Take My Voice and let me squeak.?.

click HERE for video

When Kourtney was born, the song "Take my Life and Let it Be" became her song. For those of you who don't know, the song goes through the different parts of the body acknowledging that we are created by God and that every part of our bodies can be used for honoring God. It seemed like every part of the body mentioned in the song was blistered on Kourtney when she was born. Hands, feet, body the only thing that wasn't affected was her voice. Kourtney had a very piercing cry. I remember praying and asking God to preserve Kourtney's voice so that she could sing and speak. As many of you know Kourtney has a powerful singing voice and has been articulate ever since she was very small.

This last week the tension in our family has been rising. The stress we have been feeling with the "new upcoming contract" is starting to tear us all apart. The other day I got a phone call from a man from the Ministry of Children and Familes. He could not figure out our contract. So here I am on the phone after school, Kourtney was wanting a snack, Shaelyn needed her hair in pony tails for skipping, the dog wanted out and I am trying to describe 12 years of Kourtney's nursing history to someone who was very pleasantly confused in a bureaucratic way. My anger was intensified as I was on the phone and then I stepped on the dog harness that was left in the middle of the floor. I am not sure what came out of my mouth but I knew that I had to ask forgiveness very quickly to my family. I was reminded why I don't like talking on the phone and why I love email.

Then, on top of it all Kourtney managed to lose her voice Tuesday morning. The kicker of this is that she made it to the final round of her speeches and was supposed to say it Wednesday.

As I am feeling frustrated I also knew in the back of my mind that Kourtney's hemoglobin may be dropping again. We have had a sabbatical from the lengthy iron infusions at Children's for the last 2 months. We have been trialling oral iron to see if her body will absorb it. Kourtney has no side effects from the iron but I am suspecting it is not helping her (just a hunch - I hope I am hunching wrong about this one). I knew we had to get blood work done in Abbotsford sooner than later so that if her hemoglobin has dropped we could recover it by getting an iron infusion. So I had to break the news to Kourtney that she needed her blood work done. This sent Kourtney into a fury and whatever voice was left was now completely gone after she threw her fit. I was completely frustrated as I heard nothing but squeaks come out of her voice and became completely full of self pity and threw my hands up saying, "Whatever God, I can't do this you need to take this one because I can not deal with all this."

So we got to the lab and I literally had to drag Kourtney into there. As I was standing there waiting in the crowded waiting room,I saw a technician I knew from a long time ago. I worked with her at Menno Hospital and had run into her at the hospital a few time since working there. I called her over and asked if she could do Kourtney's blood work. She was more than happy and Kourtney settled down when she knew that the technician was somebody that I trusted. I knew it was a God moment when I asked her how long she had been working in this particular lab. Her response, " I don't work here, they just needed me here today," actually I said, "we needed you here today!"

This morning there were numerous tears as Kourtney tried to talk and just squeaks came out. She was convinced that she couldn't do her speech, but Todd and I both told her that her voice may get better by the afternoon. I went to the school for lunch and sat with Kourtney. She cried and was debating if she was going to do her speech. Proud Dad, Todd, came to watch Kourtney do her speech and reminded her that God provided the right lab technician to be at the lab that day, God can give her voice back. Then Tammy (Kourtney's TA) had a pep talk with her as well as her teacher. Tammy requested that Todd and I not say anything more because our presence was making her more upset (there were no other parents in attendance yep we were just a little proud).

After the 3rd person went for their speech it was increasingly obvious that Kourtney was becoming more nervous. So they changed the line up and had Kourtney do her speech. Kourtney walked up and said her speech with no squeaks! She was articulate and confident in front of her peers (to see her speech, click HERE. This one was the semifinals, we will post the finals when we have time to do it.) Kourtney then got the phone call that she made it to the district finals- way to go Kourtney!!!

OK! Lesson learned once again, but why is it that we have to hang off the cliff so many times to wait for an answer, is it my lack of faith? I don't know but whatever it is I am reminded once again that I have no control - I just need to be faithful. We are waiting for the blood work results and hoping for good results. If not, we will just have to suck it up and take our trips into Children's for more iron infusions. We will keep you informed.

I slept!

It felt so great to wake up this morning and feel refreshed from a good sleep. This weekend we had an amazing time with people! Big people, little people and preteen people. Work was very busy but we worked with an amazing team of nurses and pulled through the night. I really do love my job. I have met so many amazing friends there, it is my social outlet. I am currently a preceptor to a BCIT student. She is an RN already but she is specializing in Maternity nursing. It has been so rewarding for me to watch her learn and experience many new things. It hit me that I have 18 years nursing experience to share with her, and I am also 18 years older than her. I love the fact that I can take life experience and work experience and help mentor a younger nurse.

There is still that sick lingering feeling as our family gears up for the changes in our nursing contract. But I have been thankfully reminded that God is bigger than all these issues, He is in charge and for that I can sleep easy.

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!!

New York Times & EB Research

This is an article from Sunday's New York Times. It explains the latest news with regards to research being done in search of a cure for EB.

Click here for the article.

Arizona-thanks for the memories!!

This is a picture of Todd with his two very beautiful cousins Kourtney and Natalie from Tuscon Arizona.
We just came back from our holidays-first of all we were spoiled rotten. We saw, and did sooo much. We will go into more detail but we just wanted to let you know that we are home safe and sound and have left our hearts in Arizona with The Kujawa family!! The blog will return soon!!

What I learned from my 30 days.

Now that my challenge is over I need to take a few seconds and reflect on how it has changed me. I have so much to do before I leave tomorrow for Arizona but I had to take the whirling thoughts in my head and put them "on paper" before I start into the business of the day.

The success of my 30 day challenge is not about putting my forehead to my knee or touching my head to my toes. The true success has been about commitment. I know I have inspired my own child that you can do anything that you can set your mind to it, no matter how much it hurts and how tired you are. I hope I have inspired other people to live life to the fullest, be true to yourself and look after yourself.

I realize that not everyone can be committed to doing yoga for 30 days, but a 30 day challenge can be about 30 day commitment to 15 minutes of reading, flossing your teeth, waking up 10 minutes earlier, scheduling your day better, and list goes on. All I know is that when the physical aspect of the body is working well, life seems to be a lot better for me.

The most important aspect that I want to share about is my faith in God. I really don't know where I would be if I didn't have my faith and have God in the centre of my life. If I didn't believe in a God that was sovereign (all knowing), I wouldn't be where I am today. I don't think I could ever accept Kourtney's suffering if I didn't believe that Kourtney was created in God's image. I know that God has never left me even when I felt the most despair in my life, it was only I wasn't allowing to give Him the control. Once I took the control out of my hands and fell flat on my face and ended up in the hospital, I was able to process Kourtney's suffering much better. I live every day to the fullest and don't fear what is behind me or in front of me, because I know God is good and he is watching over me!! What a safe place to be.

The other day I received a "verbal badge of honour" from someone that has followed our story from the day Kourtney was born. As much as I wanted to take the credit for all the kind words, I couldn't because I know that it has been my faith that has put me in the place where I am today. I came home crying. Todd thought, "Oh boy she has gotten in trouble at work again," but I sobbed as I told him how overwhelming it was that we have have been entrusted with such a fragile child and how God has used her life to bring Glory to Him.

For those of you who are trying to do it all, or those who can't make sense out of life, take time to start getting to know God and the promises that are available to you. Don't let your preconceived ideas about being a Christian get in your way of knowing Christ. Really you have nothing to lose but everything to gain. You can do anything through Christ who gives your strength. That is my moto and I am sticking to it!!

Countdown Ends!!

I DID IT!! 30 yogas in 30 days, and I feel great. Had a Coke zero today...thought it was rather disgusting, but shopping is not at all. Thanks for your support....leaving for Arizona. Stay tuned when we return. My countdown to 40 will continue!