Letting go...and remembering

A few weeks ago I wrote about Johnny's funeral ceremony and now I will share a few thoughts and memories about the burial that followed. The day continues to be very significant for us and I believe always will be. Our plan for the burial was a very simple ceremony, with meaning and significance, as we said one last goodbye to Johnny.

We arrived at the cemetery late, maybe around 1:15 or 1:30 pm. I think we may have been one of the last vehicles there except for my parents who were following us. There was no formal processional so many had arrived before us and were waiting patiently. Back at the church, before we departed, we had a little delay with Juliana.....she needed to go to the bathroom, or at least she thought she did. We were in the toddler Sunday school room, trying to use the special bathroom for the toddlers. Here we were with a squirrely little toddler girl, laughing and giggling, as we tried to help her take care of things. The episode was in stark contrast to the ceremony with Johnny that had just concluded maybe 90 minutes earlier. We didn't mind, it was okay, almost fitting for the occasion. Through everything, Juliana has never let us forget that we are still parents and that we are thankful to continue to experience the joy of children. She gave us a little break of laughter on a day filled with tears and sadness. We are so thankful we have her with us.

After we finally had Juliana loaded in the care, we drove to the cemetery. We turned in to the main entrance off Larpenteur Avenue. Vehicles of family and friends were lined up near the chapel, with the black sedan of the funeral director in the lead. He moved up his sedan and we fell in place with the family van directly behind him. Others followed as we slowly made our way up the cemetery road to the grave site.

Shortly after we were moving down the cemetery road, Juliana, in an excited voice said, “All the pictures at the celebration had Johnny in them!” She was referring to the photographs we had shown as a slide show at the end of the ceremony while the “Hallelujah” song had played. Lea and I looked at each other and smiled a little…..once again the awareness of our little Juliana to everything that was going on amazed me. I recall asking her something about if she liked the photos, and she said she did.

We arrived at the grave site and pulled off to the side of the road. I remember the ash tree nearby was providing a near perfect area of shade for the grave site. I remember thinking that it was a beautiful day. The air was clear, bright blue sky, nice sunshine, warm, but with a nice light breeze blowing. It could not have been a much more beautiful day.

We were so glad to have found the site we chose for Johnny. It was nice, up on a hill, near the north side of the cemetery. There are three crab apple trees close by that will look beautiful in the spring, just like the crab apple tree we have in our front yard. A row of lilac bushes extends along the property line of the cemetery, not far from where Johnny is. The ash tree is nice and will provide some welcome shade in the summer months to keep the grass a little greener. There is a water spigot very close that we can use to water the arrangement of flowers we have there.

Everyone got out of their cars and moved toward the grave site. They had arranged a large square of green outdoor carpeting up and over the mound of dirt and across the grave. There was a little raised up area under the green carpeting, like a platform, for the casket. After everyone had gathered around, I walked with Jim, our funeral director, over to his sedan to get Johnny. He first took out the roses that we had used at the ceremony as a symbol of our family, and laid them down near the platform area where the casket would go. Then he carefully lifted the casket out and placed it in my arms. The two baby blankets, one with little sailboats and whales, the other one the baby blue blanket my mom had knitted, were laying across the casket.
It was a short walk with Johnny from the sedan over to the grave. I carefully placed him down on the raised platform, made sure he was in the right direction, and adjusted his blankets. Everyone gathered around a little closer. Lea was on my right side, holding Juliana. Having him back in front of us brought back the waves of emotion that had subsided a little since the ceremony earlier that morning.

Sid, one of our pastors, opened the service by saying a few words about the significance of the day and why we were there. At some point Juliana got a little impatient and wanted to get down out of Lea’s arms, and upon doing so walked over to one of her aunts to be held. Lea and I remained side by side, holding hands.

When Sid was finished, Alice, our pastor for Children’s Ministries, asked everyone to gather around and hold hands in a circle. She then led us in a prayer. I was holding hands with a friend named Heidi on my left. Lea was on my right. Not long after we had started, I felt a little hand on mine and looked down to see Juliana. She had gotten down out of her aunts arms and wanted to be between mommy and daddy. She smiled up at me as we each took her hand and had her between us.

Alice finished the prayer. It was time to lower Johnny into the grave.

Earlier in the week, I had talked to the cemetery grounds keepers and our funeral director about the burial service and how I wanted to be the one to place Johnny in the grave. My thinking was the same as the funeral service and carrying him in and out of the ceremony. How could I let anyone else do it? It was the last time I would hold Johnny’s physical presence. The last time to feel his weight in my arms and hands. The last chance to physically care for him in a small way. I had asked how deep the grave would be. Four feet they told me, cut in the outline of a rectangle, large enough to accommodate the dimensions of the casket. Four feet seemed like a long way down to place something at the bottom. I asked about using anything to lower him in, they told me they didn’t use anything, that I would be okay. I just couldn't imagine letting the grounds keepers do it while we stood by.

We paused for a brief moment, after Alice was done with the prayer. When it was time, I looked at Lea and asked if she was ready. She gave me a small nod. I looked at Jim to let him know we were ready.

I remember taking off the jacket of my black suit and handing it to Lea. Then I tucked the lower end of the baby blue silk tie I was wearing into a gap between the buttons of my pressed white shirt. I hadn’t thought about doing this but it just came naturally. Looking back now it seems so fitting. I was about to do a little labor to care for our son so I was getting ready, just like I always did. Coming home from work, I would often change out of my nicer clothes before holding Johnny. You quickly learn, as I did with Juliana and again with Johnny, that babies don’t care what you are wearing and often create all sorts of accidents so you might as well be ready. When Johnny was in the hospital, I would wear older shirts when we were there knowing that we would be holding him and that it was important to be comfortable and have something on that could be sacrificed due to a little mishap. If I had a suit or jacket on, and came home from work to see Johnny, I wouldn’t have picked him up with my jacket on. I would have taken it off, just like at this moment, to hold him close.

After removing my jacket and fixing my tie, I leaned over and picked up the little blankets on Johnny’s casket, and handed them to Lea. I picked up Johnny, and held him in my arms, as Jim and the cemetery workers pulled back the green carpet to expose the grave. Jim carefully placed a section of the green carpet across the front side of the grave so I would have something to kneel on. It was time. I carefully lowered Johnny to the ground in front of the grave, and got down on my knees. I reached out to take hold of each end of the casket, and held each end tightly in my hands. I moved Johnny forward over the grave and began to lower him in. I remember thinking that the grave looked deep. I remember seeing the bright, clean wood of a tree root cut diagonally across the far side of the wall of the grave. As I carefully lowered Johnny down, I could smell the damp, musty odor of the ground, and I had a sense of cooler temperatures as I kept lowering him in, my head and shoulders now leaned into the grave. I remember the feeling of gently touching the bottom, adjusting the casket to be perfectly square with the grave, and then slowly letting go, for the last time, and lifting my arms out of the grave.

I remember just kneeling there for a brief moment, pausing to collect myself and looking at the casket in the grave.

When I stood up, Lea and I put an arm around each other and leaned into each other. We cried and held each other briefly. Then we took the roses that we had brought with us from the funeral and prepared to drop them in the grave on top of the casket. At the funeral earlier that day, the four roses had represented our family. Two rose buds to symbolize our children, two roses in bloom to symbolize Lea and I. Juliana and I now each had one, Lea had two. A friend asked me later what the significance was for placing the roses in the grave at the burial. Here is how I replied:

When Johnny died, our hopes and dreams for him died with him. We know he is in a better place, but our loss is what we have lost by no longer having him with us here on earth. So the flowers represent our shattered dreams, our lost hopes, as individuals and as a family. Jules and her role as a big sister, Lea and I as his parents and all we will not experience that we wanted to with our son. All lost, laid to rest in the grave with Johnny. Beautiful dreams, represented by beautiful flowers.

It’s been a month since the funeral, and the grief over the loss of all that we will not experience with Johnny remains a central part of the pain. Children and babies are so full of life, possibilities, hope, and potential. They aren’t supposed to just leave you one day while they are still so young. We know all the right ways to think about what has happened, but it’s still very difficult. You can know in your mind how to process things and maintain some level of hope, even in such difficult circumstances, but your heart and the feelings you have are another matter.

After we dropped the roses into the grave, we paused again briefly to hold each other and contemplate the moment. The burial ceremony was almost complete. Then I went around to the other side of the small mound of dirt and pulled back a section of the green outdoor carpeting. I found the shovel the grounds keeper had left there and carefully shoveled a scoop of dirt from the mound and then carried it over to the grave and let it fall into the opening, onto the casket. I repeated the same motion again, making it two shovel-full scoops of dirt, one for Lea, one for me, dropped into the grave, as we laid Johnny to rest and said a final good-bye.

I set the shovel down and went back to Lea’s side. We again embraced side by side, arm in arm, and stood there for awhile. Everyone there stood with us, gathered around in clusters in various directions from the grave. I offered a final prayer for Johnny and the service. I can’t remember what I said, maybe something about thanking God for the brief time we had with Johnny, and asking Him to help us through this difficult time. After the prayer, we approached those that had come to the burial to join us. I shook some hands and embraced those that were there, thanking everyone for coming. The service was concluding.

People lingered for awhile, visiting quietly, before slowly starting to depart. There were some last goodbyes to us as people started to leave. After we gave Juliana some good hugs goodbye, my family left with her to bring her home for a nap. Lea spent some time at the grave, kneeling and contemplating our loss. Lea and I stayed until nearly everyone was gone, except for Jim, our funeral director, the groundskeepers, and our friend Tom. Before we left, I shook hands with Jim. He told me the funeral was one of the most beautiful he had ever been a part of. I thanked him for his help and told him I would call him later in the week to go over some last details. Lea and I walked over to the grave one more time before departing. It was hard to leave and to let go.

Finally, we turned and walked over to get into the van, not really knowing where we were going to go. I can’t describe the feelings we had at that moment after experiencing what we had done that day. We knew we didn’t want to be apart, but beyond that, we didn’t know much else. After we drove off, we stopped at a gas station and got some water to drink, then we drove over to a park and found a shady bench to sit down on.

Over the next couple of hours, we talked a lot about how we both felt so lost, without direction, and the void we were experiencing in our lives. Johhathan had required so much of us, and now all of a sudden he was gone. Our life with him was over. The week leading up to the funeral had been intense and filled with countless tasks and details. Now all was concluded, and for the first time, we were experiencing a different kind of loss and emptiness. We sat on the bench for a long time, watching people walking by. We just sat there talking, staying close. Later we drove around, to no where in particular. For a few hours, we did nothing except stay together. For the first time in many months, we were wasting time, just drifting about, doing nothing. And at the same time, it seemed like we were doing what we needed to be doing.

At some point I called home to make sure Juliana was okay. She was sleeping fine, having a nice, quiet nap. After some time, we finally went home. I remember pulling in the drive way, seeing the house, the life we were returning to, and just wondering if we could pick up the pieces and keep moving forward as a family. With God’s help and the help of many, many people, we have been able to do just that. It's not always easy, but we are making progress.

We have been back to the cemetery and grave site many times since that day, to reflect on Johnny, his life, and the impact the last several months has had on us. Johnny’s funeral ceremony and the burial turned out to be many important things for us. It was a time to honor Johnny’s life and all he accomplished, to grieve, to begin to heal, to come together as an extended family and as a community of friends, and for Lea and I a chance to parent him and care for him one last time. For Juliana, she took what she needed from the day to capture some important memories of saying goodbye and remembering her little brother. It was a time to give thanks to God for the blessing of Johnny’s four months with us, and to consider all he gave to us and to his family in that brief time. Today marks the one month anniversary from that day – August 29th.

Meaningful Dates, Significant Days

Today marks one month from the date when we lost Johnny - August 24th. I wonder sometimes how long the dates and days will hold so much significance and bring back so many memories. Last Friday was the one month date from when we brought him to the hospital and he had his surgery. The next day, Saturday, September 20th, he would have been five months old.

I was at work today and during the afternoon I stepped away and went outside for a period of time. It was about 3:10 pm when I left. I needed a break, my mind was on the significance of the date all day long, but this afternoon it was especially weighing on me. It was good to step outside, into the sunshine, and feel the cool breeze blowing. I just sat down for a little while, alone, and thought about Johnny. Then I called Lea. It was good to be together on the phone when the time passed - 3:24 pm - the moment we lost him. I wanted to be with her, and wished I was home, but at least we were together, talking. Not an easy day for either one of us.

If it’s not the dates of the month, it’s the days of the week. Every Monday I think about bringing Johnny to his pre-op appointment and spending time with him and Lea all afternoon at the hospital. Every Tuesday I think about bringing him back to the hospital on Tuesday, August 19th, and waiting for him to come out of surgery. Fridays always remind me of the funeral. Sunday afternoons are filled with memories of the Sunday afternoon we held Johnny for the last time as he slipped away from us.

My sense is it will be like this for awhile. And we have other dates coming up that I know will hold a lot of significance. Although sometimes difficult, it feels okay, like a natural part of the process. In some ways, I am thankful for the reminders, as it causes us to pause and consider the reality of what has happened, to think of Johnny, and to reconsider our priorities and what is important to us and to our family. Johnny keeps giving us gifts.

I shared at the funeral that the date (August 29) was very close to the date when Lea told me she was pregnant with Johnny, one year earlier. It was late August, I don’t remember the exact day but it was close, and might well have been the very same day. We have a complete year of memories with Johnny. At least for now, his life has become our new calendar. The significant and meaningful days and dates continue to roll by, as we continue to make slow progress on this journey of living without him, and trying to remember everything about him.

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.

Holding Johnny

I had the day off today, so this morning I went on a long run. I drove over to Minneapolis and ran a route that isn't very far from Children's Hospital. I would occasionally take a break from hospital life with Johnny and head out for a run on the same route. Kind of a reset of the mind for me. It always helped, and still does. Then I would head back to the hospital, feeling stronger, more confident about how Johnny was doing, almost always with a better perspective. For a good part of the run this morning, my thoughts were on Johnny, as they often are. Today is September 19th. It's one month from the day that I carried him into the hospital for his surgery, and later that morning gently set him down on the hospital bed, releasing him for the last time. We held him those last few hours before he died, but it was a far different situation from August 19th. Back on August 19th, he wasn't connected to anything. I remember he was wiggling, he was looking at me, and making sounds, full of life and energy.

I want to remember everything from that morning, every little detail, everything Johnny did, everything I felt. But I know I will forget far more then I remember, and that's hard to come to terms with. I am already forgetting things. I can remember that it was really nice to hold him, and that he was calm and easy to comfort that morning, but I can't remember exactly what it was like to feel his weight in my hands and arms, against me, as I held him. How we wish we could hold him again for a few minutes, just to remember and experience those feelings again.

We left the house at about 5:45 am that morning. I drove Johnny down to the hospital and Lea stayed back at the house to get Juliana off to pre-school before she would join me later. She was up early with Johnny to help get him ready. She held him close for a little while, before we placed him in his infant carrier for the trip to the hospital. She has told me since that time that she had the usual fleeting thought wondering if that would be the last time she would ever hold him. You can't help but think that sometimes when you have one of these kids with a challenged heart. You just don't know. You stay positive and remain strong, but it's always in the back of your mind. It was that morning for both of us.

By about 8:00 am that morning, I gently placed Johnny down on the hospital bed and the doctors gave him some medication so he would drift off to sleep, then I left so they could get him ready for surgery. About 2 hours, that was it that morning. I wish I could remember more. Lea arrived later and we were able to spend some time with him, but we couldn't hold him, and he was asleep.

For those 2 hours or so, I held him close most of the time. He hadn't had any nutrition since about midnight so I wanted to keep him nice and comfortable and relaxed so he wouldn't wake up, knowing he would be hungry. He occasionally stirred awake and looked around and looked at me. He would wiggle a little, maybe cry a little cry before I would get him back to sleep, but I remember he was really calm and comfortable and easy to hold and take care of that morning. At some point I remember he gave me a little smile, and I remember thinking how nice that was, like he was reassuring me that things would be okay. I remember patting his little backside a lot the way that he liked. It was one of my best comforting moves, and always worked. Not long after we arrived, I wrapped him in a hospital blanket, the way he liked to be wrapped. I remember the room seemed cool that morning. I remember someone had turned on the TV and the Olympics were on with the mute on. I can't remember the events, but I glanced at the TV screen now and then, and later turned it off not that interested in TV at the time. I held him standing most of the time, rocking back and forth a little, and when I needed a break I sat in one of those uncomfortable hospital recliner chairs. We happened to be in the same room that we were assigned when we arrived at Children's Hospital on Saturday, April 26th, 6 days after his birth. I remember holding Johnny and thinking about that and all that we had been through together in the past 4 months, since we had arrived at that room back in April.

And that's about it. Just a father holding his son, giving him comfort, keeping him calm, holding him close. Completely uneventful if not for the reality now that it was the last time we were together like that. Now it's an important and highly valued memory I'm trying to hold onto, and writing about it here will help.

Children are so precious. Hold them close when you can. Your own children, grandchildren, nieces, nephews, cousins, children of friends, however you know them, they are all blessings....I'll probably hold Juliana a little longer, with a little tighter grasp tonight before bed. Why not? What's the hurry to let her go? I've got time and I don't think she will mind. It will be good for both of us.

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.

Johnny's Favorite Places

Not long after we lost Johnny, Lea and I agreed that we wouldn't move, take apart, store away, throw away or change anything of Johnny's without talking about it first. Things that are important to one of us may not have the same meaning for the other person. The bottle rack still sits beside the kitchen sink, with bottles upside down on the holders. I could part with this, but Lea needs it there for a little while longer. The hospital bag I have had packed for Johnny ever since he was born, and used countless times during his first surgery and recovery and many doctor visits, has a place on a chair in our bedroom. It always bothered Lea that I stored it there, but I wanted it there, ready for a moments notice if I needed a quick exit to the hospital. That bag was with me the day he was born, and it was with me the day he died, and probably most every other visit to the hospital in between. The bag still sits there; I'm getting closer to unpacking it but not yet. It's full of papers of various sorts, medical forms, records of his medical history, numerous heart anatomy diagrams with notes and information, his weight gain chart. Lea has shown me some extra latitude to leave it there.

On Friday I stored away what we agreed would be the first big item to be taken down - Johnny's Pack 'n Play in the living room. It was a harder task to do then I thought it would be, and brought back a flood of memories. It was one of Johnny's favorite places. When he was up and alert, we would sometimes lay him in there, and he was always happy about it. We had the platform in the raised up position so it was only about 12 inches below the top edges. We originally had it in the center of the living room, but then moved it close to the large picture window overlooking the front yard. He would lay the same way each time, with his head tilted slightly to the side, looking out the window and up into the big silver maple tree in our front yard. On one occasion I tried to maneuver my face and eyes into a similar position so I could see what he was looking at. It was the tree, the leaves fluttering in the wind, the blue sky and clouds passing in the background through the openings between branches, an occasional squirrel running up the tree trunk and out onto a resting place on the first large branch. We would open the smaller windows on each side so a nice breeze would blow in. I always thought he liked that, since he was always a little hot anyway, and then he could hear the outside noises. It was the closest thing to being outside without actually being outside. I thought of it as his inside hammock.

Sometimes we would rig up this little play center in the Pack 'n Play with these little bright colored animals and rings hanging down so he could grab at them and see them move around. Jules always liked to pick what animals to hang for him, or what colored rings, or she would grab a stuffed animal and do kind of a puppet show like entertainment event for him.

Once it was taken down, I was surprised that we noticed the new void and empty space more often then the Pack 'n Play when it was still there. I can't walk through that part of the house now without noticing the larger view through the window, the empty space where it used to be. A reminder that something has changed. We have a lot of other things to take down and put away. The swing might be next, but I couldn't do it on Friday. Juliana and Johnny had their best interaction time when he was in that swing. She had his full attention, sitting in front of him, hanging different toys for him to play with and reading to him. And he really liked to be upright, able to reach for things and look around. The changing table will also be a tough one for me. At 2 am one morning I was changing his diaper, and upon changing it, he gave me his first real smile. I will never forget it. Suddenly awake and forgetting that all I wanted to do was go back to sleep, I spent the next 10 minutes quietly trying to tickle him and make faces at him to give me another smile. There would be other smiles on that changing table....another one of Johnny's favorite places.

And so it goes for us. Trying to move forward, however slowly it might seem. Knowing we need to move forward, for Juliana, for each other, but at the same time living with the tension that we don't want to forget anything about Johnny and the last four months, and every time we change something or put something away it feels like we are purposefully trying to place distance between us and his memories.

Lea received a call last night, I figured out from her side of the conversation that it was an alumni group from the university where she graduated. They must have asked her something about her availability or what she is up to these days, and she answered with, "I'm the mother of two small children, so I don't have a lot of spare time these days...." It just flowed out of her like a perfectly natural and true statement. I felt something catch in my throat as I heard it. She continued the conversation for some time after that, but I knew it was really hard for her that she had said that. I knew we would talk about it later, and we did. There were some tears, a comforting embrace, a conversation about Johnny and how hard this is.

The process continues. It's been two weeks since Johnny died. We are a family, a home, in transition. We are making progress. But it will take a long, long time, and that's okay.

Caring for Johnny....the last day

It’s been a week since our ceremony for Johnny. I’ll share here in some detail our perspective and what it meant to us. There’s probably too much detail here but I wanted to capture our thoughts and feelings during the ceremony. I also write too often phrases such as, “I will never forget….” but I don’t know other words to use to convey this truth. As we planned and worked on the various parts of the service, it occurred to us several times that this would be the last significant thing we would ever do directly for Johnny. We were still his parents, right to the end, and wanted to honor him with a ceremony that would be a reflection of his life, and our love for him. And that is a primary reason why I want to remember everything about this service…our final goodbye to Johnny.

There was never much debate about whether we would have Johnny with us during the ceremony. For me, it just seemed important to have him in our presence, just a little while longer, and especially since the ceremony was about him. Not to mention the stark reality the presence of the casket would bring to the entire ceremony. And once that decision was made there was no debate about who would carry the casket in and out. It had to be me, with Lea right by my side. I wouldn’t want it any other way. Some suggested maybe this would be too much for me to do, given the emotions of the day. I looked at it the other way…..how could I stand by and let someone else do it? I knew the images of the day would be forever etched in my mind. The images needed to be of Lea and I directly caring for our son’s physical presence, one last time. Who else would carry Johnny? I couldn’t imagine it any other way.

The service was announced to begin at 10:00 am but actually began at 9:45 am with a pre-service produced and directed by our friend Tom. At 9:45 Lea and I departed a back room where we were in seclusion with close family and walked down some back hallways to the sanctuary. We entered a side door. Very few people were in the sanctuary, no one sitting, just a few of our friends taking care of last details. The doors to the lobby area were closed. I noticed some faces looking through the small window panes in the doors.

We were met at the far side of the stage by Amy, another friend who was our designated candle lighter. We proceed to light a single candle, the first of 127 candles, all lined up in a row along a beautifully decorated table behind the pulpit. We then returned to the family gathering room, through the same back exit and hallway through which we had entered.

127 candles….one for each day of Johnny’s life. The candles, all white and in different crystal holders, were of various types and styles, representing the varied nature of Johnny’s days. For more on the beauty and symbolism of the pre-service, including photos, go to the following links:

For a description of the service with photos-->> http://xcerpts.wordpress.com/2008/09/03/a-ceremony/

For the photo gallery, go to thomaseickhoff.com and open the gallery titled “design - memorial service - Candles: 127″

At about 10:00 am, Jim, our funeral director, called our immediate family away to be seated in the sanctuary. Lea and I sat alone in the quiet, holding hands. Suddenly the room seemed way too big for us as a waiting room, too much space for a husband and wife trying to create some form of closeness during a difficult time. We looked at each other, aware of the reality and depth of the moment upon us. Today we would lay our four month old son to rest. I gave Lea a reassuring touch on the hand and told her we would be okay, that we would get through this. That we were still parenting our Johnny, just a little while longer. She nodded in agreement. We talked softly about Johnny. Nothing in particular. Lea said something about his birth that I thought was funny. After a pause I told her I would use it during the ceremony, when I was going to share some thoughts about life with Johnny. We sat silently again, together, hand in hand, in shared disbelief over what we were doing today.

Jim came back to get us and said he was ready. We proceeded out to the lobby area. Sid, one of our pastors, was waiting there at the guest registry. He put his arm around Lea to provide some support; I suggested she wait there with Sid while I walked out with Jim to get Johnny out of the shiny, black, sedan waiting in front of the church.

I had seen the casket twice before, without Johnny in it, of course. The last time I had seen it I was at the funeral home and had asked our director to see it so I could figure out the best way to carry Johnny in and out of the sanctuary. I will not forget how he showed me that the bottom edges had small recessed handles. I couldn’t imagine carrying the casket by the handles. Johnny didn’t have handles…it would be so unnatural to carry him that way. I preferred to hold him as close as possible to how I used to do it, when we had him with us. His head on my left arm, both arms underneath him, supporting his weight, carried and held close to me.

I folded the special blankets we had chosen for the ceremony, to prepare them to lay across the casket. The first blanket was one of the large blankets we had used to wrap him up and swaddle him. Johnny was always most relaxed when he was wrapped up, which could be a problem on a hot day so we found these lighter-weight blankets that worked well. The one we brought to the ceremony had little sailboats and whales on it. Jules used to say, “He needs to be wrapped, get the boat blanket.” I folded it like we were going to swaddle him, and then laid it across the casket. The top blanket was a small, baby-blue blanket that my mom had knitted for him. It was small because it was only about half done. Mom gave it to me the day Johnny died, with tears in her eyes, telling me it was only half done and how sorry she was that she hadn’t finished it earlier. I thought it looked really nice, and the perfect size, lying across the boat blanket.

After I had the blankets in place, Jim helped get the casket into my arms. Immediately, I was aware of the heavier than expected weight of the casket, probably in part due to the emotion of the moment. I will never forget that feeling, standing, holding Johnny in my arms, the reality of the moment upon me. I turned and walked back into the church, and then, for the first time, met Lea’s eyes. Another moment I will never forget, seeing her, for the first time, seeing me, holding Johnny at his funeral. Her face portrayed a mother in anguish. I was also crying at this point. We moved together, Lea taking my arm, on my left side, and paused out in front of the doors to the sanctuary, ready to carry Johnny in. Being together gave us strength. Jim opened the doors, and we slowly began to move toward the front of the church, down the middle aisle.

Words can’t describe the sadness and experience of publicly carrying your son’s casket down the aisle of his funeral, your wife at your side. I wept openly as I carried him, like it was just the two of us. I made eye contact with no one. I don’t really remember even seeing anyone. We were lost in our own world of grief and sorrow, and much of the ceremony was this way. Earlier in the week we had talked about the ceremony and decided to take an approach to plan it the way we wanted, as if no one else was there but us. In the end, we were so honored that so many attended, and so thankful for the support we received, but at times during the ceremony, we were almost unaware of all those present. It wasn’t until the receiving line after the ceremony that we fully realized how many had come to support us during this time.

When we reached the front table, I gently set the casket down, and straightened the blankets. We lingered there for a brief moment, then took our seats in the front row, the left side of the sanctuary.

Sid opened the ceremony with some somber words of welcome and some brief thoughts about Johnny. He shared about his visit to us in the Minneapolis Children’s Hospital ICU just a few days earlier. He said a prayer for us, and for the ceremony.

After Sid was finished, a woman named Melody, from our adult congregation at church, beautifully sang two lullabies, Braham’s Lullaby and Barocha, to her own piano accompaniment. These songs were significant because they were the only two songs that Lea sang to Johnny. I could remember one night back in June when I had put Juliana to bed and was out doing email or something, and Lea was busy with Johnny getting him ready to go to sleep. She had him in the bedroom, and I could hear her singing these lullaby’s to Johnny over the baby monitor, in her soft, tender voice, as only a mother can do.

Melody completed her music, and it was my turn to speak. Some people had reservations about me speaking, wondering how I could do it. The program read “Reflections of Parents” and at one time we were both considering it. On Thursday Lea had read what I had drafted and commented that it was essentially the same thing as what she was writing. We discussed what we wanted to say throughout the day and in the end, decided that I would speak for both of us. My words are included in a previous post titled, “Reflections of Johnny’s Parents”. People were praying for me, and I got through it. It wasn’t easy, in fact it was one of the most difficult things I have ever done, on a day that was full of things that were the most difficult I have ever done. But I was determined to do it, to speak about Johnny, and share some thoughts about him. I knew that no one could convey the depth of emotion, love, and sorrow surrounding the moment except one of his parents. I was glad to shoulder the burden for both of us.

When I was finished, I remember feeling a unique completeness about it, almost like if I didn’t say another word for the rest of my life, it would be okay, like my purpose for being able to speak publicly was fulfilled. I remember carefully walking down the steps from the stage, feeling exhausted and concerned I might fall. I remember lingering briefly by Johnny, I recall placing a hand on the casket, I can’t quite remember. And then I sat down beside Lea.

A young man named Ricky began to sing “He will Carry Me”. I don’t remember the first half because the emotion from speaking and trying to hold it together overwhelmed me and I cried and sobbed in my seat, releasing emotion that I had held inside. For a time, Ricky led contemporary worship at our church, and I had asked him to sing for us. He brings a passion and reality to the music and lyrics that I wanted for this particular piece. If I could sing, I would want to sing like Ricky, which is why I wanted him to sing for us.

The song “He will Carry Me” was new to me. Others later told me that it was popular but it didn’t mean anything to me before the day that Johnny died. Maybe I had heard it on the radio but it had not made any impact, I don’t know. The night we came home from the hospital after we lost Johnny was a tough, tough night. I went out to the car to unload some things after we had Juliana asleep, and noticed that someone had left something on the front step. I went to look closer to see what it was and found some beautiful roses and a CD labeled, simply, “some songs”. I brought the flowers inside, placed the CD in a player in our bedroom, and began to listen. Track two from the CD was “He will Carry Me” by Mark Schultz. The lyrics were powerful to me and greatly ministered to me during such a difficult time. After about the third time through the song, I realized I had just found the first piece of music for the ceremony. I played the song for Lea, and she was equally moved.

I called, You hear me,
I’ve lost it all, and it’s more than I can bear.
I feel so empty.
You’re strong, I’m weary,
I’m holding on, but I feel like giving in,
But still, You’re with me.

(chorus)
But even though I’m walking through the valley of the shadow,
I will hold tight to the hand of Him, whose love will comfort me.
When our hope is gone, and I’ve been wounded in the battle,
He is all the strength I will ever need. He will carry me.

When Ricky was finished, two individuals from church spoke words of encouragement to us. Alice spoke first, about her visit to us in the hospital, and her observations of us going through this challenging time. Jay spoke next. Jay leads our adult congregation at church and has known us a long time. Both Jay and Alice greatly encouraged and supported us with their kind and sincere words, and we were thankful and honored to have both of them speak at the ceremony.

After Jay and Alice were finished, Melody and Ricky sang a beautiful duet of “My Redeemer is Faithful and True”. We wanted to include a familiar song like this at some point in the ceremony. This song seemed especially appropriate at this time. During the song, I noticed at one point that Lea had her hand up slightly in a sign of worship.

As I look back on the road I’ve traveled,
I see so many times He carried me through,
If there’s one thing that I know in my life,
My Redeemer is faithful and true.

My Redeemer is faithful and true,
Everything He has said, He will do,
Every morning, His mercies are new,
My Redeemer is faithful and true.

And in every situation,
He has proved His love for me,
When I lack the understanding,
He gives more grace to me.

My Redeemer is faithful and true,
Everything He has said, He will do,
Every morning, His mercies are new,
My Redeemer is faithful and true.

The song is as much a prayer and a hope for the future as it is a statement of where we are at now. I hope that in a year, five years, many years into the future, we can look back on these days and sign this song with the same commitment and confidence.

Following the song, Alice read scripture for us - Isaiah 40:11 and Mark 10:13-16.

Before we had children, Lea had a sense that God had given her the verse from Isaiah to cling to. And in Johnny’s last couple of days in the hospital, Lea had claimed this verse for him.

“He tends his flock like a shepherd:
He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.”

Lea considers the verse one of her life verses for parenting. “….he gently leads those that have young.”

The passage from Mark is a well known passage where Jesus says, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these…”

Our senior pastor Rich then presented a meditation on two different thoughts. If God had spared Johnny back in December, when he was in the womb, why didn’t he do it a second time after this recent surgery? Both times people prayed in earnest. But the outcome was very different. The second theme was what happens to infants when they die and the biblical interpretation that God can have a relationship with babies, even as early as before they are born. Our pastor delivered a sincere and honest message and we so appreciated that it was parallel with our thoughts and feelings during this time. The “Why?” questions linger for us, and he didn’t present a list of answers, but instead offered the honest assessment that no one knows why God responded the way he did. I have had people tell me that it was refreshing to be in church and have the pastor openly admit that we don’t have all the answers. What we do know is that God is with us during these difficult times. We certainly do not have all the answers, and probably never will. That’s okay. We have enough answers and thoughts about what has happened to keep us going, maintain hope for the future, and stay true to what is important for our family.

Over the years, the next and final part of the ceremony will most likely be remembered as very significant and important, especially for Juliana. When we were planning the service, we knew how important it would be to include Juliana in the ceremony. The challenge was to include her in a significant part of the ceremony, but at the same time knowing that you can’t expect a toddler (she will be 3 in November) to sit still and be occupied for one hour. We debated the beginning or the end, and concluded that something at the end would be best, so she could walk out with us when I carried Johnny out to conclude the ceremony. As with every aspect of losing Johnny, we had to include Juliana in the process, to allow her to experience in a meaningful way what her mom and dad were experiencing. Not including her would alienate her and confuse her as to why mommy and daddy were so sad. Once again, bringing her in close to the pain and sorrow is always difficult to consider, but we are confident it must be done so she can grieve, and heal, with us.

Sid gave a brief background summary that I had prepared for him before we began the conclusion of the ceremony. He explained that after Johnny had died, after we had spent some meaningful time with him saying our goodbyes, we had to then go home and explain to Juliana that she had just lost her little brother….a conversation I will never forget. Afterwards, we then drove back down to the hospital as a family, for Juliana to say goodbye to Johnny one last time. I am working on a future post that documents the love and tenderness of Juliana that night, and the following days as she processes through the grief and loss of her little brother. I hope that one day it will be of great benefit to her.

Sid shared that we departed the hospital together with heavy hearts, loaded Juliana into her car seat and started to drive home. Soon after we were moving, Juliana said, “Let’s play the Hallelujah song.” We had the Newsboys “Adoration” CD in the van CD player and had been playing that song (Track 10, “Hallelujah”) the day before. I found the song, and hit the play button. I adjusted the rear view mirror to see Juliana’s face, and saw that she was smiling. She was calm, looked happy, and was listening to the music with a smile across her face. We didn’t say much on the way home, but the music played on. Lea and I in the front seats, tears falling from our eyes, as we listened to the lyrics, with Juliana smiling in the back seat, listening to her song. Our son had just died in our arms earlier that afternoon, and now the van was filled with Hallelujahs…..in some sense to us, it was very beautiful.

I’m looking up, holding out,
Pressing forward, without a doubt;
Longing for the things unseen,
Longing for the things I believe,
My true country.

We hope and wait, for the glorious day,
All tears will vanish, wiped away
On the saints this day already shines
On the saints this day already shines
It already shines.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
At the top of our lungs, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
With all our breath, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

When Sid concluded the story, Lea and I departed the sanctuary to get Juliana. As the doors opened to the back of the sanctuary, there she was, all smiles, running to meet us, in her lovely little white sun dress with a printed pink rose pattern, two little pink barrettes, one above each ear holding back that long, fine baby hair of hers. It was wonderful to see her at that moment, and it greatly lifted our spirits. We paused to say hello, lift her into our arms, and to give her some hugs. Then, as a family, we reentered the sanctuary and headed down to the front, to Johnny’s casket.

Tom had designed and prepared a flower arrangement that symbolized our family. Four roses - two large roses that were opened, and two rose buds. We carefully helped Juliana lift one of the rose buds from the vase, and place it on the casket, tucked under the blue blanket, a symbol that Johnny was no longer with our family here on earth. Lea then held Juliana while we walked over to the last of the 127 candles lit to signify Johnny’s life. I carefully carried the final candle over to a large unlit candle near the casket. There I used the 127th candle to light the larger candle, as a symbol that Johnny’s life with us had ended, and he was now with God. I placed the 127th candle back in position on the table, and together, as a family, we sat down.

At that point, having symbolically said good-bye to Johnny, and placed him in God’s hands as a family, the Hallelujah song began, while photographs of our family’s life with Johnny were shown as a slide show on the large screens at the front of the sanctuary. Juliana immediately recognized the song and enjoyed looking at the photographs as each one was displayed. It was a very special time for our family, there with Juliana, listening to the music and seeing those photographs, each one so precious to us now. As a family we had said goodbye, and now we were remembering our 4 months with Johnny, captured on the photographs.

As the song ended, the photographs were replaced by the words from the chorus, and Melody and Ricky invited the congregation to stand and sing. We waited in front with Juliana, through a couple of lines of the chorus. I remember thinking how nice the congregation sounded, singing that chorus for us.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
At the top of our lungs, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
With all our breath, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

I looked at Lea, she looked at me. I said, “Are you ready?” and she nodded. Lea held Juliana, and together we approached the casket. I carefully lifted Johnny into my arms, and with Lea on my right side, holding Juliana, we carried Johnny out to the sweet sound of the congregation continuing to sing the chorus of the Hallelujah song.

If you have read all of this or even a part of this long account, thank you for allowing us to share another chapter of Johnny’s story with you. The ceremony for Johnny was one of the most significant and meaningful things we have ever been a part of. We wanted to honor Johnny, give thanks for his life, however brief it was, and share with others that he had great value to us and a tremendous impact on us that will not be forgotten. We also wanted to demonstrate our commitment that although we have more questions than answers, we will remain steadfast in our faith through this. There were countless people that helped make this a reality for us, and for all the help, we will be forever grateful. The ceremony was a time of healing for us, more so than I could have imagined. And for that we are also very grateful.

Later in the afternoon that day, our families and some friends gathered at the cemetery for a burial service. I will share some thoughts on this experience at a later time.

I was with a trusted friend this morning that has known me for a long time. We were talking about everything that has happened to us, about our family, our loss, Johnny, and what we are doing to try and move forward. I told him that with each passing day I am more convinced that Johnny may have taught me more about life, love, joy, sorrow, what is important, and a multitude of other things in his brief four months then what I had learned in my entire life before I knew him. I miss him dearly, but his positive influence on me and our family continues....