just when I was getting ready to write a blog about NOT SHOPPING any more, I find this jacket .... haven't ordered it yet. focus. focus. focus.  think Christmas, Birthdays, Vacations.... focus. focus. focus.

slowly....

What I want my hair to look like....

an unfortunate truth.

slowly, slowly, getting back to it (writing about this thing called life).  but not the hair.... it's way too far down the priority list.  

Happy Halloween, peeps.  

Change

5 minute Friday on Change...

You know what I can change?  me.  my attitude.  my inside.  my prayer.  my hope.  my dream.  I'm working on it... God is working on me.


 I love them too much to worry and cry because I can't change them.  I love them too much to wish away even one more day because of a mutated gene or whatever unknown we battle... i need to change my focus, change my vision.

I pray for change of heart, my own, the worlds, to see the value and amazement that is bundled up in each and every single little fiber of their being.  I pray for God's vision to focus more on what he desires for me, what he wants my life to be, what he has in store for us.

I will change.  Life is too short and time is too precious to stay the same.  God will change me.  

I am listening.  I am ready.  I will change.  

xo

edit... an amazing revision

so... I was  amazingly happy to report that 40 people had worn green and posted on my timeline... tonight I went back to look at the pictures. HELLO!!! 176 PEOPLE wore green and posted pictures-I was just 136 shy :-)

Soon I'll be ready to tell you all about Miami- the 13th International Fragile X Conference, and Michigan- a week at the  Lake.  For right now I'm happy to be sleeping in my own bed,  cooking in my own kitchen, making lists in my beat-up notebooks and drinking water from my faucet that doesn't taste like metal fish or putrid eggs!!   ahhhhhh..... no place like home.

And... I'd love to tell you I have a picture of all 3 children smiling and looking at the camera... but that'd be a big fat lie.  I think the one above is just about as good as it's gonna get ;-)
xoxo

love overflowing

These boys... Here I thought I was cuddling two sleeping sugars... right up until B took the picture :-)  We had an amazing National Fragile X Awareness Day... I think I had over 40 friends and family members  wear green and send/post a picture, think of Abraham, and demonstrate unbelievable support and love for our family and so many others who live a life affected by Fragile X! I can't thank you enough!!! 

And now I'm getting ready to leave TOMORROW for Miami- the 13th international Fragile X Convention... and I'm panicking.  I hate, hate, hate to leave my babies.  I know it will be amazing. I can't wait to see my friends, to meet people I've only seen online.... what if i don't recognize them without their maiden name and profile pick?!? ;-) I'll be the one with the print out of pictures, names, children's ages and activities.... nerd much??? yes :-) 

Baby Girl is getting so big, and she shares her momma's love of shoes.  Sometimes I look at my babies and my heart hurts with such intense love and longing for them to be happy, safe, and healthy.... It's a prayer I pray over and over and over, though if I'm honest, I ask our heavenly Father for their safety first.  whooooooooshhhhhhhh. breathe in, breathe out.  

they'll be fine.  I'll be fine.  

Have been thinking on this.  Praying about it.  Working hard on living a thankful life because of, not in spite of, the direction God has led me.  

xo

Fragile X Awareness Day 2012- what it's all about!

It's all about repeats.  It's about protein, methylation, and biochemistry that starts at conception and continues until the last breath is drawn.  It's connective tissue, gross motor, fine motor, muscle tone, speech, language, cognition, sensory processing, and anxiety.

Fragile X syndrome is the leading cause of inherited mental impairment.  FX is the leading known genetic cause of Autism.

Some days it seems like this-
It's about potty training at the age of 6 and amazing the doctors  because we have that when there is so much that we don't have.  It's about having no words, not even a true consonant at the age of 7.  It's about moving... constantly rocking and flapping and humming and spinning.    It's about 5 correct physical answers on a cognitive battery with over 300 questions.  It's about smells and textures and tastes and having days, weeks when cheerios and popcorn and crackers are the only things that are consumed.  It's about no sleep.  none.   It's about wanting to play, wanting to be involved, wanting to connect... and not having the words, the physical ability, the social know how to do it.  It's about no crowds, no buzzers, no bands.  It's about the never ending medication carousel.  It's about fear and stress and anxiety and pinching hands and tears... silent tears.

But you know what?  I'm learning.  Now, more and more, it's about this-
It's about the ability to try and try again and again and again and again, because failure is just a word that we don't believe in.  It's about falling and getting up over and over and over because life is not lived on the ground, down and out, it's lived snuggled tight and laughed out loud and tickled and prayed and storied.  It's about music, favorite songs to dance to, high in your daddy's arms . It's about kisses and hugs and finally, finally, finally a sweet kiss on your momma's lips.  It's about pats and games and chasing the dog.  It's about high fives and friends that know you and LOVE  you.  It's about buttons to talk and pictures to show.  It's about joy, row boat, water time and sweet smiles with your Grams and Grandpas. It's about wrestling and teasing your little brother.  It's about kissing your baby sister, and tolerating her kissing you too! It's about life, this life, right NOW.  THIS IS IT.  It's about taking what we can do, pushing the limits, rejoicing in success! It's about hope for the future!  It's about plans, dreams, and never ever, ever, ever, ever giving up.

It's about us.... all of us.  Our world, knowing and accepting, assisting and respecting.  It's about understanding and peace and including people of all abilities at all times in all things.

Tomorrow, July 22, 2012, is National Fragile X Awareness day.  Wear your green, tell someone about Fragile X, Remember Abraham and the thousands of other people who live a life affected by Fragile X.     Promise to include instead of ignore, to accept instead of criticize.  Promise to respect and to love.

peace.

Holding On

My uncle , Charles Maslan, passed away on Tuesday night.   The Saturday before, when I was up in Chicago, my auntie Dor, his wife, told me to pray for him to go.  She told me that very morning, when she was sitting in the chair beside his bed, her chair, where she's probably spent 90% of her time in the last months, that my Uncle Chuck had reached his hand out to her, and had pursed his lips for a kiss.  He did this with my cousins Di, and Doreen, his daughters.  He reached out to my Auntie Dor and he held on.  She kissed him, told him she loved him, told him it was ok to let go. Told him that his Mom and Dad were waiting, that she would be o.k.

He had let go of so much- dementia is a thief of such awful talent, whether you want to or not, you end up    holding onto skin and bones and letting go of cognition, remembrance, and self.  The soul has left, the Man that will always be my uncle was gone years ago.  

The end of life is not pretty, it's not romantic, it's not as easy as the movies make it seem.  His tailbone had worn through the skin on his back.  Do I really understand that?  Do you?  

He reached out to the one that had been there for over 60 years, by his side, through every up and down imaginable, and he held on.  

We lost a friend at the age of 32 from esophageal cancer- an amazing man.  A devoted husband, a loving father, a lawyer, a man who had never met a stranger, who was always, always, willing to help anyone in need.  From diagnosis to death, he had 6 months.  I remember sitting in the hospital room with his wife, family, friends. She told me that Dom had let go of his job easily- a job they both had worked so hard for, a job he loved.  She told me, as the end drew near,  she thought he had finally let go of the kids- a sweet, beautiful toddler with eyes and hair just like her daddies, and a precious son who would be born a week after his death. He was still holding on, she said, to her.  When we visited Dom, she was always touching his restless hands, stroking his forehead, hugging.... holding on.  

How could he not hold on to her?  to the girl he'd fallen in love with in high school, the bubbly, smart mouthed, compassionate woman who had stood by him when he got kicked out of college, stood by him as he worked his way  through law school, the woman who had stood beside him 5 short years before and vowed to love, honor, and cherish him in sickness and in health? holding on.  

I wrote about sweet Carter, and his momma does too.  She writes in her latest post about mother's day- her first one, and that her sweet baby is in heaven instead of here on earth to celebrate with her.  Have you had a precious baby reach out and hold on tight to your finger? you think, in your momma heart, that you will hold that little hand forever.  I imagine, in the time between when Carter stopped breathing and when he went to Heaven, that his momma and daddy held onto him in any way possible, hugging, kissing, touching that soft baby skin, brushing his crazy hair.  holding on.  

I remember my grampsy.  I remember visiting him in the nursing home as he struggled and fought through what we now know was FXTAS .  I remember kissing and kissing his head, his cheek, as he mumbled and hummed.  I remember rubbing lotion on his hands, his neck.  finding something I could do for him, anything to show him that i loved him.   holding on.

I remember my Gram in Chicago- holding her hand as she hummed and again when the stroke had taken all speech from her, holding her rosary with her, kissing her cheeks.  Breathing in and holding the talcum powder smell that was uniquely hers, even then.  holding on.  

I remember my Gram down south, sneaking her chocolate covered cherries, brushing and fixing her hair, singing to her.  Telling her memories of her front porch swing, fresh tomatoes and fried okra.  holding on.  

And then...then we let go. Our bodies weren't made to last forever, and sometimes, even when we think we have years and years  together, time and chance happen and our future changes shape.  So... so today I am thankful for all of those who have held on to me, thankful for all of those who I hold so tightly to.  Thankful to know that even when our grip relaxes and our soul lets go of the body it's  carried around, that we can hold on to our heavenly Father's hand, because even now, He is here, holding on to us.