Love

Our History with March 29

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David

Eight years ago today, I told David I loved him. It was 2:59 AM EST. David and I had been friends for a couple of years, we’d met on a video game (City of Heroes) and had a mutual need for each other. He needed someone who could heal him (me) and I needed someone who could take out bad guys fast (David). Over time we got to know each other and then one day it clicked. It just felt right and strangely it felt like the right time. We prayed about it and we had an overwhelming sense of peace about the relationship.

I foolishly thought our relationship would be an easy one. I was very wrong. Within a short amount of time my parents made it known that they despised David. And for the following five years they did everything in their power to tear us apart. It was horrible, stressful, a nightmare. They’d tear into David and then he’d tell me that it was okay, “Forgive them. I know what it’s like to lose a parent. Keep trying to make it work with them.” And so, we’d keep trying to make my parents see what a great guy David is and that he truly does care for me. And I’d forgive them.

With an already fragile gastrointestinal system, the stress from trying to please them made my health plummet. The pain was so harsh I could hardly walk and food would stay trapped inside my system for weeks. I was literally rotting from the inside out. And after spending six years trying to get a diagnosis for why my health just kept getting worse, I received one (more on that here and here). David stood by me through it all. He went with me to all of my appointments, helped me try new therapies, anything I needed, David was there. By this time, I had been living in Athens, GA for about eight months. And while I was suffering physically and in many ways emotionally, I was still incredibly happy with David.

He selflessly took care of me, loved me, encouraged me and never once complained. When I needed him, he was there. And he always had a smile on his face and an encouraging word. It was through this, that I learned what unconditional love is. I had never been shown such kindness and love before this time.

I eventually had to make a choice, school or my health. I wanted to live, so I chose my health. My parents were not happy with this decision and cut me off. David, once again, stood by me and paid for all of my expenses. He paid for my living expenses, my medical expenses, and anything I wanted or needed. He never once made me feel indebted to him and he once again did it all because he loved me. No strings attached. He amazes me.

Love
After spending a year and a half without my parents and under David’s care and love. My health improved. I was slowly, but steadily getting better. I wasn’t sure I’d ever be right, but at least I was better. David and I took a spur of the moment trip to Paris and it invigorated me. And on April 29, our last day in Paris, David proposed. It was perfect and I was so very happy.

My parents and I reconciled some months after the proposal. We had a common goal, Papa was getting worse, and I wanted him to be there for my wedding. Within three months we had chosen Eureka Springs, AR (a short distance from Papa) for the wedding location. And magically, Thorncrown Chapel had an opening on March 29, 2014. David and I rented a historic mansion for the groomsmen, my parents booked a historic Victorian home for the bridesmaids and we had a beautiful destination wedding. The weekend was full of love and good times with our family and closest friends. It was perfect. And most importantly, Papa got to see it. It had been a long time since I’d seen him smile so much.

David and I had a small reprieve from sadness and then as you all know, last June we were given the news that Brielle wouldn’t survive. Our relationship has seen some very trying times. It has made us stronger, patient, loving, forgiving, and thankful. I don’t know where my life would be right now if I didn’t know David. He has loved me through it all. He has never judged me. He has never been critical. Everything he has done for me has been out of pure unconditional love. He is such a rarity and there are times when I can’t believe that he is my husband.

Married
He asks me all the time, “Why me? Why are you still with me?” And I look at him like he’s lost his mind. I love him. I chose him, because he is the good guy. He’s the best. He’s selfless, gentle, kind, considerate, strong, sensitive, passionate, loving, an amazing father. I could go on and on. And what I really should be asking is, “Why me? Why has he stayed with me? Through everything I’ve put him through, why me?”

If you ever wonder why I have faith, this is why. This is one of many reasons why. I have no doubt that God brought David into my life. And I am eternally grateful. David has blessed me and loved me more than I deserve. I often say to him, “Best husband!” Because he really is, he’s better than I could have hoped for. Happy anniversary David.

A Mother’s Love

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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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Kind at Heart

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David and Bernice during our wedding reception.

David is the youngest of four. There was Rick, Ayme, Nathan, and David. David’s father died February 1998. Within six months his mother’s brother and his mother’s mother both died. A few months later David’s sister developed bone cancer. She battled for over a year and then passed away. A few years later David’s brother Rick was faced with tragic circumstances, developed severe health problems, and passed away. Nathan, living in Bermuda, then moved to Germany, and has been there ever since. That left David to watch out for his mother and Nathan’s son, Matthew. As you can imagine, David has a very close relationship with his mother.

David was always clear that he would be the one to care for his mother and I respect that. She has been incredibly kind and loving towards everyone she meets. And extremely accepting of me. David and I knew this day would come, we knew that eventually we would need to begin caring for her. We just didn’t expect it to happen so soon. David’s grandmother suffered from dementia as well, but it didn’t begin until much later in her life. We expected the same for Bernice, we were wrong.

It’s been challenging at times. I never knew Bernice outside of dementia, and when I first met her she was just beginning to show the signs. I thought she was an odd duck, but she was nice enough so I didn’t complain. I wish I had known her before dementia. I wish I had the opportunity to see her the way David’s family does. I love Bernice for who she is now, but I wish I could know her and have loved her for who she really is. It makes me sad when I see hints of who she once was shine through. I’ll get excited and think, “Are some of the things we are doing helping?” But then she’ll slip back into her fog and I’m at a loss to help her.

And then there are days where she looks at me and speaks with shocking clarity and wisdom. I always sit down with Bernice and explain to her what is going on, what David and are thinking about things, and what we are doing for her. I want her to stay in the loop, she deserves that. Even though she doesn’t understand what we’re doing, she understands that we’re doing something and she appreciates us treating her with respect. So yesterday I talked with her about some things David and I are discussing. And I shared with her one of my concerns, it was about Brielle. I told her I didn’t want to leave my memories of Brielle, but I needed to do what was best for all of us too. Bernice looked right at me and said, “Brielle will always be with you. You’ll always have your memories and she’ll always be in your heart.”

It was just what I needed to hear and what was even more comforting, was that I knew Bernice’s words came from experience. She’s been in my shoes and she knows. She knows how I am feeling, she knows what I need to hear, and even though she’s lost the ability to do some things, she still knows Ayme. She still knows that grief and joy. She understands that I have bad days, that sometimes I need to talk about Brielle, and some days I just need to be left alone. I don’t have to explain myself to Bernice. At one point I did, and she said, “Oh, I know. It’s okay. Don’t worry about me, you just take care of yourself today.” And Bernice will go on and do her best to care for herself or help me around the house.

Dementia is a very tragic disease and those who suffer from it are certainly limited. But I am learning to not underestimate Bernice. She has so much wisdom and love to still offer. She may not always understand everything, but she still understands the spirit of things and she has been a very encouraging and loving presence in this house. I am very appreciative of her and her genuine kindness.

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.

Strength

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Strongest

I think what most people say to me is that I am strong, “The strongest person they know.” And I don’t understand this. I don’t feel exceptionally strong. I feel quite average.

I feel like my “strength” is easily explained. I’m strong because I have no choice. We all face difficult times as we raise our children, each person has a different circumstance that calls them to do what they have to for their baby (no matter how old). My challenge didn’t happen in Brielle’s teens. It didn’t happen as a child. As an adult after a crisis. My time to step up as a parent and mother happened in Brielle’s earliest days. And maybe this is what people find admirable. But really, it is no different.

Brielle needed me to love her. She needed me to protect her and give her the best life she could have. What else was I to do? I could have aborted her, but would you abort your teenage daughter struggling with depression? Your child recently diagnosed with autism? Your grown son who was just diagnosed with cancer? No, you wouldn’t. You may get frustrated. You may not know what to do, but you would do your best for your baby. All I did was the best I could for Brielle. And so I don’t feel exceptionally strong, I just feel like a mother. A mother that was faced with difficult circumstances. And I did my job. I did my best.

Maybe it was that I had the choice. I could have aborted Brielle. Maybe not taking the option is what people find so amazing. As if it was an out, an easy solution to a horrific tragedy. But it’s not an out. It’s not any easier. There’s an entire support group filled with bitter mothers who aborted their babies with anencephaly, hoping it would be an easy out, only to find it wasn’t. There’s no taking back an abortion. There’s nothing you can tell yourself to fill that void. The void of regret.

I am future oriented. What I mean by that, is that I spend most of my time in the future. I plan, think, and dream of tomorrow and the days to come. And I know myself very well. I knew who I would be if I aborted Brielle. The draw of a new healthy baby a few months after Brielle was aborted was appealing. But looking down that road I knew it would tear me to pieces. I’d destroy myself with regret and agony. I would live a life violating my conscious with no way to correct the hole in my heart.

I’m not here to start an anti abortion campaign. That’s too political and I don’t want to mar Brielle’s legacy with politics. But I do want people to understand that I did take the easy out. I knew which of the two options would be the most difficult to live with and I chose the easiest one. I chose to love Brielle. And it wasn’t hard. It’s not hard. I miss Brielle so much. But I get to miss her. I have memories of her. I met her, held her, told her I loved her. None of those things are hard. They don’t require strength. They just require a heart and we all have one of those.

When I go to bed at night, I’ll hold Brielle, sob through “I’ll Love you Forever,” tell her goodnight and go to sleep. And I sleep peacefully. I ache. But my dreams aren’t sad. I am not haunted by worry. By the fear that I made a mistake. By guilt over a new pregnancy that I chose to replace the anencephalic baby I had.

If I had chosen the “easy” option everyone thinks abortion is, I would spend the rest of my life filled with a horrific ache. And a guilt that no one could imagine. I would never have forgiven myself. That kind of pain requires super human strength. And it is not something I am strong enough to endure. I am in awe of those that carry on, silently grieving their loss. A loss that they cannot speak to anyone about. A loss that haunts them. The mother’s who chose the path that I did not deserve our love, support, mercy, and encouragement. They carry a burden that is unimaginable.