Letting Go = Setting Free

Kourtney is still in a vulnerable state with her skin as it has not healed since the events of August 2008. We continue to monitor and swab for infections as we try to dress her wounds the best we can. She is in considerable pain and reminds me of a football player, who after playing a great game, reveals that his ribs are broken and that he took cortisone shots before the game and at half time to make it through. Kourtney is still tougher than this.

Janelle continues to take a "hands off" role with Kourtney's dressing changes, acting as more of an advisor. Her years of experience are invaluable to me as I have learned everything I know from watching her. As unrelenting as Kourtney's EB has been over the years, Janelle has faced the challenge head on and has not shied away from this cruel disease. It has been said by some that she has set her standard of care for Kourtney too high. I think that it just goes to show how deeply she cares and how competent she is.

The day Janelle was admitted to the hospital I called Mona, our caregiver, with the news that she and I would be in charge of Kourtney's bath and dressing change the next morning. As we did the dressing change together we both shared about our sleepless night; laying awake rehearsing how we would dress Kourtney's back, which dressing to use on her knee, which cream to use on her arms, and did we have enough dressings to make it through the rest of the week. At the same moment we felt, deep in our gut, the massive feeling of responsibility Janelle had carried each day. Even as I visited with my parents one evening I felt like I wasn't investing myself in the conversations as I was thinking ahead to next day's dressing change at Children's Hospital. It was not hard for me to see how all consuming this was becoming. I had done my share of dressings over the years and had been Janelle's assistant many times, but I had never understood the magnitude or complexity of caring for Kourtney. I can see how Janelle, the nurse, has had no time or energy to be Janelle, the mom.

If there is an opposite to "letting go", it must be "holding on". We had been holding on to Kourtney's care so tightly over the years that it had become a part of us. We couldn't make a decision without running it through the filter of how it would affect Kourtney: family vacations, trips to the park, going to the mall, birthday parties. Everywhere we went we would have to take into account her special needs for toileting, medications, , G-tube feeds, climate control, seating, physical safety, and on and on. Believe me, going to the lake for an afternoon is not as simple as it sounds. This was our life, holding on, because it kept Kourtney safe and it worked. But the truth was we were basically slaves to Kourtney's care. I know it sounds kind of harsh but it was something we couldn't get away from and it wore us down.

So, on with the letting go. Janelle physically let go by checking in to the hospital after Christmas. Janelle and I both let go by taking off to Mexico for a week. Kourtney has let go by allowing others to take over the dressing changes. Caregivers, doctors and nurses at Children's Hospital, friends from church, and family have all stepped in to carry the weight we had been carrying for so long. We are also looking at bringing one or two more caregivers into the home to help us out. By letting go, all of us have been set free. Janelle is free to be a mother and wife. She can go out with friends knowing that there are others in place who can make those tough decisions. I can be the husband and dad I should be. I feel free to go out with the guys knowing that I'm not unloading my responsibilities on Janelle. Kourtney is free to spend time with friends without a parent or caregiver being with present at all times. Each of us has been set free to be who we are meant to be and as a result are more able to meet each other's needs. And then there's Shaelyn . . .

This afternoon, Shaelyn and I took the Skytrain into Vancouver to watch the Canucks "super skills" event. We're not big hockey fans but we enjoyed the fun atmosphere and Shaelyn especially liked watching the huge Orca Blimp circle the building. After a quick stop at Metrotown to pick up a new Build a Bear (how could i say, "no?") we headed back home and called it a good day. All of this has been tough on Shaelyn, but we are so thankful for her beautiful spirit. She loves her teacher at school, is fascinated by all living creatures, and has a special bond with Kourtney. One minute she is writing Kourtney an encouraging note, the next she is tickling her and trying to tip her chair over. She is enjoying more quality time with her mom now that Janelle is not as involved with Kourtney's dressings.