Buddy Walk 2010

Photography by Dylan Hollingsworth  http://www.dylanhollingsworthphotography.com/

Buddy Walk 2010

Buddy Walk 2010

 

Emma Bear

I was a cowboy fan at birth too. 

Dad Stuff

I was talkng with someone today about life lessons, and the things my dad said growing up. At the time I thought they were BS , but now after a few years have passed I agree with every single one. I just hope that I can pass those lessons onto my children. just a few thoughts I wanted to share.

• you  are who you run with
• nothing but trouble happens after mindnight
• save your money always

Email from a teacher of Brittany's that touched us

I wanted to share a little story with you. Before the premiere of our
fabulous Shepton Smiles.  These girls have worked so hard all year and
while all of these Smile Cheerleaders are not effected by the same
issues, it was one child born in May of this year, that began the
brainstorming that led to the creation of Shepton Smiles.  Her name is
Emma Grace.  She was born to the father and step mother of our former
mascot, Brittany.  Dawn (Emma's mom) experienced a normal pregnancy and
had every test come back as completely fine only to discover in the
delivery room that she had given birth to a child with down syndrom.
This was to say the least, a complete shock to the entire family system.
 But this whole family has embraced this miracle that they were given
and Emma is perfectly precious (I have seen pics, I just want to squeeze
her up).  I sat back and watched with amazement how this 15 year old big
sister embraced this new little girl whole heartedly and I hoped at that
moment more yong adults could demonstarte that amazing showing of
unconditional love.  Along with the exposure the Mandy and I were given
through Oprah of all places, and People magazine we designed, kind of by
the seat of our pants, the Shepton Smiles.  This whole long story was
necessary to tell to get to my next point.  On Sunday November 7 the
Down Symdrome Guild of Dallas will be hosting their annual Buddy Walk.
The Buddy Walk® is an incredible day of celebration with family and
friends to raise awareness, raise funds, and raise the hope of a better
world for all people with Down syndrome.  I am not requiring anyone to
participate, Lord knows we all have tons on our plates, but I would love
to see as many of the girls out there supporting the cause.  I will be
there.  I have copied the link below if you and your family would like
to participate and/or just to donate if you can.   The team name to
register under is Emma's Empire.  Come and join us!   Feel free to ask
any questions of voice a concern as well.  Happy Tuesday!

Facts - Down syndrome

• The Individuals with Disabilities Education Act (IDEA) insures all children with Down syndrome free access to appropriate public education. This act enables all those w/disabilities to have the same public education as typical children. Teachers: Don't underestimate the abilities of your students no matter what..

 

• When you refer to a person with a disability, you always state the person first and then state their disability! NEVER say, "That Down syndrome person," or, "That blind person." We are all humans, first and foremost, whether we have a disability or not. Emma is a person just like you and just like me.  

 

• There are over 400,000 people with Down Syndrome in the United States today. With statistics like these we need to come together as a nation to become more familiar with what Down Syndrome really is.

more coming soon

Sept 15 (day before surgery)

Heart Surgery

Surgery- Sept. 16, 2010 

www.dylanhollingsworthphotography.com

Boston and Emma Best Friends for Life

Something a friend wrote that I loved and stole.

Emma may have Down syndrome but Down syndrome does not have her! October is National Down Syndrome Awareness Month. Let's start it off right by recognizing all the unique individuals with DS that we love and cherish! I love you Emma Grace. You have changed my life forever, in more ways than one. Thank you my sweet angel for your unforgettable smile and love.

Buddy Walk Info.

2010 Down Syndrome Guild of Dallas Buddy Walk: Dawn & Doug Wilson

atl.etapestry.com

Please join the Down Syndrome Guild of Dallas' 10th Annual Buddy Walk! November 7th, 2010. Festivities are from 11a.m.-3p.m. 1 mile Fun Walk begins at 1p.m.

Holland- Italy

Holland is great and we love Holland. Italy is great too and we'll love Italy just the same. ( Poem below)

Emma enjoying life

It's getting pretty close to surgery we're about 2 weeks out. Emma has been very comfortable and continues to gain weight , while her heart is only pumping with 2 chambers. If you pray , feel free to throw a few up for Emma on the Sept 16th.

Down Syndrome Info.

Down syndrome, or Down's syndrome (primarily in the United Kingdom),^[1][2] trisomy 21, or trisomy G, is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The disorder was identified as a chromosome 21 trisomyby Jérôme Lejeune in 1959. The condition is characterized by a combination of major and minor differences in structure. Often Down syndrome is associated with some impairment of cognitive ability and physical growth, and a particular set of facial characteristics. Down syndrome in a fetus can be identified with amniocentesis during pregnancy, or in a baby at birth.

Individuals with Down syndrome tend to have a lower-than-average cognitive ability, often ranging from mild to moderate disabilities. A small number have severe to profound mental disability. The average IQ of children with Down syndrome is around 50, compared to normal children with an IQ of 100.^[3] The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although it is statistically much more common with older mothers. Other factors may also play a role.

Many of the common physical features of Down syndrome may also appear in people with a standard set of chromosomes, including microgenia (an abnormally small chin),^[4] an unusually round face, macroglossia^[5] (protruding or oversized tongue), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures (the separation between the upper and lower eyelids), shorter limbs, a single transverse palmar crease (a single instead of a double crease across one or both palms, also called the Simian crease), poor muscle tone, and a larger than normal space between the big and second toes. Health concerns for individuals with Down syndrome include a higher risk forcongenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.

Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improvequality of life.^[6]

Poem

My face might be different

But my feelings the same

I laugh and I cry

And I take pride in my gains

I was sent here among you

To teach you to love

As god in the heavens

Looks down from above

To him I'm no different

His love knows no bounds

It's those here among you

In cities and towns

That judge me by standards

That man has imparted

But this family I've chosen

Will help me get started

For I'm one of the children

So special and few

That came here to learn

The same lessons as you

That love is acceptance

It must come from the heart

We all have the same purpose

Though not the same start

The Lord gave me life

To live and embrace

And I'll do as you do

But at my own pace.

Author unknown

Poem - changed something in us instantly

Welcome to Holland

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. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's 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 supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, 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's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Emma Grace

This baby is an angel from heaven.  Her little smile and her little blow-out poops come straight from God.  I love to see her face light up when she makes eye contact with me and how she smiles at her parents.  Doug Wilson is an amazing father! 
I am so happy I get to be a part of Emma's life and that God has blessed me with Dawn and Doug's friendship.  More to come.... stay tuned.
Julie Boone

Emma Grace Video

First video editing job for Doug, just a few clips that we wanted to share with the followers..... 

Family Photos

Thanks to a huge favor from a friend the blog has a new and improved layout. Yesterday, we received the pictures taken on Saturday. I have to say they are amazing, it makes me think I should take up photography and try to replicate it daily. Emma is great and is now starting to sleep through the night, which is a great thing. She smiled at me this morning before I left for work, something she just started doing and it sent me out the door with a smile. My wife and I  appreciate all the love and support we've been getting from friends and family.

The Wilson Family......

The Beginning and Brittany...

Today Doug and I took Emma Grace over to a friends house for some Memorial Day festivities.  This is the first time she has really been to visit anyone since her birth due to her heart condition so I was excited and nervous at the same time.  Our friend's Stephen and Pam made sure there weren't a lot of people there so we could do it.  As we were visiting, I realized that Stephen and another friend Bill were the individuals God used to introduce Doug and I in 2004.   He knew then, that through these two men, Doug and I were going to begin our love story and  six years later that would allow Emma Grace to enter the world.  I never realized how beautiful our story really was until recently and now it all makes perfect sense.

Doug and I married June 5, 2009 and I instantly had a beautiful family.  I inherited an amazing teenage daughter named Brittany and the three of us moved to Plano, TX.  I found out I was pregnant in September as Brittany entered her Sophomore year of high school and it was awesome to see how excited she was to have a baby sister. Looking back now, I see how God was preparing us to be Emma's family.  I can clearly see it in Brittany's life.  While many teenagers are trying out for cheerleading and sports, Brittany was applying for the PAL's program at school.  This is a Peer Assistant and Leadership program which provides students with an opportunity to mentor teach and lead other students in the special education programs.  I remember being amazed at her character and feeling honored that God had allowed me to be a part of her life.  She was teaching me and I didn't even know it.  I often think about when Emma Grace was born and how my initial reaction was that of devastation.  Brittany had waited the same ten months I had for her sister to be born.  If she was devastated, she didn't show it. She displayed that she was definitely cut from the same cloth as her father.  It was because of the two of them that I began to see the beauty that was right in front of me.  My heavenly Father had created a beautiful family for me but my selfish pride was blinding me from seeing it.  I couldn't see how truly special Emma really was through the monitors and tests that were being run.  All I could see were Cardiologists and Pediatricians and Heart surgeons and Down Syndrome...at first.

I have had to ask God for forgiveness for being so asleep that first week.  And then, I have had to thank him countlessly for awakening me.  It's amazing what one sees once they're awake...

Church Foreshadowing...

Last night as I prayed in bed, I remembered something that I thought was interesting.  God speaks to us in many ways and sometimes it is in hindsight that we notice.  The Sunday before Emma Grace was born, Doug and I attended a church service with some friends.  In that service the pastor asked in his sermon, "If God called on you today, would you do anything he asked of you?".  Of course Doug and I shook our heads YES in agreement.  From what I can remember the entire congregation did.  Little did I know, that God was calling on us alright and in less than 72 hours our calling would be known.  I don't know if I had known then what I know now that I would have shook my head yes with no reluctance.  It is easy to say that you will do whatever God wants when you think it is going to be the way YOU think it should be.  Let's just say, it is easy to be "okay" with God's will when it fits into your expectations.  I knew I was going to be giving birth to a beautiful baby girl in the coming days and I knew that was a part of "The Plan".  What I didn't know, was "The Plan" was going to look much different than I ever could have imagined.  When I laid eyes on my baby girl for the first time, I knew something wasn't quite the way I thought it should be.  In my head I was thinking "I should be feeling utter happiness right in this moment".  In my heart I knew she had Down Syndrome and I began to panic.  A feeling of complete terror came over me as I looked at her and then looked at my husband.  If it wasn't Down's what was it?  Something wasn't right...or was it?  I hope I can tell the beautiful story of Emma Grace and how she came to us. I will need to start from the beginning but that will have to wait until tomorrow...

New Parent Meeting

Sunday May 23rd Doug and I attended the New Parent Meeting for the Down Syndrome Guild.  It was an opportunity to get some information on DS and meet other parents of children with DS.  As a mother, I was excited to get to meet other parents yet I found myself tearing up as we walked into the room.  Doug, once again was my rock as I walked nervously in and by taking my hand, he let me know that it was going to be okay.  I have to say that it was surreal at first.  As the meeting went on, I began to feel the nearness of God and a sense of calmness came over me.  I realized, I was not alone.  Then, I had the blessing of meeting some mothers and their children.  These kids absolutely stole my heart!  It was in that moment that I knew that Doug and I's purpose was much more than we could have ever imagined.  We have been chosen by God to be a part of an amazing journey.  All children are a blessing and our daughter is certainly that.  In the three weeks that Emma has been on this earth, she has already began to show me things that I would have never otherwise seen...

It's the Simple Things

Aunt Char Char came to visit for the week.  She moved to South Padre a month ago but planned on coming back into town once Emma Grace was born to help out.  Once I saw the hipstamatic iphone app, I had to have it and we literally spent hours taking pictures of Emma.  

Emma Grace Wilson