Anencephaly

A Mother’s Love

~ lovingbrielle ~ Leave a comment
When we first received Brielle’s diagnosis and I began to look at images of anencephalic babies, I was scared. Babies with anencephaly are portrayed as monsters or frog like. They are displayed in graphic clinical settings. A google search of an anencephalic baby will leave you disgusted and horrified. And I was scared that maybe I wouldn’t love Brielle or I’d think she was ugly. Will anyone love my baby? The whole situation was terrifying and I had no idea what I was getting myself into.
 
I am a part of an anencephaly support group, I have been since Brielle was diagnosed. And fellow mothers share images of their sweet anen babies. In some of the pictures, the baby has passed and is lovingly cuddled or swaddled in special things just for that baby. Some pictures the baby is smiling, giggling, blowing bubbles, they’re happy, loved. It’s beautiful.
 
I find myself completely heartbroken and in love with everyone of these babies. They’re so perfect and these babies are so loved. Each one, has a story like Brielle’s, a story of love and hope, and trust in God. Each is special. They each had their own personalities, likes and dislikes. A lot of them were active and silly. Each one deserved a future.
 
And so it’s heartbreaking, because I know the pain the parents feel. I know how it hurts to guide your child into death. And it’s heartbreaking, because each baby I see reminds me that another will come and another will die. Each baby I see reminds me of the horrors I saw in the medical community regarding anencephaly. Each baby reminds me of the ignorance of our society, how cruel people can be towards these sweet innocent babies. And it shouldn’t be that way.
 
I can’t imagine a more purely beautiful baby. I need to make a difference for these babies, they deserve it. Brielle had a beautiful birth and loving support from See Baby and Dekalb Medical. The care and love we received is incredibly rare and it should be standard. These babies deserve to be valued and respected. They deserve to be loved by everyone, not just their parents.
 
I know now that I had nothing to worry about. I still can’t get over how perfect and beautiful Brielle was and is. I am so proud of her and I just want to show everyone how cute she was. Brielle, David, and I were blessed with incredible amounts of love and kindness. We’ve been (happily) overwhelmed and I am so grateful. I don’t know how yet, but I will find a way to share Brielle’s story and the love that you all shared with us. Brielle’s life is a story of hope and love, even in the darkest times, and it’s proof of how amazing anencephalic babies are and everyone needs to know how special they are.
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Lisa’s Work for Anencephaly

~ lovingbrielle ~ Leave a comment

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Lisa B. found this picture and added Brielle’s name and the quote. It was so encouraging when she shared this with me and I think it’s beautiful. It means the world to me when people share that they are thinking of Brielle. And I am so thankful for this.

Now, let me tell you how awesome Lisa is. Lisa is a part of the anencephaly community and she makes little bonnets and hats for new anencephalic babies. She donates them to these parents so that they can have cute and pretty things to give to their sweet anen babies. She is selfless with her time, kindness, and generosity. She creates other things for bereaved parents and is always willing to do a custom project for anen parents and bereaved parents. She is truly a very kind and wonderful person and has a very special place in the anencephaly community’s hearts.

The Evening of Brielle’s Birthday

~ lovingbrielle ~ 2 Comments

Trust

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.

Brielle’s First Lake Trip

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Family

This weekend I’ll be in Arkansas having a Wolford Christmas. My grandparents retired to Arkansas a while ago, but my family has been going to Henderson for decades. As a family we all visit for the summer holidays.

The last time I was in Arkansas was for Memorial Day. It was a couple of weeks before Brielle would be diagnosed with anencephaly. The weekend was cold and rainy and most of us stayed indoors. We took one boat ride (highly unusual for us all) the whole trip. Of course it was the first time out for the season and the boat ran out of gas (come to find out someone had stolen our gas). But it was a fun outing. Tessa would be getting married in about a month, so we spent a lot of time going over wedding and travel plans.

Even though it was a lazy weekend and wasn’t the weekend we usually have (we usually spend the whole weekend on the lake and eating, Papa called us locusts), I still wanted to get in the lake. I’ve been in that lake every year of my life, I wasn’t going to miss a year just because I was a) pregnant and b) it was cold and rainy. So Mikayla and Teagan (cousins) and Tessa and Zach (sister and brother in law) all went down to the end of the road and got in the lake. Mikayla just stuck her feet in. And Teagan didn’t last too long (she doesn’t have a lot of insulation). It was really cold. But Brielle and I still went for a swim. I think she had fun. I was starting to feel her move at this point in my pregnancy and she did a few wiggles for me. As we all know, she was a natural swimmer.

I’m glad Mikayla took this picture of all of us. It’s the only picture I’ll ever have of Brielle on the lake. I didn’t know at the time that this would be her only visit to Arkansas. And I don’t think I would have done anything differently, I mean, we even took the boat to the cliffs (we jump off the cliffs into the lake). So she did the major things we do as a family. I think we’ve all jumped, right? Mikayla’s father, my Uncle David, used to swan dive off of the cliffs when he was a boy.

It’s going to be weird being back at the lake and not having Brielle with me. I’m bringing her teddy bear urn, but obviously, it’s not the same. I am excited to see my family though. It’s been a hard couple of years for us all, but it will be good to get together. I’ve missed them.

Happy New Year

~ lovingbrielle ~ Leave a comment

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There is another anencephaly mother who makes awareness images in honor of her daughter Makenna. They are beautiful and a wonderful way to honor other babies lost to anencephaly. She has made pictures of other anen babies with Santa, on virtual ornaments, and more. I can’t even begin to explain what a wonderful service it is to those of us who will never be able to watch our babies grow up. She gives us all a bit of normalcy. This is the Happy New Year image she made for Brielle.