of us' - Conor, Copeland and I. I am soaking up each and every moment I have as her mom... to get to share her with people who I know have been praying has been absolutely incredible. Everyone marvels at how tiny she is, at how perfect she looks (despite the fact that Trisomy-18 definitely has made its 'mark' on her, she is in many ways just a miniaturized version of a normal, healthy baby). There have been a couple of moments when the "blue spells" returned and my heart fell, thinking perhaps that would be the time the Lord would call her home. I pray each day for more time with her, but I also recognize the very real probability that each day could be her last. Each moment, even.

Conor and I prayed specifically for joy last night. I guess somehow in the middle of all of this, I'd forgotten that if I prayed for the ability to smile, to be able to look past - even ignore, to some degree - the imminent sadness before us, just for today, God would be faithful to answer. I know you are continually lifting us up, as well, and I want you to know how thrilling I find my position in this life to be right now. To put Sellers to bed, to wake her in the morning, to sit up late and talk with my husband about both the heaviest and silliest of subjects, to rock Copeland in my arms and just let Jesus give her each breath - all of these things fill me up so immensely that I find it hard to express. I never want to look back on this day - or the days ahead - and feel that I squandered the gift the Father is giving me.

Happy one-week birthday, Copeland... it is by the grace of the Father and the loyalty of the saints that you are here with us today.

Monday, September 24, 2007

good night

Deat sweet family and friends...

Well, we made it through another day and our sweet girl is about to begin her third night away from the hospital. Words fail me... at times I am totally in agony watching her, wondering.... and at times I am filled with deep joy, encouraged that no matter what her physical features might indicate, God seems to be working with every single cell in her body and doing what He always set out to accomplish with her.

I am in awe, repeatedly, at how many of you are reading these words. I simply can't understand it. God has always given me a desire to "reach" people for Him, but in this situation, under such difficult circumstances, I can honestly say I am not like Paul... I don't feel thankful all the time to be used by Him and I don't always appreciate the incredible testimony I know He's writing in our lives right now. But hearing of how Copeland's life and our story have affected you is like a balm for my soul. It is the only thing that in any capacity can justify how much pain I feel for her and the pain I believe we may still walk through. Thank you for sharing what Jesus is doing in your lives. Please pray He would continue to fill us up - to give us joy. I find that I often focus on how hard things are, how sad I am for what will never be, instead of reveling in the incredible experience I'm being blessed with as both Sellers's and Copeland's mommy. Not to mention Conor's wife. It is almost too much to process. Please pray that we will be able to enjoy this path. That the darkness will allow us to see the light we might have missed had things on our journey always stayed sunny and upbeat.

I am much more at peace tonight as we head to bed than I've been since we left the hospital. We have loads of family here who have graciously volunteered to watch Copeland and rock her while Conor and I sleep. I am so blessed.

See you in the morning...`

out of the mouth of babes



Praise the Lord for my sweet sister. I guess that's truly what a sister should do - bear your burdens and help you to get through. I am so thankful you all got the update you were looking for and that you might be able to feel some peace, along with us, that for now, we have our precious girl. I apologize for not being as committed today to writing as I've been; I think the exhaustion from last night has set in and despite the rest I got this afternoon, I'm feeling less and less energized.

I did want to tell you that the Lord has used Sellers in a mighty way today. When Conor brought Copeland upstairs this morning, she was anxious tp hold her baby sister. She did, in fact, come in our room when we were just waking up and asked if she could see Copeland. Although she's shown some interest in her, Sellers has also been a little reluctant to embrace the whole "new baby" idea... I think this is largely due to the fact that for so long, we prepared her that Copeland wouldn't be coming home. That we wouldn't change her diapers or feed her. We wanted her to be as ready to let Copeland go to heaven as we felt we would be. That strikes me as a little bit of a joke now. But we did what we could at the time! Last night, Sellers went to Conor and asked him if they could talk. She wanted to go and sit in a couple of armchairs downstairs - this was a specific request - and when they got there, she looked at her daddy and said, "Daddy, why does Copeland have to go to heaven?" He explained that she was sick and that Jesus would heal her completely, that she would get to run and play and do all of the things little girls should be able to do when they are healthy. We have been talking a lot about salvation with Sellers and what Jesus did for us on the cross, and Conor reminded her that when He died, He saved and healed all of us and that if we will believe this, we can go to heaven, too, because He loves us that much. She seems to supernaturally "get" this as best as a 3 year-old can.

I am deriving such strength from the way she's handled thnigs with her precious sister. I clung to the countertops in the bathroom today, I guess in the midst of a slight anxiety attack, and cried out to God, "How do I let Copeland go while at the same time try to mother her? How can I love her this deeply and still allow her, every single moment, to have the permission to leave me when You call?" Sellers seems to understand that her sister won't be with us for long but that while we do have her, we are called to love her and to make her happy.

We did get a visit from hospice care this morning and to his credit, Conor handled the situation much better than I could have. They are the ones we'll call when Copeland does pass, and they are the ones I will ultimately have to hand her precious little body over to. I hate them in a way. Sellers sat in the living room with Copeland in her arms, daintily stroking her cheek with the corner of her silk blanket. She looked up at me and said, "She loves it when I rub her cheeks." I sat down beside her and watched as she loved her sister for me, as she poured out her little heart and soothed Copeland when I felt so in despair that I didn't know how to. Then, she reached up and lovingly stroked my arm for a few seconds. "It's gonna be awight, Mama," were the words she spoke to me. How a three year-old can possibly know what her adult mother needs to hear I'll never know. But praise Jesus that she's been given something I cannot fathom, something I would no more give her the credit for a few months ago than learning to drive a car, and something I realize the Father knew I'd need from her so desperately that without it, I am weaker and less of the mother He intended for me to be.

from the sister

Since I'm related to this family and can call at any moment to check on them, but still am checking the site hourly for updates, I thought those of you who might not have the chance to call would like a little update. (And since Boothe and Conor gave me their sign-in info, I'm going for it!)

She's still with us!

I spoke with Conor about 20 minutes ago and his words were "she's doing good". Her color isn't back to where it was this time yesterday, but she isn't gasping for air or struggling - that they can tell. She's sleeping silently and seems to be doing better than last night. The hospice nurses came by today to check in on her and give a little comfort to Boothe and Conor, and all things seemed to be all right. The uncertainty of what the next hours will bring makes this news bittersweet, but lets us rejoice in knowing that she is still with us - not struggling and not hurting.

And can I also take this moment to tell you, first hand, how amazing Boothe and Conor really are as parents. They honestly strive to give their daughters the very best they know how and have thought of no one this entire week but their two girls. If we could all be as sacrificial and Spirit-led in the way we love our children, we would be amazingly blessed.

As you continue to lift up their precious babies, don't forget to mention them. Boothe and Conor are following where He's leading them and He is mighty to save. May He give them strength to walk through this journey.

love from Dallas
(no more surprise posts, Sis! I promise!)

just breathe

I woke this morning at about 6:30 having had a nightmare that Sellers came into our room wanting to see her baby sister and Conor and I telling her that she was gone. When I realized it wasn't going to be a nightmare, after all, but a reality we'd face, and perhaps soon, my heart sank. I was in a lot of pain - surgical - and needed to take some more medicine, so I climbed out of bed and began to head toward the door. That's when I heard Copeland squeal.

We are convinced that we lost her last night. She went totally gray, stopped breathing, and then, after she gasped several times after that and seemed to regain any strength at all, we simply imagined that though she might seem to be somewhat "back", these were simply stages along the road to death. Our neonatologists at the hospital had convinced us - albeit lovingly and with every ounce of knowledge about this process that Conor and I can't claim to possess - that things like gasping, breathing slowing to excruciating paces, and certainly the absence of any chest movement are all signs... death is upon us. We watched her struggle to breathe and then made the hardest decision we've ever had in our lives: to let go. We placed Copeland beside us, left the lights on, and rested. Our level of exhaustion was so intense that we actually bickered with each other before going to sleep - about nothing important, nonetheless. If you know Conor and I, you know we don't bicker... certainly don't fight. It sounds stupid, but for some reason we just like each other a lot and enjoy being together. Satan was so active in that room, the spiritual warfare so great, that it was all we could do to forgive and weep in each others' arms. I will count it as the most difficult night of my life.

Upon hearing our girl squeak from her bassinet this morning, my heart soared. And fell to greater depths than I can explain. We have let her go as best as we know how. We have said goodbye and given her to the Father. And now we are in a "wait and see" zone. The Lord may not take her for another day. Or weeks. How we ride the emotional rollercoaster of the unknown is absolutely beyond me. Conor was fighting mad last night. We're both mad. What is God doing? Where is He? I'm sick of trying so hard to honor Him and to make sure He is proud of me... only to feel my most specific and heartwrenching cries are not heard. And yet to find my girl alive this morning was the most incredible high I've ever felt. So perhaps He's answering prayers I've yet to pray... perhaps He's answering prayers I was meant to pray and didn't. I don't know. I sat alone in the morning sunlight pouring into my parents' living room earlier and the only words I could pray - maybe the only words I honestly felt I wanted to pray - were, "God, I can breathe. That's what I can do. Now I'm going back to bed."

I am not asking you to pray specifically for anything anymore. At least not at this moment. What I am asking you for is that you would pray God will have His way. That we will not live with expectation, per se, but with hope, certainly, and rest in Him. Pray we will be authentic in the anger we feel, even if that means we have some exchanges with Him that would make conservative Christians balk. I am convinced that if neither life nor death can keep us from the love of God, then certainly a few harsh words aren't too much for Him to handle.

carrying her home...

It is 3:15 in the morning. Conor and I are watching Copeland struggle for each breath as we lay side by side in bed, hoping that the Lord will intervene and give us all some rest. I confess to you that our prayer - right now - is that He will embrace us in His arms and take Copeland home to be whole, complete and healed. The last few hours have been agonizing.

After the last post, we asked a friend who's also a pediatrician to come by and listen to Copeland's heartrate. As I suspected, it was low. Even as she listened, the rate itself fluctuated several times, but ultimately kept returning to about 60 beats a minute, which, for Copeland, is much lower than the 150 we had left the hospital at just yesterday afternoon. In the time our friend stayed with us, it seemed our precious angel would continue to go downhill.

At about 2:00, her breathing slowed to the point that she stopped it altogether for about a minute at a time. Her coloring was so altered that I brought her into our bedroom and Conor and I lay on either side of her, wept over her, and prayed Jesus would come and take her. He still hasn't.

An hour later, we appear to still be in the "stages of death" that our neonatologist at the hospital described to us. We know that Copeland is not in pain, but it's the most difficult thing I've ever wtinessed in my entire life. We have talked for so long with Sellers about Copeland going to heaven, and while I do believe even now the Father can heal her, we are walking with hope in the Lord that He will reveal Himself to us in a fresh and mighty way tonight - not that she will defy science or statistics, but that she will be free in Him... and that Conor and I, in the Lord's perfect provision, will perhaps defy what the world says two young parents holding their dying child can never be counted on to do: sing His praises.

Blessings...

Sunday, September 23, 2007

8:00 p.m. Sunday

It is 7:45 and we have spent the last hour or so praying over Copeland. I decided to take her temperature to see if that was one reason she might be struggling and it was very low. It's still warm here in Nashville so we sat outside with her and wrapped her in blankets from the dryer and hoped just being away from some air conditioning might help. Her color is still what the nurses called "dusky." I am doing everything in my power to keep her warm and content, which she seems to be, considering she's sleeping in her daddy's arms right now.

I know you all are praying fiercely and I continue to ask you to lift us up. I pray constantly that the Lord would stir in your hearts and remind you of Copeland, which I know He is faithful to do. God has pressed upon my heart that if I will pray specifically, He will be quick to hear and answer. Before the last post, as I wept over her outside, I prayed He would fill her lungs with oxygen and cause her to breathe by whatever means necessary - I asked Him to make her cry. When we came inside, she was bundled, resting peacefully in my arms, and suddenly started screaming. I know He responded immediately to my prayers. I know He heard my words and mercifully answered the ache in this mother's heart.

And so, on that note, I would ask you to pray for several specific things until our next post: one, that she would keep crying, if necessary. That the Lord would wake her body up as often is required to keep her warm and to keep her oxygenated. Two, that the despair and helplessness I feel would be replaced by dependence on the Father and a rest in His absolute power and might. Finally, I pray against any work of the evil one who would seek to undermine Jesus' work in the middle of this strenuous time. I pray every purpose and plan He has for this incredible trial in our lives will prevail, that He will be honored and glorified, and that no weapon set against our family would prosper. We find rest in the shadow of His wings.

prayer

Dear family and friends,

I am asking you to pray specifically for Copeland right now. She has had a few more "blue spells" than we are comfortable with, they are lasting a bit longer than usual, and she's somewhat lethargic. Right now I am letting her cry as best as her little lungs will permit simply to ensure oxygen is rushing through her body. It could be a rough night. Please pray she will make it through. It is frightening and so difficult as a parent to watch your child suffer in any way. Pray that Conor and I will be strengthened.

photos






More photos of our night... the girls with their necklaces... our newest member and her big sister!!

the first 24 hours in the real world....




We've made it through our first night with Copeland. She had only a couple of her "blue spells" and, by the grace of God, we were able to handle them with relative ease. It's almost as though she is teaching us how best to care for her. These photos were taken shortly after we arrived at my parents' home. Sellers has taken to copying pretty much everything any of us does with her new baby sister - but with her dolly, Betsy. It's adorable.

My dad blessed all of his girls with beautiful sterling necklaces right before dinner. They are each hearts - Sellers and Copeland have the same and then I have a slightly different one. The emotion of knowing that we are all truly a family, and that sweet Copeland will always be a part of that, is amazing. Sellers was beside herself with hers and wants to wear it all the time. She felt so special.

Several of you have commented either on the blog or through e-mail about feeling a deep urge to pray that the Lord would give Conor and I wisdom about feeding Copeland. I wanted to include a photo of her eating - with a small bottle, nonetheless - so that you could see you for yourselves: she's doing it! When the nurse that came into our hospital room on Friday night at about 2 a.m. mentioned the possibility of giving her some formula, I later felt a strong urge from the Lord to breastfeed. I have resisted that idea from the day we learned of Copeland's condition, mainly because of the emotional tie I think breastfeeding can build between a mom and a child. I have wanted to guard my heart. But I did feel His prompting me and, upon sharing that with Conor, we decided I would use a pump and hopefully, if Copeland could successfully eat with a bottle or even a syringe (which has been a bit more fail-proof, as even though her sucking reflex is present it's weak) we would be able to feel like I was contributing in a special way to her life and that perhaps the Lord wanted me to go ahead and enjoy that bond with her while she is here. There is such a fine line in protecting oneself from emotionally-upheaving situations: the Bible says that we should "above all else" guard our hearts for they are the wellspring of life, but it also says the heart is deceitful. I pray for discernment, that the Lord would show me when I am making decisions out of haste and uncertainty, and when He is actually stirring in my spirit. I believe that night was one of the first examples of how He will guide me and give me what science might call instincts - but what we as believers can call movement by the Holy Spirit.

We are going on our first family outing today, maybe to the bookstore. In contrast to how I felt when we first learned of Copeland's diagnosis, I am aching for social interaction. Perhaps there's a part of me that longs to "show my girls off" together; perhaps I want to take Copeland to do and see as many things as we can while she's here so that each will be marked, in my memory, with her presence. There are so many emotions that I think a new mother of two feels, especially sadness knowing that the season with your first child alone is now over, but I waiver between sadness over that and sadness that, ultimately, we will go back to the three of us at some point. I want to soak up as much as I can with our foursome and simply live in the joy of that for today. In reality, none of us knows how long we have; it's a bit hilarious that with Copeland's diagnosis we actually feel like we can "plan" on something that is inevitable for all of us and yet can't really be pinned down. Please pray for time for all of us to bond, and for the time Conor and I can share as parents to our girls, that it will be blessed and truly annointed. Satan is definitely attacking as much as he can, and I know part of that attack includes overwhelming Conor and I enough to keep us 'shut down' in communication with each other, even if it's just as a result of lack of time to chat and look into each other's eyes. We will have to be diligent, for our girls' sakes, to make that time and make it special.

We love you all and are so blessed by the words you send. I sit in front of the computer quite often now and read your comments and e-mails and weep. The Scripture you send is incredibly uplifting. I need it. God's Word is truly living and active. It is the only thing upon which any of us can lean, for it will never fade or pass away. Many of you spoke words of encouragement regarding Copeland being ordained by God to be our daughter... that I was called from the beginning to be her mom, Conor her dad, Sellers her sister. You have no idea what that means, either. I'd forgotten it. Sometimes it's easy to feel like this was all random, despite my head-belief that God does pre-ordain things and has a plan. Thank you for reminding me that He's already designed me and my heart, as well as Conor's, to walk this path.

Saturday, September 22, 2007

home

I find it odd that the computer I began this blog on back in June is the same one I sit in front of this afternoon, officially a discharged patient from Baptist Hospital with my precious newborn daughter. Who would have ever thought it possible?

Copeland is doing well. We are going to spend a few days at my parents' home surrounded by family and also prayerful for the next few days. We are grateful.

We would ask you to pray specifically for:

1. Copeland's continued ability to thrive as best she can. Without support from the wonderful nurses at the hospital, I feel a little insecure about taking great care of her. Pray the Lord will keep fighting the battles for us; that I won't feel that as a mom I am responsible for understanding how to meet her every need. Only He can provide her with the things she truly needs, and only He can give Conor and I the wisdom to know what those things are.

2. Conor and I are exhausted. Lack of sleep definitely contributes to this, but there's a really draining element to having a child with any kind of special need. I often feel envious not of mothers whose children are 'perfect' externally but whose everyday routines are so easy. I'm one of those mothers, with Sellers. I have taken it so for granted that she will be able to eat and sleep without consequence from the day she was born. In stark contrast, Copeland's every activity seems like either a trial or a triumph. We feel the Lord has given us far, far more victories of late, but it can still be wearying wondering if the next endeavor toward normalcy we make will rob her of life. Each little detail of her day feels like it's 'touch-and-go,' and the constant uncertainty is definitely tiring.

More updates to come... perhaps a few photos, too...

Thank you for praying us home! It's still a miracle we never expected.

8:00 am saturday

Last night as I slept on a couch next to Boothe, I woke to see the nurses feeding Copeland some formula through a small dropper. She started taking a passy last night and did a great job with it, so the neonatologist figured she could try and swallow some food. So at about 3 am last night, our little girl ate about 2CCs of real formula and did not spit it up. The nurses are trying again right now so we will see what happens. It is another thing she is not supposed to be able to do To say that we are overwhelmed would be an understatement. Emotionally we are prepared for certain things and God keeps reminding us that His plan is greater. Our plan is to take her home around lunchtime and go from there - I cannot really put into words what I am experiencing right now, I just feel like I am not in control - which is good but so scary. What I do know is that God is going to continue to use Copleland to impact more people, just like she has me.

Conor

I wanted to add my own words onto this quickly. We are in a state of shock, to some degree, as Conor said... Copeland began to eat last night after we were told, unequivocally, that eating wasn't an option for her. The neonatologist who was on-call last night felt that if she could suck - and the passy we offered her has become her favorite thing - and was also enjoying the sucrose drops, there wasn't a reason we couldn't try to get her to eat a little something. After two syringes full of formula, which is a lot thicker than the sucrose, we are convinced that for now, the Lord has decided things should look a little different than we expected. Taking her home has become much, much less strenuous, and best of all: our precious girl is finally getting the sustenance I think Conor and I both suspected she was longing for. If, in fact, her esophagus wasn't connected to her stomach, the Lord healed that in a matter of days. We are in awe.

We understand that ultimately our little girl still has trisomy-18. God didn't choose to remove or change that diagnosis. But she's going home totally tube-free... no oxygen, no feeding tubes... as "normal" as a baby with her status could ever hope to be. We have no idea what to expect, but we are trying to embrace the facts - again, how we've coped for this long in some ways - while at the same time acknowledging God's incredible ability to suprise us with joy.

the road ahead...

Dear family and friends...
I am about to head to bed, but I wanted to let you all know where we stand... Thanks to my sister's post, I know you are aware we had another wonderful day with Copeland. Discussions with a neonatologist also gave us some peace about taking her home and sharing her last moments with family there, in a more familiar place, so as we enter our final night here at the hospital, I confess my hopes have changed somewhat and we look forward to the possibility of packing our baby girl up tomorrow for the ride back to our house. Sellers has excitedly agreed to show her baby sister her room, despite the fact that we know she won't be there for long. I know the Lord knows what is best and we are trying to trust Him in that. I know all of you can appreciate that it's hard at times.

Today was fantastic... as Chelsea said, Copeland rarely had a "blue spell," her temperature stayed consistently high, and her heartrate was strong. We felt blessed to share in her dedication with some family and friends. I will always remember our precious, precious time here in the hospital. These have been some of the best hours of our life.

It is hard knowing that in the impending days ahead - if the Lord grants us those with our girl - we wiil be facing some difficult moments. Trisomy-18 will continue to take its toll on Copeland's body and I know it will require a strength Conor and I certainly won't have without the Lord to face that head-on. There is just only so much we can do to alleviate her suffering. We continue to covet and appreciate your prayers, both to rejoice with us and also to cover us and lay us before the throne.

We love you all..
Boothe

Friday, September 21, 2007

another day - another blessing (8:30 pm)

Posted by Aunt Chelsea (Boothe's sister)

What a day of joy today has been. We all left last night uncertain of what the morning would bring - and praying that we would get a chance to hold and love Copeland one more day. However, we have still been praying all along that the Lord would take her if she was hurting at all.

It's been an awesome day to come to the hospital and all day long see Copeland full of color, breathing well, strong heartbeat and as precious as could be. Boothe and Conor have been filled with the joy of the Lord and we have all been able to spend the day smiling, loving the sweetest girl in the world.

At 2:00 today, our closest family and friends gathered with Pastor Don Finto and Pastor Jeff Helton to dedicate Copeland's precious life to the Lord. We all rejoiced in knowing that He has given us another day to love her and spend time getting to know her better. Sis and Conor were encouraged that they have loved her the way the Lord calls parents to love and have done all that is in their power to love her unconditionally. They have shown how much they love their daughter and proven that their desire is for the Lord's will to be done with her little life.

Copeland also had a visit from her favorite NICU nurse, who is in fact off today. Carly brought her husband by simply to see precious Copeland one more time. She was such a breath of fresh air and such a joy to see, as a surprise, one more day.

Today has been filled with surprises, blessings and most of all the joy of the Lord.

What a beautiful thing it is to have another day with our girl.

9:15 am

We are doing well... Copeland has had less of the scary moments she did yesterday and her heartrate, as well as body temperature, seem to be quite high and strong. Conor and I are still in the room alone, getting to spend some amazing time as parents by ourselves before family begins to arrive.

We were laughing this morning about Copeland's sweet little mouth and dark hair, both characteristics she shares with her big sister. It's wild to be a mom and dad with two girls... we will forever have the privilege of saying that, which is quite a thrill. Copeland looks like one of our babies, and that's also a thought that brings a smile to my face. She looks like us... she belongs to us... she always will.

7:00 am

Incredibly, Copeland made it through another night. As my mom and mother-in-law held her through the first hours, followed by Conor and then the NICU nurse, she had only a couple of "blue spells" where her body changed color dramatically enough to require a heartrate check. This elicited a few fears that she might be sliding back away from us. I slept through it all, somewhat to my frustration, but she is with us now in our room and seems to be doing as well as her little body can at this point.

It's hard to believe we are going on four days of life for our sweet girl, Our prayers, particularly after speaking with the neonatologist who was on-call yesterday, focus on enjoying Copeland through the rest of our hospital stay. We would love to see her go home to the Father when Conor and I pack up, too. The main reason we're anxious and hopeful that she will have one more good day with us here and that the Lord, then, will take her is that without feeding questions answered, taking her back to our house and trying to care for her would be beyond a challenge. We know the NICU could do a better job, but leaving her here wouldn't work for us emotionally. So knowing she could also be in heaven with the Lord, healed and whole, seems to be the most merciful option. We pray for it.

Thank you for loving us. Conor is holding her as I type and she continues to fight for life. I've thought several times of scripture a friend read over us the week before her birth, from 2 Chronicles, describing how the battle belongs to the Lord. Copeland's battle is God's, which is the only reason our sweet girl has made it this far. We have no idea how many more moments He's ordained for her, but we trust He's already set into motion the victory and is preparing a place for her with Him.

Thursday, September 20, 2007

going on 56 hours

It is 8:45 and we are preparing for another night of mystery with Copeland: it's a total toss-up whether or not she will continue to breathe on her own, whether her heartrate will remain strong, and whether she'll rise above the possibility that both might not happen consistently. She's been quite the fighter today... twice we felt sure we were looking at her in her last moments, but suprisingly she rallied and is now breathing with a bit of a grunting regularity. My mom and mother-in-law have graciously offered to stay here at the hospital with us for some time tonight so that Conor and I can rest a bit. It's torturuous in some ways for me to rest at all, but having had about six hours of sleep since Copeland's birth I realize it's absolutely imperative at this point. Please pray I can find peace as I sleep and not toss and turn in anxiety. It's hard not knowing when her moment will come, but I am trying to rest in the knowledge that God appointed that time long ago. I know she isn't suffering, per se, but watching her struggle to breathe and grow blue at times is simply agonizing; I think for Conor and I both it's hard to believe she's not in any pain. Please pray we can trust the doctors' assessments that all of the transitions her body is making as she continues to progress toward death are natural and somewhat necessary, not painful and worth preventing.

We will continue to keep you updated. We are praying she might make it through the night if for no other reason than to be able to share her last moments with my dad and father-n-law, as well as a few family members who are in town just for Copeland.

Boothe

almost home

Copeland's heart stopped about 30 minutes ago...she was fading in my arms, but she came back and is now persisting on. They called the doctor in because we thought it was time for her to meet her Father. But she came fighting back. It is so up and down - her heartrate kind of ebbs and flows - we are praying that she is not in pain and have been assured that she is not. This experience contnues to be very surreal. We have sweet moments with her and have shed plenty of tears. I would not trade this time for anything - she is a special girl. I will continue to update you with whatever is happening. Thanks again.

Conor

thursday morning

Boothe and I were able to sleep from 4 am to 8:30 or so. Copeland is doing well this morning- she is struggling to breathe a little bit more right now, but she is still fighting. So we are excited to spend this day with her.

Conor

1:00 am

Copeland has lived exactly 36 hours. We are in awe at how well she's done.

I say that knowing we are likely in the final hours of her life. We've had the most incredible time with her, rocking her, cuddling her, singing to her, sharing her with friends and family. Tonight. I sat in my hospital bed and chatted for about an hour with an old friend who happens to be a labor and delivery nurse here. It was wonderful getting to talk about totally inconsequential things while Copeland slept in my arms. Conor slept for a while on the sofa. Then, suddenly, her color began to change and her chest rose and fell a little less routinely. I called the NICU nurse and it seems we've landed on one stretch of the journey we were a little unprepared for: ultimately Copeland will continue to grow more and more weary, and every cell in her body that's fighting for life will give in to the fact that she just can't make it on this side of heaven. The nurse we spoke with was gentle but firm in her statement that "this will be hard to watch." We are aware that as she fades, Copeland may struggle to breathe, and as a result, may turn a little blue. I tell you this only to let you know that we are specifically asking for prayers right now that she will not suffer - not that there will be no evidence of this, necessarily, but that the Lord will give us a peace that despite the physical signs, Copeland will be free from pain even in the midst of the process. I believe He is capable of delivering us from the heat of the fire - look at Shadrach, Meshach and Abednego - even as the flames burn around us, so we ask that you would pray against suffering for our sweet girl.

I told Conor tonight that after my molar pregnancy, which happened in 2005 and required chemotherapy in its aftermath, I felt incredibly betrayed by God. Not that I doubted His sovereignty or even His goodness. God's ways are not mine, as I've always 'known' in a sort of Sunday-school-sense. But to believe that He was good in a way that I might totally understand or feel, from an emotional standpoint, is something I've wrestled with for two years now. If God is good, why does so much of life hurt? After miscarrying again the following fall - 2006 - and then of course getting this diagnosis about Copeland when we believed we were finally going to have the baby we'd so prayed for, I have to tell you the struggle within my soul has raged on. I have often felt that Jesus, the Jesus I knew and loved as a child, has changed in so many ways and that believing in Him wasn't as much the issue for me as believing in His character... trusting Him despite the incredible pain He has allowed into my life. As C.S. Lewis wrote, I don't fear coming to a place where I doubt His existence but rather a place where all the qualities of God I've believed in, everything about Him, suddenly feels like a joke. And then came the last 36 hours.

Having Copeland for any time at all - the fact that she even made it to birth - has been one of the most wonderful and blessed gifts of my life. I know I speak for Conor and I both when I say that we expected a couple of hours, if that. What we're getting has been beyond our wildest dreams. David writes in the Psalms, "Restore unto me the joy of Your salvation." I think sometimes we all need our joy restored, even when it comes to incredibly basic theological ideas about God that we 'should' get after years and years of believing in Him. I needed that restoration in my faith. I needed to believe Jesus would give me good things just because... not because I did something right or asked in the correct way. These last two days with the daughter I thought I might never get to spend a single hour with have been that for me: faith-restoration.

We have no idea what the next hours will bring. We are alone in our room and the hospital is quiet. Copeland is snuggled safely in her daddy's arms. We would ask you to pray for these three things: one, that Jesus would keep her from suffering. Two, that we would be given energy and strength despite our emotional and physical exhaustion, so that we can enjoy her for as long as the Lord oermits. And three, that as we approach the moment when He takes her home, we will be filled with a peace and even a celebratory spirit that allows us to offer her up to Him with joy, knowing full well we will be with her for far longer in eternity than any length of time we might get with her now.

Blessings...

Boothe

Wednesday, September 19, 2007

5:00 pm

Just wanted to give everyone an update... I'm so glad you enjoyed the photos and were able to finally put faces with our names! I know for some of you, we've been total enigmas so it's nice to "meet" after all this time. My sister took the pictures and also posted them for me, so thank you to her.

We are doing well. Copeland had a pretty rough start to the day... she struggled to eat, obviously, and we have decided that at this point we will not wrestle with that dilemma. The neonatologist encouraged us to focus on keeping her comfortable and as at peace as we can, which doesn't include forcing her to eat when the process is so strenuous on her little body. We did, however, manage to get her to take some glucose water (aka. straight sugar!) and she loved it. It's been the first and only thing she's taken to with any sort of vivacity so we've repeated that several times and she's done great. The NICU nurses explained that the sugar gives her body a bit of a 'high' that calms and relaxes her. It also "pinks her up," as they, which, after several episodes where she turned a bit blue this morning is a major victory. As I type she is resting peacefully in her MImi's arms (Conor's mom). We will continue the regimen of the glucose to keep her content - and change her diaper occasionally to wake her up and irritate her just enough to keep her color and her breathing up to standard.

Thank you for your continued prayers. We are in awe that we still have our little girl. We were told this morning that the way she was fighting might mean she only had between 12-24 hours to live, so each moment we get is an unexpected but precious blessing. Please keep lifting us up, especially as we enjoy this time but do anticipate the hour when Jesus takes her home.

Blessings...
Boothe

Just a few more



Day two: Copeland's fighting today. Every once and a while she just rests in this position and looks up at her mom and dad.



Mom, aunt chelsea and copeland




Copeland, like Sellers, loves having her daddy rock her. There's no safer place than in the arms of her parents.

some more pictures



Sellers and BB (Boothe's Mom) getting to hold her for the very first time. Sellers is already a great big sister.



Sellers was beside herself with excitement when she first got to meet her baby sister



Sweey tiny little Copeland



The Grandmothers BB Boothes mom and Mimi Conors mom



Pops - Conors dad, Papa, Boothe's dad, Conor and his two girls

The proud parents



This was minutes after she was born. She's breathing on her own and doing great!

Meet Copeland Fair Farley



We call her "our little pirate". She's only been opening one little eye, but is has barely closed. She's taking it in, one person at a time.

9:00 a.m.

It is amazing to be writing these words: Copeland has lived almost 20 hours. She made it successfully through the night and Conor and I were able to sleep as well as can be expected. The NICU nurses have done a phenomenal job with her.

Conor went to check on her early this morning and we learned that the hopes the doctors had with the feeding tubes had been somewhat dashed: it's almost as though Copeland's body is so ill-equipped for this world that when she tries to eat, she cannot manage to do other things at the same time. Her breathing becomes labored to the point that the nurses don't feel like proceeding with the feeding can be their top priority. When Conor came back from the NICU around 8:15, it was with tears in his eyes. I think we believed the Lord would take Copeland at His time and due to circumstances beyond our control; it's strange to think we might have to play a small part in making decisions to protect her and to keep her pain-free while at the same time knowing we're risking her life to some degree. Each moment with her is such a gift, but I admit, as I watch her struggle, as she draws breath with increasing difficulty - the nurses said she struggled more last night than all day yesterday - I long for her to be free. No parent ever wants to see their child suffer. So we begin the day with hopes of keeping her a little longer, but also prayerful that the Lord wouldn't let her linger if she is truly hurting.

We will continue to keep you updated throughout the day. I hope to have some photos posted as soon as possible.

Tuesday, September 18, 2007

feeding tubes

I am astounded at how many of you commented on that last post in such a short time! It truly humbles me to realize that so many are routinely 'checking in' on our family, wanting to know what to pray for.

I wanted to let you know that the neonatologist came and visited with us about 25 minutes ago. He was very kind and simply said that many, many babies of Copeland's size - irregardless of their underlying problems - need feeding tubes. It's a relatively common way to make sure they remain fed and can survive as long as the Lord permits. He wanted to be sure Conor and I were okay with administering that kind of 'life-saving' technique; we told him that we absolutely wanted her to have every opportunity to live when the choice was in our hands. If the Lord chooses to take her because of something we cannot prevent, we will know His sovereignty. But at this point, we believe He's giving us an option that will protect and provide for our sweet girl. The conversation went smoothly and even as we speak, Copeland should be eating. Please continue to pray that she will, in fact, respond well to the tubes.

We are off to bed... Conor and I both feel strongly that at this point, Copeland is being cared for by exceptional people who have exceptional skills and we rest peacefully as the nurses and doctors in the NICU tend to our sweet girl.

We love you and thank you for your unbelievable support.

rejoicing

Dear friends and family...

I thought in the quiet of my hospital room I would update you a little.

Copeland is currently resting in the NICU. We are so blessed to have had her even these few short hours... it's been immeasurably more than we could have asked or imagined. I would ask you, if you read this sometime soon, to pray specifically for her ability to eat. We do know that she is not equipped to breathe at the same time she tries to suck/swallow, so bottle-feeding is not an option. The neonatologist is going to come and meet with us in the next hour or so to discuss possible alternatives. Of course, this news makes me a little unnerved. Please pray we will have wisdom about what direction to take.

I will tell you that she is doing quite well at this moment, all things considered. Her APGAR scores were high, certainly higher than we could have hoped for. Her color is outstanding, her little fists do open and close, and she does breathe on her own... she has since she was delivered. We can't really believe it! But we also know that every cell in her body is affected by this diagnosis and we know that even now the Lord has appointed a time to take her home. Please pray we can enjoy each moment without fear, without a sense of dread or even uncertainty... that we can embrace the facts the Lord has given us right now, the facts that she is doing well and is thriving as best as a trisomy-18 baby can. They have predicted that we might even take her home; we don't rest in that, but obviously are anxious to see just what the Lord plans for her life.

All that to say: thank you, thank you, thank you for your prayers. We didn't get the miracle we perhaps most longed for, in her perfect healing, but every moment with her has been miraculous. Sellers is doing well, loved meeting her little sister, and is enjoying her "vacation" at her grandparents' home. Conor and I are at peace. We would simply ask you to rejoice in God's provision thus far and to pray He will equip us moment by moment to carry whatever burden comes along the road.

Much love...

Boothe

Copeland Fair Farley

She came to us at 1:00 PM today and she weighs 4 pounds. She is 17 inches long and the most beautiful thing in the world. She is breathing on her own, though she struggles from time to time. God is so faithful-it is like nothing I have ever seen. We still do not know how long she will be with us, but she is here now and I have so much joy in that. She opens her eyes and makes precious noises. Boothe is doing great- she already put her earings and jewelry back on. She looks amazing. We are filled to the brim right now-praise be to God....

Conor

Friday, September 14, 2007

broken

It is amazing to me that we are fast approaching the week. So many things have happened in the last few hours that I find myself remembering will not occur again until Copeland is born. It's somewhat surreal, and at the same time, almost so heavy and solid in its reality that it hurts to think we'll be back at home in less than a week, with or without our precious girl.

I wanted to let you all know that we are making it. We are remarkably at peace... the Lord has heard the abundant prayers that I know are going up for us continually and we are feeling the impact of your supplications. Recently I heard of a family who lost a beautiful 2 year-old; keeping up with them via their own blog and reading how the Lord is responding daily to the prayers of the saints surrounding them is truly one thing that encourages me not to grow weary as I lift them up to the Father. So I assure you: I am feeling the fullness of the love and support you're pouring out on our family and I would not be where I am, walking with any sort of sanity or joy, if it weren't for you. Conor and I thank you and pray, even now, that as you go to the Father on our behalf, He would respond to the needs and anxieties in your own life and bless you.

We met with our pastor at church last week and it was an unexpected, but much needed, gift. I had thought I might not go; I felt that something else involving the details about Copeland's life and probable death would be too much. But as I dropped Sellers off at school, the Lord prompted me to drive that way. It seems He knew it would be better for me to sit and weep with my husband in a church office than in a parking lot alone. I find that revealing my emotion is much easier on this computer screen than in person. Crying in front of anyone is somewhat uncomfortable. But it's necessary and I know that in the days to come there will be a lot of emotions on display that a few months ago I might have found totally embarrassing. I pray that if you happen to witness the tears, you won't feel totally ill-at-ease yourself. Please know that my weeping - and that of my family - is simply an extension of the weight of our hearts. Both joy and grief have a fullness. "My cup overfloweth..."

The Lord used the pastor we met with to reveal some things about Conor and I that I think we probably knew but hadn't connected to this situation. I realize He is shaping and changing me, but I hadn't thought that perhaps part of this is about breaking some of the chains from around my heart and sweeping clean the corners of my soul that I have for so long left unattended. Apparently I am quite legalistic. I laugh at the word 'apparently'; I spend the majority of my time feeling massively guilty about something, so much so that not feeling guilty elicits a sort of discontentedness in me, almost like lethargy. Guilt is for me what liquor is to an alcoholic; while I know it's wrong to indulge, obviously un-Biblical, I find it's almost necessary for me to operate at full-function. It sounds odd, but perhaps it's because guilt facilitates opportunities for work, ways for me to feel useful and important in my own salvation, or even just my own well-being. If I feel guilty about something I've eaten, after all, the quickest and most satisfying antidote is to go to the gym. We live in a society that tells us we can 'fix' the stuff about ourselves that we most loathe - or are supposed to loathe - if we try hard enough or dig deep enough. If it weren't true we wouldn't be buying self-help books in a monstrous continuum.

I hadn't considered - or at least not long enough for it to prompt me in any other direction - that God isn't concerned with what my idea of personally "fully-functioning" is. I hadn't considered that He might, in fact, want to blow that idea to smithereens.

I'd like to hang onto my 'works-based' religion, if I could. Like I said, without guilt, I lose the opportunity to earn forgiveness. WIthout a bought excuse, I lose what is unfortunately my most powerful motivation for doing good things. And without doing good things, I really can't figure out why Jesus loves me if I don't believe in grace. And sometimes the only way to receive grace, and to really understand what you're accepting (that you are responsible for exactly 0% of what God fully accomplished in saving you), is to be broken. Broken enough that you can't hold onto anything except Jesus' hand when He stretches it out.

This season has broken me. It breaks me daily. Someone recently told me that going through an experience like this will leave you with a "limp" - that I can expect to never feel totally "put together" again. They weren't referring to emotions, I don't think. They didn't mean I'd be a constant wreck for years to come. I think they simply meant that the Lord will allow me to incur a wound that, while He may heal it, will leave a scar I will never be able to forget - certainly not cover up. I know the Father uses the weak; the stories of Jesus healing the crippled in the New Testament reveal, over and over again, God's heart for the lame. Irregardless, I don't want to be included in that demographic; I'd rather be 'whole' in the eyes of the world, whole by the standards that I know to be real here in this life. And so Jesus understood - knew from the beginning of time - that I'd need to be reminded that in my weakness, He is made strong. It is in the things the world calls foolish and insignificant that He reveals His glpry. May His strength swallow up my frailty, His joy my sorrow.

Wednesday, September 12, 2007

peter

I woke this morning with an old Amy Grant song in my mind. I've heard it literally countless times... the words are so engrained in my memory that I don't think reciting them in my sleep would be an issue for me. But this morning, they had a relevance and almost a power that I hadn't ever experienced. The song is called "Angels," and it describes Peter's trial in Acts 12 when he is thrown into prison by King Herod. I often wake up with random songs stuck in my head (usually something I heard on the radio the day before, and usually a total annoyance), but I genuinely felt like this was from the Lord. He knows that this song is familiar to me - it carries with it almost a balm for my soul, a reminder of childhood and innocence and a belief that was totally untainted by shattered expectations or sorrow. But I felt Him telling me that there was more to this than simply encouragement.

In the story of Peter's imprisonment, he is taken shortly after his friend, James, is murdered. He's thrown into a jail cell with 16 soldiers commanded to keep track of him. His public execution is 'on the books.' To say that things looked dire is to make a gross understatement. And yet, according to the Bible, "all the time Peter was under heavy guard in the jailhouse, the church prayed for him most strenuously" (12:5). The very night before his death was to take place, the Word says Peter "slept like a baby" (12:5) despite the fact that he was shackled to two guards. Shackled to them! Guards stood at the doors to the cell, too. "Herod was taking no chances!" (12:6b). I can't begin to do the rest of the story justice in my own words, so here is the translation found in the Message:

"Suddenly there was an angel at his side and light flooding the room. The angel shook Peter and got him up. 'Hurry!' The handcuffs fell off his wrists. The angel said, 'Get dressed. Put on your shoes.' Peter did it. Then, 'Grab your coat and let's get out of here.' Peter followed him, but didn't believe it was really an angel - he thought he was dreaming.

Past the first guard, and then the second, they came to the iron gate that led into the city. It swung open before them on its own, and they were out on the street, free as the breeze. At the first intersection, the angel left him, going his own way. That's when Peter realized it was no dream. 'I can't believe it - this really happened! The Master sent His angel and rescued me from Herod...' (12:7-11)."

Shortly thereafter, Peter goes to see some of the people who are gathered together praying for him. They are in such shock that they don't even believe it's possible; they tell the servant girl who hears his voice on the other side of the door that she's crazy, that she must be speaking with his angel. When they finally concede and open up, to find him standing there, in full physical form, they "{go] wild!" (12:16). That night was likely to be one of the most incredible that many of those believers would ever experience. The Word says that at daybreak, "the jail was in an uproar.... Herod sent for [Peter] and they could neither produce him nor explain why not" (12:18-19a).

I would normally avoid using so much Scripture. But I wanted to give you the full impact of this story because so much of it landed on my heart this morning as a specific reminder of many, many things. First of all, Peter's being prayed for the church "strenuously." I believe that, if I had the eyes to see, the amount of believers on their knees for Conor, Sellers, Copeland and I would floor me, literally throw me to the ground. I believe your prayers are sincere, heart-wrenching, gut-level gasps for the Father to do what He intends... but to protect us, to glorify Himself, and to give us strength to get through whatever He has in store. These were the prayers of the saints while Peter stood in chains, I'm sure. But some of you are praying the prayers that Conor and I haven't prayed as consistently. Some of you are praying that, despite the 99.9% accuracy rate of the tests performed, Copeland will be born healthy - that the Lord will literally break the chains of the medical evidence and lead us, "free as the breeze," into a life with her that is full and complete. Do I know for certain that the Lord intends to do this? No. I don't believe the saints praying for Peter that night had any certainty, either. Why else would they have remained convinced, until seeing him face-to-face, that his chances of survival were slim to none? And yet God worked a mighty, inexplicable, irrational, mathematically and scientifically impossible miracle for no other reason than to bring Himself glory. The fact that Peter slept as soundly as he did the night before his death tells me that the Lord had already given him a peace to accept the grim situation he was in. There was no agonizing over possible escape plans or how the Lord might intercede. Everything was left entirely up to Him. And I am sure that, had Peter been asked to give his life then, at the orders of King Herod, he would have done so as unflinchingly as he did when it was truly his time.

I pray that Conor and I can be like Peter. It's a stretch, I know, and an incredible set of shoes to fill, but I believe the Lord is preparing us to see His glory revealed in an amazing way. I pray that, even on the night before Copeland's birth, and the nights that perhaps follow in her life, if He chooses to give those to us, we will have restful sleep, with a peace that God's got this... no matter the outcome.

I pray that you can continue to lift us up, to pray as the saints did, "strenuously." I know that the Lord can and still may choose to perform a miracle that is beyond any of our current abilities to fully believe. I would ask that you pray He would, in fact, choose to do that. Pray because if anyone's faith is weak, too weak to "deserve" any outrageous power on her behalf, it's me. And yet I know there is no "deserving" in grace.

Conor and I walk into next week embracing the facts the Lord has given us. There are plenty of soldiers and quite a few iron gates in between our family and any kind of victory. And yet I also walk knowing that with your prayers and with a God who delights in working things out for his own purposes, there is much we will be discussing years from now about this week, in awe and wonder at His might and power, tenderness and love.

Pray for our steadfastness, that we will sleep like babies until then...

Monday, September 10, 2007

you shall not pass

I wanted to give everyone an update to ask, once again, for your specific prayers. As time goes on - and I know Conor said this in the previous post - things just seem to feel worse, the darkness heavier, the uncertainties stronger. So prayer from the saints is all I can lean on. My own prayers, I suppose. But, as I've heard several times in this journey, I know that sometimes, you will have the strength to pray for what I can't.

We received the good news - and I say "good" with a sense of its relativity... certainly we are not elated to even be having a discussion with anyone about any of this - that when Copeland is born, we will be able to keep her with us for as long as the Lord allows us to. There will be no NICU admittance. The charge nurse that I spoke with assured us that, in these cases, parents are permitted to "call the shots." I am grateful. And I believe this is the result of your approaching the throne on our behalf. Knowing that as long as Copeland breathes, I will be there, Conor will be there, and that her life will not be interrupted by any sort of medical ridiculousness is a blessing. I confess it makes me a great deal less anxious about our time after delivery.

It may be evident in my tone, but I am definitely struggling. I say this to you because I never want to look back on this and wonder why I wasn't more authentic, why I wasn't more willing to just share my heart? I have found immense strength over the past 12 weeks, and I have no doubt that it's because you have been willing to carry as much of the burden as you can. But I confess I wake each morning hating that this is where we are, hating the situation, longing with all I am to just make it go away. I'm sure this is natural, to be expected. But it's exhausting.

I don't think I've ever told anyone about this outside of the group that gathered at my parents' the night we learned Copeland was suspicious for trisomy-18. In the doctor's office, literally in the darkness of the sonogram room, I remembered a scene from a movie I think I'd seen one time, the first installment of the "Lord of the Rings" trilogy. That film released about a month after Conor and I were married, so back in December of 2001. I'm not a sci-fi fan; I've actually never even read the books themselves. In fact, it's a irony that I'd remember much of the movie at all, other than those gruesome orcs and the incredible special effects. But I did. I thought of the moment when the Fellowship of the Ring is crossing through those dark, demon-possessed underground passages, running desperately from one seemingly inconquerable foe straight into the path of another. One such villain is a demon of incredible might and power, and as you watch, it's apparent that the little band of heroes is unlikely to get past him. It's only when Gandalf stands firmly fixed between his friends and the towering monster, shouting like a mad man, "You shall not pass!" with his staff banging frantically against the ground, that the rocks crumble, the demon falls to his death, and the Fellowship is free. Certainly there's more to the story - two movies' worth - and Gandalf's opposition to the demon costs him a great deal, but the image remained etched on my memory for years, so much so that it was what I thought of as I lay on the table in the sonographer's office, waiting to hear from the perinatologist about all the complications our little girl had.

Like I said, I'm no sci-fi fan. I hadn't seen the movies in almost six years. Conor and I had neither been talking about them or listened to the soundtrack recently. I sincerely believe this scene rose up in my mind because the Lord wanted me to remember those words: "You shall not pass." I know it may seem odd or even a little quirky to say that I do, in fact, believe in the supernatural, the stuff our eyes can't see. That afternoon, that room wasn't simply a doctor's office furnished with a few cold pieces of medical equipment. It was apparently a battleground. And the Lord was apparently wanting to signal to me that, no matter what happened, there would be something He wouldn't let pass. I don't know what that something is. I thought at the time it would be the trisomy-18. But the tests came back positive. I've thought, to this day, that perhaps it will be the words "incompatible with life." Maybe Copeland will defy the odds. Maybe she'll be born healthy, or even if she is affected, maybe she'll live longer and happier than doctors would have ever expected. I don't rest in that, but I can see how telling the Gandalf story years from now, looking at a perfectly healthy daughter who was thought to die almost immediately upon birth, would make for a very dramatic twist.

But as I sit here, 2:30 in the afternoon, the sun shining outside, my husband and daughter safe and healthy in this world, I am compelled to think that there's something greater, something far more sinister and more menacing than even death that wants permission to skulk into my life. I am a strong believer. I don't say this to pat myself on the back or to puff myself up; I say it because it's true, and I've been that way for a long, long time. But this is a whole new ballgame. It's easy to believe in a God that loves you and that wants the best for you when things are going well - even when things are going semi-well. But this is different. We have exactly eight days until we bring Copeland into the world. Eight days. It feels like a vast distance away and also like someone's knocking at the door, and I can't decide which terror is easier to live with. Maybe there's more than one "something" wanting entrance into our world; perhaps doubt, defeat and despair.

I need you to pray that this terror, this fear, this anxiety, this anguish, this heartache, this incredible burden the Lord has asked us to bear, will not be able to "pass" - will not have control or a hold of us. You are not Gandalf. But you know the One who is. Please ask Him to "stand in the gap," as my sister has so often said, and cast Himself between Conor and Sellers and I and the one who comes to steal, kill and destroy. I am not naive about the incredible darkness we may walk through in the next few months. I need you to pray the Lord will equip me to leave my house. To put earrings on. To go on dates with my husband. I need you to pray that Sellers will see Conor and I cry and laugh and endure a hardship with a belief, steadfast and unshakeable, that will influence her for years to come. I need you to pray that in the moments when I am completely alone, when Conor is alone, when we can't distract away the pain, that there will be no foothold of resentment or anger between us - that while he goes through his own private experience of grief, and I go through mine, we will still be knit together.

Most of all, pray we will walk with eyes fixed on Jesus, even when we are angry with Him, or confused, or frustrated, or unsure if He even cares. Pray we will be able to remain completely afixed on Him, so that nothing - no desire or hope, nor even future blessing - will detract from the glory He wants us to witness in Him.