Thursday, September 29, 2011

Down syndrome's rewards touted as new test looms

Click for MSNBC news article Positive View Down syndrome's rewards touted as new test looms

"Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome."

Our lives are normal, our lives are the same chaotic race as the Jones', the Jolie-Pitt's and the Beckam's. If not, our lives are far better then the referenced because the view of the perfect family have not been blessed to live the Super Hero Life. I feel deflated when this topic is brought up - even though this article is the positive views of Down syndrome it reflects the negative as well, it just means that there will be less and less miracles in the world, that the medical community is still trying to control fate and play God's hand. I wish that human kind would leave well enough alone. Let the stars align the way they see fit, that's the way it should be... Myself and my family was chosen and given this blessing of having a child with Down syndrome and I would not trade or change my life for anything. I honestly thank God daily for the gift he has given me cause I have no idea where I'd be with out my angel. I can not imagine it any other way - Perfection is Made with 47 Chromosomes.... The negative views are from the ignorant, who have narrowed their intellect with out researching the truth.
The life of Down syndrome is far better then the life without.

A follow up article to Dr. Brian Stotko's research http://www.msnbc.msn.com/id/44708270/ns/health-health_care/t/inspiring-portrait-down-syndrome-odds-perfect-baby-pursuit/

Tuesday, September 27, 2011

Such is Life...

Life is never dull, it is full of those moments.

4 vaccines all at once last Thursday - FLU SHOT included in the mix.
  12 hours of trying to tame a 102 fever.
  12 hours of crying.
  12 hours of every 4 hours Tylenol wearing off and rocking until we fell back to sleep.
As the sun rose so did the little man feeling much better, but still punky from a feverish night. When they say vaccines don't make you sick that's a total crock of $#!+.

Yesterday our good neighbor called Brian at work because our smoke detectors kept going off. They are hardwired so when one goes off, they ALL go off. Our neighbor walked around the house but didn't see any smoke (thank God). Well, they do "go off" every once in awhile for short bursts and stop, they didn't stop yesterday. A trip to Home Depot for a fresh pack of batteries and that seemed to do the trick UNTIL... Yup, putting Asa to bed and he was almost asleep - BEEP, BEEEEP, BEEEEEEP. Asa tries to whistle to imitate the sound - LOL Brian comes into Asa's room not so happy and totally bewildered. I told him to go around and see which one is blinking red and that will tell us which one is setting them off. It happened to be the one in the living room, a word of advice for those that have hardwired smoke detectors with battery back-up. It is good to blow or suck the "junk" out of them whenever you replace the batteries. Brian pulled it down and unplugged it, I told him it probably needs to be vacuumed. Well, he shook it and wacked it on his hand. SO MANY BUGS fell out of it! It was nasty, all these little dead dried up bugs. So word to the wise, vacuum out your smoke detectors at least once a year!

Big School, Van, Preschool update;
Asa is doing excellent with his new busy schedule. We go to BIG School (insert the sign for BIG followed by school sign) M, W, F for Therapy, then he rides the van with Greg (insert sign for G at forehead) to Preschool (insert sign for P and then sign for school). He does this all by himself at 4 years old. No Mommy, No Daddy just his excellent team of therapists and teachers. He rides the van with only the driver "Greg". Greg helps him into Preshool (the next town over) but Asa walks through the doors hangs up his own back-pack and goes off to play. Preschool is done at noon, and Brian or Bampie (Grampy) picks him up. He is exhausted by this time and immediately falls asleep in the car on the ride to daycare, but he's doing good and gets a rest after lunch. I'm so proud of my little man and can't believe he's such a big boy...

Wednesday, September 14, 2011

Tuesday, September 13, 2011

3 Years Ago

3 years ago I joined a Down syndrome web board community called Downsyn.com. I was a lurker for long time before I finally joined, that was a difficult step to make, to others it may seem so easy to do. But when you are given this blessing of a child so incredible it takes a little while to blossom and reach out to those who share the gift that you have been given. I was welcomed by people from all over the world who I instantly felt were family, they knew the part of my life that nobody else understands - my life of love and laughter, tears and joy, my love of having a child with Down syndrome. This place was a daily escape for me for a long time, my time of learning and understanding. I am not a daily traveler now, but stop in every once in awhile and check up on people. One person I met here is Leah. Leah is the Momma Bear, The Expert, The Go To Gal. I follow her blog Garden of Eagan. She had this video posted this morning, a tribute by one of the daughters of a member of the group, mom's name is Adrienne. Over the years I have followed Adrienne's posts of Russell, of him losing his sight and the challenges that she and he have faced and met head on at every turn, an inspiration she is and she has obviously passed this on to her beautiful daughters. Here is Russell's older sister Regan's video tribute to her brother, I could not help but share, fantastic job Regan! "tissue warning".

Wednesday, September 7, 2011

Oh what a beautiful day...

Labor Day Weekend has come and gone for another year and we tried to suck the marrow out of it. We did not travel or have grand plans. Though Asa was adamant he was at the beach! "Beach Momma, My Beach" and how could I suggest anything different...



I have watched my butterfly bush flourish this year. Last year, and I'm not lying, it was a 1/4 of this size! It smells so sweet and the butterflies are bountiful...




So, we're just sittin' back and relaxin', enjoying the last days of summer before the north wind blows and the nights turn crisp with a chill in the air. Preschool has started along with therapy 3 days a week. It is a lot, but we'll just have to get used to the hustle and bustle and make sure we go to bed early!

About Me

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My name is Jackie and I am a mother, wife, friend, sister, daughter, cousin to many, and a dreamer of sorts. I dream of many things and one is a life full of acceptance, achievement and success for my Super Hero son Asa. He's got extra good stuff that comes with a little thing called Down syndrome. We live in the beautiful state of New Hampshire with our 2 Bulldogs; Rosie, Frankie and 36 chickens.