Hard as Jade

As I sit down at the computer to write, I am scrolling through my Facebook feed and come across a post by one of my high school classmates.  Her daughter has leukemia and has just entered the hospital for a lengthy stay to begin a new round of chemo.  I am glad that she has the forum of Facebook to post about their struggles.  Her and her daughter are truly an inspiration to all.  They have a special page devoted to her journey with this awful cancer.  A special page chronicling her struggles and her hopes and her fears and her tears.  However, I am also struck by the thought that my daughter also has an illness.  But I can’t post about it because “it is not socially acceptable”.  I can’t put her name on the prayer list at church because it’s embarrassing.  She can’t just tell everyone about her condition because the other kids in the youth group or at school will make fun of her or won’t accept her.  The kids won’t understand her “illness”.   Or she is afraid that other kid’s parents won’t let their kids hang out with her because she’s “not normal.”

I cringe when there is an outburst and wonder what the other mothers are thinking about me and my daughter.  I worry about her when she goes to church camp or weekend retreats.  Is she going to be able to sleep?  Is she going to be able to wake up in the morning? Is she going to remember to take her medication?  Are the other kids going to be mean to her?  Are they going to accept her?  Is she going to have a huge meltdown about some small inconsequential thing and the other kids think that she’s crazy?

I worry about my daughter every day as she goes to school.   Especially this year.  She is currently repeating the 8th grade at a small private Christian school.  Everyone knows everyone else.  The other students in her class know that she is repeating the 8th grade.  She is not a dumb kid.  But last year to say the least was a struggle.  I will blog about that another day.

My daughter also worries about going on trips.  She has many of the same concerns that I do.  In fact, we have cancelled trips that she really wanted to go on because we (and her) did not think that she could handle the stress and all of the over-stimulation at a youth event.

My daughter wants to be a “normal” teenager.  She wants to participate in all of the youth activities with the church.  She was to be a part of the lock-ins and the weekend retreats and the summer Bible camps.  But she has “drugs” that she takes at breakfast, supper, and bedtime.  She has a very rigid sleep schedule.  Many times this is looked at as an inconvenience to the camp staff and the camp nurse (if there is even a nurse at the event) to make these concessions.  And we also know that the days following the event will be rough as she tries to get back on HER “normal” schedule.

My daughter often asks me “why does she have to be this way?”  “It’s not fair,” she says.  “I don’t get to do the things the other kids do because I have to take my medicine.  Or because I have to go to bed.”

Even after all of these years, there are still some medical conditions or diseases that are looked upon as if that person was an “unclean leper”.  There is such a negative connotation associated with that person, that we avoid them at all costs.  And because I am the mother, I am also looked down upon.  “Your child is out of control.”  “Your child hit my child and that is not how we handle things.”  “Your child is lying.  Your child is disrespectful.  Your child is taking advantage of the situation.  Your child is a manipulator.”

I know that the first step in a situation like this is to get the word out there.  To educate others about the medical conditions so they are not scared or ignorant.  Jesus loves and cares for all of his children, even the lepers.

My name is Charity.  I am the mother of a teenage daughter who is a daughter of the King and a child of God who has a medical condition called bipolar disorder.