Monday, September 30, 2013

Quite the little talker

This is Ruby's response to the large photo of the Universally Accessible Playground that will be built in Tuolumne, Ca. I think she likes it.

Friday, August 30, 2013

Our community at it's finest

American Fire - Photo by Jason
As you may know, our community has been dealing with one of California's largest wildfires in recorded history.  Our homes and our history have been threatened with distruction for the past seven days and just now we are feeling some relief.  The fire creeped within a mile or so from the community where I grew up and where many of my friends and family live today.  We were on an evacuation advisory for just under a week and smoke is still thick and painful.  It is not only physically painful to myself, causing some majorly uncomfortable coughing spells, but it is also an emotionally painful sign of the devistation of the beautiful National Forest the sits just a few miles from my front yard.
This past week has been incredibly challenging because as the fire raged closer and closer to our home, Jason was away fighting another fire.  It was tough for Jason and myself.  He wanted desperately to be home, defending our community from this inferno but could not leave another community he committed to defend.
I have been left behind many times in the past 14 fire seasons with Jason, waiting and worrying but this fire and this trip was different.  There are a few reasons.  Firstly, the tradgedy of the 19 firefighters lost in Arizona weighs heavily on my heart as well as on the heart of every man and woman who stands at the fire's edge, defending our homes and our lands.  It is going to take a long time for that to not be one of the first things that all the fire fighters think about when they come upon an active fire.  Secondly, the thick smoke that has been blanketing our community is a reminder of how it must be every day on the fire lines.  I wake up and think how miserable this smoke is and what a badass my husband is for dealing with this all the time and never, truely never, complains.  He always just says it is part of the job.  Lastly, I have never been more proud of him.  I have seen photos and news shots of people standing on the side of the road holding signs, thanking him for his hard work and for saving their homes, but until now I didn't really understand it.  I know he was away, not yet working on this "Rim" fire, but he is out there working his butt off, in the sun, in the dirt, in the smoke, hot, sweaty, hungry, tired, with achy feet and back, and still never complains.  He just gets up and does it again the next day.  He is a hard working man and I honestly can say I have never been more proud to say that I am married to a bad ass "Forestry Technician". 

American Fire - Photo by Jason

This fire has once again shown me how proud I am to live in this community.  When we were struggling with Ruby's upcoming surgery and I was terrified of what could be, this community surrounded me and my family with love and support like we have never seen.  What ever we needed they/you were there to provide.  It was the beginning of a new found respect for this community like I could have never known without the adversity we faced. 
And now, with this fire, I have seen our community come together, no questions asked, dropping everything they had going on to show love and support to the men and women who put their lives on hold to defend our homes.  I know I am biased because of the man in my life, but I want to remind our community how many more men and women are still out there, standing next to the flames, running chainsaws, putting in dozer line, using nothing but a shovel and a rake and the muscles in their backs to put this fire out.  It is still moving and will be for a while.  Our community has been amazing to thank the firemen/women in the cities and towns but please remember those who have been on the fire line this entire time.  You probably haven't seen them because they haven't left the fire and basecamp.  US Forest Service and CalFire folks have been working hard so please be sure to thank them too. This fire is far from over.

This photo is totally unrelated but I thought it was cute.

Wednesday, July 10, 2013

She's Amazing

I could write on and on about how incredible Ruby's progress is or how darn cute she is but I thought it would be more interesting if I showed you with some recent photos.

Ruby and her brother, Oliver, play together so well and it is really fun to watch them interating with each other.  Ruby always makes sure that Oliver is following directions, although she likes to test our boundaries all the time.  She is a really good big sister.

Her smile is contagous and her hair is growing back nicely, although it is so thick that it is typically all crazy. It is finally long enough to put up in tiny pony tails.

Ruby had the pleasure to take swimming lessons this year.  She had a blast and did amazing!

Tuesday, April 23, 2013

Daily Surprises

Ruby has been totally amazing me every day.  I don't have a whole lot of time to describe all the great things that have been happening but I would like to share a few of my favorite moments.

First of all, Ruby has taken a strong intrest in riding bikes, both those with pedals and her glide bike (two wheeler that doesn't have any pedals).  Her balance is really quite good considering she only has the use of her left hand.  She works very hard to get her right hand on the handle bars, which is helpful in maintaining her balance on the bikes.  The other day I cought her on the side yard of my mom's house practicing riding a tricycle and working very hard to keep both feet on the pedals and get herself going.  When she noticed my mom and I were watching she told us to "go away".  She was practicing for herself, not just doing it to make us happy.  She was doing it for herself and was working very hard.  I was over the moon watching her little stubborn ways paying off.  Her physical therapist told us when she was really young that although she was protesting therapy, she was strong willed and that when the time came and she decided she wanted something, her will would push her to accomplish things.  This is becoming more and more apparent as I watch her working quietly to pick up something with her right hand or when she is working on keeping her feet on the pedals of a bike.  She has learned that she can do it, and really really wants to.  She is also totally awesome at riding a swing.  I was never sure if she would be able to ride a regular swing because it requires good balance, stability, and the use of two hands to hold on to the chains.  Well, I guess I was again, underestimating what she can do.  She rides that swing as high as it can go, pumping her legs and making it look easy.  She loves the swing.

The next thing Ruby has been doing is during reading time before bed.  She has been memorizing the books we read at night.  I know this is a very normal thing for kids to do, but that is just it.  We have been given the worst case scenarios from doctors so I think I have just tried to keep my hopes a little lower so I wouldn't keep getting my heart broken when we learn of something new that will be challenging for her.  Every time she does something that she should be able to do or what "normal" kids can do I am so excited.  I really enjoy reading.  I love how reading can take you anywhere and all the knowledge that comes from reading about something new.  Seeing Ruby remember the stories and memorize parts of the stories, learning new complicated words, and being shown something new makes me really happy.  I love to see her enjoying a book and also when she recites it back to me.  It is one of the moments I remember watching my little brother do with my parents and I really looked forward to it as a parent.  Maybe it is silly, but it shows me that Ruby really can do more than I give her credit for and that her abilities are quite astounding.

These photos are unrelated to the stories above but I wanted to share with you our Easter picturs.  The kids looked so cute but wouldn't you know it, I turned my back for two minutes and found them shin deep in a mud puddle.  Last year I was so burnt out from all the stress I probably would have lost it or cried.  This year I grabbed my new camera and just let them go for it.  It feels nice to feel sort of normal again, although there are moments I still feel a little left over anxiety and stress.
Please enjoy these great photos.

On March 2nd, Ruby's One Year Post Surgery Anniversay, Jason and I participated in a fun 5K race.  We did this to celebrate surgery success for Ruby as well as honor the memory of Lucas Gruenther, an avid runner, a loving husband, and a friend.  RIP Luc

Thursday, February 28, 2013

The gap

Both up AND down little trooper always amazes me

Friday, January 25, 2013

Big Dreams for our family and community

I am excited to announce that I am offically the president and founder of a local non-profit organization who's purpose is to bring joy to families like mine all over our community. 
Big Dreams Parks and Playgrounds, our non-profit group, was created to build parks and playgrounds in our community that serve people of all ages and abilities.  These parks will specifically address the needs of children and adults who are unable to use traditional play equipment due to a variety of physical and developmental disabilities.
Have you ever wondered how a child who is in a wheel chair, who is blind, who is autistic, or who has a physically disabled parent can play outside?  Traditional playgrounds and parks pose very real challenges to children and adults who have these challenges.  For example, a child in a wheel chair or who uses a walker can not even access the play structure at many parks because the surface around the structure is either bark or sand.  Neither of these types of surfaces are condusive to rolling on.  So, unfortunatley these children either sit on the sidelines and watch or their parents choose to stay home rather than subject their child to another day of feeling left out and different. 
I can speak from personal experience that when Ruby was little I really wanted to be able to take her to play outside.  I love being out in the fresh air and love watching children interact with eachother and meeting other parents.  Well, with Ruby, she was not physically able to walk until she was 2 years old, and even then it was quite a while before she could make it up stairs and no way could she climb a ladder to access any of the play equipment.  So, I stayed home.  Friends would invite me to meet at the park and I would make up some excuse why I couldn't go but the true reason was that it really depressed me.  I hated seeing my child excluded and also, I was pregnant when she was still small so I couldn't lift her up onto everything or carry her around the park.  She was too big and I was too pregnant.  I really felt isolated and sad that my child was missing out on such a fundamental part of being a child and also that I was missing out on the chance to see my friends and meet other parents. When Ruby got older and Oliver was at the age where he wanted to play, I still couldn't take them because although Ruby was walking, she couldn't safely play in the playground without help and so, again, I stayed home.  Depressing right?  Well many other siblings, like Oliver, miss out on the opportunity to play with their brother/sister because the park is not accessible or not safe for them.
I was really sad, angry, and frustrated and decided I was going to do something about it.  I began researching parks and trying to see if there was anywhere we could go where Ruby could just play without my help.  I came across an organization called "Shane's Inspiration".  This is a HUGE non-profit organization that is building playgrounds all over the country that are accessible to children of all abilities.  I was thrilled!!  It was right then that I knew I had to build one here so that no other parents had to feel how I felt for so long.  During my research I have learned so much about what the "typical" playgound is lacking and who was not being served.  WOW... I really had not idea the true extent in which our parks were unintentionally excluding a huge number of children and their families.  I also learned the importance of building a park that is challenging and fun for all children.  It is not just a "handicapped" park.  It is a park for all children.  There must be elements that are fun for both the child with special needs and their family and friends.
Have you ever wondered what a parent who is in a wheel chair does when they want to take their child to the park?  Can you imagine having to send your small child out into a park and not be able to help them or be at the bottom of the slide to catch them because you can't get through the sand or bark?  Honestly, I hadn't thought about it either.  But now it seems it's all I think about.  I hate that there is even one sunny day where a child or their parent is stuck inside because there is nowhere safe to play.  NOT ON MY WATCH!
If this is new information to you, I just ask that you think about it.  Take a look at your local playground through the eyes of a parent or child with a disability and think if it is somewhere they could play.  You will begin to see that it is not.  Very soon our non-profit will be doing a large public outreach campaign to share what we have learned about the need in our community and also we will be doing some large scale fundraising.  These parks are not cheap, which is a big reason they are not built very often.  We will need to raise somewhere in the range of $250,000 to build our first park.  That number may seem totally out of reach but there are many ways to raise the money including government and private grants and community fundraising.  Also, we can get donations of supplies such as concrete, gravel, physical labor, etc.  All of these things will help lower our costs but each are vital to making this project come to life.

Thank you so much for following along with our amazing and challenging journey with Ruby.  She is doing really amazing.  She is completely off her seizure medication and seems to be doing great. 
If you would like to follow along with this park project or if you'd like to get involved check out or join our facebook group at

Saturday, January 5, 2013

New start number 2

We are so sorry for the lack of posts on here, we will try to do better for 2013!!! Things have been crazy around these parts during the holidays like we hope everyone else has been. SO...Today is Rubys 1st offical day off her medication!!! We are so excited but of course there is always that little bit of uncertianty. It has taken 8 weeks of slowly stepping down dosages to finally get to this point. Its almost surreal because it has been a part of Rubys routine for the last 3 years that it almost dosen't feel right to do....but we are relieved to finally get her off of it. Of course, she had to catch the flu last night so the poor little girl has been sacked out on the couch in misery, shes been a good sport about it today though with her silly little comments during her awake periods.
  It other notes during the holidays, we took the kids to Railtown for their first steam train ride and now neither kid can stop talking about trains......I think we have watched all the Thomas the train episodes in a day! Santa was on the ride and Ollie was not having it. Ruby on the other hand was a little more receptive to him this time around, after not wanting to sit on his lap at school and a few other places. We also tried to start the kids potty training. Its been hit and miss. Ollie has got the concept down just not the letting someone know, he has to be told. Ruby takes a little more coaxing and still has really only peed once or twice on the potty chair. She will come around though...practice makes perfect.
   Sarah has been doing some great things on moving forward with the universally accessable playground for the area and we are very proud of her great work! I'll let her explain more on that later. Other than that, here are a couple pics from over the holidays, Hopefully Sarah can post more off her phone. We hope everyone had a great New Year and wish everyone the best for 2013!!! We will see ya soon   -Jas