Thursday, October 10, 2013

How am I today...

A few days ago I posted my story of finding out that my daughter has Down Syndrome. One of my dear friends suggested that I talk about how I'm feeling now as opposed to then. And I thought that was a great idea! I would love to share and probably should!!!


At this very moment I am not struggling with her diagnosis or anything about it. But then it is a day where my thoughts are very much on other pressing matters of my life. But nowadays I am thinking about her diagnosis less and less. I remember when she was around eighteen months old was the first time that I had a day when I literally did not see the Down Syndrome in my child. I just saw my sweet baby. That was a monumental day for me. A day of great love and acceptance. You may think, geez that took her forever... but it was my battle and I finally won it.

But don't get me wrong. I still struggle with it at times. My mother and my husband can attest to that. Some nights it will just hit me, all of the struggles that she will have to overcome, the ridicule that she will face from some people, the countless times she will get sick. And on those nights I never struggle with my love for her, on the contrary it is because of my love for her that I worry and care so much about her future.

Klo gets sick a lot. I mean, A LOT!!! And that is so hard for me. It is exhausting. It is sad. And it is overwhelming. Last year she contracted whooping cough three times! That is scary and you don't sleep much when your baby is dealing with something like that. (yes, she has all of her vaccinations) And if it's not whooping cough it's something else. And sometimes the doctors won't listen to me!!!

Then there are her physical barriers. I know that she will walk and talk and what not. But let's face it, my two year old is still a baby. She crawls. She still gets a bottle. She can't feed herself very well. She doesn't talk. She has started to learn a few signs. And just a few weeks ago she learned how to pull to stand at furniture. But if you hold her hands to try to get her to stand, she won't do it.

As her mother I have tried to say that if she has Down syndrome it is only just so mild. Deep down I think there is still that feeling (well, up until recently) that I needed her to be "normal". But Klo's case isn't mild. I don't know how severe it is, but it isn't mild. She's behind. Maybe not technically in the Down syndrome charts, but in my heart.

I've learned to stay patient and accept what comes for what is supposed to be. But I still cry. I still struggle. I still worry about her future. She starts pre-school in just a year and that scares me. Children are wary of what they do not understand. I don't believe that all of them will be that way, but let's be honest, she WILL have to deal with that sort of thing. And I find myself dreading that. I find that I just want to lock her up in my snuggly arms and push that eventual day away from us.

I have lots of feelings. However, most days I am happy. She makes me so happy. Her smile is happy. Her snuggles are comforting. Her spirit fills our home with sweet warmth and love. She is my Klo Bow. My special spirit.

Camping with family... hence the dirty nails haha

3 comments:

K Cramm said...

First of all, I would like to say that the shirt Jordan is wearing made me laugh because I did a double take as to who was wearing it. lol! I was thinking, that isn't Stephanie!! lol Secondly, When I look at little miss Kloey, I don't see down syndrome, I see an adorable little girl, whom (? right?) I miss SO much!
I don't know what you are going through but I would like to hope that if I were to have a child who isn't "normal", that I would handle it like you. I believe you have/are handling this so well. I know I am not around you 24/7 and since to the crappy 5 hour time difference, I don't get to talk to you very often, and that you probably have your breaking point moments. Though I am not a mother, I know those who are have those moments about their children. By embracing Kloey and her extra awesomeness, you empower her and those around you. Trying to hide it would make matters worse. I love that you do these blogs during DS Awareness Month. Those who are not informed or ignorant of DS should become knowledgeable about the topic. I think my big eye opening to those who are mentally/physically different was working at Camp Callahan. That was one of the best experiences of my life and has stuck with me since. My thoughts, views, and attitude towards those who are not "normal" are more positive. I help instead of point and laugh (though I don't believe I laughed at them to begin with, my momma taught me better than that!!). I miss you all SO much and you know I would do ANYTHING for you. There is more I would like to say, but this comment would turn into a novel! :) LOVE YOU!!!!!!!!!!!!

Unknown said...

Just want to say every time I read your blog I get a little teary eyed if not completely teary eyed! :) Thanks for taking the time to blog I always love reading it! Your a great example of a loving mother! :)

Angie said...

I feel special that I helped inspire this post! :) *grin from ear to ear*. I enjoy your honesty, it's always refreshing and good to hear. We all need to be honest and open and being able to express what is really going on. Remember that I know your a great mommy and you do wonderful things with your girls! Truly. You know I'd tell you if you sucked... :) Love you!