Faith

Bringing Good Into the World

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Sorrow

One of the things David and I began saying after Brielle died was, “Maybe we shouldn’t have any more kids. I don’t want them to be a part of this awful world.” We’d talk about how disgusted we were. David and I have seen some of the worst parts of humanity during our time and research with anencephaly and it has made us embittered.

People are at each other’s throats over politics, we’re plagued with terrorism, corruption, war, hate, and greed. We watch our friends and family lose pieces of themselves in exchange for hate and bitterness. And David and I wonder why we would bring innocent children into such a terrible place, to be surrounded by the darkness of this world.

The world has been much darker in the past, but it is still such a terrible world. And so we talked about it, until one day we realized that you can’t make the world better by avoiding the problem. It is up to us and others to have children and raise them to know what is right and what is wrong. To raise them to be good people.

I feel like we’ve lost sight of that. We (myself included) seem to be more interested in raising successful members of society. We measure success by a paycheck, cars, a house, a tailored suit, and 2.5 kids. But at the end of the day, if I’ve only raised Brielle to be successful, but not caring and generous, what good have either of us done?

The world is always going to be a bad place. And bad things will always happen to good people, its just the way of things. But my children don’t have to add to the darkness. My biggest hope is that I can raise children that are good and honorable. I hope for a world where more people are concerned about loving each other than what their political party is doing. When did that become more important? Why do we hate each other over silly things?

We (myself included) ignore travesty and get so caught up in ourselves, in our opinions and beliefs, that we forget what is important. I hope that I do better. I hope that I am better for our future children. I want them to be better. I want them to do better. I want them to add light into the world, I don’t want them to be consumed with bitterness. A life of bitterness, really isn’t a life worth living.

The Evening of Brielle’s Birthday

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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.

Part Two: God’s Healing Hand

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Part two: Gastroparesis involves paralysis of the vagus nerve. This nerve is critical to the function of the entire body and originates in the brain stem. Damage to it causes problems all over the body. One of the things the vagus nerve does is control contractions of the stomach. Your stomach contracts to pulverize food and push it through to the intestines. Mine was broken, no contractions, no pushing out food. Because of this, I fully anticipated that I would not have typical morning sickness.

Sure enough, I never had morning sickness. I suffered severe nausea for a few weeks, but I never threw up. People would tell me I was lucky, but I was thinking, I wouldn’t call this luck. Things started to feel different as my pregnancy progressed. I could eat more foods and not suffer. My appetite was back, I was actually experiencing hunger, a sensation I had long forgotten.

I found myself loving pregnancy, because for the first time in nearly a decade I felt like a normal person. Each month I felt more and more like a normal person. I had forgotten what “normal” felt like and it was revolutionary to feel what everyone else felt. I loved it. I loved every moment of it. Pregnancy suited me.

Of course you all know the struggles I faced during my pregnancy. And physically it was difficult, but nothing compared to what I had dealt with for the past nine years. But even though I felt better, I would still get sick and could still induce a gastroparesis episode by consuming certain foods.

Throughout my pregnancy we all prayed for healing. We prayed that Brielle would live, survive, a complete and full healing. And we were all heartbroken when she didn’t survive. And while I want to talk about that more in another post, what I do want to share is a strange healing that did happen.

In rare cases pregnancy can cure gastroparesis, for reasons unknown. Of course I hoped for this, but I didn’t expect it to happen. After Brielle was born I fully anticipated that the pain killers they had me on would cause problems and that I would be sick. The smallest dose of Motrin (ibuprofen) would make me violently ill, it had been that way for years. I was taking 800 mg of motrin three times a day and percocet four times a day and had no adverse effects. I thought this was odd, but attributed this to my breastfeeding (pumping) or the hormonal effects of pregnancy.

Yet, more and more time passed and I didn’t have any GI problems. I began to eat foods that caused flare ups. Nothing. No problems. I was hungry two hours later. A normal stomach empties in ninety minutes. My stomach was behaving like it should. Odd. What about my intestines? Strangely, pain free. I did experience bloating around Christmas (one of the more annoying side effects of GI problems), but I noticed I was bloating when I ate highly processed and sugary foods. That’s really not that abnormal. Cut out the junk food and my mild bloating was gone.

While I want to wait until the six month mark to declare myself cured, I find myself marveling at this healing I’ve experienced. Here we had all been praying for Brielle and instead it was me who was healed. Me who has spent the last decade struggling to survive, is normal. Perfectly and wonderfully normal.

At first I felt guilty and it pained me. I didn’t want to be better, I wanted Brielle to live. The healing should have gone to her. She should be the one who gets better, not me. But as time passes I find myself more and more thankful. And completely moved. She fixed me. Her beautiful little life fixed me. All of her love fixed a decade of horrible damage. Nerves that were broken in both of us were cured. And the only slight problems I have are with my intestines (a whole other set of nerves).

And who do I give the credit to? Science? God? Brielle? Could they not all be one and the same? Could not all of our prayers healed me? And could not God have used Brielle and science to accomplish that goal? He is the creator, he did create science. Can I not understand the how, but also give credit to the one who created the how?

I’m still piecing all of this together in my mind. But I’m so thankful. I have a second chance. I was given the opportunity to live, because of Brielle’s life. Brielle’s sweet love healed me. I have a chance now. I might get to grow old now. And maybe I’m not 100% and maybe in a few months I’ll start having problems again. I don’t know. But I do know that right now, I don’t have any problems and that is a miracle.

Christmas Eve

~ lovingbrielle ~ Leave a comment

Christmas Eve marked six weeks since Brielle was born. And for Christmas Eve Mt. Paran hosted a candelight service. Curious about this type of service we decided to attend as a family, and David and I decided there really could be no better way to honor Brielle.

I knew it would be hard. I’ve yet to make it inside the church since Brielle died. Not because I didn’t want to, but because I can’t bare to be there without her. She loved church and it breaks my heart to not feel her happy wiggles. Each week I get closer. Last week I made it to the parking lot and then broke down in tears. We went home.

This week I managed a tight smile to the many attendants, a whispered, “Merry Christmas” and I made it all the way through the first song before I couldn’t bare it anymore.

I didn’t leave. As the choir sang a chilling version of “Mary Did You Know” I dug my nails into my palms and bit my tongue. Anything to keep the tears from coming. They came anyway. I am not weepy, I was not raised to be, and it is contrary to who I am. And yet these tears fell out, no sobbing or sniffling, just tears falling before I could feel them build in my eyes.

I tried not to listen, but song after song was about birth and welcoming a newborn. I turned to David and whispered, “this is torture.” He asked if I wanted to leave, but no. My curiosity had lured me here and I was determined to satisfy it.

I endured. I put on the coldest face I could muster and did my best to turn off every emotion that bubbled to the surface.

And the service was beautiful. The music, the organ, everything. Dr. Cooper spoke about reflecting light, specifically Jesus’s light. And I found myself thinking about Brielle and her life, wondering how I could reflect her light, her beauty, without destroying it with controversy.

As the service began to end, candles began to be lit one by one, neighbor to neighbor. The electrical lights were dimmed and candlelight began to fill the room. At this moment I was grateful we were sitting in the back, visualizing the message through a metaphor was deeply moving.

The service was wonderfully tortuous. Beautiful and happy for everyone else and a reminder of everything I’ve lost. I tell myself I’m fine. I delude myself into thinking the pain isn’t that bad, but Christmas has a special way of displaying grief in a horrifically spectacular way. And I’m not sure which is better, delusional or despondent? Regardless, I will hurt for now, but I hold onto the hope that it will get easier. And that’s okay, I’ll eventually be okay. But for now, I need to be sad. I need to grieve Brielle.