Tuesday, September 22, 2009

Dear Teacher, This is Charlotte...

Charlotte has started preschool! She's thrilled about going, loves her new friends (girls names are all I have heard, no boys names ... is that the 3rd girl in a family thing?!) and ADORES her teachers. So do I! When Charlotte was first diagnosed with JRA, her older sister Ellie was attending this same preschool. I shared with them what we had learned as a family about Charlotte & they shared with me their empathy, understanding & knowledge about the disease, the medical field, & foods that affect the bod. We had great conversations and a great deal of sharing between us.
When Charlotte leaves this cocoon of safety & love & hits "the big time" in kindergarten where she could be one of 600 at the school, I am reminded of what I will need to share with them, rewinding time to when she was two & diagnosed with Juvenile Rheumatoid Arthritis & what that could mean for her today:

Five Things Teachers Need to Know
1. My child may experience discomfort from arthritis even when nothing appears to be wrong. Please take her seriously if she says she's in pain.

2. My child may need to miss school due to medical appointments and arthritis flare-ups. Please let me know how I can help her make up missed work.

3. My child may tire easily or have trouble doing certain physical activities. Please be aware that this is a health problem and not a behavior problem.

4. It's okay to let my child's classmates know about his condition as long as it is done in an appropriate way. I'd be happy to help prepare a program.

5. Please keep the lines of communication open between our home and the school. My child needs all the adults in her life working together.

With deep respect & monumental gratitude, Charlotte's Momma

Tuesday, September 8, 2009

I'm THAT mom...

School has started, we are on day 4 & the hand washing immediately when they walk through the door has paid off. So far. All these reports of H1N1 hitting fast & hard on college campuses has me worried.

So when we went to "Back To School Night" before school started to meet our teachers & drop off our supplies, I became "THAT MOM."

To the 3rd grade teacher that I don't know yet, I wasn't sure what family history she was aware of.

"So... (wait for it)... my only concern (wait for it).... is really what my daughter could bring home (here it comes).... I mean in terms of illness. You see, our youngest..." insert quick synopsis of Charlotte here & a brief mention of her immune suppressant drugs, her monthly visits to the hospital & eye exams. Try to do it fast, don't lose her in the details, but emphasize your point of concern again.... KIDS. GERMS. PARENTS!!
I tried to chuckle & make light of a heavy situation so I wasn't "THAT MOM." But the truth is... I am. I admitted it to myself that I am that mom because its my job AS their mom. My point: I want kids to stay home if they aren't feeling well. I want parents to know that pushing their child out the door if they haven't been cleared of a fever for 24 hours, puts my ill-child at risk. Just by exposing Charlotte's sibling to the germs of 3rd grade, can cause a "bring home & share" affect. Charlotte's sisters have strong immune systems & healthy bodies, they can blow through cold season without a sneeze. But Charlotte's immune system is soooo outta whack, it doesn't know if its coming or going. Any little thing coming in contact with her can throw her off. "The Girl In the Bubble" isn't an option, believe me, I looked into it (again, please insert laugh here).

So I hope to share ourselves more with our 3rd grade teacher, so she knows that we are not obsessive compulsive. We have a good sense of humor & an understanding of carpe diem. Our lives have just been rocked a little & we are always on a bit of a teeter totter with Charlotte's health. Anything to keep her above water... is sooo appreciated. H1N1 is not on our side & we want to keep it out THERE.

We have 2 eye appts before her next round of remicade. To see if that one cell was just a wacky thing or see if he's brought friends. We had an excellent visit with our pediatric rheumatologist at our last Remicade infusion & we are prepared if tomorrow's eye exam shows more than one cell, what direction to go and what that could mean. I don't want to throw that vibe out there, so for now, we will keep positive thoughts that the one cell is still a lonely cell or he's gone away. We will know tomorrow.

And this girl sleeping.... We want that girl back & are crossing our fingers for tonight! She's gone through 2 very restless nights of night terrors that are sooo freaky. I can be right in front of her & she's still screaming that bees are flying all around her. We are hoping that 3rd night breaks the cycle. Is she coming down with something? Is she sleep deprived, water deprived, stressed, body stressed? Its all out there being examined & we are trying to figure it out for her so can sleep well & have good days!