So maybe this will be remembered as the summer of reading. I recently finished “Draw the Circle.” You’d like it. (It's predecessor is The Circle Maker). It's about praying for impossible things and that's always a favorite topic of mine. Last week, while on vacation, I finished “Blue Like Jazz." Faith chose it for our summer book club from a list of books teenagers should read before they go to college. Awesome. Because I'd been meaning to read that book for years. I don’t usually read in the car because I get sick, but this time I was able to stomach it on our drive to California, which was like a double gift. Because I was laughing out loud at his storytelling and then I had this captive audience in the car to whom I was re-reading portions out loud. Oh yes, they loved that.
We spent a day at Universal Studios, which was a blast but the rides are mostly the scary kind. I told my family that I am way too old to do anything I don’t want to do at an amusement park. So they let me sit with my book in a shady spot and read while they went on the scary ones. Mia noticed, “Mom, you’ve only been on two rides. It’s so sad.” I mean, I went on Jurassic Park and Minions. Minions was too much for me, so that pretty much sums up my ride tolerance.
“No no, this is exactly where I want to be, honey. Reading. Almost uninterrupted.”
We had left Reese back in Phoenix at Ryan House, which is a respite house for families with complicated children. I know that’s not the official description, but she stayed behind with her nurses, mostly because we cannot take her seizure medicine across state lines into California. It’s a long story, and the laws are stupid and the pharma industry makes me angry, so don’t get me started. But anyway, yes, it is very hard for us to leave her. Tears spilled down my face when I said goodbye. As hard as that is, it is probably healthy for me to take a break from being a caregiver. It took Mario and me a couple days before we completely relaxed. Because when you are a full-time caregiver, there is always something to be done. It is always time for something: food, meds, bathroom, therapy, water, repositioning. Ordering supplies, calling doctors. Always something. So I guess I'm not always conscious of it, but my mind is always thinking of what's next.
When I turned that part of my brain off and just sat and read my book, it felt really weird and good. That was what I really wanted and needed to do. I finished Blue Like Jazz between the drive and the Universal Studios shady spots. It was really good. If you’ve read it, I’d love to discuss it with you. I’ve heard it’s controversial and I’m not sure why. It’s the guy’s life story. I mean, can’t we let him have his story?:)
Mia chose for us to read “Let’s Be Real” by Natasha Bure for our book club. (In case you're confused, I started weekly book club meetings just with my high school girls and me. We read and discuss.) I’ve only just begun this book, but I’m pretty sure I’m not the target market for it. But Mia is and she’s loving it.
This week I’m reading “Nothing to Prove” by Jennie Allen. All by myself. Here’s the thing about books and me. I love to read, but I never allow myself to read just for fun. It’s like I have to be learning and growing and being inspired or else I feel like I’m wasting time and I feel guilty. Am I the only one? Maybe it’s part of the caregiver mentality. Too much to do to waste time. If you’re a therapist and you know what’s wrong with me, feel free to comment.
In Nothing to Prove, the author asked me (well not me personally, but the reader. You get it.) to write down answers to these questions at the end of a chapter called “No Longer Afraid”:
1. What is the worst thing that could happen?
2. So what if that comes true?
3. So what happens because of that?
4. So what happens because of that?
When you reach the end of the ‘so what happens,’ there lies your greatest fear, the one that keeps you in bondage. When you can name that, consider this:
5. Would God be enough for your greatest fear?
It’s not hard for me to come up with the answers to those questions.
1. We lose Reese
2. My heart would be broken
3. I would miss her and I'm not sure I can handle the pain
4. I would be sad for the rest of my life, and it would be hard for me to be anything but sad.
So there’s my biggest fear.
I know every parent fears losing a child. It’s the worst thing we can imagine. And I know that at any moment I could lose any of my children. But it’s different when doctors tell you that you will lose this child. It’s not a matter of if, but when. It’s a different kind of fear. It’s a day-to-day dealing with the fact that I love this child with every part of me but there is a very real possibility that I may have to let go.
I held her a little longer last night. Sometimes I hold her and smell her and think I never want to forget this moment. Mario asked why I was crying and laughing with her at the same time. It’s because I know that I love her so much that it actually hurts. Sometimes it’s a painful place to live—-between loving so deeply and knowing that it could end. But the beautiful part of it is that I know I’ve experienced a deep love. The kind that I think can only be found in brokenness, in mourning, in fighting for every little thing.
So I spent yesterday asking God, “Will you be enough? Will I be OK if my worst fear is realized?”
And the answer was yes. God reminded me how he has been enough for me, living with Reese’s terminal diagnosis, and He will be enough for me every day, no matter what comes. If I let Him. That’s been the key for me. He is enough for me when I allow him to be. When I ask Him to be. If I try to carry my pain on my own, it’s messy and ugly. But I have to believe that no matter what comes my way, He will be enough and He can be trusted. I have to believe that. Our lives roll along and sometimes we get a curve ball. That curve ball doesn't define us. But what we do next can. In my experience, I've realized that I choose whether I trust God in each situation. I choose trust or fear. I get to choose my perspective--look for the goodness, or stay worried and angry. But the even cooler part is that it is God who makes our hardest things good. Not just OK and smoothed over, but He promised us that he would cause all things to work together for our good if we love him and we are called according to his purpose. He makes all those curve balls good for us. If we allow it. I think that's why he added the qualifier "to those who love him and are called according to his purpose." Because we all know that we can choose bitterness and anger and worry, which are places where it's really hard for beautiful things to grow.
I've noticed something different about people who truly trust God. Their core identity is different from everyone else in the world. They are free to live and love and be in a way that makes people pay attention. When you meet someone like that, you know. I remember when I was a teenager, I was flying with my parents. The plane was dropping and shifting and bouncing all over the sky. I was white-knuckling the arm rests and reminding myself to breathe. My mom was reading a book in total peace. I asked her, "How can you not be scared, Mom?" She answered in a totally calm voice, "I trust God." I responded, "But what if we die?!?"
"I trust God with that too."
She didn't give me stats about plane safety or weather conditions or probabilities. It was just that she trusted God with our lives. I will never forget that. Her life is defined by trusting God. It is the core of who she is, so she doesn't worry about life and death. What a revolutionary way to live.
And you know what the truth is? Just because some doctors say Reese will have a short life does not make it so. The power of life and death is in God’s hands. Reese could grow up to be an old woman, and I don’t want to look back on my life and say, “Well, I sure wasted a lot of good days fearing death.” That would be a waste of a gift. That would be a stain on a miracle. I don’t want to do that. What does life look like, then, when we remove even our biggest fears from the equation? If fear is no longer holding us in bondage, then how would our lives look different? It seems to me, it is then that God sets us totally free. I know it's possible, but it has to be a lifelong journey toward fully trusting God to be enough. Day by day, moment by moment, thought by thought. No more fear.