I don't really pray, but I will for him . . .



I Love You Kenneth (2003)

"OMG. I am so sorry. So sad. I don't really pray, but I will for him..."


A friend of mine sent me this message the other day in response to a whining email about the light of my life, my son Kenneth.  I have been on the brink of tears ever since.

I found out that I was going to have a Kenneth when I was four and a half months pregnant with him.  I have a seizure disorder (epilepsy) and had been taking high doses of anti-convulsant medication for several years which had prompted my physicians to put me on two forms of birth control to prevent pregnancy.  One was "The Depo Shot," the other a form of the Pill. 

I went in to have the quarterly (yes, I said quarterly) pregnancy test and recieve my Depo shot and was reading a magazine article about Julia Roberts and Lyle Lovett getting married when my physician and two nurses walked back in with faces that were grayer than chalk.  They proceeded to tell me that I was somehow pregnant, and that the physician felt the pregnancy might be unviable due to my medications and the methods of birth control I had been taking.  I was told to go home, converse with my husband and come back "prepared" for further examination.

OMG.

To shorten that story, we went in, the physcians examined and advised us to abort the fetus. We did not agree with this and three months later our beautiful son Kenneth was born.  He was a perfect little baby to us, and still is that perfect child (weeeellll... you know what I mean!)  The world places labels on him because he is Autistic, and honestly has about 100 diagnoses... I won't mention them all.  The thing I will mention is that when he was two weeks old, his neurologist, Dr. Julia Meyers in Provo looked at him and again told us to give him up.  Her exact words were (I believe;) "By the time he is two or three he will be totally dependent on others.  He will never talk, walk, feed himself, or be able to take care of himself in any way.  You will not be of any help to him."

OMG.

Kenneth is now seventeen and life has been a challenge, I will not deny it.  He did not walk until he was four or five, speech was just as slow (he signed first and I was a Monkey--not Mommy.)  When the deaf community gave him his name they combined the sign for K with the sign for Food because it identified him.  That became the sign for Kenneth.  I liked that.  :)  Food is important in our family-culture. But he is fully mobile, walking, talking, laughing, smiling, eating, swimming.. you name it!  (Bite me Dr. Meyers;  I hope most parents are like us!)

Kenneth hates no one.  He loves the people that laugh at him because he drools, make fun of him when he trips, or says the wrong thing at the wrong time.  When I am crying inside, he is laughing and smiling and making friends with everyone.  I envy him so much it hurts.  Why can't I have those talents?  He is amazing.

Last May he was diagnosed with the onset of Scoliosis.  The doctors told us to monitor it; it was not too severe at that point.  In October he began complaining a bit more of back pain, with more complaining as the months have been passing.  We have seen four specialists in the past six -eight weeks and his spine is no longer slightly curved, it is literally in the shape of an S.  If you look at him from the back without a shirt on, his left shoulder juts out to the left and his right hip thrusts out to the right as though he is a hunch-hip of Logan.  It is so unnatural and painful looking.  I cannot look at him without crying.  I just can't.  This is my baby, my life, I have saved him from everything so far and I can't stop this.  In less than six months his scoliosis has progressed to a 53% curvature-meaning he needs extensive spinal surgery (a non-flexible 8 inch steel rod inserted) before his lungs and heart are damaged beyond repair.  (I cannot say it.)

OMFG!


I've got your back

"OMG. I am so sorry. So sad. I don't really pray, but I will for him..". A good friend said that to me when I told them this the other day.  I cried for an hour (more really- I am crying again right now...)  We have so many decisions to make right now.  We are going to have the surgery done, but what do I do with Butcher's Bunches-THE BUSINESS THAT I RUN BECAUSE OF KENNETH?  Many of you know my dedication to local, but do you know that I am running this business so that Kenneth will be able to have a life when I am not here to provide it for him?  That sounds morbid, but it is the plain truth. 

I am turning to you that read this to ask for your prayers, thoughts, and remembrances for Kenneth.  He will be needing them over the next few months.  His dad and I will to, so that we make the right decisions for him.  He needs to make it.  I won't if he doesn't.  OMG.  I am scared.