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!

Fall Happenings 2012

Taylor and Daddy

Taylor telling her toys to behave themselves

The Puppy Dog

Crazy Hair

Behold!

The crazy haired baby! 

Taylor's hair is a beautiful strawbery blonde color that has a hint of the curls that are coming. She also has the fluffiest (there is no other way to describe it!) most out of control hair I have every seen!

Beware of the sweet little flower clip or pastel pink ponyail holder, for it shall be flung at you after Taylor pulls it out of her hair!

Here it is!!!

Almost Famous

Taylor is becoming quite the famous little girl! All of the members of the Down Syndrome Association of Wisconsin will be receiving an invitation to the walk in September this week.

The cover of the invitation happens to have a picture of the CUTEST BABY IN THE WORLD! That baby would be Taylor of course! She will be giving out autographs left and right!

And then it hit me

And then it hit me

It seems for the last year and a half my life has been one challenge, accomplishment, change, celebration, setback and “learning opportunity” after another. I think for much of this time, that is how I have been operating as well. Taking things as they come, doing what I can and then moving on to the next. There have been some definite ups and downs all the while experiencing extreme versions of every conceivable emotion, fighting the urge to shut them down completely and just focus on tasks (I do this when stressed or overwhelmed).

And then it hit me last night. I am not sure what happened or why, but it was like a veil was removed from my eyes. Nothing about my life changed, just my viewpoint. My realization?

I truly and honestly love my life.

I have been so caught up in my daily actions, thoughts and plans, that I haven’t taken a step back to just breathe in far too long. I am glad I did last night. All the work, planning, worrying, happiness, pride, fear and uncertainties are all still there. But that is life. I am so blessed that when these moments of clarity do surface, my conclusion is that I do indeed still love my life. That is all a person can ask for.

Thank you to all of you that are a part of my life. It wouldn’t be the same without all of you. 

Summer update

Wow has this summer been going by quickly, and it is not going to slow down until sometime in October!

We have been busy trying to fit in all the activities we want to do over the summer, all the while trying to stay cool. It has been very hot up here, sometimes hitting record breaking temperatures.

Taylor has been very busy as well. She is making great strides in her physical therapy, it seems like every day she makes a noticeable advancement. She is so very close to crawling it is both exciting and terrifying (this weekend we will be buying more baby gates!). She is also making strides towards walking (pun intended) by standing with very little assistance. She is slowly getting over her previous aversion to having weight on her feet; because of this she has “rediscovered” her jumper!

She has also officially cut her first tooth, with a second one close behind it. She continues to discover new foods through us feeding her off our plates. There seems to be very few foods she doesn’t like, I think she gets this from her father.

Taylor has also been in swimming classes every Saturday for the last 6 weeks. She is a natural in the water! I truly believe that this is one of the reasons we have been seeing such advances in her gross motor skills this last month or so. The other reason she has been advancing is due to doubling up her therapy sessions; we have one every other week now!

Taylor has also discovered a new talent. This one she most definitely gets from her mother. Taylor loves to sing! She started out by copying a song that Kelly has been singing to her since she was born. Now she will start singing this song (the words are all various forms of “da”) on her own and starting to come up with her own. This is a huge deal because it further confirms what we have known all along, Taylor will be verbal. With this in mind we are getting more into learning and teaching her baby sign language. We know she is already trying to communicate with us, she just can’t use words yet. She is already full of gestures and different sounds when she wants something. We have been doing our best to decipher these while encouraging her to learn the signs for common messages. The goal is to increase the level of 2-way communication between us. As she starts to communicate more consistently she will start dropping the signs and using more and more words.

 All of this has kept us plenty busy with much more to do!

We hope you all are enjoying your summer as much as we are.

Back to School

Last night I came home from work and on the kitchen table was an envelope from the University of Wisconsin - Whitewater. In June I had sent in my application to go back to school and finally finish my Bachelors Degree 11 years after I left Whitewater.

I left Whitewater right after my junior year to pursue a Meeting and Event Management Associates Degree at MATC and loved every second of it. I always knew that I would want to finish my Bachelor's Degree since I was so close to it that I could pretty much reach out and grab it.

On the application it said that I had to write a statement of how my presence will enrich the school's community. I spent a lunch hour thinking about what I could write.

Here is what I sent in:

"I am thirty years old and am a wife, a mother, a daughter, a sister and a friend. I am defined by all of these titles but most importantly by one.

I am a mother to a one year old girl named Taylor. Taylor has strawberry blond hair, striking blue eyes, a light twinkling laugh and Down Syndrome. She has defined who I am more than any other aspect of my life. My husband, Brian, and I did not know that Taylor had Down Syndrome until she was born and the nurse told us what they suspected. We both went through the shock, grief and the pain, but out of all of that came something wonderful.

Taylor has made me both grow up and learn to live life fully. I have had to learn about Down Syndrome and the devastating statistics that come along with that knowledge. I now have to worry about life expectancy, developmental delays, inclusion and so much more. I am a mini expert in the field of Down Syndrome and am learning more all the time. I have joined support groups that help get out frustrations and more importantly celebrate milestones.

Taylor has taught me to live a life full of celebrations and encouragement and excitement. You have never seen a happier mother until you saw me celebrate when my daughter sat up on her own.  Sure it might take her longer to learn to crawl, walk and talk, but she will do it. She will crawl, she will walk and if she is anything like me, she will talk. And we will celebrate loudly.

I will bring a presence of knowledge, compassion and celebration of life to UW-Whitewater because that is what my one year old daughter taught me."

So last night I opened the letter and it started with "Congratulations and welcome to UW- Whitewater!" I am pretty sure my statement is what got me in!

Papa Rich

Silly grandpa! You can't eat my foot! I need it to grab my toys with instead of my hands!

Walk For Taylor!

Did you know that the Down Syndrome Association of Wisconsin (DSAW) hosts an awareness walk every fall at the Milwaukee Zoo?

In April of last year my daughter, Taylor, was born with an extra 21st chromosome that causes Down Syndrome. After receiving the diagnosis one of the first things we did was reach out and try to connect with other people that could understand what we were going through and teach us what we needed to know. It was through this search we found DSAW.

The Awareness Walk is designed to help raise funds, AND to help raise awareness and promote inclusion, diversity and acceptance of Down Syndrome, as well as strive to guarantee access to a full life for all individuals with Down syndrome, their families and friends.

DSAW has been, and will continue to be, an unbelievable resource for us. This walk is their major fundraiser for the year. Please help us show our appreciation by joining us!

We are putting together a team called Taylor’s Wild Ones in honor of my daughter. If you are unable to join us for the walk, donations are also greatly appreciated.

Join our team "Taylor's Wild Ones" by clicking the "Join Now" button here

You can also Donate to our team here

The event details are as follows:

Register by Friday, September 7, 2012 to be guaranteed a T-shirt!

Walk Details

Sunday, September 30 at the Milwaukee County Zoo

Registration and Check-In starts at 10:30am at the Maple Grove and Oak Grove picnic areas. Your registration includes zoo admission and parking!

10:30am-12:55pm Registration, Lunch and Pre-Walk Activities

Food, DJ, Crafts, Temporary Tattoos and Face Painting, Raffles and Silent Auctions, Resource Tent, visits from your favorite mascots and much more!

1:00 Pre-Walk Rally and Awards Ceremony

Led by the Down Syndrome Awareness Walk Master of Ceremonies, Vince Vitrano, Today's TMJ4 Morning News Anchor

1:15pm Walk Begins 

Approximately 1.5 mile leisurely stroll through the Milwaukee County Zoo.