You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: When the Kid Says, "No Way! Not Again!!"
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WHEN THE KID SAYS, "NO WAY! NOT AGAIN!!"
by Joanne Green
He's eleven years old and has had ten surgeries. Each one a hurdle for him, a heartbreaker for you. Lip repair, palate repair, revisions, rhinoplasty, bone graft, etc. And now the surgeon says "Let's do one more, and the kid says, 'NO'!
This happens, and when it does it is heart-rending for the parent. Under the best of circumstances it is difficult to subject your child to surgery-after surgery, but at least when they are little, we tell ourselves that he would WANT it. But when he looks you dead in the eye and says, "No, I DON'T want it," it becomes near impossible. I know, because I have already faced it.
I have three children - all with cleft. My boys are now both nine. Joey had a severe bilateral cleft and so has had more surgeries than Jacob, with his standard unilateral cleft. Recently, Joey reached the point where he has decided that he has had enough surgeries and does not need any more.
Our "rule" has always been that when a surgery is for function, the child has no choice whether he will have it done or not. If it is preparatory for a function surgery, again, having it or not is not an option. But if it is done for cosmetic purposes only, it is largely up to them. In fact, it was Joey who, a few years earlier, adamantly pursued a rhinoplasty.
Well, this past summer Jacob had his bone graft surgery done, and he submitted to it readily. At that time Joey announced that he will NOT be having that done himself. I responded, "Not this year son. You will have this surgery next year." (Joey's whole schedule seems to be behind Jacob's even though they are the same age.) He looked at me and tears welled up in his eyes. "But I don't WANT to have it." he said. Yes, it broke my heart. In fact, it cut right through me.
We sat down, and in my most matter-of-fact tone I told him, "Joey, the bone graft surgery is one that you need. Without it, you will eventually lose your grown-up teeth, and we don't want that to happen. It is not a choice of IF you will have this surgery. But you do have some choices.
"You can choose WHEN you have it - as long as everyone else agrees. You can choose the foods you will have afterward that will fit into your liquid diet. You can tell the doctor that you do not want to use the mask to go to sleep. You can help me choose what to bring with you to the hospital. But you cannot choose whether or not to have the operations, because it is one that you need to have."
He balked, "But WHY?" and I was careful not to give in to my emotions at that time (the emotions that were slamming against mental walls and crying out at a cruel world that would inflict pain once again on my sweet baby), and I simply and clearly said, "Because you need this operation to help finish fixing your cleft lip and palate. We have come a long way, and we are almost done. Now is not the time to stop."
Joey was silent on the issue for a while (he's my "old soul" - very introspective at times) and a few days later at the dinner table, out of nowhere he looked up and said, "Ok. I'll have a bone graft surgery. But I want to have it next summer. And when I do, Mom, can I have banana milk shakes?"
Basically I gave him no real options as to whether or not the surgery would take place. It would. It was something he simply had to do. There are a lot of things in our kids' lives we give them no options about, and having necessary surgery is one of them. But I DID give him the option of control.
While he could not choose whether or not to have the surgery, he could control how and when he would have it - to the extent possible for him. Issues he can control include who he tells and doesn't tell. What to pack in his hospital bag (the kids have helped me pack since they were big enough to grab a toy and throw it in the bag), how the doctor will put him to sleep (Joey in particular hates the mask), which parent will meet him in recovery, what sorts of foods will make up his liquid diet (we even go grocery shopping together the day before surgery) what videos will be home
waiting for him during the convalescence, etc.
I am honest with my children and totally up front and matter of fact. Some things can be negotiated. Other things cannot. The most important thing I can do for myself and my son is to divorce myself from my own emotional battle. It's a difficult one we wage, and so easy to forfeit. I do not need to see my son cry over an upcoming surgery to feel myself pulled emotionally. I am already there. But this is the time that he needs my strength and my resolve, in order to help strengthen his own.
None of us have a yes-or-no option over all aspects of our lives. There are many things in my life that I do whether I want to do them or not. The same is true for our kids.
So, he's eleven years old and has had ten surgeries. The doctor says Let's do one more, and he says, NO! If it is for looks, maybe it really is his choice. If for function, it is not. But even if he cannot choose yes or no, it does not mean he has no choice. You simply give him the choice of how he is going to say yes.
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