What do you want out of life?

Before running off to the hills and really scratching your head to see if this has ANYTHING to do with the facial difference community … just breathe.

It’s important that you ask this question of yourself. What do you want out of life? This life that you and I roll along through every day was meant to be enjoyed and not endured. Hell, everyone of us in the cleft/craniofacial/facial difference community has endured a lot. Children, adults, parents, guardians … you name it. Fear, anger, joy, sadness, loss, grief, laughter and ambivalence all crop up in the emotional register of our hearts.

Yet you have a golden opportunity, no matter what your age, race, creed, color, religious or non-religious persuasion, or whatever, to totally rewrite the script of your life.

What do you want out of life? Let us sit with this question. No … I mean it. You sit with it, I’ll sit with it. We’ll come up with our own answers. Then, see if there is a little, tiny action that can be taken in that direction. More love, more peace, more prosperity, more satisfaction … it’s all for the getting.

Just ponder the question.




Smile a little more …

While it is difficult at times to smile, whether it is because of dealing with surgeries, life issues or difficult emotions, there is something warm and compassionate toward yourself when it comes to smiling.

It is something that I have a hard time doing in my life because I do have a tendency to take everything so seriously. A number of weeks ago, I had a chance to be around a couple that held a special balance between having fun and being responsible. They could laugh with their kids while also maintaining a sense of handling moments that would cause others to stress or freak out.

They laughed a lot, too.

In this facial difference world, there’s always so damned  much to be serious about. Yet I do know that parents and children alike do their best to find moments of happiness.

I’d just like to encourage all of the children, adults and parents within the cleft, craniofacial and facial difference community around the world to … hopefully … smile a little more today and every day.

Happiness is important. It’s not something to throw out the door or forget about. Not in the least. You are as just as deserving of happiness as myself. We’ve been through our tough roads and journeys. Give yourself a break and smile, feel happy and know that you are loved.

Blessings and peace,


Attitudes: Gratitude, Grief and the Pain of Change


Oh Captain Jack, your wisdom leaves me reaching for more sometimes!

Well settle in, kids. We’re going to talk about attitudes for a few minutes. Now every individual that is dealing with a craniofacial anomaly, no matter what it is, has had the unfortunate trials and tribulations of reparative surgeries. Maybe three or four. Maybe 10 or 11. Maybe 19 or 20. How did you get through them all? Did you have supportive parents and friends? How about at school? Church? From your craniofacial team? Your plastic surgeon? Social worker? Counselor?

See, all of these individuals and environments may have played in a role in how we developed our attitudes toward life. Let’s be honest. Some of these places or people were helpful and supportive; others, not so much. The attitudes that they passed along to me and us weren’t always healthy. Again, though, what looks and feels like healthy for me might look different for someone else. That’s cool.

Yet our attitudes can provide signposts to how healthy I and we see ourselves as human beings.

Before I go any further, let me allow our good friend Mr. Doubt to say a word.

A-hem … “Joe, F you. You don’t know what I’ve been through with people staring at my face all my life. You don’t know what it feels like to have a hole in the roof of my mouth where mucus from my sinuses comes through all the time. You don’t know what it’s like to have my face worked on every year, or so it seems, since I was born. You don’t know all the negative language and what people say about how I look. You talk about attitudes. Well, I have some bad news for you dude. I got an attitude, and it’s mine and I’m not changing no matter what you write. So stick it up where the sun doesn’t shine, dude.”

Thanks Mr. Doubt. You’ve really helped out this blog post. (Hey, shhh … just between us, Mr. Doubt could use some love today. Show him some love, will you?)

If all of the above has run through your mind before, then you can rest in the comfort that you are not alone. So I’m going to address the topics of gratitude, grief and the pain of change, and how these play a role in our attitudes about ourselves.


“What do I have to be grateful about with this craniofacial stuff?” (Hey, Mr. Doubt, you had your time. Now go!) Actually, gratitude is a tough one because people are always telling you and I to have an attitude of gratitude about everything in life. Yes, even our cleft lips, cleft palates, Goldenhar Syndrome, Crouzon Syndrome, Treacher Collins Syndrome, Craniosynostosis, and many others.

That’s a pretty tall order. What about being grateful for, um, being alive? Having eyesight decent enough to read this? Grateful for what you and I do have in our lives, even if it is simply food to eat, clothes to wear and a roof over our heads? I mean, let’s break this down to just the basics of life. You and I have lived through some crazy shit. Can we agree on this? I believe so. Gratitude is an attitude, yes. It’s one born out of not wanting to feel downcast all the time. It calls our hearts to want a change. That change starts on the inside. Sorry, the parents-girlfriend-boyfriend-doctors-neighbors group can only go so far.

Gratitude is an attitude that can be cultivated over time. Some days are going to be rock-star days with gratitude flowing. Others, not so much. “Baby steps,” like Bill Murray said in “What About Bob?”


Yes, grief is a normal and natural attitude to have around craniofacial anomalies. Feeling sad and crying about the situation you and I find ourselves in each day, at times, is about all we can do. It does not matter what positive thinking, encouraging words, or even healthy hugs can provide. Nope. Grief overcomes us like a cloak of blackness that pins us down for the 1-2-3 count in the middle of the ring.

Sitting in grief for days, weeks, months and years is what I call a “soul sucker.” That stuff literally takes any initiative and energy toward a better way of life right out of my soul and probably yours, too. I’ve been there. Got the badge. Lord knows, it sucks. Figuratively and literally.

Can grief be transformed into something good? It can be a learning experience to ask questions about the grief. Talk to the grief. No, really. Ask the grief (not The Grinch!) about what’s going on. Why are you in me? What are you trying to say to me? What do you want me to learn from this grief? Answers will not come immediately … well, they may for some people and I don’t want to take out the miracle possibility. If we can transform our grief into an attitude of active movement toward achieving greater things in our lives, then it played a purpose. A deeper purpose than simply leaving us in a dark room in front of hours of meandering through the Internet for unhealthy stuff.

Some things to ponder about grief. I’m not a licensed counselor or social worker, OK. I just want to add this about grief before moving on to our final topic. If you really are stuck in grief and are alone with no one offering you help, then please reach out for help. People are not all strange, OK. There are those who do want to honestly help us heal and move forward with life. I encourage you lovingly and as a fellow journeyer along this craniofacial road to get the professional support you need today.

The Pain of Change

“I don’t want to change.” Yeah, and I have dirty underwear from two weeks ago. If I don’t change it, then how do I smell? Nevermind. 🙂

Hey, making any difference or change in life and doing so with intention is painful. Whether it is making a priority of going to the gym, hopping on a road cycle for 10 miles every day, sharing time with your wife/husband/boyfriend/girlfriend/partner, or just making plans to totally revamp your professional life … there is going to be a wee bit of pain involved because it’s changing what has been the natural rhythm of your personal life. The brain and body get into a groove of going one way, then something interrupts that path and our physical, natural response is to revolt. Don’t wave the white flag of surrender to sit where you are and stay put if that place is not working for you. Wave the white flag when you are ready to surrender one way of life for another one. That, friends, is the start of change … meaningful change that brings joy, happiness and warmth into a suffering heart.

The pain of change lies deep within, yet it can be leveraged into something so positive and good. The way that my face and your face looks may to those on the outside simply not let them see the inner beauty that truly lies within us all. Don’t fall into “the hypnosis of the culture,” quoting teacher and speaker Anthony Robbins here. You and I are better than this and deserve the best that life has to offer. Change is going to be painful. Staying in the same mindset, crappy attitudes and thoughts for year after year … it’s not what you and I are here to do, be and give. We all have powerful stories of strength. We all have powerful stories of truth … our truth that the world is waiting to hear. Turn the pain of change into an engine of goodness, grace and love for others in the world. Know that the change you are willing to make … even gradually … will leave an indelible mark on the path for children and young adults dealing with craniofacial anomalies for years to come.

Every minute counts … and you are loved.