rettsyndrome.org

Image Map

Monday, November 22, 2010

Cut!



Before.....

and AFTER!

and AFTER!
I have been wanting to do this for awhile. Avery's hair is REALLY long. WEll, was. I wanted to wait till it was long enough to donate and then kept putting it off. and for some reason tonight was the night. lucky for me her hair is curly enough to not show the crookedness and still needs a little tweaking. we will see what happens in the morning.

thankful 2010

not feeling particularly thankful today...but figured I should get in print what I am thankful for. so, in no particular order:
lip balm
music that either makes me want to sing out loud or cry or both
pharmaceuticals (for me and for kids)
sunny days
family
well written TV
gym memberships
pedicures
naptime
time to read
people who are amazingly generous and thoughtful and that i get to call people like that friends
open minds
honesty
easy trips to the grocery store with both kids
drive thru pharmacies (and banks and coffee shops)
laughter
reliable and experienced babysitters
my new rett family
good memories
bad memories that made me stronger
my family-immediate, extended, and by marriage
our fantastic friends and acquaintances
dvr
blogging
people who read my blog
love

i guess that is it for now. surely i will come up with some more to add to the list after this long week of no school!






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.



76129_10150309696915263_534755262_15729323_1876462_n.jpg

Tuesday, November 2, 2010

A wonderfully wise woman, who is also the mother of one of my oldest friends posted the following in response to my latest post about clarity. It is from Khalil Gibrans The Prophet. Enjoy. I did.

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Thanks Regina for being there for me when my own mom cannot. xxoo

halloween


Monday, November 1, 2010

clarity-not always a good thing

so my good friend colleen got me into Mumford and Sons (an awesome English band). I had already heard one of their songs on the radio and loved it, but after she saw them live I had to buy the album for my ipod. one of the songs, thistle and weeds, is really good. here are the lyrics:

Spare me your judgements and spare me your dreams
Cause recently mine have been tearing my seams
I sit alone in this winter clarity which clouds my mind
Alone in the wind and the rain you left me
It's getting dark darling, too dark to see
And I'm on my knees, and your faith in shreds, it seems

Corrupted by the simple sniff of riches blown
I know you have felt much more love than you've shown
And I'm on my knees and the water creeps to my chest

But plant your hope with good seeds
Don't cover yourself with thistle and weeds
Rain down, rain down on me
Look over your hills and be still
The sky above us shoots to kill
Rain down, rain down on me

But I will hold on
I will hold on hope

I begged you to hear me, there's more than flesh and bones
Let the dead bury the dead, they will come out in droves
But take the spade from my hands and fill in the holes you've made

But plant your hope with good seeds
Don't cover yourself with thistle and weeds
Rain down, rain down on me

its a great song. just the right mix of melancholy and hope.

the line that caught my attention was "i sit alone in this winter, clarity which clouds my mind".

now i know that we all have different interpretations of music and I am still trying to figure out exactly what this one means but it definitely got me thinking. Clarity. I think we all strive for it.We want to be able to see the the important things in life. We want to be clear about what it is that makes us happy, what is important. But I think that sometimes you can have too much clarity and it can mess you up. cloud your mind.

I discussed this with some other rett moms on friday night. I didnt articulate it very well and Im not so sure that I will here either-but I feel like I might be too clear. in some ways this is good like when I dont take for granted even the smallest milestone that Nolan reaches or when I see Avery achieve something she has worked so hard for. But clarity also means seeing children Avery's age (or younger) and being reminded of just what she is missing out on. Knowing all the things she could and should be doing-really seeing those dreams and hopes dashed. Im real clear on that. Too clear.

I dont want this to turn into a negative nelly post. Not at all. But it's true that life is like this-you can't get the good without the bad. The same holds true for having perspective-the perspective that comes with having a child with special needs. Because I can appreciate the beauty in the little things more than I could before, I am also susceptible to being hit harder with the harsh realities of it.

On Saturday night while enjoying a wonderful evening with great friends, I locked eyes with the cutest little 9 or 10 month old baby girl. She was at the next table in her high chair, bow on her head and the sweetest smile on her face. It reminded me so much of Avery when she was that age. Except she was waving. Looking right at me, with her sparkly eyes and darling smile-WAVING. It was all I could do to not cry.

That morning was particularly difficult with Avery. Lots of tears from her-and me too. some days are just like that. I went out to the city with puffy eyes to meet our good friends for a fun night out on the town. And it was just that. We had a blast. I needed it.

Then it was Halloween. We stretched out our night away as long as possible then went to get the kiddos. And as usual, we see Avery and she is sweet and calm. But, within minutes of my arrival she is back to her old self. Anxious, irritated, frustrated, screaming. It is hard not to take it personally. But I know she is picking up on my impatience and my guilt and frustration.
I was really anxious for the Halloween party we had that evening. My thoughts vacillating between wanting to bring her and try it out and wanting to let her stay with gramma. It all came to a head when she was crying for waht seemed like no reason and I lost it. I went in my room and screamed and cried and punched my pillows. hard. And old fashioned tantrum. sometimes that helps.

I couldnt bear to not bring her so we did. Gramma graciously offered to be a back up plan in case things didnt go well. We had her Step by Step recorded with "trick or treat" and took her to the party. she did well for the first 30-45 minutes but then wouldnt eat her dinner and started with the screaming and knocking things over. Before it escalated (and well before trick or treating) I quietly took her to grammas.

our friends are all so awesome and totally embrace her and her quirks. they talk to her like they talk to their own kids. they have been there since she was born and long before that too. so that helps. but i cant tell you how hard it is to not be able to take your first born child trick or treating at age 4. We took Nolan and he loved it. He carried his treat bag the whole way and said trick or treat and thank you at every house. He even went inside some houses. All the kids were so cute, so excited, so sweet and I loved being there to see it. But it also made me ache inside. my heart ACHES for it to be that way for my daughter. for our family. But it is not. and that is clear. There is that damn clarity again.

I guess what Im trying to say is that while I have all this wonderful perspective that I am thankful for, it can get clouded by the clarity of the big picture. does this even make sense? who knows.