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.  

a letter to self

self- writing this to you.  writing this to help you get over this bump, out of this hole that you fell in,  away from this cycle that almost caught you up again.  writing this to remind you that you are strong, that you are full, that you are more than fear and tears.  reminding you that it is good to be real- that ‘fake it til you make it’ is all good and well and sometimes very, very necessary, but at times it’s better to be rough around the edges and less than pulled together- at times it’s ok to let others know that you are struggling and to accept the love, the shoulders and hugs and hand holding that you need to move forward.  

self- somethings you can’t change.  you know it.  you’ve known if for years- even before the fragile x, the diagnosis, possibly even before babies, before marriage, before maturity.  somethings simply are.  they are hard.  they are bumpy and lumpy and jagged.  they are not typical or what we expected, what we longed for, what we told ourselves we would have.  they are not, even after much work, what we hoped to achieve.  they might be this way for ever.  truth.

self- you know that somethings are so, so important, and you do these good things- you work to make other people happy- in the small and in the big, giving your smile in hopes of provoking one in return, listening, hugging, spending time, spending money, finding the good while acknowledging the bad- it’s ok to acknowledge that there’s bad and sad and heartbreaking for you too.  it’s ok.  it’s true.  

self- somethings you can change.  somethings you can do.  let’s make a list- lists make you happy.

1. be consistently nicer to your mother- she has been your rock, your motivation, your line by which your judge yourself and all other women.  just because she loves you and always will, just because she will forgive you for your smart mouth and eye rolling doesn’t mean you have to continue to do things that require her boundless love and forgiveness.  she has been a caretaker for your sweet gram, your ‘child care provider’ which is so much wrapped up into an efficient ball we couldn’t list it all if we tried for years, a faithful wife, an amazing mother, a continuously loving grandmother to ALL of her grandbabies.  she has shown you how to spend your time, focusing on the people in her life, teaching you ‘people before things’ over and over and over.  show her, self, you are thankful, show her and your daddy too, how much you love them, how much they mean to you.  

1. exercise- you know, truly, deep down, down, down, that this one thing can help keep you happier than 50 others combined.  that this helps with #1.  you know that it is not the number on the scale- though you look at it- that will keep you focused and motivated and feeling good about your body.  it’s the exercise.  it’s the sweat.  it’s the pushing past what used to be your max, feeling a muscle where there used to be just softness.  you know that ‘skinny’ will never be a word used to describe you, but that ‘healthy’ and ‘fit’ equal ‘balanced’ and ‘content’.  do it, self.  make it a priority.  do it with your babies, with your friends.  wake up earlier or go to sleep later.  once you start, it will make you feel good enough to grab on and keep going.  go.  do.  

1. remember what is most important.  your husband.  your babies.  your family.  it is not your job.  it is not the money in the bank.  it is not the new clothes, the shoes, the dresses - you like this, you always will... but it is not your priority.  time spent marks that which matters most.  time.  precious time.  

1. pray.  self- even after pain and hurt and heartbreak.  even after one. more. thing. that  brings you down to the lowest low, to the bottom of tears, to the sobs that seem to tear your soul in half.  pray.  look at what God has given you.  even if you can’t seem to look high enough to see the salvation, the love, the Son that was given for you- look at the beautiful stars in the inky black sky.  look at the continual waves, the greens and blues of the ocean.  look at the golden sandy silk of the corn drying in the fields. pay attention to the dark of the dirt- brown of so many layers that wrap up and around and give you trees and flowers and bugs and worms.  look at your babies- made in His image.  think about the heart the amazing veins and arteries- embrace the body that was given to you and what it can do- it held your amazing children for 9 months.  it held the baby you lost.  pray in gratitude for what you have.  pray in all earnestness for help to be who you want and need to be.  pray to draw closer.  

1. remember that you have a thankful heart.  even in the tears and and the blues, self, you could always find the silver lining.  it’s most likely what has compelled you to keep going.  to do.  to be.  to write this.  to remember that there are others who have greater burdens, to work to lighten their load.  to be amazed by the angels- those here on earth who are able to move mountains, those unseen who guide and aide and lift us up in miraculous ways. be thankful, self,  you have so much to be thankful for.  

a thank you, and you and you.

I love to read blogs- if you look to the right you'll see a list of my favorites.  I have a very hard time leaving a comment or reply.... especially for the posts I love the most.  The ones that make me smile.  The ones that make me cry.  The ones that make me so thankful that some one else seems to get what I'm feeling, and that they are able to put into words what I'm unable to write, even on my most eloquent days.  So thank you... thank you for continuing to write- something I've struggled with lately.  Thank you for posting pictures of happy and notes about your world.  thank you for the mundane and the amazing- the miracles and the heart aches.

Cheap Thrills #13- Gray Dress - Gap Outlet, $19.99 clearance + coupon, paper beads seed beads - $20.00, and flower for my hair- $8.99 at Bergners, on sale of course.  You can't see my feet- I'm wearing some cute black embellished sandals that cost $13.99 at Kmart- grand total= $62.97

Here's a little bit of silly for you- I just enjoyed a wonderful weekend with my Vandy girls at Rosemary Beach--- actually Inlet, Rosemary's less chi chi cousin, and I have some serious thoughts about bargains and self and life and love that came from time spent with my girls- but! Notice my sun burnt self- all with the exception of one swipe down my left arm??? Who knows- seriously, I put spf 30 on EVERYTHING... yet my left arm is the only uncrispy part of my entire body :-)  Tam, who used spf 70, and reapplied faithfully every hour or two, looks her gorgeous pale self. I'd love to tell you that it's faded evenly, but that would be false- I have an equally interesting rectangle across my throat and chest- maybe from where I held my book up to read on the beach??  oh well- it was amazing, and I loved it, and was so thankful to spend time with women who all have such trials and joys and lives filled ups and downs- I didn't have to explain every little bit- they know all my ugly, my heart aches, my happy.  thank you girls, thank you, thank you, thank you. xoxoxoxo 

might as well

as all italian/polish/irish/english/german/american indian women know- I'll most likely have a mustache when I'm older.

Funny, as my arms are pretty much hairless, that my upper lip has decided to sprout these tiny hairs that seem to turn darker by the day.

I promise not to let it go until I'm at least 80... but after that, I'm done.... I might even use a little vaseline to keep it nice and shiny and make sure all the hairs are in place....