So, I have put off this post for as long as I think I can. This post may be a bit overwhelming and heavy but, if I can take it so can you.
From my previous post, just after Norah was born, you may know that she has a squeeky little cry, can take a very long time eating just a small amount and is having a hard time gaining weight. In the hospital the nurses and doctors were concerned with her low muscle tone, lack of wanting to wake and feed and a few other things. Our pediatrician suggested that we have some genetic testing done. Just over two weeks later the pediatrician stopped by one evening, very unusual, to tell me that there was a genetic disorder and it was most likely Prader-Willi Syndrome. Colin wasn't home. He was working an overnight Life Flight shift. Thankfully my dear mother-in-law was. I am not sure what I would have done if she hadn't been there with me.
The doctor tried to go over what this meant and gave me some literature. I tried really hard to be brave in front of her. She was very, very sweet and kind. I kept telling myself I could handle it and I didn't need to loose it. I didn't. My mind was a blur. My kids wouldn't stay in bed. I was crying as I was trying to put them back to bed. They were worried. All I could tell them was that Norah was sick and I was worried about her. After the doctor left I just sobbed and sobbed. Debby held me and sobbed with me. I will never forget that night. All I could do was hold my precious baby girl and cry. I have never cried so hard in my life. How could this be? The words "Prader-Willi Syndrome" just kept coursing through my mind over and over. I hated them.
I somehow got myself to bed. I fell asleep with Norah cradled in my arms. My precious, precious baby. I was so sorry. I was even more scared. I couldn't bring myself to call Colin. I knew he needed to be focused on work if he got called and if he wasn't, then he would sleep well enough to deal with the news in the morning. I knew I would need him.
The next morning was so hard. I felt so awful from crying so much. I looked even worse, not that I cared. When Colin came home I wanted to be brave but knew I wouldn't. I gave him the papers and began sobbing all over again. He just held me. I just needed him to hold me.
Our appointment with the geneticist was that day too. The counselor was so sweet and the doctor was too. I cried the whole time. They explained so much to us and it was all very overwhelming for me. We had lots of stuff to read. I just couldn't. It was too hard.
I cried for about three days. Every time I talked about it with Colin, when my friend called me to find out about the appointment, whenever I talked about it with Debby, when my friend dropped Mia off from school, when my friend Debbie called to offer compassionate service. I cried so very hard when I talked to my sister and even harder when I talked to my mom and then my dad. They cried with me and a part of me felt better, lighter. I knew I wasn't alone in my heartache. My emotions ran the spectrum. They sometimes still do. I was sad for my baby girl, for the life I once thought she might have. I was sad for myself, for my family.
I have never prayed so hard or relied on my Heavenly Father, my Savior, Jesus Christ and the Holy Ghost so much at any other time in my life than I have since we learned of Norah's diagnosis. I have, with absolute surety, felt myself lifted and carried by a loving Father in Heaven. There were times that I was sure I was going to loose myself in panic and fear but when I asked for help and comfort my fear left me as quickly as it came. I would often, when alone in the car, sing the hymn, "I Need Thee Every Hour." Oh how I needed my Savior to know that I would need Him. I would have to sob my way through. The words gave me strength.
