The Common Thread

Yesterday I attended a Solid Organ Transplant Support group that meets every Wednesday at four o'clock. There were three mothers and Meg, the social worker. One mother's daughter has had a heart transplant about a year and a half ago when she was one year old. The other mother had a four year old daughter who was diagnosed with some sort of kidney problem when she was around Joaquin's age. They were followed by a nephrologist in their home town of Fresno and it was around the beginning of June that she went in for a tonselectomy and ended up having her kidneys and kidneys fail. She was in a coma for most of June and only recently has been feeling better and telling her mama that she was "feeling better and was ready to go home." They're hoping that they can go home next week, but going home means being transferred back to their hospital in Fresno and then hopefully going home some time after that. Zaria is the little girl's name and her parents knew that in the future she would need a kidney transplant, but the tonselectomy seemed to bring the time faster. First Zaria needs to heal and be in a little better health before she can undergo the transplant. They are hoping that her father is a match and can donate his kidney.

About half way through this meeting two parents came into the room whom I had never seen around the House. All of the parents and families in the RMH recognize each other even if we have never formally introduced ourselves. Some choose to keep to themselves, some get acquainted with everyone if anything just to have a friend because they are in the House all alone without any family. The parents who came into the meeting were from Michigan and their little girl had some sort of long-named medical condition which I could remember if I wanted to and they had come to Stanford to see a doctor who is one of the best in the country and had agreed to meet her and see if he could perform a surgery. They went through the testing and it was decided before going into surgery that there was nothing they could do. So the parent's two choices were: 1) put her on the list for a heart and lung transplant, or 2) take her home and let her live out the rest of her life. Finding a heart/lung donor is hard and their little girl says that she doesn't want to do any more surgeries and just wants to go home to be with her two older brothers. All of this was dropped on them yesterday and they wanted to come to a organ transplant group to hear our stories and experiences. They are having a hard time deciding whether they should try for the heart/lung transplant or just let her, in essence, die. The little girl doesn't want any more surgeries, but is she capable of making that decision for herself? I've always thought while they may not have the same understanding that we do, they are wise little people.

So much of what her parents were talking about hit home for me. I remembered being in that position where I waned what was best for Joaquin - but what did that mean? Joaquin's situation is a little different. A kidney transplant is relatively easier than a heart/lung transplant, but making that decision for him was hard for me. So many times I wished that I could have asked him what he wanted to do. I did ask him a few times. The decision never felt like a very clear one for me and I feel like that is what they are feeling right now. Do they respect their child's wishes and take her home or do they go through with more surgeries when the transplant does not guarantee a better life for her? I told them that while it may seem like a hard decision now and a very unclear and confusing one, that the path would unfold in front of them. That's how I feel it worked out for us. The whole process of transplant didn't feel like trying to swim upstream, it felt like I was being floated down.

I walked away from the meeting feeling good that I had met other parents who are going through situations that I can relate to. It's like a buoy in the ocean sometimes. I realized yesterday too that no one is going to have the same exact story as Joaquin's - each child is different and each one's condition is unique. But to know that we all have this common thread of having a child who is not "normal" - whatever normal means and then who defines normal? I think that is why the RMH is comforting on some level, because we are all dealing with a "sick" child (I don't even like using that word because Joaquin is not sick in my eyes) and we can relate to each other and complain about the hospital and bad nurses or just give each other coping tips. Some of the people that I have met here are the strongest people I've ever known. It's amazing what an experience like this will bring out in a person - the good, the bad, the ugly, and the beauty of life and living.














Joaquin finally fell asleep when he couldn't go any farther.