It's Been Two Years!

I can't believe it!  And my guess is most of you who know Sara can't believe it either.

It's been two years to the day since Sara was released from the hospital the last time!  Can you believe that none of us have chatted with the nurses, ate hospital food, moved IV tubing from the pole on the bed to the pole on the little red wagon, or slept on that uncomfortable couch in those rooms for two years??  The phrase "Sara's in the ER again" hasn't appeared in anyone's text message list.  I haven't had to make that phone call to our family.

As I think about today, and what it might mean, I can't help but go back to the beginnings of this blog.  Oh, how far Sara has come since I started this blog so long ago!  When I started this blog, life was scary and unpredictable.  Its still pretty scary, and fairly unpredictable, but for completely different reasons...just the usual reasons life throws at all of us.

Thanks to an amazing team of doctors that never gave up, and an amazing hospital with the best nurses anywhere, here is a short list of just some of the things Sara has accomplished because she has been healthy enough to do so in the last 2 years.

• She's attended 2 years of preschool, and is at the head of her class.
• She's made amazing friends who love her at school.
• She's been able to travel to Disneyland and Disney World thanks to the support of our family and the Kids Wish Network.  Thank you!
• She's inspired the people around her to be better.
• She's always got a smile to share and some kind words when someone's feeling down.
• She's learned so many things that I can't name them all. Things like reading, writing, math, and what NF is and how it affects her.
• She's received a bike she can pedal with her hands from Kids Mobility Network.  Thank you!
• She's celebrated 2 more birthdays!
• She's learned to swallow pills, making taking meds and traveling much easier.
• She's learned how to care for her urostomy and how it works.
• She's moved out of a baby bed and into a big girl bed.
• She talks about her future and says she wants to be a doctor when she grows up so she can help other kids like her get better.
• And now Sara is currently attending PT to learn to walk with her walker! 

I'm constantly amazed at all the things Sara is able to do, or at least willing to try to do...even if someone has said she can't.  Sara is an angel from heaven, I feel so blessed to be her mother.  So much has happened in the last two years, and she's grown so fast.  I can't wait to see what the future holds.

A Difficult Mother's Day

This weekend was hard.  It was full of stress, tears, hugs, love, laughter, and fun...but still hard!

Saturday marked exactly 5 months since my stepmothers untimely departure from this Earth.  I miss her so much!  To celebrate her, and her most amazing life, we did something we knew she would have loved.  We got together those that mattered most to her, close family and friends, and we went shooting for the day.  My stepmother was a competitive shooter and avid firearms collector, so it seemed appropriate to spend the day doing something she loved so much.

At the end of the day, we released balloons.  Each had a note tied on it to her, and it was a very tearful moment for many of us.  We never had a funeral or memorial service for her because that is not what she wanted, but the problem with that is none of us had a chance to really say goodbye to her.  This was that chance!  There were many tears from many people as we all stood and watched the balloons float up to her.  I know she's up there somewhere, watching each of us (and even helping out on occasion).  She helped us out that day by parting the clouds to let the sun through for just a little bit...and at the perfect time in the day too.

And of course that makes today hard too!  Mother's day...I would have called her today.  She wasn't my biological mother, but she still was very much a mother to me at some very important points in my life.  She never had children of her own, but I know she thought of me as her own in many ways.  I miss her!

She reminds me that life is too short!  There isn't a day that goes by that I don't think of her.  Something reminds me of her every time I turn around.  I see the pain in my dad's face, and I realize how happy she really made him...and that happiness is gone, never to return.  It breaks my heart to see because I know when she died she took a piece of my dad with her.  He isn't the same man, and he never will be.  But I will never be the same person either.  My stepmother was one of those rare flowers that made an impact on everyone she ever met.  She was incredibly kind, amazingly thoughtful, and continually supportive.  She can never be replaced!

And along with my dad, I grieve for her mother as well.  Another amazing woman that came into my life at the perfect time.  I can't imagine how she must feel on this Mother's day.  I wish that I could take her pain away, even if just for this one day.  It is the only gift I can't give that I wish I could.  It hurts me to not be able to do it for her and for my dad too.

Happy Mother's Day to all the Moms!  I hope your day is filled with love!

Preschool Graduation Pictures

A couple weeks ago was school picture day.  They took their class photos, personal school photos, and graduation photos of the kids moving on to kindergarten. 

Here is Sara's graduation picture from preschool!  Her personal school photos will probably be another week or so.

May is NF Awareness Month!

Help me to bring awareness to all those in our communities about NF!  The more people who know about this disease, the more people there are to help us find a cure.

Here is a list of things you can do to help bring awareness.  This list comes from the CTF website.

1. Change your social media profile pictures to a photo of the Children's Tumor Foundation "End NF" ribbon, and encourage your friends and family to do so as well. The ribbon logo can be downloaded from http://www.facebook.com/childrenstmrfdn.
2. Wear blue and green on May 17th which is World NF Day.
3. Wear the Children's Tumor Foundation blue and green NF awareness wristband all month.  Wristbands can be obtained by emailing Rosa Perez at rperez@ctf.org.
4. Participate in or volunteer at an NF Walk or other community event organized by the Children's Tumor Foundation. Please go to www.ctf.org and click on "Local Events" or the "NF Walk" logo to find opportunities in your area.
5. Create a fundraiser to benefit NF research. For example: Approach your Human Resources department about letting employees wear jeans to work if they make a $5.00 donation to the Children's Tumor Foundation, Host a bake sale or lemonade stand, or Ask a local restaurant or bar to donate part of their proceeds on a particular night.
6. Put the "About NF" flyer up in your community (in your workplace, at the public library, in coffee shops, on civic center bulletin boards, in grocery stores, etc.) and pass them out to friends and coworkers. The flyer can be downloaded from http://www.ctf.org/images/pdf/flyeraboutnf.pdf.
7. Tie blue and green ribbons around your car antenna or a tree in your front yard.
8. Have some fun! Wear one blue sock and one green sock, and exchange socks with a friend or family member so they can do the same as well.
9. Volunteer at a hospital or other community event.
10. Share links to information about NF on Facebook and Twitter.

I hope that some of you will take just a couple moments and do just 2 or 3 things on this list to help educate those around you.  Knowledge is power....and it is the power we need to find a cure!

If you do get a chance to do some of the things listed above, or get a chance to do your own things, please leave me a comment.  I'd love to hear what everyone is doing to bring awareness to their community!

PT Evaluation

Sara's first PT appt went well!  The therapist said that her form for walking is very good.  She said she believes Sara just needs some stamina training and a new walker that will work better for her style and she'll be well on her way to being out of her chair most of the time.

We both agreed that we don't see Sara getting rid of her chair completely for several years yet, if ever, but that really will be up to Sara.  In all actuality, Sara will always need a chair to do any kind of long distances...like going to the zoo or on vacation.

Sara will attend PT once a week all summer and then we will assess again where she is at and the progress she's made.  Hopefully it won't take too long to get her new walker.  We meet with the equipment specialist on May 15th, but that doesn't mean much since we have to wait on insurance to decide if they will pay for it (which, of course, takes "forever").

As soon as the new walker is here, I will be posting pictures I'm sure.  And hopefully, video of Sara walking with it so we can get a little before, during, and after going on for all of you to see.

Returning to PT with Big Goals

Sara told me a couple weeks ago she didn't want to be in her wheelchair any more and wanted to learn to walk!  Woohoo!!  This came right after a kid in her preschool class told her she was still a baby cause she crawled.  We've not pushed Sara to walk before now because she had no interest.  She was perfectly happy in her chair at school, and learning to walk is something Sara needs to want for herself before she will be successful at it.  But some times peer pressure isn't a bad thing.

No matter what the driving force is, I always want to support Sara in her goals.  But honestly, I wasn't sure this one would last.  I figured the pain of the kid's comment would fade after a couple days and she would go back to liking her chair.  That didn't happen! 

So I emailed her therapist to get her on the schedule.  And the first day was tomorrow afternoon, almost 2 weeks after Sara had said she wanted to go.  I wondered if Sara would lose interested again by then, but she has not. She's super excited about going tomorrow, and has been counting the days on the calendar all week.

I hope she can maintain this positive and motivated attitude.  She's going to need it because this is going to be hard.  Of course, myself and the therapist will support Sara every way she can to complete this goal.  Sara told me she wants to be walking by the time she starts kindergarten.  That's only about 12 weeks away, so I don't know if its possible.  But if that's what Sara wants, then I will do whatever it takes to try and make that happen.

Good luck peanut!  I know you can do it!

CTF Teams Up with NASCAR to Raise Money

CTF has teamed up with NASCAR for the race on June 24th in Sonoma CA!  Ryan Newman in the #39 will be driving a car with the CTF logo on the hood and a special green and blue paint scheme to help raise money for CTF. The goal is to raise $390,000!

Click here to donate (and get race info)!!

Please click this link and give a donation!  Any donation is appreciated.  And if you can't donate, at least go check it out and pass it on to your friends and family to create awareness!

An Answer to My Question

Ever since Sara was diagnosed with NF, I've wondered if I'm the reason she has it.  How can a mother not wonder if it was her fault her child turned out to be sick with a life long illness??  I know that many people who have NF have very few or no symptoms, and that Sara is the very rare case where the disease just gets out of control.  Her doctors told us that it was unlikely she received the disease from me or her father, but I still wonder cause they can't say for sure.

Well, thanks to a new doctor I saw for the first time last week I will finally have an answer to my question.  She's willing to test me for NF...and get it covered by the insurance!!  The test is VERY expensive and I didn't have a way (or willing doctor) to get it covered before now, so that's why I've wondered for the last 4.5 years.

And now that I have the opportunity to know for sure, I'm not sure I want to know at all.  But if I know, will it really change anything?  Obviously if its positive it won't affect my life and the way I live, and it won't change a thing about how the disease affects Sara either.  The chance that it would start to cause problems for me now is very small; the reason being that the disease thrives on growth hormones...and at my age I'm done with the growing part of life.  But that is the reason its been so progressive for Sara, and she still has puberty to go (when it usually is the most aggressive).  But that's something I can't worry about now. 

I'm nervous, but not scared!  And mostly I just can't believe that I will finally know for sure...was it me?

A Secret Identity? Really?!?

It has been brought to my attention that I am raising no ordinary child!  I've said it many times that Sara's NF presents many challenges that I have to approach much differently because of her physical limitations or her advanced cognitive thinking.  But yesterday I learned something that changes everything...

I'm raising a super hero!!!!  I had no idea that my daughter had 2 identities, and one of them a complete secret even from me!

Last night as I'm cleaning up dinner, Sara is in the bathtub (as is the normal routine).  The bathroom wall is shared by the kitchen, so although I can't see into the bathroom I can hear everything she does clear as if I was right there.  She isn't the quietest child when she's playing.

As I stand in the kitchen I hear from the bathroom the following commentary.

"Oh my God, my goggles!  My super goggles!  And when I put them on I'm Goggle Girl!"

There's a few moments of quiet and then some splashing around.

"You can't catch me Goggle Girl, I'm to good at hiding from you.  No one can stop me from being mean to everyone!"  (All said is a high pitched voice).

"You can't hide from me Evil Mr. Duck, I can find you anywhere with my super goggles.  And no one is mean to my friends in my bathtub."

Lots more splashing with the random "Help! Help!" in the high pitched voice.

"I've got you Evil Mr. Duck!  Your time of being mean is over.  Now say you're sorry."

"I'm sorry!  I won't be mean ever again."  (High pitched voice).

"Yea!  Goggle Girl saves the day again!"


And at this point, I'm laughing so hard I have tears in my eyes.  I wanted to go in and tape it all to share, but I knew if I did she'd stop playing and the moment would be lost.  It makes me remember when the doctor asked me if she had mastered imaginary play.

Imaginary play....check!

Bedtime Fun!

Sara got a new bed...a big girl bed!!  It was built by my boyfriend special just for her.  Its very low to the ground so she can get in and out by herself.  She thinks its amazing, and so do I.  And he's amazing for taking time to do something so special for her.

Sara loves it as you can see from her smile!

Disney Pictures...FINALLY!!!

I know, I know!!!  Many of you have been bugging me about seeing these photos, and I'm so sorry that they are so late.  I won't clutter this post with words, so just enjoy the pics!

I'm waiting to receive my digital images on CD from Disney.  Once they arrive, I will be posting some of those as well.  They're much better than mine!

Sorry!

So I totally messed up and didn't post anything from our trip while we were there.  I had some technical difficulties...and some exhaustion issues each night.  There was a lot going on each day!

But with that said, I'm hoping to get some of the pics up this weekend.  I'm also planning to get more pics up once I get my order from Disney so you can see some of the amazing pics their photographers took.

So again, I'm sorry I haven't gotten it done...but I will...soon!  Promise!

Disneyland - Day 1

Alright, be ready to be upset with me. We were so busy today I just plain forgot to take photos.

We didn't see any characters, and didn't ride much either. We had a good time, saw an awesome parade that Sara was picked to participate in, but I didn't take any pics of it. My dad did, but I don't have them yet. I shot a great video of it, but I can't post that from my iPad app.

Hopefully I'll do better tomorrow. And I'll post some of the videos when I get home next week for you to enjoy.

Sorry to disappoint, but know that we're having a great time!

The Big Reveal

Tonight I told Sara that tomorrow we are heading to Disneyland!  We are going with my dad, my sister, and my nephew...but Sara doesn't know her aunt and cousin will be joining us until we reach the airport tomorrow!

And here is Sara's reaction...think she might be a little excited?

I'm hoping to post some pictures from each day we're there when we get back to the hotel each night.  As long as my new iPad app works (and I can figure out how it works), there will be something to see each morning for the next few days!  I hope you all enjoy it (assuming I get it to work).

Trying Something New

In preparation for our upcoming trip, I'm trying out a new app that allows me to post from my iPad. I'm not taking my computer, do hopefully this will work and you'll be seeing this post. And that means I'll be posting pics every day from Disneyland in just a couple short weeks.

This is just a test photo from our last trip.

To my baby...

Happy

Birthday

Sara!!

I hope today brings you all the love and happiness this world has to offer...you deserve it!

I love you!!

What's next?!?

This new year (and the last bit of last year) has been really hard on everyone in my life.

It started with my step-mother's very sudden (and unexpected) death.  And as we just barely had begun to pick up the pieces, Christmas and New Year's showed up.  We pulled together as a family and made a nice holiday for Sara, but there was definitely something missing that Christmas morning.

A couple days before New Year's, Sara's father told me that his grandfather had passed away.  Sara has lost another family member in a matter of weeks.  It was also a struggle for me, since I met the man several times while we were together and he was always sweet to me.

Three days into the new year, I got a call from my sister.  She's in the hospital with an appendicitis.  I stay the entire night in the ER with her and wait patiently in the waiting room as she has surgery early the next morning.  She's doing great now, thank goodness!

Next, just last week, it was my boyfriend who was headed to the doctor for some alarming symptoms...and to the hospital the next day for testing on his heart.  Luckily, everything turned out okay and his heart is fine.

And now as I sit and type this, my sister has called me again to tell me that my mom now sits in an ER half way across the country.  And what do they suspect is wrong with her....an appendicitis.

Really?!?!?!  Can this be for real?!?!?  I can't take a whole year of this.

But through it all, I have some how managed to keep a small piece of my sanity.  I'm in a constant battle with myself to find something good to hold on to.  And on Tuesday, it finally presented itself.

As a small way to help our family heal, my dad has decided to take a trip to Disneyland.  He has asked myself, Sara, my sister, and her baby boy to join him.  This trip is to help heal our hearts, to create new memories as a changed family, and to heal relationships between each of us.

It follows right after my baby's 5th birthday (OMG, she's 5!).  So first we have to get through Sara's party.  Honestly, I'm not at all excited about it.  I'm just so overwhelmed by everything else right now I can barely find the time to prepare.  This party is going to be a total throw-together-at-the-very-last-minute kind of deal.  I want to be excited, but I just can't.  I'm lucky that I managed to get out just a few invitations in a timely manner so that at least a couple of Sara's friends would come.

But for whatever reason, I can focus on this trip and see great things.  Thinking about it makes me feel happy, and somehow, a little more relaxed.  I decided to make it more fun by not telling Sara that we were going.  The plan is for all of us to meet at the airport and tell her there.  I can't wait to see the look on her face.  And I can't wait to tape it and share it with all of you!  I also plan to blog and post pictures each day since there's free wifi at the hotel.  Be looking for all the fun to happen Feb. 16th to the 21st! 

New Year Update

Well, the last bit of last year and the first bit of this year has been crazy!

Christmas was as good as can be expected.  It was hard to have my step-mother missing, but it was nice to have the family together and the distraction of Sara's amazement at the gifts Santa brought her.  It was a small, simple Christmas...but I think that's all any of us would have been able to handle.

New Year's was wonderful!  Sara was with her dad so I got to spend the evening with my boyfriend, and it was just nice to sit and relax for the first time in a while.  Between Thanksgiving, birthdays, Christmas, and Amy's death, it was just nice to sit an have no worries...even if only for one night.

Right now life is still crazy.  There are still lots of things going on, mostly revolving around my step-mother's sudden departure.  Today is exactly one month since her death.  I still have trouble believing she's gone, and today was especially hard.  I'm so glad that I can find peace in all the people I work with.  Since we are all mourning her together, its comforting to know I'm with people who knew her and cared so much for her like I did.  In case you didn't know, she was our company's CEO.  Its also nice to see my dad everyday, to have that closeness at such a hard time.  They worked at this company together, building it and helping it grow, and then bought it from the original owners years ago.  I think both my dad and I find some peace in keeping it going in her memory.  It makes it easy to go to work these days, easier than its ever been, and I know that everyone is giving it their all.

But also this month brings one of my favorite days, which is my little peanut's birthday!  I can't believe she's going to be 5!!  How did she get to be so big...and old?!?  She's such a big girl, with a big girl attitude to match.  She is always growing and learning new things.  Its amazing to see how she views the world around her, and how that view is constantly changing. 

Sara is very excited to have her birthday party, which has a Disney Cars theme this year.  I went small this year, unlike last years blow out.  And I'm sure I will be posting pictures once the party is done.  I can't wait to share them with you.

And yes, as one of my new year's resolutions I'm hoping to be posting more.

Visit with Santa

We went this weekend to finally tell Santa what Sara wanted for Christmas!  Sara is in the prime of believing in the magic of Santa, and its amazing to see.  She told him she wants a new play kitchen (check), and a new Cars video game for her Mobigo (and check).  Of course, Santa promised to bring her everything she wanted.

We also had the other kids with us as well, so everybody got their turn, even the newest one.  Here are a couple of pics I thought you all would enjoy.

Merry Christmas everyone!  May you have a truly magical holiday!

Rest In Peace

Yesterday ended on a very dark note in my family.  I spent the evening at my dad's house with him, my sister, my step-mom's parents, and my boyfriend.  We were all gathered there, with the police and the coroner.  My step-mother, Amy, died at home!

I don't think its sunk in for any of us yet.  It was so sudden, and the wound so fresh.  All of us keep wondering if there was more we could have done to help her.  She was sick such a very long time.  I'm glad she's no longer suffering, but I wish there was something we could have done to make her better.

Of course, I am doing all I can to support my dad through this very difficult time.  All of us are.  I'm worried about his MS, and how it will be affected.  I don't want him to have a relapse and this already incredibly difficult time be even worse.

And through it all, I keep thinking of Sara.  She's with her dad right now, and I wish she was with me so I could hold her and tell her how much I love her.  But she needs to be with him while I help my dad make arrangements and deal with insurance and things.  Plus, how do you explain death to a 4 year old?  Its something I'm not ready for or know how to do.

Rest in peace Amy

You will be greatly missed

Love you

Woof