Monday, January 31, 2011

Day 21 - The Meaning of Life (as I understand it)

Right now I'm pretty sure the meaning of my life is to raise Sara the best that I can!

I truly believe that God sent her to me for many reasons.  The first being that I was in need of a serious lesson about patience and being flexible, which I seem to have finally figured out.  I also think that I am Sara's mother because God knew I was up for the challenge.  He knew I was strong, and that having Sara would make me that much stronger.

Before having Sara, I had no idea where my life was going or what I wanted.  But now the picture is so clear.  I know that Sara has something amazing to offer the world, and I know she will do great things!  And I know that it is my role in life to stand behind her and help her to reach whatever her purpose is.  I'm not in it for the recognition, my role is in the background.  And I'm totally fine with that!

Day 20 - The Charity That Means the Most to Me

It finally happened!  I missed a day and am posting late.  But I have a good excuse, I was celebrating my peanut's birthday!

I have several foundations that mean a lot to me.  I can't possibly have just one because so many of these have had such a huge impact on Sara and my life.

  1. The Children's Tumor Fondation (CTF) - For supporting NF research to help cure Sara and thousands of other people.
  2. The Children's Hospital (TCH) - For providing my daughter the most amazing care, and being that extended family we needed when she was sick.
  3. The Children's Miracle Network - For helping to support TCH, and other facilities like it around the country.
  4. Kids Wish Network - For granting my daughter's wish to travel to Disney to see Mickey Mouse.
  5. Kids Mobility Network - For providing my daughter with a special bike that she can ride.
I have others too, but these are the ones that have had the most impact.

Saturday, January 29, 2011

Sara's New Bike

Our crazy week continues here, and today we had one more big event!  Sara received a special tricycle that she can pedal with her hands.  It was graciously donated to Sara by a foundation called Kids Mobility Network.

Both myself and the people at the foundation were so happy to see Sara riding it around the parking lot.  It made everyone's day.  She was totally loving it!!  See for yourself! (Not sure what's up with the lines in the video.  Sorry.)

video

I feel so blessed that there is someone out there who is willing to provide this opportunity for Sara since I can't do it all alone!  I know that Sara will spend lots of time out on it this summer riding with the other kids!

Day 19 - What Did I Watch on TV last night?

This is simple, which is good since I'm crazy busy this weekend.

Last night Sara spent the night with my mom.  Sara's been asking to stay the night with Lu and have a sleep over for quite some time now.  So since I was child free, I spent the evening with my boyfriend.

We spent more time talking than watching TV, but it was on in the background.  I believe it was the Discovery channel; something about mining gold in Alaska.  The name of the show escapes me at this moment.  And other than that one show, I couldn't tell you what else we watched.

Friday, January 28, 2011

Day 18 - The Best Thing About Being a Mom

The best thing about being a mom is hearing my daughter laugh!  Seeing the light in her eyes, and that amazing smile melts me into a puddle every time!  I love watching her learn new things, and seeing that light go on when she finally understands it. 

There is nothing better in the world than hearing your child tell you that they love you!  Nothing else even comes close!

Sara's Testing Results

First off, I'm sorry I didn't get this posted yesterday.  No excuses, I just didn't do it.

With that said, I am happy to report that all of the testing went well.  Sara went down easily, and woke up just fine.  She did her typical wake up, which is she turns to whoever she sees first (me or the nurse) and says, "Is it over?"  I always smile and say, "Yes, and you did great!"  They had to poke her twice for the IV...they missed the first time.  And we were able to draw all the blood needed for the research study in Utah, so I mailed that out as well.

Sara's PET scan showed that she has no malignancy in any area!  That's great news!  We expected as much, but its always a good thing to check.  We won't be doing this test again for another 3 or 4 years.

Sara's EMG showed that the nerves in her right leg (the compromised leg) are much more intact then we thought.  Her nerves are able to control the majority of her muscle groups, and are very responsive.  This is great news as well!!  This test also told us that Sara's "pain" is actually a very nasty tingling sensation.  Imagine how it feels when you hit your "funny bone."  Its all tingly, and if you bump it again while its tingly you get shooting pains.  That's how Sara's leg is all the time.  Its always tingly, and that's why when we bump it she says it hurts so much.  The medicine she's on is the right one, and its working great.

And I saved the best news for last!  Sara's pelvic tumor has shown a 0% increase since her last MRI!!!!!!! 

ITS NOT GROWING!!!!  

I've waited 3 years to hear the doctor tell me this.  Up until now it has grown faster than her body, or at the same rate as her body.  So this piece of news is HUGE!  And because it is no longer growing, she won't have to have another MRI for a year.  Maybe my baby will finally go a whole year of her life without being sedated.  That'd be a first...and awesome!

As you can imagine, I couldn't be happier!  Its truly a miracle!  Thank you for all the support and prayers that many of you have provided over the last 4 years!  I couldn't do this without you!

Thursday, January 27, 2011

Testing Day

Today Sara is having all her testing at the hospital.  It will be about 4 hrs of sedation for 3 seperate tests.

First up is the PET scan.  This is to tell us if any of her tumors have turned malignant.  We won't have the results for about a week, and we don't expect that to be the case.  We do this test every 2 years or so.

Second is the MRI.  This is the routine one we do of her pelvis every 6 months to see if the tumor is growing.  I will have the results of this test today before heading home.  When the testing is over, we'll head upstairs to see the doctor and get the answer to that question.

Lastly is the EMG.  This test will show what the extent of the damage to the nerves in Sara's legs are.  We'll know what she can feel, and how much.  This is invaluable information that can really help us later to make decisions about her care.

I will be posting later, when we get home, about any results I may have.  So until then...

Day 17 - The Hardest Part About Being a Mom

It would be ironic that this topic would appear today!  I can honestly say that one of the hardest things is what I'm doing right now...sitting in Children's Hospital waiting for news about how Sara's doing.

There are lots of things that are hard about being a mom when you have a healthy child, but with Sara the hardest parts for me revolve around her NF. 

  • I find it very hard to know I can't cure her.  
  • I struggle to not come to tears every time we have a round of testing like today.  
  • I hate holding her while they stick her with needles, or make her do other things that hurt or upset her.
  • Its hard to watch her try and keep up with kids who can run and jump.
  • I also find it very difficult to look at her when she is upset because she can't do something because of her NF complications.
I wish I got to say that the hardest part is not giving her anything she wanted or disciplining her when its been a long day.  But those weren't the cards Sara and I were dealt.  And we'll deal with it like we deal with anything else, one day/hour/minute/second at a time.

Wednesday, January 26, 2011

Day 16 - My Favorite Season

Spring!  I love spring! 

I also love summer, but spring is my favorite.  I love watching the trees grow new leaves, flowers sprout from the ground, and the world transforming.  Its just an amazing thing when you stop and think about it.  I love that the weather gets warmer, and that it rains once in a while.  I love rain!

And it will be here soon!

Tuesday, January 25, 2011

Day 15 - Million Dollar Spending

Today's topic is what would I do with a million dollars.  In this day and age a million dollars isn't as much money as it used to be, so I better spend it wisely.

First I would pay off all my debt (including my house).  I wouldn't move, but I would remodel the kitchen.   My house may be small, but its perfect for Sara and I.  I would also go back to school to get my MBA.  The rest I would invest for our future.  I would still work, cause I love my job (and Sara and I need health insurance).  But if I could, I would go to part time so that I could participate in certain school activities with Sara.

I know that's boring and rational, but that's how I am.  I know my goals, and if I had a million dollars I would be able to accomplish most of them.  So that's what I'd do...spend a million dollars achieving my goals!

Monday, January 24, 2011

Day 14 - My Favorite Color

This is the easiest one so far!  And will probably be the shortest.

My favorite color is green!  It hasn't changed since I was 3.  When I was 3, I told my grandma it was my favorite color because it is the color of grass, tress, and flowers.  Its the color that makes things pretty.

I love green!

Sunday, January 23, 2011

Day 13 - My Least Favorite Trait About Myself

Let's see....really I don't have one.  Everyone knows I'm perfect!!  Okay...not really, but it sounds good.

There are lots of things I don't like about myself.  But the thing I dislike the most is that I bite my nails.  I've tried everything to quit, and it hasn't worked.  I wear acrylic nails now so that I can't chew them, and some how I always still manage to chew my real nail out from under the acrylic part.  I just can't seem to quit.  I just don't get it.

Saturday, January 22, 2011

Day 12 - My Favorite Trait About Myself

I can honestly say that my favorite thing about me is my confidence and my emotional strength.

I haven't always been as strong as I am now.  Its been gained over time.  I learned most of it by just being Sara's mom.  I had to be strong for her, and at first it was hard and I wasn't sure I could do it.  But I just started doing it, and now it seems easy.  Its much easier to stand up to people when I need to (especially for Sara).  I know now that I can take on anything and accomplish any task I set my mind to. 

I wasn't always confident in my own skin either, but that's also something I've learned through trial and error.  Its easy to love your body when you have someone in your life who tells you you're beautiful everyday.  But that isn't the only reason.  I know that I'm beautiful, and I realized a while back that it doesn't matter if others don't.  How I see myself is what matters most.  What others think is a mute point!

Friday, January 21, 2011

Day 11 - Something I've Lost That I Miss

Of all the things I've lost along the way, I miss my mind the most!  Well, that is the case most days.

I miss a lot of things I no longer have in my life.  And of all those things, I miss my grandmother the most.

I wasn't close to a lot of my grandparents.  My mom's parents lived in Ohio, so I saw them once a year in the summer...and sometimes Poppy would visit for Xmas.  I don't remember Grammy ever coming to CO, just us going to see her.

My dad's dad died when I was two.  I have one very cloudy, dream like memory of him.  But other then that, I have no memories at all.  I'm not sure I really miss him since I never really knew him.  I know I love him, but I just have no connection to him.

And that leaves me with my Grandma!  I miss her more than anything else. When my parents divorced, we spent a lot of time at her house having dinners with her and Dad.  She helped my dad by watching us, and we loved to bake together.  Toward the end of her life I didn't see her much, and I wasn't able to be there at the end.  That's a big regret I have in my life.  I was too busy being young and living my life to slow down and take time to see her.  I'm not sure I will ever forgive myself for that.

I hope she knows how much I miss her!  Sometimes I feel like she might be with me.  I talk to her often, hoping she can hear me.  I hope she's proud of me and how I'm living my life now, and I hope that she can see Sara and how amazing she is.  And I hope that someday (far from now), I will get the chance to see her again.

Thursday, January 20, 2011

Day 10 - My Hopes For The New Year

My biggest hope for the new year is that Sara will continue to do well and be healthy!

I would also like to pay a good portion of my debt down.  I know I can't pay it all off this year, but I would like to make a really good dent so maybe that can be my goal for next year!

I would also like to get back to school in the fall.  Honestly, I'm not sure this is possible...but I'm going to keep working on it no matter how long it takes.

And like several years before it, I again want to put on my goal list that I will work on (and maybe even finish) the novel that I started several years back.  I would like to get it finished, and someday published.

My life is really good right now, so my list is short.  Plus, if its short, than I'm more likely to get more of it completed.

Wednesday, January 19, 2011

Eye Exam Results

Sara had her annual eye exam yesterday (and so did I).  Sara has to have one because of her NF, and I do just cause I'm old and blind.

Sara did great!  When the tech said she was going to get the eye chart with the pictures instead of letters, Sara said she wanted to read the letters instead "just like mommy."  And she did wonderful, reading all the letters she was asked to.  And of course, she has perfect vision!  We did have to hold her down to get the drops in her eyes for the dilation, but then when she got to sit in front of the machine to take pictures of her eyes she was pretty excited.  She really liked that she got to see what the inside of her eyes looked like.  And I'm happy to report, there is no indications that the NF is causing any issues with her eyes.  They're in perfect health!

Now my eyes are another story.  My vision is awful, as it has been for years, but isn't any worse than last year.  Yea!  But my left retina is still showing a slight deformation.  It isn't impacting my vision, and we've been watching it for about 2 years now.  It wasn't any worse this time than last year, so that's good.  It could cause serious problems with my vision if it decides to get worse, so let us hope that doesn't happen.  For now, we just watch it and make me take an extra test each year to make sure that I'm not losing my peripheral vision.

So there you have it!  One more appointment off the list until next year!

Day 9 - A Book That's Impacted My Life

I'm sure that whoever wrote this topic didn't mean self help books.  And typically, self help books are not my thing...and I don't particularly find them all that helpful.  But...

The book that has had the biggest impact in my daily life is called Fighting For Your Marriage, by Howard J. Markman, Scott M. Stanley, and Susan L. Blumberg.  I know, I know, I'm not married.  And although this book is geared toward those having issues in their marriage, the information in this book can be used anywhere.  Basically it teaches you how to communicate your thoughts better, and understand others better.  It teaches it within a relationship, but you can use it anywhere.

I read it about 10 years ago, and once in a while I pick it up for a review.  But I use it everywhere...at work, home, with friends, family, everyone I meet!  And since I've been using the concepts in this book, its been much easier to communicate with people and understand what their saying.  I have a lot less miscommunication in my life now then I had before, and that means less conflict with those around me.

I know this is probably not what this question was suppose to be, but this is my honest answer.  Its not asking the book I like the most (I could never pick just one), or have read the most times (The Whims of Creation, by Simon Hawke), or my favorite series (Exiles Series, by Melanie Rawn).  It just wants to know which one has an impact on my life, and as boring as it might be, this is it!

Tuesday, January 18, 2011

The Most Amazing Package

As many of you know, Sara and I will be heading to Disney World in just 2 short weeks thanks to Kids Wish Network granting Sara's wish to see Mickey Mouse.

When we started the application process, some of the things they asked were about Sara's favorite things (colors, characters, tv shows, movies, etc.).  I asked why that was important and our wish coordinator told me it was because they liked to send the wish child a package with a couple toys in it right before the trip.

Well, that package arrived today...and it is incredible!!  Apparently their idea of a a couple of toys, and my idea of a couple of toys are way off.  See for yourself!

I took this pic with my phone, so it isn't great.  But it will give you a good idea of how amazing this organization is.  I didn't measure it, but the box is about 36" x 24" x 12" and packed to the top with no room to spare!

And here is what Sara thought of it when she got to opening some of the toys in the box.






I can't say enough about how incredible Kids Wish Network is!  Everyone I've talked to there is amazing.  They really are invested in helping the kids that are nominated for wishes.  It brought me to tears to see how happy Sara was with what they sent her. 

I never realized this would be such an emotional journey!  Imagine how much I'll cry when we actually go on the trip if I'm already crying just from watching Sara open and enjoy what they sent in this package. 

I can't say it enough.... 
THANK YOU KIDS WISH NETWORK!


Day 8 - My Biggest Challenge (right now!)

There are lots of challenges in life, most of which come with parenting a child with special needs. But really the part of life that I find the hardest is setting boundaries with my family.

As I've gotten older, I've learned that I need to set boundaries for lots of reasons.  Everyone has them, at work, at home, with friends or family.  And I'm a lot better about setting them now than I used to be...but I still struggle to set them with certain members of my family.

It seems that a lot of times I think that I put them into place, and then they don't stick.  This could be because I don't communicate them clearly, or maybe I just don't enforce them as much as I need to.  I know I need to figure this out because when they aren't there I feel like my life is being invaded, or I'm forced into situations that make me really uncomfortable.  Its very stressful, and we all know what I don't need in my life is more stress.

I don't know why its so hard, but it seems to be the one thing that is always showing back up in my life.  Maybe some day I'll figure out how to make them stick better, but for now I'm just going to keep working on it.

Monday, January 17, 2011

Day 7 - My Happiest Memory

I like this topic much better than yesterday's.  So here we go!

This one shouldn't be too hard for any of you to guess, but by far all of my happiest memories involve Sara.  And there are a lot of them.  Her birth, the first time she rolled over, sat up, crawled, and so on.  But my favorite is the first memory I have of her in my arms!

She was so small, and so cute!  I remember just having her in my arms, we were all alone in the hospital room, and just looking at her.  I was amazed by the fact that she was finally here after such a horrible pregnancy, not to mention almost losing my life in the process.  I touched her small fingers, and rubbed the back of her tiny hand.  She was asleep, and looked to innocent and peaceful.  I remember telling myself in that moment to commit every detail to memory because all too soon she would be a big girl.  And its been almost 4 years since that moment, and I was right.  Its arrived way too soon!!

It was the most amazing moment of my life (and the scariest too)!

Sunday, January 16, 2011

Day 6 - My Saddest Memory

I have several sad moments in my life that spring to mind, including the loss of loved ones.  And another one of the saddest moment of my life was when I suffered my miscarriage before getting pregnant with Sara.  That one still gets to me every year when that time of year rolls around.  I'm not sure that wound will ever completely heal.

But the saddest moment overall has to be Sara's diagnosis.  After 10 months of searching, it was a huge relief to have an answer...and with that a treatment plan.  But with this news I had to go through a new grieving process (not to mention a huge learning curve as well).  I realized that my daughter would never get to do lots of things she would if she were healthy, and that she would face battles as a small child that most adults may not be able to handle.  I can't help her, fix her, or really do anything but stand by and watch. It still makes me so sad to know that I am helpless to take this burden from her, or even make it lighter for her to carry.

Now that I've had 3 years to deal with this devastating news, I've come to a good place with it.  It isn't easy to accept I can't change it, but sometimes I don't have to.  I can advocate for my daughter, and by doing so bring awareness to others.  That helps to raise funds to do research, and maybe some day a cure will be found.

There are still days that I look back and replay that memory and it brings me to tears.  And by far, this is the saddest memory in my life that has had the biggest impact.  But I wouldn't change it for anything.  Its made me stronger, more resilient, and more compassionate toward others.  This moment in my life has made myself and Sara who we are today!  And no matter what anyone else thinks, I think we're both pretty cool girls!

Saturday, January 15, 2011

Day 5 - My Friends

Here I am, blogging really late because its the weekend and I just thought of it! 

With that said, I've always been one to have a couple close friends instead of a lot of friends that I don't talk to all that often.  And what that means is that these friends aren't really friends at all, but just more of my family.  They are the family I've chosen instead of being born with!

First is Kimmy!  She hates when I call her that, but I just can't help it.  She's just like a little sister to me.  We haven't been able to see each other much recently since she's been going to school in New York, but when she comes home to visit we try to get together a lot.  Sara has no clue she isn't really her aunt, and I know that Sara misses her just as much as I do.  We can't wait for her to come home (and stay)!

And then there's Mary!  Mary and I have been friends for the entire lives of our children and most of our pregnancies.  We meet in an online support group for women who were pregnant and had lost a previous pregnancy.  We became very good friends quickly, talking every day.  And have stayed in touch even after leaving the support group.  Finally, this last summer, Sara and I got to travel to MN to finally meet Mary and her son, Jack!  Of course it was like we'd known each other forever, and we talk even more now...if that's even possible.

I have a couple other friends that I keep in touch with, and get the chance to see once in a while.  And I know that just because I didn't mention them all by name, that doesn't make them any less important.  You all know who you are, and I love each and every one of you!!

Life wouldn't be complete without my friends!  They've been with me (and Sara) through thick and thin.  They've come to the hospital late at night, babysat, and planned birthday parties with me.  I'm so lucky to be blessed with such amazing friends!

Friday, January 14, 2011

Day 4 - My Family

I'll try to make this short, although that might be hard since my family is complicated.

First off is my baby girl!!  Well, she isn't really a baby any more.  Sara's going to be 4 years old at the end of this month...and I'm in total denial about it!  Its just Sara and I at home, so as for the immediate family I live with she's it.  Well, and our dog, Tank.

My parents divorced when I was in middle school, so from here it gets kind of complicated. 

First is my dad and step-mom.  Dad married Amy when I was around 13.  We all work together, so we see each other often.  Between working together 5 days a week and spending extra time together with Sara, we've become quite close the last couple years.  I can't imagine my life without them.  They have been instrumental to my success at my job and as a mom, and I know that they will continue to be supportive no matter what life throws our way!  I owe them more than they will ever know.

Then there is my mom and step-dad.  My mom married Ed when I was in high school.  Ed had 4 sons from a previous marriage, so I went from being the oldest to being the 5th child...but still the oldest girl (which is really important in this family).  I talk with 2 of my step-brothers once in a while, but have no contact with the other two at this point.  Mom and Ed also took in Ed's two young grandchildren, Brian (8) and Alexis (6).  Lu and Obo (as Sara calls them), are the children of one of the brothers we no longer speak to.  So the kids live with them full time, and Sara and Lu are very good friends and love to play together every chance they get.  We all have lots of fun together!

I have a younger sister, Barb.  In the last year or so, Barb and I have really lost touch.  I've had some trouble excepting the choices she's made in her life, and so have distanced myself to some extent.  Usually when I see my sister, its when we all get together at my mom's for a holiday or birthday.  I really hope that at some point this relationship will be able to be healed, but we've never really been close so I don't know how it will turn out.  There's a lot of growing left to do before this relationship can probably even start to heal.

That's pretty much it for my immediate family.  My grandparents have all passed, and I have a couple of aunts on my mom's side and one on my dad's.  I'm close to both aunts on my mom's side, and we talk often, but I rarely speak with my aunt on my dad's side.

So that's it!  My very small, but complicated, family. 

Thursday, January 13, 2011

Day 3 - A Recent Photo of Me

This is the most recent photo of myself I can find that doesn't have anyone else in it with me.  It was taken back in July at Rocky Mountain National Park.  It was one of the best days I've had in really long time!  We were just hiking around and found this really cool log, so decided to take a break.  While we were sitting there, a single deer ran by pretty close to us.  It was really cool! 


I picked this photo for two reasons.  It reminds me of that day, which was fantastic, and it is the only one of me I can find that was taken in the last year.  Its not a great photo of me, but it'll do!

Wednesday, January 12, 2011

Bad Day!

Today I'm having a bad day...and its of my own making.  I'm just angry and upset about a bunch of things that I have little or no control over!  And what makes me more angry than thinking about those things, is the fact that I have a bunch of amazingly good things in my life right now that I can't seem to focus on no matter how hard I try.

The thing that's bothering me the most today is the fact that I really want to go back to school...and I mean REALLY!  I always knew I would go back and get my master's (in what I have no idea), but I just can't seem to get to a point to make that happen.  I keep working hard to pay off certain things, make room in my budget, work toward having the money to go to school.  And it feels like every time I make some progress, something comes up and those funds I've saved for school end up somewhere else.  Its so frustrating! 

Of course, there are other things on my mind.  And with all these things in my way, I can't seem to find my happy focus I usually have.  My positive attitude toward life is just missing.  I can even list many great things in my life.  Like....

  1. Sara, my whole world
  2. Sara and I's continued good health
  3. An amazing man who takes wonderful care of me and makes me feel like a princess
  4. Family
  5. Friends
  6. A good job
  7. A safe place to live
  8. My dog
  9. All the opportunities life has put in front of me and Sara
  10. And many others...
And with all those even typed on the screen in front of me, I still don't feel any better.  Hopefully this melancholy feeling will be gone soon.  I want to get back to being the annoying, way too happy in spite of it all, positively crazy girl who always sees the silver lining.  Life is good, and I know it!  I just wish I could feel it right now!

Day 2 - My Blog Explained

This blog started because if I had to listen to one of my BFFs complain about how I wasn't on Facebook one more time, I was going to lose it.  (Love you Mary!)  So my blog was born.  I had no idea what to put on it other than to babble on and on about my daughter...she was the only thing going on in my life at the time.  I figured this was also a good way to keep family and friends updated about all that was going on with Sara's medical issues and our lives in general.  I only have to write it once, and they can go read it whenever they want.  Perfect!!!

And originally that's all this blog was for, but now there is a little more about me as well.  Some of my readers started implying that they wanted to hear my thoughts and ideas as well as read about Sara, so now I post about a lot of different things...mostly whatever comes to mind when I log on.  I also love that I can share videos and pictures of Sara's big moments in life! 

As for the title of this blog, it is also inspired by the very same friend.  She once told me that I need to write a book about all my me-isms (as she calls them).  She said that I had great ideas, and that maybe I should even start a religion....and that people would actually follow me, which I still think is crazy.  So the title of my blog is just that; my best efforts to explain my me-isms.  Its how I practice my life because sometimes I think the thought that I'm actually doing it is too scary.  Its about how I parent, think, and just plain live.

And there you have it....day 2!

Tuesday, January 11, 2011

Day 1 - The Big Intro!

Let's get this party started!!

No better day to start then the day everyone is talking about.  1/11/11!  So here I am trying out this challenge thing finally.  No more excuses on why I can't do it, and no more procrastinating.  Hopefully things will go smoothly and I won't miss any posts, and many of you know how very unrealistic that is with all that's on my schedule.  But I can do this, and I will do it!

Well, let's see....where to begin?  This is going to be long; I can feel it.

My name is Julie Frey.  I am 31, and have a beautiful 3 (almost 4) year old daughter.  She's the light of my life and I can't remember my life before her, and I can't imagine it without her.  Sara has NF-1, and because of that she has a lot of medical issues that are in constant flux.  Lots of appointments, testing, and surgeries have filled our past...but now she's doing great and we couldn't ask for anything more.  Its great to only have to go to the hospital for a day of testing every 6 months instead of a week long stay every month when she was sick!

As for my "professional" life, I work at the family business with my dad and step-mom.  I work in the manufacturing department as a test technician for video and audio distribution amplifiers.  For those of you who have no idea what that means, I test, build, and repair electrical products that are pieces of a larger video/security system.  Our products are used in planes, elevators, and anywhere you can imagine there might be a security system or video system.  We also build special custom products for the armed forces that help keep our troops safe and bring them home to their families.  I feel really honored to have such an amazing job that makes a huge difference in a lot of people's lives!

As some of you know, I didn't always want to work in the family business...I just kind of ended up there.  I have been to school for lots of majors, but the one that stuck was teaching.  I graduated from Regis University in May 2008.  But due to my daughter's health declining over the following 14 months, I was unable to obtain a teaching job.  Sometimes I wish that I could go back to it, but I love what I do now, even though it wasn't my original plan.  I know that I will probably never teach because of Sara's health.  I've come to terms with giving up my "dream job" for my baby.  I'd give up anything for her if I knew it was the best thing for her!

I'm a single mother, and it isn't easy.  But life is always throwing curve balls, and it is just one of those things.  I do the best that I can with what I have, and I think I do a good job.  Obviously there are good days and bad days, but I love having lots of one on one time with her.  I feel blessed to have so much time for the two of us to spend together.  We have lots of fun things we love to do together.  We go to the zoo often, paint and do other craft things, we play, watch movies, and just hang out together. 

And when I'm not doing the mom thing, I live another life.  Sara goes with her dad 2 days week, so that means I get to turn my mommy mode off (almost).  You always think about and worry about your kids, especially when they aren't with you.  So my mommy mode never goes off completely, but it gets to come really close.  And in my other life, I get to play the role of a girlfriend to the most amazing man.  He's sweet, kind, smart, talented, and handsome!  He takes exceptional care of me, and Sara too when she's here.  We've taken things really slow over the last several months, and we have the most amazing relationship.  I finally really know how it feels to be in a healthy, committed relationship.  I can't wait to see what the future holds for us.  It can only get more amazing from here!

And I guess I need to mention may hobbies really fast...so other then being a mother and girlfriend, I like to read, cook, and enjoy all the amazing wildlife and nature areas that CO has to offer.  And for those of you wondering; no, I don't ski.

So if you've actually read this far, I commend you.  But that's me in a nut shell.  Untill tomorrow!

Saturday, January 8, 2011

Another First!!!!

We have been working with the PT clinic at TCH to find some good options for Sara to ride a bike.  They have located a tricycle that she can pedal with her hands, and that is in the works to get.  But they also think it would be good for her to have just a normal pedal bike.  Although with her legs, we weren't sure if she'd be able to move it at all.  Of course, we were not to be defeated and her therapist found a way to make it possible for Sara to ride a bike.

She has these neat little attachment pieces that hook on to the pedals.  Then she can use her entire foot to pedal, plus they have straps to keep her feet attached to the pedals.  So this makes it possible because Sara can use her strong leg to do most of the work, and use her weak leg when she feels strong enough.

I almost cried while shooting this video.  Sara's first bike ride EVER!!!!  And yes, the therapist is helping, but Sara is doing about 90% of the work to move the bike.

video


Guess I know what to get her for her birthday now!!  Hopefully I can find a bike to meet all the requirements that it has to have in time!

Thursday, January 6, 2011

My Own Blog Challenge

Some of my fellow bloggers that I follow are currently doing (or about to start) a blog challenge.  I've considered doing this a couple of times, but never found one that I really loved and wanted to do.  But they have inspired me to stop using that as an excuse, and just do it!

So to fix this, I just decided to write my own.  Its taken me a while, but here is what you can expect from my blog challenge when I get it started.
  1. Intro about me (as my life is now).
  2. The explanation for this blog, and its title.
  3. A recent photo of me, and explanation of why I picked that photo.
  4. My family explored.
  5. My friends explained.
  6. My saddest memory.
  7. My happiest memory.
  8. Life's biggest challenge so far.
  9. A book that has had an impact on my life.
  10. My hopes for this new year.
  11. Something I've lost that I really miss.
  12. My favorite trait about myself.
  13. My least favorite trait about myself.
  14. My favorite color, and why.
  15. What would I do with a million dollars?
  16. My favorite season, and why.
  17. The hardest thing about being a mom.
  18. The best thing about being a mom.
  19. What I watched on TV the night before.
  20. The charity/foundation that means the most to me, and why.
  21. What I think the meaning of my life is (so far).
  22. My favorite cartoon as a child.
  23. My thoughts on religion and God.
  24. My favorite piece of art.
  25. A song that makes me cry.
  26. Something that always makes me smile.
  27. My favorite vacation.
  28. If I had 3 wishes...
  29. A picture of something that makes me happy.
  30. My goals for the future.
So there you have it!  I've taken the things I like the most from the 3 or 4 different challenges I've seen, and I've rolled them all into one to make a giant mess.  Should be a good time...at least for me to write, maybe not so much for you all to read.

Keep checking back if you're really that interested.  I will be starting my challenge sooner than later.

Wednesday, January 5, 2011

Sara's logic says...

Sara and I are watching Blue's Clues last night, and the episode is about how things grow.  You know, plant a seed, turns into bush/tree, then harvest the fruit/veggies.  Simple enough!

So as we're watching this my daughter speaks up with some of her amazing 3 year old logic that just can't be ignored or argued with.  Mrs. Pepper and Mr. Salt ask Steve where orange juice comes from, so of course he turns to the camera to ask the kids watching if they know where orange juice comes from.  And what does my darling angel say....

She says, "From the store!"

And when he explains that it comes from oranges that are grown on trees, Sara stands by her claim that it ONLY comes from the store.  That whole fruit tree thing can't possibly be right.

She then literally yells at the TV...

"My mommy gets it from the store, and there aren't any trees in the store, so you're wrong!  She uses that little card thing!"

I love 3 year old logic!  Its so simple!  Not to mention highly entertaining as well!

Saturday, January 1, 2011

To start off the new year...

I know that many of us are looking forward to what 2011 has to offer.  I know that I can't wait to see all that it has in store for me!

And to wish you all a very magical new year, I bring you the very unique musical talents of Sara.  Hope it makes you smile as much as I did! (And in case you can't tell, she's preforming Twinkle, Twinkle, Little Star.)

video


HAPPY NEW YEAR!!!


We made it home...FINALLY!

Today, after a long cold night in the middle of nowhere, we arrived at home!!!  I've never been so happy to see my house as I was today.  It's so nice to be home.

After unpacking the car, and some much needed showers and clean clothes, we headed off to my mom's to see everyone.  It was awesome to eat a home cooked meal, especially since I didn't have to cook it!  We chatted and just hung out, and I know Sara was so glad to be crawling around and playing instead of still trapped in her car seat.

And thanks to all of you who pitched in to make this trip possible!  It was well worth it, even with all the delays getting home, and I couldn't have done it without any of you.  Thank you!!