Book Notes & Bible Writing

It’s Not You, It’s Me….

In about one hour from now, one of mine and my son’s favorite artists will be getting on stage for a concert in my hometown. The wheel chair accessible tickets my mom purchased for us to enjoy are being used by someone else. Someone else will enjoy the concert and hear the beautiful music that my son and I sing along to in the car. And that is life.

I have missed a great deal of events in my lifetime as a special needs mother. I missed the opportunity to stand beside my best friend as her bridesmaid at her wedding because I was pregnant and needed to be close enough to the hospital in case the baby came sooner than we planned and needed the Level III NICU. I missed attending the wedding of another childhood friend because my son had already been born and was two months in to his seven month stay in that Level III NICU. I’ve missed countless birthday parties, sporting events, dinners, you name it….I probably flaked out on it. It’s not you, it’s me.

More recently, I have just this week canceled an upcoming weekend at Spina Bifida Family Camp, tonight’s concert in my hometown, and most likely we’ll be completely reworking a family vacation we have saved for and planned for over the last 18 months. But none of those events are my number one priority. Serving Hayden and making sure he is healthy and safe is the job I have been called to.

I know caring for Hayden, and my other boys, is my calling. That is not something I have any doubt about at all. I know it’s a calling because God has equipped me for that purpose. The old me, before Hayden, would never have been able to endure and manage the life I lead now. That is how I know it is divinely appointed and orchestrated by God. He equipped me to fulfill His purpose and to use this life and Hayden’s precious life as a beautiful platform to share His love for Hayden, for me, for you. The old me would have loved to roll over, play dead and offer to the world every pity card I could dig out of my back pocket. “Is this fair?” “Why me?” “I don’t deserve this!” “What kind of life is this for Hayden?”

But God made a new me. By offering up His son, Jesus. Jesus went through something not fair that He didn’t deserve so that Hayden and the entire world could have a beautiful life. Jesus bore all of our sins so that we could be made new. And I completely trust in that gift. My number one priority is serving Hayden and my children. The most important thing I could ever do for my children is show them the One who gives life its purpose.

I hope that tonight, in Longview, Texas, Francesca Battistelli sings the words that bring me to tears every time I listen to them.

“Now I’m filled by a love that calls me to action
I was empty before, now I’m drawn to compassion
And to give myself away

That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heart
Living for the lost, loving till it hurts
No matter what the cost
Like you loved me first
That’s the motion of mercy, oh
God give me strength to give something for nothing
I wanna be a glimpse of the kingdom
That’s coming soon”
-Motion of Mercy by Francesca Battistelli
(I highly encourage you to listen to as many of Francesca Battistelli’s songs as possible. They all have such a wonderful message and she has a beautiful voice.)
I live this song everyday. I pray this song everyday. All I want to do is be a glimpse of the kingdom that is coming soon. It is coming soon. Because of His mercy, because He loved me first, I am now filled with His love and His compassion and I am blessed with an opportunity each day to give myself away to a purpose far greater than myself. And I don’t mean just to Hayden. I mean to God. I can dedicate each day, each action, each word, to Him. He has given me the strength and in all things my prayer is to glorify Him. That’s the motion of His mercy. He will change “the way and the why we are.” Let Him. Let Him change you and feel the joy from giving yourself away to something more than self. Jesus said in Matthew 16:24-26 NLT, “If any of you wants to be my follower, you must put aside your selfish ambition, shoulder your cross and follow me. If you try to keep your life for yourself, you will lose it. But if you give up your life for me, you will find true life. And how do you benefit if you gain the whole world but lose your own soul in the process?…”
I know that the mission handed to me is to use Hayden’s precious life and our family to show others Jesus. I don’t understand why this is the lot I have been given and I don’t need to. I’m not negotiating with our Creator over this. I trust Him. It’s not easy. But daily I’ll choose to take up my cross and follow Him. And if He’s not leading me to the Francesca Battistelli concert or to Spina Bifida Family Camp or to the social event of the year, I have to believe that He can still use me. He can still move in my heart from the PICU in Plano, Texas as my son is hospitalized again. He can move you, too. Ask Him. You’ll see.


  1. Linda matthews on November 15, 2015 at 1:18 am

    Thank you for sharing and reminding me how to live my life following Jesus

  2. Trisha Wells on November 15, 2015 at 1:56 pm

    So powerful, Johnna!! What a great message to remind us that it is NOT about us!! It is showing Christ in all we do. You and your family do that so well.

  3. Marie J on November 17, 2015 at 11:59 pm

    I Like franny too God bless

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