Self Talk

Over the years I have learned to do what I call self talk. (not to be confused with talking to yourself). I believe that this has become a coping mechanism of sorts to get me through my depressing times. For example, after we booked our trip to Hawaii I was really kicking myself that we had not booked our trip for 10 days instead of 8. I was hoping that 8 days would be enough and that we would be rested enough after our time there. Especially if you could see what we need to take with us for Kourtney. We met some acquaintances in Hawaii on our first night and they were planning on staying 2 weeks. Shoot! I wished we were staying longer. But as the time drew near the end I was able to convince myself that 8 days were perfect and we were ready to take our sunburnt and sand filled bodies and go home. I enjoyed the 8 days but convinced myself that it was adequate. We saw our acquaintances on our very last night there and they still had another week left and really there was little or no twinges of jealously left in my body. Over the week I was able to have enough conversations in my head that I was at Peace with it! But then when we came home to the rain and those feelings of "I don't even feel like I left" started entering my head and once again my little self talk began in my head.

As the old saying goes "the grass is always greener on the other side". Through my self talk I have learned to add to it greener but it probably doesn't smell quite as good because nobody sees the manure that went into getting it that way. I struggle regularly with not being able to do "normal family" things but then I am reminded that our trips to Florida, Arizona, and Hawaii are extraordinary and somehow there is a provision made annually for us to do this. I still find it difficult watching people's reactions when they see Kourtney's dressings and hands but I rejoice when Kourtney's You Tube video is so popular that they want to put advertisements on her video. I mourn when I see teenagers developing normally, but know that her disease also stops her from getting her into teenage trouble. I am envious of the people with big houses and view lots but reminded that a swimming pool can't be put in a view - I am so thankful for our yard.

This is the mindset that has gotten me through and almost daily I have to remind myself that really our lives are great. Yes, Kourtney has a cruel skin disease but that cannot stop us from living and living well. It is pure freedom to be able to "look on the bright side" and for me I don't think I have to look very far because it is sitting right here in front of me!!

So having said all of that we have plenty of things to look forward to in the months to come (skipping tournament in Nelson, weddings, a weekend getaway with Todd and I, specialist appointments, etc.) I don't dread it I have learned to embrace a busy and full life.

Aloha!!

I am sitting here in our hotel room at 6 am. Todd, Shaelyn and Bev are going snorkeling so I was up and about getting them ready. I can't fall back to sleep so I decided that I will do my most favourite thing in the world and get my thoughts out!!

So this trip has been monumental as most of our trip are but this one has been amazingly relaxing for us! We really haven't done any extracurricular activities except beach, pool and a wee little bit of shopping! But we really haven't had to as we are all very happy relaxing on the beach. I feel like the girls have "grown up" so much since our last trip here 3 years ago that we don't have to plan a lot of things to do.

Kourtney has done extremely well this week. She is such a great traveler and the jet lag doesn't seem to affect her. The ocean water has been miraculous for her skin. Her sores heal up so quickly. During this trip I have watched her transform from a depressed teenager to a relaxed, happy, witty teenager - that is my Kourtney. The daily dressing changes are going extremely well and if you notice in the picture she is starting to even stand straight. We have worked very hard on this; it is so nice to see the results. The last time we were here was probably the first time I started seeing her depressed (sitting for hours not saying anything) now she is chatty and very happy.

Shaelyn, our amphibious child, continues to amaze us with her love of water. However, on our second day at the beach she got too much sun and despite a 30 and 60 sunscreen burnt her shoulders to the point of blistering. She is now reaping the results and has a lot of flaky skin to shed. After that day it turned her off the sun and the beach for 2 days, but now she is full steam ahead. Unfortunately her underwater camera wasn't working after her first swim. She was so looking forward to taking pictures today!!

Todd and I are enjoying ourselves immensely. During my morning runs I have literally run into random people (one of our former nurses and Shaelyn's teacher). We have seen people from our church and then just people we seem to know. Todd seems to be able to steal a nap every time he lays down and enjoys going for long swims with his yellow snorkel set!

So for those thinking in your minds "it must be nice", how can they afford this trip? I need to remind you that for us to be able to go on tropical vacations is absolutely and completely necessary for our family. We almost can't afford not to make this a priority in order for us to break the redundancy with an above average stressful environment at home. Hawaii and other vacations become our happy place especially when the going gets rough at home.

As Shaelyn said it so well, I am looking forward to going home to see the dog and cat, but when I see them I will miss the Hawaii sunshine and the water. That would translate into I have had a great time but ok with going home. The girls miss Lexi very much and are excited about getting their faces licked when they get home!!

Most Embarassing Moment EVER

So, yesterday I had a surveillance colonoscopy done. It was all clear and I recovered from it quickly. Unfortunately due to the sedatives that I was given I felt I was a bit unsafe to drive into Vancouver the next day (Tuesday) for Kourtney's iron infusion. Vanessa kindly obliged to come into town with us so we left at 725 in the morning. It took 2 hours to get into town and much to my dismay the regular nurses were not around who put Kourtney's IV in. So we had to wait 2 hours for an IV nurse. A part of me thought that I should just start it myself but I could not bring myself to do it.

Kourtney was supposed to see the physio during her iron infusion and of course she showed up the same time the IV team came. GONG SHOW!! Kourtney remains on strict isolation so the IV team were gowning  gloving and masking. Yes, I did say team. We had two experienced nurses for the price of one!! I am not sure why the duo but I began feeling this was going to end up in disaster.

The short story is after the 3rd poke I finally stepped in did it myself. These other two apparently could not hit the broad side of a barn. To tell you the truth they are soooo sweet but I think they were just so nervous about hurting Kourtney that they totally overcompensated.

So after all that we settled into a funny movie and enjoyed it. Unfortunately the nurse forgot to call the Doctor to tell him we were there as I had to talk to him about a medication for Kourtney. Near the end of the infusion I reminded the nurse again and she said it would take 20 minutes for him to see us (more waiting). As the clock continued to tick away Kourtney had to go to the bathroom. I asked if she could wait (stupid question because when Kourtney has to go she has to go). So we maneuvered her and the IV to the bathroom and my words were, "Watch as soon as I get her on the toilet Dr. Davis will come in." Sure enough,  I just shut the door to the adjoining bathroom and Vanessa giggled and said, "You were right Janelle." So I got Kourtney settled on the toilet and greeted Dr. Davis and his resident. I was standing by the bathroom door as we began our conversation but I could not hear what saying as the sound coming from the bathroom was filling my ears.  It sounded like a coffee purcolator. Apparently I was the only one who heard it and began laughing uncontrollably. Unfortunately nobody else joined in my laughter. I  heard someone say that sorrow and laughter are closely related  and when you throw in the sedative from my colonoscopy hysteria ensues!! As the tears were pouring down my face and I was holding my sides, the conversation continued but I could not answer due to my hysterics. Vanessa pointed out to the Dr that it must of been the medication from the colonoscopy that caused this reaction. He left to write a prescription and the little coffee coffee purculator continued to make her little noises. She held it all in while he was in the room!
He came back in and I was much more composed although I felt really stupid we were able to talk about colonoscopies and I pray that I recovered my composure . Embarassing but I think humour sometimes is needed especially in situations like this!!