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Receiving the second Fragile X Syndrome diagnosis



     
Second Diagnosis



Sometimes It feels like life is testing us to see how much we can handle before we break.
The waiting room visits continue, the sadness after each and every diagnosis never ending.
3 months after Emmett's  FX diagnosis we received Amaya's FX diagnosis too.
Once again same clinic, same doctor, but not quite the same feelings. Their was no way FX can hit us twice I told myself. I had researched Fragile X Syndrome in girls and most of the information was that they were carriers. I had told myself that the worst case scenario would be her being a carrier like myself. God couldn't be so cruel and do this to us twice.  I kept begging God not to do this again but it was obvious my heart already knew what was coming.
 I was hoping the odds would be in our favor, but boy was I wrong.
Amaya not only tested positive for Fragile X but she has the Full Mutation.
I was pretty much heart broken again.  I asked myself so many questions.
Why us again?
Would she has similar difficulties as Emmett?
How would I raise two children with FX?
How did I not noticed sooner?
So many questions went through my head that day, but the geneticists reassure me that girls with FX can live a full life, go to college, have a career, drive a car, get married etc. I believe it was at this moment that I realize that God indeed did this to us again.
Juan was just as surprise as I was. He was speechless this time around. Juan asked the geneticists if he was sure and he told him their was no mistake and showed us the labs. A we saw does numbers we felt so lost. We walked out of the clinic for the second time heart broken.
Shortly after driving away Juan and I were down the street from the clinic when Juan crashed into the car infront of us. It was a minor crash and no one got hurt except for my car. I had asked him if he was ok to drive and he had told me he was.  He was distrated thinking about Amaya having Fragile X Syndrome. Two kids with Fragile X Syndrome he said wow! I knew at that point that we needed to take a few minutes and let it all out because we  were both not ok. We were disappointed in God, and in life. We drove to church and screamed at God for a few minutes and went on our way.
I truly don't believe God gives special kids to special parents. I hate hearing people tell us this over and over again. I sure the heck don't feel special I felt like I was being punished over and over again.
I realized that no matter how much you try to prepared yourself to hear these news you are never prepared for how it feels.
As the months go by I've come to realize that both of my kids are perfect and although they both have Fragile X Syndrome I will not let a diagnosis define who they are. I will come up stronger than ever and I will embrace all the positive and negative obstacles that come with having Fragile X. I will ask God to give me the tools, and strength to be the best Special Needs parent in this world.
Amaya is one of the smartest, caring, and lovable individual I know. She has taught me the real meaning of life. She works so hard each and every day. The odds do not define her. Although sometimes her anxiety is way more than she can handle she always gives it her all.

                                       Amaya's Update:

Amaya is very high functioning the complete opposite of Emmett. She is a 2nd grader that is  mainstream and is fully included at her school. I moved her to a smaller school setting at the end of Kindergarten because the bigger school setting and large environment was to overwhelming for her. She was having a difficult time making friends and she was performing below her ability due to social anxiety.  She did have some speech delayed as a toddler, but was denied services at the time. Ofcourse I was told I was an over reacting first time parent and I believe it. But I guess now it all makes sense. At the moment the only FX related issues she is having is severe anxiety, extreme shyness in unfamiliar places or situations which is very common in girls with FX. Ive often get asked by doctors why is she so high functioning? I truly believe that her positive environment and her participating in HeadStart since the age of 3 helped her tremendously. Amaya and I have always address any learning challenges head on. For example she was having a hard time learning her ABCs as a toddler I spent the whole summer teaching her and making sure she exceeds all her challenges.



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