The Happiest Place on Earth

Tomorrow morning Kourtney, her friend/caregiver, Marijke and I will be flying to Disneyland. We have been planning this trip for several months as a gift to Kourtney for graduating from high school.  Shaelyn made the decision not to join us as she is now in high school and feels she would be missing too many classes. Todd, well he wasn’t really invited because it is a girls’ trip.

I know I haven’t blogged for a while. These last 3 years since Kourtney’s miraculous recovery have been the best years of her life. She has been so well lately, her pain is under control, her skin heals quickly, and except for a few esophagus issues EB hasn’t thrown us any more curves. It’s not that I am superstitious but it seems when I write about our positive, happy moments on the blog something seems to go sideways.  As an EB mom I have been conditioned to only be “cautiously optimistic”.

I am only sharing this because I have told a handful of people already and it won’t be long until the word spreads. Many of my work friends have been kept in the loop as I can’t hide my emotions too well.  Even with my botox emotions (antidepressants) the tears flow freely.  Tears for which I am thankful as bottled up emotions just make me angry and lash out at people.

For the past year there has been a suspicious growth on Kourtney’s hand. Our family GP had been keeping an eye on it.  I chose not to become too neurotic about it because Kourtney and I tend to shut down when we become worried about something. I wanted Kourtney to get through her high school years. She was enjoying life so much. She left the house at 0830 in the morning and would not return until 530. We were just so happy that she was out there that we didn’t worry too much about the shenanigans that were going on. Kourtney graduated and then we enjoyed one of our best summers ever. Todd and I did most of Kourtney’s care as we looked for new caregivers for the fall. I have to say I loved my time with her. The two man dressing change became 1 one (wo) man dressing change. The once traumatic dressing changes have become tranquil moments with Kourtney. They take a long time to do but I allow time in my schedule and try not to rush through them.

Fall came around and so did her 3 month Dr.’s appointment. After looking at her lesion, Frank (yes we named it), our family GP requested an appointment with Dr. Courtemanche. The appointment was expedited. On the morning of the day we left for Alberta for our annual Thanksgiving trip we made a trip to Vancouver to see Dr. Courtemanche. He was quite concerned about the lesion and wanted it removed ASAP. On the trip to Revelstoke that night I ended up becoming physically ill, as I knew that look on our Dr.’s face.

The family reunion was one of the best ones we had. My family all knew about our appointment however they chose not to get all emotional about it.  We were relieved that my family knew but also relieved that there was so much PEACE that weekend.

After Thanksgiving we returned to Vancouver to have the lesion removed. Team Kourtney  (Breanne, Marijke and Shaelyn) joined us. Dr. Courtemanche was taken aback when he entered the small room in his clinic and there was a group of us squeezed in there  to watch the removal of Frank. But, Dr. Courtemanche realized how important it was for Kourtney to have support there and happily chatted with us.  We were so glad Frank was gone, however the pathology report was going to take a week to get back.

10 days later we got the news. Dr. Courtemanche told us Kourtney had skin cancer. He was on speaker phone, so we all heard it; our hearts were heavy.  According to the reports the margins were unclear, so in layman’s term it meant that he did not get it all with the removal of Frank.  Kourtney will have to go in and get more of it taken out to make sure it’s completely gone. I told him we were going away. He said, “that’s ok we can deal with it when you come back.”  How thankful we were that the news came from him. He has known Kourtney since she was a baby. As difficult as the cancer word is to hear it softened the blow hearing it from such a caring doctor.

Cancer is a big scary word. In Kourtney’s case we are hoping and praying it is localized. We are so thankful she is so healthy and that it’s not making her sick. So many times when we have gone through a crisis, Kourtney has not been able to leave the house for weeks at a time. How ironic that the word cancer would come up when she is so healthy?

We prepared for this moment by going for family counseling. The counselor asked Kourtney how she was feeling. Her reply was, “I know God has big plans for me and HE is not finished with me yet.”  It was so good to hear Kourtney say that. The counselor seemed confused as to why we had come. It appeared that Todd, Shaelyn and I were the ones that were the most worried.  But for me it got us talking about something I have been worried about for quite awhile.

So we wait, but we have decided to live and enjoy Kourtney’s zest for life. There are times when I am overcome with fear and have to have a one to one talk with the big guy upstairs. The only thing that brings me peace is that God in control.

So what can you do? We need lots of prayer. For those who don’t pray, if there is one thing you can do for our family is get to know the God we know. It does not mean that you have to go to church, be a part of a bible study or be without sin. Get to know the God that we know takes care of us no matter who we are or what we have done. He loves us unconditionally. The bible is your reference guide. That’s all we ask for.

By the time you read this though we will have taken off to the happiest place on earth.

Thanks for reading and caring.