Take Control – We can help. I think that is probably one of the most appropriate tag lines ever. One of the things that is most frustrating about parenting a child with arthritis is the helplessness. Not being able to control your child’s pain. Not being able to restore their energy, their will and ability to play. Not being able to plan… for what their health will be like tomorrow for school, next week for a field trip, next month for a vacation. Because arthritis wrestles control away from you, whether you are an adult with RA, a child, or a family member. Getting the control back is the name of the game…..
I often wonder why my daughter will have such a fit over something small – say a blood test. She pouts at the idea of having a routine blood test. And I think “ Huh? You have had these every month for eight year!” Or, more recently, she had a complete melt-down over the idea of restarting a medicine that requires a weekly injection. Now, I understand that this would alarm a healthy child who never has to face needles. But my kid has had twice weekly shots, daily shots, infusions that caused vomiting, shots that burned no matter what we tried to alleviate the discomfort… she’s had IV’s galore, not to mention a pretty major surgery. Why would a weekly shot cause such a trauma? Especially when it could help her feel better…..
But then I remember… Take Control. Since she was three years old, she has had virtually none. Procedures, x-rays, medicines, therapy…. All decided with her best interest in mind of course. But not really her decision. I remember when she was getting her first weekly shots – we appeased her by letting her pick the style of band-aid and where the shot would go (left arm or right leg?). It used to help….It was all we could offer her.
And here we are again- only this time at the age of eleven, when it’s normal for all children to struggle for some sense of independence. Normal to push the boundaries to find their place in the world… only my child has some extra shackles restricting her movement. Duh, mom. No wonder she’s fighting! So, we’re at this strange crossroads. I need to let her make some of these decisions… but I’m not ready to let her make mistakes when it comes to her long term health. I’m reminded of the tactic psychologists suggest with children – offer two choices and then let the child pick. Never say, “What would you like for snack? But instead, “Would you like apples or crackers?” We’re trying to give her some control over the plan for medication and physical therapy. IT will be a long process, but I won’t be calling the shots forever, and I have to teach her and trust her. And let her… Take Control.