David and I went on a rare date night thanks to a dear friend who contacted me and offered to entertain our four for the evening. Yes, please. As we were driving home, I found myself putting together my thoughts as I talked to my best friend.
"It's just hard. Nothing on the horizon is going to change, and we have no idea how long our battle for Laura will be or what it will take."
You see, about a day after I posted my last blog, Laura relapsed. As the antibiotics wore off, the strep virus got back in the driver's seat and started motivating manic behavior. To anyone outside our family, it just looks like we have an out-of-control child that we refuse to discipline. For those of us who live with her when she's on antibiotics and the inflammation is under control, we recognize that we are trying to love a child through a manic episode that scares even her. Did I mention that this manic episode happened at the Christmas Eve service? Bless it. It was NOT a silent night in our row.
She had just started a new round of antibiotics (the pharmacist didn't give us enough medicine to even complete the first round), but the medicine hadn't built up enough in her system to see results. We were stuck in a waiting game as we closely watched her. Even in public, she couldn't restrain it, which is new. But I'm guessing this is a side effect of not having had to deal with the inflammation for over a week, and then suddenly dealing with the mental and emotional side effects of having a strep virus calling the shots again.
So healing will be a journey. And in my heart of hearts, all I want is my daughter to be healed and whole; but we have no clue what to do next and I really don't want to start another complicated health journey. The leaders in the PANDAS field are often doctors that are considered experimental and are not covered by insurance. The nearest ones that specialize in children are 3 hours away. Healing is a process, but we already have so many processes in progress right now. I want something to be easy, fixable. Something. Please?
My heart aches even typing this because I have friends whose children are struggling without a clear diagnosis. I have spoken with parents whose children have PANDAS who have not found relief with antibiotic treatment. So many unknowns. So much pain. It all feels hopeless when my eyes are not fixed on the Author of life, the Healer of all hurt, the Redeemer of my soul and sometimes the Redeemer of even my grief.
What can feel hopeless when I fixate on the problem suddenly becomes a light burden when I remember that the actual goal of my life and ultimately my daughter's is not physical wholeness but spiritual holiness. I can't control the virus that is coursing through her veins, but I can exercise forgiveness in my own life and repent for trying to fix Laura myself. I can't force my children to make mature decisions, but I can surrender to the practice of patience as I love them day by day, screw-up by screw-up. Because you know what? That's what my heavenly Father is doing for me.
As I've gritted my teeth and tried to make everything work, nothing has. And in my disappointment that I can't fix this (and SO many other things), I have no where to turn since I've been relying on myself. But God, rich in mercy, is eager to carry me, save me, guide me. The courage He has given my heart just in the last two weeks is a miracle in and of itself.
So we press on into the unknown, broken and needy, begging God to shape us into the image of His Son and to allow us to stay focused on DOING this journey well, regardless of the outcome, though we also ask that Laura's full health will be restored to her. On Friday, January 24, we'll be heading to Cincinnati Children's Hospital's rheumatology department for any help and wisdom they can offer as the strep infection often makes Laura's joints ache terribly. Would you pray for us? This has already been a journey filled with disappointment, but I know the Lord is up to something in our lives and that something is good. This day...the one with a child who needs discipling, the dog who needs walking, the daughter who needs healing, the homework that needs doing, and the house that needs cleaning... THIS day is the day that the Lord has made. We will choose to rejoice and delight in the One who never changes and never misses a beat even when we don't comprehend His rhythm. Jesus is our King, and we choose to trust Him today.