Wednesday, September 12, 2012

Test results are in

Last week I received a call from Henslee's Geneticist.  My heart raced as I listened to the message she left me telling me that the Test Results came back NORMAL and to call her back if I had any questions........................UM..............???? Well  I am mad, sad, confused, frustrated, shocked, incredibly shocked. Are you surprised at my feelings regarding the possible diagnosis for my daughter??  I had prepared myself  all month for the phone call telling me my daughter had Rett Syndrome. Because after all the research, endless nights reading about Rett Syndrome, Blog stalking of girls with Rett Syndrome, meeting a beautiful little girl with Rett Syndrome and watching videos of girls with Rett Syndrome, Jesse and I both feel very strongly about this being Henslee's diagnosis. Do I want it to be Rett Syndrome? No, No, NO!! Nobody in their right mind would ever wish this upon their worst enemy. I am beyond crushed, incredibly sad and my heart is just breaking thinking that this is what Henslee has to live with for her beautiful little life here on this earth. I can see everyday how much this affects her. But do I think this is what it is??  Absolutely.  I need answers. I need to know the very best way to handle the new "issues" that are thrown at Henslee every day!! I need to know those things I need to be prepared for. I need to know what Medical treatment Henslee needs or could need in the future. I need HELP! I know a diagnosis can at least give me some direction to go in.  A  small percentage of girls with Rett syndrome are clinically  diagnosed. Which means the Dr diagnoses off of  symptoms vs. blood test. We are scheduled in December with an amazing clinic that specializes in Rett Syndrome called  Katies Clinic We hope that they will be able to give us some much needed answers. I love my little Miss more than words can say. I need those answers so I can be the best mom I can be to her. So we will wait again. Try to be patient again. Try to learn and understand the things Henslee is dealing with. Throughout my life and throughout the different challenges Jesse and I have faced including infertility, adoption and now these current struggles. I feel like I have had multiple times in my life where I could learn patience and maybe I have a little bit. But wow more than ever I am needing to learn this most incredible Virtue.


Life is full of difficulties, some minor and others of a more serious nature. There seems to be an unending supply of challenges for one and all. Our problem is that we often expect instantaneous solutions to such challenges, forgetting that frequently the heavenly virtue of patience is required.
- Pres. Thomas S Monson