“All of these lines across my face
Tell you the story of who I am
So many stories of where I’ve been
And how I got to where I am…”
– Brandi Carlisle, The Story
Our wrinkles, markings and scars define us. They tell of our history. Our stories. Whether sources of pride or memory, they are visible reminders of our past and our personal journeys.
Mackenzie is four years old. She has traveled farther than most of us will in a lifetime. She is a picture of adversity, beauty and hope. She is radiant. I hope she always sees herself as people who love her do–a miracle. Beautiful through and through.
She underwent an emergency liver transplant at 14 months old. This month, she will celebrate three years post-transplant. I had the honor of photographing her family in the fall as part of my commitment to the Give Ten Project — of capturing the unique bond her family shares. Her mother, my lovely friend Sarah, shares their story below:
What is significant about this month?
Mackenzie will be celebrating her three-year-transplantiversary on January 21st. It means so many things to us. Every time we get to celebrate it means we have had another year of life. The farther away from transplant means her chances for survival increase. Statistics usually go at 1 year, 3 year, 5 year and 10 year intervals. This is a big year because we will have made it one full year, for the first time since transplant, without Mackenzie rejecting her new liver. The more rejection episodes a transplant recipient has increases the likelihood of future rejection episodes. Her transplantiversary also gives us a chance to celebrate how normal our lives really are day to day. The Lord has really provided for us through out and the impact Mackenzie’s transplant has had on our every day life is minimal. And while we spend this day celebrating Mackenzie’s life we also remember that another family is mourning the death her their child.
Tell us about her teddy bear.
Her “Liver Bear” was a gift post-transplant from my sister in law’s mother. Her mother had the bear made at Build-a-bear, but didn’t close the back of the bear. When he arrived he came with a new pink liver that Mackenzie and I “transplanted” together, so Mackenzie would have a bear with a new liver, just like her.
Why did you want to capture images of Mackenzie’s scar?
I wanted images of Mackenzie’s scar because, for us, it means her life, literally. The older Mackenzie gets the more I worry about how it will affect her self-esteem. She received a full liver from a three year old and because she was just 14 months at the time they had to put in a piece of mesh fascia to close her abdominal wall (like for a hernia surgery) and that is why her belly protrudes around her scar. After we were released from the hospital her incision came apart at the center, which is why she’s has the triangle of scar tissue. When it separated there was nothing her surgeons could do, so we just had to keep it covered until it healed. She’s so young to have such a dramatic scar. And while it seems normal to us, it shocks strangers. Her friends and adults are curious and Mackenzie gladly talks about it. I want her to know the significance her scar holds and how beautiful it truly is.
How has her experience changed your family?
It changed everything. Mackenzie went from healthy to transplanted in 10 days. We’ve been through more than most families at this point. Mat and I had only been married less than three years when we were confronted with our first child’s mortality while I was 8.5 months pregnant with Kennedy. We quickly learned how to handle a crisis together we never thought imaginable. For our marriage it brought Mat and I closer to each other and in our relationship with Christ. I watched Mat put his own life at risk as he began to undergo a battery of tests in order to donate a portion of his liver. Mat stopped working so he could stay at home and care for Mackenzie and Kennedy. We worry about things a little differently. Mackenzie will forever have rely on a medicine to keep her alive, have a compromised immune system, a team of doctors in her life, and regular trips to the lab for blood tests. It’s also given us a new found appreciation for the normal day to day that we get to experience.
Mackenzie and Kennedy truly have an unspoken bond. Kennedy was born just four days after Georgetown gave us the go ahead to return to Hampton Roads. She was thrown into the chaos. Both girls have essentially grown up going to doctor’s appointments and to the lab for blood draws. They can sit and play “doctor” for HOURS. To them that is normal pretend play. I cried when I first saw the images because you captured their love for each other so well. They way they embrace each other and laugh together. Sometimes, its hard to know who’s the older sister as they are both so fiercely protective. When Mackenzie first rejected her new liver, around her one year anniversary, we ended up in the hospital for almost a week. Neither of them knew what to do without the other. When they were finally reunited the sat on the floor across from the other just staring and laughing. The joy they have with the other is overwhelming. It is my prayer that they always have this as they grow up.
How can we become organ donors or contribute to the cause?
Readers can learn more about Organ Donation and/or register to become an Organ Donor by visiting Donate Life America www.donatelife.net or the United Network for Organ Sharing (UNOS) at http://www.unos.org/. They can also register to become an organ donor on their drivers license. Readers can make a donation to Donate Life America at http://donatelife.net/give-to-dla/ or if they are moved, they can join us in making donations to Georgetown at http://www.georgetownuniversityhospital.org/body.cfm?id=1324 and CHKD at https://www.chkd.org/Giving/Donate/
Organ Donation Statistics
112,657 Patients Waiting*
62,648 Multicultural Patients*
1,800 Pediatric Patients*
21,354 Organ Transplants Performed in 2011
10,558 Organ Donors in 2011
*as of January 2012
To read more about Mackenzie’s story, visit her personal blog at http://mackenzielemn.blogspot.com