One of the things that was great from the Children’s Hospital aspect was the room that they gave us to rest privately in. When we were out in the waiting room, there were other parents out there experiencing a number of different things and many of them were talking to my mother and they kept telling her “well, don’t worry everything is going to be fine”, and in my heart I knew it wasn’t going to be fine. It was kind of frustrating to hear that and it was great for me to be able to go back and not have to hear other people’s stories. It wasn’t helping me any to give me false hope. So that private resting spot was great.

 

A parent

 

Camp Mak-A-Dream
He did Camp Mak A Dream, which was for young adults 18-24, in Goldcreek, Montana. He loved that place!

Mother

 

Using CarePages 
We did use the web site to post a lot of information about our son and every day we would do updates for everyone. That was a great way to keep everyone in our lives connected with what was going on and for us to spill out what we were going through and not have to call everyone a hundred times. That web site was really helpful. We used those CarePages quite a bit to update everyone. That was very helpful in letting people know what was going on.

Mother

 

On the CarePages, we’ve got over 500-600 people, and each one of them knows another 10 or 100, so Paulina’s story went around the world. We had people in the UK, in Ireland, and Canada, and Australia, and New Zealand, and Norway, and Holland, the Cayman Islands. So Paulina had this huge circle of love because my husband and I had both lived in different places around the world and had lots of good friends. So everybody knew Paulina. She was so strong and determined, and she was unstoppable.

 

Mother

 

That last afternoon
I probably would be not in the place that I am now if I didn’t have that last afternoon with Paulina. That is something that I really want to get across, that you can make those last hours with your baby or child or the person that you love who is dying, into anything you want it to be. It’s hard, it’s horrible, but that transition can be beautiful, as long as it doesn’t feel too clinical.

Mother

 

During her surgery
The fact that they reassured us that if at any time during the surgery we wanted to call and check on things they told us who we could go to and that somebody would come right down and explain everything that was going on. I felt like at any given point if I wanted to stand up and say “Hey, what’s going on?” they would have been available to do that. That was very comforting for us, for me anyway I shouldn’t speak for anybody else. That was good. After she died they let us into the operating room and I’m not sure that they do that. I don’t want to get anybody in trouble by saying that, but they let us go in and hold her while they were doing CPR on her. I thought that was great because I felt like I was there when she actually died.

Mother

 

A grief counselor
We always knew that James would die at some point, at a time that wasn’t necessarily natural in the way other children progress and grow. Working with a grief counselor really taught us to treasure every day and to live every day in the present. It gave us the space needed to do anticipatory grieving and found the space; a space, our family counselor, to do that anticipatory grieving without being judged. I think that helped quite a bit, being able to talk through the “what ifs,” being able to talk through those kinds of situations on a regular basis whether it was with the Palliative Care Team or our counselor was extremely helpful. It provided an opportunity to have clear and open dialog with my husband. We weren’t talking about it all the time, but having those specific times was definitely helpful.

Mother

 

A really specific thing someone at the hospital had us do that I never would have thought of at the time was take pictures of him before he passed away. It was something I wouldn’t have thought of with all those machines and his heart was never closed. It’s so important for me to have those. They said just take pictures and tuck them away. You don’t even have to look at them. Just have them. It’s so nice to know we have that.

 

Mother