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.

Our Trip to Arkansas

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Brielle with her Papa. Side note, Grandma is not dead, but her marker is ready and waiting for her. We’ve all found this to be a little odd and uncomfortable, Grandma especially so.

 

Our trip to Arkansas the weekend of January 9, was a very nice trip. It was a short trip, but David and I were so happy to spend that time with my family. Everyone was so kind to us. As a family we went to see Papa at the cemetery. David and I dressed Brielle up and we took her to see her Papa.

The last time I visited Papa I was telling him about his new great grand baby. Like I mentioned earlier, we would find out in a couple of weeks that she had anencephaly, but at that time I thought Brielle was healthy. I told him about my baby and the pregnancy so far. I told him how much I wish he were here to play with her and that I wish he could get to know my baby. I tried to stifle sobs as I wiped mud off his marker. It broke my heart to think of my baby never knowing my wonderful Papa. 

This visit was different. I wasn’t alone with him and we were all struggling with our own grief in that moment. I put Brielle down on the marker with him and David took a picture. His marker was clean from the recent rains and I found myself strangely happy and incredibly sad. It was very strange. Papa does know Brielle. They’re playing together and he’s probably spoiling her rotten. And it felt good to see them together, just like they are together now. I know without a doubt that he is making sure everything is just perfect for her.

What was sad about it all is that I just wanted to be with them. I didn’t want to imagine them in a moment, I wanted to be with them in a moment. As David and I walked back to the car I said, “I never thought I’d lose my daughter and my Papa within a year.” I felt defeated. And I accepted it. I’m without two of the people that loved me unconditionally. And I have to go on for the rest of my life with a little less love in my life. I can’t change that. But at least they have each other and they aren’t gone forever.

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Brielle is meeting her Papa!

Brielle’s First Snow

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Trying to hold Rosie still, so we can get a picture.

I was going through all of my pictures since Brielle was conceived, wondering what we did before we received her diagnosis. And I came across these pictures. I was sadly anticipating the first snow without Brielle and little did I know, she did get a snow. It made me so happy to see these.

Brielle was just a little poppy seed at the time and I have no idea what she was aware of, but still. She had a snow! She was there. Microscopic, but there. I’ll be sad when our first snow comes and she isn’t with us, but I won’t be as sad. I can at least think back to this moment, which I documented very well.

Emmy loves snow. And on this day, Emmy woke David and I up, because she could see the snow outside. She was running around, jumping excitedly, giving us her “awoo’s,” and finally jumped in bed with us to let us know she was ready for her playtime. She just goes wild in it. Rosie on the other hand isn’t that big of a fan. She doesn’t like the cold, and is kind of confused about the function of snow. Emmy sees it as something to play with and Rosie can only deduce that it is something you eat.

While Emmy goes into a frenzy and chomps down on frozen sticks, Rosie and I play eat the snow ball. I throw a snow ball and she runs after it and eats it. She then proceeds to try and eat all of the snow in the yard. Thankfully Emmy keeps her distracted and will induce a frenzy like state in Rosie as well. And then it’s just wild dog babies everywhere.

I’m thankful that this snow happened while David was home and that we got to have such a great time together as a family. One of Brielle’s first “memories” was all of us laughing and playing in the snow. I think that’s a pretty great way to start out a life.

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Brielle’s First Lake Trip

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This weekend I’ll be in Arkansas having a Wolford Christmas. My grandparents retired to Arkansas a while ago, but my family has been going to Henderson for decades. As a family we all visit for the summer holidays.

The last time I was in Arkansas was for Memorial Day. It was a couple of weeks before Brielle would be diagnosed with anencephaly. The weekend was cold and rainy and most of us stayed indoors. We took one boat ride (highly unusual for us all) the whole trip. Of course it was the first time out for the season and the boat ran out of gas (come to find out someone had stolen our gas). But it was a fun outing. Tessa would be getting married in about a month, so we spent a lot of time going over wedding and travel plans.

Even though it was a lazy weekend and wasn’t the weekend we usually have (we usually spend the whole weekend on the lake and eating, Papa called us locusts), I still wanted to get in the lake. I’ve been in that lake every year of my life, I wasn’t going to miss a year just because I was a) pregnant and b) it was cold and rainy. So Mikayla and Teagan (cousins) and Tessa and Zach (sister and brother in law) all went down to the end of the road and got in the lake. Mikayla just stuck her feet in. And Teagan didn’t last too long (she doesn’t have a lot of insulation). It was really cold. But Brielle and I still went for a swim. I think she had fun. I was starting to feel her move at this point in my pregnancy and she did a few wiggles for me. As we all know, she was a natural swimmer.

I’m glad Mikayla took this picture of all of us. It’s the only picture I’ll ever have of Brielle on the lake. I didn’t know at the time that this would be her only visit to Arkansas. And I don’t think I would have done anything differently, I mean, we even took the boat to the cliffs (we jump off the cliffs into the lake). So she did the major things we do as a family. I think we’ve all jumped, right? Mikayla’s father, my Uncle David, used to swan dive off of the cliffs when he was a boy.

It’s going to be weird being back at the lake and not having Brielle with me. I’m bringing her teddy bear urn, but obviously, it’s not the same. I am excited to see my family though. It’s been a hard couple of years for us all, but it will be good to get together. I’ve missed them.

Heartache in the Little Things

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We met my cousin and his girlfriend for breakfast a few weekends ago. They had come to Atlanta for a concert. My cousin has a little boy who really is the cutest thing, he’s a very happy and smart boy. I asked my cousin what his son wanted for Christmas and he told me the things he was obsessed with at the moment.

I was surprised how much it hurt hearing about the things he liked. It didn’t have anything to do with my cousin and his family. And I wouldn’t want him or anyone to stop talking to me about their children and their lives. But it hurts because I immediately began to wonder what Brielle would be interested in at that age. Two of my cousins as young children have loved dogs and dinosaurs and I found myself hurting because I wanted to know if Brielle would have been the same. I later asked David if he thought Brielle would have liked dogs, he grabbed my hand and said, “Probably, she loved her big sissies.” Brielle would wiggle around when she would hear me call Emmy and Rosie (our dog children). She’d love it when I’d play games with them and she loved feeling them rest their heads (or half their body) on my belly.

I have thoughts like this all the time. I’m sure it’s normal. Watching someone with a stroller and thinking, “I should have a stroller.” Folding Brielle’s newborn clothes and thinking, “I wonder if she’d still fit in these now.”

I came back upstairs from the basement the other night, I had been working on David’s media room and had been down there for hours. I found myself wondering what I would have done with Brielle during that time. It’s like I have a double life or a split identity. I really can’t explain it well. I find myself living the life I am in now, but always wondering what I would be doing in that moment if Brielle were still alive and healthy. Every moment of every day she is on my mind.

When I get in the car I check my mirrors and immediately think, “I should adjust my mirrors so I can see Brielle.” And then I immediately correct myself. She’s not here to check on. I go on. Everything goes on. But I never stop thinking of her. Wondering. Wishing. It hurts. It hurts in that “I’ve accepted this” way. I’m not losing my mind. I’ve accepted she’s gone and it hurts. It just hurts, all the time.