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!