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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Tuesday, March 6, 2012

Defining "Hardship"

hard·ship
 noun \ˈhärd-ˌship\
Definition of HARDSHIP
1
2
: something that causes or entails suffering or privation

I guess that overall, Jenna is one of the “lucky” ones. Her diagnosis of Juvenile Arthritis not only came at a young age, but it also came quickly. By being diagnosed so young, she really doesn’t even seem to realize that she is in any kind of pain or discomfort. It has become a way of life for her. Being diagnosed so quickly means that we were able to get it somewhat, not entirely, but somewhat under control before any serious damage could be done. That being said, isn’t that in itself a hardship? Being a child and not knowing a comfortable, pain free day? Of course she has all the typical hardships that any child with JIA suffers. The weekly injections, monthly blood draws, numerous visits to doctor’s offices, missed school, not being able to keep up with friends, needing to drop out of sports, being “different”.  But Jenna’s biggest hardship is being without her big sister.
You see, we were living in Maine when Jenna was diagnosed in 2008. Maine is one of many states in this country without a pediatric rheumatologist. In the beginning we were taking her to an adult rheumatologist that was willing to treat children. Being new to the disease, we thought that this was acceptable. Arthritis is arthritis, right? WRONG.  I am so fortunate that I “met” so many wonderful JIA Moms online. They “schooled” me on the importance of Jenna seeing a pediatric rheumatologist. The differences in adult arthritis and juvenile arthritis are so vast that unless specifically trained, there is no way to effectively treat the child. Her adult rheum said that he knew a fellow at Duke Children’s Hospital and he would speak to him about getting Jenna in there. Would we be willing to move? Or choices were as follows: Stay in Maine and travel to Massachusetts every time she needed to see the rheum, which at that time was every 3 weeks. Continue having her treated by the adult rheum, and watch her deteriorate. OR, pack up and head south. For us, there was no question. We knew that we needed to have her seen at Duke. They are renowned as some of the best in the country. It is a long and complicated story, but my oldest daughter was left behind with her Father in Maine and we still, nearly 3 years later, do not have her with us.
So, imagine if you will, being a 5 year old sick little girl, scared, in a new city, a new state, new school, new home, new friends, new doctors…..and not having the love, guidance and support of your big sister. That is Jenna’s biggest hardship. She is going through this fight without her best friend by her side.

1 comment:

abcsofra said...

I just wanted to cry reading this post. Can they skype maybe via the computers? JRA is difficult enough without having to leave a loved one behind. Maybe her older sister can visit with you guys for the summer? At least then they could play catch up and maybe figure out a way to stay in touch daily...texting and such or like I already said skype. My heart just got heavier for her. Give her lots of extra hugs from all those out here in cyberspace keeping the faith that this will all work out.