Ember's Story

I've been putting off this post for awhile, for a few reasons. The main one is I've just had no down time, between either being at the hospital with Ember or spending what little time we had at home with Jake and Eisley. But, those two started back at school today (my babies are in 1st Grade!!!), so I thought I'd at least start the story of Ember's arrival and see how far I got!

I would first like to thank everyone who has been so incredibly supportive of us this past week through prayer, encouraging phone calls and texts, stopping by the house, and just being there for us during this time. It has been a whirlwind, a roller coaster, and every other cliche' term you'd use for a week you can barely wrap your head around! Thank you so much for being so wonderful. Josh and I are truly blessed by each of you.

Well, I guess I will start with last Monday. Birth mom was scheduled to be induced (again) for Monday morning, so I decided I would go to work that day and just leave when she wanted us to come down. I was a nervous wreck, not knowing what to expect and not knowing what the day would hold. Mostly, though, I was just so relieved that there was an end in sight. These past few weeks have just been awful, waiting for something we've been dreading, not knowing what God was going to ask us to do, but having a pretty good idea that whatever it was would be very hard.

Shortly before lunch I got a call that due to some issues I won't go into, birth mom had been sent home and rescheduled for Tuesday morning. Ugh. Another let down. I could barely hold it together, and ended up leaving work because I just could not be there mentally or emotionally. I was a mess.

Tuesday came, and praise God! Her induction, which we were told four weeks ago would be happening the next day, FINALLY had begun! I could practically feel her breathe a sigh of relief as well, since I knew she was feeling physically and emotionally miserable. Josh and I prepared to go down to the hospital that evening, but birth mom was progressing really slowly. We ended up staying the night in our own beds, and while I was glad Josh could get a decent night's sleep, I don't think I fell asleep all night. I was worried about "Kim" and just wanted to keep praying for her, knowing what she was probably going through.

The next day we continued to wait for news, but it didn't come as fast as I was hoping. We got a call at some point in the late morning. She was still in labor, things were still going veeeery slowly, and the doctor's informed her that the baby would not only die within 24 hours, but that she would have major facial malformations, and we all needed to be prepared for that.

Deep breath. How do you prepare for that? You can't.

We settled in and prepared for another long evening and night. But, around 1:00, we got a call that we were not expecting at all. Kim had given birth to a beautiful, seemingly healthy baby girl. We of course knew her diagnosis was still a reality, but the fact that she was alive, perfectly formed outwardly, and having no immediate health issues was a miracle in itself. We packed up our kids and our stuff and got to the hospital as fast as we could!

I remember praying the entire way to the hospital, "Lord, just let her live long enough for me to hold her. Just let me hold her while she's alive, that's all I want."

Josh and I had decided that if we were still allowed to name her, we would go with our original girl name, Ember Rose. We had gone back and forth about changing it after we learned of her diagnosis, but after we heard of her birth, we decided she was always Ember Rose, and why should we change it now?

We met the adoption case worker in the parking lot of the hospital. It was about 417 degrees outside, and Josh and I were probably already sweating from nervousness. We had a diaper bag that was overflowing with things for this baby girl, things I didn't think we would need after we learned the baby's diagnosis, but at the very last second heading out the door I decided maybe I would need them after all, and just brought them along. We also had a few things for Kim, one of which was a charm necklace we had picked out shortly after she chose our family.

The next few minutes were spent trying to explain the entire complicated situation to nursing staff, getting the hospital social worker on the phone, and ironing out the confusion of the whole thing. We peeked in on Kim who was obviously exhausted, and she told us she'd like us to go see the baby, and that she looked great.

I was pretty nervous about how the staff would treat us or if we'd even be allowed to see the baby, let alone hold her. With the exception of one labor and delivery nurse (who wasn't even Kim's nurse and was totally outside the situation) who continued to give us the stink eye every single time we saw her even in the days following, the staff was wonderful to us.

We were led into the NICU with our case worker, and my heart was pounding so fast. I had no idea what to expect, but I can tell you right now I did NOT expect what I saw. What I saw was a perfect, gorgeous, breathtaking baby girl who looked as healthy as could be, getting her very first bath! I was convinced this was not the right baby, and even looked at Josh to see if he was thinking the same thing. But, it was her! I expected her to be, at the very least, hooked up to about a million different machines and completely sedated, and that was the best case scenario in my head. But there she was, wide awake, as perfect as any baby I have ever laid eyes on.

Ember had the most wonderful curly soft black hair I had ever seen, and I couldn't keep my hands off of it! Once the situation with the staff was straightened out, they asked if I'd like to hold her. Um...YES PLEASE!!! At that point we still weren't taking pictures so I don't have any of that exact moment, but it was something I will not soon forget. I thanked the Lord that I got to hold her, alive, and look into those beautiful brown eyes! I knew we were experiencing a miracle, and I couldn't wait to tell Jake that miracles do still happen! I was holding an actual miracle.

The hours that followed are a bit of a blur. I know that we spoke with the doctors about her condition, and they told us that they were at that time re-diagnosing her with a less severe form of the condition they diagnosed in utero, though the less severe form was still devastating in terms of the life Ember would be able to lead. We wouldn't know anything for sure until after her head ultrasound, which was scheduled for later that day.

I know that we spent every minute by that baby's side, and Josh and I were pretty much in a daze about what was going on. What were we going to do? This whole situation was nothing like we had anticipated. She obviously wasn't as bad as they thought, and though we knew she would have major special needs, how severe would they be? How severe could they be when she obviously was doing so well? How long would she live? Could we, possibly, maybe, somehow, end up taking this baby home after all? We had some big, very big, decisions to make. But in those moments, all we had to do was hold her. Kiss her sweet cheeks, touch her soft hair, cuddle her as closely as possible. And we did.

That evening Kim came in to hold Ember for awhile. We had a really nice talk with her, and though I'm sure many of you (including the nursing staff who could not contain their wide eyed stares in our direction) think that would just be the most awkward thing in the world, it wasn't. It was just...natural. We were three people that loved this baby so very much, and were worried about her, and thought she was beautiful, and wanted her taken care of. That's it.

Josh and I decided to give her some time alone with the baby and go grab some dinner. We drove to Jack in the Box and sat at a high top table where the guy cleaning the floors jabbered on at us incessantly about something I don't remember at all. All I could think was, "Please leave us alone! We have to talk about really serious stuff! We don't care who's giving you a ride home!"

After about ten minutes of that and then finally getting a couple minutes of silence, I asked Josh what we were gonna do. He just shook his head. It was in that moment that I felt so abandoned by God, like He dropped us in this ridiculous, absurd, unfathomable situation and then gave us no guidance whatsoever! Could we at least get a HINT about what You want us to do Lord?! Please? There are some moments in life where I feel so much younger than I am (and I'm pretty young, thank you). I felt that way then. Like a small child expected to make adult decisions.

Josh was getting frustrated with the crazy atmosphere at the restaurant and said he just needed to get out of there. We abandoned our food and walked to the car. It was still miserably hot outside and we just wanted to get back to the hospital and hold that sweet baby. We got in the car...and it wouldn't start.

You. Have. GOT. To be kidding me.

Our battery was dead, and we were stranded at a fast food chain. Really Lord? Really. We grabbed our soda and hoofed it back to the hospital. As we walked down the sidewalk and Josh called his dad about getting a new battery, I looked up at the sky, and I kid you not, there was a rainbow. It wasn't raining, it hadn't rained, it wasn't going to rain, there was just this rainbow. I tugged on Josh's arm to get him to look at it but he was too busy on the phone and I don't even think he heard me. I know how super cheesy this sounds, but I just felt like God was giving me this little reminder that He was still there, in the midst of this chaos, and He didn't desert us. He was just letting things play out, and we needed to continue to trust Him.

When we got back to the hospital we went in to hold Ember. Josh gave her a quick snuggle and then headed out to meet his dad to get a new battery. While he was gone, Kim came in to the NICU and stood on the other side of Ember's bassinet. I held one hand, and she held the other. We talked for about 30 minutes. Some things I remember, some I don't. I know she asked me if I thought Ember would be okay. I know we talked about what kind of schools we send our kids to, and how she didn't want Ember in public school. She told me she hoped she wouldn't give me as much trouble as she gave her own mother. She told me she thought the doctors had it wrong, that this baby would end up being okay after all. We talked about some things I won't put on the blog, but I will always remember. And she started to cry, and she told me she just hoped Ember wouldn't hate her. She was so afraid she would hate her, and think she wasn't wanted. I told her that I could not promise her much, but I could promise her that if we took Ember home, we would always speak highly of her mother. She would know how special her story is, and she would never, ever doubt how much her mother loved her. I would make sure of it.

To my knowledge Kim had never opened up so much before during this entire process, and I felt so blessed that God allowed us to have that time together, that He allowed me to share our faith with her and share how very much we loved this baby and wanted what was best for her. I am positive He orchestrated that entire situation so that we could have that time together, and I am so thankful He knows so much more than I do.

After coming in one more time to give Josh and me a hug and tell us thank you (as she wore her new necklace), Kim went home, and Josh and I found ourselves in the sole charge of this child we did not anticipate living past the day.

At some point, they came in to do her head ultrasound. I am fuzzy on the timing of things, but that ultrasound is a memory that will never fade as long as I live. I remember the tech putting the probe on her head, and looking at the screen. Josh was next to me and we were both holding her little feet. My heart sank into my feet when I saw it. There was nothing there. There was absolutely nothing in her head. Nothing. I looked at Josh to see if he understood the magnitude of what we were seeing, but couldn't tell if he did. I then convinced myself I was no expert, I was not a doctor, and what did I know about babies' brains? Maybe that's just how they look. Maybe I had no business reading into what I saw, or didn't see. I tried to talk myself out of the truth I knew deep in my heart. Ember not only had a brain abnormality, she didn't have a brain at all.

We were told we'd get the results the next day, and until then not to read into anything. I decided that's exactly what I needed to do. They told us only the day before that Ember would have severe facial deformities, that she wouldn't live to see the next day, and there she was, perfectly whole, no complications or signs of trouble, so who was I to fear the worst when things were not always as they seemed? I was then convinced that I had imagined it, that surely she had a brain, otherwise how could she take a bottle, open her eyes, respond to light and pain and sound? Certainly those things aren't possible without a brain, therefore I needed to just back up and calm down and wait for a real doctor to diagnose her.

Josh and I drove home late that night, exhausted both emotionally and physically. We talked about everything, about how beautiful she was, about how our lives would change if we were to adopt a special needs child, about how that would affect Jake and Eisley, our families, our jobs. We prayed and we talked, and we finally went to sleep.

I woke up at 4 a.m. the next morning, unable to fall back asleep. I got up and sat in our big comfy chair with my Bible, and spent some very intense and awesome time with the Lord. There is nothing like reading about His promises when you are confused and distressed and scared. I bawled my eyes out and told the Lord that we would do whatever He asked, if He would just make it clear to us what He was asking.

The next few days were spent holding and attaching to that gorgeous baby girl. We loved her, and that was the only thing we were sure of. Josh and I just wanted to do what the Lord was asking us to do, whatever that may be, but we were just so confused about what that was exactly.

We got to the point that we had accepted that Ember would have special needs, and that we could do that. We could bring her home, and we would love her abundantly. God would have to equip us to deal with all of that, one day at a time, but we were confident that if God wanted us to do this, that He would provide for it. It was terrifying. Terrifying. The thought of how our lives would change bringing a child into our home with such severe special needs. Would our families support us? Would we be capable of this? How would this affect Jake and Eisley?

But one thing was certain, God granted us total peace, even through our fears, that He would be there. That no matter what the future held, we would not be alone. That we needed to look not at how our earthly lives and comforts might be affected, but how being obedient would grow His kingdom and give Him the opportunity to show others what an awesome God we serve. We had to keep our focus on that, and let the noise of all going on around us fade into the background so we could hear what He was asking of us. We decided we just had to choose a path and pursue it, and pray that God would make it clear to us if we weren't going in the right direction. I was told by someone I love and respect so much that if our heart's desire is to be obedient to Him, He will make it clear to us if we are going the right way. He will either affirm that decision, or change our direction.

So we chose a direction. We would pursue bringing this little one home.

The next day I asked my sister to come to the hospital with me instead of Josh, just for the morning, so she could be there when the doctors spoke to me about Ember's test results. As I have mentioned before, she is a pediatric hospitalist, and actually worked with some of Ember's doctors in the past and had a good relationship with them. At one point, the resident came in and pulled up Ember's ultrasound pictures on the computer screen by her bed. As I was holding Ember, my sister and the doctor looked at them silently. They didn't say anything at all, not one thing. My sister stood to the side and asked me, "Can you see that? Do you see it?" The resident looked at me sympathetically as I said "Yes" and started to cry. I was right. I had been right all along, and I wished so much I had been wrong.

My sister sat down and explained to me what this meant exactly. Ember had hydranencephaly. She had no brain, only a brain stem, which allowed her to have reflexive functions like sucking and responding to pain. Only fluid was in her skull, and if they drained it with a shunt like I asked, hoping her brain would somehow expand, it would kill her.

I knew, I had known the whole time, but that was the moment it was confirmed to me. Ember was going to die. There was no telling when, but she was going to die as a baby, and Josh and I needed to make another decision.

I called him and told him the results. We were of course devastated for her as well as Kim. We had been holding out hope, and that hope was just extinguished. But, even so, we felt at peace with it. We felt that God was leading us in a different direction, and we again needed to seek His will and see where we ended up.

We knew this changed everything. We couldn't imagine bringing Ember home to die, not with Jake and Eisley to think about. But spending these days holding her, loving her more each time I looked at her, caring for her, bathing her, dressing her, being called "mom" by the nurses and doctors, it was just so hard to imagine not taking her home.

While Josh was still on his way to the hospital, all of Ember's doctors, her nurse, me, Lisa, and the social worker held a care conference in the family meeting room. I sat on the couch next to Lisa and looked into the kind, wise old eyes of Ember's neurologist. He explained Ember's diagnosis in detail. He told me Ember would die within the year, and he told me how she would likely die. He asked me to consider how it would affect my children to have her die in my home, and he said, and I quote, "Continuing with this adoption would be a mistake. It would be an incredible burden with absolutely no reward."

That's when I started to cry.

What he said might sound extremely callous and insensitive as you read it in black and white, but he said it with the best of intentions. He cared about us, it was clear to me, all of the doctors did, and they were absolutely mystified that we were still at the hospital with this baby knowing what we knew, let alone still considering bringing her home even with the diagnosis she now had. One doctor pleaded with us to consider the financial ramifications this would have on a young family, adopting a baby with such severe health issues. He told us he in no way wanted to make light of the situation, but just wanted us to be fully informed when making our decision.  That doctor pulled me aside three different times to try and explain his concerns about the adoption of this child.

Josh and I didn't know what to do. How do you make a decision like this? It was impossible. We wanted what was best for Ember, but we needed to make a decision that was best for Jake and Eisley as well. Was finding Ember dead in her crib one day something I wanted to possibly put Eisley through? What about the amount of time we would spend in hospitals making impossible decision after impossible decision while our children spent all of those hours away from us, with family members? Could we possibly bury another baby girl? How would we afford that? How would our families cope with bringing this child home, attaching to her, and, eventually, losing her? Hadn't we put them through enough?

But then we would look at her, and we would melt. If God wanted us to do it, we could do it. He wouldn't ask if it weren't something He wanted. We could not simply say no to Him just because of our fears. There is no scarier place to be than outside of God's will, and we certainly didn't want to be there. The doctors had talked with us about discharging her to a group home for medically fragile children, one that I am unfortunately familiar with due to the kids I see coming from there at my work now and then. Our social worker talked about finding a medical foster family, but they were having a hard time due to the extreme circumstances and the short notice.

I remember sitting next to Josh by Ember's bassinet and saying to him, "Maybe we should just bring her home. Just bring her home until they find someone who can care for her. I don't want her in a group home. I will not have her going to that hell hole to rot away and die alone."

He agreed with me, and we stared at her, and I thought about how we didn't bring the car seat with us because we never in a million years thought we would need it...but maybe we would after all.

And then my phone rang.

It was our case worker, and she asked if I had some time to talk. I stepped outside and listened as she told me that they had found a foster family for Ember. Not just a foster family, a family who had raised a baby with her exact diagnosis. She told me the foster mom was an active member in the foundation specific to Ember's diagnosis, that she knew more about the condition than any of us probably did, that she was ready and able to take Ember home as soon as she was released. She told me they were Christians and wanted us to stay involved in Ember's life and have a relationship with her if we wanted.

Yes, I was bawling by this time. It was a clear answer to prayer, and we were so thankful God had given us some clarity. Josh and I went to lunch and talked about how this family seemed perfect for her, that she would be well cared for and loved and would live and die in a family setting, not a sterile hospital group home. It was a huge load off of our shoulders, but I also felt I wanted to talk to this foster mother myself before we made any decisions. It was still essentially up to us. And I wanted to make sure whoever was going to take Ember was fit to do so.

I called the number our case worker had given us for the foster mom wanting to take Ember. I was so nervous I would hate her! I was prepared to say, "Nope! Not good enough! We will be taking her home thank you for your interest!"

She. Was. Amazing.

We spent 45 minutes on the phone talking about Ember, what she looked like, what she responded to, what her condition was, what the doctors were saying. She educated me immensely on the diagnosis and I learned way more about it in that one conversation that I did googling it for hours! She expressed how excited she was to meet Ember, how she missed her already, how she longed to bring her home and love her to pieces!

When I hung up with her I looked at Josh and told him she was perfect. We couldn't ask for more. Ember couldn't ask for more. As we were walking into the hospital I got an email from the foster mom telling me her "wish list" for Ember. It mostly included some medical things I wanted to ask the doctors about, but at the very end, she wished they would let Ember come home, because she missed her already. I cried, and I knew right there that God had brought the exact person meant to care for this sweet baby into our lives at the exact right moment.

After that, Josh and I felt like our role in Ember's life was changing. We would continue to be there for her, holding her and loving her and advocating for her, but we were not her parents, we were just her special guardians  entrusted with her until she could go home. We got to spend a few hours with the new foster mom  in the NICU, talking and talking and getting to know each other while we all cooed and awwwed over sweet Ember. That girl is so loved. So loved. She will never want for attention or affection, this I am sure of.

I came down with a really bad cold yesterday, and didn't get to see Ember today due to my not wanting to spread anything in the NICU. It was the first day I didn't get to see her since she was born. It was the first day Josh and I didn't spend hours upon hours by her side. Tonight, Josh went to see her and hold her and love on her a bit. He texted me while he was there. "I love her."

That is one thing we want everyone to understand. We love this child. So very much. But she is not ours. We made the decision that was best for her, as well as for our family, but make no mistake, she is a precious child of God and we would have taken her home in an instant if God would have allowed that. It just wasn't in His plan, and we are okay with that. He brought us into her life for a reason, for many reasons probably! And we feel so incredibly blessed that we were chosen to be a part of her life, even if it wasn't the way we planned.

I would love to eventually share all the conversations and comments we've had throughout this process. God has been able to use her little life and story to do some pretty big things for Him already, things we may never know the magnitude of! Ember's condition is so rare because when it is found in pregnancy, the recommendation is always to terminate. Always. And most people do. She is a miracle. She made it, and she was given the opportunity to make an impact on this world. We feel so blessed to help her do that.

Josh mentioned to me that this entire process has made him empathize so much more with birth parents. To decide not to take a baby home that you love dearly, that you want so much to give the best life possible to, it is an impossible decision to make. It gave us a glimpse into the struggle of a mother making an adoption plan, and I feel really blessed that we gained a new perspective and appreciation for what they go through, albeit on a much smaller scale.

Where do we go from here?

Right now, we are still transitioning Ember into the care of her new foster family. We are hoping she will be discharged next week, and plan to continue spending time with her until she is. We made a commitment to her birth mom that she would not be abandoned or alone, and we have no intention of breaking that commitment. We will go down there as often as we can, and you better believe I will be snuggling her to pieces and trying a dozen new handbands on her by the time I leave! Foster mom will be coming for visits as well until she can take her home for good. At that point, we will stay in touch with her foster family and maybe even get to visit with her now and then! We are hoping God has started a relationship with this foster family that will only grow from here, and seeing as how I have already spent hours on the phone with foster mom, I think it will!

Josh and I are talking about when we should go back up on the waiting list. We want things to settle in a bit, but we will get there, eventually. We are so thankful for your support as we navigated this complicated situation.

Our hope right now is that people will understand that we consistently sought God's will in all of this. We did not try to take the easy way out, and we did not choose to not take Ember home because we weren't open to special needs or that she wasn't perfect or wasn't good enough. Ember is perfect. She is perfect. But we felt very strongly that God had a different plan for her, a different family. We made the decision that was best for her, and best for Jake and Eisley. It wasn't our first choice. Our first choice would have been to take Ember home and love her until the Lord took her. But that just wasn't what the Lord had for us, and we are totally at peace with that.

We have had a lot of comments such as, "I can't believe you guys are doing this. You're amazing to be there for that baby. You're amazing to love her like that." We would like to clarify one thing: We are NOT amazing. We aren't. We are messed up, emotional, selfish, prideful sinners. Our God is AMAZING!!! It is only because of Him that we are capable of getting up in the morning, let alone capable of doing anything of worth in this life! It is not our love we are giving Ember, it is His love! It is only with Him that we can do anything, and without Him, we are all hopeless. We would also like to tell you that Ember is the easiest baby in the world to love. It is effortless, loving that baby. Anyone who has seen her or held her instantly falls in love with her! We are not somehow special because we have chosen to walk this path with Ember, but if you are wondering what makes us different, it isn't anything about us. It is all God! He is good, all the time, and He has been good throughout this entire process, even when certain things don't make sense.

We have no idea what the future holds. We're hoping it is a lot of joy, and at some point, a healthy baby to bring home to Jake and Eisley. But we have resigned ourselves to the fact that God may just have different, bigger plans for us. We are okay with that. Josh and I have gotten to spend a lot of time together, just talking about how this experience is affecting us, and it has been nice watching our relationship grow during times like these. Josh thinks that down the road, once our kids are grown, he could see us being a temporary medical foster family. That we could do good things through that. That we'd be good at it. I think he might be right. :)

Thank you for reading the novel that is Ember's story! To think I left out so much and this was probably my longest entry yet! I would love to share pictures of Ember with you, so if you see me, just ask me! She is truly magnificent! Just a beautiful, perfect little angel baby. And I'm not biased or anything. ;)

Stay tuned. We know God has lots more in store for our family. He always does...