Monday, February 3, 2020

Hope when we need it most

Over a week ago, David and I took Laura to Cincinnati Children's Hospital to see what wisdom the rheumatology department (auto-immune specialists) could offer us. It was a 3-hour drive one-way that started at 6:30 a.m. so we could be to the hospital in time for our appointment, but we were hopeful that this could be the beginning of a new chapter for us. Every staff member and physician treated us with kindness, understanding, and respect; and I was impressed by how quickly we were seen, how much time our specialist gave us, and how they bent over backward to help Laura feel safe in a new place full of strange faces.

After physical exams, symptom surveys, and a long conversation; the physician we met with simply said, "You're probably familiar with what this could be, but we don't have any clear answers or treatments for what Laura is struggling with. Just keep treating the symptoms." Not going to lie to you, I cried. And couldn't stop. I couldn't even talk. Dave had to try to close the conversation and ask intelligent questions while I pulled myself together. I looked at my daughter, sitting in her chair like she wanted to hide from the whole world, watched her struggling to make it through the day while also confused by the fact that no one around her seemed to share her perspective of extreme anxiety. And I had no hope to offer her that this would get better. The ride home was quiet and painful. All three hours of it for all three passengers.

Two days later at church, a lovely momma asked me how we were doing, and I lost it. Completely started crying and could not stop. The heartsickness of watching my child struggle with pain every day while also powerlessly seeing her emotional and physical health deteriorate just kept washing over me. And by the grace of God, I broke down with the right momma who was not afraid of our brokenness... who hugged my neck, lifted me up to the Father, and has continued to pray for me daily as we live from one moment to the next.

And I know she was not the only one lifting us up. We hear you, family of God. When your card arrives at the exact moment that we need encouragement, when your text dings on my phone at the beginning of a challenging day, it is no accident or chance. It is God's very grace to us, reminding us that we are not alone. That someone else believes in the good work He is doing in and through us as we fight for our daughter, for her siblings, for ourselves to truly LIVE in freedom. God has answered your prayers with peace when we should be riddled with anxiety. Strength when we should have fallen apart. Creativity when our minds were numb. And help.

Last Wednesday, I took Benjamin to see a specialist who has helped a lot of kids with autism to feel better, live better, think better. Before I took him in, I found out from a friend that this particular doctor had also had success in treating children with PANDAS even though her office said she only saw children with autism diagnoses. So I packed up both children and sat in the smallest exam room I have ever been in to find some answers. She took one look at our family's medical history and said, "It's all related." To summarize, she thinks our family has genetic sensitivities to toxins that are a part of modern society. In order to lessen the inflammation in our bodies and work towards healing, I now have a 15-point list of things to read, do, or consider. But do you know what else I have? Hope.

This doctor was kind, sensitive, thoughtful, and knowledgeable. She gave us her full attention, put together a plan specific to Ben's needs (Laura will have an appointment on April 1.), and sent us home with a backpack full of hope. The struggles we now have CAN get better. Laura CAN heal. And we have a medical practitioner who is willing to walk this journey with us from start to finish.

So we're giving our kids baths in Epsom salts and baking soda every night to boost their magnesium. We're slathering their skin in coconut oil and boosting their fish oil intake. We're switching to a dairy-free, gluten-free diet for the entire family. And we're taking a swing at the other 12 points of the plan in the hopes that respecting an anti-inflammatory lifestyle for a year or two could help our bodies find healing and lead to a less restrictive diet for us all as our bodies detox and heal.

This week another sweet momma at church looked me square in the eyes and said, "I have so much hope for you!" My eyes just started watering again. As hard as this will be and as much as we will give up to walk this journey, we do have hope. We have a heavenly Physician who has also provided an earthly physician within an hour's drive of our home, and we are thankful.

And we are thankful for you. When cards arrive in my mailbox from people I don't even know or someone texts me with information I just happened to need, I am reminded that God doesn't need me. That all of the responsibility for Laura's health is not resting on my shoulders. God can heal her without my lifting a finger. I pray with all my heart He would heal her today, but even if He doesn't, He is good, sovereign, and kind. He has never left us alone, and His plans are for our good, for our daughter's good, and for His glory. We are bearing up for a moment. He is preparing us for eternity. And He has given us hope when we needed it most.

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.