Sunday, April 19, 2009

The Marker

The woman called me late Friday afternoon while I was driving in the car, not far from home, Good Friday before Easter. She was excited to reach me and tell me the news - "It's in! The guys just installed your marker." She was glad to tell me because I had talked to her a few times the past several days, trying to track down the status of Johnny's grave marker with the hope of moving up the priority list. After that last post, I was highly motivated to make some calls and try and get things moving on the placement of his marker. Originally I wanted to have it done by his birthday, but then it took on more meaning to get it done by the Easter weekend. I was really glad to hear the news.

Christmas will forever be associated with Johnny and the news that he would not make it full term. He did of course make it and then some. For some reason I got this idea that I wanted something really meaningful to do on Easter and seeing his marker in place for the first time became the meaningful event I was looking for.

I got off the phone and changed course to head to the cemetery. I had to see it, and immediately started thinking of when I could go there with Lea, but thought I should see it first, in case something wasn't right. What if the name or date is wrong? Hopefully it would be okay.

It was a beautiful afternoon, warm and sunny, no clouds. A beautiful spring day. A drove into the cemetery and headed to where Johnny is. There were a lot of people around, I guess because it was Good Friday. I pulled off and parked the car and could see the stone in place, without making out any of the details because of the angle of the surface flat with the ground and how far away I was. But it was definitely there. I got out and walked over.

I've been to Johnny's grave many times since last August, but seeing his marker in the ground, for the first time, immediately brought back a flood of memories and emotions that I was not ready for. For a moment, it nearly knocked me down. It's difficult to put into words what it means to see your child's grave marker for the first time. We live with the reality of his death every day, but for me I think the permanence and finality of seeing that marker for the first time added another dimension to the whole experience. Another dose of reality that this really is part of our lives.
The marker turned out to be just how we wanted it. We were glad we searched so long for the right design, verse, inscription, and stone.

I stood there in the sunshine, gazing down at the marker for a long time. It was wet, they must have poured some water on and around the marker after disturbing the grass. I watched the stone change from dark to light as the moisture evaporated quickly off the granite in the sun. The retreating water left a film of sandy haze on the polished granite border so I went to the car and got an old towel out of the trunk and returned to the marker to wipe and polish the border to a shiny appearance. I picked some sticks and leaves out of the grass in front of the marker, where Johnny is. If you know where to look, you can still see the faint outline of the edges where they cut the sod for his burial.

Good Friday, and there I was, looking at the grave marker of my son, for the first time. I thought of God, seeing the tomb of Jesus, His Son. Both laid to rest, One long ago, one recently, now both in heaven. Johnny with Jesus. We know Johnny is in a better place, but we miss him... It challenges our faith daily....

We were going to go to a special church service with some friends that night. I went home and told Lea we needed to take advantage of the baby sitter we had arranged for Juliana to go somewhere just the two of us. She later told me that she immediately knew where I wanted to take her and that the marker must have been installed.

Lea and I spent some time there together that evening. It was good. The kind of good that's difficult but good, that we know all too well these days. Tomorrow is his birthday. We will be together. Difficult but good.


Tuesday, April 7, 2009

Particular Parents

Sometimes Lea and I don’t agree on certain things…imagine that. For many decisions, there is a lot of back and forth discussion before we arrive at something we can both live with. We’re both particular about many things and we can have strong opinions. It doesn’t make things easy and decisions that should not be so difficult become a long and drawn out processes of compromise. Sometimes we go back and forth long enough on an issue that we talk each other into seeing a different point of view only to realize that we have switched sides are still on opposite ends of the spectrum.

The decisions about Johnny’s grave marker are a good example of this. Arriving at a final decision required significant discussion and multiple designs. I’m sure the person we were working with thought we were strange at times. By the time we finally agreed on a design and stone, and placed the order, it was going to be too late in the year last year to install the marker. Winter was setting in, and the frost was already in the ground. This was kind of a disappointment - that we didn’t get this done before winter, but we just felt like it was important that the marker was something we both could agree upon and feel really good about together and individually. And so it required a lot of time. Multiple designs of the layout, the artwork to include, the layout, and finally the stone. We finally agreed on a stone that comes from a quarry in India. Yes, as in India on the other side of the world, not Indiana.

Now that spring is here, I called the monument company to check on the status. The stone is made and is somewhere in Wisconsin, ready for delivery to the cemetery any day now. It’s just a matter of time now and the need for good weather so things dry out. We will both be glad when the marker is in. It’s always felt like unfinished business to me, so we will be glad to have that done. A permanent marker to honor Johnny’s life.

Right after Johnny was born, I was talking to his cardiologist and she described him as “surprisingly complex”. I always liked that. Johnny’s heart was complex, and so are his parents, and the whole process of choosing a marker for him illustrates the point. But we are who we are and hopefully our particulars and complexities strengthen us more than they create challenges for us.

As we have started to talk about the next few weeks and what they mean to us, we are again keenly aware of our differences. We will need different things, space to move through these comings days how we need to, so they are meaningful, healing, and that whatever the path we take we will come through united in our commitments to each other and our family. People continue to tell us they are praying for us and we are thankful for that. God hears those prayers and continues to sustain us daily. Thank you.

Friday, March 27, 2009

Thinking of Johnny

I was traveling on business a few weeks ago and was going through some final preparations before presenting to a large group of people at an industry conference. One of my colleagues that was with me asked if I was getting nervous as the room was filling with people. He was going to introduce me before I gave the presentation. I speak publically all the time for my work so presentations to large groups of people are routine. I looked at him and said, “No.” Clearly he was the one that was nervous.

Before speaking publically in front of a group of any size, my mind often drifts to the same place…..to Johnny’s funeral. I spoke that day about Johnny, our brief time together with him, what he meant to us, our grief, and our sadness. I shared about the excitement of his birth, the joy of seeing his big sister love him and play with him, and the emptiness of our loss. I doubt I will ever speak in front of a group of people again that is as significant as that day. That’s what I think about every time now before I speak before a group of people. Compared to that day, whatever I am going to present at the moment seems much less significant.

And so it goes for us. Johnny’s life and death and all the events in between remain a central focal point and backdrop for everything in life. In many ways, all the joy, emotion, and intensity of that period of time is what the experience of today is weighed against. Our four months with him after his birth was both wonderful, especially when we had him home, and incredibly intense and difficult at times, when he was in the hospital and during his surgeries. To this day, despite some of the hard times, I still believe it brought out some of the best in us. After his death, we felt somewhat lost for awhile. What do you do when the person that creates so much intensity and emotion in your life, in addition to the fact that you love them so dearly, is suddenly gone? Even now after the time that has passed I often find myself pausing with the thought that something so significant is missing from our lives. It’s easy to figure out what that feeling is. It’s Johnny.

I finished my presentation that day just fine. Everything went well. My colleague was relieved. I’ve developed some good skills to function well at the task at hand, even with Johnny on my mind. Like most things, my enthusiasm and ability on the outside anyway probably doesn’t appear any different during many everyday tasks. But inside, my thoughts and perspective are often much different then they were just a year ago.

It’s been 7 months since we said goodbye. Next month is Johnny’s birthday. He remains in our thoughts in all that we do, and we wouldn’t want it any other way.

Tuesday, January 27, 2009

A new year

All of a sudden, the new year was upon us. Christmas was over and we would soon be in a new year. December 31st was tough. The idea that everything with Johnny would soon be referred to in a time frame of “last year” was hard. It just seemed to put so much distance between us and our life with Johnny, that all the time we had with him was “last year”. Like so often is the case, we didn’t see that coming. The theme is the same, though. Needing to move forward, and live life with each other and with Juliana, but not wanting to place distance between our life with Johnny. It’s inevitable. Here we are, almost through January.

Juliana is doing well. She still talks about Johnny all the time. All the excitement and emotions of seeing so many family members and saying goodbye to them as the holidays concluded really brought back some thoughts of Johnny for Juliana. That “saying goodbye” piece for her triggers something, and reminds her of saying goodbye to Johnny for the last time. We had a lot of questions from her about where Johnny is, and if the same family members she said goodbye to are with Johnny, or if she will ever see them again. Some things still break your heart. Like the time her big stuffed animal dog friend named Lucy was sad, as Juliana told me. She came walking in, holding Lucy tight, comforting her, just like I do for Juliana when something is wrong. I asked why Lucy was sad, and Juliana said in her sweet little quiet voice, “She’s sad because her baby died….something was wrong with his heart.” I scooped them both up on my lap. We talked about it for awhile. I held Lucy and Juliana both together, offering comfort while we talked. When things like that happen, I am taken back to the questions of why this has happened to our family. As I have said, I have seen many beautiful things happen to our family because we knew Johnny and had him with us even for a short time, but I can’t help think sometimes of all the great and wonderful things that would be possible if he was still with us. We still miss him very much.

This month has been a tough one for Lea. “The Days” as I think of them, from the 18th through the 29th of each month, continue to have much significance. That has been especially true for Lea this month. Christmas was so full of activity, although it was hard at times, I think we were too busy to really be taken back to the memories as we often are during a quieter month.

But it’s not all sadness. Sometimes I think I write too much about the hard times, the difficult questions from Juliana, and the grief and sadness. There is plenty of joy and love in our house, and we are thankful to God for that. I don’t have much concern anymore that what has happened will tear our family apart, as can sometimes happen we have been told. We are doing okay and moving forward together, by the grace of God, which is what is important. Now and then people continue to send notes of encouragement and thoughts toward us that truly amazes me - that people still think of us. If you do and if you still pray for us, thank you.

What will this new year bring for us and for our family? Only time will tell us…one day at a time.

Saturday, January 17, 2009

Tricuspid Atresia

The entry below is from my other blog, from January 17, 2008. On that day we learned for the first time that Johnny had a challenged heart, Functional Tricuspid Atresia.

January 17

Our spirits had really been lifted from the appointment the previous week. We were optimistic. They had expressed some concern about our baby’s heart last week, now that they had a good chance to look at it since the fluid in his chest had dissipated so well. But it really didn’t seem that serious, just some words like “we can’t tell much for sure, so we will have a specialist take a look, it’s probably fine”. The woman that did the ultrasound at the last appointment was really kind and enthusiastic. Lea remembered her from our appointment when she was pregnant with Juliana. Her name was Patty. She would say things about our baby boy like “Oh, there’s his beautiful face” and “look at those beautiful feet and legs”.

It was easy to think our baby is making a comeback! Thanks be to God, a miracle! What we have been praying for! How could there now be a problem with his heart, after he had overcome so much. So we didn’t think too much about it.

The pediatric cardiologist came in and with another woman working the ultrasound, the exam began. They talked a lot during the exam, in hushed tones, working quickly when the baby was in good position for them to view what they needed to see. The doctor saying move there, over here, need to see this, and that. Then the words started to emerge, we couldn’t understand everything they were saying but words like “defect” and “missing” and “undersized chamber” began to be part of the whispered conversation. At one point I asked if everything was okay and the doctor said something about needing to work quickly, while they had a good view. So I sat down next to the bed Lea was on, and my heart began to sink. How could it be? After all this, how could there be a problem with his heart?

It seemed like the exam took over an hour. As I sat looking up at the monitor, I wondered how bad the news would be. Would he live? What were his chances? I couldn’t take my eyes off the monitor, even though it really didn’t mean much to me. It was a close-up of his heart, beating away, full of life and energy. It seemed beautiful to me.

The doctor left and they had Lea sit up. She said she would come back for us in a few minutes. We talked to the woman doing the ultrasound, she said everything else looked great and commented how well the baby was doing compared to the chart from a few weeks ago. We didn’t talk much about the heart.

The doctor came back and led us down the hall. As we were walking down the hall I became filled with dread. I knew where we were going. As you enter the hall from the reception area, there is a room off to the left, first door on the left down the hall, with a sign on the wall that says “Family Room”. Inside the room is a small loveseat sofa and chair. The furniture looks terrible. It looks like what you would find in the lobby of a Motel 6. There are two end tables that are beat up and some old lamps. There is a TV in the corner with an old VCR machine. There is only one video, it’s always there on the table – “Hoosiers”. There is a kleenex dispenser on the wall. The room seems depressing. Somehow we had avoided this room, despite the bad news back before Christmas.

She led us in the room and closed the door. Here we go, I thought. Take a deep breath. I sat on the loveseat by Lea. I said to the doctor that “it can’t be good that we are in here”. She didn’t smile. She produced a drawing of a heart. She began to tell us about our son’s heart condition. He has a condition called Tricuspid Atresia with several variations, a rare congenital heart defect. On a scale of 1 to 10, it ranks a 9 for seriousness. He will need surgery, the first one right after birth. It will be a long road. The final surgery, when he is around 2 years old, is the most complicated and serious (Fontan procedure). Some kids don’t survive one of the surgeries. Some have neurological problems from the anesthesia and having surgery when they are so young. Some kinds do quite well. If he survives, he will get tired when he is active. He will probably be limited from participating in competitive sports. He may not live past his 40’s or 50’s, although there are unknowns because the techniques of the surgery and treatment options continue to evolve.

The obvious question – is this related to the fluid problem he had on his chest? She said no, that the defect forms at 8 weeks of age, when the heart is formed. The heart defect probably occurred before the fluid problem occurred.

Lea took the news hard. At one point she said “Dave does triathlons and runs, our son will want to do those things with him.” This really broke my heart. I was thinking the same thing, but to hear Lea concerned about it was really tough.

From hear on out, they want to see us twice a week. The critical issue now is that he must go full term. Before, the plan was that if the fluid returned, they would deliver him early with chances increasing each week that he remains in the womb. Now if he were to deliver early, he would be too small to survive the first surgery he needs to live. The doctor had an ominous tone to her voice when we talked about this. She talked of the decision being a tough one that only the parents could make. God, please spare us from having to make this decision. I really can’t imagine. The fluid returns, and two difficult choices. Deliver him early to reduce the fluid but put our son at high risk to save his life through the surgery he desperately needs, or allow him to remain in the womb, knowing if the fluid does not reverse again, he will probably die of heart failure before delivery. God, please let him go full term!

The appointment ended. It’s unbelievable to me how with many of the appointments we seem to leave on an extreme high or low. There appears to be no middle ground. We were there for about 4 hours again. Always a long appointment. We left somewhat in shock. Another ice cold day outside, around zero F, to fit my mood. Mom and Dad were home taking care of Juliana. We got home and I brought them into another room to tell them the news, so Juliana would not hear it. It was tough. The news was still sinking in even as I shared the news. I just got off the internet, learning more about the heart problem our baby boy has. It’s tough to read this info and think about what our future holds. The journey down this long road continues.

Sunday, December 21, 2008

Remaining Hopeful

Johnny would have been 8 months old yesterday.

We will soon pass by a day when the time since he died will be longer than the 4 months of life he had when he was with us. It will be more time without him then the time we had with him.

We see babies all the time that are 7-8 months old and we can't help but wonder what Johnny would be doing now. What sounds would he be making? Would he be trying to say a few words? Would he smile regularly for us now? Would he be crawling yet? Crawling...that's incredible to think about. Johnny....crawling across the floor. Lea said something yesterday that is so true. We were spending some time together looking at some of his photos. She said, "He's stuck at 4 months old." And she's right, at least in our photos. One of the greatest things about being a parent is watching your kids learn and grow and discover and do new things. We experienced that with Juliana and it really was special, with each milestone she accomplished. I can remember cheering wildly when she crawled across the floor for the first time. She just happened to do it for the first time on my birthday. With babies and toddlers it's particularly amazing because the changes happen rapidly and frequently. With Johnny, we are left to our imagination.

Yesterday, I visited the cemetery where Johnny is buried. I actually ran there, which I do most of the time when I visit him. The cemetery is along one of my most common running routes. I cross the road when the landmarks tell me it's the right place, I duck through a small gap in the lilac bushes, then a little run up a slight hill, and I'm right there. I ran there yesterday during a raging winter storm. It was snowing hard, blowing and cold. After I got there I brushed the snow away from the ground to get down to the grass. Lea had previously brought a wreath to place there that is on display on a stand, standing as a monument of the location as the ground gets buried in snow. I lingered there for awhile, in the cold, thinking about Johnny, and what he might be like at 8 months. The snow swirled around me, the wind blew against my face. But I was alone with my thoughts and barely noticed. It felt good to be there.

Today, December 21st, marks the one year anniversary of the ultrasound appointment when the doctors told us there was no hope, and that Johnny wouldn't live beyond 2-4 more weeks in the womb. I remember that day so well, and all the emotions that descended upon us. Even before that December 21st ultrasound appointment, the news was not so good for Johnny. My journal from a year ago on December 20th includes the following:

Today a woman from the hospital called to talk to us about scheduling an appointment to consider and plan a memorial service. It’s difficult to continue to seek a miracle when those trying to assist are asking you to plan for the worst outcome. At the same time, I have come to understand they are trying to prepare us for something so we are ready and will not regret being unprepared when the brief time has come and gone.

Even before the doctors told us there was no hope, and that Johnny wouldn't make it, others were already telling us to prepare for the worst.

But Johnny did make it. Miracles happened, not quite all the miracles we wanted but wonderful things happened for Johnny, God spared him from what the doctors said would be certain death and he went full term, born April 20th. And he was with us about 4 months. We are forever changed and full of thankfulness for the time we had with him.

At the cemetery, some sudden chills brought me back to the present. My running clothes were a little wet from the distance I had already run and the inactivity of standing in the cold and blowing wind in wet clothes was starting to chill me. I turned and started to walk away and then started to run. Like almost everytime I am there and then I leave, I had the same feeling of something incomplete. I think it will always be that way. Something is incomplete. Johnny isn't with us.

I turned back and walked to where I had stood just moments before. I knelt down on the frozen ground and placed my hand on the grassy place I had brushed off that was already almost lost in white from the heavy snow. My dark gloved hand was in stark contrast to the white ground. I told Johnny I loved him, that we missed him so much, and that we would never forget him.

A year ago we tried to remain hopeful for Johnny, despite all the indications that things looked grim. Many joined us in praying for a miracle and God granted that miracle. There was hope, and that hope turned to life. God was good to us, and was faithful to give us a son. Today the hope is that we will not forget Johnny and all the lessons we have learned and the blessings we have received. I want my life to forever be different because we loved and knew Johnny. We were truly blessed to care for Johnny for four months. God remains faithful to us. It's almost Christmas. There is hope.

Sunday, December 7, 2008

Meeting Johnny

December 7 marks the one year anniversary from the date that I count as the date we met Johnny. Last year, December 7, 2007, was our 20-week ultrasound. We arrived at the clinic in the morning. I think the appointment was around 10:00 am. It was a Friday. I remember being really excited. We were going to find out if our baby was a boy or a girl.

December 7 this year was on a Sunday. So on the previous Friday, I went down to the clinic where we had the ultrasound. I walked into the reception area and sat down, just taking it all in. The sights, the sounds….in many ways, nothing had changed. The woman at the reception area was the same. After the complications of Johnny’s pregnancy were known, we were at that clinic on a regular basis, sometimes twice a week, for almost the next 5 months. The “r” in the word “Perinatal” is still broken on the sign by the door that you walk into. There are comfortable reclining chairs in the waiting room with signs that indicate those chairs are reserved for pregnant women. Everything was the same. There were several pregnant women in the waiting area, most looking uncomfortable, some with partners, some alone. Nothing had changed.

I sat there and remembered the events of that day, one year ago. It was all coming back to me. We had never experienced anything like the shock we experienced that day of learning that there were complications with the development of our 20-week old baby. We wouldn’t learn about Johnny’s heart condition until weeks later. On December 7, in many ways, the prognosis was much worse and the question was if the baby would live or not.

I have another blog with a variety of subjects. It’s never been made public. I recorded some of the thoughts, hopes, and fears of Johnny’s pregnancy while we were walking that path. Some entries are full of exhilaration and hope. Others are heavy with doubt and fear. There is anger, there is joy. Here is an excerpt from what I wrote on December 7, 2007:

Sometimes you can just feel the difficulty creeping into your life. We went in for our 20 week ultrasound. As the technician viewed the first images of our unborn baby, the air in the room seemed to grow thick and the silence was more than just words unspoken. Our baby was not well. Other doctors arrived, discussion about what they were seeing. Then down the hall to a counsellor. More discussion based primarily on statistics. Suggestions for testing. Procedures. I was holding it together okay until I called my parents. I would then learn that one of the most difficult parts of this journey would be sharing the news with others, especially the ones you love.

In all the consultations, exams, discussions, and the waiting that day, we left there without knowing if our baby was a boy or a girl. That information just wasn’t that important at the time. The health of our baby was the only focus. A few days later we learned our baby was a boy.

As I sat there at the clinic, I overhead a couple sitting a few chairs away from me. They were talking in the hushed tones you use in a clinic waiting room, but it was quiet, and I was close to them, so I could hear a few words now and then. They had the excited voices of a couple expecting a new baby. At one point, she asked her husband or partner, “Do you have any secret hopes for a boy or a girl?” She didn’t look very pregnant. I guessed they were in for a 20-week ultrasound exam, and they were going to find out what they were having. He complained that they had been waiting a long time. She said she was hungry and got out a breakfast bar to eat. He told her to make sure she was drinking plenty of water. I sat there and listened to them. Lea and I were those two people a year ago.

The memories kept coming back. It was good to be there. At the clinic, nothing has changed. For us, everything has changed. We keep moving forward, talking, growing, grieving and healing....and remembering.

Friday, December 5, 2008

Brothers, Sisters, and Cousins

The night after Thanksgiving, Juliana and her cousins were having a great time playing together. Her cousins are all boys, and they are all older than her (ages 4-8), but they are really nice to her and include her in their little group. We had been there a few days, so Juliana was really comfortable with them and was having a great time. She was laughing and having so much fun, it was hard to end the fun and tell her it was time to get ready for bed.

When Lea was putting Juliana to bed, she started talking to Lea a lot about Johnny. Juliana said, “I want to tell Johnny something.” Lea asked her what it was and she said, “I want to tell Johnny that I love him.” Lea told her they would tell Johnny during prayer time, which she did. Later, Juliana said, “I have something else that I want to tell Johnny.” This time it was, “I want to tell Johnny that I think he is sweet.” Later, Juliana again said she had something to tell Johnny, this time it was “that she really missed him”. Lea said that she missed Johnny, too. Juliana added that she wanted to also tell Johnny that Daddy missed him, too.

Since we have returned home, Juliana has been talking a lot more about Johnny. She never completely stopped talking about him, but there is really a lot of conversation about Johnny now, much more then before our Thanksgiving trip. She also brings up wanting a little sister on a frequent basis. It’s never a little brother…it’s always a little sister.

It seems like something happened with Jules spending so much time with her cousins. Some understanding that they are brothers and have a great time with each other, she had a great time with them, she had a brother but doesn’t now. Maybe she has some deeper sense of what could have been with Johnny that is now lost, maybe emotions that she feels that she probably can’t verbalize or explain to us. It’s difficult to know exactly what she is thinking, and I know she doesn’t fully understand, but something has changed.

Last night at dinner, she talked about a little sister again and said, “I would like a baby sister, and I want her to be with us forever. Johnny’s not here anymore.” Yesterday afternoon she asked what Johnny is doing in heaven now that his heart is fixed. We continue to talk about it, answering her questions, and asking her questions to keep the dialogue going.

I write a lot about Juliana, what she says about Johnny, and how she is processing it. Maybe I spent too much time thinking about it, I don’t know. I might write about Juliana and how she is doing more than I write about us. But something tells me that it will be very important to Juliana someday to know and understand what these months have been like for her. So I record these events with Juliana as they unfold, hoping that I am capturing what is important and that it will be meaningful for her. I know it is for us. Something has changed for Jules. So we are watching and listening closely to her and all she says.

Sunday, November 30, 2008

Thanksgiving

My sister has a wonderful tradition at Thanksgiving. She keeps a special journal that she brings out only for Thanksgiving, and in the journal she records what everyone is thankful for on that day or for the previous year. We usually go around the table or in order by age. You need to be present to get your entry in the journal. We missed a few Thanksgivings together, but we were here last year and we were together again this year.

She read the entries from last year. Lea and I both had made the comment that among other things, one of the things we were most thankful for was “the baby on the way”. Last year at Thanksgiving Lea was about 18 weeks pregnant with Johnny. We actually told my family when we got here, primarily by Lea coming in the house with a coat on and taking off her coat in front of everybody. She looked great, and was starting to show enough that we knew our family would notice right away, which they did.

It was a great week here last year, we were so happy that Lea was pregnant with our second child. Everything seemed to be falling into place for us. We were filled with thankfulness, and feeling really blessed. We got home, and about a week later had our 20 week ultrasound that revealed complications with the pregnancy, and told us that all was not completely well with Johnny. All the events of the past year unfolded from that point. It’s incredible to consider all the events and circumstances of the last year.

This year, when it was our turn to say what we are thankful about, Lea and I again both had the same thought. We are both thankful that we knew Johnny, and that we had him in our lives for the time that he was with us, both before and after his birth. One could say there is tragedy in Johnny’s story, but that isn’t the whole picture. There is also much in his brief life that is beautiful. And that’s the part of his story that we are most thankful for.

Tuesday, November 25, 2008

She's Three

Juliana turned three last Friday. We had a little party for her on Saturday. She requested blueberry cake with blueberry frosting, so that’s what we had (blueberry muffin cupcakes, actually), inviting a few of her friends and their parents over to our house. Her birthdays have served as a reminder for me to really reflect on how she is growing up quickly. This year was no different, especially given the events of the past year and all that she has been through with us. Friday was also Lea’s birthday. Jules was born on Lea’s birthday three years ago, which despite the very difficult labor for Lea at the time, it’s now a special occurrence to celebrate the birthdays of two people that are very special to me on the same day. Like so many things for us these days, Lea’s birthday had its mix of highs and lows. Even now, Johnny is never far from our minds. Walking with and supporting Lea as she goes through the process and journey she is on remains one of the most difficult things about this for me. I wish I could carry more of the burden for her. It's just hard to see Lea go through such a difficult experience. The bond between a mother and her baby is strong.

Yesterday we drove 600 miles to visit family for the Thanksgiving holiday. So I had plenty of time to think about Lea, Juliana and many other things. It was the 24th....so much on my mind. We debated whether to make the trip on the 24th or not but decided we didn’t have many other options due to a variety of scheduling things.

During our trip, we stopped in a small town for dinner. We went into the place we stopped at to take a seat. Juliana immediately noticed a young couple with a little baby, I am guessing the baby was about what Johnathan’s age would be (7 months). I tried to steer Jules over to the opposite side of the restaurant but she wanted to sit closer to the baby to watch him. She loves babies. He was a cute little guy. She kept her eye on him during dinner and talked about him a few times. She asked me what his name was.

On Saturday, after Juliana’s birthday party, I was going through the bedtime routine with her, reading books and having story and song time. At one point she said, “Are we going to have a birthday party for Johnny?” I told her that we would next spring, when his birthday rolls around. She told me she would like that. Then she said something that again amazed me that this little girl seems to have so much awareness and depth to what has happened. She said, “I miss Johnny…I wish he was here for my birthday.” We talked about it for awhile, how we would have had fun having Johnny at the party, and how Johnny would have enjoyed attending. We talked about where he is, and how he is really happy, and that he is probably having a party every day like what we had done earlier that day for Juliana. Then she asked me if Johnny was her baby brother. I explained that he was, then she said, “Daddy, I would like a baby sister”. This is the first time in a long time, since long before Johnny died, that she has said anything to us about wanting a little brother or sister. We talked about things for awhile longer, before she was asleep.

During the 600 mile trek, Juliana spent most of her time “writing” in a little notebook her Aunt Megan had given her for her birthday, her favorite stuffed animal by her side ("Kitty"). She was a great traveler for us, and we are thankful the trip went so well. This was by far her longest road trip with us. Her writing was meticulous, recording neat little letters or letter-like symbols on page after page of paper, written horizontally along the lines, at times alternating colors for her letter symbols. She started out writing down all the things that we were seeing. She would ask us for ideas, and then return to writing, and then ask again.

Later in the day, she switched to writing “stories, songs, and prayers” as she described it when we asked her about her work. She would sometimes sing along to herself, while she was writing. Sometimes she was quiet, like she was deep in thought as she wrote in her “journal”. When it was finally dark and we were still driving, she closed up the notebook, but wanted it close and by her side.

I now look at the pages and her little symbols, and think about our trip, what she told us she was writing, how she is three years old now, what she told me the night of her birthday party. I think about all we have been through as a family, and the depth of what she seems to understand and the emotion she seems to feel and express. I look at the pages in her notebook, and I can’t read her little symbols and letters as words and sentences. But I am certain there is something in there about Johnny. It was the 24th. For Lea and I, Johnny was often in our thoughts on that long trip. And I have no doubt Juliana was thinking and writing about him, too.

Thursday, November 20, 2008

Seeing what I don't want to become

I was driving in my truck earlier this week, when a familiar song came on the radio. The song was one that was part of Johnny's funeral. I would have thought that it would take me back to a memory of the funeral, but it didn't. Instead, hearing that song instantly brought back a memory with Johnny from way back in May.

It was May 19th. Johnny was in the hospital. He was almost one month old and we hadn't had him home yet. He had made it through his surgeries and was doing quite well but he had a number of lingering things going on that were keeping him from going home. It had not been a good day, some mix-ups at the hospital, appointment and exam scheduling problems, they weren't letting Johnny have food because the doctors were worried about an infection that turned out to be nothing. Later that day Johnny would go in for an MRI to examine his neurological development. It was stressful at the time to think about all the "what if's" the doctors had laid out for us but in the end everything was fine neurologically, but we didn't know it at the time. In order to have the MRI, they had to use anesthesia to keep Johnny still on the table so the whole thing was almost like a surgery as far as the time required and waiting.

It was late in the day, probably after 4 or 5pm and I had just arrived to the surgery waiting area. Unlike any other time, the waiting area was empty. The drab little room had become an all too familiar place. The monitor on the wall had multiple rows of entries showing other kids from the day that had undergone surgery. All rows had the little symbol meaning "recovery room" or "exit" except the line with the birth date 04/20/2008 - Johnny's entry.

I sat down on a chair and opened my laptop, probably to record a blog entry or do some work or email, I can't remember. I had not been there long when a man and a woman walked into the room. They were older then me, probably in their late 40's or early 50's. The woman was walking with a cane and looked to have a disability of some sort with her leg. The man was talking to her. She wasn't saying much. As they took their seats, I couldn't help but over hear the conversation in the quiet of the waiting room.

The man was going on and on about all that had gone wrong that day, the problems with the hospital, the doctors, everything. The woman sat quietly beside him, staring straight ahead. I guessed they were married. The man started to talk about their daughter. I acted like I was continuing to work on my laptop, but I was listening. It sounded like their daughter was older, maybe mid or late teens, and had been in the hospital many times. I couldn't figure out what her diagnosis was, but it sounded like they had been through a long series of medical issues and challenges with their daughter. She was in surgery for something.

The man didn't stop talking. He was negative and discouraging about everything, just going on and on about all of their problems.

A doctor came out to see them. The man was short tempered and unpleasant with the doctors. His wife was quiet and looked visibly embarrassed over how the man was acting. The doctor left and they returned to their seats. The man then gave his wife a long sermon about all the things wrong with doctors, and the hospital. I felt terrible for his wife. Here this woman was, with her child in the hospital going through surgery, and she was with one of the most negative and discouraging people I had observed in a long time.

As I sat there taking all this in, I contemplated our own situation with Johnny. And I realized that as much as I didn't want to admit it, I could turn out just like this man I was watching. The stress of having a child in the hospital, going through so much, trying to balance home life with everything else, trying to maintain your job, witnessing things as a husband and father for your family that are just heartbreaking....it all presses down on you on a daily basis. It looked like this couple had been going through this for years. And at least for the man, it had beaten him down to the point that he didn't seem like he had much if any hope left. His mind and attitude was lost in a world of negative thoughts and bitterness over his situation, and his family was suffering because of it.

I thought back to that scene many times in the coming weeks and months. On more than one occasion, I prayed to God that he would lift and carry the burdens and difficulties for me, and for our family, and protect us from falling into a state of bitterness and lost hope from which we might never recover. In the weeks after Johnny died, there were moments when I really felt like I was at a crossroads. The things that had happened to us could tear us apart, and ruin our lives. I had heard of this happening to other people in similar circumstances. I don't know if you ever reach a point where you can say you have put enough distance between yourself and what has happened that you are "out of the woods" and everybody will be "fine". We are forever changed by what has happened, the key question is what kind of change is it? With each day, by the grace of God, I feel that our family is continuing on a path of healing. There are certainly difficult days and challenges, but I have more reassurance each day that I will not become like that man I observed that day. And for that, I am thankful.

Saturday, October 25, 2008

Images, Sounds, and Life

Yesterday marked two months for us since Johnny died. All day long, the clock prompted me with reminders of how things unfolded for us that day. I wonder sometimes if the 24th will ever be just another day. Lea and I were together at the cemetery, at Johnny's grave site, when the time of his death passed. It was where I wanted to be. Lea had visited the site earlier in the day, so it was the second time there for her. We stood there for awhile. The air was cool. The sun was shining. The leaves in the trees nearby are bright with color. I brushed the fallen leaves away from the faint outline that remains cut in the grass of where the grave is.

In the evening, after we had Juliana asleep and everything was quiet, we watched the video footage we had of Johnny. It was the first time we had watched the video footage since Johnny had died. I had often thought that I had wished I had shot more video. No matter how much we had, I knew it wouldn't seem like enough. I really wasn't even sure what I had. I remembered shooting some scenes, but wasn't completely sure of all the details.

We sat in front of the TV, side by side in the dark, and started the video rolling. And then suddenly there he was, our little Johnny, on the screen. Our first immediate impression was the same...we couldn't believe how great he looked. How full of life, movement, and energy. We have pictures of him that we look at frequently, and he looks good in the pictures, but to hear his sounds again was amazing. The quiet little cooing noises he made when he was happy, and how upset he could get when Lea was giving him a bath. To see those images of him moving around, looking at Juliana and us, reacting to us, just brings home the reality of how stunned I think we were that he didn't make it. He really was in a good place before his surgery. It's still hard to believe sometimes that he didn't pull through it. It's wonderful to look at those video images and hear those sounds, but at the same time it intensifies the loss.

The first scene was not long after he was born, when Juliana met him for the first time. Juliana was on Lea's lap, with Johnny on her lap, Lea's hands carefully holding Johnny from around Juliana. Juliana's beaming face projected all the excitement and wonder that comes with meeting your little brother for the first time. To watch her little hand patting him again, while she was all smiles, brought back a lot of memories of that day and how special that was. Your kids only meet eachother for the first time once.

There is a scene where Johnny is under this huge mobile we bought for him. I remember talking to Lea about getting him a mobile and we basically agreed to get him the best and biggest one she could find. The one she brought home was amazing. It was HUGE with all these moving parts and colors. I used to think it was like Valleyfair (an amusement park near here) for him. He couldn't take more than about 30-45 minutes of it because it would get him so overstimulated that he would get fussy and wouldn't sleep. But when it was going, if he was well rested, he really loved it and would just totally focus on it and watch it closely, going around and around. I've captured it on video. He's totally content and focused on the mobile, making these sweet little noises as it goes around and around. He occasionally does his little smile that was starting to emerge, evidence he is enjoying the moment. He looks just great, all wiggly and happy, cute as only a baby can be, and full of life.

Another scene is of Johnny in his swing, with Juliana sitting in front of him. They were always quite the pair when they were together like that. Jules is reading to him, and patting him on the head. You can tell that Johnny is getting kind of tired, but he is mesmerized by Jules and is enjoying the entertainment. Juliana puts down the books and takes Johnny by the hands and starts singing "Row, row, row your boat, gently down the stream...." while doing little arm motions with Johnny like they are rowing a boat together. It reminded me again how much I miss seeing them together.

We shot some video on my birthday. Jules is helping me with the candles on the cake. Johnny is in the bouncy seat nearby, on the table. Everybody sings happy birthday and I blow out the candles. I open some gifts. I remember being so happy that day. Two wonderful little kids, my birthday, it's summer time, Johnny was doing well, Lea is happy. Lea has the camera. At one point I grab Juliana with one arm, and get my other arm under Johnny. I'm leaning over close to both of them. Juliana is squirming around like toddlers can do when you grab them unexpectedly. In an excited voice I say, "It's my first birthday with two kids!" and I give them both a kiss. I put them down and say, "I am blessed!" It was a wonderful birthday.

Besides these scenes, there are other images, too. The video footage is without a doubt a treasure for us. After watching, we immediately made a back-up copy. Lea is going to find someone that can transfer the footage to a DVD that we will also back-up multiple places. Our plan is to get a fire proof box of some sort or lease a safe deposit box to put everything in: the video, photographs, the DVD of the funeral....all the precious images, the sounds, the sites, the memories. In some ways, it was difficult to see those images, to hear those sounds, and see all the life that Johnny had. It makes the loss all the more real, and the "why" questions resurface again. But at the same time, it helps to see evidence that he really was with us, he really was doing well, and that we all really enjoyed our time with him. He blessed all of us in tremendous ways. He made the most of his four months.

Tuesday, October 21, 2008

Six months

It has been awhile since the last post. Life keeps moving forward for us, and in some ways, there hasn't been that much new to report. We miss Johnny – that hasn’t changed. It’s different day to day. Some days are more difficult than others.

Johnny would have been 6 months old yesterday. We always thought six months would be a significant milestone for us. He would have his two surgeries behind him. It would most likely be a long time before he needed another one. We figured even if his Glenn surgery was difficult, we would for sure have him home by late September or so and have him settled back into a routine and doing well by the time he was 6 months old. When Juliana reached 6 months of age, I remember everything got easier all of a sudden. She started sleeping better, and longer. She was easier to comfort, and seemed more content most of the time. It was a milestone, and we thought we would experience the same thing with Johnny. The six month milestone is here, but Johnny isn’t. We miss him dearly.

I came upon a scrap of paper the other day, it was a torn out sheet from a small spiral notebook I keep in my work briefcase. The piece of paper was buried in a folder with some other documents in my briefcase. There was a list at the top of return calls I needed to make. Five people listed, two crossed off. On the bottom half of the page was the following, written in blue ink pen:

1:30 pm
HR 191
BP 80/40 to 90/50
Oxygen at 62%
SVCP 17

Johnny’s vital signs. I could probably go back and look at my posts updating his condition and figure out exactly when this was. It was about 2 months ago. He was out of surgery, his heart rate was elevated, it was probably the day after surgery, August 20th. I was monitoring how he was doing, hour to hour, and must have made some notes to remember his baseline condition at the time. I was at the hospital with my laptop and briefcase, checking messages, updating the blog, staying close to Johnny to monitor his progress, and hoping and praying he would pull out of it and that his heart rate would drop down to a more normal level, which it eventually did. The next day he was doing much better.

I held that piece of paper, stared at it for a little while, thinking back to those days. Then I dropped it in the recycle waste basket in my office. After about 15 seconds, I stopped what I was doing, thought about what I had done, and picked it back up, reading it over again for a longer time. I couldn’t part with it. It might be the last hand written notes I have of Johnny. I tucked it safely into a file and returned it to my briefcase. And so it goes……suddenly an obscure piece of paper I haven’t seen in weeks has great meaning to me and I can’t throw it away. It’s strange, the thoughts you have and emotions you experience. What we are going through continues to evolve.

Lea is doing okay, although some days and weeks are more difficult than others. The last few weeks have been more emotionally difficult for her then for me. Most days we are at different places with things, but we continue to support each other, give each other space when we need to, and try and offer encouragement to each other. We are both getting along, functioning, caring for Juliana, doing the daily tasks that need to be done. For that we are thankful, as we have heard of people that have struggled to the point of not being able to care for themselves or their children when something like this happens. I can totally understand how this could happen, which makes me more thankful to God for giving us the strength we need to press ahead, despite the difficulty.

Juliana really seems to be doing well. I tell people that most days I think she might be the most well adjusted person in the household. She still talks about Johnny, nearly every day at some point, and we encourage her to continue to do so. She talks about him mostly in a happy way, remembering something about him or stating that she misses him, but saying “we have pictures to help us remember him.” I think it’s still difficult for her to see a little baby. When this happens, she really tunes in to the child and watches closely. And she seems to have some more vivid memories of things when we go to our church, where we had the funeral. She is often more emotional after we come home from church then at any other time. She’s moving forward, just like us. We are so thankful she seems to have adjusted okay to what has happened. I am sure there will be difficult times ahead, but at least for now, she seems to be in a really good place.

I shoot photographs of Juliana every month, within a few days of the 21st (her birthday date), to keep a running photo log of her growth and how she is changing. I don’t have an October photo formatted yet, but I will conclude with a couple of her monthly photos from August and September. She continues to bring us great joy and we are so thankful for her. We appreciate the gift of her life that we have been given more than ever before. It’s difficult to imagine that the pain of going through this could be worse, but I have often thought that it just might be if the child lost was your only child. She keeps us going, she requires us to press ahead for her sake, and she causes much laughter and happiness in our home.
August 2008

September 2008

Thanks so much for the continued thoughts and prayers for us. I am amazed that we continue to receive the occasional note, card, or email offering encouragement and thoughts of hope for us and for our family. People continue to pray for us. We know we are not alone in this. And knowing that helps. Thank you.

Monday, September 29, 2008

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.