Knocked down , , , again

I have had insomnia for the last two nights. Interesting how after a nice relaxing vacation I can fall apart so easily. This week I have had two very separate, but unsettling incidents happen to me. As much I portray on the outside that life is OK, I have always have refused to live my life in the "victim" role. What goes on "behind the scenes" in our home is what no one sees. Todd and I go to great lengths everyday to make sure that Kourtney's needs are looked after. We have a lot of help in our home but there is not a moment that goes by that the ugliness of this disease stares us in the face.

In the last year I realize how selfish I have become in looking after myself. I don't lead a guilt driven life that I need to be "everything to everyone". Having said that, I am presently walking with a friend down a road that not many people have gone on. Not because I want to play the hero but simply because I have felt the hopelessness and despair that she has had and am willing to encourage her through her journey every step of the way.

I also have learned to embrace people in my life that I know I can trust and they encourage me in every step of my journey. Leanne, Angela, Amy and Jeanne - thanks for being my friends and listening to me and just being there for me and for my special little family.

Now that I have set the stage I will tell you about my week. Kourtney is fine, although moody , sore and tired and feeling the letdown after a nice sunny vacation. The other day I went out for lunch with my friend Angela. She can always say something to me that makes me feel good. She told me that when you see pictures of our family we look like a family that is normal. The bandages become part of Kourtney especially when you see her hanging off the fence at the Grand Canyon. People forget that a trip to Arizona includes tons of nursing hours and nothing but teamwork between Todd and myself. We sent two large boxes of dressing supplies about 3 weeks prior so we didn't have to "lug" 9 days of dressing supplies to the Grand Canyon and through airports. But in our pictures we come across like the typical Canadian family going to the Olympics, and on vacations. I am almost convinced that Angela's words to me were almost prophetic and helped prepare me for the impact that hit me the next day.

I will not go into a lot of detail of what happened to me the next day, but let me tell you I got hit below the belt verbally and was blindsided by someone's comments. I clung to Angela's words when she talked to me. The tears don't come very easily these days but when they come, the floodgates open up. It brought back many feelings of inadequacey, guilt and shame that I really felt I had dealt with but it was obvious by my reaction that there is still a lot I have to deal with. I realized that people who are hurting sometimes hurt other people and blame them for the way they feel. I have been there, but have learned over time that nobody benefits from this.

Then, on top of it all our contract for our caregivers is up for renewal. We negotiated our own private contract 3 years ago which has allowed us to hire Mona, Lorraine and Brittany, and keep them employed with us. It has given us the freedom to go on holidays and also has allowed us to keep Kourtney's much needed appointments at Children's much more manageable and all in all has taken the daily pressure of looking after Kourtney's needs off of us. Unfortunately there is a new set of eyes looking at our contract and much to our total horror it is being questioned. Fortunately, I know I have the right person negotiating our nursing contract for Kourtney but it has accompanied by a lot of sleepless nights, number crunching and having that overwhelming sick feeling in my stomach that I haven't felt during the last year. It doesn't just affect us but also our 3 care givers and their incomes. We will know after April 7th what will happen. We are asking for a lot of prayers and for a miracle to happen. We know that Jesus healed a blind man can he make a "new set of eyes" blind? We are praying this for the committee that Kourtney's case is presented to, that they will see how much this contract has improved our lives as a whole and has added to her wellness.

Thanks to all of you who take the time to read the blog. I am so thankful to all of you that you care enough to read through my ramblings. Believe me it helps me tons to know that there is tons of you out there cheering us on through our continued drama!!