We have enjoyed a rich time as a family over Christmas and thanks to Dave Wilcox the sound guy at our church, we were given a DVD of the Christmas Eve service. ( Thank you Justin Cowan for delivering it ) and had a peaceful morning opening gifts and having a delicious breakfast....thank you Susan for the Cinnamon rolls! Now that Christmas is over I have a moment to give you an update on John and life in our household.
I will try to fill you in on the past 3 weeks....... 2 weeks ago was a really rough one for all of us. John's was struggling with his breathing and specifically had a hard time getting his lungs cleared out. There were many very late nights on the phone with hospice......until after their continued encouragement, John finally agreed to take an anti-anxiety drug to calm him down before these episodes begin, and morphine which helps to open up his lungs and improve his breathing. After one of these particularly bad nights , I had a mini meltdown and called Charlene Vigil , a friend and nurse who is part of our church. Many months ago she had offered to provide nursing assistance during the nights so Amanda and I could get some sleep. After holding off for many months from taking her up on her offer, I was now ready for help. That night she came over and was here till the early morning hours assisting us with Chest PT's and suction machines, giving us some much needed rest. She came the next night and did the same thing. I felt like the calvalry had arrived to us war torn soldiers. Since Charlene has begun coming she has now assembled a group of gifted and amazing servants who are nurses and who have kindly offered to help us each night with John's care. We are so grateful that you would do this for our family. Words are inadequate to express our heart felt thanks.
While John is more comfortable now that he is using the drugs to help him with the symtoms, he is also using the oxygen more each day and sleeping more each day. This is what we expected and what will happen as he is able to get less oxygen in his lungs. When he's fully awake and rested...he is still very alert and very much John! His mornings are the best, by nighttime he is much more tired and less conversive. We are so grateful he is not as stressed with his breathing and we have more time to talk and enjoy each other.
While we continue to enjoy precious times together and though we have stopped having visitors, our dear friend and pastor Adam Malcolm continues to visit John and is now reading to him from the book Heaven by Randy Alcorn. A book that is helping to prepare my wonderful husband even more for the moment he will see his Savior face to face and behold His glory. We do not know how much longer John will be with us but we would want you to know that we are all doing well in our souls, filled with God's amazing grace, and so very grateful for the time we have had. ALS has often been referred to as the long goodbye. We have grieved much along the way as John was faced with one loss after another. So many milestones have marked our journey. Not being able to drive anymore, not being able to play his beloved guitar anymore, not being able to stand, or being able to hug each of us, not being able to feed himself........the list goes on and on. There have been many tears, as we each had to face the reality of our new normal. But through it all we felt sustained by grace and given strength we know was not our own.
Lastly, you our friends have made this journey so much lighter through your constant and loving care for our family. You have brought us meals , cleaned our house, sent notes of encouragement, gifts of money to help out while I’ve taken Family Medical Leave from work, brought church to Johnny so he could experience corporate worship, those men who would come regularly to visit with John, giving us time to run errands, Christmas dinners fit for a king, youth groups who cleaned our garage and chipped in their own money to buy us a refrigerator for extra meals, The list goes on and on..............
Romans 8:28 says that for those who love God....he works all things together for good, for those who are called according to his purpose.
By God’s grace we felt very early on that we were called to trust Him and that all suffering brings with it an opportunity to display his work in our lives. We pray that in some small way God has become greater to each of you through our trial, that you would not fear the future and know that God allows all these things for our good and for his glory.
