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Tuesday, November 9, 2010

anniversary of "that day"

(taken on 11~13~09)

today is the day. one year anniversary of the official diagnosis of rett syndrome. and, it's just a plain old tuesday. a tuesday with lots of love, that is. I got some facebook love and text love and even got flowers from my awesome brother in Virginia. Avery's incredible teacher called me to check in and told me she was thinking of me today and values me and avery and that we are in her heart and mind daily. how nice is that? it was what made me cry. but just for a second.

my facebook status today was this: one year ago today we closed one book and opened another. this book has been filled with answers as well as new fears. best part of the book is the family that comes with it. we couldn't do it without them.

And thats really how I feel. We just stepped off the path of the unknown and onto the Rett path. Who could have guessed it would have been lined with such fantastic people. And I know that seems cliche (all silver lining and blah blah blah) and maybe it is, but these people are my life line and they ARE fantastic. Being on the Rett path or in the Rett book, or the crappy club-whatever you want to call it-STINKS. It's unfair and frustrating and sad and makes me so angry. And we have it pretty easy so far. But we have all these hands surrounding us from our family to friends to our Rett family and none of them will let us fall.

I know it could seem like a cop out to say that getting the diagnosis was a relief but it was. But with that relief there were crushed dreams. It also put a big fat period on the end of a sentence, so to speak. We had always hoped Avery would "grow out of" her delays. Getting a diagosis of Rett meant that was no longer a possibility. But we have new hopes-the hope for Avery to maintain her skills, the hope of a CURE. I have dreams of Avery on the first day of her freshman year in college. She is in the common area of her dorm floor sitting in a circle with all her dorm-mates and the RA. They are going around introducing themselves and saying one interesting thing about them. Avery says: "Im Avery Robertson, Im from CA and when I was little I had a disorder called Rett syndrome. It caused all kinds of problems. Scientists found the cure for it in 2016 when I was 10."
How cool would that be?

A lot has happened in this past year. Some very proud moments and some not so much. I lose my patience more often than I care to admit. Thoughts cross my mind that no parent should ever think. But the good moments definitely stand out in the crowd. Every day I wonder "how the hell did we get here?" or "why is this our life?" and I realize it's a pretty darn good life. Even though I feel like crying through most of it! Where do I get the 'most likely to not cry because its not socially acceptable in most situations' award?

So here is to all of you. you all know who you are. you are thoughtful and sweet and giving and generous and let me cry when I need to and make me laugh when I want to cry. Slowly but surely I am becoming a better person, wife and mom. and Avery thanks you for that.



Carrie and Avery said...

Erica, that college made me cry! Happy D day---I hate that rett brought us together BUT am so proud to be a part of your life and call you my friend and sister for life.

Colleen said...

Well said my friend. I am very proud of you, as well as proud to stand beside you in this.

Ann Marie said...

This has me thinking.....When our girls are older, they will all be friends because they will have this amazing thing in common. Who else would understand what it will be like for them to get a cure? Of course... that will mean we will all have another excuse to plan trips for them to get together, right?

You're such an amazing mom and I'm so happy to have you as a friend.

Dawn said...

Very insightful, Erica! I love your perspective and am happy to know you on this journey.

Lauren Gallo said...

My hopes and prayers are yours my Love.

Catriona said...

Erica, you are a star. I'm 'glad' that Rett has brought us distantly together!

mj said...

beautiful. glad it was a great day full of positive perspective. can't wait for leah, aves and all their rett friends to go on a rett-away and chat about their past lives. :)

Lynn said...

We just had our 5 year autism anniversary. I love your college dorm dream...oh God I dream that every day. We can never stop hoping. Thank you for finding my blog and putting me in your blog roll...I really appreciate it.

Erica said...

thanks so much everyone! xxoo

regina said...

Erica, I've been thinking of you and Avery so much and I find it difficult to put thoughts into words after reading your "anniversary" blog. Hope, unconditional love, and unwavering belief in Avery - for who she is and what she is capable of, even with limitations - gives both you and Avery a bond of stamina and strength to get through the really tough days and savor the sweet moments. Your response to this new path is so touchingly honest and grounded in perseverance and awareness. I keep seeing in my mind's eye you and Carrie dressed up - gorgeous and glamourous - for your first prom, standing out in front of our house in Middle Plantation - all that beauty and youth has evolved into two amazingly strong women - it just fills my heart.