Personal Note

I thought I would post a picture of Nicolette's dad and me prior to knowing Nicolette's condition. When we found out we were expecting, there was so much joy. Joy to make a little person that no two other people in the world could possibly make. Joy of knowing we could raise this little person to be anything she wanted to be. And there was also fear, fear of not knowing if we would be the best parents. Fear of knowing that she would fail at times, be hurt at times, maybe not have a date to prom at times, and maybe be lost a little at times. We had faith that our love for each other would transfer to this little person and that would have to be enough. Isn't that much much more than what some kids have?

When we found out she had an abnormality in her brain development, we were crushed. After reading everything I could get my hands on, we realized that she would always have special needs. This wasn't a condition that would ever "go away". Maybe she would be lucky enough to have mild delays, maybe the world-for whatever reason-would rest her on the profound end of the spectrum. As a SPED teacher, I finally realized what each parent in my room had to realize at some point.... the death of a dream. Nicolette may never go to prom, may never understand what prom is, may always medically hurt and worse may never have a concept of failure let alone experience it for herself. The death of a dream is profound and should be mourned. That right was also taken from us. Almost every doctor told us she would die at birth and to be thankful because if she was to live "her quality of life would be so altered, so grim, that death would be a blessing". We were urged to end our pregnancy. We searched for months and surround ourselves with a helpful but knowledgable specialist, a compassionate OB to manage care in Wichita, a very skilled OB to deliver her in KC (who managed to give me a regular c section!), a compassionate neonatologist, and a very skilled, very sharp, top ranked neosurgeon. We never asked why we were selected to have this special child, just how we could prepare and be the BEST parents for this child. We have never looked back. 

I attached pictures of us holding her. I wish everyone that visits this page could feel the joy she brings to our lives. The thought of not having her in our family brings tears to my eyes. She is perfect. I personally still have fears. There will be failure and hard times. There may be a day when she realizes she is different, when she is treated cruelly for being different, or perhaps will be mad because she is different, but I know we will love, shelter (when possible), care for and support her every step of the way. Everyone who has visited this page, shared this site, or donated has helped us do just that, and words could never express the sincerely of gratitude that we feel for that help. From the bottom of our hearts, we thank you. 
-The Montgomerys