The Miracle Continues: A SMA Angel

Rewind:  They told us to take her home and make her comfortable - she would not see her second birthday.  Fast Forward:  She is thirteen and all she wants is a Big Time Rush pillowcase!  What?  That was October 18 1997 - "we think she has SMA Type 1".  So how can we take care of her?  There is no treatment or cure.  What do we do it she gets a cold, stomach ache etc?  There is nothing that can be done.  WTS? There has to be - this is not 1970 or 80 or 90 this is 1997!  Look on the internet -- yes there is information - not good but we need to find out what we can do where we can turn.  Are there other families?  Yes -- there are.  What are they doing?  She s 8 months old with a great smile, happy attitude and a love for life.  Fast Forward:  Who is Big Time Rush?  Just the new boy band out that every teenage girl is in love with!  Take that you doctors -- she is a teenager enjoying the crushes of a teenager.  Enjoying through the years all the hits -- first Lizzie McGuire ( Hillary Duff), Hananh Montana ( Miley Cyrus) and NOW Big Time Rush her first true big time Crush boy band.  Bring on the concerts -- we are ready.  Take Her Home and --- Make her Life Liveable.

More on a SMA. Angel.....

I told you how SMA started in our family a few posts ago.  When Madison was DX in October, my sister had already set a photo shoot date in August for the Angel Shoot for children at a local photography company.  It was in November almost one month from the date she was DX.  Angel - reading all the information about SMA  and the kids being mentioned as angel was to weird.  She went to the angel shoot and all the pictures came out amazing.  (see photo of all the angel pictures of Madison over the years).  These photos became the image for our annual fundraiser called  Madison's Angels at the End Zone.  Madison's Angels became the designation for all of our donors, vendors, family, friends, volunteers  and fundraising events. 

So it is October and we will celebrate the 13th anniversary of the SMA DX.   The two holidays were coming up, my mom could not stop crying every time she came down to visit when she saw MAdison.  We had to tell her to stop because MAdison was going to be ok.  But then how did we really know -- believing and staying positive is the best way to attack the negative.  We made lemonade when our lemons were thrown at us!  Madison continued to show us the way - she was still smiling, learning to talk, eating her baby food, playing in her exer-saucer (which was really cool), She was growing into a little person - a person with a personality, emotions, feelings, etc.  Still, how can this little girl have this huge disease!  Was it unfair?  Maybe - maybe not.  They say things happen for a reason.  MAdison was put her for a reason - to let us know that no matter how terrible things can be you need to find the positive and work to keep your life in check.  Amazing how a little kid not yet a year can radiate such positive energy.  

Every morning she would wake with a smile on her face and her eyes wide open - waiting to absorb what will happen in her world that day.  She never wanted to be limited - she went all everywhere.   SMA was not going to stop her.  Or her family.  More to come ....  (Note:  The MA in Madison is Madison's Angels - what a fit!)

the moon lives on for another day

Wow what a day.  The idiots who broke into several cars in the employee lots yesterday decided to come back today.  How stupid - we had employee patrols going on at every lot.  They saw one of our employees heading to them as they were slowly cruising the lot - then took off.  She got a partial on the plate but knows the car.  Like are they stupid or what?  Morons.  Well the storms were a hit over the club yesterday.  Water Water everywhere -- flooding of the laundry room, over flowing of the baby pool backing up to the door and flooding the foyer.  I wish i was there - seen that many a times in the past.  The dead tree is still standing though!!!!!  The best I was told were the flying umbrellas off the bistro patio - with one landing in the dumpster.  

They are saying the moon will stay full until Friday - can not wait to see what it brings on. 

Today the little kid I teach swimming lessons to made a huge jump in his progression of swimming.  At the beginning of the summer he was extremely scared and had his swim belt filled with floaties.  As the summer went on we slowly took out a few of them.  Today - with the weather being in the 90's - yes you heard right- I took him to the slide pool which is only 2 - 3.5 feet deep.  I had him come in with out his belt on - knowing he could stand.  Put on some fins and told him what to do and he did it.  It was so awesome.  We had to take advantage of going outside to that shallow pool - our indoor starts at 3.5 feet and he can ot touch them.  We had a blast - found a frog in the gutter and  them we lost it!!  It was a great day -- all from the full moon.  A great thing.

Full Moon Tonight

I am so psyched that their will be a full moon tonight.  Not just any full moon - the Harvest Moon.  The last two days that moon has been according to the papers a not yet formed full moon.  But tonight it is supposedly official - the Full Moon.  I love when there is a full moon.  Crazy things happen leading up to it, on the day and after it.  I can not wait to see what will happen at work - what fun stuff will come forth from co workers and members.  Usually Thursdays are our slowest day - who knows the pool will be packed, new people will invade or old people who have not been at the pool in months will come.  Tonight we had a great storm again - tornado sirens going off all around us -- the projected path was going close to the club - did the electricity go off, did all the chairs and umbrellas go into the pool, did that dead tree fall over yet, blah blah blah!!!!  Oh the full moon - brings out the best in people.  They become moody or happy.  They become greedy or generous.  They become helpful or selfish.  What will happen - can not wait to see.  Love the full moon.  What about you?

Buckeyes 3 - 0

The OSU Buckeyes (football) are 3 and 0 - and looking strong (even though the special teams is weak).  They were rolling in the first half with Pryor 17 of 18 with 16 straight pass completion until the announcer said that fact.   Why is it - when a fact that is so positive is stated - a jinx starts to happen.  After that Pryor could not hit his players but the other team was looking good.  He was  3-9 with 2 picks.   Good thing OU had the fumbles and the jumbles.  They just could not hold on to the ball.  Finally after a D safety did the cobwebs get cleared and Pryor and the O was off again.  This team is very strong - maybe too strong.  Getting a lead of 34 may have bored the O into playing sloppy.  I wanted the juggler vein right before the half - but got the pick.  Would love to see OSU just once get more than 45 points.

My new ME!

Is kettlebell training.  Would never have thought a cannon ball with a handle on it can be so tough to do!  I am hooked on it.  What is kettlebell?  Check it out at www.dragondoor.com  Learn the standard movements - lose weight and gain strength fast.  It is an unbelievable workout.  You can do a hard 20 minutes or a long 45 - 50 3 set of 4 movements.  The Russians have been doing this for many many years.  It is an old school back in the old days training that has coming back.  Train with the best RKC instructor in Columbus at www.premieratsawmill.com 

What is SMA or Spinal Muscular Atrophy?

What the S--T is that?  Yes what is that.  Thirteen years ago I did not know what this was>  Even though I watched the MDA Telethon and JL was my favorite actor.  Never put two and two together until that day October 18 - 1997.  That was the day my younger sister told me my niece may have it.  I was at work when she called to tell me to be home for my nephew because they were being admitted.  I was like what for and she rolled those words off her lips --- Muscle Biospy they think she has Spinal. Muscular. Atrophy.  I think I asked her to spell it as I could not get how a little girl who was all smiles and joy could have something like this.   I had to write it down and said they have to be kidding right.  NO.  As I went back to work I told a few co-workers what I had just heard.  I had the paper with the words on it in my hand and was reading it off.  The words hit me -- Spinal SPINE.  Muscular -MUSCLE.  Atrophy - WEAK or WASTING.  I felt sick and had to leave.    Good thing I only had 30 minutes left to work.  Driving home - the words kept popping into my head.  Only thing I could think of was to get to the computer and do a search.  Technology - the search came up - MDA - found SMA- first time I read it I said no way.  Went to another search -- read it and was stunned.  Went back to the MDA site and reread that section on SMA.  After reading it I realized tears were coming down my cheeks and I was frozen in time.  Waking up I said -- NO way how can this 8 month old happy as a lark little girl have this  SMA type1.  SMA type1 the worst type -- she sat in her exer-saucer and spun around grabbing the elephants nose and reaching for the spinning balls.  She ate her baby food like a champion and she was saying some words.  And yet the descriptions for a SMA type 1 child said -- she will never walk, eat, talk or breath and die before the age of two.  WTS?  My mind was spinning - Gosh my sister, my mom who was with my sister -- they are at the hospital waiting to admit her.  Then I heard the door open and they came in.  The only good thing about that day was -- she was not admitted for the surgery.  Another doctor told the first doctor there was a blood test for SMA.  So she had her blood drawn and we waited another 4-6 weeks to hear she has Spinal Muscular Atrophy.  Happy Thanksgiving and Merry Christmas. That was when our family vowed we would do everything and anything to keep her alive.  Not make her comfortable.  Not make small memories - but long lasting one. To defy the odds --- because when you looked into her eyes you saw something more than death you saw unconditional love for living.  Her soul was an old soul - with wisdom and knowledge that only came from a higher being.  She radiated sunshine, fun, laughter and a spirit that said I will not give up.  She gave us the strength to help her through her 13 years.  I would not trade her for any other kid -- she is not replaceable.  She is the driving force in all that we do for her and our new family - the SMA community.  The SMA community is other families with SMA and the SMA researchers.  She is the leadership and inspiration behind Miracle for Madison and Friends - SMA Research at The Ohio State University.  Read more about this at www.miracleformadison.org  Spinal Muscular Atrophy - you make it what you want it to be - Madison made it into an inspiration to live and to lead a charge to find a cure to end it.  Read about how her small fund has paved the way for Gene Therapy Research http://www.dispatch.com/live/content/local_news/stories/2010/03/02/gene-therapy-fixes-muscles-in-lab-mice.html?sid=101

At the end of her Songs of love song - it says WE LOVE YOU MADISON -- this is what it is all about - not SMA.