Tuesday, August 9, 2011

It. Has. Happened.

On November 26th Ella will be 3 years old.

When we found out we were expecting our first baby - a girl to be born with a cleft lip and palate, we were terrified and began to prepare for the worst. Then Ella came and she was amazing. She was so beautiful, resilient and stronger than we could ever imagine.

Our first surgery to repair her lip was easy, as easy as handing over your 4 month old can be, but we didn't have any real issues with feeding or restraining her from touching her face. Our second surgery to repair her palate was pretty hard, but when looking at all the issues most cleft kids face, we felt blessed.

We didn't have weight gain issues. No hearing loss. Speech for the most part, was on track. Learning was never an issue, she was too smart for her own good and she definitely didn't have issues with projecting sound! We were defying all the things that most parents forewarn you about. How lucky!

Shortly after Ella was born, Joe's aunt Bonnie was kind enough to have her friend Lori send us a letter about her daughter Myah's journey. She too, was born with a cleft lip and palate and was really the only child/parent resource that we had at that time. She wrote about all of Myah's surgeries and what they experienced and for the most she made me feel like everything was going to be fine. However, she also said that when Myah was 3 years old (middle photo) she started to say she didn't like her "puffy lip." I remember feeling terribly sad when I read that. How can a 3 year old know what vanity is? How can they be self-conscious at such a young age?

I haven't seen that letter in over two years. Why would I need it? That would never happen to us. We defy odds. Ella is very confident. In fact, every morning after she is dressed she looks in the mirror, spins and says, "I bootiful."

Until now. Tonight while putting Ella to bed I noticed she was pulling on her lip. I asked if something was bothering her and she replied, "It won't come off." I didn't know what she meant so I asked once more. Again, she pulled on the extra flap of skin on her lip, an imperfection from her lip repair, and said "I don't like it on my lip."

Joe and I have been debating on when it's the right time to have another surgery for quite some time, so I asked if she wanted mommy & daddy to fix it and she said, "Yeah. And my silly nose too."

Worst. Feeling. Ever. I could have never been prepared for something like this. I couldn't believe Lori's story that Myah was noticing things at such a young age and yet, here we are.

Is Ella's cleft noticeable? Yes, of course! It's hard for Joe and I to see it, because we only see our beautiful little girl, but we know it's more obvious for other non-biased parties.

On one hand this makes our surgery decision much easier, but on the other hand it all goes back to my theory that you can try to raise your kids the best you can, but parenting is hard and there are no guarantees!


  1. HUGE sigh! My son will be 2 in October. He is our third child, so he has the support of what feels like the entire town. He is super happy and sweet. He also has a very flat nose. I dread having him notice it. Good luck to you, and thank you for sharing!

  2. Hi,
    i'm a 23 year old who was born with a bilateral cleft and palate. I was born in England, and i can honestly say that when i read this it made me sad.
    I remember the first time i knew something wasn't right about my face and to be honest, the kids let me know. i remember my mum saying i was beautiful and not to listen to what people said (grown-up adults as well).

    I know that with all the encouragement she will be the loveliest person on the planet and you tell her that no matter what she has to go through or people she has to face, its the heart that counts and she's beautiful, the pictures don't do her justice.

    Im happy and content enough in my life because i had a mum and dad who loved me and so will Ella.
    with love

  3. I am so happy to have stumbled across your blog. I am a wife, a nurse and a mother to 3 wonderful boys. My youngest son, Graham, was born with a cleft lip just 2 months ago. We are currently undergoing molding with the NAM and plan to have surgery in the next few months. I too am a blogger so when we were told he would be born with a cleft I naturally wanted to connect with people. Unfortunately, there is not a whole lot in the form of current blogs. I started blogging our journey in hopes that someone else would find it helpful in their journey. There is a lot of information out there but I feel that people's personal experiences offer so much more.
    I am eager to get involved and spread the awareness of cleft lip. If there are any suggestions you have I would love to hear them.
    Good luck to you and your journey. Your little girl is beautiful!

    Jennifer B