Brielle’s Life

A Love Letter to David

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I can no longer clip my toenails. So a couple of weeks ago, late at night, David clipped my toenails. As he was doing this, he stopped and said, “Thank you for carrying Brielle. Thank you for doing all of the hard work.” I didn’t really know what to say. He was thanking me as he clipped my toenails. He comes home from work and says, “You’re the best wife and best mommy.” He then leans down and rubs on Brielle, gives her a kiss and says, “Hello baby Brielle! How’s my beautiful girl today? Daddy missed you!” Brielle generally starts moving excitedly when she hears him talking to her and rubbing on her.

David will then begin to clean up the kitchen, prepare dinner, and as I apologize and begin to help him, he tells me to go sit down. He asks me what I’ve found today. And as he takes care of the house and me, I tell him about what new discovery I’ve made today for anencephaly research. He remains attentive even when I can see his eyes glaze over, mostly because not everyone shares the same enthusiasm as I do for cerebral hemorrhaging. We chat over dinner about his day and then he gets up and cleans up dinner. He does this all after having extremely stressful days at work.

Most days, I sit and think, “I do not deserve him.” I’m so thankful for him. He stays strong for me when I can’t physically keep up or emotionally when I’m deep in my own grief. He’s not angry with me for not keeping up with the house, having dinner planned, or waking him up at one in the morning so that he can read to Brielle. He understands and helps me shoulder the burden.

I think what is even more wonderful about him, is that he knows it’s okay to be vulnerable with me too. I don’t need a husband who keeps his hurt and pain from me. I need a husband that I can grieve with. And in those moments I stay strong and let him hold onto Brielle and deal with his own anguish. A few days after we were given Brielle’s diagnosis, I told David, “I need you to be here with me. I need you to hurt with me. I don’t want you to hide it. That wont fix it, it wont make me feel better. It will just make me feel more alone, isolated, like I’m the only one in this.”

And so, as hard as it is for him, he lets himself grieve with me. I think more of him for being honest with me, being honest with himself and how he feels. On the days he can’t keep up, I let him lean on me, and on the days I can’t keep up, he let’s me lean on him.

I love David more now than I ever have. We could have let this tear us apart, let it drive a wedge between us, but instead we’ve chosen to let it bring us closer together. We’ve chosen to use this pain for good. Some days he comes home and we sit and cry through dinner together. Some days he comes home and we laugh and joke about the funny things of the day. He’s with me through it all. He’s there for every good moment and every bad moment. I couldn’t have asked for a better husband or partner through this journey. And Brielle could not have been given a better daddy.

Brielle’s 30th Week!

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Last Friday, August 28, marked the beginning of Brielle’s 30th week! I felt really bad that I hadn’t planned anything special for her this weekend, I mean it’s her 30th birthday! So David brought home cupcakes from Gigi’s (wedding cake, red velvet, strawberry shortcake, and bubblegum), and we threw her a small birthday party. We sang her happy birthday and blew party horns, because we didn’t have any candles. Mommy fail this weekend.

She really liked the bubblegum cupcake, but it was seriously awful. I tried so hard to eat it for her, but really I just couldn’t. So we had strawberry shortcake instead, she dealt with it. We went to Chattanooga this weekend and hung out with some of David’s friends and met his mom, Brielle’s BeBe, for dinner.

Sunday morning I woke up with terrible lower back and lower abdominal pain. I drank some water and laid down for a few more hours, hoping the pain would subside. It didn’t. So I called my midwife and she wanted to see me at the hospital. So Brielle, David, and I spent Sunday at the hospital. This is a big concern, because Brielle has polyhydramnios she is at risk of going into preterm labor (because my body thinks I’m around nine months along).

We were supposed to meet up with my doula Sunday at Starbucks, instead we met up at the hospital. It was wonderful to get to meet Lauren. She is so kind and I adore her. She is another anencephaly mom, so she is incredibly supportive and understanding during this time.

I had monitors all over me to capture Brielle’s heart rate and make sure I wasn’t having contractions. I had to stay very still, and in strange positions to get her heart rate at all. Little Brielle was determined not to be monitored and kept trying to kick it off or run away from it. At one point she kicked it so hard the nurse jumped back and said, “Whoa!”

David and I had fun listening to Brielle’s heart beat. I wanted to see her reaction when we played her music. So I played her Crystal Baller by Third Eye Blind. She liked that! She started dancing and her heart rate started climbing. I then played her another song, she slowed down and her heart rate started dropping, she wasn’t interested in that one. So then I played her Back in Black by AC/DC, she really liked that too, she started dancing and her heart rate went right back up.

I wanted to see how she responded to my voice, so I started talking and singing to her. It was cute. She moved differently, she wasn’t wild (like when she hears music), it felt like she was listening and squirming in happiness. It was much more gentle, her heart rate also began climbing like it did for the music we played her. David started speaking to her too and she moved differently for him too. She gets excited when she hears her daddy. She’s such a happy baby.

I eventually was discharged, I wasn’t having contractions and there wasn’t an infection. So we had dinner at Maggiano’s. I ordered her a strawberry melon soda, oh she loved that! And really what’s not to like? She’s so funny, she loves her fruity flavors.

I’m bummed that this was her 30th birthday celebration. So David and I have a lot of things planned for her 31st, this coming weekend. She only deserves the best of everything.

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Brielle is 30 weeks!
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Her yummy cupcakes, except for that awful bubblegum one that she loved.

The Ignored Defect

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Imagine learning your child has been in a terrible accident. Doctors all over the world tell you your child is terminal. According to these doctors, your child’s life is no longer valuable, your child is, “incompatible with life.” These same doctors turn their backs on your child and leave you to grieve your living baby.

Now imagine learning that a few survived the same diagnosis. So you dig. You read and read. You question those that have survived. And then you figure out the common factor in survival, something no doctor has done or even tried to do.

But you have no way of knowing if your child has that common factor. You have eight weeks to not only find a surgeon to treat your child. But you also have to figure out multiple ways to save your child, in the event that your child does not have the common surviving factor.

Now, knowing all of this, imagine you only have eight weeks left with your child and at any moment your child could die unexpectedly. So you spend as much time as you can loving your child, giving your child everything you have to give, all the while using the rest of your time in study.

Can you imagine the fear? The guilt? The panic?

“What if I can’t figure this out? What if my child dies right before I solve this puzzle? Am I doing enough? Am I spending enough time with my child? What if it doesn’t work? Am I wasting precious time with my child? What if my child dies before I get the chance to say goodbye? Can I do this, can I save my child?”

Does your chest feel tight? Because mine does. And this, this is my life. A constant struggle between pure joy and love for my daughter and constant growing, gnawing fear.

Will I ever know if I gave her enough time? Will I be able to save her and make the time I sacrificed with her worth it? Self-doubt, fear, and guilt are my constant companions as we get closer to Brielle’s due date.

Tonight I asked David, “How do I live without her? If I save others with this diagnosis, but not my daughter, how do I live? She’s all I want. This is all for her.”

If You Like Pina Colada’s

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We had dinner at Red Lobster a few days ago. For those of you who don’t know, Brielle LOVES pineapple. It’s her favorite food. So I ordered a virgin pina colada and pineapple salsa salmon. She about lost her mind, she was so excited. It took her a few minutes to start swallowing after I started eating, but after she tasted pineapple, the dancing commenced!