What do we do without Mary? Mary Rose Tully leaves us....

Today, I attended the funeral of one of my dearest friends, my consistent go-to reference person and my mentor, the infamous, Mary Rose Tully, director of lactation at UNC hospital in Chapel Hill, NC. I cannot really remember the first time I met Mary, but it seems she has been a part of my life since I moved to North Carolina. Mary was totally beloved by all who knew her in a way that crossed all boundaries. I have been awestruck by just how much impact she has had on just how many people. And, most likely, the majority have not voiced their admiration or we don't know how to find them or most importantly, the thousands of babies whom she has helped, are more or less, speechless.

The thing about Mary, for me, is that I was so in awe of her, that I often missed opportunities to be with her. From the beginning, when I was a lowly La Leche League leader (at least in her eyes, I believe -- after all, she did in fact begin her own group called Nursing Mothers of Raleigh, which I cannot help but think was because she did not buy into LLL!) I would see her at "The Art of Breastfeeding" conference in Chapel Hill and she was so darned impressive and so incredibly smart, that I did not dare gather round her or her followers. I would watch from a distance. When I ran into her at international lactation consultant conferences, it was even worse, because she was then surrounded by the superstars of lactation and I just didn't feel adequate enough to engage with her or them. I would hug and kiss her, and run off instead. Regrets.

In 1995, my then youngest son of four, Gregory drowned and my family turned into gruel. I did not know Mary then. The last time I held my son alive, was when he toddled into the friend's house we were visiting in Long Island, jumped into my lap and nursed. He then went outside with the older boys to play, but instead, he wandered into a cold swimming pool and drowned in his yellow sweatsuit and multi color toddler shoes. Somehow, in the depths of my grief, I held onto that blessed nursing moment and began thinking that I needed to ensure that all babies had the same gift as he did. I would need to do more than I could as a LLL leader to make that happen. I wanted to become a lactation consultant. I called Mary Tully at Wakemed Hospital in Raleigh to ask for her help. In truth, she was not all that encouraging. In retrospect, I suppose she had a feel for what a complete and utter mess I was and wondered how I would cope with all the studying and have the stamina for the long and trying exam. Be that as it may, I persisted and she explained all the prerequisites and hoops I would need to jump in order to sit for the exam.


By that time in my grief filled life, I was trying desperately to become pregnant again. I felt that in order for my sons, my husband and most of all for me to go on, I would need to create life in the dark hole of death in which we lived. I attended a class that Mary Tully and Mary Overfield (fondly referred to as "The Marys"), were offering at Wakemed. It was a five day review course that pretty much guaranteed that you would be prepared enough to sit for the exam. It was nearly impossible for me to stay focused that whole week and I remember at one point, going to the ladies room and asking an obstetrician who was in the class, if she thought I could get pregnant again. I was 45 and she said simply, "No." Ouch. I spent that whole summer trying to study out on the deck but I would stare at the same page for hours and absorb nothing. Instead I would look out into the yard at the slide and the swings and wonder when Gregory would come home.

During that week of review, I became fixated on Mary Tully. She was so intriguing and the subject was fascinating to me. She knew so much that I wanted to know too. I also wanted to know her, but felt that I would never measure up to such an icon . At the end of July, 1996, I sat for that 8 hour exam and came home completely spent. I piled my whole family into the car and said, "Let's go to Atlanta to the Olympics" and off we went without tickets, a room reservation, or any plans. I needed to get away and did. We missed the Olympics sniper which was a good thing and had a fun time.

In October, I found out that indeed, I had passed the exam and was now an officially documented, International Board Certified Lactation Consultant, commonly known as IBCLC. I was as thrilled as any very depressed, still deeply grieving, desperately wanting another baby woman could be! Shortly after that, I went for coffee in Barnes and Noble with Elizabeth Edwards who I knew from Compassionate Friends. It was there that I shared with Elizabeth my struggles to become pregnant. "Ah, she said, "you are too old for it to happen naturally. Run, don't walk to this Infertility doctor at UNC. I know what you are going through because I am going through the same thing." Of course, Elizabeth Edwards wasn't the wife of senator/president-wannabe/involved in scandal at the time. She was then, just another deeply grieving mother who was trying to figure out how to go on, and was married to simply, a successful NC lawyer. I was stunned for more reasons than one, but I did in fact make that appointment and get on my way. I later switched from UNC to Duke who could see me faster and move things along more rapidly. By December 1997, I was pregnant and 46 years old. By February, 1998, I found out that I was carrying twins! I credited Elizabeth Edwards, and always will!


On August 21, 1998, my fifth and sixth sons were born at Wakemed hospital. By the next day, Mary Tully appeared to help me latch them on with a twin nursing pillow. Surely I would not need any help. I had been cocky as could be over the years when it came to any discussion on nursing twins--- "Well you have two breasts, so you should be able to breastfeed two babies." When Mary's smiling face and eyes appeared that day, I already suspected that trouble lie ahead. My 46 year old breasts were saggy and limp. My babies were hungry. I was in fact, a veteran LLL leader and now an IBCLC of two years. Mary helped me latch both Sam and Will on at once and I looked at my husband in dismay. "We've really done it this time Shep!" I said to him discouraged. Mary came often during my postpartum stay, but breastfeeding was not improving. My LLL co-leaders were convinced that I just needed to get home and be in my own bed. That happened, but my breast milk supply did not.

A few days after my return home, Mary began her nightly visits to my bedroom. She would work so hard all day long at Wakemed hospital and then come to visit me on her way home. She would arrive with a case of 12 Mason jars of human milk and an arsenal of breastfeeding gadgets. Mary would try massaging my breasts to elicit a let down that never came. She would feel for heat in my breasts (indicating an increasing blood supply) but there was none. She would cajole the twins to suck to no avail. Not only was I devastated as this unfolded and then, panicked about how I would feed my babies, but I was MORTIFIED that this was happening to me! So, one night I said to Mary, "Tell me your deepest, darkest secret." "Why?" she asked. "Because, I want to make sure you never tell anyone that I am unable to breastfeed and if you do, well then I will spill your dark secret. This is better known as blackmail." Mary roared laughing and agreed to the deal.

I stuck with the routine of nursing, then weighing on Mary's scale to check intake which was typically pitiful, then double pumping, then feeding again, then using a supplemental nursing system around my neck to try and feed the babies human milk from another source. And, night after night, Mary would come to help. She was magical to me. I wanted her to be my mother, my sister, my best friend and of course, my mentor. I would never forget her compassion and her hugs and her crying with me saying, "You're right. This is completely unfair that this would happen to you." We spoke at length about Gregory and his death and about how my kids were still struggling. She shared with us the challenges with depression that her son had as well. After three months of struggling, my full milk supply finally came in and my twins became genuine breastfed babies. They went on to breastfeed for years to come, thanks to Mary.

In the first few years of twins, you can hardly remember anything. You are in survival mode and when you are as old as my husband I were, you are in barely surviving mode. So, obviously I did nothing with my IBCLC status. I was still a LLL leader and occasionally led meetings with two babies nursing. This was impressive to all and no easy feat while sitting on a chair with no arms. But one night at a women's group meeting, my friend Lisa said to me, "When are you going to put that certification to use? You haven't done anything with it." Food for thought and a pressing of my guilt buttons, I ruminated over this and kicked into action. Despite having toddler twins and school age kids coming and going, I began renting a few breast pumps out of my home. Within a few years, I had over 50 pumps coming and going and earning me income from my dining room. I also started doing breastfeeding consultations which I was as nervous as could be about. I just couldn't really figure out where and how to start.

I called Mary one day and asked if I could come and sit in her office to watch what she did. She declined saying that it wouldn't be okay to do this since she was in a hospital office. I am not sure if this was really true or if she just didn't want to be bothered with me and I guess now I will never know. Once when I asked her to write me a letter of recommendation for a scholarship, she did and referred to herself as my "mentor.' That was the first time I realized that she thought of me in that way and I was not sure how I felt about that.

Over the years, I attended many professional conferences in many places and always, Mary Tully was there. I have clear recall of how I felt around her. As open and as smiley as she was, I always felt intimidated. She was revered. She had written a book, authored many a research study, taught classes to professionals, had run the lactation department at Wakemed hospital and then UNC CH hospital, created the Human Milk Banking Association in North America, and she ran with the leaders of the pack. So, the scenario would go something like this: I would arrive at a conference and then pretty soon after, I would see Mary flying around busy or chatting in the hallway with friends. I would politely wait my turn, then hug and kiss her, but quickly pull back, thinking I was wasting her time. At lunch, I would smile again when I saw her, try to come up with something warm and witty to say and then slip away. I could not feel I was qualified to eat with her and her peers. I regret this deeply, now.

Once when I arrived early in the morning at an Art of Breastfeeding conference in Chapel Hill, Mary was the first cheerful face I greeted. I would always be so happy to see her and then immediately feel slightly awkward with what to say or do next. Usually, her side kick, Mary Overfield would come along and they had such important things to do, that I would simply step aside. But that morning was different in that my cell phone rang just as I filled my hands with coffee and buffet breakfast. It was my son, Nick saying he was in an ambulance following a serious car wreck and on his way to UNC hospital. I became immediately hysterical and Mary ran around getting me to my car, getting someone to help me get there etc. She hugged me tight and told me to go. I had this feeling that Mary knew, that indeed, I could not withstand another tragedy in my life. She just knew.

At the 2008 conference in Las Vegas, Mary was sick. She had a bad cold, and then terrible asthma problems. Her friends wanted to take her to the hospital but she refused. They felt she had pneumonia, which of course, she did have, but I remember her saying to them, "Oh, I just don't want to go to the hospital, please." She went home early and got medical care home. Later on in the year, she had lots of problems with her back and lots of pain. She got a portable TENS machine which seemed to help. Then, at the conference this past July 2009, Mary was everywhere and we spoke briefly but I had my consistent feelings of inadequacy which kept me from eating meals with her. However, my good friend Lisa's son had just been diagnosed with Colon Cancer and we were texting back and forth wildly. When I told Mary, she was full of concern and I texted Lisa, "Get your son out of Rex Hospital as per Mary Tully. She says it is no place to be for a cancer patient."

When Mary left early Virginia, she found herself with relentless full body itching that nothing would relieve. She also felt that she was turning yellow. Mary and I had discussed our mutual primary care docs who we were not enthralled with. She said, 'I'm firing them and you should too." Anytime, I ever needed referral for a doctor for me or anyone in my family for for friends, Mary was the one to ask. Immediately she would tell you who was best in the field and then shortly after, she'd have you set up with an appointment. Just last year, I came home from a trip with a horrific rash on my breast that wouldn't go away. My OB was alarmed, as was his assistant. I was completely terrified and convinced that I had Inflammatory Breast Cancer. I called Mary in hysterics. She too, sounded quite worried. Within 24 hours, she had me seeing the top practitioner in the field who quickly allayed my fears diagnosing a full blown thrush infection. Whew. Thank you Mary.

But unlike me, Mary was not quite so lucky. She approached her new PCP and said, "It's cancer isn't it?" "Yes," her doc said, "Pancreatic cancer." And so began the hamster wheel of hope, surgery, care, more surgery, more hope, chemotherapy, more hope, and the whole exercise in insanity. I am just not sure if false hope should be offered for a cancer so wicked, so deadly that it has a five year survival rate of 4%. The question is do we NEED the hope, or do we NEED the truth? Mary had the horrendous Whipple procedure surgery which pretty much removes and rearranges every organ in your body. After this new configuration, your digestive system cannot really figure out what on earth to do with your food, so it sits there for most of the day and then you throw it all up. So, Mary never felt much better after this and her energy decreased little by little and a lot by a lot when she was given more and more pain medication that made her so sleepy.

Last year, we attended a wonderful 60th birthday party for Mary's husband, Doug at her house and I of course, was so honored to be invited. It was a lot of warm fun. I was also invited to Mary's Annual Christmas cookie bake which I believe I only attended once because I am not fond of cookie bakes, but again, I was honored to be part of it. I must admit, I do not think I ever felt adequate around Mary, through no fault of hers. It is my inadequacy that needs addressing. So, there I was visiting with home made butternut squash soup in hand, freshly made tapioca pudding, and some of my husband's infamous scones. We sat down to eat together and Mary reached across the table to pray over our food. I must say, that even that day, something was missing from Mary's eyes. Fear had taken over the usually twinkly eyes, instead. We ate together and she ate slowly, but well, while I waited for it to all come back up, but it didn't. She was moving well and insisted on emptying the dishwasher herself. I spent a long visit that day as Mary sat on the leather couch and I, on the IKEA chair. I felt very conscious of me overstaying my visit, and could almost hear Mary Overfield admonishing me for staying so long, but we were laughing and having fun and talking about everything going on with our kids and careers. I stayed a long time because I felt it was a good distraction for her. But then, I sat in my car and cried my eyes out.

The next time I came, it was with my friend Lisa, who had had a prayer shawl made for Mary. It was one that was crocheted by nuns as they prayed over the shawl for the particular person it was going to. This visit was a little more awkward since it was evening and Mary's son was there as well as the love of Mary's life, her granddaughter, Anika. When we said goodbye and got out to the driveway, Dr. and Mrs. Young were on their way in with food in hand. We chatted in the driveway about Domperidone helping breastmilk production and then left. Lisa and I felt sad but oddly, hopeful.

I came again, hearing Mary was not doing well and brought home made vegetable soup and tapioca. Mary was woozy from the drugs and she hated it. I asked, "Mary, what do you miss most?" "Thinking, she said, I love to think." Then, Mary said, "You know I cannot go back to work until Spring. It is going to take me awhile to get my strength back." I thought to myself... I don't think so, dear friend, don't really think so, hope so, but don't know so. Mary ate the soup, but I declined. I sat opposite her and watched as her eyes would roll back from sleepiness. We didn't pray this time either. I never knew at this point whether one should approach the topic of death or not. I suppose not, but what if the patient also feels that she'd like to talk about it but doesn't want the visitor to be uncomfortable? She asked about my son and his Lyme disease and asked about all my other boys as well. She asked how my friend, Lisa's son was doing too. So very Mary.

Is caringbridge.com the kiss of death? Does anyone ever get better and move on after caring bridge or does everyone on there die? I will admit it is a great venue for disseminating information quickly and widely and it works. So, Mary O, set up a Caring Bridge page for Mary Rose and here we were able to keep track of what was going on. Within the four months since she set it up, there have been in fact, over 12,500 hits and just short of 1000 messages entered! I believe this is unprecedented and the messages are the most admirable, most loving, most amazing things you have ever read, adoring and thanking Mary in every way from all around the globe. What is it about Mary that makes a life long impression? I believe it is summed up in one word, "giving."

There were positive and hopeful updates on certain days with reports of doctors saying there was every reason to believe in full recovery. And then, that they had gotten all of the cancer in the surgery and nothing had spread. Oh and that Mary wouldn't need radiation, just chemo, but Mary was miserable and sick and couldn't digest food and was in pain all the time. Back and forth to docs and hospital she would go. Finally, 10 days ago, Mary O emailed saying that Mary could not breathe and that she was not expected to survive the night. Ah, but they placed a drain in Mary's lungs, removed the fluid and kept her alive for another week. This was the greatest, most Mary-giving blessing to all of us. Friends and colleagues began coming from various parts of the country to say thank you and good bye. Mary's thinking of others, continuing on her death bed.

On Wednesday, January 13, I was scheduled for a mammogram at UNC. I went with an attitude of "just don't give me any bad news today, I have someone I really need to see." After my mammo, I headed over to cancer hospital. In the room, was Mary's sweet husband, Doug, the infamous Amy Spangler, breastfeeding guru and author, and Mary's sisters. And there, was my Mary, looking ever so Mary, laying in bed with drain in her chest. "Mary, I said, What is going on?" "Well, she said, it's a long story." "Tell me the short version then," I said. "I am very sick inside and I am dying." Whew.... This was a tough dose of honesty for me who thinks you can never be too honest. "What is it like?" I asked, "Is it like 'falling off a cliff, like Jennifer said in Love Story?" "No, she said, it isn't quite like that." But she never did tell me what it was like because the next thing I knew, we were told to wait outside so she and Doug could talk privately. We waited outside for a long time, with Amy and the sisters and me, all talking nervously. The ocassional 12 year old doctor would go in and out of the room as well. Finally, when it was time for us to go back in, Amy said, "Okay, now Ann will say goodbye and then leave so you can rest." "Oh," I said. I held her small, cool to the touch hand and looked deep in her blue eyes and said, "Mary, I am everything I am because of you. And, I think you did a pretty good job, no?" I couldn't swallow to save my life. "Who will I turn to now Mary? "Oh, you can go to Amy, " she said. "No, Mary, I can't send mothers and babies from Raleigh to Amy in Atlanta!" "Mary, I said, as I fought back not only tears, but complete hysteria, "What about Gregory? Will you hold him?" "Oh yes, she said, I will carry him all around until you come." I kissed her, tearfully,left and sat in the car weeping.

For some unknown reason, I headed to A Southern Season. What is it about that southern gourmet food/wine/gadget store that I find akin to comfort food? There is something peaceful and nurturing there that in my worst moments coming from UNC Hospital (like the time I was convinced I had Inflammatory breast cancer), I find complete distraction here. So, this is where I went following my farewell visit to Mary's bedside. I wandered aimlessly for over an hour, tried to convince myself to splurge on something expensive because, really what did it matter, but was unsuccessful in doing that. I worried about the portable pain pump that the hospice worker asked me to find that I never did, and finally I bought a lemon drink, some cheese and crackers and drove home to Raleigh with that jello feeling looming in my belly.

For the next 10 days I checked Caring Bridge obesessively, several times daily. There were few updates which drove me crazy, not knowing what was happening to Mary. But, what there was, were hundreds of heartfelt notes of gratitude and goodbyes. I emailed Mary O, who was in charge of visits, and details and asked if I could visit Mary one more time as she lingered but was told not to, so that others could. I understood. On Wednesday, I opened some odd emails, asking if I would like to go with friends to the memorial service scheduled for Thursday. I was mystified and confused since I had not gotten word of Mary's death. I was on the brink of hysteria in fact, trying, trying, trying to find out what had happened and when. I had sat bolt upright in bed at 4 am-- was it around that time? I had been unable to stop my thinking of Mary night after night, making me unable to sleep for any longer than an hour or so at a time.

Finally, I spoke with someone who told me that indeed Mary had died at 3:30 am with her sister at her side. I sat, staring into space for a long time, before I told Shep what had happened and cried quietly, yet still in disbelief. Why is it that, despite much prep and time for transition, we can still be so shocked that the presence of one so very present, will be no more? I was hurt that no one told me and my anxiety level had soared out of control waiting for the news. When I spoke with Mary O, she was tearful, glad that her friend was out of pain and entering into arrangement-making-mode, which is where she is most comfortable. She apologized the next day, for me not being told, but by then, I realized how little that mattered.

On Thursday night, Shep and Lisa and I went to a Catholic student center on the NC State campus for what was called "a visitation." There was a long line of folks to meet the long line of Mary Rose's family. It was awkward and tiring. We spoke with Doug and with Mary's son, Chris and then, her sisters. Her sister said tearfully, "No one should have seen how Mary looked those last few days." Doug said, "She was in so much pain, despite the pain meds that I finally felt like she should go to be out of pain." Processes. Mary's ashes were in a beautiful red enameled container, but it bothered me that there was no photo of her beautiful, loving self.

On Friday morning, I went to the Catholic Cathedral downtown with much anxiety and always, the jello feeling. I found a seat and at first, felt like I did not want to sit with any of my colleagues. But, then when I read the program and saw that the hymn, "The Bread of Life" would be sung, I panicked. On a good day, I can barely tolerate this music. It was first played at my Aunt Florie's funeral which I went to New York for, with Gregory in my arms. Six months later, it was sung at Gregory's own funeral in New York and then, again at his North Carolina funeral. Two years later, at my father's funeral. So, the minute I hear it, the slide show begins and though I always convince myself that I can make it through the first few stanzas, I never make it past line two, without disintegrating. So, I began searching for my friend, Cindi but could not find her. Doug walked down the aisle, holding Mary's container, weeping. I pictured Shep, carrying mine. And then, a beautiful, deeply personal mass began with two priests who knew Mary well, praising her life and her giving nature. She had made a vast imprint on the world and it did not go unnoticed. The younger Columbian priest referred to Mary as though she had mothered him. The older priest had been through chemotherapy himself and felt that Mary had cared for him and he was so appreciative. He was rather infirm though and used a cane which he leaned on.

And so, the mass proceeded with tears and then, it was time for the infamous hymn, "I am the bread of life, He who comes to me shall not hunger." Panic set in. I had no one to hold onto. It was time for communion. The infirm priest went crashing to the floor, splat, just like that and Doug and Chris raced up to help him. Oh my God. I lost it... too, too much and I headed up for Eucharist but was disoriented and just short of hysterical. I carried the host all the way back with me, forgetting to put it in my mouth. I couldn't breathe well and could not stop crying. Miriam Labbok was in front of me, another one of my highly revered colleagues who holds rank as both an MD and a former Unicef executive with the UN. She sweetly and kindly came back to sit with me and hold me and I appreciated it so. I whispered... "This is the hymn from my son's funeral."

The music was really so deeply touching. I am a practicing Episcopalian in a modern, liberal church, but I tell you, the music is awful. A bunch of hymns from hundreds of years ago that I find mostly find irrelevant, unmeaningful, and out of touch with our modern day travails. Then came "On an Eagle's Wings" so fitting for Mary and finally her favorite song, "Simple Gifts" so we could all refrain to "Dance, dance, wherever you may be." And, when it was over, several eulogies, one by her son in tears, one each from two sisters, Miriam describing all Mary's professional credits that were simply phenomenal to have accomplished in one short lifetime along with her intimate relationship with her colleague and friend, a couple who had been close personal friends, and finally, a nervous description of friendship from Mary O. Mary O and Mary T, were joined at the hip in every way, so it was hard to believe that she was still standing and in control. That's Mary O, though.

And then, it was over... just like that, no more Mary. Outside, was freezing rain and there was a shaking, Mary D. who had been my friend and birth doula for the twins, Nancy, my first LLL coleader when I moved to NC, Kathleen who had delivered donor milk to my house on more than one occasion and with whom I had homeschooled one year. There outside this church was the full array of medical practitioners, researchers, comforters, and nurturers, almost all taught either completely or in some part, by Mary. A church completely full of those whom she had touched and taught, and I was one of them.

At the reception following, I met three interns who are in the educational program at UNC, now named after Mary. They are very bright young women, who have not had children yet, but who are intensely drawn to this field of lactation through a very different doorway than most of us came through. And that is okay, because they are the future. We are getting older, and we must proliferate for the field to survive so that all the struggling mothers and babies have someone to go to for help. I was encouraged and impressed. I kept looking around and feeling so overcome with emotion on all that Mary had made happen and I couldn't wait to tell her all about it, but that would not be.

That night, I could not sleep. I went to bed, exhausted, but began thrashing about and proceeded to have what I believe may have been an anxiety attack. I could not stop imagining Mary dead, and I could not stop wondering, "How do I know that I too, do not have pancreatic or a similar deadly cancer? How do any of us know?" It got worse and worse and it seemed Shep could not comfort or calm me down. At 5:30 am I went downstairs to watch some mindless tv which helped. It had been an awful night but perhaps, it needed to be. As uncomfortable as it can be, maybe some sleepless nights are necessary and real and a working through the traumas and the fears. Maybe.

I went to work with a heavy heart the next day. My first patient had her third baby and was unsure how breastfeeding was going. Like a splash of cold water, she said to me, "Mary Tully is my lactation consultant and was the only one who kept me going with my last baby. She was a failure to thrive nursing baby and everyone was telling me to quit, but Mary, who was the only one who kept believing in me and that it could work. I love her for that. I had every intention of seeing her as soon as this baby was born to be sure I got off to a good start. I called Mary at home in October to tell her I was pregnant and to make a plan. She was excited and we spoke at length but she never told me she was sick. We decided that I would come to her house this time. But, I went into labor at 3 am on January 20th and at 5:30 am my baby was born. We had planned to name her, Mary, but when we looked at her, we changed to Katie. I now know that Mary died at 3:30 am. I am so sad." I asked her, "We all want to know. What was it that Mary did behind closed doors, with mothers like you, that was so nurturing, so helpful and so effective? What can we all do to be more like Mary?" "Mostly, in the seven visits I had with her, Mary just believed in me and that all would be well. She was so sweet and so caring." We sat close, hugged, and cried and I stared into her baby's blue eyes, knowing that life would go on.

And so now, I have put myself in this uncomfortable, slightly pressurized place, where I feel I must pick up some of what Mary left behind. I do not feel confident enough to pick up any of the research, the program creating, etc... but I can help out with the field work. So, I intend to do as much as I can to make Mary proud and to share the love and the caring that she shared so easily and effectively. Thank you, my dear, dear friend, Mary Rose.