Lesley W. shared this with me and I love it and think it is just perfect, so I thought I’d share it with you all too.

Lesley W. shared this with me and I love it and think it is just perfect, so I thought I’d share it with you all too.


When I saw Brielle for the first time my heart broke. And at the same time I had peace and suddenly had a strength that I could not explain. I swallowed my pain and gave her my all. David struggled, he struggled with anger, bitterness, and hurt for the rest of the day. We both struggled with heart break. I don’t want anyone to get the idea that we both aren’t haunted by this day.
Yet, surely you have all seen how blessed we were with loving family, friends, and medical staff. We were truly, beyond blessed that day. God was in every moment of that day. As Brielle was put on my chest all I could think was, “Okay. This is it.” And as I looked at her poor little brain I realized what a miracle it was that she was born alive at all.
Brielle had maybe 5-10% of her brain. There really was nothing there. The tissue had not developed well at all. The venous structures were not strong, but instead very fragile. Her brain stem had not even fully formed. Brielle’s heart rate was 60 beats per minute when she was born. That’s less than half of what it should have been. She never took a breath. And yet, she managed to twitch and respond to David and I. She remembered the lullaby I would sing to her. She understood, “I love you.” She was able to grip David’s finger. She was able to cry. She lived far longer than she should have. All of those things are amazing. And David and I feel, were given to us, her ability to say goodbye to us and for us to do the same, was a blessing. She shouldn’t have been able to do all of those things on her own. And she did.
At 34 weeks a component is introduced into amniotic fluid. I’ll spare you the chemistry talk, but in babies with neural tube defects, this component is elevated. It essentially eats the neural tissue. David and I did see a decrease in activity, in cognizance from 34-37 weeks. I told myself she was just tired. I refused to accept that she was lost. We had seen a membrane on the ultrasound, it would protect her. It didn’t. She wasn’t just tired and unresponsive for three weeks. The weekend after my birthday, October 18, I talked about how I felt something inexplicable.
Church had been on everything David and I had been studying and praying. We went down and Brielle was prayed over for healing. I felt a warmth in my belly and a stretching. She began to respond again. She began responding to music, dancing, wiggling. She was back to her happy self. We assumed that healing had begun. Looking back, I think it was more of a gift. And who knows, maybe I’m crazy. But after going through everything, it felt more like a merciful gift. Her whole life felt like that.
It felt as if God was saying, “She won’t survive, but I can give you more time. I can bring her personality back. I can give you the physical strength to carry her and the extra fluid. I can surround you with love. I can let her say goodbye to you.” There’s no denying that there was a sudden change that day. She did improve. I improved. God kept us safe the entire pregnancy.
We survived a near car wreck with a semi, a near plane crash (fire trucks were waiting for us when we landed), and a heart problem that suddenly vanished. I had the physical strength to carry not only her, but obscene amounts of fluid. The most fluid one of the nurses had seen in forty years of nursing.
I don’t know why God didn’t completely heal Brielle and let her live. I don’t doubt that he can. I still believe he can. But I don’t know his reasons. One of the things David and I prayed for was that if she was going to suffer in life to not heal her. I did not want her to struggle or suffer tragedy. I prayed that he would spare her that kind of future. Regardless, David and I don’t know why she died, why he didn’t step in and heal her the way we wanted. But I trust him. That doesn’t mean I don’t get mad or frustrated or struggle with his decision. But I do know, we were blessed through this entire pregnancy. And I’m thankful for all of the good things we were given, even though it hurts.

On the day Brielle was born, after everyone had left and David and I were alone, David came to my side and said, “I’m mad. I’m mad at God. I was so sure he had healed her.” That morning I had posted a picture of Brielle, David, and I getting a picture with the Coca-cola polar bear. Earlier that evening I had checked the Loving Brielle page and in a single day there had been over 35,000 people who had come to the Loving Brielle page and had seen her story.
On average, the Loving Brielle page reaches around 8,000 people per week. This happens by people liking, sharing, and commenting on the pictures and posts. Somehow, in one day her little life reached 35,000 people! That is incredible.
I grabbed David’s hand and said, “I know. I hoped for the best too. But David, Brielle reached 35,000 people today. I don’t know why God didn’t heal her and let her live, but her story isn’t over. God has a bigger plan for her. Look at everything that happened today. Her story isn’t over. We just need to be open to God’s plan and trust him.”
He wiped at his tears and said, “I know, but it still hurts so much.” And it does. We both know that there will be more to Brielle’s life. Clearly God has a plan for us and for her legacy, but we have no idea what that plan might be. Her absence is felt every moment of everyday. And it hurts constantly. And we both get upset with God.
And I think that is important. I think it’s healthy to be upset with him. I think he expects it and I don’t think he is angry with us for being angry. He understands. And I think that is one of the most comforting things about losing Brielle. I can’t be too angry, God would have spared her if it had been for the best and I know this because God also lost his son and he wouldn’t wish this pain on anyone else, especially his own children. And so I know, that like Jesus, it must have been necessary for Brielle to pass now. I may never know the reason, but I can trust that God did not heal her because it was what was best for her.
That doesn’t mean that I don’t hurt. Because I do, quite a bit. But she’s safe and happy. She’s loved and only known love. He did everything he could for us and he made the loss of her life as loving and gentle as it could be. At the end of the day David and I trust him and we trust his plan for our lives.

David and I went to Disney World when Brielle was eleven weeks. We had a horrible honeymoon and this was one of our “make up” trips (we’ll be making up that trip for a long time, it was that bad). We had originally planned the trip thinking it would take me a while to get pregnant, like a few months at least. Little did we know that I am part rabbit. Needless to say I didn’t ride a lot of the rides, but we still had a ton of fun. We also used this trip as our pregnancy announcement picture.
We took all kinds of pictures with Disney characters and even had dinner in Cinderella’s castle and took pictures with the Disney Princesses. At the time I felt a little odd taking my picture with a bunch of adult women, my age, pretending to be a princess, it was like a weird Halloween. Looking back I’m so thankful that I did all of those things. We had so much fun and Brielle had a trip to Disney world!
She got to ride the Little Mermaid ride, eat in Beast’s castle, and have the “grey stuff” (it was delicious). We went to Epcot and “traveled” the world together. We hung out in Hollywood Studios and took lots of pictures there. And while we had planned on going to Animal Kingdom, I was way too tired for it. I couldn’t feel Brielle moving yet, so I’m not sure what she was aware of, but I’m still happy we made these memories with her.
The whole time we were there I kept wondering what it would be like to have a little girl at Disney World (I was certain I was pregnant with a boy). Little did I know that I did have a sweet little girl in my tummy. I was really tired my first trimester and didn’t know if it would be smart to go ahead with the trip, but we did it anyways. I’m so glad we did. At least I can say we took Brielle to Disney World. She really was a very lucky little girl.
Side note: It was super humid, no surprise there, and really hot. Not crazy hot, but just hot. And the onesie I’m holding was the first thing we bought for Brielle.

One of my favorite things to do is thrift shop. And one weekend, early in my pregnancy, I dragged David along to look for antique baby things (we found an old rocking horse). While we did get the rocking horse, we mostly were sidetracked by the many albums for sale. We found a lot of great things, and we also found an entire John Travolta collection.
Maybe some of you are fans of his musical works. Personally, I’ve never listened to it, but finding his entire collection was just too good. David and I had a great time laughing at the hilarity of it all. John Travolta stayed at the thrift store, but we came home with the Best of Bread and a Jim Croce album.
I love this memory of David, Brielle, and I. We were optimistic and looking forward to a life with Brielle. We’d find out a few weeks later that she had anencephaly, but at least in that moment we were all happily making fun of John Travolta.