Monday, January 12, 2009

She's back . . .

Yesterday (Sunday), I heard something that was music to my ears. Doors slamming, things falling on the floor, and two little girls aruging about their territory. Kourtney decided she wanted to have her own room back after sharing with Shaelyn for a few months. Shaelyn thought that Kourtney's moving out was a great idea, so the big move began. Much to my dismay, Shaelyn decided to mark her territory by placing a sign on her door, "no 11 year old girls allowed." Kourtney retaliated by making her sign, "no stinky7 year olds allowed." I haven't seen this kind of behaviour in so long, that is really was music to my ears (a screechy violin kind of music). I haven't seen Kourtney so spunky and full of life for a long time.

Today was the "best day of my life" according to Kourtney. It was her first day attending her middle school in Abbotsford with her friends. Last June we were told by the principal and support teacher at this middle school that Kourtney should not attend the school. Construction at the school had shut down too many rooms , there were no bathroom facilities for her, and the concrete dust was overwhelming. The school district could not come up with a workable plan for Kourtney despite our efforts to keep Kourtney in Abbotsford. During the last week of June, Todd made the decision to enroll her in the Cyberschool program at his school in Maple Ridge. This devastated Kourtney and myself as Kourtney had just come off her best school year ever. We worked very hard to have the right people in place for her, and it was a very successful grade 5 year. To have that all stripped away was very difficult for all of us to accept, especially Kourtney. She had so many special friends at that school and they knew the real funny, vivacious Kourtney, not the crippled Kourtney (as she describes it).

In November, we were told that the construction at the middle school was ahead of schedule and would be over in January 2009. We started the process of getting Kourtney back into her middle school, but felt overwhelmed with the looming struggle to get the services she had in place last year. I had no energy to fight this so Todd and I both resigned ourselves to the fact that the best thing to do was to leave Kourtney in the Cyberschool. But, over Christmas the despair Kourtney had was unbearable to watch as a mom. She got stood up by a friend, and overheard too many phone conversations with my family members. She said she had nothing to live for anymore. Todd ended up calling a school board trustee, whom we happened to talk to at church in the fall. She got the ball rolling for us. Todd had a meeting last Thursday . . . and Kourtney started back to her middle school today. Tammy, her teacher's aide from last year was once again assigned to Kourtney, even though some union rules had to be bent.

There was nothing better then walking into the school at lunch time and seeing Kourtney in her recliner chair with 10 friends sitting around and talking with her. Kourtney described today as the best day of her life. Tonight she is headed to youth group with a friend from church. She will have her electric wheelchair with her so that she can keep up with the kids. Our next project when we get back form our holiday will be getting a wheelchair accessible van.

Although her skin continues to be a huge issue, Todd is feeling confident in his dressing skills and in looking after her. Mona also has a good handle on Kourtney's skin and plays a huge roll in helping Kourtney. Todd and I have totally switched rolls. I am now free to spend more time with Shaelyn, and to just be Kourtney's mom. We are looking forward to our getaway. We have never been away together alone. It will be so different for us to make the physcial break from Kourtney. Knowing that she is happier now with her school will give her a reason to continue to fight this disease, and having Todd and I rested and relaxed as a couple will definetely help us in the next months as we continue to face this disease with courage, and not to be held hostage to it as we have for so many years.

7 comments:

Coco said...

I am thrilled to hear that Kourtney has her spunk back! :) I am also very excited for you and Todd as you plan your second honeymoon. I see God's hand in all of this and am so very encouraged. Thanks for your honesty. I love and admire you greatly! More than ever!!!

Ellie said...

I'm so glad to hear that Kourtney had a wonderful welcome back to school. Having a group of friends close by to support her will be a big help to her healing both physically and mentally.

Anonymous said...

Great stuff janelle! Sounds like things are getting back on track; so pleased to hear you are taking a break from dressing changes. Still thinking of you all and praying. This blog is a great way of keeping everyone up to date! Sheila

John and Kim Fleming said...

So glad to hear that things are looking up. Your family will continue to be in our prayers and I pray that you enjoy the sun in Mexico!!!! Kim

JMV Healthcare Garage said...

Thank you for your honesty and sharing your struggles. We will continue to pray for your family. We wish you a fun & relaxing holiday!
marci et al

Anonymous said...

Glad to hear things are looking up. Enjoy your time away!

Sherry Knoppers

Anonymous said...

This is a blog you posted Nov.2004 "If you want to pray for us specifically pray that Todd and I will never ever hinder that spirit by being so overwhelmed by her disease. Pray that we will be able to focus in on the little girl not on the EB. Kourtney has touched so many lives and will continue to do so and I pray for strength and energy to carry on as we continue on."

May your new routine and your trip to Mexico be an answer to that prayer. Kourtney's life has made such an impact on many. I will pray for your refreshment, focus, strength and energy in 2009.

Que les vaya bien!
Kelly