Finally . . . an update!!

Below is a letter from Kathy to all:

Well, we just returned from 3 days in Virginia Beach and had a wonderful time as a family making lots of great memories together. Going on a dolphin cruise was one highlight, another was spending the day with our longtime friends the Fortiers who came down from Williamsburg to hang with us. Here are some pictures ....

This was our first road trip since John's inability to walk and while it had its challenges, all in all it went well. We did become very aware that without our 2 very strong sons Gabriel and Joseph along, we could not have done it!! Just moving from wheelchair into bed or bath, to car, etc..has become a test of our physical and at times emotional strength. Some days are better than others, but many days find John feeling weak and unable to perform simple tasks without assistance. We have found several helpful devices to help, such as "grabbers" to pick things up off the floor have been great. While John is so very grateful for the ramp (thank you again Marc Fortier and Joe Mori!) that was installed, (pictures will be posted soon ) it is a rather scary journey every time he does it. The pitch of the ramp is a bit steep due to the small area in which it needed to be built , so he stills prefers to have someone spot him as he does it. Maybe in time it will get easier :)


So many of you have asked how he's doing or progressing and what is most challenging.
The inability or great difficulty to do so many everyday things is probably what is most discouraging for John. He has commented many times that he feels trapped by his body and likens himself to "a turtle living in the world of birds". Just getting ready for his day can require a few hours or more. When we are all going somewhere, like church for example, we need to begin the process well in advance to allow for dressing, bathroom time, getting him down the ramps to the kitchen to our side door, getting the outside ramp set, then from there he rides his power (or manual) wheelchair across our front yard to the car. Getting him from the wheelchair to the car can also be be difficult, depending on the day. It usually requires a minimum of 2 -3 people to assure he gets in properly. Again, we're so grateful for Bill Hennessey who lives with us and is often there to help John get from house to car and back; he's been such a blessing to our family in so many ways.

While this is not an easy journey and one we would not have chosen, we must tell you of the incredible faithfulness of God. Having been priviledged to be in the church for 30 years it should come as no surprise that the unending support, care and love we have been shown is simply amazing! Everything from people being so generous with their finances, sending us pizza every Thursday night (Thank you Paul and Norma) , making it possible for Amanda to go on the youth retreat, (an anonymous donor), rides offered during school, food runs by friends, notes of encouragement, and the many visits of our friends and pastors. Its been so meaningful that so many of you are praying for us!! Thank you, we feel and need your prayers! Every Friday we get a card from our wonderful pastors saying they've prayed for us. Adam Malcolm has visited many times, as well as visits from Mike Bradshaw, Mark Mitchell and Robin Boisvert. What a blessing to be the recipients of such love and care. During the 6 weeks of work where I was not being paid and our insurance was almost discontinued, we were kept afloat by so many of you that were often unaware of our situation yet felt led by the Lord to give us money. These served to increase our faith and bring us such encouragement as we were reminded that God is faithful, even when we struggle with unbelief. He has promised to supply all that we need. For the many men who have come by for visits with Starbucks drinks and other treats just to hang with John, it is so appreciated. He is so grateful for your friendships! We find that we love spending time with our family and friends, now more than ever we covet genuine fellowship as well as the need for laughter. It definately helps to lighten our load!!. Which brings me to my friends; Tracy, Rita, Susan, Terry, Martha, the crazy ladies...Carolyn, Nora and Susan as well as Marcy and Sarah from my work.........., the way you look out for me, care for me, listen to me and support me has been nothing short of amazing! As I sometimes feel stretched beyond measure you are always there for me. THANK YOU!!
We will most likely being seeing an ALS clinic doctor at Johns Hopkins soon to get a "confirmed" diagnosis. This will then allow John to possibly participate in some clincal trials. To be honest, we needed a break from testing, doctors and hospitals, so we took the remainder of the summer off. We'll keep you posted!

As for prayer needs:
That John will continue to seek God and His grace every day when met with new perplexing day challenges.
That Kathy will feel God's encouragement and strength when she faces the challenges of full time work and her desire to be a godly wife and mother.
God's wisdom and guidance for any medical treatments or therapies to pursue.
Daily strength for Gabriel, Joseph, and Amanda as they pursue school and career while dealing with the set of circumstances.