Visit MaineToday's profile on Pinterest.

About The Author

mainetoday

Greta Rybus

Greta Rybus is a photojournalist and photo editor living in Portland. She started her blog, “Who I Met," as a way to begin juicy conversations with interesting people she meets. The blog has migrated with her from Montana, Europe, and, finally, to her new and dearly-loved home in Maine. You can see more of her work at www.gretarybus.com

Send an email | Read more from Greta







Who I Met with Greta Rybus
Posted: April 1, 2014

Fran Philbook- mother, student, and founder of the Cleft and Craniofacial Support Network and Organization of Maine

Fran emailed me about a project she was working on to finish her degree at Maine College of Art (MECA). We met over coffee to chat, and she told me about the project and her story, which inspired the project.

She told me about her husband Harold and their two sons, Kai and Griffin. Both Harold and Kai had been born with a cleft, an opening in the mouth, palate or lip that forms in the womb. She told me about the long journey that often comes with cleft lip and palate and how little conversation and community there is around facial conditions. Motivated by that, she created a support network for children, adults, and family members affected by cleft lip and palate, and she went back to school to finish her degree.

She asked me to take photos for a series of posters, which will become her final project and which she hoped would capture “the truth of their condition but also the beauty of each individual.” The posters are meant to embolden and enlighten people to replace negative stigma with kindness, respect, and understanding. Fran is still working hard to support and locate other families in Maine with children or adults with a cleft (many of whom are pictured in this post).

Fran’s husband Harold and her older son Kai.

 

TELL ME ABOUT YOUR FAMILY

Well, I’m out numbered by the fellas, that’s for sure! My husband and I have two sons: Griffin, soon to be 4, and Kai, soon to turn 7. They keep us super busy. Our youngest is loud and has quite the demanding, yet sweet character. We call him our megaphone, because his voice only has two settings…loud and louder. He’s the entertainer and jokester and super chatty. Our eldest is a mover, always on the go, but has a really insightful side that is tuned in. He’s really creative and imaginative and big-hearted and is our social butterfly.  They are like night and day most times, but it seems to balance out between the two of them.

HOW DID YOU MEET YOUR HUSBAND?

Harold and I met at Maine College of Art. I met him on the first day of BFA classes. I had just moved from the Midwest, totally on my own, and had only been living in Portland for two weeks before I started school at MECA as a transfer student majoring in painting. Everything was really fresh and new, but intimidating and unfamiliar, but a complete adventure. It was January and lots of people seemed really closed in, unapproachable, a little brash. It didn’t help my being homesick. I was late for my first class and was running to catch the elevator up to the fifth floor. I had all my gear: backpack, sketchpad, paints – totally loaded down. I saw the elevator door beginning to close and I was running and yelling, “Wait! Wait! Wait for me!” and I thought for sure whoever was on the elevator wasn’t going to wait for me. To my surprise, at the last minute, this electric blue Doc Marten boot comes flying out to stop the door from closing. When I stepped in, there was a good-looking guy with ear buds on, a stocking cap, cargo pants, holding a mop bucket. I couldn’t tell if he was a student or employee. I could hear the music playing, it was some kind of dance, hip-hop-music I liked.

We made small talk about dancing and clubs in Portland. I told him I was from Michigan and he asked if they had good clubs there. Once we got to the top floor, I thanked him for holding the elevator and he was like, “No problem, have a good first day!” Totally sweet, totally kind, and I was so grateful for that moment. Once I got to class, I realized he didn’t get off at top same floor like I did, so I like to think he was enjoying my company! It wasn’t until a few weeks later, when I applied for a part-time job with facilities that I discovered he was not just an employee of MECA, but an artist himself, and two-time alumni from the school. I know it must sound kind of cheesy, but that’s really when I think things started. When we got married, we knew we both wanted to have children, but there was some reservations. Harold was born with a bilateral cleft lip and palate and it was unclear to us how or if that factored into things.

 

Ellie, McKayla, and Gavin.


WHAT EXACTLY IS CLEFT? 

The human face is formed by two parts growing together and fusing in the middle. At some point in utero, this process is interrupted and that growth stops, leaving holes in the nose, upper lip, and inside the top mouth, the palate. There are four types of cleft: a micro cleft, which is small, self repaired, and affects a small part of the lip; a unilateral cleft (affecting only one side of the face); and bilateral cleft (affecting two sides);  and a very rare type called a Tessier cleft that affects the entire middle of the face. There are different severities and combinations of cleft. Sometimes it affects only the lip or only the inside. In some most cases it is a one-time occurrence and in others it is hereditary. There are different things that can cause clefting, but many times the reason is unknown.

HOW HAS CLEFT AFFECTED YOUR FAMILY?

Harold had a really tough journey with the surgeries and orthodontia, which were incomplete and done incorrectly. This caused lots of anxiety, depression, and self esteem issues. There was lot of negativity, fear, and hopelessness around it. I, however, saw him as completely handsome and beautiful (inside and out) and assured him that part of my commitment to him was to help things get better and that even if our child was born with a cleft everything would be okay. I went to bat for him and started calling surgeons, specialists, insurance companies, writing letters. We got rejection after rejection. Or, if it wasn’t a rejection, we would have to pay hundreds of thousands of dollars up front. No one would help. There were no resources or anything because he was over the age of 21. Our medical insurance would not work with us at all. I was so angry and confused. This wasn’t a “cosmetic” issue, this was quality of life and the functionality of speaking and eating properly. After almost a year of trying to make progress we decided we would take a break and do some more research. I wasn’t going to give up because I believed there had to be someone out there willing to help.

Amanda with Isaac, Eden

 

THEN WHAT HAPPENED?

About a year later, after a move back to my home state, we found out I was pregnant. We were both excited, but Harold was so nervous. I was optimistic, I was relatively healthy, ate right, took vitamins. Because of the family history of cleft they scheduled me at 18 weeks for a special ultrasound. We knew as soon as the doctor came in to talk to us that our baby had a cleft too. I will never forgot the look on Harold’s face. It was heartbreaking. We both cried and my heart sank. I was more worried about him than the baby growing inside of me. He said he never wanted his child to go through what he had to. The doctor told us we had the option of abortion. I think I had some choice words for her and walked out! We went home and stayed close to each other, cried a lot, and did some research. The next morning Harold came to me and said, “God gave us this chance to be parents and I will do everything to make sure things for our child are 100 percent better than they were for me and that includes me being the best I can be for myself, for you, for him. It will be tough, but it will be wonderful and it will be okay.”  That was a huge step for Harold – in healing, in acceptance – I think. We pulled up our bootstraps (and maternity pants!) and trudged forward. That’s what we do best.

YOU MARCHED ONWARD!  PLEASE TELL ME ABOUT KAI.

Kai was born in late July and what we didn’t know was he would also have a rare congenital condition affecting his eyelids too called Ankyloblepharon, where parts of his eyelids were fused together with bands of skin. He had to stay in the hospital for almost two weeks so he could learn how to drink with a special, and very expensive, bottle called a Haberman. Babies’ instincts are to suck, but babies with cleft palate usually cannot create that suction. So they have to learn to drink and swallow, which is not a natural reflex for newborns. It was very frustrating and overwhelming for all of us. After several negative experiences at that hospital, we transferred Kai to University of Michigan Motts and then learned that it would be several months before his first surgeries. Through genetic testing, we learned that clefting is hereditary in our family. I became a nurse and quickly started to educate myself about everything involving cleft. I asked hundreds of questions and we tried our best to handle all the stares, looks, and inappropriate comments and judgements from people about Kai’s looks and condition. Most of our family and friends were kind, caring, and supportive, but there were several who were intensive and judgmental.

Fran with newborn Kai.

 

IN YOUR EXPERIENCE, HOW DO OTHER PEOPLE PERCEIVE CLEFT PALATE OR FACIAL CONDITIONS?

In my experience, some people are not even aware of it. Or if they are, they see through “lenses” similar to my own. Maybe they are familiar with it or know someone with a facial condition like cleft. Other times, people are just completely and utterly naive, uneducated, and inconsiderate. They stare or make rude gestures (kids and adults). Once I approach them or start a conversation, I realize the information they have is wrong or misinformed. They’ve said things like, “What happened to his face? Did someone punch him? Was he in a car accident? Did a dog bite him?” or, “Oh yeah, I know what a cleft lip is…I didn’t know that happens in America? Doesn’t that just happen to kids in China?” or even, “Did you take enough Folic Acid? I heard that’s why clefts happen.”

TELL ME ABOUT ONE OF THE MORE DIFFICULT ENCOUNTERS WITH A STRANGER

One of the most painful was when Kai was just a few weeks old. I took him to Costco for some shopping. I was completely smitten with him – he was such a good baby, and I was a new mother floating on cloud nine (once we got settled into his specialty care and feedings…my confidence grew). I was pushing him in his car seat in the cart and a woman walking towards us was excited to see the baby. As she came up to the cart and saw Kai, she gasped in shock. Horrified, she put her hand to her mouth, and backing away, said  “Oh my god! Oh my god! That poor baby, you poor thing! Oh, that is horrible. Can they fix it? Oh, only a face a mother could love!” She hurried away and I froze. Then I broke down. I scooped up Kai and ran out of the store. I could barely make it to my car to call Harold sobbing and yelling and screaming, the pain, the sadness, the anger­ – all of it flew out. That was the moment I realized I could never see him the way people like that see him. Or anyone with a facial disfigurement. My “lenses” just don’t work that way. Try as I might, I can’t. Kai was almost five months old before we saw both his eyes open all the way and he had his first lip repair. That was a profound moment for us, to walk into recovery and see him struggling to sit up when he heard our voices and to see his big, bright blue eyes pop open to look right at us! Amazing moment. He has had seven surgeries since and will start the next phase of surgeries this summer.

Christine and McKayla, and Owen

 

TELL ME ABOUT ONE OF THE MORE BEAUTIFUL MOMENTS WITH A STRANGER?

One of the sweetest is when he was just about the same age. We were in a diner and there was this old man, about 80 or so, sitting near us. The whole time he kept staring at us and Kai. Then he got up and came over to our table. My hackles raised and I thought, “Oh no, here we go.” Harold started to put Kai back in his car seat and the old man came up and leaned down really close to Kai and smiled and said, “Oh, look at you, handsome little man! You are just as cute as a button! You are going to grow up and make your mommy and daddy so proud! Then, he reached behind Kai’s ear and pulled out a big silver dollar coin and said, “Now you look here young lad, you tell your mother to put this in your piggy bank for college, this is my gift to you, because you are going somewhere and being somebody, you make sure you save that and don’t spend it! That’s for your college!” Then he looked at us and smiled and said, “You are blessed and you are doing a fine job.” Harold and I cried and thanked him for such kind words. He teared up too and shook our hands, paid for his coffee and left. I taped that coin in Kai’s baby book and wrote a little note about that man and his gift. You see, he saw Kai through lenses like mine: through his heart.
HOW HAS CLEFT AFFECTED YOUR FAMILY?

We have to make a lot of decisions and are constantly learning new information, keeping track of lots of extras like appointments, specialists, and all of that. After Kai was born, we decided it was best for me to stay at home to care for him­ – there was just so much involved. We were the only ones who could use the special bottle to feed him. I managed to stay connected and cope through art and community off and on. Then Griffin came along. We were prepared and knew there was a bit of a higher risk, but either way it was okay. Griffin does not have a cleft and we couldn’t have been happier that our family was complete.  After we moved back to Maine in 2010, Harold was finally able to get the care he needed, after we were connected with a wonderful and amazing specialist named Dr. Frank Musciano who started rounds of surgeries and prosthesis care for Harold, which was a huge success. At one point I was nurse to both Harold and Kai! It just means that we juggle a little bit more than other families, and we are more sensitive to families and people who do have special needs.


WHAT DO YOU WISH OTHER PEOPLE UNDERSTOOD ABOUT IT? HOW DO YOU WISH OTHER PEOPLE BEHAVED?

I wish people would take the initiative to find the correct information and be informed. Each year in Maine there are 20 to 25 babies born with some form of cleft. In addition to that, there are 10 to 15 children adopted or who move to the state. This is according to the numbers we have through the cleft program enrollment. This is not counting adult or teen individuals or people who are not enrolled in the state program…or who have other types of facial conditions or disfigurements. There are other types of conditions that affect the face other than cleft and even people who have been injured or scarred or a birthmark may be going through some of the same surgeries, specialty care, or experiences and emotions that people with cleft do. There is still so much shame and fear and negativity around facial disfigurement. Knowledge is power. I wish they would understand that having a cleft or facial disfigurement can be challenging and complex and that each person and situation is different, but it doesn’t make them less human or valuable or beautiful. It doesn’t define that person, but it is a part of who they are, and that is okay. I wish they would just be kind and considerate. Curiosity is okay, but be tactful. I know not everyone has those skills or has been taught that, but we can start to change that by starting a dialogue and offering ways to teach people better ways of behaving and treating people with cleft and facial disfigurements. Be accepting, think with your mind, see with your heart.

 

TELL ME ABOUT YOUR DECISION TO START OFFERING SUPPORT TO OTHER FAMILIES WITH CLEFTS?

A few days after we moved back to Maine from Michigan in 2010, I contacted Patti Williams with the State Cleft Lip and Palate program because Harold and Kai were needing care. I was really feeling isolated and alone in our journey and wanted to connect with other people and families who were going through the same thing. So I asked her if there was any kind of support group or network available and she said there wasn’t, despite there being a few hundred families enrolled in the program for cleft care. A few weeks later I called Patti and asked her to help me start a group. She got me in touch with some other parents and we went from there. In 2011 I established Cleft and Craniofacial Support of Maine (CS Maine) and we are now at almost 65 members, which include individuals and families. We have support group meetings, special events, and online Facebook support group. It has been life changing and inspiring to meet all of these people and have such wonderful support. 

TELL ME ABOUT YOUR DECISION TO GO BACK TO SCHOOL AND TO INTEGRATE THESE EXPERIENCES INTO YOUR EDUCATION

Last year I decided that things were settled enough that I could go back to Maine College of Art to finish my degree. I only had 18 credits to finish and wanted to also use that time to merge my creative passion and spirit with my efforts and mission behind CS Maine. So I designed an Independent Study with a Public Engagement Art aspect to create an education, awareness, and advocacy poster campaign called Facing Maine and use that to revamp our organization and bring it to a new level. We are transitioning from CS Maine to Facing Maine within the next few months. Art has the power to transform. By collaborating with other artists, members of our group, and community, I’ve come up with a new logo, brochures, business cards, three-year strategic plan, and website to launch this new and improved organization. We will be more inclusive, reaching out to people with any type of facial conditions or disfigurement and tying in some elements of art (art therapy and art collaborations) as alternative resources and support for our cause. I will be working toward becoming an official nonprofit and would love to be able to offer our members resources like financial assistance to help pay for medical and travel expenses that are not covered by insurance, scholarships, retreats or workshops for community connection and self esteem building, educational resources for schools and workplaces to teach others how to behave and treat people with facial disfigurement and much more. There is a great need for an organization like this in Maine and I’ll keep taking the steps to make it happen.

 

Isaac, Mary with Lana

WHAT IS MOST IMPORTANT TO YOU?

There are a lot of things, good health, keeping the laughter in my life, staying connected to the people I love. Being grateful for the time we have together. Finding and sharing my voice as a woman, artist, and mother and always staying open to the lessons and enchantment life brings us. Oh, good music and a good book to read.

WHAT IS A LESSON YOU ARE LEARNING OR HAVE LEARNED RECENTLY?

To be a better listener and to take care of myself too! I’m also trying to learn to ditch my “passive voice.” Writing is something I haven’t been that great at, but I am getting better at it since going back to school.

WHAT IS YOUR GREATEST GIFT OR BLESSING?

My husband and sons! And having an abundance of optimism, I guess. It’s got me through and moves me forward!

WHAT IS YOUR GREATEST STRUGGLE?

Sometimes it is having confidence. And letting things go. Also, this winter. Will it ever end?

WHAT IS THE BEST MOMENT OF AN AVERAGE DAY?

Hands down, at the end of the day, when Harold and the boys and I all climb into our bed, snuggle down, and I read stories to our boys. Usually it is three books and I try really hard to use my best character voices and dig into the story. They settle right down and I feel like I have given them a part of my heart and a little adventure before the day is done. The world slows down and it’s just us. I look forward to that part of the day everyday no matter what. I hope they will always remember my voice and reading stories together.

To learn more about the Cleft and Craniofacial Support Network and Organization of Maine, email: fphilbrook@meca.edu (a new site for the organization launches soon!)

To see the final product from this project, visit the Senior Thesis Exhibit at The Maine College of Art from Friday May 2nd to Wednesday May 23rd.

 

Up Next: