Still in a Storm on This Journey . . . . Update

I can recall many times over the past three decades when we faced rough spots, and I've said to myself, to my husband, and to my children, "God has been so faithful in the past, and we can trust Him to be faithful in the present and in the future." Sometimes His faithfulness doesn't mean that we see a miracle.  Sometimes things get worse.  I do know that when our journey gets stormy, and I share with our support system (our friends, family, and network of families going through similar circumstances), that support system lifts up Anna (and us) to Jesus.  We continue to pray for Anna's body as the Plaquenil (at a half-dose now, because of adverse side effects) does little, if anything, to keep the inflammation at bay, not only in both eyes, but also at least one joint.  Anna's knee has been very painful these past ten days.  We also pray for Anna's doctors as they work to determine what will help Anna with the least side effects.  

Anna had an eye appointment yesterday.  My husband went with her instead of me this time (he already had a day off, and I didn't then have to interrupt my work day and make up time later).  When I got home, I saw the OCT (the picture of the back of Anna's eye), and the swelling (macular edema) is definitely back.  I didn't see Anna before or afterwards--she is so busy with college work as she gets ready for spring break.  So the realist in me has been a little sad, a little worried at times, wondering how Anna is doing (emotionally and physically), remembering how the first several months of 2014 were when the macular edema first surfaced, and stress was very real, and school work (high school at that time) suffered.

However, Anna just "Voxed" a message to me this evening.  (We use an app called "Voxer" and she and other family members and friends can record messages---sort of like verbal texting---we can send pictures and videos and text messages, as well, individually or in groups.  Our family really likes it, and we use it frequently.)  She sounded upbeat, even though she has a LOT of work tonight and tomorrow before spring break---said she wouldn't even be able to listen to any replies I may send or read the latest e-mail I sent her last night.  As she is processing all that is happening, she assured me that this recurrence of the macular edema and eye issues is different than when Humira failed in 2014.  Anna was thinking that I would probably be updating this blog soon, and she gave me some positive thoughts to share:

• In 2014, when her vision was a problem, we had no idea what was happening, and it took weeks if not months for the pediatric ophthalmologist to realize that maybe she had swelling in the back of her eye (he did not have equipment to test for that). Now we know what macular edema is.  It's no longer an "unknown."  And she trusts the retina specialist to stay on top of the issue and do what needs to be done in order to do everything possible to preserve her eyesight.
• In 2014, she was going back and forth between the pediatric ophthalmologist and the retina specialist, and juggling the two very different personalities and methods and relaying information from one to the other--that was stressful!  Before entering college, Anna pared down to one eye specialist---keeping the retina specialist who treats adult patients as well as pediatric patients, and who works at the medical center where everything they need for testing and for treatment (like ocular injections) is readily available.
• Those stressful months in 2014 led Anna to meet frequently with her awesome high school guidance counselor (God bless him!---I'm still thanking God for his compassion and wisdom), who helped her come up with coping mechanisms and practices to help manage the stress of health issues and frequent appointments and a boatload of assignments and tests.  She now knows ways to stay organized which help to keep her from being totally overwhelmed with everything.
• We don't have as many appointments to Lancaster (in 2014 we were going to Lancaster every six weeks for orthodontia and preparation for jaw reconstruction surgery in 2015).  So that's one thing off our plate.  (Now she's on a six-month appointment schedule with the Lancaster Cleft Palate Clinic and doesn't go back until June.)

I was thinking today that obviously, God's plan for this moment is not any miraculous healing.  So maybe one purpose of this storm is about changing me and my own thoughts and attitudes.  This entire journey has been a process of changing me (and I can only speak for me---not Anna). Please know that when you pray for us, you ARE helping. Even when the answer is not some fairy tale ending.  With your prayers, Anna is staying positive and sounding upbeat and she is filled with hope and excitement of her spring break plans to visit her sister and family in Tennessee in spite of knee pain and vision issues.  Your prayers for her doctors help (I've seen it in the past and trust we'll see again that they work hard to come up with creative ideas and options to help Anna).  Your prayers for us help---to keep this journey in perspective. This is not all that our life is about.  It's just a very small part.  I'm reminded often that each and every day is a gift.