Friday, March 20, 2020

Please pick the blue jeans

Does anyone else's clothing choice determine their level of tolerance for adventure? Like if you put on your sweatpants, you automatically cozy in for a long day of tea and books and fuzzy blankets. If you're wearing dress pants and a button-down then, of course, you won't be getting out the finger paints that day. That kind of crazy will have to wait for another day.

The last few days have been hard for everyone. I don't want to make light of the hard so many of you are experiencing. So many families like ours have autoimmune illnesses and need to avoid people, even the people we love most. So many families are dependent on an hourly wage and a predictable school schedule, and they have been robbed of those things they thought were the most reliable. Lots of you are extroverts, which means the next few weeks look bleak. Coffee shops are closed. Restaurants usher you out with a to-go bag. And playdates are not going to happen for a long time. It's hard. That word seems so inadequate, even trite. Decisions that used to be perfunctory are now matters of serious contemplation and prayer. It's a whole new world.

In the midst of this, one really trivial decision hits me every morning. What will I wear? What will I prepare for my day to hold? How will I be ready in every way possible to love my children and my husband, to serve and benefit my neighbor, and to not go crazy (it's the little things, right?)? I have an idea I want to sell you on: pick the blue jeans.

"What?!?!" you say. "I finally get to work from home and wear my pajama bottoms for 24 hours solid. Why would I wear blue jeans? No way." But give me a second to explain.

When I wear my pajama bottoms, I'm pretty engaged in my own comfort. What do I want to eat? What should I read? How can I get everyone to leave me alone so I can enjoy silence with this cup of coffee? What are my personal projects that will make me feel successful? I'm fully focused on pleasing myself, but what if it's not about me?

Right now we have the opportunity to do (and not do) a lot of things for the good of many... so that they might live. I'm just going to be honest that if I'm wearing my sweatpants my mind just isn't tuned in to the frequency of thinking that involves others. I am putting myself first and am unwilling to rise to the occasion because, in case you hadn't noticed, I'm in my comfy clothes and this day is about me. I am far more likely to snap at my children because how DARE they behave like...ahem... children in need of guidance. I am far more likely to snap back in disrespect to my husband because how DARE he interrupt my alone time to communicate with me about our shared life. I am far less likely to run across the street and take in my neighbor's trash cans or answer their messages because obviously I'm the highest priority around here.

And none of these responses sound very much like Jesus, who at the end of a very long day was approached by a group of children. His response humbles and inspires me every time I read, "Let the little children come to me and do not forbid them for such is the kingdom of heaven." It's time to invest all we have in others. These souls that need us to love them are HERE and NOW. We don't get a second chance to do this virus thing. So I'm putting on my old blue jeans. The ones with holes in the knees that I so often use for gardening because I want my exterior to match what is going on in my heart. I am willing to do whatever is necessary in this moment, and how things (including me) look matters so much less that what they truly are. I'm here, and I'm ready to be poured out.

I am willing to drop dinner prep to answer a struggling friend's Marco Polo. I am willing to take a walk with the dog and the child who just canNOT handle the indoors another second. I am willing to use my evening alone time to plan for the next day so that our minds are kept focused on what is true, beautiful, and interesting. I am willing to pick up groceries for an elderly neighbor, even if that means showering before and after I make the delivery. I am ready to offer ideas and educational assistance to any friends who may feel like their creativity is buried under the weight of this difficult moment. I am willing to give up my quiet time to hear a child share their heart about all that is happening right now. I am willing to stay home far more than I ever thought possible and even stay six feet away from my dear friend at the grocery store because doing the right thing doesn't have to feel right to be right. There's critical intentionality to this moment, and I don't want to miss my opportunity to be a light.

And please know that all this pouring out would be fruitless and pointless if my heavenly Father weren't pouring into me with His Word and His Spirit. I would just end up depleted and cranky, probably wearing those sweatpants and locking the door to my room. Wearing my blue jeans means I'm gearing up for each day, trying to wake up before my children so I'm ready to respond and not react. It means I'm putting on my armor, and I'm entering the day ready to fight for what is right and not just what is comfortable. And let's just be honest, I'll most likely be declaring a comfy day soon because I'm just as human as the next guy and Sabbath rest is a part of our plan, for sure. We're on day six of this crazy here with no end in sight. Today I'm hanging a lot of my hope on the promise that we are not to grow weary in doing good, for at the proper time we will reap a harvest IF we do not give up.

Just because we aren't going out doesn't mean we are giving up. So pick the blue jeans, preferably the ones that you are willing to get messy... because we don't know what tomorrow brings and we're all rolling with the punches. And even if they don't get muddy dirty because all you did today was play a six-hour game of Monopoly, maybe those jeans will remind your heart to chose the hard work of sacrifice over the enticing promises of selfishness. Because it's not about me. And it's not about you. It's about us. You, my friends, are in my thoughts and my prayers. Our family fighting alongside you (from our house or at least six feet away) and rooting for all of us. So.. please... pick the blue jeans.

Saturday, February 22, 2020

Where we are now

If you wondered where we've been, we've been in detox. Gluten and dairy detox. Having now experienced it, I have no idea how Benjamin functioned for the entire month of January when he went gluten free (He was already dairy free.) in preparation for his appointment with Dr. Hulseman. Ben is now my hero for having survived that month, and I'm completely ashamed I asked him to do anything but breathe and eat for those first two weeks.  I'm just starting to exit the fog and am noticing benefits in my own mind and body. The last three days I have woken up in the morning with more clarity and energy. Laura has also had more infrequent flares which is HUGE! Grateful to have done this alongside Laura and Emily although I'm pretty sure Dave would rather not have had all three of the women in the family simultaneously detoxing. It's be a real treat for him.

It may be counter-intuitive and a sign of mental instability (probably both), but whenever I feel sick, I take on massive projects and get things done. Pretty dumb, right? When I get a head cold, I clean the garage. When I'm supposed to be resting, I'm reorganizing bathrooms. It's a super power that makes David roll his eyes and brew the tea for when the inevitable crash happens. As my body detoxed last weekend, the project bug bit me. Hard. In addition to working on the fifteen projects from Dr. Hulseman, I felt like our physical environment was working against me. I'm a bit obsessed with efficiency so as long as I felt crummy, I thought I might as well streamline some things.

I went through the pantry and put all the gluten and dairy free snacks at easy reach and gave away food that I knew we wouldn't be able to eat for a long time.  Even though Caleb and David eat what they want when they're not at home, there turned out to be a tray of ingredients I knew they wouldn't eat unless I prepared them (and preparing two entrees per meal isn't in my abilities right now). Dave distracted the kids while I threw out or got rid of foods they like that aren't great for them and then took them out of my hair that evening so I could start another project.

The dreaded closet under the stairs. Yep. We have one of those. It started out as a coat closet/craft closet/party supply storage and then morphed into the place we throw large awkward items we feel like we need to save. As I've reflected on how to give kiddos who need a sensory break a true rest from the bustle and fun that is our home, that closet kept coming to mind as a space in our home that we just weren't using well. It's the drawback to having an open concept house. Sometimes it's so open, that there's no where you can escape the crazy. So I bit the bullet, got rid of over half the coats that we don't use anymore, decided no one needs over a hundred gift bags, and re-prioritized what we really wanted to save based on the fact that I want to live in the all the spaces I've been given. Not store stuff. The kids were thrilled.

Though I intended it to be a space for Laura to unwind and do crafts or for Ben to sit and color, they have turned it into a dance studio, a band rehearsal space, a house, an art studio, and (my personal favorite) a fort that must be defended at all costs. It's amazing how inspiring empty space can be. As I left a huge pile of our unneeded things at a local resale store, it hurt to let go; but the knowledge that the space has been far more used in the last week than in the seven years we've lived here is energizing. And the physical sign to Laura that we are trying to meet her felt needs has yielded good fruit. It's not a place we send her. It's a place she chooses to go to when her anxiety flares and she just needs to draw and to sit on the over-sized dog pillow we bought for them to enjoy in there.

So despite the fact that we are far from out of the woods, actual important steps are getting done as we seek to heal as gently as we can. In addition to the purging, I had the opportunity to attend a Google talk with Dr. Hulseman for parents of children with autism, addressing a lot of my questions and giving some of the science and theory behind what she does. Super empowering, and I now have pages of notes that give me confidence that the steps I'm taking are helping. We're continuing with specific probiotics, omega-3's, omega-9's, and vitamins which the kids have taken like champs. These are LARGE pills, but they take them without a fight. Baking soda and Epsom salt baths happen every/every other night depending on the child. And I even managed to follow a crazy complicated protocol that was necessary to send some samples to a lab. Grateful.

We also had our home tested for mold by an incredibly kind, knowledgeable biochemist. This is where my story turns a bit less victorious. The air upstairs is safe. The air downstairs is very safe. Even the walls of our home were cleared, but the crawl space has active mold growing and a lot of moisture issues. Last week was filled with contractors coming over to give estimates as well as professional opinions about how it should be handled. Though mold in a crawl space is pretty normal, it would appear that our family has a special sensitivity to it. Can I just be a gigantic two year old for a second and gripe that I do NOT want to spend all our savings remediating mold in our crawl space, installing a dehumidifier and sump pump down there, and digging a trench through the back yard so we can move the water away from the house? This is not a fun kitchen remodel that we get to show off. This isn't an educational RV trip. This isn't a shopping spree at a used book store. It's just boring and messy, expensive and very necessary.

As we wait for all the estimates to come in and watch the money drain away, I realize how much of my faith is in my bank account, how much security I place in having savings and resources. I'm not knocking having an emergency fund, but this week I'm living with the painful reality that the emergency fund is for actual emergencies like this one. I should have been walking in gratitude this week. Instead I've been a rotten, spoiled child who is mad that God gave her His resources and now wants to use them for her and His children.

This morning, I was reading In His Image by Jen Wilkin as part of my community women's Bible study, and the passage on God's character trait of "Goodness" ended with this prayer prompt: "Ask [God] to help you trust his goodness in your current circumstances that are not as good." Yeah. I should do that. Because all the fear and anxiety that are bleeding out of me are clear indicators that my trust has not been in the unchanging Provider but in my own store of provisions. MY own store of provisions. That are there for only ME (and sometimes Dave and the kids). I'm struggling and surrendering multiple times a day because normally the lesson we want to learn the least is the lesson we need to learn the most.

Lord, those You love You discipline. You take away good things that you know aren't good for us to give us something better... Yourself. You place people in our life who have walked this journey so the enemy has no ability to lie to us and tell us we are on our own. You give us rest and Truth, sunlight and beauty. And we have so much. Thank you for giving us the ability to do what is healthy for our family. As we celebrate your goodness, God, please prompt us to live generously with the grace you have given us to steward. Quiet our hearts with Your love and restore to us the joy of our salvation that we may glorify you where we are now.

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.

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.