Friday, January 17, 2020

Today she went to school.

That title looks so ordinary, but if you only knew how extraordinary it is.  Since last spring, we saw our daughter go from LOVING every minute of being at school to begging us not to make her go. Once there, every teacher described her as happy, intelligent, and kind. At home, her feelings about school where those of terror, rejection, and despair. Her brain on PANDAS was lying to her, twisting the smallest interaction into a gaping wound.

At the end of last year and the beginning of this year, we could motivate her out the door by reminding her of all the wonderful friends she has at school, of how safe her teachers are, of how many incredible experiences her school provides. Our school even has a facility dog-in-training that Laura takes great comfort in. Our reasoning made sense to her mind and so Laura would talk herself into doing the brave thing and going to school despite the feelings of anxiety. Sometimes she would hug and cling to me at the door, and then with tears in her eyes she would bravely walk to the carpool van and do the hard thing.

Fast-forward to this week. There was no force or reason on heaven or earth that would convince Laura to go to school on Tuesday and Thursday. No fear of missing out. No truth about how much she is loved and valued. No physical force. She was terrified. And she just. couldn't. So we did school at home. As a former elementary school teacher married to a former elementary school teacher, we know we have the skills to teach her academically what she needs. What breaks my heart is that the simple act of GOING to school was so incredibly healthy for her. To be brave and do the thing her anxiety tells her she can't means she is still in the driver's seat. To stay home seems like a surrender to this invisible enemy.

While I'd love to cherish the moments I get to delight in teaching my older daughter, her presence in my home is a vivid reminder that she is building walls that she is afraid to climb over. Before she left for kindergarten, I begged her to let me homeschool her. She is a fast learner with a sense of curiosity that is fun to feed. Now, I beg her to be brave and go to school, to place herself in positions where she may not be in control but is, beyond a shadow of a doubt, safe. To not trust her gut because it is poisoned.

But today she went to school. Her teacher lovingly affirmed her in every way she knew how. Her friends were kind, as I truly believe they always are, and she had silly stories and favorite parts of the day when she got into the van. She and her sister are giggling hysterically now as they create crazy skits and then record them so they can replay their latest antics. She is having a good day. No flares. A normal six year old. Today she went to school.

As a type-A, super-structured person, the Lord has placed me in a family that stretches me to discomfort. No two days with my beautiful special needs kiddos are the same. No expectations for growth are the same. Though my personality's strength means that I can provide clear expectations and safe boundaries, the amount of individualization in this family really makes my brain explode. Right now that intentional, loving care means that some days I homeschool my daughter through her PANDAS flare, even though every inch of my rule-follower self says that somehow I should be able to make her go. And on the days she willingly goes, we try to subversively reinforce how much she is capable of. The truth of the strength of her identity in Christ and our family, the truth of her physical strength, the truth of her intelligence, the truth of her ability to love and be loved. She is a powerhouse. Watch out, world.

Next Friday, we'll meet with the pediatric rheumatologist in Cincinnati. We'll see what treatments and answers are out there for her. We'll keep knocking on doors to find answers and hitting our knees in prayer until it is the most normal thing in the world to say, "Today she went to school." And in the meantime, we will be thankful for the good days like today.

It's hard not to be angry. Angry at a disease that keeps my daughter from doing what she loves and being who I know she is. Angry at a medical community that doesn't quite seem to know what to do for PANDAS. Angry that we can't just be done with difficult. And that anger is deeply rooted in fear. The fear whispers, "This will never end. This will drain every resource you have. This will kill every dream you have for yourself and for her. This will kill you and her." It takes every ounce of my faith to whisper back, "Fear is a liar. A liar. A LIAR."

And with that truth, my perspective is freed to remember what is true. God sees. He sees me and my daughter. He loves us. He will redeem our pain. He knows the pain of watching His own Son in agony. He is near to me as I weep brokenhearted behind the wheel because it's the only time I'm alone. None of this has escaped His sovereignty, and He is shepherding us with gentleness. And He has given us His people.

Thank you for praying. There are days filled with inexplicable joy and strength that we know are the result of the Holy Spirit working in our hearts by the prayers of His people. We've also seen Laura have so many beautifully good moments that it's almost a shock when the flares come and she can't stop the panic. Please keep praying and know that we are grateful to you for holding us up to the Father and sending us messages to remind us that we are thought of. As a result of your prayers, today she went to school. And we are thankful.

Friday, January 10, 2020

When there's nothing new in your New Year

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.