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.