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.  

12 Days- Day 11.

peeps  - right now all I can think about is this sweet little buddy Grant and his family.  He's 5 months old.  battling cancer... getting ready to leave his momma and daddy and sister and fly up, up, up to our Heavenly Father's arms.  Getting ready to roll without a pic line or port, ready to jabber and smile without an NG tube.  Lift him up in prayer.  Ask for God's peace and comfort for his family.

When you (I) start to whine or complain- SHUT UP. be thankful.  I'm not saying whatever it is you're going through is easy.  I'm not playing the pain game and I'm not comparing and contrasting scars and tears and pits that we've fallen into and crawled out of.  find something.  find one thing to be thankful for.  Remember that there is a momma out there who is Holding On, there is a daddy focusing on one day, one hour, one minute with his little buddy.

This is the back of our Euchre Tournament shirt-  I focus on the words- 'Life does not have to be Perfect to be WONDERFUL'... and Thank You.... find a little wonderful today.  Find a Thank you. Take your empty places and fill them with thanksgiving.

  

1. Today was Aquatic Physical therapy for Aurelia- and that was my workout.  We did fishy in the water and ring around the rosie and beach ball tag.  She loves it.  There are two inter-tubes on the wall, two big black O's... Aur says 'o, o- UUUUUU' - thanks to Word World we know that two O's make an UUUU :-)  we splash the water and say POOL!!! UUUUUU!!!  NOODLE!!!! UUUUUU!!! There's a senior citizen's water aerobics class right after the Therapeutic Class - Grandmas and Grandpas abound, and they repeat Aur's excited words and send waves of love and encouragement to all the differently abled swimmers.

Thanks to Picture Perfect Designs for the above photo.  

these pictures were taken exactly 1 year ago today.  Cherish your time here. Hold tight to the ones you love. 

2. I'm thankful for my subwoofer.  I'm amazed my car is still in one piece... somedays I turn the radio up so loud I think it may explode from the bass.  I turn it up loud enough so that my heart has no choice but to beat in time .    This, turn it up and listen.  Not what I typically boom, but I believe it may have been these Drum Corps International shows that first instilled the love of the beat in me- this is just a stand still- you can find a moving clip  with little effort, but the sound.... oo!!! love it. 

3.  Outfit.  

look! It's a picture- from now!! I love my jean jacket- from Gap, 11 years ago- bought it to wear to our first wedding shower... wowza :-)  Black and White sleeveless top- Gap outlet this summer. Black column skirt from Target.  Silver flipflops post swimming.   Dog peeking out from behind me, for sure! More pumpkins than you can shake a stick at? yes and yes again.  

in the hallway... keeping busy

too tired for much tonight- 

http://www.change.org/petitions/sponsor-arbaclofen-stx-209-study-for-children-with-autism-and-fragile-x

Because this is how we ride the merry go round.  

together.

over 1000 signatures in less than 24 hours- whether this is the drug for Abe or not... it is a miracle pill for many.  Please read my friend Holly's post below.

3 1/2 years... When a drug trial ends...

3 1/2 years ago really wasn't all that long ago, yet it feels like a life time.

3 1/2 years ago, Parker (who has Fragile X Syndrome) was 10 1/2. 

3 1/2 years ago Parker could barely talk.

3 1/2 years ago Parker left massive bruises on my body daily.

3 1/2 years ago Parker could rarely make it through a day of school without a complete meltdown.

3 1/2 years ago Parker couldn't go to the movi
es.
3 1/2 years ago Parker couldn't go to the pool.

3 1/2 years ago Parker couldn't tell me about his day, his wants, his needs.

3 1/2 years ago Parker couldn't tell me he loved me.

3 1/2 years ago, I took a chance. I enrolled Parker in a drug trial by Seaside Therapeutics. A drug called STX209, later to be named "Arbaclofen"

While it may seem easy to make the decision to put Parker into a drug trial he clearly qualified for, it wasn't. It's scary as hell to make that decision. With this one, the decision was made a little easier because this drug was a tweaked drug of Baclofen, something that had been on the market for years. I knew the long term side effects. I knew, long and short term, it would not hurt him. So, we did it.

Every 2 weeks for 16 weeks we drove to and from Chicago, 4 hours each way, 8 hours round trip. Usually for a 15 minute check up. Sometimes for longer for cognitive testing, paperwork (that damn Vineland takes forever), blood draws, etc.

The first visit it took almost a full hour to get Parker from the van in the parking deck into the Fragile X clinic. I was not not only exhausted but covered in bruises when we finally made it in the door. While many people walked by as we sat on the hall floor together either in tears or pep talking or me trying to remove my arm from his mouth... this was normal to us. Nothing about this frustrated me or was out of the norm. This was just our life, this was the life we knew but were hoping to change.

The drug trial proved to be life changing. It was a double blind trial, nothing changed during the placebo time... everything changed when he went on the real thing. For the first time ever, my son said, unprompted, not mimicking but on his own "I love you mom" (you can read about it here). I held him so tight and cried. 10 1/2 years and worth the wait to hear it repeated over and over since that night.

The drug had received approval to go into an extension - because so many patients had the outcome of such incredible improvement. The extension was to last until we had FDA approval and the drug was available to everyone with the hopes of FDA approval in 2013 or 2014.

During this time, I traveled to Massachusetts and met the incredible and dedicated staff at Seaside Therapeutics. I worked with the press to show the incredible changes this drug made in Parker, tv, newspaper, magazines... all of it. If a phone call, letter or email was needed to the FDA or government, I was on speed dial. I made it happen. Parker was improving every day, even today... he still continues to improve. I often gave the example that Fragile X had left Parker living life in a box with the lid tightly sealed on. This drug took off that lid. It let him out of the box and no matter it took, no matter what I had to do, no matter who I had to call, email, travel to see - even if it meant stealing - I would never make him live life without this drug again. I would never let anyone put that lid back on the box with him inside. I made this promise to Parker.

I was asked during an interview, "Does Parker know that these pills help him?" Every morning and every night, the boy who used to fight taking his medicine asked for his pills. Did he know? Clearly. He knew.

In the past 3 1/2 years, I have watched my son blossom into an incredible young man who is now 14. A young man who still faces the struggles of Fragile X but to a much lesser degree. A young man who rarely ever physically attacks me and when he does, in moments of sheer despair, it is nothing compared to the aggression of his past. A young man who is incredibly active in school, significantly increasing his workload. A young man who can go to the movies, to the pool, to the store, out to dinner. A young man who has become part of our community in many of the same way his friends are. A young man who can tell me when he's hurt, sick, scared, happy, excited, what he wants to eat, what he wants to do, when he is cold, when he is hot, who is friends are... a young man who can tell me he loves me.

I knew that Seaside was having trouble financially. We had seen staff go. We had been told there was financial difficulties. We were told if the study needed to end we would get 4-6 months notice. We never stopped believing we could make something work. Seaside never stopped believing they could make something work.

For 3 days this week, Parker is at Outward Ingersoll with his 8th grade class. He has been doing everything from canoeing, to learning how to tie knots, to first aid, to tracking to climbing walls and walking rope bridges. Today was day 2. For the 2nd day in a row, the young man who hasn't been able to wear jeans since kindergarten has worn jeans to school (long pants were required for this trip). He has successfully with the help of his friends, been a part of every activity and successful. This is something he could not have done 3 1/2 years ago.

Today, as I am getting FB messages and texts with parents who are there witnessing his accomplishments, updates filled with pride, I never saw the email coming that said, "They are ending the STX209 trial immediately."

That's it. It's over. Seaside will be analyzing the date from the placebo-controlled trials and will continue to work for FDA approval if these trial show benefit that is sufficient for approval. So, yes a tiny slimmer of a glimmer of hope but nothing that will happen right now. Nothing that will stop the medicine from ending in the next couple of weeks and in all honesty, from what I've learned of FDA drug trials/approval... I'm not holding my breath.


I am thankful to Seaside, the doctors at RUSH, the study coordinators -they have given me a real look inside my son for 3 1/2 years and I love what I see.

My heart is so broken, hope has been replaced with fear and pain. There is NO WAY I can explain to him why the pills will be gone. There is no way for me to stop what is about to happen. There is no way for me to prepare him, myself, his sister, his friends, our family for what could happen next.

I have to do what I swore I would never do again... put him back in the fragile x box and close the lid. I am so angry that I have dedicated so much time and heart into this... I have convinced other people to start the trial. I talked my best friend into putting her son on it. And now, not only do I have to see the pain of my family, the confusion of my son, the lid go back on his box... but I have to watch my friends go through it too. I have to watch an entire community of people I love and would do anything to make their lives better for hurt. All I can do is watch. I can't fix it. I can't take away the pain. I can't do a damn thing. Nothing.

I am so scared of what the future now holds for Parker. I am pissed off that I know I will have to watch him regress. I will have to watch him live with the confusion of why I am not fixing this.

Parker starts high school next year. A new school. A new teaching team. And no drugs.

There are other clinical trials and I will look into them. That means driving back to Chicago every 2 weeks, 8 hours round trip, $100 in gas each time and a day off work. Not exactly in the budget of a single mom but something I will figure out if the right trial is available. A new trial with an outcome I cannot guarantee to be better. A trail of a newly formulated drug that I will have to go into not knowing how it will affect my son long term.

Tomorrow, tomorrow I will pull myself together and start discussing options. Tomorrow I will focus on hope again for the families impacted by this and a way to help them cope with the - what I can only foresee as devastation - that awaits us as we are titrated off the current drug and left with nothing. We have amazing teams at the Fragile X clinics who will work with us, help us find the next step in the path for our children. They are dedicated and want the very best. I believe in them to help guide me.

But today, today I cry and I can't stop. I have tried. I need to cry. I hurt more than I can put into words. I need to cry. The fear of the pain of watching the regression that could take place is just overwhelming. The fear of losing the young man I've enjoyed so much for the past 3 1/2 years.

For the next few weeks, I will do my best to fight back my tears while Parker is awake. To treasure every single second with him where he can talk to me. To tell as many jokes with him as he can tolerate because he loves jokes more than anything. To talk about the Bulls, the Cubs and whatever sport team he wants until we've covered everything about them. Record every word in my memory and pray to God he doesn't lose his ability to communicate.

My hope right now is that he has matured enough in 3 1/2 years and made progress that was credited to the drug but was really him. Time will tell.

All I can do now is wait... and pray that with this change I don't lose the young man who was let out of that box. He shouldn't ever have to have the lid put back on.

I promised him. I promised him I would never let that happen. I promised him.

I failed. I am so sorry. So very sorry.


To learn more about Fragile X Syndrome visit the National Fragile X Foundation at http://www.fragilex.org/

12 Days- Day 6.

Half Way, Half Way!!!  I do realize that this little challenge I set for myself has helped in 3 different yet very related areas-1. I work out, because I know I have to write something. 2. I do my hair- even just minimally, and I put at least 2.5 minutes thought into my clothing, most likely 2 minutes more than previously.  3.  I write= relaxation, focus, planning time.  All three combined lead to a healthier, happier Me.  I'm already planning my next challenge :-)


1.  Workout- Today I took a walk.  Not a long walk- I moved quickly but only had about 15 minutes between patients so it wasn't much.  Tonight I did a little lifting- not the entire workout, just a bit.   I'm not going to tell you it was great! amazing! seriously sweaty! but I am going to tell you that I'm glad  I did it.  If  I wasn't writing these posts I would have most likely skipped it, but even that brief burst helped me make it through the afternoon without feeling like I wanted to kick somebody.... not professional... just true.    I read an article/excerpt a few years ago from Dan E. Burns, author of Saving Ben- a book he wrote about his son who has autism.  The portion of the article that I've read and re-read follows-

 "Aerobic exercise generates new brain cells in specific areas of the brain, including the hippocampus, the seat of learning and memory. It enhances neuronal connection and brain plasticity and improves the brain's potential to log and process new information. 
Sounds too good to be true? I thought so too. But check it out in John J. Ratey's book Spark: the Revolutionary New Science of Exercise and the Brain. Exercise alone cannot rebuild the brain - that requires a combination of therapies. But constant aerobic exercise can create the environment for growth, connection, more brain pathways and function, a solid base for more advanced treatment. It can jump start the brain.
So run, swim, or bike with your child. While you're at it, here's how to make the most of your aerobic adventures:
1. Use exercise to teach speech. Because physical activity is rewarding for most children with autism, it can be used as a motivator. Ask your child questions that require answering with words other than "yes" and "no." Go fast or slow? Whose turn? Want to swim or ride a bike? Let's (go, run, swim)!
2. Take 5-10 minute exercise breaks during discrete trial therapy (ABA) drills. When Ben was five years old, we had an apartment overlooking a swimming pool. During drill breaks, Ben and I would take a quick dip. He'd come back refreshed, stims and pending meltdown washed away, ready and willing to learn.
3. Make movies and photos of your aerobic activities and talk about them with your child. Keep a diary of your exercise ventures together with photographs. It will make a great book that you can read to your child, or that someday, perhaps, she or he can read to you.
4. Finally, use exercise to take a break from autism. Everyday life is stressful for parents and children. Exercise releases endorphins and reduces anxiety, depression, and stress. It took years of practice and pushing Ben, both physically and psychologically, but today he bikes with me as if he were born for it. The brain likes novel stimulation, so we explore state parks for new aerobic opportunities and scenic delights. It's a pleasure to swim with him. And now he can outrun me."  

I love this- It helps our entire family- we walk together, we swim (doggy paddle, float, splash) together, we hike through  Moraine View together.  I think this challenge has reminded me (again, and again, and again I need these reminders) that exercise needs to be every day, it needs to be fun, and it is GOOOOOOOOOD for us.

2.  I'm thankful for our new router.  I kid you not, It has made this whole internet experience 1001 x better! When the kids are asleep and the laundry is put away (or ignored) I jump online and veg- I connect socially with my FX family, I catch up on blogs I love, I shop... uh huh.  And now it's quick and AMAZING!!! shallow, shallow but true, true, true!!

3.  Outfit- this, peeps, has become the hardest part of these posts for me- But this is a blog about clothes?? and outfits?? and bargains?? every time i have someone take my picture (or take my own in the bathroom mirror) i look in my eyes and think... why aren't you happy?  I've always 'talked with my eyes'- bugged them out more than necessary, raised my eyebrows in silent snark, blinked them at babies to soothe, and generally sent beams of love rolling out of them- crazy mental picture, but i'm into the whole visualization thing... This is the verse that seems to weigh heavy on my heart right now 

A merry heart doeth good like a medicine: but a broken spirit drieth the bones. Proverbs 17v22.

 I don't really want to talk too much about grief and tears and a broken spirit, but maybe that's the problem.  I didn't want my sweet baby girl to have deficits- i didn't want her to struggle in so many different ways... I wanted the neuro-typical baby that the amazing doctors at RGI told me I would have.  I wanted a playmate for her brothers and a caretaker to ease the burden Bo would carry. So I didn't talk about it.  I kept it inside and the grief multiplied and spread and wore me down. 

And it's true- she doesn't have Fragile X... but she does have deficits and delays.... and it breaks my heart.  and, for a while, and maybe still, I let the grief and the anger and the stress of doing it alllllll over again (pt, ot, st, dt, ieps, developmental pediatrician, geneticist, pediatric neurologist, fear, anger, tears, tears, tears)  steal my joy and drain my happy away.  I was brittle... and my eyes show it.   Who do I think I am?  Do I not know people who have more than 1 child with a disability, who deal with every struggle, every day, and a million more that I've never thought of?  Did I think I was automatically exempt, secondary to Fragile X?  Paid whatever cosmic price needed to be paid to even the ledgers and now I'd have sunshine and happiness and rainbows flying out my arse?  ... i guess I did. ridiculous.  and so down, down, down into the pit I fell.  and just when I think I was climbing out something would push me back in again.  I'd love to say 'I let something push me back' but the truth is, i was holding on tooth and nail to the little bit of happy and focus I could find- I wasn't giving my joy away, grief was taking, taking, taking it.  I learned a lot more about depression and anger than I ever thought I would. I've learned that unless you have fought the darkness you have NO IDEA what it's all about. I've learned about To Write Love on Her Arms and I wrapped myself up in living, in putting joy and love and peace back into my heart.  

so.  there it is.  we have 3 beautiful, amazing children, 2 of whom happen to have deficits and delays and struggles that, unless a miracle occurs, they will battle their entire life.  And I am their momma... and I will do every.single.little.thing. in my power to wrap all 3 of them in the bone deep knowledge that I love them, that I'm proud of them,that I think they are amazing and shiny and wonderful, and I will help them be the very best 'them' possible.  

and here I thought I'd just choose a different, older picture. one where you can't see my eyes.  

Father

My Father's Father was  part of the first generation of his Family born in America.  The Maslankowski's had immigrated from Poland, had their name shortened by a boss who felt 12 letters was 6 too many to mess with, and had made their way to Chicago by the time John Florian Maslan met my Gram- a gorgeous Italian whose family was none too happy about her marrying an older man... especially one from POLAND!

Gelda Panateri and John Maslan

So lovely.   

My Mother's Father was born into a large family between the coal mines and farm fields of Southern Illinois.  He was a rowdy boy who wanted to run away and become a 'Bo-Ho' :-) He was too young to be drafted for the war, and while the older boys were away he snagged the heart of the town beauty and moved from the red dirt town of Mulkeytown, population 200, all the way to the big city of St. Louis.

Sarah Francis Annear and Owen Dean Furlow

So Gorgeous.

My amazing Father was born in Chicago- in the midst of 5 other brothers and 1 Sister.  Between  Big City Shenanigans, the Vietnam War, getting tossed then re-admitted to ISU and convincing the sweet 17 year old Freshman  to skip class for a burger at Steak and Shake, he turned into quite an awesome man.  When I think of what I have from him- my love of music and dancing,  my crazy wild fashion sense, the constant craving for change and to be on the move... not to mention my dark hair and eyes, Maslan nose, and love of rye bread,... I'm hopeful I inherited all that and more.  My daddy can speak to anyone, and walk away with a new friend.  He's kind.  He makes everyone feel included and part of the fun.  He's got a keen sense of the Greater purpose and a knowledge and wisdom of what is True and what is simply filler.  I love him and can remember singing and dancing in our kitchen, riding bikes, playing the trumpet, singing hymns in the car, and driving lessons in our enormous chevy caprice classic. Dancing with him at my wedding, holding on tight at his momma's funeral.  crying in his arms about Abe's diagnosis.  He's held every grand-baby within hours of their birth.  

how beautiful my mom and dad are- he so dark and handsome, she so fair and pretty in her mini-wedding dress. 

We are who we are because they were who they were.... pronoun crazy, but you get it, right? 

I am so thankful for the Father's I have known, the Father I have, the Husband who is an amazing Father :-)

Wishing all the daddy's in the world a wonderful day tomorrow! 

xo

.

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.  

Here

My COMPUTER is HOME!!!!

 whew.  i was going through withdrawal.  noticing little twitches and aches as I used the Husband's computer, working  hard not to download, upload, or forget to close the 7 tabs i like to keep open at all times.... don't want to miss anything, ya know?? He was all good about sharing... so long as I didn't drop a crumb within a 3 foot radius, have my ever present cup of coke zero within spillage range, etc etc.   just kidding.... mostly :-)

Any who.  It's back... and wiped clean. 

 right.  

no pictures, no data, no nothing.

 I had last backed up (right? girl you look good, whydon'tcha back that thing up) my computer in november of 2012.  I'm trying not to cry about it... but i'm crying.   That means that 7 months of my babies life in pictures is gone.  They tried everything short of the $800 machine somethingorother in Arizona.

 Fine.  I'm fine.  fine.  

There's too much to try and cram in a catch-up post, so I'm just starting here and moving forward.  

I'm here. 

I'm breathing deeply. 

I can walk as fast as I can run.

Ok, not *exactly* but pretty darn close.  

I ran a few times in the last few weeks and my hips hurt.  really hurt.  and so, because I'm working on making wise, future conscious decisions, I've decided to return to my speed-walking roots... and by roots I mean that somewhere in my past I used to walk quickly and I'm doing it again and so therefore... whatever. 

roots.  

I love wwww.mapmyrun.com It allows me to go where the mood ( and the crazy derecho wind) takes me  and see how far I've gone once I come home.  Yes.  I know there are apps that would tell me that mid-walk/run, however, I'm focusing more on not focusing <---- you get it, right?  so I come home, relax, and after a bit, check my mileage.  Turns out that tonight I walked 2. 73 miles in 29:22.  yep.  and my hips feel GOOD! it's a win win!! Another win?? My trusty heart rate monitor let me know that I had burned 339 calories in under 30 minutes!  chatted with the neighbors, came in, did a bit o lifting and got the babies to sleep.  

As I was holding my big kid close on the couch, soothing out the awful bedtime blues we've developed, I tried to wrap my head around walking vs. running.  You'd think that i would have learned this lesson many, many moons ago- physically and mentally.  Running *seems* glamorous.   The bodies are gorgeous, the shoes are colorful and sleek, the wind in your hair, the heart pounding playlists, the crazy themed 5 & 10Ks .    Nike and Pinterest don't have the slick, glossy slogan blazing ads for walking.   

and a little, small, hurting, sad and angry part of me said that this- this running stereotype that leaves out the grit and the pain and the hours of dedication, blisters, fractures, and mental strength. this surface glimpse-  this is what a neuro-typical life is like... and walking, this slower paced, glam-less life is for those of us who were dealt a different hand.  a non-neuro typical life.  

wrong.  that's wrong.  You can't run?  

Who cares?!! 

 <--- me obviously, at times, but I'm GETTING OVER IT. 

I am thankful to walk.   Physically, I am so very, very thankful for legs that work, for lungs that keep me oxygenated and a heart that pumps and arms that swing and the SWEAT that comes when I walk quickly. 

 Mentally-  I am thankful for this life that I have.

  I am thankful for my amazing, amazing babies. 

  I am thankful that they are teaching me over and over and over (because I am apparently the slowest learner of this subject ever in the whole world, or at least tonight) that this life is what you make it.  That YOU make the playlist.  YOU buy the shoes - Holla!! and YOU set the pace.  

got it?  

go forth, sweet friends, and make it amazing.

40 Days- Day 36

Here I am!!! - and for all you crazy math types, sorry for the out of order numerical business :-)  apparently when you're tired enough you do things like skip 10 and say it's post 44 of a 40 day challenge , and/or forget your computer at work all together when you're leaving on vacation!!! so, yeah... it's not really day 36 but that's what we're calling it,  just to keep things flowy and groovy and ordered and organized  <----- because, you know, we're so organized around here :-)  or not.  

a new year is coming-   

It's the end of the month, the end of the year, and billing and files and reports and re-certifications and everything else under the sun must be done before tomorrow's party (oh baby- it's gonna be a good one!! pictures to come, here's a few from last year).  and tomorrow I'm leaving the job I've had for 10 years- just a smidge of anxiety rolling around about that particular subject.  

I've seen these folks at least 350 out of the last 365 days for the last 10 years... I've sat and talked with their children, their siblings, and in some cases their parents.  I've rejoiced with some.  I've grieved the loss of many.  I've finagled and fudged and out right lied to keep peace and order in my little speech bubble.  and now it's popping, as all bubbles must.  and we (myself and the lint in my pocket) are moving on. 

I have no pictures, currently, from our water park adventure- I will steal my momma's phone eventually, and show you the good times we had, right now it seems so long ago, buried under stacks of papers and busy. 

I am missing my Gram and Grandpa.  They loved to watch the birds, and my Gram in particular loved Cardinals... seems I see them everywhere.  I feel like she's holding me tight, encouraging me.  I miss her. 

sometimes you just need to wear your awesome pink coat if you're going to storm a castle and slay a dragon or two.  You gotta look good while you're wreaking havoc on the skeleton soldiers from 'the bad part of the castle' <----- per Bode.  

sleepy sweet big kid.  so precious to my heart.  Loved, loved the water park.  he looks like a teenager here... he's only 7.... 8 in a few days. 

I've been sock bunning it up! loving the corduroy shirt and sparkly scarf along with my favorite boots of all time- that now have the heel worn completely through to the STYROFOAM!!! oy.   and rocking the wrist bands and no- make up look post water park.  good times!

precious son- we were wearing hats, reading stories, being lions. being present.  

awesome new POP of color shoes from walmart for $16.00- added the dr. scholl's work inserts and they do a pretty good job of keeping me comfy and moving- not for exercise due to complete lack of arch support but with the inserts they may do for work.  

fat free cookies- uh huh.  I Like them.  I also like rice cakes and quinoa and other sort of card board tasting stuff...  but with a cold glass of milk they go down rather well.  

no stats.  no sweat <---- other than mental sweat... brain melting. 

see ya later, peeps.  happy almost new year. 

linking up for Mondays!

Dance

I'm telling myself that I will write more.  


I've changed the tag line.  I've made grandiose decisions and tossed them out before I'd even began- including, but not limited to 
1.  giving up diet pepsi
2.  giving up ice cream 
3.  giving up shopping
4. fixing my hair every day
5.  packing my lunch...


that's right, BIG goals (feel free to laugh) that are already forgotten because I realized that I, most likely, would be 3 hours in and out the window they'd go.  


I'm left with one that I'm holding on to.  I've decided that, every day, I will dance.  

Dancing- letting go, understanding that whatever it is that's happening right now can wait 15 minutes while we turn up the music and boogie. 

Realizing and accepting that life is hard.  That I can't make it easy.  That I can't always make it better.  

Understanding that I have so much to be thankful for.  That God has a plan.  

Knowing that our time here is short- that tomorrow is not guaranteed.  That we will lose people we love. 

Deciding that, while we are here, we will hold tight to each other.  

Will this dancing make life easy? no.  Will it make life make sense? no.  

Dancing will remind me that I am alive, that I have a body that moves and a heart that is beating and that I have a purpose- that God has a plan for me. We will dance... and you're welcome to join us.  

"Life may not be the party we hoped for, but while we're here we should dance."- author unknown

little bits of happy

happiness is finding lip balm you thought you'd lost- right pocket, pleather jacket, Burt's Bees original- thank you cold front!  

happiness is pig tails, looking for eggs with her daddy.  She had picked up Abe's basket as his was already full of eggs- smart cookie.

happiness is holding on to the ones you love... belonging to each other.  

happiness is words that remind you what you are working towards. 

what makes you happy? remember (self) that happiness is not ˆjustˆ the big things- what little thing about today made you happy? what will you do today to be happy tomorrow?