Reflection On One Year Ago Today

Alayna has such an angelic face. I love watching her sleep.

She has a very tiny little mouth and lips.
Getting sleepy before bed and she is tired of me stalking her with the camera.
What a cute little pose....but that's about all of the cooperation that I got! Not one smile?
Big brown eyes!
Alayna is still teething and her little chin and sides of her mouth are red from all of the sucking on her hands and slobbering.

Sitting in her bumbo. She lasts so much longer in it - maybe about 10 minutes and then she gets bored and tired.
Thank you to all of you who leave comments on my blog. My mom loves your kind words and encouragement. They mean a lot to her and she reads every one of them.
Alayna still wants to keep her head looking down, so we use the sounds & lights to get her to look up. She likes watching the lights blink back and forth.

Okay mom! Maybe I'll give you one little grin....now leave me alone!

One year ago today, April 18, 2007, was probably the day that had one of the largest impacts on my life (and my families lives). I was still home with Alayna on maternity leave and we were getting ready to go to Muscatine Community College to visit Grandma Billie. The phone rang as I was getting ready to walk out the door. On most days I would've just let it ring to the answering machine, but something told me to go back and answer it. I'm glad I did.

Our genetic counselor from Peoria was on the other end. She informed me that they discovered what Alayna's developmental delays and health issues were contributed to. She told me that Alayna had 1p36 Deletion Syndrome. All I can remember is frantically grabbing a pen and scratch paper on the desk to write down as much as she was telling me and as fast as I could. I was speechless for two reasons. One, because I had no clue what she was telling me and two, because I knew this meant something was really wrong. My worst nightmare was coming true. A deletion syndrome? My mind was saying what the heck is that? I remember her words back to me were "you are handling this very well. Are you okay?" I was handling it well because I was in this state of shock accompanied with fear. What was Alayna's future going to be like? Will she be okay? Even the thought of losing her flickered in my mind.

I instantly called Dana at work and he, along with his parents, rushed right home. We did internet searches and read the computer screen through blurred eyes full of tears. Blinking to get them to clear was difficult because I remember them pouring out of my eyes with no effort. What we read was not comforting at all. Very little research was out there to look at due to the newly diagnosis of 1p36 kids. However, we did find a blogsite done by a father of a 1p36 daughter. It is now a link on this blog. That was the best site ever and we felt like we had hope and reassurance that things were going to be okay. (Thank you Nate) Now, if you ask me if I believed that then I would say no. But faith, love, and watching Alayna progress has me convinced now. It just took a little time.

The very next day, April 19, 2007 we headed to Peoria to meet with our "new" genetic doctor from Chicago, Illinois. He gave us some copies of medical journals if we wanted to try and read them and basically couldn't tell us anymore than what we already knew. He was a nice doctor, but it wasn't the most comforting visit for any parent. He just wasn't the kind of doctor you ever plan to have an appointment with. And hearing that he had never had another 1p36 patient before was not what we wanted to hear. From that day forward, we promised to do whatever we could to help Alayna develop and ensure that she continued to progress forward at the pace that she chose. Unfortunately, we absorbed ourselves into researching on the internet and it wasn't the best thing for us to do. We learned quickly that it wasn't going to help our situation by being negative and not having a positive outlook. We vowed to stay off the internet unless a medical situation arose and we put the information we had already read in the back of our minds in case of future use.

It was easier said than done. I went through a grieving process of my own for quite awhile. I had a broken heart. It was losing the dream that I had envisioned in my mind and played out over and over again. If you are a parent I know you can relate to what I'm talking about. Most days I didn't want to leave the house because I seemed to handle the situation better in my own little world. I didn't have to come face to face with the public, friends, see other children Alayna's age, and explain anything. It was comfortable and peaceful at home. However, I do remember a few rainy days were just the trigger to set off the tears. I learned that tears were okay and crying isn't a sign of weakness. But time does heal all wounds and my faith and family were my rocks.

It still seems unreal at times, but we have all come along way. Sometimes it isn't easy, but I'm proud to be Alayna's mom and I'm grateful God sent her to me. She has opened my eyes to another world that I was completely oblivious to. She has taught me so much about unconditional love, compassion, patience, acceptance, and overcoming challenges. My goal is to tell her story and educate as many people as possible about special needs children. I want to create awareness for our 1p36 families across the world. In fact, next Monday I am going into the Parenting class at the high school where I teach to talk about Alayna. The students just completed a unit on genetic disorders and the teacher remembered how I offered to speak about Alayna. I accepted her invitation without any hesitation. I'm honored to talk about my daughter. One year ago today, my outlook for Alayna was clouded, unclear, uncertain, and full of fear. Today, it is a completely different story. I have nothing but hope and certainty that she is going to be just fine. I now have a new dream that plays over and over in my head. She will be the person God intended her to be and I'll love her every step of the way.

April 18, 2007 will be a day embedded in my heart and mind forever. God has blessed me and I hope he blesses you too. So here's to NEW DREAMS!