Again, it seems we have much in common. My surgeries were delayed until I emancipated myself. In my day, you were a minor until age 21. At age 18 I had my second surgery. Luckily, for me, Easter Seals had a great program and sent a surgeon from the Mayo Clinic and my initial closure at 6 weeks was done very well. My mother was repulsed and freaked out about my birth condition. Her obstetrician had never delivered a baby with a cleft and kept her drugged for days. My mother told me years later that she thought I had died.

I had waited for so long for some kind of help! As a baby, I was left in the hospital for months because no one knew how to feed me, as the story goes. I was in a hospital 30 minutes from my home. My father visited once weekly but my mother never saw me until I came home from the hospital, after a few months.

My second surgery was at age 18 and was a wonderful experience because I finally had a more normal looking face. There were many more surgeries to come, 17, in all, counting orthodontic. There was speech therapy, braces and all that goes with clefts.

I begged to go to a doctor but was made to feel that the reason I was deformed was that I didn't have enough faith. I prayed so hard, so many times, as a child, and yet nothing changed. There is no good reason that I was not taken for medical attention and I think it was a crime (literally) that no one turned my parents in for neglect and cruelty. My father was an important person in the community where I grew up. During his fits of anger, I received blows to the face where my cleft was and you can well imagine how painful that was. I had my ear drums broken from blows to my ears.

When we are children, it's hard to understand all that is happening, when we suffer and no one helps. It makes us feel like we are the ones at fault. This also describes abuse. So I would add abuse to the neglect you speak of. It is abusive to make any child endure such unnecessary pain.

All that said, I would not change a thing about my life, for it has made me who I am, 61 years later. I was blessed with a fighting spirit, which explains my Avatar! I learned so much about what others endure and it has helped me, help others. It has also taught me the gift of forgiveness. I'm not saying that is was not a struggle and it was a monumental trial to overcome all that is involved with a cleft and the feelings of guilt I was raised with.

While I do not condone my parents' actions, as years passed I came to understand some of them. My mother felt a tremendous sense of guilt because she smoked through her pregnancy and since my sister was born with cleft lip only, she knew something was up. She did not smoke during the pregnancies of my older sisters and they were born without clefts. None of my children or nieces or nephews were born with clefts so it is assumed that it was indeed caused by smoking. My mother felt that she never bonded with me because of the separation. That is something that I cannot wrap my mind around, even if I can understand it. We made peace the year before she passed and I heard for the first time, the words, "I love you", from my mother. I had to say them several times to her, before I heard them. I learned that she really did love me but didn't know how to cope.

As for my father, I was able to forgive him, after he died. He always seemed so fearsome to me and when I visited him at his deathbed, after ten years of not seeing him, he didn't look so fearsome, anymore. He was a frail old man who had plenty of regrets. He did a lot of good things for me while I was growing up and I try to concentrate on those. When my children were young and I was seeing a counselor for unresolved grief, I was advised to visit and forgive my parents. During the visit, they blamed me for their failures but it also came out that my father had been abused by his father. He even commented that I had done better than he, because I did not abuse my children as two of my sisters did.

In the end, the delay of surgery, orthodontics and speech therapy was a blessing, because methods improved so much from the time I was a baby. I had the good fortune to have the best surgeons, cleft palate orthodontic specialist from USC and some wonderful mentors in college, since I was in college when I had most of my surgeries. I went to college in San Luis Obispo, and had my speech therapy, in what is now, a famous clinic and their program is marketed internationally. I had the very best of everything, all because methods were better and I was always in the right place at the right time. I studied about current surgical methods in a medical school library near my parents' ho,e. The director of speech therapy at that college had a bilateral cleft and used a prosthesis, a retainer type of device that covered his cleft because his surgery was done 100 years ago and that was the best that could be done. He was in his 80's so it may have been even longer than 100 years. Anyhow, he was appalled and let me research and gave me advice. I became a T.A. for a professor where I attended college, who encouraged and mentored and me and my speech therapist actually had me doing work with people with cleft patients during college years.

It's been an incredible life and a story that I rarely talk about. I was blessed to find a husband who loved me before I had finished all of my surgeries and therapies and we are aging and gray and grand parents! I have had a good life. Much of that, I had to create myself with the help of some great people. You can and will endure your experiences and you will be stronger for it! I can't leave out my faith in God for helping me to be able to forgive and move on and use my experiences to help others.

Would you mind sharing with us your funding for treatment at this age? I am always looking for funding sources, especially for young adults.

God bless you on your journey, of healing of body and spirit.

I am in the process of trying to understand my parents decision not to get me the necessary treatment and I want to try to forgive them before its too late. Both of my parents had rough upbringings and their parents were not the best role models. My mom started having children at 17 so I dont think she ever had a chance to really live her life and find herself. Unfortunately, she took out her rage and frustration on my older sister, who eventually became emancipated at age 16 and left home. My brother and I didnt have to experience the psychological and emotional abuse that my sister did, but my mom was always detached from us emotionally. My dad abused drugs and alcohol for many years, but he had brief moments of sobriety where he was absolutely wonderful. After he became sober for good, he revealed to me that his battle with drugs went into overdrive when he found out that I would be born with CLP. He told me that he felt that his heavy drug was the reason why I was born with a birth defect. But hes never showed interest in my treatment.

Forgiving them is really hard, especially since the surgeries and my treatment plan isnt going too well. Instead of blaming them for all of my issues, I am trying to break the cycle and stop myself from making the same mistakes that they made. My parents mistakes make me want to be a better person and live a better life.

As for my the funding for my treatmentone word: insurance. My plan is required to cover the cost of my surgeries minus a few miscellaneous but very affordable costs. Which is very funny, because my mother always told me she couldnt afford to pay for my surgeries, but all she had to do was obtain a referral from my insurance company (which is very, very easy to get) and give it to the hospital. The process is so simple, its almost ridiculous. My pediatricians were practically shoving these referrals to my mom when I would go in for my check-ups because they couldnt figure out why I wasnt making progress with my treatment. And whenever I had an issue with my insurance company, I would just tell them that I am undergoing treatment for CLP and they immediately resolved the issue. One rep even asked me why I never received treatment while I was growing up and when I told her my story, she gave me her contact info and told me to call her anytime I had an issue. So the whole money excuse my mother made up was just her way of saying she didnt feel like dealing with my issues. Shes worked for the federal government here in DC for over 25 years and shes poured thousands of dollars into renovating our home and other various material items. Money was never the issue.

I actually lost coverage when I turned 22 because shes a federal employee and thats the cut-off age for dependents. I was DEVASTATED because I was still in college full-time and I couldnt get a full-time job with benefits. When I tried to talk to her about it, she just shrugged. I had just gotten braces put on and I had no idea how to finance the rest of my treatment. I tried to apply to state programs and hospital-sponsored initiatives, but I didnt meet the requirements, partly due to my age. I exhausted all of my resources and nothing worked. I felt like dying at that time and it was a really dark period in my life. Thankfully, Obamacare allowed my insurance to be reinstated and I was able to continue treatment after seven months. I am 24 and my insurance coverage will end after I turn 26, so I am trying to get the major surgeries out of the way now while I can. Unfortunately, there have been a few setbacks but I still have faith that things will turn out OK for me. Its really frustrating because my doctors act as if Im a kid and I have all the time in the world and I just want to shake them!! But just Im thankful that Im making some kind of progress.

You have courage and strength! Keep moving and researching and being sure to have the best care available. Be sure whoever works on you is certified and not just wanting to make a buck! So, your mom's insurance reverted to you? Do you have access to a cranio-facial (cleft palate) team?

Keep up the good work! Keep after the professionals who work on you. I would think if thee was a cranio-facial team overseeing your care that you would get quicker action and they would realize you are short on time.

You go!

I do see a craniofacial team and they are the ones who are providing my orthodontic treatment right now. I think they know that I'm eager to have surgery, but I haven't told them why. Maybe I should be honest with them so that they can help me make long-term arrangements for my treatment since it's taking longer than expected.

I think that's a great idea. They are looking out for your best interests but sometimes they need a little input!