Hope, Healing, Holding Us Up

Thank you to those of you who read these blogs. We do not take your time in reading them for granted and try to keep them short. I (Joan) am going to work my title backwards.

HOLDING US UP: We are dealing with some immense issues, but this one thing I know: we have an incredible God. He and His body are holding us together. Lenten season has us focused on Christ’s suffering and knowing we walk a path of suffering now reminds us too of the Hope of heaven and glorified bodies that our coming because Christ conquered death. You, the body of Christ, are hugging us tightly through your prayers, care, food, and support. Bless You!

HEALING:  Seventeen days until Matthew’s surgery. We have begun the conversation with him, and he wants his seizures to go away. He knows that there are people on “Matthew’s team” and that they are praying for him. We have not yet disclosed how the doctor will get rid of the seizures, nor the long hospital stay. With the help of a CHOP video and book we will introduce him to an outline of those a week before. Ron and I are trusting God that this path is one of healing for Matthew. We must get past the “yuck” part before the path becomes a pleasant one.

My mom continuous to feel the affect of a body wasting away, and she is fighting to keep her inner self renewed. Of course, her ultimate healing will come and we both try to keep our eyes focused on that as we minister to her each day and night, trying our best to keep her at her best. The timing of her slow decrease in health, I leave in God’s hands.

HOPE: Much to juggle getting everything ready for Matthew’s surgery: training Ron and hospice personnel in mom’s care, thinking through all it means for mommy to be away from Kari, thinking through medical appointments, etc. But during all this a gift has been given us. After 34 years, we finally got the underlying diagnosis – the cause of our first two children’s severe disabilities. We now call Kari, ‘rare bird’ instead of ‘Kare-bear.” I will not go into details. Suffice it to say our children are the only ones our geneticist knows of here in America that carry the mutation on a particular gene in the nuclear DNA of the mitochondria.  All other 20 children live elsewhere in the world. Kari is the oldest. This is frontier medicine at the cutting edge with an amazing search that has brought us to this point. Researchers and geneticists that we have been in contact with regarding this are amazed that Kari still lives! Most have died in toddlerhood.  Any treatment of her condition if discovered would probably already be too late to help Kari, but if in five years we could see babies being treated with a gene therapy and if they could be prevented the kind of life our children have endured, we would be so blessed. One recommendation is to have Kari go back on the ketogenic diet and we do have some hope of seizures abating through this. A few days ago we were blown away to have a world-renowned mitochondria expert call us on the phone, expressing encouragement and praise for what we have done for our daughter. And he gave us some helpful insights, recommendations and leads. That very bright spot in our week is only outshined by our Heavenly Father reminding us that full healing is coming! In him is all the hope and to him belongs all the glory!