6 years ago we found out that Luelle was a beautiful little girl that had spina bifida. We had a lot of unknowns ahead of us. Many things that I thought I could hold onto were shaken. The year that followed tested us in many ways. As our world seemed to crumble, what sustained us was the one thing that remained unshaken.
I’m so thankful that God cleared the rumble in my soul and took away things that I had leaned on that I never should have. The process of letting go was painful. God loves us enough to chisel away things that ultimately will leave us wanting.
Through the years I had unknowingly started to believe that peace in life comes from health, people, and an easy life. I had started to look to these things for answers, confidence, and stability. When these things were not a given anymore it terrified me, but it also emptied me. This emptying helped me question where peace, stability, and meaning truly come from. It’s not my health, an easy life, or the people around me. It’s Christ and Christ alone.
What incredible joy, peace, and hope I have found in Jesus. Letting him be the only thing I cling to allows me to endure the pain and struggle in this life without terror and hopelessness. Because when health, people, or my circumstances fail me, God alone remains.
Once we find the Source of hope and life we can face whatever the future holds, no matter how painful. This verse comes to mind.
“I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” Philippians 4:12-13
The secret is Christ, finding our hope in Him alone. No person, amount of money, physical health, skill, or personal fortitude can bring us lasting joy, hope, and strength. Life reveals this as we go through hardships. When trials come, we will see these things fail us. I’ve seen my hope in the wrong things fail me. I pray that as I continue this journey, I will fight hard to not allow my confidence or hope to ever be in anything but Jesus. Every day I must choose to not let my gaze stray. Sometimes I start to feel confident in my own skills, in my possessions, in my relationships. These things are good and gifts to be enjoyed but not my foundation or hope.
Luelle, our beautiful light, you are such a gift. Your scars, our scars, are such beautiful reminders of the Hope that will never fail us. No matter what tomorrow brings, the Lord is will us and will never leave us.
Above all else, this is what Bobby and I pray for Chale and Lu. As they grow up in a world that clings to countless false foundations, we pray that they would hold fast to Jesus and know His perfect peace.
Our not so normal life... 
Hi Shelly, I came across your blog at some point and started following your beautiful Luelle’s story. I thought I’d share with you my Luella…. we also faced some unexpected struggles along the way. Luella had a seizure at 9 months old and has gone on to have hundreds more. Just before she turned 2 we got the Dravet syndrome diagnosis. We’ve had some really hard times but my faith has been strong and gotten me through the hardest times. I just thought our stories we somewhat similar and our girls too… right down to their names! Luelle and Luella! I hope you enjoy our story as much as I’ve enjoyed yours. God Bless you!
Thank you so much for reaching out and sharing your journey with me. What a gift our Lu’s are. My cousin has dravets and I know from watching her and her family that it is incredibly challenging. I pray that God meets you and Luella in all your moments, the painful, discouraging days of questions without answers, the long nights when sleep is far away, the sweet laughter and blessings that catch you by surprise, and all the moments high and low in between. ❤
Thank you so much! God bless!