This year’s Christmas tree is very different, and I’m not talking about the flocking. My hope for today is to not only inspire you with a pretty tree and cute ideas, but to bring awareness to a dreadful disease that over 300,000 children suffer from, which most folks are not even aware of. Unfortunately, I know this because our daughter, has it. Nine years ago our daughter, Daphne (who was 10 at the time) came down with a nasty virus that kept her home from 5th grade for over 2 weeks. She had a high fever on and off, severe joint pain that made it almost impossible to walk down the stairs, and the Dr.’s could only tell us by her blood work that she had some sort of mystery virus. All we could do was treat the symptoms, watch Daphne closely, and pray she felt better soon. Welcome to this year’s very special tree…the “Blue Ombre Flocked Juvenile Idiopathic Arthritis Christmas Tree”…
Before I explain further, I want to first give a big thank you to my blog friend Carrie, from Lovely Etc. who invited me to her popular “Very Merry Christmas Tour”, and said she loved the idea behind my “JIA Christmas Tree”. This lovely Christmas tour also includes some of my dear blog friends including Kristi from Chatfield Court. If you happen to be stopping over from Kristi’s blog, welcome (I invite you to subscribe). You can also find all of the blogs included in the tour at the very bottom of my post.
Getting back to the story, Daphne did get better. She carried on just like a normal 5th grader until strange symptoms appeared that we didn’t realize may have been related to the original virus. For years, Daphne’s symptoms seemed to come and go with no diagnosis. Symptoms included a slightly raised non-itchy rash that looked like hives, periodic joint pain, exhaustion, low grade fevers, and night sweats.
NOTE: Not all JIA patients experience things the way Daphne has. Please research Juvenile Idiopathic Arthritis for more specific information and talk to your doctor if you have concerns.
After many years, many blood tests and Dr. visits near & far, Daphne was diagnosed with Poliarticular Juvenile Idiopathic Arthritis after her wrist and a few fingers began to give her pain, swelling, and stiffness- consistently. Note the key word there is “consistently”. We realized that the before-mentioned symptoms Daphne experienced for years can in fact be early auto-immune arthritis related symptoms.
What most people do not understand (and really frustrates us JIA families) is that Juvenile Idiopathic Arthritis is NOT the osteoarthritis we get as we age. I’m not qualified to get into specific arthritis descriptions, but I have learned JIA is an auto-immune disease where the immune system over reacts and attacks healthy joints. At first, Daphne would only feel the joint pain when she was ill and the immune system was on overdrive. Now a days, Daphne’s immune system is always on overdrive and her main problem area is the middle finger on her left hand. Daphne is an artist in college and runs her own “slime” company, so this affects her life immensely.
I didn’t realize how common Juvenile Idiopathic Arthritis was until I began researching it, and joined a parent support group (please contact me privately if you need a JIA support group reference). Some children suffer far worse than Daphne and it effects their ability to do day-to-day activities such as walking.
For me, the most difficult aspect as a parent, aside from the obvious, is the treatment options and medicine. There is no cure for JIA and treatment involves calming down the immune system with very strong, sometimes risky medicine. Most patients begin treatment with a common chemo therapy drug that causes severe digestive issues, exhaustion, and flu like symptoms 2-3 days out of every week. Can you imagine being 16 years old and sleeping away your weekend? In addition, it can cause weight loss due to no appetite. Lastly, some of the drugs are taken by injection, or intravenously. That can be scary and difficult on anyone.
What I have also witnessed as a Mom with a child with JIA, is that when I tell some family members, friends, or acquaintances about Daphne’s illness, they have completely no knowledge (or empathy) of how serious Juvenile Idiopathic Arthritis is. People automatically assume that Daphne has a few sore joints. They think popping a few ibuprofen, and some stretching exercises will ease the pain. They sometimes make me feel as if I’m over reacting.
To make a long story short, the “big deal” is that if we don’t get Daphne’s JIA under control, which sometimes can be challenging, then she could be on harsh medicine the rest of her life, lose the use of affected joints, the arthritis could last into adulthood and turn into rheumatoid, or worse. By worse, I mean the “risk in suppressing the immune system” which can make it difficult to fight off infections and even cancer for some at higher risk.
The good news is there is hope for medicated remission, and then possibly remission. That is our goal! Daphne has been unable to successfully achieve either, but our entire family never loses hope. Tenacious Daphne is one of the bravest, strongest individuals I have ever known. She continues to fight Juvenile Idiopathic Arthritis with all her might, and although she should without a doubt be frustrated because of her repeated painful flare-ups, and continued medicine changes, she continues to have hope, and never complains.
Daphne is not alone and I asked parents/patients to contribute to our JIA Christmas tree with a homemade ornament. I only received 1 ornament so far, and it literally brought me to tears.
Dear Carson: Thank you my little friend for contributing to our beautiful JIA Christmas Tree! This tree symbolizes the hope we all have for finding a cure one day for Juvenile Idiopathic Arthritis! Never stop fighting.
Before I get to the “JIA Christmas Tree” decorating tips, I wanted to invite you to donate whatever you feel comfortable with to the “Arthritis National Research Foundation” today because Facebook & PayPal are matching our donations. Our hope is that there will be a cure for JIA one day and our children will no longer have to suffer. These donations help scientists find that cure, and help them find better treatments in the process. Thank you in advance for your donation!
Decorating the Flocked Blue Ombre Christmas Tree
The inspiration for this year’s “Blue Ombre Flocked Juvenile Idiopathic Arthritis Christmas Tree” obviously comes from the love I have for our daughter, Daphne. Be that as it may, I don’t think hanging little D’s or little baby pictures of Daphne all over our Christmas tree would really grab my readers attention, or would it 😆 . Therefore, I searched my creative soul for an idea that truly is naturally beautiful. I happen to come across this photo I took last year of our new Christmas tree in our yard. I fell in love with the way the snow nestled onto the branches of the tree just like it was frosting. Boom…inspiration from Mother Nature strikes again.
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But how was I going to flock a tree to make it look so full of snow and natural? I mean I’m from Buffalo, so I do know my snow, but come on. My first thought was white tulle, but then it lead me to pillow filling I had left over from a pillow I had made. POLY-FIL to the rescue. I had no idea if this would work, but boy did it ever. It was extremely simple, too. Just pull a handful out of the box, and place it on the tree limbs so it looks like it’s falling down. You can alway use the photo above for inspiration. I used 2/3 of the box for this 7.5 ft. tree.
PET TIP: I was concerned for my cats so I first tested the Poly-fil out before I snowed all over the tree. Both my cats sniffed the Poly-fil and then went back to chewing on the tree like always. They could care less. Be sure to test it out first and do not use if you think your pet will consume it.
SAFETY TIP: Do not use Poly-fil next to an open flame and read packaging for further information on fire hazards. It is also not meant for small children.
As for the rest of the tree decor, I decided on blue ombre ornaments to represent the different types of arthritis. Blue is the color of choice most arthritis organizations use to represent it. Most of the ornaments I had in my stash, or found at local craft stores. I incorporated clear iridescent ornaments that reminded me of bubbles (can you believe I found those at a thrift store?) just to add a little bit of “ice”. The ribbon went on after the snow, but before the ornaments. The star floats, rotates, and yodels (just kidding) cost $2 and the tutorial for that is found here.
Thank you for taking the time to learn about our Juvenile Idiopathic Arthritis journey. You’ll find more Christmas inspiration below including from my friend Tara, from Lehman Lane!
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Tags: arthritis, blue, Christmas, holiday, juvenile idiopathic arthritis, ombre, tree Posted by