20/20 December Blog Challenge: Why Do I Blog?

Why do I blog?

I started this blog a few years ago… The reason I started it was to post my activity during Prader Willi Syndrome Awareness month and the challenge that I accepted during that time.  I have since then started a separate blog for PWS Awareness and continue to blog on this site, using it more as my personal diary. I write about my challenges, my fitness, this month I am doing this writing challenge.

I use Pickles are Cucumbers as a place to express myself. A place for me to talk about the things that are important to me, or just a place to have that is my own.

I love blogging, even though I don’t always have something awesome to say.

I am so appreciative that some of you actually read my blog posts and follow me. It truly means a lot.

Thank you!

Mira

19/20 December Blog Challenge: What Do I Hope To Be Remembered For?

What do I hope to be remembered for?

I just hope to be remembered for something.

I have no idea what, or when or how. But I just hope that I am remembered for something. I hope that I can create some sort of change or enrich someones life in a great way. It would be amazing if someday someone was reading a history book and my name was in it… But I would be satisfied if I just came up someday in casual conversation between people remembering something about me that was great.

I just hope that when I am gone, that I am not forgotten.

Mira

18/20 December Blog Challenge: A Random Letter To Someone.

( Disclaimer: I had a hard time with this post because I drew a complete blank on what to write about… so I just threw some random stuff together after a long day in the car with a sick kid…I apologize for the slack-ass post. Zzz!)

Dear Someone,

Everyone has times in their life when it just seems like you have faded into the background and are completely unnoticed. You can feel like the world is just rushing past you and you are watching from the sidelines or shadows. I don’t believe anyone is ever truly unseen. There is always someone that see’s you… even envying those traits that make you special. You are unique and there is no one else just like you. You might not always see it, but its true. You are special and there is no one you should ever want to be. You are important.

Mira

 

 

17/20 December Blog Challenge: My Dream Job.

If I could be anything… What would I be?

I have spent so much time thinking about this topic. The big question in life… What do you want to be when you grow up? I keep asking myself this… But the fact is, I am grown up and I still might not have any more of an idea of what I would like to do with my life than I did 12 years ago when I graduated high school.

I wonder sometimes if I am wasting my life… I wonder sometimes how others figured out their dreams. I wonder sometimes why I cannot figure out what it is that I want.

There are so many things that seem so appealing. There are so many things out there that I feel I would never be able to do.

When I was a kid, I wanted nothing more than to be an Astronaut. To travel into space and fulfill my fantasies of being in some other time and place. I watched a lot of Star Trek and other sci-fi growing up. Actually I still do 😉 But, the requirements for such a career are much too involved for me.

In my adult life I have dreamed of having a bakery. I LOVE baking. I could do it all day everyday. I don’t know if I have the skills… but I would have a great time practicing till I was amazing. This dream I feel is my guilty dream. I feel like it might be inappropriate for me to follow through on this dream because of my daughter.  Some of you probably know, but for those of you that dont know… My daughter has a rare condition called Prader Willi Syndrome. This is a genetic disorder that effects her metabolism and her ability to feel full from eating. My daughter will always be on a heavily calorie restricted diet, she will never be able to really indulge in sweets and treats… her diet must, for her health and safety be nutritious and healthy. How could I, in good conscience, have a bakery that sells essentially all the things I wouldn’t want my child to consume. I feel that would make me a hypocrite.

So where does that leave me? Still wondering what my role is in the world … where do I fit in?

At the moment, I am happy being a stay at home mom… it is indeed a full-time job!

Perhaps in the future I can revisit the bakery idea, or I have even recently started thinking about the fitness avenue of careers.

My dream job would have to be something that allows me to still be a good mom. I wouldn’t want a career that took me too much away from my family life… With my daughters needs, It’s very important in our family for her to be our main concern. Who knows what the future will bring… I guess I just have to wait and see and keep on dreaming.

What is your dream job? Are you doing it?

Mira

16/20 December Blog Challenge: What can I not live without?

I think this post gets to be selfish because of course I cannot live without my fiance and my daughter… But when I read this topic I thought of the little things in life that really just make life better.

My phone and laptop : They are my sanity sometimes, in a life full of chasing a toddler around, sometimes I feel like its my only escape… a few moments here or there to just be alone doing my own thing. A link to adult conversations through social media and endless information right at my fingertips.

Chap-stick: I have a serious addiction. I cannot be without it. even if I dont really need to use it, if I think about it and I don’t have one handy… its like my lips just start to feel chapped and I cannot stop thinking about it.

Showers: I don’t know why… but I cannot fathom not showering every single morning, and I cant imagine showering the night before. Perhaps its all in my head, but I never have a good day, when, for some reason I cant get even a quick shower in. I need to wash my hair and scrub my face to feel refreshed and good to go. These are a daily must have for me…. this might be why I cannot stand camping…

Im trying to think of more things that I just absolutely cannot live without… but I am drawing a blank. Maybe I am less needy than I used to be? LOL.

What can you not live without??

Mira

 

15/20 December Blog Challenge: A Difficult Time In My Life

I think that the hardest time in my life was when my daughter was born. It was such a confusing time. I didn’t know what was happening, why it my daughter wasn’t feeding or thriving, and my fiance though he was there for her birth he had to leave after about 36 hours as he was away for work (military).

Its hard to remember the details of that time. Sometimes I feel like it is all a blur. To give you some insight into the first bit of our daughters life, let me share with you some of what I remember:

Our night in the hospital just after she was born, was not great. She wasn’t feeding and was very floppy, and the nurses were becoming concerned.  They took her to the nurses station to keep an eye on her for the night, and let us ( mom & dad ) get some much needed rest.

The morning was the start of the scary part of that first 24 hours, and the beginning of our journey. We were woken up by the nursing staff, and brought out to the nursing station to see our daughter. I was so confused. I didn’t understand what was happening, why it was happening, and I was terrified. I cannot get the image of this photo out of my head even to this day. When I think about my daughters birth… this is what I see.

The nurses told us that our daughter hadn’t improved during the night and that they wanted to transfer her to a higher level hospital that had the expertise to handle complications.

I was so confused, I was so scared. This wasn’t what I imagined it would be like… It was as if the fears you push aside thinking they are ridiculous were all coming to life.

We were moved to another hospital. I remember the long ride in the ambulance. I was sitting up front while my daughter was strapped in the back. It was the longest ride of my life.

I spent 8-10 hours a day at the hospital with my daughter everyday(for 26 days). I remember a lot of the time we spent waiting for doctors or specialists to visit, or test results to come back. It was so hard. I am so impatient and I just wanted to know what was happening. No one had answers.

I remember when the geneticist first came to see my daughter.  She simply looked at her and made some speculations, ordered blood tests and was gone.

Genetics… I don’t think this really registered to me. I just thought my baby was sick, I didn’t really consider that something might be wrong in her genetics. Well, Google is usually a very helpful tool… unless your child is in the hospital.

I took the time to take note of the characteristics that were present with my daughter, the symptoms that the doctors keep mentioning when they examine her.  I entered them online, and I Googled.

A list. That’s what my Googling gave me, it gave me a list of about 20 disorders that had the same basic traits of low muscle tone and poor feeding which were present with my daughter.  I remember reading through the list of syndromes and ailments. Some were worse than others, some actually didn’t seem that bad at all.

This takes us then to the day I received her diagnosis.  I can still remember sitting in our cubicle cuddling my daughter  and the Doctor pulling up a chair in front of me.

“We got the genetics report back, and we have a diagnosis.”

Remember that list I just mentioned? And how I said some disorders on the list were better than others. What I didn’t mention is that there was one syndrome on the list, that with with all my heart, wished it wouldn’t be.

Then the words “Prader Willi Syndrome” escaped from her lips. The words that I was wishing it wouldn’t be. My heart felt like it had just shattered.  Anything she said after that is a complete mystery to me.

I had read about Prader Willi Syndrome. I knew what this meant. That my daughter would be hungry for life. That she wouldn’t feel full after eating. I didn’t know what to do.  I was so afraid, heck, I was already afraid of being a mom, about not knowing how to be a good one… how was I going to be a mom to a special needs child. One with such a rare complex disorder.

I remember meeting with the genetic counselor. I remember her explaining the genetics of it all… stuff I had already Googled, and even though I didn’t understand much of it, I remember only having one question when she asked.

Will she be smart?

This was the hardest time in my life. I don’t know when the hard part stopped… or if it is still happening. Those first few months seemed so dark and depressing. And while I am still in some ways coping with the realization of the diagnosis…. If I could see how bright and amazing our daughter is now… I would have saved myself from so much sadness.

She is smart, cheeky, clever, so so so funny, gentle, DETERMINED, kind and just absolutely beautiful. We are so lucky that she is still in the first stages of her diagnosis and ISN’T hungry yet. I truly believe that she is amazing and that she is going to keep proving to the world that her diagnosis is not going to hold her back in life.

Mira

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

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.

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.

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.

I 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

12/20 December Blog Challenge: The Meaning Behind My Blog Name.

Pickles are Cucumbers was named because when asked what I should name my blog my fiance said: ” Hey, what about pickles are cucumbers?” and I said ” OK!”

Now, that’s how my blog was named.. but perhaps I should tell you about why my fiance said such a random phrase as pickles are cucumbers.  It all started a few years back when he told me the tale about when he finally realized that pickles were actually cucumbers… He was out with some friends eating and his pickle tasted a bit off… he exclaimed “weird.. this pickles tastes like a cucumber.”  How long ago was this? well… lets just say he was way past the age where he should have realized where little pickles come from… but never the less, he had no clue and was like ” wait, what? pickles are cucumbers?!” I like to tease him about not knowing this little tidbit of information, but then again, I completely understand that if you never thought about it, or have never had to think about it, how would your brain come to the conclusion that two things are actually related.

I am pretty grateful that he has such a funny story, and thus sparking my blogs name… who knows what crazy name I would have otherwise?!

 

Mira

11/20 December Blog Challenge: What Do I Collect?

Actively, not too much these days. I’ve actually been on a pretty good campaign to downsize… with the exception of water bottles collecting beside my bed… or the collection of chip crumbs under my desk… But I can tell you about the things I have collected in the past.

Notebooks: I have a serious addiction to new and cute notebooks. I have so many my fiance has said I cannot buy anymore until I use the ones I have. Really tho, I only like to write on that first crisp page. SO, currently I am not collecting notebooks because I am not writing in the old ones, however I DO have quite the collection downstairs… like stacks… I can understand where he is coming from.

Fabric: I have a growing collection of fabric as well, and I have not been sewing – Kids take up so much time that by the time you have time to do something… its time for bed or you are too tired and want to go to bed. lol. But I do have a good stash of fabrics, Thanks to my mom! I have to wonder…. really is this my collection or hers? considering every time I visit her, my collection grows and hers dwindles. Ha, I lie, my mom has so much I don’t even put a dent in it!

Maybe I don’t really collect anything anymore? I am collecting the Disney princess precious moment birthday train for my daughter. Each birthday that she has, I get her a new figurine. I’m certain that I like it more than she does. But, I do think she will appreciate it when she is older and possibly even look forward to getting the new ornament. And at my mom’s house.. she does have a box full of Star Trek Action Figures that I collected as a kid… and totally played with every single day. Yah, I was am a nerd… and proud!

What do you collect?

Mira