Part Two: Brielle’s Birthday Continued

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I think this may be the best and easiest way to share my memories from the day Brielle was born. I’m including my memories I wrote down for that day from my diary. I’ll post about the OR part tomorrow. This was such a long day and I’m not sure how to properly present it to you all.

“Lynda told me that she was going to put two IV’s in just in case I had a lot of bleeding (postpartum hemorrhaging). She asked me where I wanted them and even though my veins were incredibly difficult, she did her best and put the IV’s where I wanted them.

The anesthesiologist, Dr. Phoenix, came in and talked to me about how the spinal block would work, answered my questions, and asked me some. He was very nice, very young, but very nice. We also met Robin, the something nurse, I can’t remember her title, but she was wonderful.

Jamie came in, it was so good to see her! She saw that I did not have a pillow and was not happy about that. She checked with David to make sure that he had been eating and taking care of himself. He hadn’t been eating, so she and Lauren made sure he would get something. She went off to get him coffee and find me a pillow. Lynda told her that they were short on pillows and ordering more and said maybe she could borrow from triage, but Jamie said she had a secret place and would go there first. She came back pretty quickly, so I’m guessing the secret place had the pillow she needed. Jamie watched over me and kept an eye on me the whole time. She is really a Godsend.

Dr. Armand came in and talked to us about what would happen. He told me that the neurosurgeons at CHOA refused to care for Brielle or cover her head. They had dropped Brielle as a patient and never notified us. He said they might be talked into it if she lived for a while. I told him that if she needed a covering there were surgeons in St. Louis who had experience with this and I was willing to go there. He seemed fine with that idea, we both were of the mindset that we would make the best call for that if the situation called for it. He said they wouldn’t use dura, but would use wet surgical gauze and this warmer for preemies. I’m not sure what he was saying, I was so disoriented focusing and worrying about Brielle. But I trust Dr. Armand.

His assistant Linda came in and introduced herself. She was very kind, she is also a minister’s wife. As she was talking, Jamie and her boss came in and Jamie introduced her. I felt bad because Linda was excusing herself so that I could speak to Jamie’s boss. And I couldn’t focus on both. But the other woman was incredibly kind. She had been following my story as well and was moved by our faith and journey with Brielle. Her, Jamie, Lauren, and David circled around me and Brielle and prayed over us. It was very comforting and she was very kind. She loved on me and told me how much our story meant to her and then she left.

We then met Saan, Dr. Bootstaylor’s assistant. She was kind, the meeting was short. I was surprised at how busy the morning was. I had been started on IV fluids and would make my way to the bathroom and have alone time with Brielle. I would pray hard and tell Brielle what was going on. I’d love on her, cry, and tell her this was the time she needed to be strong. I’d sing to her and love on her. I was so scared, but she was such a good girl all morning and moved around happily.

My family arrived around 11. Ari, Grandma, Bernice, Tessa, Zach, Dad, and Mom all arrived and really filled up the room. They came over and loved on Brielle and asked how she was doing. I tried reading Brielle “On the Night You Were Born” but couldn’t make it past the first page. So Mom read it to her for me. She also read Brielle “Silver Slippers” and “Froggy’s First Kiss.” Brielle had fun listening to her books and it made me feel so much better to know she was hearing some of her favorites before she was born.

I went to the bathroom again and talked to Brielle. I rubbed on my belly and told her how much I loved her. I told her how scared I was and that this was the big scary thing that she needed to be strong for. I prayed so hard, so very hard and cried my eyes out. Mom knocked on my door and asked if I needed help. I told her I was fine. She couldn’t hear me, but I had been in there for a long time. I cried some more with Brielle and felt her wiggle around. My sweet, sweet girl. I remember wiping my eyes and making sure I looked presentable and then opening my door. Mom asked if I was having some alone time with Brielle and I told her yes.

I sat in my bed for a while and just listened and zoned out thinking of Brielle. Everyone was talking excitedly and was very happy. I was a ball of nerves, things just felt like they weren’t going to be okay. I rubbed on Brielle and did my best to be strong, keep it together, and be happy for her. And I did, I pulled myself together.

At one point I saw my Mom go and hold hands with Dr. Bootstaylor and say something to him, he said something back and I wondered what was said there. I asked Mom days later and she told me that she had thanked him for taking care of me and respecting me and Brielle. She said that he said, “Of course.” He is always so humble.

David and Lauren were given gowns, booties, and hair nets to put on. Of course David’s feet were too big for the booties, so Jamie had to search for an alternative. She came back with boot booties and David was able to use those to cover his feet, but it took a bit of work (David wears a size 13).

I started reading her “It Will Be Okay” and was staying positive and upbeat for her. I wanted her to hear it right. Everyone stopped talking and started listening to me, I didn’t anticipate that. Brielle wiggled and danced, she was very happy. Dr. Bootstaylor came in and I stopped reading. We went over a piece of paper, he signed it and then asked if I was ready. I asked him if I could finish reading to her and he said yes.

So I picked the book back up and began reading to her again. I started crying at the part where Little Seed says, “Oh no, please no! I don’t want to go!” And Dr. Bootstaylor came and sat beside me and wrapped his arm around me. I cried through a couple of pages and then pulled myself together while Little Fox looked for Little Seed. Dr. Bootstaylor was very nice and rubbed and patted my shoulder, like a consoling father. Brielle did little kicks and little wiggles and I laughed to myself as I read to her. I finished the book as strong as I could and rubbed on her the whole time I read. I closed the book, nodded my head, and said I was ready. Dr. Bootstaylor gave me a squeeze and got up. Then everyone came to me, like a receiving line, gave me a hug and told me it’d be okay. Some of them would rub on Brielle and hug me. I’m sure my face was etched with worry.

I got out of bed and helped David get his gopro and hair net situated. I also put a cap on my head. That was a funny situation. I was joking with everyone and getting us all laughing. We were all comfortable with each other, but we all knew and understood what was about to happen and there was a bit of anxiety. Once we were all ready, we all circled around near the door and looked to Dr. Bootstaylor. He rocked back and forth on the heels of his feet and seemed to just take things slow. Later I’ve come to appreciate that, he was in no rush to end my pregnancy. He nodded his head and said alright, let’s walk to the OR. I said that I was happy to enjoy walking before the surgery. I wouldn’t be doing too much painless walking after Brielle was born.

As we left the room, my family was waiting in the waiting room next to my recovery room (they had small alcoves on the labor and delivery floor where family could wait). They came back and Mom hugged me, as did everyone else. They all looked a bit worried, but optimistic. I made a joke about our “blue hair” and Mom said we looked like smurfs, I told her I’d always wanted to look like a smurf. Smiling and laughing we left each other and began to walk towards the OR.

I was happy, laughing and joking for most of the morning. I don’t want to forget that Brielle had a good morning, she was loved on, snuggled, talked to, read to, sung to. She had a great morning. She was very blessed and surrounded with love and prayer, she really was her whole life.”

Trusting God Through the Pain

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When I found out I was pregnant, I was beyond excited. Not just for the obvious reasons. Last Thanksgiving we got the call that my Papa’s cancer had moved to his brain and was quickly growing and he would have to be put on hospice. A year ago today, my Dad and I drove to Arkansas to help take care of him. For the next month my family helped take care of him. It was a very difficult December, to say the least, and a couple of days after we had our Christmas with him, he passed away. I wasn’t looking forward to my first Christmas without my Papa, but I was going to have a sweet new baby for Christmas. God had blessed me with a special gift that I’d treasure, that would bring joy to not only me, but my family as well for Christmas.

One of my first thoughts when I found out Brielle had anencephaly was, “What kind of sick joke is this?” To take my Papa and my daughter away from me within a year of each other, on Christmas? What kind of sick God does something like that? I was angry, but mostly deeply, maddeningly hurt. I’m still not sure why God gave us a baby on the first try, that would be born around the holidays, and then die. I hurt, but that anger and hurt aren’t at or from God anymore.

I have a lot of confusion, one day I’ll come to terms with everything. For now, I feel like an open bursting wound. And I hate it. I hate that this is happening now, at Christmas, one of my favorite times of the year. I love Christmas and this is too much.

While I hate all this pain, I’m not going to let it consume me. We get to choose how we handle what the world throws at us. We don’t get to choose what happens in our life, but our attitude we do get to control. David and I won’t be miserable, we’re going to grieve, but we’re not going to live in darkness.

This weekend is David’s birthday. We’re going to see The Nutcracker, take a Christmas historic home tour in Marietta, take the dogs to the farmers market in the square. I’m going to wear myself out and we’ll end up watching a funny movie to distract us from the grief of watching families with young children.

We’ll lean on each other and lift the other up when we’re too deep in grief. We’ll think about how happy Brielle is. We’ll remind each other that we’re not grieving Brielle’s fate, we’re grieving our own. The loss of a perfect baby that was too good for our world. We’ll have a bittersweet weekend.

I’ve said this over and over again, but I cannot stress it enough, the loss of Brielle is horrific, but her life was not. We crammed a lifetime into her ten months here with us. She was the greatest light we ever knew, she brought more joy into this world than we could ever imagine. I’m not going to let that be overshadowed by my pain. I don’t know God’s plan, but I know her story isn’t over. I’m just along for the ride, and I’ll constantly seek out ways to honor Brielle’s legacy. She’s too wonderful not to.

Life After Death

We brought Brielle home yesterday (we put her ashes in a soft white teddy bear, I’ll post about that later). And I spent quite a bit of the day wondering what happens now. I don’t mean for my life or David’s lives. But what happens in Brielle’s world? What does she know? Of course, I fully believe she is in heaven. I know that much. But then that’s it. And no one has the answers of what happens next, what life is like after death.

So I wonder. Time could be different there, are years more like moments for her now? When David and I come to be with her will it be as if only a few moments passed? Will she really not know a world without us at all? This is a comforting thought, she’ll never have to miss us and we can pick up where we left off. But then it’s not comforting at the same time. I don’t want her life to stand still, I want her to be free to do whatever she wants to do. I want her to be more, she was such a lively wonderful baby girl, she should have the opportunity to do more.

So is she having a whole lifetime of fun and adventure? Is she seeing and exploring things? Meeting new people, playing with her deceased family? I know they would take good care of her. Is time faster, more fluid? I have no idea. But if time isn’t slower, then what? What will it be like for her while we are away?

When I talk to her can she hear me? I know a lot of people believe this, but really, none of us know. So if she can hear me, great, I’ll talk to her all the time! But if she can’t I’m just a crazy woman talking to the air.

Can she see us? If we take her on adventures still, will she see them? Will she know we did those things for her? Will she know how much we miss her? I know she knows we miss her, but can she see how much? Do I want her to see that? Do I want her to see me grieve for her? Not really. She hated it when I cried.

Is some part of her still connected to her body? If I tote around her ashes in her teddy bear (which I’ve dressed in one of her onesies), talk to her, sing to her, read books to her, will she know? Will it make a difference if it’s with her ashes or not?

How does this part of death work? What do I need to do to take care of her? Nobody knows.

All of these questions, I feel, are critical to how I learn to live again. I need to know how to mother her still, I need to come to terms with a pattern, a way to grieve her. To show her I love her and respect her life and legacy. And I’m not sure how to do that.

Do I swaddle her cremation urn bear thing, dress it in some of her clothes, read her books to it? Do I leave the bear in her closet or her bassinet? Do I take the bear with me on vacation? What do I do with this little piece of her, her “suit”, as David calls her ashes. I don’t know. I don’t know what to do. When does grief become certifiable? Nothing feels right, it all feels terribly wrong. It is terribly wrong. And this is where I am, in this horrible world, trying to figure out how to love Brielle who is a world away.

Psalm 82:3

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Two years ago this was my devotional for the day. In my status I added that this was what I wanted to do with my life and I wanted my friends and family to hold me accountable. Little did I know that two years later I would have just given birth to the most beautiful little girl ever. Even though no one wants a baby like Brielle, David and I wanted her. We want her more than anything. I know that David and I made a difference in Brielle’s life and she showed us how much she knew and appreciated it after she was born. I am so grateful for the time we’ve had with her. And for welcoming all of you into our lives. You have loved and prayed over our little girl. You all have blessed her more than you will ever know. Thank you for joining us through this and loving Brielle.

Our Last Sunday With Brielle

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Mommy and Brielle.

Brielle was a sleepy head on Sunday. I think she wore herself out. Brielle didn’t really dance to the music, she liked the last two songs before the sermon. The sermon was very good and about God’s timing and plan. How he sometimes answers very quickly and other times takes forever to answer prayers. This was encouraging to me, I so hope that God reveals a complete healing for Brielle in a couple days. I’m coming to accept the situation no matter what happens and trust God though this. But, like I kept saying to God during this service, I’m so scared, I’m scared of losing my baby. I need to mother her and it breaks my heart to think of losing her. I know God understands this and I hope he spares me that pain.

We went to Stoney River for lunch. I had my usual and introduced my family to the place. They were all big fans of Stone Pups. Which who isn’t? Brielle was so excited for her steak and au gratin potatoes. Especially the potatoes. It was so cute! She finally woke up when she started tasting her favorites! We all had a great time out and laughed a lot, caught up on things, and just enjoyed our time. We had a fun lunch and I enjoyed feeling Brielle kick around and punch around. She felt very happy.

On the way home I played her playlist and “Iron Man” came on. She loved it and danced around. Dad said she was going to be a metal head. She is so funny. That evening we started Beauty and the Beast (my favorite Disney movie, I wore the tape out when I was a little girl). Brielle really liked the movie! She was scared of Beast at first and would hide in my tummy when he would roar or let his temper flare. I kept telling her he was really nice on the inside. Eventually she came around. Tessa brought over snickerdoodles during the movie and Brielle went crazy for them! She did her big kicks, where my belly jumps. Mom got to feel those, and I’m glad she did. By the time we watched the movie, Brielle had finally adjusted to my family and was getting back to her wiggly happy self. Mom got to feel her kick quite a bit. Dad tried, but he was on the wrong side. Tessa tried too and said she felt water moving, but couldn’t really feel Brielle. It’s one of the negatives about having all of this fluid. Brielle had a lot of fun tonight. She danced and wiggled.

She responded to the movie and loved her cookies! When we watched the funny movie tonight that we had watched the night before, she started wiggling again too. I think she likes that movie too, or just likes that David and I are laughing so much. She is so aware, it is incredibly hard to believe that part of her brain is missing. I spent some time after the movies just hanging out with my family and that was nice. It was nice just being around them, I see them so little that it was nice to catch up.

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