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.

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