I have decided to share more of the story behind the story – to be more transparent (shout out to my sis.) Natural tendencies do not lean me toward “social networking” but this is for other RSD moms and families.
For the first three years after Kathryn’s diagnosis, I was on a roller coaster ride based on how Kathryn felt.
On a good day — when the pain is tolerable for the moment, no killer head-ache, there are friends with her who understand her need to rest and to take it easy, stress is low, maybe a summer day where there is no pressing school work — life is good. When all factors come together and Kathryn is beaming and bright enough to lighten the room and all in it (she can often manage this on the worst days) I used to get my hopes up “she’s getting better- God is working that miracle that we’ve been praying for.” Or I would go into denial mode – “All is well – she doesn’t really have RSD.”
Then inevitably, the crash — pain and illness hits as hard as ever, or she just runs out of energy to hide it and to pretend any more — reality dawns, “can my daughter really have this monster hunting her?” — day after day, relentless, straight out of the mind of Satan.
Kathryn’s goal (of her choosing or her knack for survival?) is to protect all those around her from the monster — ignore it and move on. Admirable no doubt, but at what expense to her? I talk to other moms of RSD children and this pattern is very familiar, particularly if their child is a girl. Did she learn so quickly that no one wanted to hear it, especially from a “hysterical” female?
God help us to forgive ignorant clinicians!
Sometime in year number four, I noticed that the roller coaster ride is rare. I mostly stay in a place of acceptance and non-denial now, but I can still forget how hard Kathryn has to work to hide the monster.
I remember to enjoy Kathryn and she is soooooo enjoyable — in the good times and the bad.
How does a young person get that clever and caring?
How strange that this menacing and excruciatingly painful condition often brings out the very best and brightest of Kathryn.
Kathryn's Pages 