One of the biggest struggles I have had is dealing with the isolation that comes with parenting a medically fragile child. On one hand there is the literal isolation that naturally happens because it is so difficult (if not impossible) to go anywhere. Daniel is on a very regimented schedule-- he gets meds and feeds at specific times. If he's not eating or sleeping, then he's getting meds, so we usually don't go anywhere.
On the other hand there is the emotional and mental isolation. It is so difficult to be around people with only heart healthy children. The things they worry about seem so insignificant and silly. For example, I was talking to a friend recently, and she was really worried about giving her baby a dose of Benadryl to help with his runny nose. I smiled and nodded, all while thinking, "Come on! My baby was on FENTANYL for 3 months, and you're worried about Benadryl???" It can be so easy to withdraw from friends and family because they just don't get it.
Tell me about your baby's schedule. Can you relate to feeling both physically and emotionally isolated? Have you found yourself withdrawing? How are you coping?
