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
Oh I am SO sorry!!! I hope you find answers soon! She looks so grown up :)
ReplyDeleteJaymie - You already ARE the best mom you can be for her. That's why she's YOURS! Don't forget that! No diagnosis will change how much you love her or the things you do for her or the fact that you would go to the end of the world and back for her. Nobody's perfect, but there is a greater force that thinks YOU ARE THE BEST MOM YOU CAN BE FOR HER. Enjoy every single second of it.
ReplyDeleteOh Jaymie...my heart feels for you...I know how much you are wanting to know what is going on so you can just deal with it and move forward...it's like the struggles of infertility and the unending wondering and wanting answers and why...Heavenly Father is watching over you and little Henslee and has a perfect plan for all this but for now it can be frustrating...Understanding of why all this is can only come from Him and no one else but I know you know all of this already...Just remember Heavenly Father chose YOU to mother her and care for her. He knew you had been prepared...
ReplyDeleteOh Jamie, I can't imagine how frustrated you must feel. I feel frustrated for you, I'm so sorry:(. All I can think is that Our Father knows exactly who you are and exactly who Miss Henslee is and knows what both of u need and one thing is for absolut sure, u were ment for each other and needed each other. We love you and sweet Henslee and will keep ur sweet family in our prayers. Love you guys!
ReplyDeleteLove this picture of Miss Henslee. She is absolutely beautiful! I'm so sorry you are continuing to have to wait for some more answers. We know that Heavenly Father is mindful of you and Miss Henslee. I heard a quote recently from our Stake President that says "There is no growth in our comfort zone but there is comfort in growth." That quote struck me. Even though we are given challenges we are given the comfort and guidance we need to make it through them. We pray each night that you will receive that comfort. Love you! Wish you were coming this weekend. Hopefully we'll see you soon.
ReplyDeleteI can't imagine having to learn patience the way your family is... You're amazing examples to us!!! Henslee is easy to love ;) She's such a sweetheart. This really is a great picture of her!! We're so excited for you to go to Katie's Clinic! Hopefully you'll leave with the answers you're looking for!! We sure love you!!
ReplyDeleteI can't imagine how frustrating it is to not have the answers you need for Henslee. I'm praying that this appt in Dec will give you something more concrete to go on! Keep up the good work - you guys are amazing parents!
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