A New Kind of Normal

Wow! I can't begin to describe how wonderful and refreshing our trip to Mexico was. It was the first time since our honeymoon (more than 12 years ago) that Janelle and I had ever been away together. We're already looking forward to our next vacation. Take a look at our photo album section for a few pictures.

We knew our vacation was finished when we found ourselves spending nearly and hour in an airport parking lot trying to use a borrowed lighter to heat up a key to unlock a frozen car door only to find out that the battery was dead. On the second separate attempt to jump start the car its alarm went off before finally starting. I then had to scrape the ice off the inside of the car windows as they were covered in a thick layer of frost. Home at last by 0545.

While we were gone we knew that the girls would be well taken care of, and they were. By about the fifth night Janelle and I concluded that the girls were probably having just as much fun as we were. My mom acted as the events coordinator, inviting friends over to play games and eat meals, even arranging field trips and play dates. Our caregivers did a fantastic job looking after Kourtney. We were proud of Kourtney for taking ownership in her care as she helped direct those who were caring for her.

For the past few months, the winds of change had been swirling around each of our lives. For Janelle, she knew she was reaching her breaking point after years of shouldering the responsibility for Kourtney's care. She knew something had to change, something big! She told me over and over again that she couldn't keep going; she was done, finished. She wanted to walk away from the decisions, the responsibility, the pain of watching Kourtney suffer knowing there was nothing more she could do. At the same time I was not content with who I was. I felt like a shell of a man; solid on the outside, but hollow on the inside. I knew I wasn't being the dad or husband God wanted me to be and was frustrated that I couldn't seem to get my act together. From the outside I looked like I had my life together, but on the inside I was a mess. The winds continued to gain speed and eventually built into the "perfect storm" over the Christmas break.

While it may have looked like our family was being torn apart and blown away by the storm, the view from the inside was quite different. While the storm raged on we were gracefully supported by many God-ordained appointments. Significant people emerged on the scene providing encouragement and insight at the exact moment we needed. Timely phone conversations with a pastor, a special nurse looking after Janelle, the hand-picked social worker who really understood our situation all reaffirmed that we were being carried in the hands of God. My life has taken on a whole new purpose and passion in the past month and for the first time feel prepared to lead my family. Exciting times are ahead!

Kourtney, Janelle and I spend the past 13 hours at Children's hospital as Kourtney had some more blood work done and received another dose of IV iron. We didn't get home until after 2000. Janelle was encouraged that Kourtney's hemoglobin count is higher than it has been in months and we are beginning to notice an improvement in her skin. We have seen her skin improve like this before only to have another infection take over and set us back to square one. Kourtney is off antibiotics now and we pray that the infections stay away. For each of the last two weeks, Kourtney has attended two or three days of school with the other days spent at Children's Hospital. She is now looking forward to spending the next month going to school full time as we try to manage her care at home. Since August we have put on over 2,500 kms on our vehicles traveling to Children's Hospital.

Shaelyn continues to enjoy life by playing with our adopted cat, Zazu, even after he ate the fish out of her fish bowl. She had a good snowball fight with the neighbor kids yesterday and has emerged as a confident banker in her Monopoly games with Grandma and Co. When we returned from our vacation, Janelle hopped into bed with Shaelyn. When Shaelyn woke up she looked at Janelle and said, half asleep, "Grandma, you don't have wrinkles any more." before realizing Grandma wasn't there any more.

Janelle is enjoying taking a hands off approach to Kourtney's care although Kourtney has rebuked Janelle for looking at her "like a nurse". Janelle went back for an orientation shift at work and is planning to make a gradual return to work over the next few weeks. Life is slowly returning to normal, a new kind of normal, and it feels good.