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

This one is about: Marguerite's Bouquet


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Marguerite's Bouquet by Marguerite
A viewpoint from a cleft-affected adult

This post was an answer to a post that dealt with "starting all over again".

When I was 18 I had my "last surgery". It was some more plastic surgery to my nose and lip. (I had had many probably 20 or so).

I went off to college, got married, had a child, was pregnant with our second. At 27 I needed to have my bridge work re-done. As it turned out I needed a root canal in the tooth right next to the cleft. He did the root canal and my bridge work. 5 years later we decided to try to close the cleft. When I was single my PS had decided that it was too large to close. Well now I was out on my own and married...in another state, so I decided to try. This meant we had to cut apart the bridge work so we could do orthodontia. I had 2 more years of orthodontia (I had been in orthodontia from kindergarten through 12th grade).

Then surgery failed. I was 34!  But my PS said that in 3 years or so we could try microvascular surgery, and he'd get back to me, which he never did. But I had to have some other dental work done, an abscess (in the root of the tooth that had had the root canal 13 years earlier. This oral surgeon said he really thought the cleft could be closed but referred me to a surgeon that did many more of these.

I had to have two teeth next to the cleft excised out because of the long term infection, the bone tissue was not good enough to support a bone graft. So I am looking into the bone graft for Sept.

I tell you this abbreviated although long enough history to tell you I am a patient that if it can go wrong it seems to. If you think you can get away with one tooth it will be two. If a bridge should last 10-15 years mine will last 7, if you think you know where the nerve in my mouth is, count on not finding it in the "right" place...

Read my post of last week. It's long but I think it will encourage you.

I Stand amazed!

I was so frustrated yesterday. I wrote earlier that I felt I had opened Pandora's box re: the tooth extraction. I felt like I had opened up so many issues that I haven't dealt with in years, and on top of that insurance concerns.

My husband, works for a great company. They have been family oriented for years (Like seriously 100+) My husband has worked for them for 20 years this April. After some intervention by the company dentist they covered some expenses that appeared to be dental but actually are medical... 8 years ago they covered my other surgery, the soft tissue graft, that failed...

After that failed I was told my only option was a micro vascular surgery of about 10 hours worth. My surgeon said he would get back with me when he felt things had progressed enough for that to be a viable option. He said that would probably would take 3 years. Its been 8 and I haven't heard from him...

Two years I ago I had some infection in the area next to the cleft, the 2 teeth next to the cleft had had root canals in them for years, (like 10+). So they had to do a procedure called an apicoectomy, which is cut and ream. Open up the gum above the tooth and ream out the infected bone so it can heal. The oral surgeon at my initial consult asked me if I had ever tried to have the cleft closed. He asked if I'd be interested in trying again. He said that he knew of a procedure that is used that he was sure would close the cleft. I was so excited. I went home and told my sweet husband and he just couldn't understand. It SEEMED like he threw every argument (legitimate or not) at me. He said they were dangling the golden carrot in front of me...

After many tearful times alone, and some wonderful counsel, I came to the conclusion that I would wait for my husband to be ready. Even if he was never ready. This would NOT be something I could do on my own and I love my husband. I respect his leadership in our family and even his love for me. (He told me 8 years after the surgery failed that it devastated him.) He wants so much to ~give~ me this...

So many issue: finances, what about failure, what about complications, all the what if's...

So I waited.

After my dentist spoke to my husband and it had months to settle in, I asked my husband to consider letting me going to Denver to see this oral surgeon just to look at the possibilities. He said ok. I jotted off a note to my local oral surgeon, in a Christmas card, that I was planning a consult to the oral surgeon in Denver.

I was ecstatic!

TWO days after we got notification from my husband's employer that they would no longer cover restorative work for those with birth defects for those over 21 years of age.

I was crushed. I cried and cried. I couldn't understand what God was doing!  So I let go, and the dream began a slow decent towards death.

In October, of the next year, we had to choose if we wanted to go with a HMO or a PPO. I really need to be a part of my health as well as my sick care, and after MUCH discussion my husband finally said that I probably wouldn't be happy w/ a HMO so we went PPO. As we were going to meetings on all the discussion on the pros and cons of both, I happened to ask our Insurance Expert if it was still our company policy to not cover birth defect restoration after 21, and if there was any change in that stance. She said no. Slowly my eyes brimmed with tears as the dream plummeted even further. But she looked at me, and I'll never know why, and she said: But we might look at individual cases. All I could think of is my husband could never fight for it is not his body and he just doesn't understand.

So with final resolution I went home.

But my oral surgeon wouldn't give up, my dentist wouldn't give up, And the dream refused to die.

It was not because I NEEDED the surgery to be whole, or loved or wanted or normal, or accepted. I am in Jesus and in Him I am complete. But God put the dream there. And the dream now flickered.

Finally one day I asked my husband to reconsider. It was the day to do it. I had peace, and a confidence of what to say to my wonderful loving husband, who did not understand.

He likened it to going to look car shopping. (Word pictures are great.) We have NEVER owned a BRAND NEW car. And our old one looked like it was going to bite the dust (Stay with me here) and so we went to look at new Saturns. We looked and talked, our car looked unrepairable. We decided to lease, we had no money to buy and none in the bank. We were going down to sign the papers and the problem was mysteriously revealed to us. SO no new car.

My husband likened the surgery to going out and shopping for new cars when there is no money in the bank. I told him I could see his point about the finances, I can see how tough it is to be the bread winner and want so much for your family. Reliable cars, college coming up for our kids...But I told him you do not know there is no money in the bank (in the surgery case we did not know if our insurance would cover it) UNLESS we ASK!

And I left the ball in his court.

He came home the next day and told me he had talked to insurance. I had worked all day and I was tired. I told him wait till after supper so we can talk about this. I was prepared for rejection and I wanted to get through supper before I couldn't handle it. After supper he said that the surgery would be a covered benefit for me! I sat down and cried and the dream flickered and burst forth in hope and rose.

Now, you all know, until you have the paper in hand and the bill is paid that you can act like you're sitting on pins and needles.

I had gone down to get my tooth extracted and the apicoectomy and there was no pre authorization papers...

But I would not let that stop me. There was too much water under the bridge (no pun intended) to stop now. So I went for it. When the oral surgeon had to take both teeth, I WAS COMMITTED, there was no turning back, now I HAD to have the surgery.

A week later not only did I find out there was no pre authorization for the tooth extraction but there was NONE for the whole bone graft. (I later found out there had been a verbal agreement from the insurance company.) My heart sank.............and I thought, the dream wavered in fear.

I found this out when I was in for my week follow up. Lesson learned: schedule your follow up with the surgeon who did the surgery, wait for longer if you have to...But I told the other surgeon partner, that I really needed the authorization done. Please put a fire under it to make it get done. He said he would be seeing my surgeon the next day (he works in 2 different clinics) and he would tell him.

I was nudged to call my surgeon the next morning. He was quite sure it was done but he would check. I called my insurance provider to get things confirmed on their end. I called the insurance benefits gal at our company and behold the dream rose higher for her and she fixed a conference call and has it all arranged. (but I'll feel better with
paper in hand.)

Out to my garden I went, and I cut Marguerite daisies, and a giant blue delphinium (for the dream had blossomed huge!) and snap dragons (whose little mouth gape open as you squeeze them,) I got babies breath (for the dream had started so little) and carnations (for they are the fragrance of the dream).

I took this to the gal at our company who handles the member benefits. When I opened the door her eyes filled (and so did mine.)

I told her she was part of more than she knew. She said ever since the night we had the meeting she knew she HAD to do something. So she did and she told the big Wigs "this is the spirit of our plan (insurance plan) and they agreed! And that is what she told me today.

And so I cried and I thanked my precious God, who made me this way, to show forth HIS faithfulness and love into my life, and those around me. And now I know the meaning of His dream. It is not of bone grafts or bridges or implants, but of molding and shaping my life. And HIS dream rises on wings of eagles, and His love shall carry to where it shall go!

So take heart, have peace, be strong and of good courage, and His love will carry you where you ought to go!

Marguerite


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