Portrait of a Hero - Karen

This is my first over the phone interview...talking with Karen about her experiences live was an exciting way to interview...in the past it was done via email. While visiting with Karen, she kept saying that she doesn't feel heroic, she just did what had to be done.  I think this is how most of us feel.  Her down to earth feelings capture most of us and our own feelings.

             What is the handicap your son is dealing with?

Daniel was born with genetic Fragile X Syndrome, which is a defective X chromosome. He is now 22 years old. Symptoms are similar to those that are autistic.

 (Daniel)

As a parent, how has his illness affected your life…Where do you get your desire to Rise Above?

      Because Fragile X is genetic, and I was diagnosed as the carrier, Daniel is our only child.  Due to Daniels hyper-active nature, he became too difficult to handle at home and my health began to fail.  I began getting panic attacks and  it became increasingly more difficult to take care of myself properly.   After much sole searching my husband and I decided to place Daniel in a care center at age 5.

              (Karen, husband Tom, Daniel)

      These are some of the feelings I had during this time...mixed emotions, I knew I needed help to raise him, but what’s the matter with me, how come I couldn’t make him better, I’m his Mom, I should be able to do this by myself.

I felt sad that I carried the bad gene. It must be my fault.   The decision to not have more children was worse than having a Handicapped child. I went through much pain and agony with the decision to have my tubes tied. 

The night before surgery I had a very special and spiritual experience where I was told that my decision was okay and that I would have more children later on. (Note: the LDS religion, also known as Mormons, teaches that during the millennial reign of Christ, parents will be able to have the children they desired on earth, but were unable to have.)  This gave me the peace I was seeking.  Looking back now, from beginning I had been given promptings from the Lord to not have more children but I fought those promptings and argued with the Lord that that can’t be right…my own stubbornness made it harder for me to submit to the Lords will. Surly this is true for everyone else, but not for me.

Even my religion taught that if there are risks it was okay.  http://lds.org/study/topics/birth-control?lang=eng&query=birth+control  I had to realize that if it was okay for others, it’s okay for me too.

 After placing him, Daniel improved dramatically.  But for me, the life of suddenly being independent was a strange adjustment.  I didn’t know what to do with my freedom. I spent a lot of time walking around in a stupor. 

I began attending  a grief counseling group which helped me, tremendously, deal with not having my son…

I received confirmation from the Lord that with all these trials, to hold on there will be a prize in the end.  The Lord gave me experiences to fill in the void, such as my wonderful nieces and my school students.  (Karen is a school teacher)

 Have there been certain people that have helped you along the way?  What was it you appreciated the most from them?

     I was also working during all of this, so after he got placed I had work to fall back on. 

Other ladies would help out by watching him once in a while. Then I found a day care that specialized in special kids.  They were so helpful.

     Ken Moses was the grief counselor for the group for people dealing with handicapped children.  I learned a great deal of things from him and this group.  During this whole experience I have  met so many professionals that were fabulous. Grateful for people have dedicated their lives to helping. 

        

       On my blog I Made It Through The Rain, I have a post about 'My Angels Among Me'.  I hope you take time to follow the LINK and read about this special couple, Lori and Corey!

              

  What have you gained from being Daniels Mother?

Charity, Christ like love, and patience.  It has made me a better person.  Daniel is one person that I can love unconditionally.  He has helped me with that.

I feel that I was prepared beforehand to be Daniels mother.  From a very young age I was drawn to people with handicaps and I never felt uncomfortable around them. My Dad even recognized the ability I had and commented on it.

 (Karen and her brothers)

After graduating from High School, I attended Brigham Young University. I had planned to major in speech therapy, but I felt like someone was taking me by the shoulders and leading me to change my major to Special Ed, which I did.

Deep down, I feel that in the pre-mortal life, I agreed to be Daniels mother, knowing that he would be physically handicapped.  I agreed to love him and accept him.

Although I carry the Fragile X gene, I don’t have all the effects myself, but I do have some of the emotional effects.  I fight with yucky feelings of wanting to sit back in a corner and feel sorry for myself.  I’ve pushed myself to lead a normal life.  I am a school teacher and I also am in the local Presidency of my churches Relief Society.

I'm glad I  had Daniel, even though it has been difficult, I would not give him back and have normal child instead. He was very happy as a kid and still is. Daniel is a sweetheart. I would like to knew why he was made the way what he was, and look forward to learning more about who my son really is.  (Note: LDS believe that we existed as spirit child of our Heavenly Father before we were born and that we will be resurrected with a perfected body).

(Karen and Daniel)