ACPA Family Services

Cleft-Craniofacial Community Stories

Starr Van Keuren

I would like to dedicate this story to my departed and loving mother, Guadalupe.

My name is Starr, and I am 42 years old. I was born in Minneapolis, MN. For some reason a few days ago, I sat at my computer, typed in “cleft palate,” and behold this website appeared. I was amazed that there was support for adults. I never in my childhood/teenage years sought out or knew of any type of support.

Although I was asked as a teenager to speak to parents of children with special needs, I declined at that time. I don’t think I was ready to fully accept my cleft lip and palate. I remember thinking, “How am I going to tell others it isn’t so bad when I don’t believe this myself?” I just wanted to look like my siblings without the scars and the speech impediment. My teenage years were difficult for me due to feelings of anger and low self-esteem. I had grown quite weary of the doctor appointments, hospitals, dentists, speech therapy, ear infections, and most of all the comments and looks from other people.

My mother was there emotionally and physically with me from day one. She was the one that dried my tears and calmed my fears every time I had to have another surgery or see another doctor. My mother was so beautiful inside and out, and knowing that I was a part of her somehow gave me the courage to go on. As a parent now, I can only imagine how my parents must have felt the first time they saw me. My father had a difficult time dealing with the fact that I had a cleft lip and palate. My mother had to take me to most of my medical appointments solo, with no support from anyone.

After graduation, I did attend business school, worked as an Administrative Assistant, and got married. My husband had issues with stuttering and I had mine with my cleft lip/palate. We wanted children very much, but we both were very nervous about the possibility of having a baby with birth defects or issues with stuttering. I am proud to say after many miscarriages, infertility problems, testing, and surgeries, I am a mother of two beautiful boys! The youngest did inherit the stuttering problem. It was difficult at first, especially for my husband, but we deal with it as a family. We offer our son support and encouragement, and we don’t treat him any differently than our other son. I remind him that if he looks deep inside himself, there are traits he has that others don’t, and those are the traits he must believe in and embrace.

The one thing that I am very serious about is working to keep my children thinking positively and liking who they are. I battled low self-esteem for many years, and I still struggle at times today. As a parent, I think it is important to teach your children to be the best they can be. Find their strengths, and teach them not to emphasize their weaknesses. And don’t forget to seek support for yourselves. Encourage your children to soar, and soar with them!

With time there are more medical updates, new studies, more education, and even new rules in hospital treatment. It was extremely difficult staying in the hospital when I was a child, since my mother was not allowed to stay overnight with me. Still to this day, I can remember the fear and sadness I felt watching my mother leave the hospital room without me, as well as the tears in her own eyes.

My advice to teenagers and other adults is to balance your life in all ways—emotionally, physically, spiritually and financially. I know when I accomplish goals; I start feeling better about myself inside and out. I still sometimes slip into negative thinking, but I work on it everyday. Hopefully one day, it will be in the past!

Last Updated: Jul 24, 2006