Back Dating....

Im in the process of transferring all my posts from my old blog, so be sure to check them all out =)

"The Special Mother" By Erma Bombeck

"The Special Mother" By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew."

"Forrest, Marjorie; daughter; patron saint, Cecelia."

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and Independence. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."

Science Finds Down Syndrome Highly Contagious...

I got this piece from a friends blog. I love it, hope she doesnt mind that i stole it!

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways. Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed. The section of the brain used in logical thought undergoes dramatic changes.

Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classrooms of medical students and educate the population at large about issues they are passionate about. These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators. 
The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individuals fortunate enough to be infected.

Wendy Holden

Smelly Hand...

So today we were working/playing outside...Natalie and i in one part of the yard, bud in another, when i heard bud scrambling, looking for something...i asked him what you looking for, he goes hang on a sec...so he brings over a bucket from Natalie's sandbox over and I'm thinking what are you doing...then i look in it, and omg...there was 4 baby garter snakes!!!! I, of course, had to run and get the camera...lol...ill post the few pics i snapped, i could only snap a few due to having a REALLY bad smelly hand! Why you ask?! Well, Natalie was a little reluctant to hold the snakes, even tho daddy was doing it...so i grabbed one to show her it was fine, and then she was ok...wouldn't hold it but touched it afterwards. Well as i was holding it, bud said beware...snakes are stinky, i had no idea! In our younger years we had snakes as pets, i remember them having a smell...but NO WHERE NEAR like these! As most of you know that i have a camera that needs 2 hands to operate it...I had given bud the snake i was holding and went to take some more pictures...well when i put the camera up to my face, the hand i was holding the snake with was of course right next to my nose.....O M G.....i almost threw up from the smell of it! GROSS! I'm glad Natalie wouldn't hold it, cause i woulda said screw the pics we are going to wash our hands! Which we did a minute or two later after we let the snakes go at the back of the yard!!! In fact we washed them 3 times with 3 different antibacterial soaps!!! That prolly will not surprise most of you! 

This little snake moved so fast, as soon as id focus he'd move again!

The last pic taken, cause i had a smelly hand!

That was our exciting bit for the day...hope this finds you well =)

Welcome To Holland

Ok, so no one wants to hear that their child has an irreversible diagnosis. When we recieved Natalies, it felt like our world was going to collapse. We had just had our first baby, it wasnt enough being first time parents, throw a diagnosis on top of it! It was very hard in the begining. While the pregnancy itself was smooth as can be (aside from 17 weeks of throwing up!), we had a few scary ultrasounds, and kind of a rough birth. So we are recieving this diagnosis that is just hard to hear for one, and what made it harder was that her form of down sydrome is rare, and that the drs couldnt tell us what to/not expect. It was scary. Being that we recieved the diagnosis while she was still a newborn, Bud and i didnt get on the puter much to do the research about it, we were just goin one day at a time. Well my mom went google crazy! In her wild search for information, she came across this...and i have to be honest, its what got me thru, until i could honestly say i was ok with natalies diagnosis. It made me realize that no matter how hard things get, it will always be ok. 

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience. To understand it, to imagine how it would feel; its like this:

When your going to have a baby, its like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, The Michelangelo David, the Gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands, the stewardess comes in and says, "Welcome to Holland."

"Holland??" you say. "What do you mean Holland?? I signed up for Italy!! I'm suppose to be in Italy. All my life Ive dreamed of going to Italy."

But theres been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they havent taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its just a different place.

So now you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. Its just a different place. Its slower paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that is where I was supposed to go. Thats what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didnt get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland  

This story still gets to me...because it takes me back to the very begining, of when nothing was known...we barely knew she was healthy. But i know i wouldnt be who i am today without natalie or this story. Those two things alone have shaped and molded me into something id never have imagined...in a good way of course =)

Hope this finds you well...

Jess.

7 Years Today....

Today is our 7th wedding anniversary! I cant believe its been that long....

Happy Anniversary my Love =)

The Diagnosis....

**I posted this on my myspace blog quite some time ago, and that ones private...i thought id share with everyone, being Down Syndrome Awareness Month and all =)**

My sister (in law…but I don't go by that!) wrote a paper for one of her classes a while back about Jewells…and I came across it as I was cleaning my room, and just thought id share!! It can be hard to read sometimes, because it takes me back to when we were so full of fear of the unknown, and the doctors knew very little about her diagnosis...being that it is a RARE form.

 

The Jewell of My Life

 

        The perfect family is all my sister, Jessie ever wanted; her high school sweetheart for a husband, a nice house, and beautiful children. A dream from the time she was a little girl, until it became reality. She had every thing she ever wanted a wonderful husband, a nice house, and she was now pregnant. Overcoming adversity and odds was only the beginning for my sister Jessie when she became pregnant.

        The day Jessie and her husband Bud found out she was pregnant was a miracle in itself for the married couple. They knew it was special right from the very start. They felt an overwhelming sense of peace, like during a Sunday morning drive. Being pregnant for the happy couple was a beginning of a whole new way of life. The very first ultrasound was quickly approaching and at 18 weeks the day finally arrived that they would see their beautiful baby for the first time. Seeing their baby grow inside Jessie's womb was one of the most important days of their lives. Just as all parents, Jessie and Bud wanted a healthy baby, but unfortunately bad news came forth. Baby Bigelow was diagnosed with a choroid plexus cyst of the brain. A choroids plexus cyst is a pocket of spinal fluid in the back of the head near the neck. This was one of the first signs that Baby Bigelow was in for a rough ride. The doctors advised the Bigelow's to come back in four weeks to keep an eye on the cyst. This was the first time that they had heard the ominous words of downs syndrome. Although, the cysts are not strictly associated with downs syndrome, they are one of the warning signs doctors look for in ultrasounds. The second ultrasound at 22 weeks revealed a bitter sweet moment for Baby Bigelow; the cyst was gone, but another problem arose. Hydronephrosia is another word now entering Baby Bigelow's medical chart, also associated with downs syndrome. What is Hydronephrosia we all wondered? It is fluid around the kidneys. The doctors determined the chances of this baby having downs syndrome are very possible, but not entirely, so they instructed them to return in four weeks for another ultrasound. During the mean time, the doctors wanted Jessie to endure a blood test and or amniocentesis in order to more clearly pinpoint the problem. Jessie and Bud decided that the risks were too high and if there were something wrong with their baby, it was nothing they could not handle. Therefore, four more weeks passed and at 26 weeks the Bigelow's entered their third ultrasound, and to their surprise and to the doctors, the hydronephrosia had disappeared. This was a great blessing for the Bigelow family and with the doctor's consensus; Baby Bigelow would be a "normal" healthy baby girl.

        The birth of Baby Bigelow did not go as planned as most births do not. The gestation period was normal at 39 ½ weeks, and then began the third hurdle the Bigelow's were forced to endure, labor. As the family gathered at what would be a beautiful new addition into our family, things yet again became complicated. Jessie was in hard labor and pushing with no progress for three hours. The turn of events was Baby Bigelow's heart rate dropping at an extremely low rate; consequently, the doctors opted for an emergency c-section. After a nerve racking, nail biting 45 minutes, the Jewell appeared. Her eyes shined as bright as the northern lights. Her face glowed like the morning dawn. She had arrived, Natalie Jewell Bigelow on May 3, 2004 at 12:25 am. The green light from the doctors gave us all hope that she was perfectly healthy in every way. The doctors attested to her having no physical characteristics of downs syndrome whatsoever.

        Natalie Jewell Bigelow or "Jewell Bear" as I call her was the center light force of our family. She had overcome odds of a terrible and potentially life threatening diagnosis. She smiled, laughed, cooed, and grew at an unbelievably normal rate. On occasion, Jessie would notice an unusual look in Natalie's facial expressions. She periodically stuck her tongue out for hours at a time creating a "downs syndrome" look. The pediatrician reassured the Bigelow's that Natalie was "normal", but because of the ultrasound results decided to run the genetic testing for downs syndrome. The life altering results were finally in two weeks later and Natalie Jewell was diagnosed with Mosaic Downs Syndrome. Mosaic Downs Syndrome differs from conventional downs syndrome in that only a portion of her chromosomes are affected with trisomy 21 (downs syndrome). Trisomy 21 is the technical and medical term for downs syndrome. Of the 30 cells tested in Natalie, only 9 were affected with trisomy 21. This diagnosis was an eye opening experience that the Bigelow's never hoped to entertain. The geneticist told the Bigelow's that Natalie at the very least would be mildly retarded. Against all odds, my "Jewell Bear" proved all the doctors wrong thus far. Every test at all her well-baby checks is at or above "normal" levels as compared to children without downs syndrome. Compared to children with downs syndrome, Natalie scored off the charts in highest regard in all aspects. Natalie Jewell has since crawled by 8 months, walked at 10 months, and is currently a talking toddler at 16 months. Natalie is treated as "normal" as possible, but also given every opportunity to learn everything she can. Natalie is enrolled in an early intervention program that encourages and challenges her to learn at her own pace. She has a therapist that comes to the house for weekly visits to make sure that she not only meets, but exceeds her learning potential. She also attends classes once a week at a school for children with special needs. Natalie is a thriving, happy, soft hearted toddler with many mountains to climb.

        The word perseverance is at the top of the Bigelow's family vocabulary, and words that label: for example Mosaic Downs Syndrome, diagnosis, "normal", and handicap are rarely spoken. Natalie was not given a disability, but a gift from god to teach others how to survive the hand they are dealt. My "Jewell Bear" has taught me to think twice before using the word "normal" because she is anything but "normal" and everything but handicapped. People do not realize the time it takes to build up a child with the mindset that every door is open instead of how to open every door. It is amazing how the education of a disease or birth defect can bring a family together to join the fight against the misunderstandings and misconceptions.    

 

Jewells is now 2 ½ years old. She has yet to fall behind in anything; Although her speech needs some help that too is coming along. Every day she seems to speak a new word, we have taught her sign language to help in that area. Oh, and yes she did get an A on this paper!

Wow...told you i posted this some time ago...jewells (jewells = natalie, she gets called all kinds of things! jewell is her middle name, and when i was prego we didnt have a first name for her til she was almost here, so she was referred to as jewells, and it stuck!) anyway...she is now 4.5 years old and in her second year of preschool! shes doing really well...speech is still an issue, and chances are it always will be...but you can finally have a conversation with her, she has almost completely stopped using sign language (thats bittersweet!), she can sing about 90% of a handful of songs, she knows all her colors and shapes, her abcs, counts up to 30...and much much more...altho she knew alot of that before she even went to preschool! she is my living miracle and i thank god every day for her!

This is from a recent visit to one of her fav places...the petting farm!

thanks for reading...hope this finds you well 

Jess =)

Down Syndrome Awareness Part 2!!!

NEW YORK - The National Down Syndrome Society (NDSS) and the Down syndrome community invite the public to celebrate Down Syndrome Awareness Month this October. There will be special opportunities across the country to learn about Down syndrome and to promote acceptance and inclusion of individuals born with this genetic condition.

"People with Down syndrome, like everyone else, are people first, each with their own unique gifts to contribute to their families, friends and communities," said NDSS Chief Operating Officer Jon Colman. "Down Syndrome Awareness Month provides a forum for dispelling stereotypes, providing accurate information, and raising awareness of the potential of individuals with Down syndrome."

Did you know...

One in every 733 babies born in the U.S. has Down syndrome. The life expectancy of people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 56 today. In that same span of time, advancements in education, research and advocacy have had a tremendous impact on the opportunities that individuals with Down syndrome have to live healthy and fulfilling lives. Today, many people with Down syndrome:

• Attend neighborhood schools and learn in typical classes alongside their peers without disabilities.
• Graduate from high school and go to college.
• Comprise a vibrant part of the American workforce.
• Actively participate in the social and recreational aspects of their communities.
• Live independently, make their own choices, and advocate for their rights.

The Buddy Walk

The Down syndrome community has been celebrating Down Syndrome Awareness Month each October since 1981. The Buddy Walk was created by NDSS in 1995 to provide its affiliates and other local groups with a way to promote acceptance and inclusion of individuals with Down syndrome in their communities. The Buddy Walk also raises funds for local and national programs and services to benefit individuals with Down syndrome and their families.

Anyone can participate in this one-mile walk. With more than 250 Buddy Walks taking place in the United States this year - most held in October - there is one near you! Visit www.BuddyWalk.org to see a map of local walks. To learn more about Down syndrome and obtain information to share with others during Down Syndrome Awareness Month, visit our new Web site at www.ndss.org.

About NDSS

The National Down Syndrome Society is a nonprofit organization with more than 200 affiliates nationwide representing the more than 350,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more about NDSS, visit www.ndss.org or call (800) 221-4602.

Down Syndrome Awareness & Save the Ta-Tas :o)

October is a month full of "awareness"....mostly everybody knows that october is breast cancer awareness, but what alot of people might not be "aware" of is that it is also Down Syndrome Awareness month. While breast cancer awareness is important, i can relate more to the down sydrome. So thru out the month ill be posting little things to keep you aware. =)