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.