I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis. Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."
Monday, July 14, 2014
We Keep Singing . . . . even though it's been a little dark
A favorite author, Cindy Woodsmall, posted a quote today: "Faith feels that dawn will break, and sings while it is still dark." We are a singing family, and sometimes the on-going health issues seem to have a darkness about them. So this quote seems so appropriate to describe the year of 2014 so far.
I'm not feeling particularly eloquent tonight, but this blog needs updating. I know many of the blog followers want to know what's going on with Anna in her JA journey. Other JA parents like to know about life with Juvenile Arthritis and Uveitis. It truly helps to know that none of us are on this journey alone. We have each other, and for those of us who put our faith and hope in Jesus, we know that He is with us on this journey---no matter whether we are feeling Him or not. For me, and for Anna, He is the source of our strength---our "strong tower," our hope, our anchor. Despite everything that has happened these past several months, one of the true highlights of 2014 for Anna was attending the Creation Festival (Northeast)---celebrating our Creator!, and especially seeing and hearing her favorite group, "For King and Country." She was excited to see the above photo on the Creation website, and she found herself in the picture!
The summer has been busy with trips to and from Hershey at least every two weeks, sometimes even more frequently. (Plus a few visits to the oral surgeon, and a trip the Lancaster Cleft Palate Clinic as we begin to get her teeth into place for eventual jaw reconstruction.) Add to that daily Pred Forte eye drops, a dilating drop at night, Remicade infusions (every four weeks), and weekly Methotrexate. Except that Anna has not had her last two Methotrexate injections, because she developed what would seem to be a small infection from the extraction of her four wisdom teeth and four front molars (that was in mid-June). Her ophthalmologist sighed a little when we told him that (about missing the Methotrexate recently)---her left eye has maintained inflammation at a 1+ level for the past month at least, with no improvement. While we are so thankful that the eye is not worse, we're getting a little uncomfortable with the duration of this level of inflammation, and the negative effects it's causing for her left-eye's vision.
I've talked to God a lot about all of this! He has answered. I've heard Him---with loving whispers from Him, songs and peace and assurances that we can trust Him for the entire, big, beautiful picture, despite the fact that He's not planning a sudden, healing miracle in the near future (I got that message from Him, too). So we continue to sing, praise Him in the storm, thank Him for protecting Anna in many ways (her brother ended up with a bacterial infection at Creation, but Anna didn't!, and she hasn't experienced a whole lot of really negative side effects from her various medications so far). I also pray for her doctors a lot (and thank God for them and the wisdom and intelligence He has given them).
And when the worrying seems to get a little heavy at times, I remember the lines of a Newsboys song from their "Adoration" CD:
Lord, I don't know where all this is going, or how it all works out.
Lead me to peace that is past understanding; peace beyond all doubt.
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