Juliana says Goodbye - Part II

That first night after we lost Johnny, after Juliana was asleep, I remember talking with Lea and just being in a state of total disbelief of what had happened. It was a Sunday night, 4 weeks ago tonight. Even now there are moments where we just can’t believe what has happened to us, and to our family. Johnny’s gone….sometimes it’s just almost impossible to grasp. But you keep pressing forward, because you have to, for each other, for Juliana, trying to come to terms with what has happened as best you can. And Juliana continues to come to terms with it, too. She has made a lot of progress in the past few weeks, and I will attempt to share how things have evolved for her with this post.

Juliana slept okay that first night, but after crying during the bedtime routine. She was already starting to process the emotions of losing her little brother. It had been an emotional day for her. She also woke up earlier than normal on Monday, the day after we lost Johnny, crying some that first morning. Monday and Tuesday were filled with countless questions from Juliana. She was crying about Johnny now and then but I wouldn’t describe it as showing significant emotion yet, we knew it would catch up to her. And that was okay. We knew things had to evolve for her on their own schedule, as she processed things, and worked through them. We were told that she would ask many, many questions to test that the answers were consistent, and she began to do just that. The questions were all centered around three basic themes:

Where is Johnny? - He’s in heaven.
Why is he in heaven? - His heart needed fixing and the doctors couldn’t fix it so he died.
Why couldn’t they fix his heart? - Sometimes things that are broken just can’t be fixed, no matter how hard everyone tries to fix them.

The questions continued, as did our answers. Often she would ask the questions, we would answer, and she would be on to other things, completely accepting our answers at that moment until she needed to ask again, which was fine. She could ask as much as she wanted to.

She was often a great comfort to us during those days right after we lost Johnny, which at times was almost alarming to us. We just didn’t want to put her in a position where she would feel responsible for caring for us, as silly as that sounds since she isn’t even three years old yet, but it would seem possible to do this. As long as it didn’t get too out of hand, we had been told that it would be okay, and it was her own way of being involved and processing what mommy and daddy were going through. I remember crying with Lea and having her bring Kleenex to us to dry our eyes. We wanted to be real with her, to show her the emotion we were feeling, without causing her distress that she wasn’t safe. Through the process I realized that much like everything with a young child, you are modeling for them how to do things and how to live, to love, and to grieve. She would grieve through this as well as she observed us dealing with things in a healthy way, so it was important to try and share the experience with her from within a positive framework.

Wednesday she had her first real time of letting out significant emotion and crying hard for Johnny. It was pretty rough, and the crying lasted a long time. It was in the evening, at bedtime. We had noticed earlier in the week when she was starting to cry for Johnny that her cry was a special cry, unique for her, one that we had never really heard before. In some ways it made sense, because this was such a special and different kind of sorrow for her. Lea was helping her go to bed that night. She held her longer than normal, until the crying subsided. She woke up in the middle of the night, crying again. I went in to hold her, and held her for a long time. I remember asking her if she could tell me what was wrong. Over and over she would say, “I don’t know.” We became aware that she would show emotion but couldn’t link it to Johnny, missing him, and the sorrow she was feeling about him. We would talk to her about it and try to help her link her emotions with the source.

Wednesday and Thursday we began to talk about the upcoming funeral, to prepare her for what was going to happen and the changes that she would see in our house with so many different family members arriving. We talked about the funeral and told her it would be a celebration at church for Johnny. We read through one of the books the people at Child Life had given us – about death and why people die.

Friday, after the funeral and later that night, was a particularly difficult time for Juliana, in the evening when it was bed time. She was upset and crying, doing her unique sounding cry for Johnny. I held her close and tried to talk to her about things. When she cried like this, we would ask what was wrong, and she was again saying, “I don’t know”, which is very unusual for her. She is usually very good at telling us exactly what is wrong. I knew what it was about. She was grieving the loss of her little brother. She knows she misses him, but she doesn’t always fully understand the emotion she feels because she misses him. Linking the emotional piece she is feeling with the word that describes the emotion is the challenge for her, so we try and help her do that. As she was crying, we would talk about what it might be, then eventually get around to talking about Johnny, how we miss him, how we wish he was still with us, how he was so much fun. Just like us, she just needed to get those emotions expressed, as part of her own healing process.

Later that evening, that Friday night after the funeral, I remember it was the first time she was crying hard and also saying, “I miss Johnny” over and over again. We kept talking about it until she was calm again, and then she fell asleep.

Some of the best advice I received from the Child Life people was that she would take what she needed to take from the various aspects of his death, the few days afterward, the funeral, and everything else surrounding how our lives had changed and the unique things we were experiencing. It was really true and I could see it evolving that way. We have learned a great deal about how the mind of a small child works through an experience like this.

That Friday night, as we talked through things, she told me, “Daddy, I want to hold a flower tomorrow to remember Johnny.” A little later, she said, “Can we light a candle tomorrow for Johnny? To remember that he is in heaven?” At the funeral, she had placed a flower on his casket, and had joined Lea and I when we lit a candle to symbolize that Johnny was now in heaven. At the burial, she had dropped a rose into the grave, after the casket was lowered. Those were the things that she took with her from the ceremony. Things she connected with, that she needed to own for herself. Connections with Johnny, with us, and with the ceremony, that were important for her.

On the weekend, for the first time, we started to talk about how all of us were doing. She would sometimes reply that we seemed “sad” so we would explain that we were sad and missed Johnny but we were also happy that she was with us. Sometimes when we would talk about how we were doing, she would say mommy and daddy are “mad”. It’s possible that she may have been meaning “sad” and just got the word wrong, but more likely she may have really thought we were mad because Johnny was gone and Juliana was here, like we wished it was the other way around. Before that, I don’t remember her ever saying that anybody was mad. We stepped up our efforts to reassure her that we were really glad and happy that she was still with us.

By Monday, a week after Johnny had died and three days after the funeral, we had made good progress and she was back to understanding that even though we were sad that Johnny wasn’t with us, we were really happy that she was with us. The next week would see a lot of ups and downs, many questions from her, a lot of time holding her when she was crying for Johnny and when she needed it, or for that matter when we needed it, and a general progress of her working through her sorrow. It was not uncommon for her to wake up crying, upset, early in the morning or the middle of the night, and Lea or I would just hold her for a long time.

A week later, two weeks after we lost Johnny, the periods of a lot of crying were ending. She was coming to terms with what had happened. Not a day goes by that she doesn’t mention something about Johnny. She carefully watches us and our emotions. A central theme of our talks about Johnny is how we are sad that Johnny isn’t with us, but we are happy Juliana is here and that we are together. We have checked in with her often, asking her questions, to make sure she understands that we are glad she is with us, we don’t wish that she had gone to heaven instead of Johnny, that our hearts are all good and don’t need fixing, and several other questions with a similar theme.

On a regular basis, almost every day, there are instances where she talks about Johnny. Sometimes it’s hard, but we know it’s necessary and we are thankful that she is so open to talk to us and share her emotions and thoughts with us as she works through this process. Below are some examples of the typical interactions we have.

One day Juliana saw a program from Johnny’s funeral on our dresser in our bedroom. The program had a picture of Johnny on the front cover. Juliana asked Lea if she could have the program. Lea gave it to her, and she said, “See, this is a picture of Johnny, it makes us happy to see a picture of him, like he is still here with us.” We had talked long ago about pictures, and how they help us if we miss people. The discussion was back when Johnny went to the hospital. We had talked about how he would be at the hospital but we would keep pictures of him close to us at the house while he was gone.

I had just come home from work when Juliana was holding the program from the funeral. I walked in to see Lea holding Juliana and Juliana holding the program with Johnny’s photo. She held it out for me, like she wanted me to take it. So I asked her if that is what she was doing, that she wanted me to have the program, and she said, “Yeah” in a soft and serious voice. As soon as I took it, she said, “It will make you happy, to remember Johnny….” Instances like this happen regularly in our home now. We try and comfort each other, Juliana comforts us in her own way, and we work to help her navigate through her emotions.

Another instance occurred before she went to pre-school one morning. She was prancing around all happy and in good spirits in the morning. She went into our bedroom, I followed her in there, and she found Johnny’s little mirror with cute little bugs around the edges. We got this for him and he just loved it. We would stand it on end and he would lay on his side and look at himself, reaching for the little toy bugs. It was really fun to watch him and Juliana always liked watching him play with the mirror, too. She would say, “He can see himself!” when he was having a great time with it.

That morning she held the mirror and said, “We should bring this upstairs and put it away.” The child specialists have told me that when she says things like that about Johnny’s things, it’s probably because she thinks they might make us sad. So I said, “I don’t know, I like having some of Johnny’s things out, do you remember how much fun we used to have with him when he played with that mirror?” She said she did, and then we talked a little about how nice it is that we have so many good memories of Johnny. Then she said, “We can be happy about things, and be sad about other things at the same time.” We have been talking about this a lot lately, that if we are sad about Johnny it doesn’t mean we are sad about everything.

Last weekend all of us went to church together. For the first time since the funeral, all three of us were in the sanctuary together. It brought back some memories and emotions for all of us, including Juliana. Later that day, when Juliana woke up from her nap, she was talking about Johnny and was a little upset about some things, crying a little and fussy. We talked to her for awhile about it, and then she seemed fine. That evening, when Lea was with her at bed time, she asked, “why didn’t they show the Johnny pictures during church?” Lea explained that the pictures they showed at the “special ceremony for Johnny” were for that ceremony only, and that they wouldn’t show them at church every time we were there. Lea told her she could see them again sometime on our computer, and Juliana said she would like that. She seems to connect going to church with Johnny. This morning, on the way home from church, she was crying and upset, and seemed subdued and quiet when I carried her in the house. It didn’t last long, but I think she gets sad being at church and remembering the funeral and all the things that she remembers about Johnny from that day.

A couple of days after that first time back in church, as I was holding her at bedtime and we were reading books, she started talking about Johnny. She wasn’t upset, we were just sharing some happy memories. It was time to say bedtime prayers, so I asked her if she wanted to say anything. She said, “Dear God, thank you for this day, thank you for mommy and daddy, and thank you for having Johnny in heaven and for fixing his heart. Amen.” When she says things like this it really melts my heart. She thinks about him all the time, and I know she misses him.

The next night, Lea was with Juliana at bedtime and they were sitting in the glider rocker in the dark, right before Lea placed her in her bed. Lea had finished her bedtime routine. They had a great time reading a few books, then told stories and sang some songs together. Everything was going well, there was laughter and fun earlier, now it was getting quiet. Juliana was in good spirits and calming down and getting quiet before bed. All of a sudden, in the dark stillness of the room, Juliana called out “Johnny!” in a loud voice filled with anguish. Lea asked what was wrong, and with distress in her voice, said, “I want to hold Johnny!” Lea told her that she did too, and that she missed him, but he was in heaven so they couldn’t hold him. Lea asked her if she remembered holding Johnny, and with a happier voice said, “I could hardly stand it…he was heavy!” Lea asked her if she remembered how wiggly he was and she started to cry her special cry for him. Lea encouraged her to cry as long as she wanted to and reassured her that she would hold her for awhile. Juliana cried for awhile and then told Lea she was ready to go in her bed. Juliana didn’t hold Johnny that often but those were precious times for us when she did, and we are thankful to have some good pictures of her holding Johnny. We really miss seeing them together. It’s interesting that she remembered how heavy he was for her to hold.

The left sliding door on the van might always be called “Johnny’s door”. When we open it up, and she’s in the van, she will ask, “why are you opening Johnny’s door” or just tell us, “that’s Johnny’s door.” To her, it’s very logical. Johnny isn’t here but it’s still his door, and probably always will be. It’s what we call the left sliding door on the van.

A few days ago Lea brought her to a park and Juliana saw a mom with a baby in a stroller. The mom was trying to get her baby to go to sleep. Juliana pointed it out to Lea and then turned with a sad expression on her face and said, “Look at that blanket.” Lea could tell right away that it was hard for her to see that mom with a baby, and that she was thinking about Johnny. Juliana started sadly walking away with a little shrug of her shoulders like she does sometimes. Lea and Juliana soon left the park and on the way back to the van, Juliana started to cry her special cry for Johnny. Lea asked her why she was sad, and in that sad, distressed voice, she just said, “Johnny” and kept crying. They stopped at a bench, and Lea offered to hold her and comfort her, but she didn’t want to be held. She kept crying a little more then stopped and they walked to the van and went home. Just like with us, out of nowhere, when she least expects it, she feels sorrow and loss, triggered by some event or circumstance that brings back a lot of emotion about Johnny. It happens to us everyday and it happens to Juliana, too.

And so things go with Juliana. I could write countless more examples of how she talks about him, how she cries for him, and how she tells us that she misses him. Overall, even though it is difficult, we are more confident every day that Juliana will be okay through this. She talks about him often, and that’s a positive sign she is on the right track. We are fully committed to do what we need to do to help her through this stage of her life, and to get help when we need it. The Child Life staff at the hospital will always be a great resource for us to ask questions and provide reassurance when we need it. Some days she may be doing better than anybody else in the house, which is okay and probably the way we would want it. She has things neatly organized in her mind now of what happened, and what it all means. And although she misses Johnny, and I know she does, sometimes very much, she is working through it. The Child Life specialists that work with little kids going through these situations with lost siblings told us long ago how important it would be to help her organize her thoughts about this, and it appears she has done this. In her world, it’s all very simple:

Johnny had something broken in his heart.
He went in the hospital for surgery to fix it.
He was going to be in the hospital for a little while.
The doctors tried to fix his heart, but they couldn’t do it, so Johnny died.
The doctors tried really hard, but couldn’t fix it.
Mommy and Daddy couldn’t fix it either, even though Daddy can always fix things around the house when I break them.
Sometimes things that are broken just can’t be fixed, no matter how hard everyone tries.
Mommy and Daddy are sad about Johnny and they miss him.
I miss him, too, and I’m also sad because he’s gone.
We can hold a flower to think about him.
We can light a candle to remember that he is now with God in heaven.
Heaven is a really happy place and people don’t come back from there.
That’s okay because it’s a really happy place and Johnny is really happy there.
We have pictures of him around the house to remember him.
We like to have some of his things around to remember happy times with him.
We are slowly putting some of these things away that we don’t need anymore.
Some things we might leave out a long time.
My heart isn’t broken, it’s healthy, and doesn’t need to be fixed.
Mommy and Daddy also have a good heart.
Mommy and Daddy miss Johnny, and that makes them sad, but they are really happy they have me. They are happy that I am still here with them.
And I am really happy that Mommy and Daddy are here with me.
We can be really happy we have each other, even though we are sad Johnny is gone.

For Juliana, that’s the complete picture. What she really doesn’t grasp at all is the sense of loss of the future we thought we had with Johnny, and that’s probably a good thing because it’s a central part of our grief. She’s got everything organized, and that alone is reassuring to her, and to us. She doesn’t need to know or understand much more, at least not now. She will probably ask more in the future, when she’s older, and we will cross that bridge together when we come to it. I expect at some point when she becomes more aware of families with siblings, and how significant that is, we will pass through another difficult time where she will want a brother or sister, and realize she had one, and now he’s gone. We are all forever changed by Johnny and these events, including Juliana. There just isn’t a neat and tidy conclusion that wraps things up so we don’t need to revisit the feelings, the loss, and the reality of what has happened.

So as a family, we move forward, one day at a time, talking with Juliana about things daily, sharing our thoughts, our memories, and sadness. And we talk about our happiness that we have each other, that God is with us, and that we will be okay, which I think we will. Thank you for your continued thoughts and prayers for us. These days continue to be very difficult for us but we stand amazed at the community of family and friends that continue to offer so much support to us. You help to lift our spirits, you really do.