I've been writing again. And yes, it continues to be raw. I think that's just the space of life I'm in right now. What space are you in? Cue adorable picture of my Hubby and my Wild girl. (She absolutely gets her sense of humor from him!) Glimpses like this of who she is completely and utterly rock my world. We've had some challenges these last few months - but underneath it all is our miracle. A child that is changing how the world views different. We're all different, by the way. And we all need someone who accepts us just as we are. I'm so excited to share with you this week's blog message on just that! We are better together, we are worthy of well, and we are made for more. Period.
Last week I came across an interesting article called "The Default Parent." In a mix of satire and truth, the author wrote about how one parent does it all - and the other just shows up. As I read it to my husband, I realized that his steady and stable is absolutely a sign that he is in fact not the default parent in our little home. He's been that parent though. Back in 2015, I caught a mosquito-borne virus and he took over everything. (I believe he did a great job at it too! But I don't remember much from that season. Sorry babe!)
Right now though, he's not the default parent. He isn't the one that makes and cancels and rearranges appointments. He isn't the one consoling one child or the other before or after school. He isn't the one that makes lunches or drops them off. He doesn’t get the phone call about Wild’s uncontrollable thoughts, or how Mild forgot his lunch. He has no idea what their sports schedule looks like from week to week – unless there is a performance or game. He can’t tell me the name of every therapist our sensory miracle girl sees. But, he supports me. And honestly, having someone listen to the space my heart is in after a long day (or days) with our precious kids is an incredibly huge blessing.
You see, special parenting is hard. Special parenting with a chronic disease? That’s even harder. While I’ve learned to compartmentalize the “hard” to moments and hours instead of days and weeks, I still need support. I need his support. To those doing this without a supportive partner or loved ones, Find Your Tribe. You need them. You need someone who understands where you are at (and yes, behind the scenes I’m working at creating a virtual space like this – but don’t wait on me).
Special parenting is hard; and at times it can consume you. So can pain. But when you have someone to share the brokenness and the bruises with – someone who will point you back to the simple truth that you are God’s Beloved even here – there is greater peace.
I have someone that I can talk to when I'm afraid no one else will understand. When I fear for our daughter’s long term mental health or how our son will do in a college preparatory high school (he’s eight – so really not the most pertinent musing) or if he’s doing too much for his sweet little bod. (I’m still so protective of this boy who almost died.) I have someone that I can show all my brokenness to and be loved, still. I have someone I can show all my bruises to, too ( like the one’s on my poor butt after a wonderful business event during which my body decided sitting is apparently not a great choice – though standing wasn't at my last event either... so, dear dear body, make up your mind!).
You might not need someone to show your bottom to – but what about someone who will remind you to still celebrate because the Lord God is your Savior (Habakkuk 3:18)? Do you need that person? Someone to remind you that this earth is not your home? I need that person more than any other, if I’m honest. Someone who gets that this isn’t it, while reminding me this time here still matters. I don’t want to be lonely in Heaven, so I best direct the way!
I am broken-made-whole again daily. I am bruised because I’m still here on earth. But y’all, my Papa calls me Beloved and that is my name. Who is telling you how much you are loved as you are as you work toward becoming the person the Lord made you to be? You need him or her in your life.
One of my biggest prayers when I first got unsettled as a special, chronically-ill special parent was to find women who would walk alongside me. This January, I’ll be passing what I’ve received along (the abundance of love He’s provided has been profound). I’m leading my first virtual book study. It’s called Hope in the Dark by Craig Groeschel (click here to grab your copy). We’ll be digging into God’s word and surrounding ourselves with like hearts.
Let me end today’s rambling with this – an excerpt from the YouVersion study based on our book:
“When you accept what God is doing, you don’t simply stuff your feelings down and let your heart die, even as you’re practicing your smile in the mirror and memorizing Bible verses. When you accept that God’s up to something that you can’t see or understand right now, you don’t just roll over and play dead and resign yourself to despair. No, you keep praying for a miracle from him unless he tells you otherwise. But you don’t pretend that everything is okay when clearly it’s not.”
It’s okay to not be okay. It’s not okay to stay there. I’m so hugely honored to be on your path – and to perhaps impart some life-wisdom on what’s it’s like to have hope no matter what. For me, that hope is magnified in support people, support systems and community. I can’t wait to be a part of yours.
Sending you so much love today.
I love sharing helpful resources! I may also make a small cut that keeps me fully caffeinated and my brain research-packed (because we can't serve from an empty well, and I really love collecting all the knowledge, understanding, and wisdom I can for both of us.) Always, I'll do my best to keep you on the right path, but I'm no doctor even though I play one at home - often - and mostly for myself. Life with CFS sure keeps things interesting! Life with you + CFS keeps things full of JOY, too.