One thing we have struggled with is when to discuss different aspects of this nasty disease with Emily. She's only five years old so it can be a lot to take in that young, but when you have to spend 57 days in the hospital and hear announcements like "code blue room xyz" topics like life and death tend to come up.
At one point Emily decided she would not take any more medicine. We were still in the hospital and she just decided she was done. It was at that point we had to sit down and explain the very nature of her arthritis and how the medicine was saving her life. 20 years ago MAS killed and doctors couldn't explain it. 30 years ago SOJIA was called Rheumatic fever and baby Aspirin was the only regimen. Those children who didn't lose the battle then grew up in wheel chairs and I've watched as some of them have lost their battles as adults.
We found because this was happening to Emily she needed to talk about it. She needed to understand it was a very serious matter and so it helped put things in perspective for her. She still doesn't understand it all, but when she introduces herself to another child she will say, "I'm Emily and I have arthritis." Because it is a part of her life now and will be forever. She is learning to live with it and live around it.
Because talking helps we look for ways to encourage that conversation. Emily has a drawer filled with medical play items and she enjoys watching Doc McStuffins, a Disney show about a child playing doctor. We've found it especially helps to talk about other children going through similar experiences. We met a dog the other day with only three legs and so I made a point to talk to her about how brave the dog must have been to go into the dog hospital and how he had to get shots and IVs too.
Since we may have to re-introduce nightly injections the point of talking about it has come up once again in our lives. Emily is not happy about the possibility, but she knows it may happen. We talk about it once and then don't worry about it. She knows and if it happens we will revisit the discussion and importance of them. We will also have to explain why the infusions didn't work which will be harder, but we'll figure it out.
Lately Emily has been mimicking Doc McStuffins and even has a door sign to show when she "doc" is in or out. I think Emily would make an amazing doctor someday, she would be able to relate to her patients and I even told her perhaps she could be the one to cure arthritis in children.
The "doc" is in:
The "doc" is out:
When the child is living the trauma talking is very important.
