Keeping it real. Ever since I had a #pulmonaryembolism two weeks ago, I have doctor appointments on top of doctors appointments. On top of doctors appointments. At least that is how it feels because one doctor appointment will wipe you out. So does making the bed. Sheesh. So today Tom’s mom watched Tommy while I went to the doctor, then she left and I remembered I had to go get my blood drawn. Not sure how I forgot since I do it every day. ANYWAY. I had to drive all the way back across town to the hospital, with Tommy. I was grumbling the whole time.
Then I’m walking across the parking lot and it hits me. I am walking across this parking lot. I am holding my baby’s hand. I am walking into the same hospital that saved my life. I drove myself here. I can walk. I can breathe. I can hold my baby’s hand. We, are okay. . . I got to the lab, my favorite tech was there (shout out girl) and she got my blood in .007 seconds instead of three tries like everyone else. “See,” she says, “that was easy.” She smiled and gave Tommy a Scooby-Doo sticker. . .
I asked her why he got the sticker instead of me. But I was kidding, I would have given it to him anyway.
My favorite tech reminds me of Jesus. Not because she gets my blood in one try. She is radiant and confident and comforting. I would never tell her that but I should. So today when she told me it was easy and gave us a Scooby-Doo sticker, it reminded me that God is like that too. We have to do inconvenient things and there is God, with a pat on the back and a Scooby-Doo sticker. See, He says, that was easy.
We also have to do hard things that are hard.
On the way home there is a sunflower field. It’s right off of the road, all of my friends know about it, so shout out. I may or may not take credit for it. Even though I’m sure it has nothing to do with me. It’s just that this one time, I tried to buy sunflowers from a family on the same road but the wife kindly explained that they only grew them for bird seed. I told her she was missing out, that I would pay her to cut sunflowers. The next year there was this field across from their house. $3 for 13 flowers. I’m sure it’s a coincidence.
But you know for sure I am going to stop. Every time. “Tom, Tom! Pull over, the SUNFLOWERS!” Yeah, he never pulls over. But Tommy and I did today. Because today wasn’t so hard.
My phone only had 2% battery and I’m pretty sure Tommy thought I was crazy, speed walking through the flowers yelling “LOOK how pretty they are!” “Look at the BEES!”
At one point I was smack in the middle of the field trying to pick the perfect flower, (because I only had $1) and Tommy was just staring at me like, my mom, has gone crazy.
But he humored me, and told me the flowers were pretty, just like I thought.
Back to doing hard things. This morning, at one of my doctor’s appointments, my doctor blurted out “Congratulations on having twins!” He didn’t read my chart (or maybe he did, what the heck is in my chart?) I said “Oh, Dr. Lin, my babies died”. He quickly apologized and said he was heartbroken for me.
I am too, I said. Heartbroken. It’s the first time I said it out loud.
It’s a hard thing, missing these babies. It’s a catch your breath, can you breathe again? Kind of hard. It makes everything else fade away. Doctors appointments? Blood work? Great. Give me a Scooby-Doo sticker, I’ll be fine.
But in the hard things, the catch your breath THIS IS SO HARD things, God is still there. Not with a Scooby-Doo sticker. More like a field of flowers. A whole field full. With butterflies dancing all around them. And a toddler, smiling at his crazy mama. A reminder to breathe, a deep breath in lungs that still work. And talk to a God who made flowers this pretty.
If you need a Scooby-Do sticker or a whole field of flowers, let me know, I know where to find them both.
Still thankful, still grateful,
We did it.
On August 6th, 2018 at 8:35 PM I gave birth to our twins: Eliza Joy and Ensley Grace Taylor. They are so perfect and beautiful and now with Jesus.
Our twins were born without unforeseen complications via a c-section at 32 weeks. Their birth was absolutely beautiful which is a true testimony of God’s love and provision for us. Eliza and Ensley died from complications from limb body wall complex the minute they were born. While we would give anything to have them with us, we celebrate knowing they are in Heaven.
Ever since our babies’ diagnosis I looked towards their birth with both agony and anticipation. I wanted to see them, I wanted to hold them, I wanted them to be safe. I wanted it to be over.
I desperately wanted to see what God would do.
I can’t explain what a complicated walk it was to be fully believing in a miracle and also fully aware of your babies’ complications. Often, I believed no one understood. To be fair, we said things like “might lose them, and “if they make it” not because we were unaware of the outcome but because we are fully aware of who God is. Still, we knew what their birth meant. We had twenty weeks to prepare to go to the hospital, have two babies and go home without them.
Their birth story: I went to labor and delivery for an evaluation after leaking fluid and blood at 32 weeks. The evaluation took all day with no answer except a guess that I might have an uterine infection (I did). The doctors did the most unfair thing, they told me I could go home or deliver– it was up to me. You can imagine how impossible that was. I absolutely wanted to deliver, I also absolutely wanted to keep them in as long as possible. No one would tell me what to do. Eventually doctors said delivery was a good idea. We prayed for an easy delivery. We prayed for God to guide the doctors and be merciful to our babies. I’d like to say we weren’t scared but we were terrified.
The doctors had told me in no uncertain terms how complicated delivery could be. Their umbilical cords were extremely short and they weren’t sure how they were going to get them out. Tom shook as he prayed over me, asking God to keep me safe. I wish I had pulled myself together, put on make-up and fixed my hair, which might sound ridiculous but I wanted to feel completely confident going to meet my babies. I knew I might only have minutes with them.
My doctors worked hard to make sure the c-section went well, I ended up only needing a transverse cut, I will always be thankful for that. I had the sweetest nurse who made me feel so much better because I was terrified. Tom came in and 30 minutes after both babies came out. When the doctor announced the babies were out, the room fell silent, neither Eliza nor Ensley were crying. I lost it because I knew what that meant.
I could see Eliza being put into the bassinet but she wasn’t moving. Tom told me to look away but within minutes Tom was holding them both.
Tom did so good, I have no idea how scared he was but he just held them as I stroked their faces. The chaplain was the first to come over and say both Eliza and Ensley lost their heartbeats as soon as they were born.
Our sweet babies. They were beautiful. They were safe. They were born. I was so proud of them.
In case you feel bad for us that God didn’t deliver what we prayed for know that Ensley and Eliza are still the miracles we were praying for. What happened in our hearts the moment we met them and lost them is a miracle. Heaven is the biggest miracle of all.
I won’t tell you it’s not painful, I won’t tell you that it is easy, but I will tell you– peace came over me the minute I saw them. Peace filled my heart, and flooded the room. I’m sure everyone could feel it because I could.
And then joy. Indescribable, unexplainable joy.
We picked the names Eliza Joy and Ensley Grace before they were born because Eliza means God’s promised and Ensley sounds like endless. Together, to us, their names mean: God promised joy and endless grace. Because that is what God promised us through all of this. Joy and endless grace. I also totally have a thing for E names. I was concerned the names might not fit them or be good enough but they are perfect for our sweet babies.
Sweet Ensley Grace Taylor (left) and Eliza Joy Taylor (right)
The hardest part of carrying babies with a fatal diagnosis is not the believing in a miracle part. That’s easy, we know that God can. Surrender, is the hardest part. Trust. Trusting that God knows them, loves them and made every cell in their body. God set them apart, gave them to me and then, took them to Heaven the day they were born. I want my babies with me. Everything in me needs them with me. But as I held them the greatest truth set in, as much as I love them, God loves them more.
He loves them even more.
It’s one thing to believe in God for yourself, but if you do, you have to believe in God for your children too.
So there is this: our pain is great, God is greater.
I know some people thought I was crazy for the carrying the babies as long as I did given all of the complications. At one point I was at risk for heart failure because the babies were at risk for heart failure– it’s called mother mirror syndrome, something that mothers and babies with hard diagnosis go through. A c-section is also major surgery, our doctors tried to talk me out of it. At one point they told me of the risk of losing my uterus, over babies that didn’t have a chance at life (as they put it). I just nodded but what I wanted to say was “bring it on, take my uterus out then because that’s the only way they are coming out, I’m not killing my babies.” Because everything is what you do for your children. It’s just what you do.
There is one thing though, the thing I had to surrender over and over again. I was terrified that my choice to carry them to term would cause them pain. Every time I prayed about their suffering (often), God assured me they would be okay. God would whisper those very words to me “they will be okay”, and “watch and see”. At the time it was confusing because their diagnosis was so bad. But when they were born it made sense. We asked God to not let our babies suffer and He honored that.
I hope you can see there was great mercy in their birth. There is great freedom in carrying a baby as long as you can. And seeing them born. Really there is nothing like it. I would not have chosen this, I never would have chosen this but by carrying twins, fully committed to God’s will for their lives, I can see the beauty that comes from a surrendered life.
People have called us brave. They have called us strong. We are neither. It is not by our strength that we are doing this, it is Christ in us. I remember being broken to pieces in the ultrasound room at twelve weeks. How could I carry babies that I would loose? How do you even do that? The first scripture anyone gave us for this pregnancy was James 1:2-4: Count it all joy. When I read it I said you have got to be kidding me. Count it all joy? This?
But yes. Even in this we have joy. And it’s not leaving us.
Forever will we testify of God’s great mercy for our babies and the great blessing they are in our lives. Because of Eliza Joy and Ensley Grace: our love is stronger, our faith is bolder, our hope is bigger, our fear–our fear is gone. Our lives are better. May our sweet babies forever know how much we love them and how we did everything we could to keep them safe. We can’t wait to see them again in Heaven.
Our friends and family: thank you all so much for your genuine love and support for us. You have shown up for us in such unexpected ways. It is still hard, some days impossible. We are still navigating what this feels like day by day (and always will). But we want to thank all of you for walking along with us. It is okay to not now what to say or what to do– we don’t know either. But we do know that God is good, Heaven is for real, and we can count it all joy. We have such joy– such joy and endless grace. Just as God promised.
Always grateful, always thankful,
**To remember Eliza and Ensley we have set-up a memorial fund in their honor. We find it best to honor them by donating money to other families God has or will put on our hearts who are facing hard or fatal diagnoses for their children. Eliza and Ensley’s lives may have been short but we know there is great purpose in their lives. A purpose greater than we may ever know. We are so honored to be their parents.
Tell us about your miracles. We are just weeks or maybe days away from meeting our babies and I want to hear all about miracles God has already done. In my bible I fast forward to the part where God heals. All of the healing.
True story though, mid-way through our pregnancy a friend sent me a message about a baby who was born with a birth defect. The doctors told his mom to terminate her pregnancy, just like they were telling us. He is now happy and healthy and funny story; I know him. My friend said she wanted me to know that God healed that baby, and He could heal our babies too. We have heard a lot of stories like that.
But when I read her text message, instead of rejoicing in what God can do, I threw my phone across the room and yelled:
DON’T TELL ME WHAT GOD CAN DO. STOP TELLING ME WHAT GOD CAN DO.
Then I fell to my knees on our kitchen floor sobbing.
That baby had one defect. Our babies have multiple defects, two pages listing all of their defects. It’s a list.
So a story of a baby with one defect who survived, I just couldn’t.
I was bitter. Face down on my kitchen floor that day (I hadn’t even cleaned it) I asked God to help me. And every day I ask Him to help me still. God did, He still does, every single day.
I have still been bitter, so bitter during this pregnancy (if you only knew) but I can overcome it by one truth. I know what God can do. Not just what God can do for our babies but what God can do in my heart. That bitterness, and my unbelief are no match for God’s promises.
And when I say, STOP TELLING ME WHAT GOD CAN DO, really I mean never stop telling me what God can do.
Hello Third Trimester.
I am 30 weeks with our twin pregnancy. Y’all keep asking how we are doing.
The answer of course is……uhhhhhhhhhh.
We are not okay, we are not fine. Conversations in our house are centered around how to get through each day. Our hearts are wide open. I think that is a better explanation than we are heartbroken because despite how hard this is, we are not broken. Our hearts are wide open as we navigate each right decision for our babies. We still have great anticipation of God’s best for our situation. It is still incredibly hard.
The twins diagnosis is the same, we are just four weeks away from a scheduled cesarean. I can’t believe we are so close. It felt impossible to get here and then Saturday I had my first set of contractions, they were just the ‘sit down and drink a big glass of water kind’ but I realized, this is almost over.
This is almost over. Our sweet babies are almost born, how we love them, how honored I am to carry them; as hard as this is.
As pregnancies go, mine has been text book except for the babies not developing correctly. As you do at 30 weeks pregnant, I am learning to say yes to only what is essential. Going to work every day is essential because I need my job (Lord help me), steam cleaning all the carpets in our house is essential because it brings me joy. Cleaning our bathroom mirror not so much. Mowing grass would be essential but no one will let me on a zero turn. (what’s up with that?) Drawing close to God is essential, even when it is hard.
My prayer time is just me sobbing mostly but I do it anyway because God knows what I am trying to say and He always leaves me better off than when I start.
Many have asked what they can do to help us and we don’t really know yet. We will never turn away food, we will never turn away prayers. The most helpful thing anyone has said is: I can see how much you love your babies. And that is for certain.
Thanks so much for the continued prayers.
When you have a high risk pregnancy like ours- carrying two babies with a fatal diagnosis, the idea of false hope is something other people think you should avoid. Just don’t have false hope they say.
But our hope is not false.
The first time I heard it, the person I was talking to sighed and said:
“I just hope you and Tom don’t have false hope” I just said “oh, no- we don’t…” and stumbled through the rest of my explanation.
I hung up and stared at the phone.
We do have hope. We have tremendous, peace-giving hope.
Until recently, I have only been talking about the hope I have for my babies with other christians.It’s way easier to talk about hope with people who know the hope you are talking about. Like friends from church or the group of moms I meet with for Mops. And of course with Tom. Definitely not our doctors. How sad to be seen as the parents with false hope.
But in real life, I am asked why I would carry babies with a fatal diagnosis- if that is a wise decision. In real life people don’t know the hope we have and they feel so sorry for us.
In the space in conversation that sometimes feels enormous, I don’t say anything about hope because I don’t want our hope to be perceived as false.
But our hope is not false.
Hope saved my soul when I was seventeen and Tom’s when he was five. Life transforming, soul saving, never-be-the-same hope.
The only thing crazier then worrying about being perceived as having false hope is the idea that our hope could ever be false. People who don’t know the hope we have, don’t know the hope we have.
They don’t know. Tom pointed out the other day as I was going on about people and this false hope thing. Oh man, he is right.
The hope we have for our babies is not because we are religious and follow a code that says don’t abort your babies no matter what. The hope we have is not because someone told us about Jesus or because we believe in acts of healing and soul saving that happened thousands of years ago. We believe in those for today. Right now. We have witnessed them. Actual healing and actual miracles. Our babies are not beyond that. God can. When Jesus saves your soul you are never without hope.
And even if God doesn’t, heaven is our hope.
Our hope is not false.
Thank you for continuing to pray for us. Along with the great peace God has afforded us we believe a covering of prayer is helping us see things we may otherwise not see about our babies and this pregnancy. Things we may otherwise become bitter to- like this idea of false hope. But we aren’t! We are so grateful to each of you who are praying with us and for us for our babies.
All that hope,
You guys are praying for us, like really praying for us and we can feel it.
We are so humbled by your prayers.
Thursday was our anatomy scan for our twins and even though we get ultrasounds every week, this was the big one where the doctors look at all their fingers and all of their toes- which they have!
Our doctors are still giving us the diagnosis of limb body wall complex (or something similar), which no baby has survived but we go to each appointment with an open mind that anything can happen.
I intentionally shared about the babies on facebook the day before thinking maybe some friends from church would pray with us.
Woah, you guys. Woah. I never thought so many people would respond. And you all are still praying! To be honest I was nervous about telling our story on facebook because so many people have questioned why we would keep this pregnancy if the babies have a fatal diagnosis.
The answer is, God is in control and He is good all of the time. Tom came home from work Wednesday night and I said, “Tom, people are praying, like really praying.” His response was what did you expect? I guess I don’t know.
Tom was able to go with me to the anatomy scan and I will always be thankful to his boss for that.
Truthfully, most of the time we have no idea what we are looking at on ultrasound. But it is precious time with the babies. Funny thing: at one point our ultrasound said, “well no hands then”, because one baby’s hands were in a little fist and she couldn’t quite see them. I didn’t even flinch, just thought- add it to the list, we will pray for hands. Limb body wall complex means abnormal findings like no hands, no legs. But then she said, “today”. Meaning baby A has hands but she just couldn’t see them ‘today’. I guess it’s not funny at all but it was to me. Our babies have both arms, both hands, both legs and both feet- that is amazing.
Another funny thing that is maybe not funny at all- we never got to talk to the doctors about the results of our anatomy scan.
The scan took two and a half hours. But I had another appointment to go to. I am pretty sure they still think both babies have limb body wall complex or the equivalent as our maternal fetal medicine told us- no change, one baby has fluid in the abdomen but it’s not concerning and one baby may have a cleft palate.
Still not sure if they will live. Still not sure if they will die.
And that was it. The appointment took all day. But we got to see our babies, we had lunch together (shout out to flamers chicken, our go to at Johns Hopkins’ cafeteria) and best of all we felt God’s grace all around us. All around us.
As I was jogging down the hall trying to find a bathroom, I saw a precious girl standing on her IV being pushed by her mom down the hall. She looked so sick. I stopped right there and felt the weight of it. All of this. What parents will do for their children, what doctors will do to for their patients. And I started praying for her, I said God, give her all of the prayers we are getting, give her all of the healing we are asking for. Give them to her and her mom. We even haven’t met our babies yet but that mom has a little girl alive and she is suffering- it was hard but as God stopped me, He reminded me, there is enough for her and me and the babies and all of us. Oh Jesus, there is enough for all of us.
God is so good you guys. We are thankful for our doctors, for being able to go to Johns Hopkins and for getting to see our sweet babies so often. And the power prayer is real. We are feeling it and witnessing to the truth that God hears our prayers.
Our hearts are forever changed,
Tom and Emily