Saturday, December 21, 2019

What was lost has been found. And we rejoice.

I wish the story that I'm about to tell you were one that spanned 2 weeks and not 2 years. I wish it had had an easier solution, but I am beyond grateful to recall our history with the desire that it will encourage, educate, and motivate those who are searching for solutions to struggles that seem beyond hope.

Let's rewind two years. Our entire family of six was violently ill for much of the month of December. It's a twisted family tradition we have. Christmas break arrives, and one or more of our bodies break down. Sometimes we take turns passing pathogens around, and sometimes we all drop. In this instance, pretty much everyone felt miserable for a week or so. Breathing treatments were going around the clock, the meds were recorded in columns on the kitchen counter, and Curious George's Christmas movie played so many times that "Christmas Monkey" was by far the most sung carol that winter.  To the best of my knowledge, our littlest girl Emily was the only one who needed antibiotics to clear an ear infection. Everyone else pushed through to health on the other side.

In January we started a new adventure, having a college grad friend live with us until her wedding in April. The children loved spending extra time with our friend, but gradually we started noticing Laura pulling away from everyone. After a few weeks, Laura became blatantly rebellious and had daily physical outbursts. I would hold her in "safe holds" that I learned working with at-risk kids as a camp staffer. I never dreamed that I would need this knowledge to protect myself, my other children, and my child from herself. As David and I talked, we decided we had probably just messed up the birth order by having an older gal in the house, making Laura feel threatened. We assumed that when our friend got married and moved out, Laura's behavior would fade. It didn't.

My memory is vague as I remember that summer. I don't remember how frequent the outbursts were or what they looked like. Our months have blended into a giant mush in my mind. I do remember that Laura started kindergarten that fall. While she loved learning and her teacher and had a great friend in the class, she would come home absolutely drained and overwhelmed by the drama of daily interactions and the hurts of her fellow classmates. She hurt with every student that was hurting. Every. Single. One. Empathy is one of her strongest gifts, but this burden seemed so much more than a five year old should bear. She would feel anxious about who might be mean to her or to someone else and would have what could only be characterized as panic attacks.

Each night it was as if we could see a switch flip as we started getting ready for bed. In an effort not to feel the tremendous anxiety she was feeling, she would manically fight us for hours. If you've ever met Laura, you know that describing her as athletic is an understatement. She is STRONG. On the day she was born, I placed my hands under her shoulders to balance her and watched her support her own body weight in a standing position. The day. she was born. She hasn't slowed down since. Once her anxiety started causing nightly attacks, restraining her became the only athletic program I had time for. I developed serious abs and arm muscles as I tried to keep Laura from hurting me, the other kids, or herself. If you're wondering where Dave is during this frenzy, he's putting the other kids to bed and getting ready to spell me when my muscles gave out. The other children got used to a "tornado drill" style bedtime where they went to sleep in rooms far away from Laura's so they could sleep and be safe while she fought.

These battles weren't merely physical either. The whole time she would fight us, Laura would spew lies about herself. About her worth. About us. About God. About her siblings. About the lack of reasons for living. Lies. So many lies. We learned more about spiritual warfare last summer (the summer after kindergarten) than we had in 7 years of working as camp staffers. Every night, we fought a shadow of the girl we remembered as our daughter. She was scared. She was anxious. She was trapped. She was exhausted. But she couldn't stop fighting. At school, she would hold it together. At home, she would unravel.

When she would finally break down and collapse after 10 p.m., sometimes she would share the hard or hurtful thing that had happened that day that she thought was making her emotions flare. Sometimes she would just fall asleep fighting, and we'd tuck her in. Every night, David and I fell into bed completely depleted. No one else could watch our children in the evening. And there was little time to process solutions. We started play therapy for Laura at a local counseling center, knowing that what we were dealing with was far above our ability to parent well. We were drowning.

During that summer... just this last summer, friends surrounded us to pray. To pray over Laura, over us, through our home, for our family. To pray pray pray truth, protection, and answers for our questions. They texted us Scriptures, poured into our other children, and loved us as the Body of Christ. David and I lived hungry for the Word of God, desperate for the truth of His Word to revive us. And it did. We learned to put on the Armor of God. We learned to pray truth over our family. And we saw the Word of God do what only it can do: defeat lies with Truth.

When I shared with one friend who lived far away how destructive Laura's words had become, she promised to pray. The next day she texted me saying she thought Laura had PANDAS. She saw a picture of another child with PANDAS in an article she was reading, and I'm going to say the Holy Spirit told her, "This is Laura." She told me to google it and I found this article, and it was like reading a description of Laura.

Laura could NOT sit still at home. Always moving. Always doing. She used to love to read. Now she was constantly on the go. She would sob and cry anytime I left home, even if I was only going for a walk with friends in the evening. She didn't want to go to church. Didn't want to go to school (though she was happy once there). Separation was so hard. Huge mood swings with anger/laughter/panic/sobbing all mixed into the same 2 minute span happened nightly. It was incredibly difficult for her to sleep, and she would complain of pain in her knees, elbows, and ankles every night. We just thought she was having a growth spurt. All of these things fit the description for PANDAS.

Now you're probably thinking... Isn't PANDAS just an animal from Asia? Well, yes. But it's also an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In simpler terms, we believed it was possible that Laura had had a strep infection that December (almost 2 years ago) that had never been treated with antibiotics, which allowed it to go systemic. As hard as it is to believe, Laura had been so externally healthy, she had had no reason for any cultures to be taken for almost 2 years.

Now the tricky thing about PANDAS... Very few practitioners actually feel comfortable diagnosing it. It's not common. Though many know that it exists, we don't have a lot of research to support its clinical treatment. Looking back, I wish I had gotten more aggressive about finding a doctor who would at least try to give Laura a strep test even though her throat looked fine and she had no external symptoms. To make a long story short, the doctor I trusted was on an extended leave when we finally put all the pieces together. We waited for her to get back to her practice, and then begged for a strep test. She looked at all the elements we typed up for her and immediately said, "I think this could be PANDAS."

The rapid strep test came back negative, and I was so deflated. Knowing we could not sustain this lifestyle, we agreed with our doctor that an anti-depressant medication was probably Laura's best hope for overcoming the crippling anxiety that was taking over her world. At this point, just a couple of weeks ago, Laura had given up eating more than a few foods. She never wanted to leave the house, except to go a couple of places. She would have panic attacks at home before church or in the car after we got to church. Evening fights were more infrequent since we started therapy and had found ways to speak truth over Laura and pray over her with more intentionality, but we were broken as we watched her world get smaller and smaller. There were so few things she enjoyed and so few safe places and people in her mind.

As we sat down to supper a week ago Wednesday, I thought it was a normal night. It wasn't. A phone call from my child's doctor's office came in. The nurse on the line told me that Laura's strep cultures had come back positive, and she would need to prescribe an antibiotic. I almost laughed when she told me not to send Laura to school the next day. Goodness knows how long Laura had been walking the planet with an active strep infection. I sat back down at the table, wanting to cry and not hope too much. We rearranged our evening to pick up the medication and fought a long battle with Laura to convince her that her body needed the sticky pink liquid.  That she needed it desperately.

Somehow we got her to take it. Somehow we got her to bed that night. Somehow she braved taking the next dose in the morning. And then came the resurrection on Thursday night. After school on Thursday I drove all four children directly to the dentist. I anticipated Laura's anxiety would be high. She had already had several panic attacks about this appointment even though it was a routine cleaning. Taking her directly from school was a tactical maneuver on my part so I wouldn't have to fight her into the van. We arrived and even though she didn't want to go, she walked right in. No battle. No yelling. She was super snuggly in the waiting room, which seemed strange for her. Lately she trusted no one. She smiled through her appointment, shared honestly when she didn't like something, and handled herself like a brave, kind 6 year old.

Then we got in the car afterwards, and I dropped the bomb that we would be driving to a good friends' house for a Christmas party next. She was not happy to not be going home, but once we got there, she hugged her daddy, found a cookie, and started up a game with a friend. It was lovely. It felt normal. I spent the evening enjoying people I have come to love dearly. I checked on her periodically, but she was always engaged in some activity so I never interrupted. Lurking in the back of my mind, I knew from experience I would be paying the price for having taken my introverted, panic-driven daughter from school to the dentist to a large social engagement. I was prepared for her to have a major physical battle at home. I regathered my strength as I drove home, preparing to fight well. And here's where I start to cry.

We walked in the door to the house that night, and Laura saw that all the shelf-stable groceries were still all over the kitchen from my trip to the store earlier in the day. She said, "Mom, I know where all of these go. Can I put them away for you?"         Say. what?   

The other three children ran off to put on pajamas, and Laura and I talked about the party as she put away boxes and cans and I poured everyone's allergy meds and set out vitamins. She came over to the counter and took her antibiotics with zero fight and said, "Huh.... that doesn't taste as bad as I remember." Then she brushed her teeth and went directly to bed. No fight. Just sleep. "Goodnight, Mom."

I sat down on the couch with my baskets of laundry that needed folding and just sobbed. Laura was back. And that night was only the beginning. Though she used to be a morning person as a toddler, the last 2 years had been constant battles trying to get a very sleepy Laura up for school. That Friday morning, even after a late night at the party, Laura was up as soon as her wristband alarm vibrated. She was dressed, breakfasted, and had her lunch and backpack packed before I even got out of BED. She smiled in the morning. Had hugs for all of us. She liked herself and us and her life. And she's done the same thing EVERY. DAY. SINCE.

During all of this, I was trying to get Laura a referral to Riley Hospital for Children. I wanted the best pediatricians in the area to give us the best counsel possible to help Laura fully recover, though we were definitely on the right track. I spent several hours on the phone to finally find out rheumatology and all four neurology departments at Riley would not see PANDAS patients. They just won't. PANDAS just seems like too shaky a diagnosis for them to touch. And you know what, I don't even care.

My daughter came home a week ago Thursday. She laughs and plays with her siblings again. She sleeps soundly and enjoys reading. She has dreams and goals that involve her mind and her body. She no longer has pain in her joints. She no longer cries when I leave the house. When she's upset, she tells me immediately what's going on so we can find a solution together. She comes over and gives me hugs, just because. She's started eating a variety of foods again and even referred to my taco meat as "delicious." My daughter is home. Glory be.

The battle is not completely over, I know. She has established patterns of panic during her formative years (ages 4-6) that will take time and effort to continue to unravel. We will not be quitting play therapy anytime soon. The strep infection may require numerous rounds of antibiotics to finally conquer. But we have named our enemy, and we have tasted victory. We are not giving up.

In all the good things, I'd also like the record to show that for as many moments of her life as she is sweet, Laura has quite a few spicy moments. She's strong-willed, able-bodied, and loves a good practical joke. As I see these spicy habits resurface, I realize we still have a fallen daughter to disciple and love; but I'm also having flashbacks to her four year old self, who loved mischief and laughter and dismantling my stuff when I thought she was sleeping. And I can rejoice as I disciple her heart, unhindered by crippling anxiety and OCD. My daughter who was once lost is found. And I beg you to rejoice with me.

As I type this, I know others are reading this whose diagnoses have not be found, whose pain is still great and unexplained. My heart breaks for you. I wish every struggle had a solution as simple as a free antibiotic. I wish every child who struggles with anxiety, OCD, and depression could be lifted out of those struggles by drinking a pink liquid for 10 days. These last 2 years have, I pray, forever changed how we as a family respond to other families with chronic struggles. If I tell you I'm praying, know that I am. If I ask you if I can help run errands or shuttle kids, I mean it. When my arms were weary, others in the Body of Christ held them up; and I'd be honored to do the same for you. We stand in hope with you, hope for healing and answers. Hope for better days ahead.

I also know there are some in our community that had no idea we were struggling. At all. Laura's story at the time felt too personal for us to share with many. Even now, sharing it feels like we are leaving her exposed for the internet to ridicule; however, our desire for God to receive all the glory for her healing and for others who are struggling with PANDAS to find their own healing has brought us to this post. May you see God's grace in our story as we most definitely do.

And to those who knew about the long nights and the tears, thank you. You cared. Texted. Prayed. Called. Came over. You wept with us. And I know you rejoice with us know.

Our daughter has come home. To God be the glory.