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

This one is about: Our Kindergarten Experience: Less than a Storybook Tale


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Our Kindergarten Experience: Less than a Storybook Tale
by Joanne Green

Jacob and Joey started Kindergarten on the same day. They were in the same school, but not in the same class. That is not the way I wanted it to happen. Jacob and Joey, though not biological twins, have been brothers since they were small babies together. I call them my twins by adoption, being only 70 days apart in age. (My "twins with wombs of their own") They are not only adopted and 'almost twins', but they do not look like me. I am of European ancestry, they of Asian. And they were both born with clefts.

Up until that time they had been home with me. I had enrolled them in a preschool program and then volunteered often in the classroom. I had always been around to field the questions that invariable came up around them: "Are they twins?" "Are they yours?" "Are they brothers?" and the one I always hoped to avoid but never did, "What happened to their lips?" All of a sudden they would not have me there to answer those questions. They would be on their own for the first time.

I strongly believe that the twin relationship is about the strongest relationship that will ever exist. And while I think that it is fine to separate twins in a learning environment, I feel that the first time away from Mom is not the time to do it. To take a twin away from Mom and away from the other twin is to strip him bare. Add to that, in this exposed condition, my children could be barraged with questions and comments that may be uncomfortable for them. I requested that they not be split up their first year of school, but evidently my reasons were not compelling enough to the administrators who never had twins, and they denied my request. And so we started the year in a less-than-optimal way.

Jacob fit right in immediately. But then, Jacob is of the opinion that he is the standard by which all others are measured anyway. Rude questions just don't register for him, and I guess because of that attitude, few rude questions come his way in the first place. Not so for my little Joey.

Joey not only had the misfortune of having been born with a very, very severe bilateral cleft, but he had had a complete lip revision only one month before school started. The new scars had not faded as well as we had hoped and he faced the prospect of starting school in a class of 30 strangers, and he with bright red scars. We bought some cover make-up and the redness could be hidden. But the deformity itself was still there. His lip still protruded and his nose was still flat. And he was alone.

I stayed close to the school that year. The first two weeks were hard for Joey. The other kids were not rude. They just didn't know how to be. It was not long before the other kids knew that Jacob in Mrs. Howard's class and Joey in Mrs. Canclini's class were brothers. And they were immediately recognized as twins. (Ours are one of four sets of multiples in their grade level at their school!) And they learned that that white woman was their mother. And we got through all of that. (One little girl ran up to me and said, "Is that your son?" I said, "Yes, he is." she said, "He don't look like you," to which I replied, "No, he doesn't." She ran off to play.)

But the real problem was Joey's. The other kids just didn't know how to react to his disfigurement. They would be playing and he would run up to them and they would stop playing. He would say something to one of the kids and the child would just stare at him. He felt the sting of what felt like rejection and he clearly did not have the skills yet to handle it.

I cannot express with words how deeply it hurts to see your child suffer the rejection of others, and to feel powerless to do anything about it. I hoped that if the other kids saw my great love for him, they would find him lovable too. I hoped that if they could accept Jacob they would be more open to Jacob's brother. But those things didn't happen and my son felt utterly alone. Even his twin - his all-the-time partner and ally had been taken away.

When the second week of school began I noticed one morning that Joey was not getting ready for school. I went to his bedroom to hurry him and I found my baby sitting on the side of the bed with big tears silently rolling down his cheek.

"Joey?" I asked, "Aren't you getting ready for school?"

He looked up at me with a look that broke my heart, and he said, "Mommy, please don't make me go to school again. Please."

I put my arms around my boy and I cried too. I cried because of the injustices that there are in this world: the injustice that he had to be born with a cleft at all; the injustice that the school administrators felt they could make better parenting decisions for my children than I could; and the injustice that those other kids could not see past the bumpy lip and the flat nose and see instead the beautiful heart that beat in the chest of that beautiful child. After a minute I kissed his forehead and I squeezed him tight. I told him I would go to school with him, and somehow we would make it better.

At school that morning I took his teacher aside and said, "Joey is having a problem. The other kids will not play with him. They don't know how to react to him, and it is hurting him deeply. I see real potential here for school phobia to develop. I need to talk to the class and help them to understand." The teacher thought for a moment and said, "Rather than do a random drawing of all the kids' names, why don't we make Joey the first 'Beary Special Student' next week. Then you can talk to the kids." I agreed.

That Friday Joey's name was "drawn", making him the first Beary Special Student of the class. The Beary Special Student brings a poster of his first four years of life and some of his favorite toys to share. The parent also writes an essay telling the class some special things about that child. We did it a little differently. I came to deliver my essay in person.

On Friday I wrote the essay that I would later tack to the poster. Then Joey and I chose together which of his baby pictures he would include on the poster. At first he rejected the unrepaired cleft pictures. I understood and did not encourage him to change his mind. Then I read the essay to him. After hearing the essay, he chose a pre-surgical picture to add to the ones he had already chosen. We arranged the photos we had selected, a long with the essay, a sun-catcher he had painted, a Korean Maedup and the little American Flag he was presented with on the day he became a US citizen onto the poster board. He was happy.

Monday morning we headed to school. The teacher introduced me to the class (they already knew who I was) and introduced Joey as their Beary Special Student. We presented our poster. Then I spoke with the class. What I told them went along these lines:

"Hi. I think I am the very luckiest person in the whole world. I am lucky because I got to be Joey's Mommy. And that was not something that happened automatically, either. You see, Joey did not grow in my tummy.

"Joey was born a long way away, in a place called Korea. And he needed something that you already had. He needed a Mommy and a Daddy. And you know what? It just so happened that we needed a son! And so when Joey was only one year old, he flew on an airplane all night and most of the next day, just to get here so I could adopt him. 'Adoption' means that I am his Mommy, but he didn't grow in my tummy.

"There's something else about Joey that a lot of people have questions about, so I'm just going to tell you. When Joey was born, it looked like his lip was broken. It wasn't REALLY broken, it just didn't grow together when it should have before he was born. So the doctor had to help it grow together by giving Joey some operations. Did you know that at one time YOUR lip looked broken too? It did. But that was before you were born. By the time you were born, your lip had grown together, but Joey's had not. Joey had what they call a 'cleft lip and palate'. That means that his lip did not grow together by itself and the Doctor had to help it grow together with an operation.

"An operation is a big cut that the doctor makes. And any time you have a big cut, you get a scar. Joey has scars on his lip because the doctor had to make big cuts to make his lip grow together. You have to be very brave to have an operation, too, because operations hurt a lot. Joey must be very, VERY brave, because he has had FIVE operations!" At that point every little jaw dropped and the class turned as one and looked at Joey with new respect.

I went on to talk about other aspects of Joey. For instance, Joey loves to cook and can make cookies all by himself. And he enjoys drawing pictures and painting. When we went over the photos the kids learned that in his five short years, Joey had already flown on a plane and ridden on a train, a big bus and ship. Their respect for him grew.

Then the next day I came back to class to read one of the children's books that I (Joey's mother) had written. Those other kids had never known anyone before who had written a book. But their friend, Joey's Mother had written five of them!

Finally, Joey brought cookies to class that he had made himself. He gave each child a cookie and the recipe (on construction paper cut-out cookies). That evening many of those kids ran into their kitchens to tell their moms, "I want to make cookies like Joey!" Many of them still use that same recipe. They all call it "Joey's cookies".

After that day Joey found it a lot easier to make friends. In fact, we had another problem for a while - EVERYBODY wanted to be his friend. The poor kid couldn't be alone when he wanted to. But over time, things evened out and Joey was wonderfully and openly accepted - almost embraced - by the others in his grade level.

The next year Joey and I and a few of his friends were waiting for his teacher outside his first grade classroom before school started. A third-grader came by and began waiting with us. After a while the third-grader pointed at Joey's lip and said, "What happened to him?" I saw Joey shrink a little inside and look down. His friend threw her arm around his shoulder and said, "There's nothing wrong with him. He was born with that and the doctor is fixing it. Joey is my friend." Joey beamed and I fought back the tears. They understood - they really did.

Things are not always rosey. The second grade was a little tough for him. Jacob was "Mr. Popularity" in the second grade and Joey had his few good friends. And at times he blamed his cleft scar. I think it was in the second grade that he truly grew to understand what I meant when I would tell him that I could make some of the hurt to go away, but I could not make the cleft go away.

This year Joey has once again come into his own. He has a best friend that I think will last a lifetime (I joke and say that He and Carl are as close as Timmy and Lassie!) He has friends whenever he needs them or wants them. And only this last week he commented that he has lots of friends again. Then he rubbed his finger across his upper lip and said, "And this doesn't matter to them anymore." It took me by surprise. I had thought that it hadn't mattered for a long time. But to him it did, and in some part I have grown to accept that it always will.

When it comes to our kids we parents lack two things we sorely miss: a magic wand and a crystal ball. There are times I wish I could wave it all a way. There are times I wish I could see ahead and be certain that everything will be fine. But we can't do either, and so we function as parents under that handicap. And I think that for the most part, and most of the time, we do pretty well.

There is a reason it has taken three years for me to write this article. It is the hardest article I have ever written. I have had to stop three times already because I was crying too much to continue. Sometimes there are limitations as to what we, as parents, can make better. And it is difficult to accept that.

But the most important thing is that, through it all, Joey has known that he has his greatest ally in me. I will always be his champion. And he will always be my hero.


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