We thought it might be time for a short update. Henryk has made it clear that his body is declining, seemingly simply due to his condition, not any decision path we did or did not take. He is not eating anymore, by nursing or bottle, he cannot close his eyes anymore, he is quite stiff, and he has regular apnea episodes. Moving him is very hard on him so we have made our post on the couch. The two of us take turns holding him around the clock, with me taking the majority of the day while Michael works, Michael taking evenings, and each of us a few hours at a time at night. We started him on IV pain meds through his PICC line which has been incredible in keeping him comfortable.
It is an honor to care for him. To do everything we can for him is a high calling, and we appreciate the gift of the opportunity to do it to the best of our ability. We have not left the house or slept in bed in days and we do not care. We are soaking up the chance to spend time as a family and it is a blessing.
Much of the time we are able to remember the truth. We are able to remember all of you who have said you are praying for us. It is like a shield of protection is around this house boarding a slowly passing boy. It is sad to behold but even for this there is grace. God does not put you on a path like this and then leave you.