Extended family and other support
Some parents have extended family and friends they can depend on. Other parents have less support.
You can listen to two different family experiences below.
Marta: All of our relatives understand that life is different now, and they are okay with that. We hardly ever get together with family, because we don’t want to risk Miguel getting a cold or infection or anything. This is one of the hardest things about Miguel being on a trach and vent. Sometimes we meet up with our cousins for soccer but it takes a huge effort to prepare for an outing like that. And we worry that we’d be risking Miguel’s health by having him around so many people and germs.
Tomas: Yeah, we haven’t been able to travel to Mexico to see family, which is really hard on all of us. And Marta is the one home with the kids almost all the time. It’s depressing when you feel confined like that.
Marta: Even little things like I can’t get to the store because that’s a huge deal. Sammy can’t have his friends over, either, because you know kids carry around all sorts of germs – if Miguel catches something, that will mean a trip back to the hospital for us – and it becomes even harder for the family when we’re split up.
Tomas: We are willing to do whatever it takes to have Miguel home with us. That’s our number one priority right now.
Marta: Yes, even with the tough parts of this, I wouldn’t want things any other way.
John: There really isn’t anyone else I can depend on to help me out. My parents live across the country. They came and met Ruby a couple of times in the hospital. They actually wanted me to take her home, to try the trach and vent, but really my parents couldn’t have much say, since they live so far away and were not going to help out if we did come home with all that equipment. In the end, they respected my decision.
When I was thinking about maybe doing the trach, I looked at how much care Ruby needed at the hospital with nurses and respiratory therapists and doctors and wondered, “How am I going to juggle all of this by myself?” I live pretty far out of town so I don’t even have neighbors. Most of my friends are work acquaintances, and we all travel a lot. When I sat back and tried to figure out how I was going to make it work, it just didn’t seem possible.
Since Ruby died, I’ve started volunteering some at the Children’s Hospital. It’s hard to go back into the NICU, but I like feeling like I’m doing something to honor Ruby’s memory.