Posts Tagged ‘life’

14/20 December Blog Challenge: Three Of My Proudest Moments (So Far).

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I’ve been sitting here and thinking about what are three of the proudest moments in my life are. It’s funny how as time goes by, these change. Things become more important, or less important or even forgotten altogether.

My number one proudest moment was mid November 2011. I believe it was the 15th or the 16th… It was the day that I introduced my daughter to my grandpa. I still remember how proud I felt presenting him with my little bundle of joy. Here is a photo of the occasion. This is my grandpa, my mom and of course my daughter.

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Another of my proudest moments is hard to pinpoint. My fiance is in the forces. Due to privacy and media being used to obtain information, I won’t be specific on his rank, position or which branch of the military he belongs to. I can tell you that I am very proud that he has such an important career. Being a “military wife” isn’t always easy or fun… But the future that he is working so hard to provide to our daughter and myself is so amazing… and I mean that in both the sense of providing for his family as well as protecting our country and home.

And finally a third proud moment of mine is probably the time when a few months ago, My daughter and I were sitting at the table eating lunch after she got home from school. Her communication and speech is very delayed, but constantly improving. I never noticed how much until I asked her a question, not expecting much of an answer. She surprised me! I asked her “What did you do at school today?” Usually she would ignore me or just say something random and probably unrelated. This time however she basically went through a timeline of her day telling me that she rode a bike, sang row row row your boat and had a snack of *whatever I sent that day*. I just couldn’t believe my ears! So proud! My girl works so hard everyday and it really shows!

What are your proudest moments?

Mira

13/20 December Blog Challenge: My Fears.

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My fears…

I have many fears. Throughout my life I have been afraid of many things, this or that, it doesn’t really matter anymore.  I have learned that when you become a mother/parent, that those fears you had all start to seem pretty trivial.  Now my fears all seem to revolve around my daughter.

If you are a follower of my blog, you probably already know about my daughter and her genetic disorder. For those of you that are new, My daughter has a rare genetic condition called Prader Willi Syndrome. One of the most dangerous symptoms of her condition centers around eating. Her body doesn’t metabolize food like her typical peers, in fact her body can only handle about 60% of the calories that her peers can. With the slow metabolism there is ( and thankfully this hasn’t kicked in yet for our daughter) also an insatiable hunger that is a main trademark of PWS.  Imagine never feeling full, no matter how much you eat.

The hunger of PWS is the root of many of my fears. I fear that my daughter will never feel full after eating. I fear that this hunger will control her life and she will not be happy. I fear that a remedy will never be found to help her. I fear that the hunger will drive her to be someone that she is not. And I fear, more than anything, that someday… for just one moment my attention won’t be on her, and she will gain unsupervised access to food and in that time she will eat herself to death.

These are horrible things to be afraid of. These are things that no one should have to fear. Food, it is such a complicated topic with PWS…. We need food to live… it’s what sustains us.. gives us life… but for my daughter is the one thing that is also so very dangerous.

I also fear that people will not understand my daughter and the seriousness of her condition. This is why I started my other blog ( Fight the HUNGER) which also has a facebook page. It is my mission to spread awareness for PWS, help fund-raise for research that will hopefully help with the symptoms of PWS and to do anything I can to help my daughter live the best possible life she can while managing her syndrome.

76_French-Emelyn-00052I fear that I will never be able to give her the amazing life she deserves… But I will never stop trying.

whoa these blog posts just got real…

Mira