Tuesday, October 15, 2013

It will impact entire family.

The doctors, The Arthritis Foundation, and fellow families with JA have numerous times mentioned to me that this disease will effect the entire family. I couldn't image what it could mean for us when they first said it to me. We are the typical American family that is juggling school, work, sporting events, play dates, sleepovers, vacations, and family time.
Each member of our family has commitments of their own and we still keep our schedule pretty normal:
Val is in 9th grade, in cheerleading, and constantly developing her social calendar.
Dan is our worker bee, always trying to fulfill his honey do list, and enjoys spending his free time at the gym.
Bella wants to play every sport possible, over fill her social calendar, and feed the needy with her yearly food drive. Obviously, her sports have been changed a lot.
Chloe is in 2nd grade, spends most of her free time reading and learning, she tries sports but hasn't found her place in the athletic department, she would much rather build a fortress for bugs in the backyard or play house with the dogs.
I spend my days planning our lives, making all these social calendars and sports fit in somewhere, making handbags for my business, and volunteer in my community in numerous projects (right now my current project is Helping Hands 4 Emilia which is raising money for Bella's friend Emilia who was diagnosed with a rare bone cancer).
For the most part there have not been any huge changes in our lives, but there are areas where we all have had to help out or switch around schedules. Val has been so great with making sure Chloe gets off the bus since I take Bella to physical therapy 2-3 days a week at the end of the school day. Chloe has had to sit through a few appointments and always remembers to bring a book to read while we wait for Bella. I happily lessened my load in my business and volunteer calendar to fit in all these extra appointments that Bella has to go to each week. Oct & Nov will be full of many appointments since we have to see an eye specialist, her Rheumatologist, family doctor, physical therapist, and dentist. They will all be doing tests and checking the progress of her Arthritis.
Bella has had the most change because she has had to drop sporting activities, limit her activities, and sometimes sit out. But we try to keep positive and offer her alternatives. Bella has decided to join Girl Scouts again this year.
But the one member of the family that has surprised me the most is Chloe. A couple of weeks ago when Bella was in a lot of pain Chloe rushed off the bus to go check on Bella after school and offer to get her a drink and snack. The next week she came home with a drawing for Bella which was the Blue Ribbon for Arthritis Awareness. Then, just last week Chloe came home with a card she made for Bella at school signed by her teacher and classmates. The card below says: My sister has Juvenile Arthritis. She needs to be careful because when people are sick it makes her arthritis worse. There is no cure for juvenile arthritis that means that Bella will have juvenile arthritis forever. To: Bella From: Chloe
 I am amazed because I never sat Chloe down and explained to her what Bella had or what it meant. But during our conversations with Bella she quietly listened and obviously took notes. Chloe is a smart little girl and has a kind heart. She didn't need to be told to help out or care, she just did it. She melts my heart.
So for now, we all have tailored our schedules a bit to fit in the changes, we still are still going strong, and fighting along side Bella. In the end, it is Bella that struggles the most.........but were a family and we're in this together!


4 comments:

  1. Wow!! Just wow. Made me cry. Love those girls!! Give Chloe and extra hug from Nana and tell her how proud I am of her for being so caring and thoughtful to Bella.

    ReplyDelete
  2. So sweet! Love those little girls. Chloe is such a sweet heart! We hope & pray that Bella had more good than bad days.

    ReplyDelete