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.

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.

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.