Mara. Sweet Mara.
I’d heard her name many times more than once. I took note this little girl was in need. Prayers were lifted from the pulpit and there were requests for even more prayer. Her name showed up in email newsletters, and there was a benefit too. For years, these opportunities to cross paths with Mara sat at my doorstep.
But friends, I have to be honest, my eyes were not wide open to little Mara’s reality until three days ago.
For in my own pain, I could not see. Our stories had overlapped on the timeline, and I was not able to open my heart to a set of circumstances remotely similar to what I was enduring, what I had endured. In those unknown years of overlap, my own heart had been broken and was spilling out wide from six years of trauma and chaos and pain from my own sister’s illnesses. Illnesses much different than those Mara faces, but in light of God’s bigger-picture story, similar enough.
So it was not until now, just three days ago, that my heart was ready to hear who Mara really was, who Mara really is. To hear Mara’s story, to open my heart and let a flow of compassion spill out for her, is necessary now.
The story of a daughter, a sister facing a battle, facing pain that has lasted for years. A roller-coaster story of ups and downs. And let me tell you, Miss Mara has endured some big rides. From her Caring Bridge site:
Mara was diagnosed with a rare genetic disease called MPS VI in 2006. After several years of complicated ERT (treatment to help slow the progression of her disease) failed to work for her, she underwent her first BMT in 2008 in which lead to engraftment failure. After a few years later of trial and error therapy, and lengthy ICU hospitalizations the decisions was made to undergo a 2nd bone marrow transplant at the U of MN. She is currently undergoing chemotherapy to prepare her bone marrow to receive her “new cells” on Feb. 7th 2013.
A moving video of Mara’s second bone marrow transplant on February 7, 2013, can be viewed here: http://mollyshieldsphotography.myshowit.com/maranorton
Today marks Day +27 since Mara’s second bone marrow transplant, and the best news yet came yesterday when Mara’s mom shared that “Mara is 100% grafted with donor cells!”
But friends, while this is the best news ever, this daughter, this sister, little Mara, is not out of the woods yet. For she is still in the hospital, and there is belly pain and nausea, chills and blood pressure to control. Her “adenovirus blood test from Monday came back 5x higher, and her CMV doubled again,” she is on antiviral IV medications in hopes they “will start kicking in soon, the IVIG infusions help her IGG go up to help fight, and her T cells start growing to help too.”
All the abbreviations make my head spin, and families shouldn’t have to know what BMT and CMV and IVIG and IGG mean. But Mara’s health? That’s what’s important. For the God of the Universe designed the inner-workings of all those abbreviations and all of those numbers and readings, and we can rest in confidence knowing He has Mara in His hands. For Mara is God’s story. He sent His son for us, in our suffering and in our pain, in our chronic diseased state, and He redeems, He heals, He restores. And Mara is in His hands.
But even in that glorious truth, we must not forget. Mara is not alone.
Daddy Christian and Mama Tina, Older Sister Catherine and Younger Brother Landin? These are the people that have been by Mara’s side. Her family. Mara, a sweet child of tender age, reliant on her family for care, for stability. I’ve never met Mara, nor have I met Daddy or Mama or Older Sister or Younger Brother, but let me tell you, they’re brilliant, they’re brave, they’re bold and courageous and they’ve fought a battle that’s been hard won. People can’t really grasp the breadth, the depth of little Mara’s health issues, the struggles she faces, the struggles they’ve faced, but the pit in Daddy Christian’s stomach has turned to a ray of sunshine in a matter of minutes more than once. Mama Tina has seen “glimmers of better,” and Older Sister and Younger Brother’s lives have been changed. forever.
The fact is, none of us would understand unless we stepped right into Daddy Christian and Mama Tina and Older Sister Catherine and Younger Brother Landin’s shoes. And since we can’t step into their shoes, we must, we must. also pray for Daddy Christian and Mama Tina and Older Sister Catherine and Younger Brother Landin. For these special beings have been placed in Mara’s life to care and support, to love and to nurture, and they need our assurance, His assurance, as well. For the days are hard and the road is long, but all five must know we care.
So today, thanks to Ms. Liz and Pastor Dan, and God who opened my heart at the perfect time, I fast and pray with hundreds others, in honor of Little Miss Mara and her dear Daddy Christian, Mama Tina, Older Sister Catherine, and Younger Brother Landin.
May they be healed, may they be restored. May these days seem short in light of life ahead.
Will you join us? It’s never too late. For we’re all on God’s timeline, and though we may be momentarily blinded to others’ pain because of our own, God is always ready to open our hearts at a moment’s notice, so we may lift others to His glory.
“Now, therefore,” says the Lord, “turn to Me with all your heart, with fasting, with weeping, and with mourning.” Joel 2.12
Mara’s Caring Bridge site can be viewed and followed at: http://www.caringbridge.org/visit/norton. The family is grateful for prayer partners along the way.