You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: All Aboard


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All Aboard! Our cleft-repair journey is much like a bus ride

Analogy by Dana Vogel

Cleft-Talk is a major part of the Wide Smiles network. We function as an online support group - connecting families from all over the world at at various points in their experience - all sharing the experiences common to cleft repair. Many familiar subjects come up all the time. One such subject revisited over and over is the question of whether or not cleft is a big deal in the over-all scheme of a person's life. Cleft-talk member, Dana Vogel posted the following beautifully insightful response. Her observation and analogy could be applied to any support group structure. I encourage support groups everywhere to share this analogy in group for discussion.

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A similar thread to this (cleft a big deal?) was brought up a while ago. I guess it has been at least a month, maybe six weeks. At that time, the issue was more along the lines of getting beyond the cleft - letting it go and getting on with our lives. There was the feeling then that perhaps parents were focused on their own emotions, such as grieving the loss of the imagined child, learning to love the child they have, and expressing the frustrations of dealing with health issues, feeding problems, and rude comments from ignorant people.

Now we have a perception (brought up by one list member) that the parents may not be thankful for what they have and instead dwell on the negative aspects of their and their children's situation.

As I have pondered these comment, I feel that I understand some of what may be perpetuating the feeling that we are not getting beyond the more basic issues of guilt, surprise, loss, feeding, nursing, lip and palate repairs, learning about cleft, and learning how to deal with the complexities of child rearing (and having a child with a facial difference 
to boot!)

Imagine you are riding a bus, but you don't remember which bus it is, how long you've been on it, where it is going, or when you will reach the end of the line. Have you ever fallen asleep on a bus and awakened in a panic, trying to figure out if you had missed your stop, how far you are from it, or which bus to switch to in order to get to where you need to go? I have, and having a child with a cleft is sort of like that feeling.

Through choices of adoption or pregnancy, you anticipate what the rest of your life will be like with this new child. (You're on the bus now. You are enjoying the ride, the people, the scenery....everything is okay.) There are no surprises and really nothing that you think you can't handle. The big day arrives and you are presented with the unknown of a child with a cleft. (You have been lulled to sleep by the motion of the bus and the pleasant journey. You are not thinking that there will be a problem. After all, you have ridden the bus before. Lots of people have, and 
nothing has ever happened to them.)

Now you are scrambling to make sense of the change of events. What does it mean? Surgery? What? When? How? Where? Who? What do you mean feeding a child with a cleft is difficult and nursing even more challenging??? What do you mean my child might have other problems ? (How did I get here? Have I missed my stop? This neighborhood isn't so nice. I've never been here before. And the people are different. Some of them don't look so nice. They are watching me. Were is my purse? Did someone take it?....)

So you start talking to people. You begin to figure out where you are and where you are going. You discover you haven't missed your stop, but the bus had to take a detour. You get to know some of the people around you and together you figure out what is going on. They fell asleep too, or maybe someone suggested they take this bus and it wasn't the greatest advice because it isn't the most direct route. They you meet someone who has actually ridden this bus before AND had to go through the same detour. What a relief. You're not alone: still a little worried, but greatly reassured.

That's kind of what support, such as cleft-talk is. Some people have been on the bus longer - some have to take the cross-town transfer and have a very complicated route. Some get off the bus only to find they need to be on the same bus again. And some  people reach their destination earlier than others. But each person that gets on the bus has the same basic questions which need to be answered before their mind is at rest and they can plan what to do next.

We get new members joining cleft-talk (and any support group) every day who need and want to share their experiences and who are looking for someone who has ridden the bus before. Each person who contributes needs to be reassured and needs to be able to ask their questions. Some of the questions are new and some have been discussed by the group before.

Each participant needs to go through the emotions. It's the first time they have shared something with all of us, but it may not be the first time we have heard it. After all, some of us have been on the bus longer. Some of us are even comfortable giving suggestions to the driver as to a better route to take - one that is less bumpy and not so traumatic. Suggestions which everyone appreciates. Those who have been on the bus longer reassure the rest of us that the ride, while inconvenient at times, really isn't so bad because in the end you get where you need to be. So if it feels like the same issues are revisited (on cleft-talk or in any support group) it's because they are. And they are explored and revisited until understanding and reassurance is reached for those asking the questions. But by the time that happens for one person, we have other new members who need to ask their questions and receive the benefit of the knowledge of the group.

This must be a dynamic inherent to a support Group. I don't know for sure. I've never ridden this bus before. But I can say that I have appreciated the help from my fellow riders, that I have learned a lot about life from you all, and that I'm sure glad I'm on this bus with you, instead of walking alone on the side of the road.

With love and a smile,

Dana (Evan's mom)


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