First Day

Each day provides challenges...joys...pains...frustrations...opportunities...

Lately they seem different. I feel angry when it's bedtime. I didn't get it done, anything done...

Tomorrow is the first day

the First Day of the rest of my life

it's gonna be alright.

That's Not Our Story

Over the past week, I've been pouring over blogs and stories of families of children diagnosed with CDLS. Each of them unique and touching....

It's impossible to control the stream of thoughts and feelings that pour through your mind,
your heart. It's hard not to let fear rule your vision of the future.

But I just remind myself....That's Not Our Story.

We have a story...

It started a long time ago...

One day, maybe, I'll be brave enough to tell it.

Identity Crisis

My pregnancy with Lily was hard...different from the others...from the very beginning. I remember the day someone suggested that I was having a hard time because I was having an identity crisis. Maybe, I was struggling with the my role-being a mom, a wife. Maybe my life wasn't what I thought it would be. She said, having an identity crisis was good, normal, part of accepting where we are and understanding ourselves.
I didn't need to look inside of my belly button to solve my identity crisis. I didn't bother to mention that I day-dreamed about being barefoot and pregnant when I was little. (Of course no one is barefoot and pregnant in Yorkshire.) I didn't bother to say your wrong. Sometimes I just let people believe what they want...even when their wrong.
Because the only identity crisis I can understand is the one I have every time I look at the cross. I just can't wrap my mind around that much love.
Yes, sometimes I think it could be called an identity crisis. But it has nothing to do with my babies...nothing to do with Brian. It has everything to do with my Lord. I just wonder what I did right that He would want to be identified with me.
But then, that is not a crisis, just a beautiful mystery.

Bitter-Sweet

Tuesday started like everyday. Rush....kids to school, pick up the sitter, race to the first appointment. Lily's follow-up. Wasn't suppose to be anything eventful.... Weigh-in again....anxiety hanging.... what would it be this time. 4 ounces..maybe more, hopefully more. Maybe she'd be 10lbs. That would be great. We'd celebrate. Yeah, maybe 10 lbs. I was running late as usual. Couldn't find parking. Finally, we get upstairs at the hospital. Breath...wait, read a bit of my book, stare at the wall. It's our turn, we get settled, sit down. I wait.....Yeah Lily's doing great. No new worries. "So," he says "we've heard back from Dr. Thompson, the geneticist."
It Stops...everything stops. Like that feelin when you forget for a minute what you came for in the first place. I wait....
"She believes that Elizabeth has a rare genetic syndrome." Elizabeth...who..oh right Lily. "It is called Cornelia de Lange Syndrome."
Silence
Wait...ok...what ...right..ok...they think they know what is going on.
"Cornelia de Lange...so tell me how is that sitting with you?"
Fine I say. Tears burning....wait....is that relief....no it can't be. I'm not relieved.
am I?
I wait for Him to say it again...and again. Can I remember the name. I need to....it is part of us now...it has been and I didn't realize.
Like that person you recognize.....you just don't know there name. But you know.

On the way home I play with it. On my tongue. Like candy, I say it...over and over. It starts to sound nice and I do feel relieved.
Then I remember that this is my baby. I want to spit it out, it's stuck on my tongue. It's sour...Cornelia de Lange...
But it's like coming home....
Like coming home to a messy house. It's yours...you recognize it. You dread it...but you know. It does feel right.
Maybe it is just the knowing.
It's....it's Bitter-sweet.