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Sunday, April 22, 2012

Anyone care to talk me out of this?

I'm not a runner.  I don't really even like running.  A few years ago, after I had Avery I ran a few 5k's which were a lot cooler than I expected them to be-and so challenging.  I knew I would never run a marathon, or even a half marathon (or really even a 10k) and I was only doing it to show myself that I could-then started to try to get a little faster each time-which I did!  I stopped after a few and hardly ever run for exercise now.  I ride the bike at the gym and strength train.  Havent been on a treadmill in ages, although I did do an outdoor run/jog about a month or so ago. I work out regularly, yet remain plateaued as far as losing the weight I want and getting in better shape.  I have recently been trying many different ways to do this with no success (no gluten, smaller portions, shakes etc).

About a week ago, Team Rett (a group of 20 or so which included two moms that I know) ran the Boston Marathon.  Altogether they raised over 108,000 for the Rett Syndrome Association of Massachusetts to support the IGF1 trial at Children's Hospital Boston!  I could never actually qualify for a marathon-especially the Boston. I would only be permitted in if I ran for a charity. 

Im actually thinking about trying to do it in 2013. 

I know.  Nuts. 

I shared this with Red and he was really surprised but very supportive and kind of pumped that I was even thinking of it.  It would be a huge accomplishment and a great way to raise awareness and money for Rett syndrome.   He even said the whole family would go out to cheer me on.

Oh god, Im nervous just writing about this.  Seriously-anyone want to talk me out of it? Or, maybe join me?  Im going to have to start training like yesterday.

Tuesday, April 17, 2012

oh tahoe.

Tahoe.  Gorgeous Lake Tahoe.  I once thought it was a cheesy RV park only visited by retired people in Winnebagos.

Little did I know.

My first visit was in September of 2000-for a wedding-the weekend I met my husband.  (The wedding was his cousins-whom I had known since I was 3) That weekend was literally magical. Ill never forget driving in with my mom and brother and the moment I first spied the lake.  My jaw honestly dropped. "Thats Lake Tahoe???" I fell in love with the lake that weekend-and with Red.

I have been back many times in the last 11 years or so-most recently two weeks ago.  It was a last minute trip-we were invited to stay with our wonderful friends in their cabin on the lake and would be joined by another great family as well.  I wasnt sure how Avery would do but we went for it. Nolan was so excited to see the snow and we planned to take them both sledding.

It was a great trip.  Both kids did well on the ride up-Nolan loved the sledding (Avery not so much).  But the one thing Ill never forget-or get tired of-was watching the snow fall.  There is just something so peaceful about watching snow.  Especially with the lake as the backdrop. It is so quiet-and I dont get a lot of quiet. 

Sure there were tough times-watching the other kids run around and play-watching Avery melt down in the snow while sledding-but I swear those few moments I took to just watch the snow totally cancelled that other stuff out.  Being with great friends, in a beautiful home, in one of the most amazing places on the planet-doing something as simple as watch the snow fall-even just for a few moments-reminded me just how lucky we really are.  And that is not lost on this stressed out mommy-not for a second.
(I have pictures-but of course my computer is being very finicky-hope to get some up tomorrow)


Sunday, April 15, 2012

today we did something i never thought we would do.  we took the kids to Six Flags Discovery Kingdom in Vallejo. why?  our neighbors invited us.  so we went.
but it wasnt really that simple.
our neighbors moved in a while ago.  like over two years ago. and we have never really hung out.  and they have kids almost the same age as ours. i know.
so recently, via facebook, we realized we had a mutual friend.
so then we became facebook friends and started trying to make a plan to hang out.
we invited them for lunch, then Avery got sick and we had to cancel.
we rescheduled, and I got sick. seriously.
so then they mentioned they were going to Six Flags and asked if we would like to join them.
I said SURE! thinking how in the world are we going to take Avery to a huge amusement park??
Red said, sure lets take Nolan.
Ouch.  We were both really thinking the same thing.  We cant take Avery. No way.
We discussed it one night before we committed and I cried.  sobbed.  hated that it couldnt just be an easy simple decision.
But then we just decided to go for it.
Well, we really went for it.  We got season passes, got in the car and went.
We arrived at about 10:30 right when it opened, got to the entrance, got through the metal detectors, then went to the season pass processing center- and got through that.
We then went on our first ride.  Totally underestimated the spinning power but it was fun and Avery seemed to dig it.  By then Nolan and our neighbors son were best buddies.  Nolan was making himself at home in their stroller too.  Red and I took Avery to eat lunch while Nolan went with our neighbors to the Tiger show.  He loved it. We rested a bit for everyone else to eat then went to the Killer Whale show.  Avery was pumped.  So pumped.  She was screaming a bit so Red took her up to the back a few times.  We got a couple stares from the kids in front of us-Red was trying to give them the evil eye, but I just decided to wave.  Waving worked.  The boy that was staring then said to me "today is my birthday!!" and that made it all ok. The show was great.  Best part was watching all those fools that sit up front get doused with whale water.  Eww. After that we made our way to the kids area.  Went on a couple rides and all was going well.  Avery was doing so great-I couldnt believe it.  She had been fairly quiet and seemed happy.  Then Red decided to go on another ride with the kids-some air balloon looking thing.  He took the two boys and Avery and I was in the next balloon with neighbor dad and their little girl.  Another ride we underestimated.  Went WAY higher than I thought and you could spin the crap out of it.  Red got a little spin happy and, yep, you guessed it-Avery tossed her french fries.  closed the ride down.  whoops.  So we took our cue and said our goodbyes and left.
this was the one that made her puke!
loving the killer whales!


waiting for lunch

on the frog ride!

Nolan and his new buddy Cayden!

When we got on the shuttle back to the parking lot I was all smiles.  We did it.  We last longer than 45 minutes (nearly 4 hours!) and sure Avery puked but that is something any typical child might do.  Her Rett syndrome never really got in the way.  Except maybe being able to say "I think Im going to puke!" But by then its too late anyway, right? I never thought we would be able to do what we did today.  But we did.  Thanks neighbors!

we got home, got some Coors Light, and all went out in the yard.  It was about 73 degrees and I had some planting to do.  perfect.


Wednesday, April 11, 2012

Last monday I attended a funeral...for an 11 year old little girl...who had Rett syndrome.
it hit hard. I knew this girl, she was a clinic patient and I had just seen her in January. Families that I have become close to knew her very well...we were all overcome.

Many of the clinic staff attended the funeral along with several of us "rett parents".  We leaned on each other, held hands, passed tissues.  We cried.  I can only speak for myself but I believe we all had moments when we pictured our own daughters in that casket. It was the hardest thing I have ever done.  And that is saying a lot because  I have also attended the funerals of both of my parents. This was different.  It was for a child. A child like my own. It could have happened-could still happen to my Avery.

I sobbed almost uncontrollably as they carried her casket into the church.  Her pall bearers were men of all ages, dressed up in their finest with white gloves on their hands.   All wore a simple white boutonniere and they stoically sat up front during the service. 

Watching her parents was probably the hardest.  She was their only child.  You could see their pain from a mile away.  The only way I know how to describe seeing that pain is gut-wrenching.

It was a lovely service that was well attended.  Beautiful songs were played and sung for her.   The priest did such a wonderful job-he was sincere, caring and even made us all smile a few times.

We drove in the funeral procession to the burial, the bright orange FUNERAL sticker in my front windshield-a glaring reminder of where we were headed.  We arrived at the funeral home where more words were shared and we all sang amazing grace.  The pall bearers one by one laid their gloves and boutonnieres on top of her white casket before they lifted her casket into a crypt.  We then went outside on a gorgeous day and watched as her family released balloons into the perfectly blue sky.  It was very touching.

In my sight line this entire time, was her Dad.  He was just so so broken.  Gut-wrenching-because everytime I looked at him I could picture my husband in his place-or any of the other Dads I know through Rett and it was almost like looking in a crystal ball.  Brutal.

I started working at Katie's Clinic in December.  Since then we have lost 2 of our girls-ages 11 and 20.  And its not ok.  But, it makes us work harder and plan more and watch more and do more.  Our girls are trapped in bodies that don't work.  And it is all just gut wrenching.