Tomorrow Kourtney is heading back to school.....her nights have been free of choking and her esophagus seems to be cleared of the obstruction without any surgical intervention. We know that she will still require a scope to view the damage done to her esophagus by the blisters.
This week has been tough, we have been really home bound, Shaelyn has been bouncing off the walls, Kourtney has not been going to sleep well, and I have been sleeping with the girls, which has made me feel overwhelmed (I feel a vacation would be nice right about now.) Oh yeah, Todd has been unwell this week.
Despite all this, life goes on. We have been encouraged by meals, (Quirings, MacDonalds and Pauls, thank-you) by Kourtney's grade 2 class which has sent cards, books and toys, Todd's grade 4 class providing a basket of goodies for Kourtney, and for all the encouraging emails saying that people are praying - how cool. For those of you feeling sorry for Shaelyn at the moment she has cashed in greatly on all the generosity. There is no such thing as "mine" in the Kujawa house.
Looking at Kourtney right now sleeping.....I still can't get my head around why God chose Todd and I to parent this child. I feel so helpless in preventing the disease that has done so much damage to her body despite our efforts in maintaining her skin. But what always amazes me is her soft gentle spirit that loves God and loves her friends and family, the child who loves to leave messages on answering machines telling how much she apreciates that person, the child who still runs around Revy with a child size shopping cart even after a fall that she is healing up from. 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.
We are looking forward to Christmas, I have already has started the Kujawa Gauzette, this time written from Shaelyn's perspective.
This week has been tough, we have been really home bound, Shaelyn has been bouncing off the walls, Kourtney has not been going to sleep well, and I have been sleeping with the girls, which has made me feel overwhelmed (I feel a vacation would be nice right about now.) Oh yeah, Todd has been unwell this week.
Despite all this, life goes on. We have been encouraged by meals, (Quirings, MacDonalds and Pauls, thank-you) by Kourtney's grade 2 class which has sent cards, books and toys, Todd's grade 4 class providing a basket of goodies for Kourtney, and for all the encouraging emails saying that people are praying - how cool. For those of you feeling sorry for Shaelyn at the moment she has cashed in greatly on all the generosity. There is no such thing as "mine" in the Kujawa house.
Looking at Kourtney right now sleeping.....I still can't get my head around why God chose Todd and I to parent this child. I feel so helpless in preventing the disease that has done so much damage to her body despite our efforts in maintaining her skin. But what always amazes me is her soft gentle spirit that loves God and loves her friends and family, the child who loves to leave messages on answering machines telling how much she apreciates that person, the child who still runs around Revy with a child size shopping cart even after a fall that she is healing up from. 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.
We are looking forward to Christmas, I have already has started the Kujawa Gauzette, this time written from Shaelyn's perspective.
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