rettsyndrome.org

Image Map

Friday, May 25, 2012

wouldn't it be good

I have a new friend.
(you will want to be her friend too when you read that clever blog of hers)

Go ahead and check it out.  Read every post.  I'll wait.

See? Clever.

So today when I heard an old old song on my way to work and I immediately burst into tears, I tweeted her to see if it was ok if I attempted to do what she does so well.  She said it was-so here goes.

Remember Pretty In Pink? One of the classic 80's movies we have all seen so many times--it ranks way up there on my all time fave list.  I think I can recite each and every line.  And the soundtrack-oh the soundtrack.  How it takes me back. I remember even at that young age just being heartbroken for Duckie when we see him dejected and rejected in his room-mattress on the floor, spray painted walls. Remember the song that was playing?  It was Nik Kershaw's Wouldn't It Be Good covered by Danny Hutton Hitters. You can see/hear the original (and much better) version HERE.

This is the song I heard just as I passed through the tunnel on my way to work.  I heard the first few notes and turned it up.  Then turned it up again. Then the tears just started flying. 


I got it bad, you don't know how bad I got it
You got it easy, you don't know when you've got it good
It's getting harder, just keeping life and soul together
I'm sick of fighting, even though I know I should


The cold is biting
Through each and every nerve and fiber
My broken spirit is frozen to the core
I don't want to be here no more

Wouldn't it be good to be in your shoes
Even if it was for just one day
And wouldn't it be good
If we could wish ourselves away




And I think I was crying because I have been feeling this way recently.  I guess for the past 2 years or so really.  We have to fight for a lot, and too often I hear complaints from those that have really nothing to complain about.  And I think I was crying for feeling like that because it is just a shitty way to feel. And I think I was crying because as much as I want to say "i have it worse than you", I can also say " i have it way better than many". But even with that realization, I still have moments when I wish I was living someone elses life and not this one.  I hate even typing that.  I do.  But it is just the truth.  And as they say-the truth hurts-even ourselves sometimes.

I try so hard to push through life and keep a smile, but sometimes it seems my spirit has in fact been broken and is frozen to the core.  I look at people and literally think about how much easier their life must be...I know it does no good.  I know I have NO IDEA what these people deal with in their own lives-but when I see a mom with her three kids in a store I cant help but think "why isnt that me?" Actually my first thought is usually "who brings their kids to this store?" and then I realize she did it most likely because she CAN.






The heat is stifling
Burning me up from the inside
The sweat is coming through each and every pore

I don't want to be here no more
I don't want to be here no more
I don't want to be here no more






No, I don't want to disappear.  I just want a life free of Rett. I want the life I thought I would have.  The simple, normal regular life that many of our friends have. Again, I dont know what goes on behind closed doors.  I dont have a clue.  But it has to be better than having your normal daughter stolen from you by Rett syndrome. Watching her as she loses her skills? loses her words? having to do everything for your nearly 6 year old little girl? it breaks your heart every day.

And wouldn't it be good
If we could wish ourselves away



I know Im starting to sound like a petulant child screaming NO FAIR! I totally realize this.  I know that many many people could hear this same song and think they might want to live in my shoes for a day.  And it would be easier than their life.  And it would be fun and good and full of love and laughs.  It would.  My life is a wonderful life.  But Im always wondering, wishing, dreaming-would it be better if Avery didnt have rett syndrome?

Sure it would.  But I wouldn't know I had it so good.

 

Sunday, May 20, 2012

mad

Yesterday, I was mad (really Im mad everyday, but yesterday I was just more aware of it).  Even though I had a great day--I got to work out (ran 4 miles without dying) and then got to hang at the pool with a good friend, her kids and Nolan.  Red was home with Avery.  And that makes me mad. Not even really sad so much anymore, just mad. 
Avery is too much for the kids club staff to handle at the gym, so she misses out on that.
Avery is too loud and too overwhelmed at this busy pool, so she misses out on that.
And while I was happy to spend some quality time with Nolan and we had a blast, I was still bummed pretty much the rest of the day because Avery couldnt be there.
Im mad that Avery has Rett syndrome and I cant just take her anywhere I want, anytime I want. There is always arranging that has to be done.  Always.  Im mad that I get a pit in my stomach anytime we are invited somewhere-with the kids.  (which Im starting to realize is happening less and less-getting invited, I mean).
Im so mad that she has Rett syndrome and no matter how much we try, she just will not have a typical life.  Im just mad.

And the sunburn didnt help.

Wednesday, May 16, 2012

goosebumps

I got goosebumps a couple times last night.  And at least twice today.
Because of this news:
Pursuing the first Investigational New Drug (IND) for Rett syndrome:
Neuren Pharmaceuticals announces a program to the FDA
about a proposed Rett syndrome clinical trial.

Umm, yeah. Another possible clinical trial. It is kind of huge.  Gigantic.

Last night I attended the Samantha Corpus Golf Tournament dinner at a local country club thanks to a great friend.   A wonderful family in the area has been hosting this tournament for the past 7 years and have raised over a million dollars for IRSF. That is huge in and of itself. Huge.

Among some other very important people in attendance was non other than the new CSO for IRSF, Dr Steven Kaminsky.  He was there, in person to speak to the crowd-all the way from Maryland.  Whoa.  Also there, Barry Rinehart-he is currently on the Board of Trustees at IRSF and just happens to be the writer and director of the Silent Angels Documentary from 1999.  Very cool. If you havent seen it, you must. 

I was lucky enough to be introduced to these gentlemen and get to talk with them prior to the dinner.  Hearing Dr Kaminsky explain his thoughts on tackling Rett was thrilling-it gave me goosebumps. 

It is always thrilling to meet smart people-but it is a whole other kind of thrill when those people have no familial connection to Rett and are excited about figuring out a way to get this thing cured.  It blows my mind.  Really.

So, we got to sit with Dr Kaminsky and Mr Rinehart.  Dr Kaminsky spoke to the crowd.  He mentioned the above announcement-and we knew we were the first public crowd to hear anything about it.  goosebumps. He has a way of connecting to the crowd and making it interesting and understandable.  Basically, he told us this new drug has been used to treat mild traumatic brain injury and when used on rett mice-it reversed some of their symptoms.  You can read more about it HERE.  goosebumps.

The thought that there is currently a clinical HUMAN trial going on now and one more in the works for Rett syndrome is just mind blowing.  It has me laughing and crying at the same time. 

Some might ask: will it work for my daughter?  will it happen in time to help my daughter?  Sure, I am curious about both-but you know what?  It doesnt matter to me at this point. Really. Sure, I would love for this to be the "magic bullet" or part of a cocktail of medicines I could give to my daughter to make her able to lead a more typical life ( and it may very well be!)-but for now Im just so thrilled that the possibilities keep coming.  so do the goosebumps.

Thursday, May 3, 2012

taking it down a notch (or 13.1)

I''m officially "training".  I "ran" 3.1 miles on Monday AND Tuesday. And my quads dont hate me.  Because Im reading a great book called Marathoning for Mortals.  Im taking it slow and trying to do it right.  Yesterday was my "active rest" day so I went to the outlets.  That is, in fact, a real workout, you know.
Today was cross training day so I hit the stationary bike.  Feeling good.  Tomorrow is running/form and then my endurance run on Saturday.  Too bad Ill miss Saturday.  Ill be getting pampered and drinking wine instead.  Hey, I said I was starting slow. Ill do it Sunday. Promise.
Don't worry, Im not yet training for the marathon-that big famous one in Boston.  Im training for a HALF marathon in Healdsburg on 10/27.  13.1 miles I know I can do.  Then Ill have about 6 more months to get ready for the big day (if it all works out and I get a bib, and pay the entrance fee and raise the $5000 I must raise to run for charity).  I plan for that all to work out though.
If you have a helpful tip for me, leave it in the comments.  Im super pumped about having a goal!