Tuesday, March 19, 2013


It's a word I associated with emergencies. A bright light shot up into the sky at night. A warning. SOS. A light on the road to warn you of an accident. This is the definition of "Flare": A sudden brief burst of bright flare or light. To burn with a sudden intensity: "the blaze across the water flared".


It means something different now. And I wish there was a warning. A bright light to shoot down from the heavens to warn of impending pain. Oh it burns alright, and it's sudden. But not always so brief.

A flare now means inflammation, pain, joints aching, sleeplessness, rash, fever, itching, lethargy.

A Systemic Juvenile Idiopathic Arthritis Flare.
To think that not too long ago, I didn't even know what Systemic JIA was.

 Elliott has had a bad week. His body swelling all over it. Rash covering his tiny frame. Catching him itching so hard he breaks his skin. Barely being able to walk from his bed, to the couch. Hobbled over like a little old man, not the six year old that he should be. Not to mention, complaining his tummy hurts so bad. (The lining of his stomach, intestines and liver, have been affected and have shown inflammation.) Then there's the headaches. Likely due to the fever.

(Taken a few weeks ago, Elliott is a ham!)

It's horrible to see your child in pain. As a parent you want to take it away from them. I can't tell you how many times I've said "I'm so sorry your hurting.". Or prayed over him saying "God, please, I beg of you, give him rest from this pain. Take it all away. Restore his body."

I haven't been able to shake the image in my head, of my Savior Jesus, on the cross. As a parent to see your child in pain and suffering is the hardest thing in the world. To imagine what God went through watching His Perfect Son, suffer for me. Brings me to my knees.

If I'm walking this trial with my baby boy in my arms, because he is in too much pain to walk. To get just a small glimpse of what it was like for My Jesus to carry the cross, he would later be hung on.

I choose to say "Blessed be the Name of the Lord!".

We have some major decisions to be making soon, and would covet your prayers. I'm looking into alternative treatments, a new Rheumatologist, and we are having insurance hang ups.
Specific ways you can pray:

1.) Elliott needs an adapted wheelchair. We've been in the process of getting one for months. Insurance issues. Pray we can get one approved soon. With little, to no out of pocket expenses.
2.) Elliott's current medications aren't working. Wisdom for us, and his doctors on the next course of action.
3.) Sleep. He can't sleep. Pray for rest.
4.) We are working on transferring his care to a different doctor/hospital. Pray, if this is what God wants us to do that the transition goes smoothly and quickly! And if it is not what God want's, that would be made very clear.
5.) Insurance. It's been a mess. I've been on the phone daily. Pray it gets resolved.
6.) Elliott needs physical therapy. We were on a waiting list, only to find out that therapy center doesn't accept our insurance. Pray God leads us to a therapist/center soon, or provides the funds to be able to pay out of pocket for therapy.

Six requests. For our sweet six year old Elliott. We really do appreciate you taking the time to pray for us!

This song has been on repeat at our house. Especially late at night. Elliott knows every word. 
Thank-you for loving our family. 
We are so blessed to have a community of 
family and friends that is lifting us up before the Lord. 

1 comment:

Maryellen said...

Praying for your sweet boy.
I am so sorry, you don't need all this stress with insurance companies. I can hardly believe the things you've written are not automatically covered. It is horrible. Keep your eyes on the Lord ~ he knows . . .