Moving

Hello, sweet friends!! 

I've moved :-) I've loved my time here at Babe on a Bargain, but I'm ready for a new focus.... or at least a new tag line :-)  

You can find us at Sweet Life Z

More sweat, more beautiful babies, more focus on making this life amazing.

xo 

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

.

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.

there you go- edit edit edit

Once again, I typed while tired 'TWT'... and left a few things out :-)  I didn't send some poor person a random pic from pinterest... I sent them the message at the bottom of  this post.  The picture was all for me! 

So I'll try not to be so brief tonight- i think my last post led a few people to believe we had RANDOM ticks in our home!! Jumping from the ceiling into Bodies hair <<----- not the case :-)  Bo and his cousin Mark had been playing down by the creek, digging in who knows what, playing with all of God's wondrous creations... and came home with ticks!!! i really, really, really don't like them.  at all.  not even a little bit.  I now know that tweezers will do the trick, YUCK, and that I'm not afraid to set things on fire in the house... just ticks, but you get what I'm saying. no ticks.  I'll burn 'em up.  quick like.   

This weekend we had some of my aunts on my mom's side in for a visit- We attempted a 'girls picture'

Aurelia was kicking and squealing and laughing, which made all of us laugh... ok, I may be grimacing, but ya know, it's a bit tricky to hold on to 30 pounds of wiggling Bell!!

 Abe LOVES it when we  take pictures of ourselves- we reverse that camera and start snapping! 

we take a LOT of pictures...

a Lot a LOT of pictures :-)

I love that he loves it!  

 Bodie  is getting really good with his Nerf guns!  He's also getting REALLY TALL!!! ok, not *really* tall... but he's growing quickly.  My amazing middle man! 

We had a lot of fun with cousin Christopher-  he was amazingly patient, chasing a football/boomerang/airplane at least 756,389,402 times!

LOOK at that face!!! such a clown! 

My cousin Jen and her sweet son Parker surprised us on Saturday and came to join the party!  I miss this girl so much... she's a strong momma. 

This is pretty much how we all felt by this afternoon- so full of fun we couldn't keep our eyes open!! 

The arts and craps project is DONE!! The slot is at the top ...it's a card box...  :-)  I had painted the boxes and tacked the ribbon and flowers on at the beginning of April but had never finished it!  Since the Wedding is next Saturday I thought I had better get it done!! you know you own a penguin ball! 

If you've been around me for more that 45 seconds you probably know that I have children.  Being Generous, if you've known me for more than 24 hours, you probably know that some of my children have special needs.  You may have heard, seen, or read a post or comment about the words you choose... and how the off the cuff use of the word 'Retard' as derogatory slang is  pretty much enough to make my heart stop... for just a second. I think to myself 'how is this ok? who, really, thinks that this word is just fine to use??' It came up again tonight on social media... in a person's post, someone who often comments on my posts from the Spread the Word to End the Word campaign.  so, I calmly sent them a message... worded politely.  

hey! hope you're having a good night- I don't know if you've seen any of my posts- I work with an organization that has a 'spread the word to end the word' campaign. We try to educate and inform people to choose a word other than 'retard' or 'retarded' when they are mocking someone/something... Basically, when you use the word 'retarded' you are making fun of someone, who through no choice or fault of their own, has different abilities- like Abe. People say ' i didn't mean it like that'... when you use that word, your telling your children, your friends, your community, that it's a fine word to use, and that the perpetuation of that stereotype and disrespect is acceptable. Abe can't speak, so I'm speaking up for him. Have a great night.

Then I found the below sign on Pinterest

 a good reminder for me.   I encourage people to speak up ALL the time but find it so hard to do myself.  No more.  

Happy Memorial Day!  Thankful for all who have served. 

TICK

I have field-tripped up a STORM here lately!  At one point I could no longer remember if it was Abe's or Aur's movie- Bo's zoo day or Abe's park- Second Grade Sea Creatures or Kindergarten Celebration.... oy.  

we left the movie after about 20 minutes... not our thing.  Went to see Daddy- so happy :-)

made some crafts... and c.d'.s for the teachers that we love!! We had over 20 gift packets ready to go!! 

middle man's ice-cream!  we had a great time at the children't museum and the zoo! 

highlights!!!

and speaking of hair- we pulled 4 ticks out of Bodie's head... YUCK!!!! they must be prevalent this summer!! 

close

my son, my Abe.... he loves mud.  he makes his own- handy and independent of him, no?  I'm taking the stance that this is building up his immune system. don't tell me if I'm wrong :-)

arts and craps again!  penguin is all ready to go for school ... Abe likes to take his head off, will most certainly let him at 3:10 pm tomorrow.  

remember how Bo wouldn't smile or look at the camera??? not so much any more!  I love, love, my days home with my babies.... I might be ready for a walk  ( to California) by 6 pm, but I will treasure these memories and dog pile snuggles with them.  

cheese!!! We're awake far too early here... but The Husband is busy, busy with end of school year, end of spring season, so we all wake up and hang out to-ge-ther.  

sometimes you just need a snuggle right. now.  My Bell is not too shy to tell me when and exactly how she would like to be nuzzled- see her little hands?  here momma, she says with her sweet hands, kiss my cheek and hold me tight.  love. love. love. 

friends- we are good.  we are taking this medication business in stride.  we are looking toward the future.  we are praying.  we are staying calm and close to one another.  

doesn't mean I don't freak out every now and then... simply means I trust the future to God's hands. 

xo 

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/