Our Big First Grader

It has been over a year since my last update.  Things are going really well for our family.  Ruby has started first grade.  She has lots of friends in her class and she really likes her teacher. Oliver has one more year until he starts Kindergarten and he is a little comedian just like his sister.    

She did three sessions of swimming lessons this summer and by the end she was swimming on her own.  She absolutely loves the water. If we had a pool I am fairly certain she would be in it all day and night.  I am not sure there is anything on Earth she loves more then playing in water.  Oliver also did swim lessons and went from not hardly wanting to get in the pool to going under water and really trusting his instructors.  It was nice to see him acting like such a big boy. 

Ruby is on a soccer team and has been really enjoying it.  She is so darn cute when she's playing.  She has a smile on her face the entire time.  I bet her face hurts when she is done just from smiling so much.   She is learning a lot and is always so happy to go to practice and her games.  It has been nice to see her so excited about it.

Lately she has been feeling a little down on herself with her school work.  I am not sure where her insecurities are coming from or if she is just trying to manipulate us into not making her do some of her work.  She really is pretty smart like that.  She has a lot of positive support at school and teachers who are very supportive of her. 

This morning she was working on her homework with Jason and made a few comments about being bad at math and how her brain doesn't work.  It made me wonder about whether she is feeling this way because of her own struggles or if she is hearing things from kids at school.  

One of my biggest fears about sharing Ruby's story is that eventually parents would talk about her to their kids and the kids would make comments to Ruby about it.  We have not spent a lot of time talking about her medical stuff to her.  We have told her that when she was younger she was in the hospital for a while so that doctors could fix and "owie" she had in her brain and that they were able to fix it.  We have not explained the extent of what was done because there is no way she would really understand it yet.  

She has started asking a lot of questions about her body and why it is the way it is, like if my right hand was like her right hand when I was a kid and if her right hand will get to be big and strong like her left hand.  My answer has always been that everyone's bodies are different.  Her right hand will get stronger but it might not be as big and strong as her left hand and that is totally okay. I have explained how some people need glasses to help their eyes see better, some kids and adults use wheelchairs or walkers to help them walk, and some kids wear braces on their legs like her to help keep their legs nice and strong.  I have told her that we are all different and that it is okay to be just like you are.  But again, I fear that maybe in our small town, people will talk and kids hear everything!  When you don't think they are listening they are and they remember everything whether they understand it or not.  Don't get me wrong, I am happy we have shared our Ruby with the world and gained support from perfect strangers.  We needed the support and really appreciate it.  So sharing her story has been a very positive thing for us.  But now that she is older, the reality of sharing a very personal medical condition is setting in.  She isn't a baby anymore and people can say strange things about people who are different, even when they have very good intentions, especially children.  They do not know how their words can hurt and stick to a person for a lifetime.  


The main purpose to this post I guess, is just to think about what you say to your children or around your children and how you talk about children and adults with disabilities.  As for Ruby, they don't need to know the details about her story. She is just like everyone else.  She is super funny, has an amazing memory, is a great reader, loves to make others smile, loves hugs, and wants to be just like her friends. That's really all there is to it.  All the other stuff is not important.

Kindergarten and summer vacation

Ruby graduated preschool this year and is now a big kindergartener.  

 
 

She is doing amazing and has started kindergarten with her cousin, whom she adores.  She has told me so many times how happy she is that he is in her class.

  

She and her brother did swim lessons this summer and absolutely loved it.  Ruby is a water lover and is really the happiest when in the water, as all of her teachers and family members will attest to

I am not sure if there is anywhere on Earth Ruby would rather be than in the pool.

It took a little while for Oliver to warm up to being in the pool but eventually he was loving it too.

 

Thankfully, life for us has been very uneventful.  Ruby is making amazing progress every day, both physically and intellectually.  She loves her brother and is a really good big sister.  Her brother is quite a character, as is she.  They love to make each other laugh and have been having "sleep overs" almost every night lately because they really enjoy each other's company.  I am so blessed to have both of these little ones.

Thank you for following along our journey.

 

 

The Adventures of Ruby and Oliver

It is hard for me to look back on pictures like this and really believe this is the same child that wakes up chatting my ear off every morning.  It has been over two years since Ruby's Hemispherectomy and so many wonderful things have happened.

I know I write this every time, but Ruby is amazing.  Never in a million years would I have believed how well she could do after such a drastic surgery.  Don't get me wrong.  There are bad days.  We still hear news every once in a while that takes me down a notch from my excitement on her progress.  But in general, she is doing amazing.  

 

This video clip is of Ruby explaining what she would do at the park.  She is looking at a rendering of a park that is going to be built in her honor.     

       She has been such an inspiration to me and has opened my eyes to the world in a profound way.  I am not saying she is a perfect angel all the time.  She has outbursts like all kids do and has the will of a Lion.  When she puts her mind to something there is no getting around it.  It is very challenging for us sometimes but when it comes to what she can and can't do.... When she wants to accomplish something- Watch Out!

We recently took a trip to Monterey and the kids loved it.  We were celebrating 2 years seizure free!  It was a great time and a really nice chance for us to have a weekend with no distractions where we could just enjoy being together with no stress.  We've had enough of that for a lifetime.

Ruby will be entering Kindergarten next year with her cousin, which is very exciting.  She will be in a mainstream class with her peers.  So far, we have noticed very little in terms of intellectual deficits because of her stroke and surgery but just like anything in life, only time will tell.  All we can do now is offer her what is available and love the crap out of her.
Her little brother, Oliver, is quite the little firecracker too and I strongly believe that he has helped enhance all of our lives.  He is a really good little brother and takes orders well from his very "helpful" sister, although he is just starting to see that he doesn't actually have to do everything she tells him to.  It's getting very interesting.

If you want more information about the park that is being built with inspiration from Miss Ruby, you can check out our new website at www.BigDreamsPlaygrounds.com

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.

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.

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!
 

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