7.19.08

all is going pretty well.

yesterday the family went to seabreeze, a water and amusement park in rochester, ny. we had good weather and good company (met up with another family we are friends with who have kids our kids ages and also my brother was able to join us) and good times. john played as hard as he could and then rested when he needed to. we made a great memory and today he is exhausted.

unfortunately (or fortunately depending on how you look at it) today was the day that we had a backhoe scheduled to come dig the foundation for us to add a downstairs bathroom (we did it to help sell the house faster/better but as it turns out it'd just be nice for john to not have to climb stairs to go to the bathroom). so john, tired as he was, spent the day assisting with that. we had some family show up to help which was so appreciated and helpful, but he had taxed himself so hard yesterday that today was still a bit much. so now he is super tired and the vasculitis seems to be cropping up again (some on the legs after yesterday's escapade and tonight some on the toes).

the plan originally was for us to go camping all next week but when we had a family member offer to sacrafice his full week vacation to help us put the bathroom in, and another offer to give us a few days of his, we realized that we needed the help and so we changed plans. so, next week will be me watching the kids, maybe some time at the pool so they can not be stuck in the house, and john getting some help putting in a bathroom. he will be tired, please pray he continues to listen to his body and his system will be strong.

he's usually execllent at listening to his body and i so admire him for his ability to push, but not past a reasonable point. he's truly working to find balance between living life and creating memories without being in denial about his limitaitons, resting but getting done what needs to be done, and exhibiting independence while still asking for help when he needs it. he's doing a great job. for those who send me snitty annonymous comments about the "consequences" of pushing too hard i say, please don't bother hitting the 'send' button. john is learning to live with chronic illness; please allow him to find his own way without casting judgement. being a spouse to the one with the illness is hard, yes, and you learn to live with it as best as you can. but it's still not nearly as hard as actually being the person living with the illness. until we are the ones forced to find this balance, let's not define how we think someone else should be doing it. thanks.

for those who ask me how to pray specifically, please pray that next week goes smoothly and without incident, and that the physical activity does not take too hard a toll on john. it's the severe fatigue that impacts him the most. there's pain, yes, but it's the lack of endurance and stamina that frustrates him the most. so next week will be challenging.

thanks and with love,
k