Juliana says Goodbye - Part I

Johnny died peacefully at 3:24 pm on a Sunday afternoon, three weeks ago, with Lea and I holding on to each other and holding Johnny in our arms. Together we held him the last two and a half hours of his life. About two hours after he died, we had somehow collected ourselves enough to drive home and confront what seemed like the impossible task of telling our little Juliana what had happened. Certainly a difficult task and we both felt at the time that we had absolutely no strength remaining, but we knew we had to do it for Juliana. And it wasn’t enough just to tell her what happened, we knew that we had to bring her back to the hospital for a final goodbye. We didn’t have to ask for advice or counsel on how important this was. I knew we couldn’t just tell Juliana that he was gone without her seeing him one last time and saying goodbye. Doing so would forever be a conflicting issue for her, so that was never an option. She had to have a conclusion. A final goodbye to his physical presence, before she wouldn’t see him again.

Just a few days earlier, I had written about how difficult it was to bring her into the ICU, to see Johnny, when he was in such serious condition. Juliana had handled it really well, and it was a great benefit to her to have done that. We were making progress on explaining everything about Johnny's surgery in terms that a near three year old could understand. Looking back now I am at least thankful for the groundwork that was in place so we were able to understand what was important for Juliana to say goodbye to Johnny.

When Lea and I left Johnny's room and walked out, the heaviness of the situation weighed down on us. Words can’t describe the feelings, the thoughts, the emotion of going back into the world, after what we had experienced that afternoon. Our friend Tom was in the waiting area. We had no idea he would still be there. He asked if there was anything he could do. We asked if he could follow us home in one of our vehicles, since we had driven separately to the hospital what seemed like days ago but was early that same morning. Lea and I simply did not want to be apart at that moment.

Lea and I got in the van and started the drive home. I called my mom and dad to let them know we were on the way, and told them that when we arrived we would need some time alone with Juliana. It was a quiet ride home, as I held Lea’s hand. We talked a little about what we would say to Juliana, about how difficult it would be. We cried.

We arrived home and walked in and found Juliana happy and doing great, and glad to see us. She came running over and gave us a big hug as my parents, in tears, quietly turned and left us alone after giving us a hug. We greeted Juliana and spent a little time just talking about her day, how her friend (a teacher) Sandi from pre-school had come over to play with her, the things she had done, what was fun, what she had to eat for dinner. Then the time had come. I remember taking a deep breath. I told Juliana that “we needed to have a talk about some things.” She has learned that this means we need to talk about some serious or important things. Usually it’s something like how she needs to obey mommy better, or why it’s important to have good sleep, or recently how she was ready to move from the toddler room to the pre-school room.

We went over to the big green sofa in the living room and we all sat down, Lea and I with Juliana between us. She was standing on the cushions, like she always does, leaning back on the back rest, slowly moving back and forth between us, waiting for us to say something. We started to talk about how Johnny was in the hospital, how she had visited him, and how he had surgery. We talked about his heart, and why he had needed to go to the hospital. Then I told her that we were going to go to the hospital tonight, because “We need to say goodbye to Johnny one last time, because he isn’t going to come home with us like we wanted him to.” As expected and as I knew she would, she asked “Why isn’t Johnny coming home?”

We talked more about his surgery, about how the doctors were trying to fix his heart, and then I told her that they had tried really hard, but today, they couldn’t fix his heart, and he had died. We had talked a lot about the word we would use to describe what had happened, and thought it would be best to use the word that accurately describes it, Johnny had died, however hard it was to teach her that word that night. She has learned the meaning of the word “died” along with many other words that I so wish she didn’t have to know at her age.

I’ll never forget what she asked after I told her the doctors couldn’t fix his heart. “What are we going to do to fix it?” she asked. She asked without hesitation, and completely expecting that we would be able to tell her what we were going to do. I had to explain that there wasn’t anything we could do, the doctors had done everything they could, and mommy and daddy had done everything they could. There wasn’t anything anybody could do, so Johnny had died. Over the next several days, this was a common question, again and again. At one point, she asked me, “Daddy, you can fix things around the house when I break them, why couldn’t you fix Johnny’s heart?” Such is the simple mind of a young child. How I wish she didn't have to learn that sometimes some of the most important things that are broken can't be fixed.

We then talked about where Johnny went. We told her that he had died and that now he was in heaven. She asked, “After Johnny goes to heaven, when is he going to come back to our house?” We told him that he’s going to heaven and that’s a really happy place where you don’t come back because everyone likes it there. She asked a few more questions about why he wouldn’t come back, we tried our best to answer her. This was another central question for her in the coming days.

“Are you ready to go say goodbye to Johnny?” I asked. She quietly nodded, looking like she had become fully aware of the sorrow in the air and with all of us. Lea and I got up as she slid off the edge of the sofa and down to the floor and we walked to the door to get ready.

On the way to the hospital, we talked about the typical hospital routine and what we would do. She had developed an anticipation to go to the hospital, with all the fun children things there so we talked about some of the usual things. We talked about counting the monkeys on the wall, and how she wanted to ride in one of the red wagons. We told her we would do all of those things when we got there.

When we arrived, we had decided that Lea would stay out in the lobby with Juliana while I went in and briefly checked on Johnny and the nurse to make sure all was in order for Juliana’s last visit. I walked back to Johnny's room in the ICU. Our nurse, Samantha (Sam) was still there. She had been there about 12 hours at that point, since 7 am that morning. She had been crying with us much of the day, obviously deeply moved by what she was witnessing. How these nurses in the pediatric ICU do their work is really beyond me, they are a special group of care givers, and during a day like this when we lost our son, they become so much more then nurses to the families that they serve. They are truly special people.

I had also asked a woman from the Child Life group named Mindy to meet us there to observe the interaction with Juliana and give me some feedback after it was over. These Child Life specialists are unbelievable resources for parents going through these situations and we were glad to have the help. A woman named Judy had provided invaluable help to us prior to this day. Judy wasn't available but Mindy was working in the ER that evening. I had talked briefly with Mindy before we left for home to get Juliana. She showed me a couple of books she had brought for Juliana, kids books to help parents talk to their kids about their thoughts and emotions, about grief and loss, and the experience of losing a brother or sister. One of the books had the title, “I miss you”. She also gave me some other valuable resources to take home. Everything she provided proved to be highly valuable in the coming days and weeks.

Earlier that day, after Johnny had died, we held him for awhile and just cried. The tears flowed freely, we talked to him, we talked to each other. When we were ready, the nurses carefully disconnected him from the various monitors and things. We dressed him in a nice white and blue plaid outfit, with matching white shirt with blue trim underneath, and with a picture of Pooh bear on the front bib. We then wrapped him in a nice baby blue blanket. He looked so peaceful laying there on the bed. Much like he was sleeping peacefully.

Back in December, when things looked so bleak and the doctors didn’t give us any hope that he would go full term, thinking he would die in the womb, a woman at the clinic had asked us to consider if we would want time with our baby after he was delivered. She had told us that many parents dress their child and spend a few hours with the baby to hold him and to care for him just once. I remember thinking how tragic this would be, how difficult, and wondering if we would really want to do that. But now we had a complete understanding of the importance of having this as an option, and taking care of Johnny that last time, dressing him in nice clothes one last time, wrapping him up again, holding him just one more time, it all seemed so natural and important we didn’t think much about doing anything differently.

After talking with Mindy, and before I went to get Juliana, I went over to the bed to see Johnny again. He looked peaceful and calm. I got out some of the favorite toys and books that Juliana had packed in his hospital bag, not even one week before this day. She loved helping me pack up his hospital bag and was all excited about the things to include in it, knowing what he would like. I spread out a few things around Johnny, so that Juliana would see familiar items from the bag. His toy ring, a couple of books, his new little lion, a few other things. I adjusted his blanket around his body and his head, making sure he would look good to Juliana. I whispered to him that I needed him to do one more thing for us; I needed him to let Juliana come in and say goodbye. I gave him a kiss on the forehead. His skin was cold, but still soft. And then I left to get Juliana, talking with myself about how we needed to hold it together so this would work for Juliana.

Juliana was with Lea in the lobby, and I grabbed one of the red wagons that I had told her we would use to bring her into see Johnny. I looked at Lea to make sure she was ready, and I knew she was. We loaded up Juliana and we headed back into the ICU.

As we got close to Johnny’s room, I stopped and lifted Juliana into my arms. We quietly walked into the room and right away she saw Johnny, pointed, and said, “There’s Johnny!” We walked over to his bed, and I asked her if she wanted to sit down on the bed with him and she said yes, so I carefully set her down near where his feet were. She gave him a little pat on the blanket and softly said, “Hi, Johnny”. We talked about his little nose and ears, she always liked his little features. She wanted to see his hands and feet so I pulled back the blue blanket a little bit so she could see them and touch them.

We asked her if she liked the outfit he had on, and she said she liked the Pooh Bear on the front pocket of his outfit and she reached out to touch the Pooh Bear. She thought his mouth looked a little funny so we talked about that but I could tell that it didn’t really bother her. She had noticed that the color of his lips looked a little different.

Through the entire time, as she just sat there talking with us, and talking with Johnny, she was loving and tender with him, as she always was. It’s been three weeks and it’s still one of the hardest things about losing Johnny….not seeing our kids together. I hope one day I can somehow convey to Juliana how wonderful she was with him without making it a painful memory. Hopefully this record of everything will be significant for her to have.

She noticed the books that Mindy had brought, along with the other things that I had placed near Johnny. The books Mindy had brought were new so she was interested in them. I asked her if she wanted to read a book to Johnny, and she picked up the “I miss you” book. She carefully opened each page, and held it up “teacher style” so Johnny could see. She didn’t say any words, just held it up one page at a time, holding it briefly so Johnny could look at it, then brought it back down to turn the page.

After she finished with the book, we talked a little more about Johnny and then I asked her if she was ready to say goodbye. I picked her up and held her and leaned her in close to Johnny. She gave him a pat on the blanket again and said, “Goodbye, Johnny.” I asked her if she wanted to tell him that she loved him, and she leaned in again and said, “Goodbye, Johnny, I love you.” And with that, she had said her final goodbye.

During Juliana’s last visit, she had brought a picture from pre-school to hang on his wall. I brought her over to the picture and asked if she wanted to bring it home or leave it with him. It was a finger painting with bright green streaks made by the small fingers of a pre-schooler. Her name was written in red marker along the bottom edge of the paper, attached to the wall in portrait with hospital surgical tape. She said she wanted to bring it home, so we took it down and folded it neatly to take with us. We lingered a little while longer, and then we walked out of Johnny’s room. We were probably there about 15-20 minutes.

I placed her in the red wagon, and we walked down the hall and out of the ICU. When we were out, I told Lea that I would go back in and get some things. We had talked about how each of us would probably have one last goodbye ourselves, alone, before we brought Juliana home.

I headed back into the ICU, all alone this time. I could feel the emotion trying to surface, from holding it together for Juliana, just like the last time, when I had carried her into see Johnny a few days after his surgery. As I turned the corner into Johnny’s room, I broke down. Sam and Mindy were still there, but it really didn’t matter, I couldn't hold it in. I sat down on a stool. One of them brought me some Kleenex, another one of them had an arm around me. I sat there and wept, again, wondering how many tears are possible to shed in a single day. Eventually, it subsided, and I was able to talk to Sam and Mindy. I thanked Mindy for her help. She reassured me that things had gone really well with Juliana and she said some kind words about how great we were doing with her. I thanked Sam for all she had done for us that day. And then I had my own good bye with Johnny. I put my hand on him and said a few words, I told him how much I would miss him, and that we loved him, and just like Juliana, said one last good bye.

I headed out to the lobby to meet with Lea. I brought Juliana out to the van while Lea went in to say her last good bye to Johnny. Several minutes later I picked Lea up in the van. She climbed in, I grabbed her hand. Juliana was in the back seat. I shared on an earlier post how at that point, as we drove away, Juliana asked us to play the "Hallelujah" song. It was an unforgetable drive home from the hospital.

By the time we arrived home, it was getting late, so we helped Juliana get ready for bed, and decided it would be best for Lea to try and put her to bed for the night. Juliana was in a fairly good mood, a little tired, obviously not aware or processing much yet, but we knew it would come in it's own time, and we would be ready. While I was getting her pajamas on, she asked if she could call Johnny on the telephone. The night before, when I was home with her to put her to bed, she asked the same thing, and we called Lea at the hospital and asked her to hold a phone up to Johnny's ear. Through the phone the previous night, Juliana said, "Good night, Johnny, I love you." And that was all she needed to close out the day, a last connection with Johnny before going to sleep.

Thinking back now, I can't remember exactly what I said to her that night, but we didn't call Johnny on the phone. I think I said something about how he was in heaven and we couldn't call him on the phone and she didn't protest that response. We went on to talking about other things. Thinking back to that night, I think it would have been okay for her to make a pretend call to him, but at the same time, we have tried to be really cautious about talking about things in what would seem to be innocent terms, just for the sake of avoiding the more difficult reality of the situation. So far that seems to be serving us well, staying true to what is real even if more difficult to explain and process with Juliana.

That night, as Lea was with Juliana at bed time, she asked Lea, “Are you sad, Mommy?” Lea told her, “Yes, I’m sad because I miss Johnny.” Juliana replied back, “But I’m here, mommy….I’m here.” And so for the first time we began to understand how important it would be to work through the issue of making sure she knew that we were happy she was with us, even if we were sad that Johnny was gone. This would be another central issue for the coming days.

For us, at the time, the visit to the hospital was Juliana’s final goodbye to her little brother. But for Juliana, we quickly realized that her final goodbye has really extended out well beyond that visit. I’ll post more soon about the past few weeks and Juliana’s continuing process of saying goodbye to Johnny. My purpose in recording all this in detail is that someday she will find great value and comfort knowing how connected she was with Johnny, how in her own way she processed and grieved his loss, and how touched and moved we were to witness her love for him, even in the end, and after he was gone.