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....