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.

Sometimes I look at these things I share and I feel as if I’m reading someone else’s story. Surely this isn’t my journey. Surely that person is not me. This person doesn’t look or speak like me, because I couldn’t possibly be going through something like this. And I’m perplexed. Because how could this happen?
I read all the books, took all the vitamins, ate organic, switched my beauty products to natural or organic products. I did it all right. I followed the rules. I prayed over Brielle’s future before she was even conceived. We planned Brielle’s timing three years in advance. I played the game everyone wants me to play, so who is that person saying she is me?
I’ve waited for Brielle my whole life. My whole life I’ve waited for this time of my life. I’ve always known that my purpose and path in life was not to begin until now. And I’ve waited. I’ve endured and I’ve suffered. When things in my teenage years broke me, I pushed through and survived so that I could be a mom. When gastroparesis took away everything I had and nearly took me with it, I pushed through so that I could be a mom. I have spent my whole life fighting for the right to be Brielle’s mother, to be a mom. Every decision and step I’ve taken in my life has been for this child. Some people search their whole lives for who they are, but I always knew. I always felt as if I was in someone else’s skin, biding my time until I could be myself, until I could be free to begin.
When I read these stories, see these pictures, I wonder who that person is. I have been through enough, so who is this person saying she is me? From the outside my life may have looked happy, but for the past fifteen years I have suffered, struggled, and fought for every bit of happiness I’ve had. I have not had reprieve in so long, this was to be my reprieve. My light in all of my darkness. So who is this woman who says this is my path? This was not to be. I was going to be happy. I was going to see my beautiful little girl, this was not to be my path. I don’t need an answer to why bad things happen to good people. I already know the answer. What I want to know, is will I only know the bad? Will everything that could go wrong in a life find me?
All I want is to see my little girl grow up, I want to see her smile, and live a long, healthy, happy life. She’s not supposed to know this sadness, she deserves a life of sunshine and laughter. If I had the power, I’d move heaven and earth and give it to her. I’d be whatever I needed to be to give her a beautiful and perfect future. I’d bend the will of man to ensure her happiness, all for her smile, all I want is a lifetime with her smile. I want to see wrinkles and smile lines. And I want to hear the laughter of her children. I want to live a lifetime with that future, a future with her.

This may be a more controversial post, but I’m going to say what I have to say regardless. Since Brielle’s birth I’ve spent quite a bit of time thinking about my days as an art student. Artists generally have areas where they excel in, and subjects they generally excel in. I found my niche in figure drawing. For those of you who don’t know, figure drawing “is a drawing of the human form in any of its various shapes and postures using any of the drawing media.”
One of my classes spent quite a bit of time focusing on this. Nude models were brought in and we were taught how to see the human form for what it is. We saw it in shapes, colors, and shades. And we were taught the difference between nudity and nakedness. This is important, because it keeps the artist from seeing the subject as a sexual object or violating the subject’s personhood. Nudity is observing a subject as a form. Nakedness is seeing the person for who they are, exposing them and their inner self. Perhaps a good way to explain this is to think of when a doctor gives you an exam. There’s nothing sexual about that. You might be uncomfortable, but they are just doing their job.
A model would come in (we drew males and females of all shapes, sizes, and ages), pose and we would have minutes to draw the entire figure. We were taught to respect the model and their privacy and we did not speak to them or speak about them. Drawing in this way forced you to quickly take in the shape of the human form and put it to paper as fast as possible. Most times I rarely looked at my sketch pad. I needed to absorb the angles and lines before the moment was lost.
If I had to tell you what impacted me the most from my college education, I would say it’s what I learned in this class. This class taught me to see the human form as God made it. To see it in all of it’s perfection and imperfection. It wasn’t photo shopped or magazine perfect. It was loose, strong, real, beautiful. It taught me balance and respect for both sexes. The human form is incredibly balanced, but what makes it balanced is constant opposing lines and shapes. It’s a beautiful, constant play of angles and lines. Men, no matter their size, always maintain strong, hard lines. I found them harder to draw, because I had to feel and think in an edgier way to capture them correctly, it was harsher on the eye. But women felt like a natural subject to capture. They were all curves, again, no matter their size, they were absolutely beautiful. Their lines were easy, there was almost a laziness to the movement of their bodies. The female form encourages observation and is comforting to look at. As it should be, it creates and nurtures life. Together, both forms make a beautiful combination and are the perfect balance to each other.
I found myself observing the “imperfections” of these forms and finding beauty in them instead. These “imperfections” gave each person their character, it made them unique, special and beautiful. They were beautiful because they were just as they were supposed to be. No matter the imperfection, the form in my drawing pad always came out looking perfect. I remember drawing a female nude, much thinner than me, but noticing she had love handles similar to my own. I looked at the form on my pad and I saw it as beautiful and realized that I was entirely too hard on myself. I was comparing my body to something that wasn’t natural. This was natural and it was soft and beautiful. How could I look at this form and see it as beautiful, but not look at myself and think the same thing?

During my pregnancy, I found myself marveling at the strength of my body and how impressive it is that a woman can make a human. It’s amazing. I found myself being kinder to myself as I realized how incredible it was that I was making a life support system, then lungs, bones, blood vessels, skin, etc. Each week I excitedly checked to see what I would make for Brielle this week. And I would happily tell David what I would make. As my body became larger and larger from polyhydramnios, I found myself once again marveling at just how amazing the human body is. How strong my body was. And how hard it was working to give Brielle the best life she could have, as well as keep me healthy. I was two people all at once. I was and am so proud of myself and my body. And I’ve found a deep respect and love for my body.
However, even though my body was strong and incredible. It needed help. And this is what brings me back to figure drawing. This class taught me that there is always balance. My body is soft, nurturing, it is made to create. David’s body is strong, it has hard lines and angles. My body needed someone to literally pick it up, to support it, to care for it. I needed to nurture and create and he needed to support and protect. Instead of thinking, “I don’t need a man. I’m a woman. I got this.” Which I often do think, I found myself appreciating our differences and seeing the beauty in them.
Now that I’ve had Brielle and my body is going back to it’s new normal, I find myself looking for it’s beauty. There will be moments where I will think negatively about my sagging, stretched abdominal skin, but then I will think about why it’s sagging and stretched. My body just performed something incredible and that soft sagging skin would be a wonderful pillow for Brielle if she were here. My body is everything it needs to be. It tells a beautiful story and I am proud of that story. I’m proud of the work my body did to care for Brielle. And I’m not sure I’d be able to fully see how wonderful my body is if I hadn’t learned how to appreciate the human form and what a beautiful work of art we each are.
(These sketches were not made by me, I found them on Pinterest and used them as examples of the male and female form. If you all would like I can take pictures of some of my work, but it has a lot of frontal nudity that I didn’t think would be appropriate for everyone in this audience.)

Sometimes I want to hurt God the way he hurt me. I want to punish him for taking away Brielle. How could he hurt me that way? How could he let that happen? Have I not been good enough? Is this punishment or some cruel twist of fate? I’ll get so angry and I’ll have a desire to get even with God. I want to inflict the same damage he inflicted on me.
Of course then it hits me, he already suffered the same loss I did. And so I can’t get even. His son died so that Brielle and I could be together for eternity. And then I feel bad for God. I want to console him and help him through the pain. How horrible to sacrifice your son for generations of other children. To know that not all of your children will be with you for eternity. And I ache for him. I now can understand that pain and it makes me sad.
I realize how foolish I am and also how incredibly thankful I am. Losing Brielle has made me understand God so much better. He doesn’t seem quite as out of reach. Rather like an old friend that can hold my hand and offer me a shoulder to cry on. He’s already walked this path, he knows my pain, and he didn’t want this for me. I know he didn’t want this for Brielle or I. I can’t explain a relationship with God, but there is a comfort there that passes understanding.
And when I let my anger and hurt subside I feel his comfort and I understand his pain. The pain he must feel for me, to watch me suffer. He never wanted this for us. But humanity chose and continues to choose this path. A path of anger, bitterness, and hate. We all hurt others, whether overtly or inadvertently. I can’t blame God for this.
David and I have a genetic reason for this defect. Medical professionals have chosen for decades to dispose of these babies instead of learning about them. Due to ignorance and a general dislike of anencephalic babies, there is little known about them and little can be done for them. And those are facts of life. Facts we all have to navigate around.
I don’t know why God didn’t swoop in and save the day, but there must be a pretty good reason, because I know he doesn’t want me to hurt. And so while I’m angry with the situation and I get angry with the world, I am not angry with God. Because this isn’t God’s fault. This is the burden we all carry for living in a world that is less than perfect.