I can feel everyone’s eyes on me.
Watching as I navigate the insanity of real life that seems more like a medical TV drama.
I mean seriously… my youngest son, Titus, is born with a birthmark on his face. Now, two years later, because of that birthmark, I’m scheduling my middle son, Levi’s, brain surgery.
Literally thousands of people have followed our journey as we waited a whole year to find out if our youngest son had Sturge Weber Syndrome. During those prolonged days, God kept assuring me of the covenant he made with me, the covenant to lavish good on me, the covenant he sealed with his own blood.
Then we got the call I had dreaded. The news that sure didn’t feel like the gift of a “good” god.
But God gently taught my hurting, broken and desperate heart that His nearness to me is to my good. That this painful road is actually his mercy, his crazy grace, because He would be radically and tangibly present with us in a way we would experience no other way.
(You can read more about how God can be good in the seemingly bad HERE.)
And now another year has gone by and so, so much has happened.
Friends and family know, but I haven’t told you, my wonderful readers yet.
So here it is.
Our youngest son Titus, does NOT have Sturge Weber Syndrome and I want to scream it from the roof tops! It’s wonderful, fantastic, and still makes me shake my head at what could have been. His prognosis is great!
But Titus does still have malformations on his brain and they’re hereditary. And that has led to a year-long fight with doctors and insurance companies to get my other two boys tested.
Well, the results are in.
All THREE of my boys have these lesions on their brains (and my husband has a 97% chance of having them too).
Levi, my middle child… well, his lesions are huge, to the tune of a golf ball. Doctors say that if it keeps bleeding, he could lose his ability to comprehend language, and control the right side of his face and right hand.
He is completely without symptoms and all this would have gone undetected if not for his little brother’s birthmark.
We will be heading to Boston (a 2,000 mile trip) for brain surgery with the only pediatric specialist in this field. Please keep us in your prayers.
When All My World Feels like a Stage
There’s a lot of eyes on me as we process this new shock. A lot of folks wondering how I’m doing. Remarking how strong I am.
But I would be doing you a disservice if I let you go on thinking that, because it’s just. not. true.
Let me pull the curtain back, so to speak, on the depths of my heart so you see the real hero of this story.
There’s so much you’re not seeing.
You don’t see me when I’m panicking, when I’m taking my frustration out on my children. You don’t see me struggling to breathe in the middle of the night, as the terror of what I might lose sinks in. You don’t see me yelling at God. You don’t see me weeping in worship.
I’ve Been Trained for This
Recently, a friend asked me how I’ve kept my faith in all these trials, when so many of our friends have deserted the faith.
The short answer is, I haven’t always kept the faith, and God was the one that fanned that flame alive again.
So. much. mercy.
When I look back on it all, I can see that God has shaped me for this. Any strength you see in me, is coming from a lifetime of preparation for this moment. God has used every circumstance in my life to train me for this latest crisis.
- Parents that trained me to rightly handle the word of truth. Parents who insisted I understand the convincing evidences for the claims of Christianity. Parents that allowed me to doubt and wrestle and question the truth, because truth can stand up to scrutiny.
- A brother that insisted that to accept the truths of Jesus meant embracing the radical, sacrificial lifestyle of a Christ follower. Lip service is worse than disbelief. The gospel demands action.
- Countless mentors that poured into a dense, prideful kid, yet loved me anyway.
- A college education that helped me see the unity and wholeness of the Bible.
Then came the trials that broke me, to build me up…
- The heartbreak of a “failed” ministry that taught me, my identity can be in nothing else but Christ.
- Financial woes and marriage strife that gave me ample reminders that God will provide and sustain.
- The misery of my suicidal depression that showed me the depths of my depravity and sufficiency of Jesus’ death to atone for it.
- Another round of post partum depression that reminded me that only God can preform the miracle of heart change.
And then, of course, the last two years of uncertainty with our boys’ health which have brought on their own crises of faith.
Fairy Tale Faith
I can feel everyone’s eyes on me. People from all sorts of backgrounds and beliefs.
People that think religion is “the opiate for the masses”. People that merely patronize my faith.
Then there’s the people that have walked away from a faith they once claimed. Precious friends that for numerous intellectual and heart-breakingly real emotional reasons have denied the God of the Bible.
I’m not sure what they think when they see me still clinging to those beliefs. Crediting the amazing as miraculous. Trusting a God that would take us through all this suffering.
But please don’t believe that I’m living an unexamined life, following an untested faith.
I’m a doubter by nature, critical and questioning of everything. I have hundreds of intellectual doubts and still more agonizingly emotional ones. And they keep cropping up, over and over. It’s a constant fight.
You see, I’ve been at the place of desperately wanting to reject God, walk away, dismiss it all and just curl up in a ball waiting and hoping everything will just end.
And I tried that for a while.
Are You Being Intellectually Honest?
But God graciously showed me my inconsistencies, the intellectual dishonesty I was content to live with so that I could live life as an atheist.
The truth is, I’m hemmed in on all sides. When I try to run away from Christianity, there are two big things I just can’t deny or find a more plausible explanation for.
- This universe SCREAMS intelligent design. It’s a huge topic of course that I hope to write about soon, but start by googling the arguments about a “First Cause” and the “Irreducible Complexity”. I am confident that an intelligent design theory fits the evidence far better than a material only, random-chance view of our universe.
- There was a historical man who lived, died, and came back to life. The evidence for the resurrection is dang convincing. This article gives a decently brief synopsis of the indisputable arguments.
And because of these things, I’m forced to confront the claims of that man. Namely, He’s God, I’m his rebellious creation, and He has sacrificed himself to pay for the sin I just can’t fix or sweep away.
The ONLY other viable option I can think of is nihilism. (Radical skepticism, total rejection of meaning, knowledge, morality, and purpose. Yeah, it’s bleak.)
I can either bow in submission to the holy God that made me or crawl into the grave I’ve dug for myself. Everything else is a distraction, a delay of the inevitable, an avoidance of the real issues that demand my response.
Wrestle with me?
Guys, I’m no giant of the faith, no superhero for rock solid conviction.
Now you know my history of struggle. Like the hymn says, I’m “prone to wander, Lord, I feel it. Prone to leave the God I love!”
In a couple weeks, I’m going to hand my cherished son over to a brain surgeon.
And all the doubts will come screaming back.
“Is God trustworthy?” “Do I want to serve a God that might allow my son to die?” “Have I been lied to so I’ll keep conforming to the ‘rules’?” “Am I lying to myself to comfort myself?” “Is anything real?” “Can I ever know anything for sure?”
Friends, this life is a battle. I’m more convinced than ever of God’s nearness, faithfulness, holiness, mercifulness and realness. But it’s still a battle.
I don’t want you going through life distracted from the most important matters. Don’t leave questions unasked. Don’t live life unexamined. Don’t ignore the claims of Christ.
Hopefully by now, I’ve shown you I’m an open book and your doubts and struggles will not shock me. I’d be so honored to talk and wrestle through this life with you.
To the God that pursues me, despite my unbelief and sometimes downright rebellion, I will ever sing;
“Streams of mercy, never ceasing, call for songs of loudest praise. Praise the mount, I’m fixed upon it. Mount of Thy redeeming love.
Here I raise my Ebenezer (A stone of remembrance, a declaration that God has brought me this far. 1 Sam 7:12), Hither by thy help I’ve come.
Jesus sought me when a stranger, wandering from the fold of God. He, to rescue me from danger, interposed His precious blood.
Let thy goodness, like a fetter, bind my wandering heart to thee. Prone to wander Lord I feel it, prone to leave the God I love.
Here’s my heart Lord, take and seal it, seal it for Thy courts above.”
Benita Yocum says
I am so thrilled to hear that SWS is no longer a diagnosis for Titus! Prayers answered!! And it sounds like you put up a good fight mama for the health of his brothers. We will continue to pray for you and your family as Levi prepares for, undergoes and THRIVES after surgery. Our God is an awesome God indeed!
Hope and faith,
Thank you Benita! I think of you and your sweet family often! You were such an encouragement to me in those early days of fear. Many blessings to your family!
Hi Julie! Thank you for sharing. I just found your blog last night and am new to learning aboit SPD (my son was recently diagnosed).
I will be praying for you and your family during this time. A dear friend’s son is having brain surgery this morning so this post really stuck out to me!
I am looking forward to learning from your experiences. Thank you for putting them out there for us to see and relate to.
Oh goodness, last night!?! Sorry to overwhelm you with my crazy life! lol Please let me know if there’s any way I can help you on the sensory journey! And thanks for the prayers!
Your blog has been a blessing for my family; thank you. I will be praying for you and your sweet boys. May God uphold you all, even when you don’t feel you have the strength to stand. Blessings to you!
Oh that makes me so happy to hear! Thank you for the prayers!
Thank you for your blog and your honesty about how your struggles have lead you to a stronger faith. I have found the same in my life – our faith becomes much more real and strong as a result of our struggles. I am happy that your younger son does not have SWS. I will be praying for your family and especially your son as he goes through the surgery.
Thank you so much for your prayers! Yes, trials do strengthen us if we let God do the painful work!
Julie, I can’t thank you enough for helping all of us with the wonderful information you provide but also for sharing the deeply personal and spiritual struggle of dealing with these medical crises among other things. I can definitely relate to the spiritual side of going back and forth – you describe it perfectly . Thank you for sharing so honestly -makes me feel not so crazy 🙂 You’re an inspiration and have helped me so much with my son. I’ll be praying for you and your family! !! Hang in there!!
So glad we can be not so crazy together! So glad the site has been helpful to you! Yay! Makes work so much more enjoyable to know it makes a difference!