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.
Sunday, November 30, 2008
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.
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.
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.
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