Monday, June 25, 2012

hope, faith and knowing.

A little over 2 and a half years ago, soon after Avery was diagnosed, I had something like a vision.  I have told the story before but it bears repeating-especially now.  During those first few weeks and months I would sometimes wake out of a deep sleep and think "Avery has Rett syndrome?" I couldn't quite wrap my head around those words.  On one particular night that very thing happened just as I was drifting off to sleep.  And maybe it was that in between awake and asleep when I saw her.  I saw Avery in the future.  I saw her as a pre teen.  I saw her without Rett syndrome.

I cannot be sure what it was that made her "without Rett" but I just knew she was.  I just knew.

That moment has sort of subtly carried me for the past few years.  I have had so much hope for a future with no rett syndrome-or even less rett syndrome.  I have had faith that it would happen.

After this weekend I KNOW it WILL. 

This weekend I had the privilege of attending the 7th World Rett Syndrome Congress in New Orleans.  Im not sure it is possible to even convey what I felt while there. There was a lot of hugging and laughing and meeting and toasting and even a few birthday candles.  There were standing ovations and tears of joy.  There were other tears too...tears of regret or feeling like a failure-which quickly turned into being inspired to change things. There were more hugs and some drinks and lots of food.  There were moments when I felt unbelievably lucky and fortunate and loved and supported.  There were many "hey arent we facebook friends?" and "I love your blog!".  I got to see some moms that I rarely get to see and have only known for 2 years or so but it feels like it has been a lifetime.  We are all different but so connected by our girls. Nearly everywhere you went, you saw a Rett family.  Many many girls were in attendance and they were so loved on by everyone.  All highlights.

But the winning moments?

  • Celebrating my birthday on two nights with such special people.  Even though it is embarrassing it is kind of nice to be sung to!
  • Seeing Dr Percy get choked up as he was introduced and received a standing ovation. 
  • Meeting Larry Glass, CEO at Neuren Pharmaceuticals-and when I said Im so excited that maybe there is a treatment to help our girls and he stopped me and said: "not MAYBE, When."
  • Hearing that the 2nd phase of the igf1 trial is approved and funded.
  • Hearing that the trial of NNZ-2566 (Neuren's drug to treat mild traumatic brain injury) has been approved and funded.
  • Seeing Dr Huda Zoghbi (she discovered that Rett is on the mecp2 gene) get choked up when she received a standing ovation and knowing that she wants this cure as badly as we do and that she is so capable of finding it.
  • Hearing mom Mickie Mc Cool share her story of getting her daughter fully included in her school-it was so inspiring, 
  • Meeting new moms that are already seeing the silver linings that come with Rett syndrome and seeing myself in them and feeling my heart heal a little more.
  • Hearing Steven Kaminsky close the conference with this gem:
"my pledge to you, it will be done fast"
I can't even begin to describe what it means for that vision of Avery without Rett (or with less Rett) to get clearer.  Avery is pumped.

Wednesday, June 20, 2012

that dreaded tightrope

Im walking it again. That dreaded tightrope. Here I sit, after doing piles of laundry, crossing off lists and beginning to pack. Im packing for New Orleans.  Tomorrow I leave for the 7th World Rett Syndrome Congress-which happens only every four years and this year is to coincide with the IRSF Family Conference (which is annual-this will be my third).  It is something I have looked forward to every year since our diagnosis.

This means I get to see so many people I never see in real life-or only once a year. It means I get to meet moms and dads I only know from cyperspace. It means I get to sit in the same rooms as the most well known and well versed researchers, scientists and physicians.  It means I will be surrounded with understanding and love and support. It means I will cry and laugh and give out numerous hugs.  It means I will learn a lot and feel a renewed hope.

It also means that my daughter has Rett syndrome.

Im so excited to get to attend.  I just wish I didnt have to.  Im lucky that I will be participating as both a representative of Katie's Clinic and IRSF.  But I still kind of wish I didnt know what either of those were.  If I think about it too much, I cry.  But then I think how wonderful it will be and I smile.

So here I am on that tightrope, trying not to fall one way or the other....

Wednesday, June 13, 2012

it has been one of those days where the tears come much too easily.  for everything all at once and nothing really in particular. 
maybe it is my approaching birthday which brings to mind happier times...
maybe it is summer which stirs up visions of easier days...
maybe it is the lingering feeling of general nostalgia that has been hanging over me for the past couple weeks since my last post.  i downloaded the entire Pretty in Pink soundtrack and man, I was off.
yeah I think that is it.
nostalgia. those dreamy visions of the good old days-when we were young and dumb and...young.
some say nostalgia is a necessary evil, some say it doesn't do you any good. 

“...And nostalgia is a cancer. Nostalgia will fill your heart up with tumors..."
Sherman Alexie, Ten Little Indians

“Any time gone by was better.”
Jorge Manrique 

 “Nostalgia is inevitably a yearning for a past that never existed.”
John Green

it's a complicated feeling-a mix of melancholy, longing, and a wistful smile. but truly you are remembering the past with just the good parts. and we all know life is not just good parts. it can't be.

“Memory believes before knowing remembers."
 ― William Faulkner, Light in August

“There are no days more full than those we go back to.”
Colum McCann, Zoli

“The 'what should be' never did exist, but people keep trying to live up to it. There is no 'what should be,' there is only what is.”
Lenny Bruce 
Eddie Vedder summed it up like this when asked last year about all the 90's music nostalgia going on around the 20th anniversary of their album Ten:  

"I feel like we have to keep our eyes on the road. Being nostalgic is like taking an offramp and getting a sandwich... I don't want to be spending the rest of my life at the gas station."

I agree with Eddie to a point. We don't want to spend the rest of our lives at the gas station, but those memories can be fuel for our trip.  We have to stop every now and again to gas up, grab a snack and maybe hit the ladies room.  It can be annoying, when you are so focused on the destination.  But life is the journey, not the destination-right?  And that journey brings bumps in the road, accidents and many stops on memory lane.  You can't stay there long anyway, because there are places to go. 

There, I think Im back on the highway.