Makenna (and family)’s Story

Site created on March 5, 2007

Makenna's story began on September 21, 2004.  Born with two rare brain disorders, she defied the odds in every way.  She smiled through nearly 10 years of "disabilities", seizures, surgeries, and more.  We knew that her story wasn't over even when she went to Heaven on August 20, 2014.  What we didn't know was that our medical journey was NOT over and we now face a whole new side of things with our son Micah.  But truly, this site has never been just about Makenna.  It has been about all 5 of us.  Matt, Marianne, Micah, Makenna, and Marlee.  This is our journey.    

Read more about what started as "Makenna's story" by clicking "My story"

Makenna Eden was born September of 2004. She had many developmental delays that were unexplained until uncontrollable seizures led her to be diagnosed with Cerebral Folate Deficiency in the summer of 2006. CFD is a disorder in which folic acid is not absorbed into the spinal fluid and brain. Folic acid is necessary for a brain to function normally. She also had areas of her brain called Cortical Dysplasia that are areas that never fully/correctly developed. Both disorders cause seizures and developmental delay.

Because of her intractable epilepsy (epilepsy that cannot be controlled by medication), she has had 4 brain surgeries all in 2007 (2 in March, 1 in April, and 1 in August) to attempt to stop the uncontrollable seizures (she was having hundreds and hundreds a day). To make an extremely long story short, she has had the parietal, occipital, and temporal lobes of the right side of her brain removed. After each surgery she thrilled everyone with her speedy recoveries. She seemed to developmentally improve the MORE brain that was removed!!


We knew this was not the end of her story.  We were CHANGED into different people!  Makenna taught us so much!  Her life here on earth taught us just how precious each and every day is with the ones that you love.  We are so grateful we learned this lesson early on as we have recently discovered our medical journey is not quite over yet.  Micah, our 14 year old son was struggling with grief just like the rest of us.  However, over the past year.....things began to surface that seemed less like grief and more actual medical need.  In early 2016.....we now find ourselves focused on another one of our precious children......watching them hurt....and praying for miracles.  We don't know what is going to happen but we do know that this story is not just about a little girl.  It is about a family.  A family that loves eachother so very much.  One of us is in Heaven and there is no greater joy to know that one day we will all be together again....with the ONE who created each of us.  We are the 5MJs......and we want to LIVE LOUD.  We want to tell Makenna's story, and now we are living Micah's.  But most importantly....we want to PLEASE our Creator and Savior Jesus Christ with our lives and how we live them.  We are and forever will be expecting miracles.  (journal entries date back to 2007 and are updated as often as possible)

MJ1&2 - Matt and Marianne Johnson - married July 17, 1999

MJ3- Micah Paul Johnson born September 11, 2001

MJ4- Makenna Eden Johnson born September 21, 2004 - went to Heaven August 20, 2014

MJ5 - Marlee Claire Johnson born September 27, 2007.

We are five individuals, but together we are one.  Designed by Him, for Him.  We are His Masterpiece.  We are the 5MJs.....forever.


 Dance - by Chris Land (for Makenna)

It wasn't long ago when you came into our lives that day. There was so much beauty, undenying in every way. And when we took your hand, We knew that God had a plan.

Then the trials came, unexpected and unexplained. There were so many questions, about why you had to go through so much pain. So we started to pray that the Lord would come now, come now and say...

Dance little girl dance. Dance until the sun shines all over your face. No more waiting, girl this is your day. Dance little girl dance. Dance little girl dance.

We whisper softly as we lay you down and give you kissses at night. Our hearts grow weary as we leave the room and turn out the lights. Lord, wont you be in her dreams . Lord wont you whisper, just wshiper these things.

Dance little girl dance. Dance until the moon shines all over you face. I have healed you in every way. Dance little girl dance. Dance little girl dance

Lord, please give us the strength to keep holding on, and we will keep on praying you will make her strong. But for now we will wait until that day, when she looks in our eyes, smiles and says: Momma, will you take my hand and we will dance hand and hand.

Dance we will dance. Dance until the morning fills up in this place. And all the tears, they're all wiped away. And all the worries, the've all been erased.

Dance she will dance. dance until the world stands all and amazed. And all the glory of the Lord shall be praised. And all the glory of the Lord shall be praised. Yes, she will dance. Yes, she will dance.

Newest Update

Journal entry by Marianne Johnson

It would be criminal not to acknowledge today. There are tears today: both happy and sad and some in disbelief. How could three years have passed? It doesn't seem possible.

I really don't want to write an entry today. Instead I wish I could give you all the gift that was given to us this afternoon. It was a book called Tear Soup by Pat Schwiebert and Chuck DeKylen.

If you want to know what we have been doing the past three years or technically the past one year that I have not written in this journal, you just need to read the book. If you have lost someone you love, are going through marriage issues......or whatever your pain......only you and a select few.....truly understand. I read out loud to the MJ's as if they were my students and by the end......all 4 of us were blown away. It hit the nail on the head .

Not writing on caring bridge and not being on social media right a purposeful decision I cannot speak highly enough of. You ARE what you immerse yourself IN....and it is amazing what you discover about yourself when the daily temptation to compare is no longer possible. I will probably return one day......but for's me.....and my mjs. And on the 3 year anniversary of Makenna dancing into Heaven.....there is nowhere on this earth I would rather be.

Forever Expecting Miracles,

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