My heart aches for her, my beautiful daughter DeLaynie. No fault of hers she was born with bells palsy, a facial paralysis. Some might think of it not being a very big deal, if you were around her and have watched her grow the way I have over the last seven years you would see what a very big deal it has become for her.
Bells palsy, I will explain a bit of what I know it to be, you might have only heard of older people waking up one morning and one side of there face not moving, most of the time in those cases movement comes back. In my daughters case she was born with this, her pediatrician at the time of her birth thought that it would go away within a week, it did not. She went to all the specialist within the first six months of her life, and in the end for them just to tell me that it could have been caused by trauma at birth or possibly the nerve just never developed. Bells palsy is what they call it when the seventh nerve in the face does not work, the seventh nerve moves your mouth to make it smile or frown, it controls your eye so that you can wink or blink. My beautiful daughter cannot do that, Ive always said she has the Elvis Presley smile, (I love Elvis) anyways her little smile is crooked .. only one side responding to that emotion.
Over the last seven years she has lost a bit of muscle tone to that side of the face so her eye droops just a bit, she suffers from lack of self esteem, other kids ask her questions about what is wrong with her face. It makes her sad, she wants to have a normal smile, she cries sometimes about it, she wants her face to be like everyone else's. It tear's me up inside, to see her cry, to see her pain, as her mother its like I feel it in the pit in my stomach and in my heart.
The plastic surgeon at Children's Mercy here locally in Kansas City said that they really could not do anything for her to fix it, the way that I understood it is that they were continuing research and might have something in the future, I had gone back once a year to see if anything had come about yet that would help her but they kept telling me the same thing. With the trouble she was having after she turned six... with the crying and the insecurity I felt I had to do something as a mother for her, I just could not understand with all the medical technology that was out there that nothing could be done for my daughter, I just did not want to accept that.
I started making phone calls, all over the city to plastic surgeons, explaining my daughters situation and that I was desperate to find someone to help her. After talking to about a dozen different offices, I received a call back from one in particular that had spoken to her plastic surgeon that said there was a surgery, it was called cross facial nerve grafting, he had done the surgery once but not on a child but knew of a surgeon that specialized in this surgery and referred that doctor. This plastic surgeon was located in St Louis, about four hours from me, I of course called immediately, they needed to get all of my daughters medical records and see what doctor would be the one to take her case. I received a phone call a couple days later from the doctors nurse to tell me that they wanted to set up an appointment with the doctor that wanted to take her case on. The only doctor in Missouri that specialized in this surgery for children. One of the happiest days of my life, the day I had hope for my beautiful daughter.
She is now getting ready to go into the second stage of the cross facial nerve graft, its in March. She did really well in the first part, the second part to the surgery is at a higher level of difficulty, the recovery is going to be a lot more than the first surgery but I know that the Lord God above will be watching over her and I have to put my trust in him that going through all of this is not for nothing and that it will work. It will be about 6 months after surgery before we will be able to see that big smile that I have been able to imagine on her face for a long time. Over time if we did not do this surgery, her face would continue to droop and she ... I know...would have such trouble with her own self esteem that it would just kill me to see her go through what I know she would have to deal with. You know...kids are so cruel now a days, they pick and pick and they don't care who they hurt, I just don't want my daughter to be the one hurt, so the sacrifices that we are making are for her future .. .to give her everything that we can to help her become the wonderful person that she can possibly become.
This is my love, my daughter, I would give her anything I could for her happiness and her future. She to me is so beautiful just the way she is, she knows that, I tell her that all the time, no matter what it is what is on the inside is what matters, that is where beauty comes from. I am not doing all of this because I want to teach her that she has to be as beautiful as possible, I know this is something that she needs to have done but in the end, no matter what she is still going to be as beautiful to me then as she is now.
Bells palsy, I will explain a bit of what I know it to be, you might have only heard of older people waking up one morning and one side of there face not moving, most of the time in those cases movement comes back. In my daughters case she was born with this, her pediatrician at the time of her birth thought that it would go away within a week, it did not. She went to all the specialist within the first six months of her life, and in the end for them just to tell me that it could have been caused by trauma at birth or possibly the nerve just never developed. Bells palsy is what they call it when the seventh nerve in the face does not work, the seventh nerve moves your mouth to make it smile or frown, it controls your eye so that you can wink or blink. My beautiful daughter cannot do that, Ive always said she has the Elvis Presley smile, (I love Elvis) anyways her little smile is crooked .. only one side responding to that emotion.
Over the last seven years she has lost a bit of muscle tone to that side of the face so her eye droops just a bit, she suffers from lack of self esteem, other kids ask her questions about what is wrong with her face. It makes her sad, she wants to have a normal smile, she cries sometimes about it, she wants her face to be like everyone else's. It tear's me up inside, to see her cry, to see her pain, as her mother its like I feel it in the pit in my stomach and in my heart.
The plastic surgeon at Children's Mercy here locally in Kansas City said that they really could not do anything for her to fix it, the way that I understood it is that they were continuing research and might have something in the future, I had gone back once a year to see if anything had come about yet that would help her but they kept telling me the same thing. With the trouble she was having after she turned six... with the crying and the insecurity I felt I had to do something as a mother for her, I just could not understand with all the medical technology that was out there that nothing could be done for my daughter, I just did not want to accept that.
I started making phone calls, all over the city to plastic surgeons, explaining my daughters situation and that I was desperate to find someone to help her. After talking to about a dozen different offices, I received a call back from one in particular that had spoken to her plastic surgeon that said there was a surgery, it was called cross facial nerve grafting, he had done the surgery once but not on a child but knew of a surgeon that specialized in this surgery and referred that doctor. This plastic surgeon was located in St Louis, about four hours from me, I of course called immediately, they needed to get all of my daughters medical records and see what doctor would be the one to take her case. I received a phone call a couple days later from the doctors nurse to tell me that they wanted to set up an appointment with the doctor that wanted to take her case on. The only doctor in Missouri that specialized in this surgery for children. One of the happiest days of my life, the day I had hope for my beautiful daughter.
She is now getting ready to go into the second stage of the cross facial nerve graft, its in March. She did really well in the first part, the second part to the surgery is at a higher level of difficulty, the recovery is going to be a lot more than the first surgery but I know that the Lord God above will be watching over her and I have to put my trust in him that going through all of this is not for nothing and that it will work. It will be about 6 months after surgery before we will be able to see that big smile that I have been able to imagine on her face for a long time. Over time if we did not do this surgery, her face would continue to droop and she ... I know...would have such trouble with her own self esteem that it would just kill me to see her go through what I know she would have to deal with. You know...kids are so cruel now a days, they pick and pick and they don't care who they hurt, I just don't want my daughter to be the one hurt, so the sacrifices that we are making are for her future .. .to give her everything that we can to help her become the wonderful person that she can possibly become.
This is my love, my daughter, I would give her anything I could for her happiness and her future. She to me is so beautiful just the way she is, she knows that, I tell her that all the time, no matter what it is what is on the inside is what matters, that is where beauty comes from. I am not doing all of this because I want to teach her that she has to be as beautiful as possible, I know this is something that she needs to have done but in the end, no matter what she is still going to be as beautiful to me then as she is now.
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