Happy World Down Syndrome Day!

Today is World Down Syndrome Day!! Today we celebrate Taylor for all her amazing accomplishments and we look forward to achieving all of her goals and dreams!

I wish I could go back to those moments when Taylor was born and whisper in my ear about all of the love, joy, and laughter that is to come. I wish I could wipe away my tears while showing pictures of how much Taylor will look like her daddy. I wish I could hold my hand and say quietly how we would never change this for the world.

Taylor has made me, and Brian, different people. I am not the person you knew before I had Taylor. I love stronger, care deeper, and I have Taylor to thank for all of that. Take a couple of minutes to watch this video today. It says it all.

http://saatchi.com/en-us/news/dear-future-mom/#play-video

World Down Syndrome Day - 2014

It is that time of year again!

I can't believe that this Friday is World Down Syndrome Day again. Time has just been flying by, as you may have been able to tell since it has been SO LONG since our last post.

Things are going really well with Taylor lately. She has been a very happy, healthy girl since we had her adenoids removed almost a year ago now. The days of her having chronic sinus infections look like they are behind us! This has really made a difference in other areas as well. Since she is not always sick now we have seen great improvements in her development!

Taylor continues to be the light of the room everywhere we go, and will let you hear of it if you do not pay attention to her!

Taylor also got her orthotic inserts several weeks ago as we continue to work with her on her walking.

Because believe it or not - Taylor will start going to school in April (getting on a bus and everything!).....

So right now we are mainly focused on finishing with our birth-to-three program before she transitions being under the care of the school district. As soon as she turns three she will be receiving her therapies through the school district during the day at school.

But don't let that fool you - We have been able to fit in some wonderful family time, bowling, walks and wonderful times with friends!

Taylor Has Style!

Loving the water!

Adorableness

Some Friday cuteness!

Non-Invasive Prenatal Screening – What’s the big deal?

I came across this article today. This is something I have thought about quite often over the last 2 years and wanted to share some of them. 

From the outside looking in, Non-Invasive Prenatal Screening seems like the next logical advancement in healthcare technology. There have been ways to screen babies in the womb for quite some time now, however we can now do this with little to no risk to the mother. Because of the low risk many doctors are recommending or requiring mothers to get screened during the first stages of their pregnancy. The most common things that the screen tests for is the presence of trisomy (a third copy of a chromosome). Trisomy 21 is the proper term for Down syndrome, as it is caused by a 3^rd copy of the 21^st chromosome.

This is where things go from logical to severely emotional and ethical because humans have to pick up where the science and technology stops.

When a mother gets a prenatal diagnosis that the child they are carrying potentially has one of these syndromes they are presented with a choice. Continue with the pregnancy or terminate. In the US, when presented with a prenatal diagnosis of Down syndromeroughly 75-80% of mothers, on average, decided to terminate their child, thosenumbers only increase when looking at the rest of the world.

Some of this is due to outdated information that the doctors are providing or that can be found online about the kind of expectations you can, and should have for a person with Down syndrome. But there are wonderful organizations out there that work so very hard every day to fight those stereotypes and educate families and their doctors.

So what else could it be?

I think we all have ourselves to blame. After you get married people start asking “when are you going to have kids?”. Telling you that it is the best thing that has ever happened to them and start sharing some of the joyous moments. As Americans we are expected to grow up and chase the American Dream. Own a house, take care of your yard and raise a perfect family complete with mischievous little boys and adorable little girls. Then as parents it is our job to turn that little boy into a driven successful young man; and raise a strong, independent, successful young woman.

From the moment that you decide you are “ready” to have children (I don’t think any of us are ever truly ready!) you start dreaming about what kind of life they may have, all of the things that you will do together and who they will grow up to be.

Getting that diagnosis is life altering. I can’t speak to what it is like to get a prenatal diagnosis, but I can still feel what it was like when we got Taylor’s diagnosis. At first, you think all of your hopes and dreams for your child are forever gone. That can rock you to your core. After we got the official diagnosis when Taylor’s blood work came back, we too were given an option. One of the first things that the Geneticist (the one that came in to give us the official diagnosis) talked to us about is adoption agencies that specialize in placing children with Down syndrome in homes. We didn’t ask for this information. It was offered because the assumption is that people do not want these children. It wasn’t until we said we were not interested in giving our child away that they started talking about what kind of future she could have, and who we can reach out to for help and guidance.

So what’s the big deal? These are children. Selected termination of a child due to a prenatal diagnosis is genocide. Regardless if you are pro-life or pro-choice. If your decision is based on the genetic makeup of your child it is genocide.

These children will grow up. They will have hopes and dreams of their own. They will go on to accomplish their goals and live full, wonderful lives. Who are we to deny that because things may be harder on us as parents?

 Part of their lives will be tough, unfair and they may feel the sting of stereotypes. How is that different than your life?

What we realized after receiving Taylors diagnosis is that our dreams for her did not cease to exist, they just needed to be shifted. We remembered that it is about Taylor’s hopes and dreams, not ours.

Raising my children will be my greatest accomplishment and contribution to this world. That would have been true even if Taylor did not have Down syndrome. I would not wish that anyone be put into a situation where you feel pressure to terminate your child. May God be with those faced with that in the future.  

A quick update!

Hello again!
I am guessing many of you have wondered where we have been and what we have been up to since it has been awhile since our last blog post. We haven't meant to be so quite on our little blog, but Taylor has kept us busy!

Our crazy little toddler has been keeping us on our toes with all of her news skills. Taylor is climbing up the first two steps of our stairs, crawling around the house like a maniac, tormenting Erwin, and signing up a storm! She has start to sign to us without us prompting her, so now we know if she is tired, hungry or wants more of something. It is pretty awesome!

Yesterday was World Down Syndrome Day and we celebrated Taylor with style! Brian had a fundraiser at work for his D.A.D.S. group (Dads Appreciating Down Syndrome) and raised just over $1,000. Then after work we had a pizza party with friends and Taylor knew she was the center of attention. Life is good and Taylor is amazing!

Bath time

Taylor is patiently waiting for her bath to fill up!

Perfect Fall Day

Does fall get any better than this?

Heading to Missouri

We are on the plain headed to Missouri for the First Down for Down syndrome awareness!

October Love

October has already brought so many things to our family! The DSAW Awareness walk happened (okay it was Sept. 30^th, but close enough) and we should get a post with pictures up from it this weekend!

We also did away with baby bottles. Taylor has been using a sippy during the day and then right before bed having a bottle. The first night was rough and full of tears but in the end the sippy cup won the battle! She hasn’t used a baby bottle since and is even transitioning from a traditional sippy cup to one with a straw. Her physical therapist wants her to use the straw sippy cup as part of her speech therapy since it uses more muscles to drink from the straw.

We stopped feeding Taylor baby food the same weekend. I have always made all her baby food myself and the past couple months I have made it extremely chunky so she was already used to having to chew her food. Taylor has moved on to finger foods and loves it. So does Erwin by the way! He is on constant alert when she is sitting in her highchair waiting for the food that doesn’t make it to her mouth. Taylor’s (and Erwin’s favorite new foods include peanut butter and jelly sandwiches and pancakes.

We will end the month by flying to Missouri to walk at the Kansas City Down Syndrome Awareness Walk at Arrowhead Stadium. (Go Chiefs!) Our friends and family in Missouri have a team for Taylor called Taylor’s Angels!

Last but not least…Did you know that October is Down Syndrome Awareness Month? Well it is and here are 21 things you should know about Down syndrome! Thanks to http://sassysoutherngal.posterous.com/ for letting me borrow her awesome list and adding to it!

1.   Each individual with Down syndrome is unique. (Have you met Taylor? She is pretty awesome and unique!)

2.     Individuals with Down syndrome are not always happy. Many have a sweet disposition but they have the same range of feelings (glad, mad, sad, and happy) as individuals who do not have Down syndrome.  (So very true!)

3.     A 3rd copy of the 21st chromosome causes Down syndrome. 

4.     The medical name for Down syndrome is Trisomy 21.

5.     Down syndrome was given the name “Down” syndrome because Dr. Langdon Down was one of the first researchers to describe the genetic condition. 

6.     In the United States the correct term for Down syndrome is Down with a capital D and syndrome with a lower case s.  The D is capitalized because it is named after the person Dr. Down and that is his proper name.  It is not possessive “Down’s syndrome.”

7.     A person is a person first and has Down syndrome second. Therefore, you never call someone a Down’s child, Down’s person, etc. (This is one of my biggest hot buttons when people call Taylor Downs or say she is a Downs baby. Learn the lingo!)

8.     Down syndrome occurs at conception.

9.     Individuals with Down syndrome did nothing to cause their Down syndrome.

10. You cannot catch Down syndrome. It is not a disease like the common cold.

11. Individuals born with Down syndrome vary in their abilities and related medical issues. 

12. Almost 50 percent of babies born with Down syndrome will have some type of heart issues.  These issues range from very serious requiring surgery to issues that self-correct. (We are so grateful that Taylor was not born with any heart or major health issues.)

13. Another common characteristic of babies with Down syndrome is lower muscle tone.  This may cause them to take longer to sit up, crawl, or walk and may cause them to tire more easily. (But it does make them great at baby yoga!)

14. Individuals with Down syndrome want to have friends and do the same kinds of things that other children/adults their age want to do.

15. With proper supports individuals with Down syndrome can and should be included in general education classrooms and extracurricular activities such as dance, soccer, karate, cheerleading and acting. (Taylor is already in swimming!)

16. Many individuals with Down syndrome are getting married.  (This makes my heart smile.)

17. Individuals with Down syndrome are living independently while others live independently with supports.  Some even own their own homes.

18. It is outdated and disrespectful to say someone with Down syndrome is the “R-word.”  The preferred language is that a person with Down syndrome has an intellectual disability. (Don’t say it. Ever.)

19. Many individuals with Down syndrome and other intellectual disabilities are going to college. (We need to start Taylor’s college fund now!)

20. Individuals with Down syndrome have the same rights as all other people. They have dreams, goals and aspirations.  They deserve to be treated with dignity and respect just like everyone else. 

21. It would be great if you would get to know someone with Down syndrome! (If you have questions about Down syndrome let us know! We would be happy to answer any that we are able to!)

A Blue Rose

I was just forwarded this from my Godmother.

A Blue Rose
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"
"My name is Denny and I'm shopping with my mother," he responded proudly.
"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."
"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"
"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.
"You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?"
Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."
She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE , whichever differences that person may have, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece , nephew or any other family member. What a difference a moment can mean to that person or their family.
From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest up to God!
"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!"

A Thank You to our Friends and Family

As Sunday quickly approaches and we are finishing our preparations for the Awareness walk, I keep stopping to think about the outpouring of love we have seen from our friends and family. From Brian, Taylor and I we truly thank you all from the bottoms of our hearts.

Your encouraging words, steadfast support and love have truly rocked our world.  Where we are today is such a stronger, more confident place than where we were last year at this time.

Because of all of you we have become stronger, more confident, ready to show the world that Down Syndrome is not something to shy away from. It is a 17 month old little girl with crazy hair who sings all the time.

So thank you! Thank you all so very, very much!

The Walk is Sunday!

We are on the home stretch now – The walk is this Sunday!

A little update on where we currently stand:

With the very generous help of our friends, family and Direct Supply, our team is currently in second place for the fundraising competition!

We also have over 100 people registered to walk, which shatters all previous records going back 16 years!

If you would still like to join us (Team Taylor’s Wild One’s), or would like to donate, it is not too late! Pre-registration will be accepted online until Wednesday, after that you can still register the day of the walk. All donations must be in before noon on Wednesday to be counted towards the fundraising competition!

This is the first year that my wife and I have done this walk. When we were talking about our goals we decided that a team of 20 people, raising a total of $2,000 would be outstanding. With all of your help we have shattered both goals. Thank you very much for your support!