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.

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.