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Silver linings
playbook

Rare genetic disorder
teaches Milton couple
about loss, grief and recovery.

Mark Medici, an executive with the Cox Media Group, of which The Atlanta Journal-Constitution is a part, and his wife Annalee Medici, a former Miss America contestant, wanted a large family when they fell in love. This is the story of their first-born child, Olivia, and the lasting impact she had on their lives.

1

Loss

Mark: I remember the day. It was just the three of us in our daughter Olivia’s hospital room at Oregon Health Sciences University, high in the West Hills overlooking downtown Portland. Olivia’s nearly six-year battle with a rare genetic disorder was coming to an end, and we were beginning to come to grips with a stark reality:

My wife Annalee and I were about to lose our first-born child.

The day before, Olivia’s hospital room was filled with family and friends. Olivia was in and out of a restful sleep as the quiet whisper of stories, tears, kisses and hugs encircled her. Olivia’s soon to be 4-year-old sister, Eva, lay next to her. Eva was not old enough to understand the gravity of the moment. But the love Olivia felt for her sister was pure. Eva had no idea it would be the last time she ever saw her older sister. Throughout the day, I felt my anxiety rise. I had been fortunate not to have much death in my life. But as I observed the room, I knew this would be the last full day of Olivia’s life.

The next morning was ours to be with Olivia. I was sitting across the room from my wife and daughter, working on her obituary. Olivia was on Annalee’s lap and resting peacefully. Annalee was depleted from Olivia’s long battle but was still a loving and caring mother. I loved her so much in that moment.

From across the other side of the bed, Annalee gestured for the nurse to check Olivia’s pulse.

Annalee: A piece of my heart and my soul went with Olivia the moment she took her last breath. I was cradling her small, very still body against my chest. I knew the moment was near but I kept it to myself. That was my moment with my baby; a moment too fragile and evanescent for words. Her fading breathing began to pattern. I could feel and hear it. Shock began to set in and I quietly hummed her favorite songs. Never once closing my eyes for fear I’d miss her body’s last breath, I imagined I was at home with her all wrapped up in her beautiful lavender bedding. Her body relaxed and nuzzled up to mine, I whispered, “It’s OK, sweetheart, you can go.” She took one more shallow breath.

Through the wailing and the tears, I was silent and still. I didn’t want to let go of that moment. Because once I did, it would be gone forever, leaving only a haunting memory. One by one, family members filtered in to say goodbyes to their beloved granddaughter, niece, great niece and friend. For a split second I was able to climb out of my grief-stricken body to find a moment of clarity, and recognize how fortunate we all were to have this moment with Liv. We could touch her, kiss her, hold her precious hands and tell her goodbye. Not every family who loses a child gets that opportunity.

As we slowly walked out of the hospital, our families trailing behind, I locked my arm around Mark’s and lay my head on his shoulder. The walk felt different. We weren’t just “parents” any more. We were now bereaved parents. It was a foreign and disturbing feeling to walk away from my child, knowing I would not be coming back for her. After five years, 10 months and six days together, our time here on Earth had come to an end.

Mark and Annalee Medici with their older daughter, Olivia, and younger daughter Eva on Christmas 2003. Olivia’s developmental problems baffled her pediatrician, and the family did not learn she carried a rare genetic disorder until she was 3. Contributed photo

2

Grief

Annalee: Six weeks after Olivia died, I suggested to Mark that we participate in an eight-week group therapy session through Oregon Health Sciences University (OHSU) designed for grieving parents. I am a structured, annoying planner by nature. Learning how to survive my daughter’s death was no exception. I was going to survive. Even before Olivia died, we knew all about what the research said about couples who experience the death of a child; many dissolve into divorce. With my husband and living family, we would all survive together and intact. I refused to let statistics shape our life.

Mark was hesitant but agreed. I’m not sure Mark benefited from the sessions in the way that I did, but that was OK. I learned for both of us. It was the beginning of understanding that the grief process was going to look and feel very different for me than for Mark. The challenge was to respect each other’s way of grieving and healing, and not force the other person to hurry or slow down in the process. At times, I was scared because our individual healing was beginning to create distance. The one person who knew and shared the depth of my pain was the very person I wanted to escape because I couldn’t bear the ache of two broken hearts.

Mark: My recovery journey started two years before Olivia died. In August 2004, we received a positive diagnosis for Olivia’s genetic disorder, Mucopolysaccharide Sanfilippo Syndrome A, or MPS III for short. The disease affects one in 70,000 births and is always terminal.

Our bodies are constantly replacing used materials and breaking them down for disposal, but children born with MPS III do not possess the enzyme that allows the body to function normally.

Without the ability to “take out the trash,” Olivia’s body stored the used materials in her soft tissue. Very slowly over time, we learned from the doctor, Olivia’s body was killing her from the inside out.

Shortly after that diagnosis, my mother said something to me that stuck. We were in Durham, N.C., in a house we’d rented to be near Duke University, where Olivia was undergoing aggressive and experimental treatments that would not change her prognosis but might give her better quality of life.

My mother is a strong Irish German, as blunt as she is kind, as honest as she is loving — and she does not suffer fools. We were all sitting around the kitchen table during one of the rare moments when one of us wasn’t at the hospital with Olivia.

Mom was doing her best to support the two of us. In a quiet moment, she broke the silence of the darkened kitchen.

Someday, it may be years down the road, but someday there will be a silver lining to all of this.

I love my Mother dearly, but I was not in the mood to be uplifted. No amount of praying or silver lining was going to save my daughter.

From the day I walked out of Olivia’s hospital room, I have struggled with losing Olivia. Before we left the hospital, I asked Annalee if she minded if I went back to see Olivia one last time. I walked back into the room where her body was still lying and I hugged my daughter. I left a piece of me with Olivia that day. I don’t feel like I am as complete today as I was then, and I know it shows up to those closest to me. My friends and family will say I am different today. It is hard for them to find the right word; “Just different,” many will say. I know what they mean. I feel different, too. Annalee would tell you the word is “disconnected.” She is probably right.

I have watched the death of a child destroy fully functioning people. Annalee and I have spent the better part of 10 years in counseling to deal with the lifelong process of recovering from Olivia’s death. I truly believe the critical element of how we maintained our marriage is we both understand our lives are bigger than just Olivia, regardless of the broken pieces. At times that can be a struggle because Annalee and I are both easy targets for each other’s pain.

Annalee: The reality of grief is bitter cold. Grief is not friendly, forgiving or even kind. It’s debilitating and all-consuming. It takes everything from you if you let it — and quickly.

After her death, I knew I needed to immerse myself in something that would allow me still to share Olivia with others and foster my own healing along the way. I founded the Olivia Medici Memorial 5k Run/Walk the year after she died. Over the course of three years and three events, we raised $50,000 benefiting Duke University’s Pediatric Bone Marrow Transplant Family Support Program and the hospital in Portland. After receiving so much generosity and kindness while Olivia was undergoing treatment, the only way I felt I could genuinely thank people was to simply pay it forward.

Our first race drew 230 people. I remember folding T-shirts for participants ahead of the race and suddenly realizing that the sweet face on the front of them was my daughter. I felt overcome with sadness. Yet the activity of helping other families with sick children brought me some peace.

I kept a journal then, and found this entry from after the race:

“As far as day to day life goes, we’re struggling. We function, we go about our day and we move forward into life without Olivia. But it hurts. And it hurts really, really bad. What makes losing a child difficult, is that it disrupts the normal pattern of life. We spend all of our young lives planning for the future. We plan for college, for careers, for marriage, for children and for grandchildren. We don’t plan for death. We plan for life. And when a death occurs before a life has really ever even been lived, you feel lost, misdirected, misunderstood, empty, lonely, heartbroken and heavy. Mark and I are working very carefully, through our grieving, to nurture those feelings and pick up the pieces one by one by one. We continue to remain in therapy to help us through this most difficult year. We are progressing and we hope in time, our deep pain will ease. Life will never be the same as long as we are alive, but we will keep living that life. We will do our best to rebuild our spirits, to keep hopeful and faithful and embrace what we have now and what we experienced once.”

Contributed photo

3

Recovery

Mark: It’s Halloween 2016 in Atlanta. Blake, born two years after Olivia died and now 8, is bouncing around the house in anticipation of his annual sugar haul, while 13-year-old Eva and her best friend Amanda are trying to shrug off the allure of trick-or-treating now that they have reached the too cool eighth grade.

I have immersed myself in a last-second pumpkin carving project, but really all I can think about is Olivia. I am in the middle of my annual 45-days of mourning leading up to the anniversary of her death.

The recovery after losing a child is an everyday challenge. The simple fact is I think about Olivia every day. She is my daughter, my first child, and she is on my mind just as much as Blake and Eva. That said, these 45 days are exceptionally hard. Carving a pumpkin should be a celebration of the holiday season, filled with light and fun moments. But I am in a bad place as I chisel a skull and crossbones on an enormous white pumpkin.

Annalee and I have not had a good 2016 Halloween morning and 10 years after Olivia’s death I am frustrated with the pain I still feel around this time of year. I am also frustrated with my inability to compartmentalize my pain. I take some solace knowing it is not for lack of practice.

Photo: Annalee speaks to a room of friends and donors who helped the Medicis raise $20,000 for a family support program at Duke University, where daughter Olivia was treated for a rare genetic disorder.


Annalee: My heart was shattered into a million and one pieces the day our daughter died. I have spent the last 10 years repairing and rebuilding it. Every piece has slowly been glued back together. It’s not pretty but it is whole. Much like a vase that was shattered, you can glue the pieces back together again and rebuild the vase. It doesn’t look the same and certainly doesn’t feel the same. But you can still use it. You can fill it up and you can put flowers in it again. This is my heart.

It’s different now. Learning how to walk through life after losing a child is a constant struggle. My hope was never to do it beautifully or with perfection. Our journey is a beautiful disaster. It really is. But it’s our journey. As parents, we have experienced the saddest, most heart-breaking loss and the greatest joys intertwined. We have fallen off course in the midst of complete wreckage. And the joys of our children, Eva and Blake, have pushed us to climb and sometimes even crawl back up again. We haven’t “survived” the death of our daughter — but we are “surviving.”

Mark: Nov. 12 was the 10th anniversary of Olivia’s death. Annalee and I organized another fundrasier for Duke’s bone marrow transplant program near our home in Milton. We’ve raised $20,000 so far. We’re amazed and humbled by the generosity.

Today, a fine fall day in early November, we are at the Georgia Tech natatorium watching Eva grind through a grueling 1,650-yard swim. Blake dodges in and out of the bleachers without a care in the world. I was once a distance swimmer and I am watching Eva’s every stroke, leg thrust and turn.

I know the mind of a 13-year-old is an unpredictable place but I wonder if she ever thinks about her older sister. Does she miss her? Does she know she never has to compete for my attention? Does she know she is as loved as Olivia?

As Eva turns for the home stretch, she reaches for another gear and crashes into the time pad on the wall. She lifts her goggles and gazes at the score board waiting for her time to post. Exhausted, the look on her face shows me she is not pleased with her result. But I am because she swam hard.

As we head to the parking lot, I put my arm around Eva and tell her how proud of her I am. I tell her how much I love her. I don’t say it out loud, but I think of how proud her older sister would be if she were here.

I am also proud of myself and Annalee as we head home from another long day of swimming, fortunate to have one another on our personal and joined journey with our two incredible kids — and an angel in tow.

Nearly 13 years have passed since our “silver linings” moment with my mom in that dark kitchen in North Carolina. The intensity and honesty of the conversation is a constant reminder of how much life there is to live, and just how many lives depend on me being present in my family’s life.

Annalee: Today, I continue to listen to my heart and what I need on my constant road to recovery. Sometimes it’s as simple as the urge to say Olivia’s name out loud. So, I wait until the house is empty and I call out to Olivia upstairs. I know she isn’t coming, but I sure like the way it sounds in our home where her family lives on.

As I reflect on the story Mark and I have written and compile my final thoughts, my eyes are filling with tears. Not because of our heartbreaking journey but because of a text message I just received from Eva. She sent me pictures of things she is putting on her Christmas list. Her text reads, “Christmasssss and clothes….lots of clothes.”

I am reminded that in the days leading up to the anniversary of her sisters passing, life is still good. So we stay strong, we hold on and we have faith in the silver lining.

Behind the story

Mark and Annalee with their daughter Eva and son Blake at their home in Milton. Eva, who shares a birth date with Olivia, was born before the family knew there was the potential for her to also carry the same fatal genetic disorder as her sister. Eva did not have the disease. The Medicis understood they faced a risk having more children, but son Blake, now 8, was also born healthy.


ABOUT THE STORY

If losing a child is the most difficult challenge parents can ever face, then writing about that experience can’t be far behind. Mark and Annalee Medici told me they wanted to write about losing their daughter, Olivia, to help other parents and families. They were equally candid about how their grief and recovery were intensely personal. There is no right way to grieve and no easy prescription for recovery, they told me. Indeed, when they began their journey 10 years ago, neither was certain their separate roads would lead them back together. They offer their account as a couple, but narrate it individually in alternating passages. While the details are raw, the message is hopeful. As Annalee writes, they haven’t survived the death of their daughter but they are surviving. As their editor, I thank them for the courage and honesty it took to share their story with AJC readers.

Ken Foskett
Senior Editor
personaljourneys@ajc.com


ABOUT THE AUTHORS

Mark Medici was raised in Seattle and is vice president of multi-market media for Cox Media Group, a division of Cox Enterprises, which owns The Atlanta Journal-Constitution. Medici joined Cox in 2009 after working for the Dallas Morning News and the (Portland) Oregonian. Annalee Medici is a Seattle native and majored in human development at Warner Pacific College in Portland, Ore. She was named Miss Washington in 1994 and competed in the Miss America pageant that year. The Medicis live in Milton with their 13-year-old daughter and 8-year-old son. The couple is grateful to Cox and the AJC for the opportunity to share their Personal Journey, and they hope their story reminds readers of the hope and love that children, past and present, bring to our lives.

ABOUT THE PHOTOGRAPHER
Ryon Horne is an award-winning filmmaker and video journalist. He joined The Atlanta Journal-Constitution 15 years ago and has been the company’s video and audio producer for eight years, covering breaking news, entertainment, sports and features.