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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.

8 comments:

Dawn said...

It makes a lot of sense and I concur. Life is a lot easier for me when I live inside our bubble and the only clarity that I see are the day to day accomplishments. Of course, if it is a bad day, that can be the worse thing! But, the way clarity hits me in the face when we go to the park is painful, hurts me to the core.

regina said...

It makes total sense, Erica. You look at your daughter and you want so much for her. You are truly a gift to Avery and, with all the challenges that Avery brings to you, she is also a gift. You are growing and gaining a perspective on the paradox of life that I wish everyone could have - as you say " 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." It heightens the strength and compassion that is an integral part of who you are.

Your blog reminded me of one of my favorite passages from Kahlil Gibran in the Prophet:

"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. "

much love and a big hug -

mj said...

i know you can't tell, but i'm hugging you right now.

Colleen said...

I am honored, and I am hugging you too!

The MacDonald Family said...

It makes total sense to me too and I'm in on the group hug!!!

Ann Marie said...

I'm hugging you, too.

Sheri Marie said...

Oh baby girl....I wish I was there.....I love you to death...

Zhanna said...

I really love this post. Thanks for sharing it. I'm embarrassed to say this since I work in technology but how do I "follow" your blog? Zhanna