Brumbeloes: March 2012

Kamryn playing Peek-a-boo

As the Mayo Clinic trip gets closer and closer, I can feel my anxiety getting worse. My biggest fear is that the doctor will say that he doesn’t think that we should start Kamryn on Zeveska. While I trust his judgement, part of me feels like only I know what is best. I just feel like doing something - anything - is better than nothing. If it takes us continuing to fight this, we will. I know that a few months might not seem like a big deal to some people, but to me it is everything!

I am beginning to realize just how fast time is moving, and I have been having some problems with “letting go” - of little things really. I wonder if other parents do this too. For example, I just now gave into letting her take a “big girl” bath. I’m not sure why, but some things just have been upsetting me. I guess the older she becomes, the more scared I get. I worry about how much time we may have left or if symptoms will start showing soon. I hate that we never really had that “innocent” period of time without knowing something was wrong; yet, I am glad that we found out early. I am learning to live day by day, but it is definitely hard to do. There are days, like today, where I am to the point of tears and a complete mess emotionally. Yet, today could be considered one of my better days when compared to the beginning of this journey. When we first found out, I would suddenly “remember” what was going on, and I would become overwhelmed with sadness and anxiety. When I say “remember,” I don’t mean that I ever actually forgot. I just kind of tucked it away somewhere else in my mind. Often, I would wake up, go about my day, and suddenly it would hit me - like a ton of bricks. I would start thinking about how it couldn’t be real. She was so perfect. How could this happen to her? Throughout the day, I would become stronger. I would begin to feel full of hope and motivation only to go to sleep and wake up to face the same nightmares. I am so glad that I am over that “remembering” stage for the most part. I still have moments like this, but they aren’t quite the same. I guess, in a way, I carry the disease everywhere I go with me now. I never really feel shocked anymore. I can tell that my faith is becoming more firm and my strength in God stronger.

Kamryn lately...

Kamryn’s personality has really started to blossom. She is SO active and very full of life. I have never seen a baby so hyper, but my family says that she is just like I was! Which, of course, I love to hear.

Games She Loves: Peek- a- boo, Fakey Fake (This is a game that she plays with my meme and me. She will jump back and forth between the two of us, kissing/hugging, and trying to decide which one of us she wants)

Songs: Kamryn loves music. How do I know this? She loves to dance, listen to music, listen to someone sings (only her favorite songs though), and she hums a lot!! She loves “You are my Sunshine.” Sometimes she will even get mad if you stop singing it and start singing something else. She also loves “Bushel & a Peck” & “Old McDonald.” I sing her lots of little songs, but these are her favorite.

She has started crawling a little - not full out, but she has started! She has also gotten very brave as far as standing goes and most of the time, she can stand alone for a few seconds. I guess she thinks she is ready to walk! It is so obvious that she would rather walk than crawl.

She can wave and clap!! She loves to clap and say, “yay!” She is such a show off sometimes - I love it! She will show off (especially if there are a few of us around) & clap for herself/ wait for you to clap. It is so cute!!

She kisses and is learning to eskimo kiss me! She’s so sweet. My happiest moments are when she kisses my cheek and hugs my neck.