Saturday, May 16, 2015

Art of Awareness Blog Hop . . . Juvenile Arthritis

"The whole idea of compassion is based on a keen
awareness of the interdependence of all these
living beings, which are all part of one another,
all involved in one another."
-Thomas Merton

I first want to start out by saying thank you to our hostess, Lori of Pretty Things,
for this great idea, and to bead artist, Heather Millican of Swoondimples. for her bead beans
that you will see as a common denominator in everyone's Art Awareness piece today.

My hope is that this awareness blog hop will bring a new sense of compassion to all of us.
Because everyone is fighting something and we never know what life will throw at us, or where and how hard we will land (or fall). Because it doesn't just effect us personally, it ultimately effects us all.

Hi, my name is Kim, and I am a parent of a child with Juvenile Arthritis.
Approximately 300,000 children in the U.S. as young as infants to teens have been diagnosed with some type of juvenile arthritis. There are six different sub-types, 5 of those being autoimmune diseases, with the last one considered an auto-inflammatory disease, and the one my son has.

In March of 2103 my son was diagnosed at the age of 15 with a rare and serious form of juvenile
arthritis called Systemic Onset Juvenile Idiopathic Arthritis or SO JIA, sometimes referred to as Still's Disease. Out of the 300,000 kids who have arthritis, only 10% get this type.

What is SO JIA?

It is a systemic inflammatory disease that can affect their organs and tissues as well as their joints. It is often accompanied by high fevers and a salmon-colored rash at the onset of illness and has the potential to be life-threatening.

Here in the United States there are currently less than 250 pediatric rheumatologists and 90% are
clustered among the large cities. There are 11 states that have no board-certified practicing pediatric
rheumatologists, 19 with three or less, and the remaining have 4 or more. Some people have to travel
long distances on a weekly or monthly basis just to get treatment.

My son wakes up with stiffness and pain on most days. He is tired more often, and everyday small motor tasks like buttoning a shirt can sometimes be challenging. Juvenile arthritis is not "just arthritis." It's MRI's and CT scans and x-rays. It's hospitalization for an infection. It's emergency room visits, and irreversible damage to joints. Sometimes it's having to give up things you used to do. It's hours and hours of infusions and blood draws, lost time from school and make up work. It's serious side effects from those infusions including the risk of cancer. It's the 5 stages of grief that you go through as you see your child lose his "old" life in exchange for this new one. It is a thief of childhood and adolescence and it impacts the entire family.

I ran out of daylight as I got this bracelet done last minute so I used my cell phone to save time. And I can't believe I forgot to take a picture of the back of the bead which has a ribbon imprinted on it. This week has been a train wreck of a week between the 8" of rain in one night and flooding that nearly kept us from getting to our infusion (except that the one on ramp I needed to take was the only one not under water), waking up to a completely defrosted freezer and refrigerator full of food (it was the converter), the internet going out in the middle of writing this and random power outages. And sick caterpillars and dead butterflies ( I raise them.) So these are what they are, the color is slightly off. I promise it all blends in person. The dangle flower beads are a pretty gray-blue and are opalescent which doesn't translate in the photo either.

I chose the word "reach", which is my word for the year, to signify reaching for hope, and faith and for a cure. And because despite all these challenges I want him to still be able to reach for the stars and touch everything in between. (more on my word reach here)

In a perfect world I would have gotten this post done a month ago, but nearly a month ago our world was turned upside down once again. And rather than write a novel (I know, this is probably already borderline) , I do hope you will click here as this link has an overview of what the first few months were like when he was first diagnosed and is part of a bigger story. It will help you understand the gigantic peaks and valleys of this disease that are always ongoing. No good news goes uncelebrated at our house.

So fast forward, back to nearly the first of this year. He has continued to have flares, which include the systemic rash that comes and goes and is a sign of something going on. And it's accompanied by more pain and stiffness and intermittent fatigue. And my mom sense says in the last few months something just seems off. I've noticed the joints in his hands are looking bigger and swollen and I inquire about having x-rays done (that they compared to his baseline ones from two years ago). There is now permanent and irreversible erosion in his hands, primarily his left. And they are adding methotrexate, a chemo drug, to prevent further damage to his hands. He is only 17, he will need those later in life. And here's the thing, we have to do the injections at home, weekly...sigh.

Yes, kids get arthritis too and I often hear, but he doesn't look sick. And that's because his body
is waging war against itself on the inside. He won't outgrow it and there is no cure, but we do pray for remission or better yet a miracle. 

To date, my son is one of the strongest and bravest people I know.

Love, Kim

Tuesday, May 12, 2015

Oh What a Beautiful Mornin' . . .

Oh What a Beautiful Mornin',
by Rogers and Hammerstein II

Oh what a beautiful day,

{KK Warm Sun}

 There's a bright golden haze on the meadow,
All the sounds of the earth are like music.
Especially the sounds at a sunrise.

I've been absent from here, and have spent a great deal of mornings in the last few weeks at the sunrise. It's that one place that gives me the reassurance of a new day. Not tomorrow's new day, just this one, the only one promised.

This coming Saturday, May 16th, I'm participating in a unique "Awareness" blog hop. Each participant has chosen a special awareness to write about. Either something that has touched them personally or something very close to their heart, and I would be so grateful if you came back . . . I will be sharing a lot more information about Juvenile Arthritis and some of our journey. It will explain why I haven't been here, and our challenges going forward.

And one last thing, today is my last regular post as a contributor at FOL...Goodbye doesn't always mean, the end.

Love, Kim xo

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