How dare I “joy”

These days have been hard. They stretch me to new limits, expanding my soul and eyes to new things- mostly painful things. Its always weird for me to answer the question, “how is Titus is doing?” Or when I need to make a “well check” visit for him. You know, “Um… well, he’s good?? I guess (awkward silence).” I mean, really, what do you say to that? “Well, he’s dying, but you know… We’re good!”

Last night, I dazed off until my husband interrupted and asked what I was thinking. I told him he didn’t want to know… it wasn’t very uplifting. When he pushed for the answer, I declared I wanted our normal life back, the one where two rambunctious boys drove me absolutely crazy, ran me ragged from sun up to sun down. But it’s gone… I can’t get back there.

I live in two worlds right now. The one where I’m grasping for any thread of control over this situation- just one ounce of human promise that I can step in and save my sons from this monstrous beast that is Batten Disease. This world where control is necessary for survival is easily understood by me and by others around me. Of course I feel this way!

But the second world I live in is this obscure world of joy. Joy… it’s a word Satan is trying to convince me to believe means giving up the fight or to define an apparent front I’m putting on to make people think I’m ok. I don’t use this word lightly. What does this even mean to have joy in the midst of this heartbreaking place, where we’ve been cheated of all we thought we should experience, receive?

My husband actually said these words to me the other day… “You seem happy. I like that.” My heart swelled and my mind reeled all at once! How dare I be happy! How dare I “joy”! I should be consumed with anger, sorrow, fear… surely those emotions will get us somewhere. I mean, doesn’t anger become a call to action? But here’s the thing. Happy is only a part of joy. I’ve found that Joy is being fully present in a moment, fully feeling the pain we are in and still finding the courage to claim thankfulness. Finding the ugly-beautiful. Fully feeling pain lends itself to fully feeling joy. I do feel anger, sadness, fear, but I also feel joy!

What God has given me rises above circumstances. My joy is purely based on the beauty of who God is, not the ugliness that has come upon our family. My joy is based on a God who is GOOD, LOVING. Who feels this pain with me. Who is in control with our best interests in his heart. This doesn’t change. It won’t change if a cure is found to save our boys. It won’t change if this disease takes them away from us.

So now I know, I can have joy even in this. And when I see lives changed, of people learning of deep, secure, safe love in Christ because of our story, I have joy. It’s a major perspective shift and… how dare I say what I’m about to say… Should I? Okay, well here it goes…

What if, just what if, this disease that we see as ugly through our wordly eyes would take on another look if we put on our Jesus eyes? Think about it. We see the path Jesus took to the cross, being crucified- an intense, horrific, painful death- we call that path good! GOOD! Really?? How could we ever call that good? Because we know the end of the story. We know that it had to happen that way for sin and death to be conquered. To loosen the grip of death it had around us and when Jesus came back from the dead, proving he could overcome all, yes, even death, and make all things good, yes, even crucifixion, then why can’t our situation be seen as good?

Because I know the end of the story here too. I don’t know exactly how it will play out, but I know Titus and Ely’s story will reach people who would otherwise not hear about God’s deep, intense love for them. I know Titus is being loved even now in ways I can’t imagine as his spirit remains, but his body fades. God is with him. I know that someday, Titus and Ely will be wrapped in the arms of the one who loves them most… Jesus… in heaven. They will no longer be bound to this world in horrible ways, but will be free! And, can I ask one more question? Could we ever grasp this understanding of His depth of love and goodness if our days were always sunshine and smiles?

So… yes, how dare I “joy”. How dare I find new breath in this situation.

“Awakening to joy awakens to pain…” Ann Voskamp
Having joy in this life does not numb me to the pain of it. I can’t tell you how many times I’ve cried… like hard ugly cries. How many times I’ve pleaded with God to change the storyline… Still do. How many times I’ve felt such deep pain when a timehop picture (curse that app!) pops up or a video is watched and I see the Titus I know is still inside. I believe Jesus felt every ounce of pain on that cross, as much as anyone else who was ever put to death in that dreadful way. And pain, yes, I feel it. To the core. And almost more so because I’ve opened myself up to fully feel – to seek the joy – the God moments and good in our situation. This keeps me going. It keeps me from numbing over, from checking out to protect my heart. Because I seek to feel joy wholeheartedly, it means I also feel pain wholeheartedly. I feel helplessness, lack of control, emptiness… And that’s ok.

I leave you with one more quote from a book I’ve been journeying through by Ann Voskamp. This is in reference as to whether our dark pain could actually be the genesis of new life… “Yes. And emptiness itself can birth the fullness of grace because in the emptiness we have the opportunity to turn to God, the only begetter of grace, and find all the fullness of joy.”

Here’s to new, full, joyful life…


Thanks for listening…



6 thoughts on “How dare I “joy”

  1. Bekah
    You are an amazing woman of God.
    I uplift you and your family, immediate and extended daily.
    Please stand fast and hold on to the joy.
    You and Danny cling to your faith and each other. Jesus will see us all through.
    Love you bunches.


  2. Thank you for sharing. Your husband mentioned in your last letter to love your children unconditionally no matter who they are or what they have done. This is at a time when I have felt sadness and frustration with my daughter. His words at a time when he has many concerns has encouraged me even more not to give up on her.
    Look at the joy and smiles on your boys faces in these pictures. They can feel that because they have wonderful, brave and loving parents. They must sense your joy and that makes them feel even more love and happiness.


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