So much has happened in life since I last posted . . . .and we are overdue for an update here (this will be a LONG post!). Anna became a first-time aunt in September -- one day after her 16th birthday! We've been to Tennessee and back for a visit. She also now has her driver's permit, so she and her dad are fitting in driving practice as our schedules allow. (Scott is a much better and more patient teacher than I!)
We went through August, September, and October without many appointments, and that was a nice break/reprieve. However, November and December seem overly FULL of appointments now! Anna saw her pediatric rheumatologist last Friday, and today was a visit to the pediatric ophthalmologist. I know that many scour the internet to find "real life" stories about children and teenagers with arthritis---I know I did back in 1999 when Anna was first diagnosed. I wanted at least a vague picture of what might be in store---what kind of life could I hope for for my youngest child? This type of thinking and questioning just comes with the struggle---the grieving process when you have a child with a chronic disease, when it seems like every expecting parent will just be happy "as long as it's healthy!" Believe me, you CAN have a good and joy-filled life, even if you end up dealing with an on-going illness or disease. So when we have good news, we share. When we have not-so-great news, we also share. I'm a realist. This is life. We deal with "what is."
While I realize that in the early years it was easy for me to whine and sometimes wallow as I worked through my feelings, I don't want to do that anymore. I don't want or need people to feel sorry for us. Everyone has something that they deal with. One of our issues in our family is Juvenile Arthritis. I do appreciate prayers, because I know for a fact that prayer changes things---and usually changes us. I know that God could choose to heal Anna completely, but I also know (because He told me early on, and He has given Anna some intuition, as well), that complete healing is not His plan for us in this journey at this time. We've been blessed with so many years of mild arthritis and uveitis that was finally brought under control when Anna started Humira.
A month ago Anna mentioned that her neck was stiff. So we mentally filed that information, checked in with her periodically about that issue, and knew that we needed to share that information with her rheumatologist. On the morning of her appointment, she also mentioned that she's been having some trouble with her one elbow. Anna rarely experiences severe pain, even with active arthritis, but she's noticed that her range of motion in her neck has decreased, as well as in her left elbow. They don't hurt, she says, unless she tries to move her neck or elbow past the point of where it wants to move. Nothing really significant or serious---but enough that it feels like a different direction (or maybe just some added bumps) in our JA Journey. We'll deal with it. For now, Anna can take ibuprofen (up to three times a day) if she feels like she needs it. Her TMJs are still an issue. The last MRI showed the right side looks a bit better, but the left side still has mildly active arthritis. Today, we found out that after almost eighteen months of clear eyes, she has mild inflammation in her left eye once again. So Pred Forte eye drops are prescribed (twice a day), and we go back in two weeks to see if that clears it up.
So what does a mom do when the road ahead looks like it may be more challenging? I admit that it's easy to let the worry take over---worry for Anna's future, worry that new joints are being affected by arthritis (it was a lot more "comfortable" when we were only dealing with only the knees and TMJs, with the eyes thrown in for good measure). But as I've struggled to know the appropriate response, I've been remembering a verse that I've been meditating on for several months: "Be patient in trouble and keep on praying." (Romans 12:12 NLT). I've been hearing songs on the radio that constantly remind me that I can trust God, that He is with us always. There's an older song that keeps coming to mind---a song from Casting Crowns, called "The Voice of Truth." I know that we "are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places." (Ephesians 6:12 NLT), so whenever I hear the whispers of worry and doubt, I am going to choose to listen to "the Voice of Truth." (link to video below)
Besides the lyrics of this song, what has "The Voice of Truth" been telling me over this past week when thinking and worrying begin to take me to mental places where I don't want to go?:
"For you know that when your faith is tested, your endurance has a chance to grow." (James 1:3 NLT)
"But the Lord stood with me and gave me strength." (2 Timothy 4:17)
"I have made you and I will carry you; I will sustain you and I will rescue you."
"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you, He will never leave nor forsake you." (Dueteronomy 31:6)
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25
And especially this week (I love the visualization of walking through water that seems to be getting deeper and deeper---and knowing the God is with us in the midst---sometimes that's just how life seems) From Isaiah 43, beginning with the second part of verse 1 (bold emphasis at the end is mine, because that verse and those words seemed to jump out at me when I was reading this passage):
“Do not be afraid, for I have ransomed you.
I have called you by name; you are mine.
2 When you go through deep waters,
I will be with you.
When you go through rivers of difficulty,
you will not drown.
When you walk through the fire of oppression,
you will not be burned up;
the flames will not consume you.
3 For I am the Lord, your God,
the Holy One of Israel, your Savior.
I gave Egypt as a ransom for your freedom;
I gave Ethiopia and Seba in your place.
4 Others were given in exchange for you.
I traded their lives for yours
because you are precious to me.
You are honored, and I love you.
But He's also reminded me of the verses I found back in 1999, from 2 Corinthians (NLT):
3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
So we gather up our courage, hold tight to our faith, remember that we are precious to God, keep praying in trouble, and know that God is guiding us, and that His timing is perfect. I'll update again soon---Anna has an appointment with the Lancaster Cleft Palate Clinic people after Thanksgiving. We'll see what they say about Anna's active arthritis and the time frame for orthodontics and eventual jaw reconstruction.