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.


Anonymous said...

I had a vision too!!!!!! Oh my goodness Erica!! I have been stumped about what to write today but now I know...and I'm going to send people here so we can either back each other up or both look bonkers! I wish I'd been at the conference...that you for writing about it so well that in a small way I feel like I was :)

Erica said...

you did? a vague but compelling vision? love it and cannot wait to read about it! I wish you had been there too and am glad I could make you feel a bit like you were! have you seen Janie's slideshow yet? fantastic!

Carrie said...

Beautiful writing! Thank you for sharing. I wish I had been able to attend, but with a 8 month old and 3 year old, it was cost prohibitive. I WILL be at the next conference! Lots of love and look forward to meeting you!