Wednesday, January 18, 2012

Perfect Strangers

While reading another mother's blog today I came to realize how becoming a parent instantly connected me to a world I never understood and never could without the help of my beautiful children.  My heart aches for people I have never met and I feel some unexplainable connection to them, simply because I too am a mother and now I get it.
Today I got a message from a father all the way in Australia saying how he can't imagine what we are going through.  To tell you the truth, I don't even think I am processing it. I am trying to stay busy so I don't have to think about it.  I am trying to spend every second that I can with my babies and smother them with kisses.  I find myself running my fingers through Ruby's hair, imagining what she will look like when her silky blond hair is gone.  I try not to think about that because it only upsets me, but it is impossible to completely block it out.  The thoughts are like Chinese water torture, slowly tapping away on my face.... tap.... tap....tap until I totally lose my mind.  Well, I am trying not to lose my mind by focusing on things like the playground project and my job, but sometimes it creeps in and takes over.
I wish there were a way to just fast forward the next two months and be done with all of this.  It is exhausting.  On top of that, I have to try to go on with my life like normal.  It is tough sometimes.  Occasionally I just want to curl up in a ball and hide somewhere, but that is not possible.  I have two babies to take care of and lately Oliver has been really sick and has been keeping me up all night and cries unless I am holding him.  Needless to say, that is also exhausting.  Hopefully he will be better soon and I can get back to snuggling with both kids equally.  Right now little Rubes has just had to be a good sport while I take care of Ollie.  And she really is a good sport.  She throws her typical tantrums here and there, but in general, she is a great big sister and such a cutie.  She gives really good hugs and says please and thank you all the time.  I am a lucky mommy.
The whole point to this was to say that I get it now.  Us parents are in a club that I didn't even know existed until now.  And us parents of kids with special needs are in a whole different club that may even speak another language...I'm not sure.  It is something I would never in a million years have thought I would have to deal with but I can tell you one thing for sure.  I have never been more compassionate.  I have never loved so many complete strangers or felt the love of complete strangers.  I never knew that someone I've never met could feel like a close friend.  I just didn't get it.  Now I do.

Friday, January 13, 2012

A place to call home... at least for a little while

So, I was finally able to get our lodging situation figured out.  Thanks to my step-dad Clint's neice Theresa, we were able to get hooked up with a great little apartment only a few blocks from the hospital.  I am very excited to have a comfortable place to rest during this whole adventure.  It also gives me a little bit of peace that we will all have somewhere to stay and many of us can stay there together.

So, our lodging is covered.... We have applied for a grant with the Wings Foundation to help with some of the costs of renting the apartment and hope to hear back from them soon.  We looked into the Ronald McDonald House but it just wasn't going to work for us.  I know that if I didn't have Oliver it would be fine, but I have to think about him and try to make the stay good for him as well.  If he were older it probably would be super fun for him to be there, but he is still a little young.

I am looking forward to the benefit that Jason's friends are putting on.  I really don't have very much information about it but I am sure we will know more as it gets closer.

Well, that's it for today.  I will leave you with this...

Wednesday, January 11, 2012

A good thing from good guys....

So I was approached by some friends of mine about this, and as always, was very humbled by the support. I may be just a little bit ahead of them by putting this flyer up, but I was too excited to wait. We cannot express the ammount of gratitude we feel that the Deathtraps MC wanted to do this. This will be a great gathering and it sound like there will be some good motorcycle things as well as skateboard things up for auction...Ride your bikes, drive your cars, we hope to see ya there, even if you just want to stop by and say hi!!!

Sunday, January 8, 2012

An idea that has been pulling at me.... What do you think?

The last couple months I have been thinking about how I could help improve the lives of children in our community that have special needs, especially mobility issues.  After having Ruby I have become profoundly aware that there is NOWHERE for children to play who are even just mildly physically challenged. 
Playing on the swing is Ruby's
most favorite thing....

Many times my friends and family have invited me to come to the local park with them and I usually decline.  Only until just recently we discovered a little play structure next to the Tuolumne branch library.  But that is really small and even that park is difficult to get up to from the car.  Having two small children makes it virtually impossible to go play outdoors because I would have to carry them both to where ever we went, and it was just much more work then I wanted to deal with.  Even now, at 2 1/2 Ruby has a tough time getting around on very uneven surfaces and if there is a play structure that you must climb up to really enjoy, she cant do it with only one arm.

Not being able to go outside and let her play with other kids at the park has always been a very emotional subject for me.    I am sure any of you who have kids with any special needs you will understand how I felt really alone.  All the "normal" things that other kids and parents were doing unintentionally excluded me and my little girl.  It is also hard to describe to friends and even sometimes to family, that going to the park is heart breaking.  It is yet another reminder that my child is "different" and can't do the things that kids are supposed to be able to do.  I always looked forward to taking my children to the park but now it is so difficult both physically and emotionally that I end up just staying home. 

I know that I am not alone in these feelings.  It is because of this that I have been looking into what it would take to get a playground built nearby (ideally Willow Springs Park) that is completely accessable to children of ALL physical abilities.  No child should have to miss out on the ability to enjoy the outdoors.

If you haven't already watched the video above, please do.  I have been looking for grants online and I think I will soon be going to a Willow Springs Association meeting to propose something, but I would love if I could get some support from others and maybe even some suggestions if you have ever done anything like this.  I know there are local resources such as the Sonora Area Foundation, that may be interested in helping but I have never dreamed I would consider taking on a venture like this and have no idea where to begin.

Wish me luck.....

Wednesday, January 4, 2012

The date is set... Finally

So, we finally know when it is all going down.  Pre-op February 23rd, first surgery (inserting the EEG pads on her brain) will be February 27th, and the main surgery will be Friday March 2nd.  I am not sure how long we will have to be down there.  It all depends on her recovery and the extensiveness of her rehab.  If she has a major set back, we will be down there longer so they can provide her with more therapy. 

I am still working hard to find a place for us to stay while we are there.  I have found a few promising leads and now that I have a date it is much easier to inquire about lodging.  I want to make sure we are all as comfortable as possible, especially Oliver.  There is no way I could pin him up in a tiny hotel room for three weeks.... That would be a nightmare for all of us. 

Keep little Ruby June in your prayers.  Thank you all so much.

Tuesday, January 3, 2012

Our blessings

I want to share with you some positive things that have happened the last few months. I feel like I have spent a lot of time sulking so I want to share some of the amazing things that have happened to our family. First I am happy to announce that Oliver took his first steps on New Years day. He just started walking like it was no big deal. He took four steps a few different times but since then has refused to do it again. Little stinker!
I want to thank you all so much for all the prayers for our family and want you to know they really have been creating miracles for Ruby and our whole family. Ruby still has not had any of the "drop seizures" since right around thanksgiving. Thank you God. It has been such a huge weight off my heart. Then our home loan company sent us a letter stating they have adjusted our home loan and it is going to lower our payment substantially every month. Then I got my job back, which I am loving. Then that crazy windstorm came through and damaged our roof so badly that our insurance company just bought us a new roof. It was going to need to be replaced this winter anyway. That wind saved our family like five thousand dollars.
So, although we have had lots of stress and anxiety in our lives lately, it has been peppered with some truly wonderful things as well. Please continue the prayers and thank you all for your love and support.
If you are interested I believe Jason has more of the black " Ruby June" shirts available. They are super cute I will post a picture when I get a moment.
Happy New Year!