Post 999......

  I can't believe I am about to post my 1000 blog post. How can I have that much to say????? Oh well, it might not have been riveting, but it was real, and honest and totally true. This is the legacy for my kids. My feelings, the events, the struggles, the joys. All of it, in realistic black and white. I can never convey how much I love these kids. That is not possible. No way. No words describe that kind of love. Fierce and protective, total and complete, deep and encompassing. I really have no words that fit.

  Ahren.......Genetic testing results. I had high hopes for this set of testing. I wanted so badly for an answer. Some direction for us to go. Unfortunately, the genetic testing only covers 126 known mutations. It does not look for insertions, deletions, or duplications. It leaves a huge amount of genetic errors out. Ahren tested normal for the known mutations. We already knew that he did not fit into any known category. This just confirmed that.

  Several times recently people who do not know us well have commented that he seems totally normal. They look at me as if I am TRYING to find something wrong with him. Like I am a monster who needs the attention a sick child would bring. It hurts me so much. You have no idea.

  If they lived with him, they would see him fall many times a day, hurt himself and struggle with normal activities. They would see that his speech is worse than before. That he won't try and eat anything that requires chewing. That he cannot do what he did 6 months ago, he cannot keep up, he cannot participate.

  He has no reflexes below his hips. None. They pound and pound and no response. He drools, he struggles, he tries so hard. He looks so happy and normal, but he is not. It just keeps getting worse. My heart aches to help him, to protect him, to make him complete. I love him so very much. He is not normal, no matter how he appears. Do not expect him to be normal. He just can't. My sweet boy......