Friday, March 30, 2012
Attack of the Daddy!
I can't believe that we are coming up on a year already.... She is growing up too fast!
Wednesday, March 28, 2012
Wednesday, March 21, 2012
World Down Syndrome Day
Today is World Down Syndrome Day. Today we celebrate our precious baby girl who has an extra chromosome. Just one little extra chromosome that has changed all of our lives.
Down Syndrome is overwhelming love, beauty, sweet little baby giggles, silly monster voices, the best baby kisses in the world, and the sweetest snuggles I have ever experienced. My daughter has Down Syndrome and I love her with all of my heart. 
Today we celebrate you Taylor. You have impacted so many lives and changed mine for the better. I promise to do everything in power to make you feel happy and loved and to show you that the world is full of amazing things and amazing people. I promise to change people’s perception of Down Syndrome, and show them that it is not sad and lonely. That it is love. Pure, overwhelming, and all encompassing love.
One year ago today I was working at Junior Achievement, prepping my boss, Barbara, and an intern for my maternity leave and had an orientation with a new volunteer later in the afternoon. I did not have one thought of Down Syndrome. I had actually denied having the testing done because Brian and I decided that what happens, happens and we were not going to spend the pregnancy filled with anxiety. I remember thinking that it won’t be an issue for us anyways so why even bother with the test. Our ultrasounds did not show anything, my pregnancy was ridiculously easy and I was feeling great besides not being able to sleep on my stomach.
One year ago, if you would have asked me what Down Syndrome meant I would have said things like, sad and lonely, and different. I would not be able to relate. Today, on March 21st, Down Syndrome is so much more.
Down Syndrome is overwhelming love, beauty, sweet little baby giggles, silly monster voices, the best baby kisses in the world, and the sweetest snuggles I have ever experienced. My daughter has Down Syndrome and I love her with all of my heart. Today we celebrate you Taylor. You have impacted so many lives and changed mine for the better. I promise to do everything in power to make you feel happy and loved and to show you that the world is full of amazing things and amazing people. I promise to change people’s perception of Down Syndrome, and show them that it is not sad and lonely. That it is love. Pure, overwhelming, and all encompassing love.
Friday, March 16, 2012
Why We Must Fight
As many of you know, I am a data fiend. I do everything I can to seek out knowledge and facts to support my own opinions. Kelly, above all, knows how much I like being right!
I applied this same tactic immediately after I heard the doctors say they thought Taylor has Down Syndrome. I had not yet even held Taylor before I was on my phone trying to find anything I could about Down Syndrome, trying to understand how those few words will change our lives forever.
That search and learning process continues, and will keep going my entire life. Throughout this process I have come across everything from medical documents, both modern and severely outdated, to personal accounts of family members or individuals with Down Syndrome, both very positive and very dark. I read, listen to, watch and question everything I can.
One of the things I have noticed, mainly on personal accounts such as blogs or comment sections of articles, is the accusations of some people towards the people that are writing blogs, that they are only talking about the positives of their lives. Somehow selling out, or being in denial, by not mentioning the struggles that can come with raising someone/living with Down Syndrome. I do feel that many people only want to report on the most positive aspects of their life. Would you want your darkest parts of your life made public for all to see? However, I also believe that it is our job as parents of children with disabilities to help educate others about what we are going through and be advocates for our children.
I know Kelly and I are very upbeat on this blog and we will continue to be. This is not because we are part of a large conspiracy to convince the world that having a child with Down Syndrome is the easiest thing we have ever done and that there will never be any struggles or difficult times we will face. We will be upbeat and positive because that is how we are raising our child. We will share our struggles with our family and friends, and a lot of them will be aired here.
One of the other things I have noticed when reading about or interacting with the families of those with disabilities is that a lot of them always seem ready for a fight. They have a tenacity, a fire, that you can recognize immediately as not anger, but as an intensity that cannot be ignored. I think a lot of people see this as being uptight, or over stressed, which can make them feel uncomfortable around them. I think it is something else entirely. I think it is the choice to fight for things that were previously thought to be basic rights for our children. I think it is a readiness to go toe to toe to ensure that our children get the best shot at life they can.
If you tie this intensity with the fact that many people only hear the positives from the families they know with children that have disabilities, a lot of people wonder why we need to fight.
There has been a story in the news the last several weeks about a family in Oregon that has a little girl, a few years old, that has Down Syndrome. They were just awarded over 2 million dollars after they sued for a "Wrongful Birth" because the doctors that did prenatal testing made a mistake on the test and missed the fact that she had Down Syndrome. This case has sparked a wild fire in our community, with people on both sides of the argument. I have been following it through a group I am part of consisting of parents of children with Down Syndrome, so everything has been respectful of the children, even when they are not on the same side of the argument.
This morning, however, I followed a link out to a newspaper that was covering this story. I had to stop reading the comments after only a few minutes. As hurt, disgusted, angered, and sick I feel at some of the comments that people left it only reminded me of why we need to continue to fight.
I thank God that our family and friends are as understanding and supportive as they are.
I also ask God for the strength, patience and wisdom to fight those that are not.
- Brian
I applied this same tactic immediately after I heard the doctors say they thought Taylor has Down Syndrome. I had not yet even held Taylor before I was on my phone trying to find anything I could about Down Syndrome, trying to understand how those few words will change our lives forever.
That search and learning process continues, and will keep going my entire life. Throughout this process I have come across everything from medical documents, both modern and severely outdated, to personal accounts of family members or individuals with Down Syndrome, both very positive and very dark. I read, listen to, watch and question everything I can.
One of the things I have noticed, mainly on personal accounts such as blogs or comment sections of articles, is the accusations of some people towards the people that are writing blogs, that they are only talking about the positives of their lives. Somehow selling out, or being in denial, by not mentioning the struggles that can come with raising someone/living with Down Syndrome. I do feel that many people only want to report on the most positive aspects of their life. Would you want your darkest parts of your life made public for all to see? However, I also believe that it is our job as parents of children with disabilities to help educate others about what we are going through and be advocates for our children.
I know Kelly and I are very upbeat on this blog and we will continue to be. This is not because we are part of a large conspiracy to convince the world that having a child with Down Syndrome is the easiest thing we have ever done and that there will never be any struggles or difficult times we will face. We will be upbeat and positive because that is how we are raising our child. We will share our struggles with our family and friends, and a lot of them will be aired here.
One of the other things I have noticed when reading about or interacting with the families of those with disabilities is that a lot of them always seem ready for a fight. They have a tenacity, a fire, that you can recognize immediately as not anger, but as an intensity that cannot be ignored. I think a lot of people see this as being uptight, or over stressed, which can make them feel uncomfortable around them. I think it is something else entirely. I think it is the choice to fight for things that were previously thought to be basic rights for our children. I think it is a readiness to go toe to toe to ensure that our children get the best shot at life they can.
If you tie this intensity with the fact that many people only hear the positives from the families they know with children that have disabilities, a lot of people wonder why we need to fight.
There has been a story in the news the last several weeks about a family in Oregon that has a little girl, a few years old, that has Down Syndrome. They were just awarded over 2 million dollars after they sued for a "Wrongful Birth" because the doctors that did prenatal testing made a mistake on the test and missed the fact that she had Down Syndrome. This case has sparked a wild fire in our community, with people on both sides of the argument. I have been following it through a group I am part of consisting of parents of children with Down Syndrome, so everything has been respectful of the children, even when they are not on the same side of the argument.
This morning, however, I followed a link out to a newspaper that was covering this story. I had to stop reading the comments after only a few minutes. As hurt, disgusted, angered, and sick I feel at some of the comments that people left it only reminded me of why we need to continue to fight.
I thank God that our family and friends are as understanding and supportive as they are.
I also ask God for the strength, patience and wisdom to fight those that are not.
- Brian
Wednesday, March 14, 2012
DSAW - Awareness Walk Invitation
Kelly and I are excited to invite you all to join our team for the Down Syndrome Association of Wisconsin Awareness walk at the Milwaukee Zoo this September 30th!
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. If you are unable to join us for the walk, donations are also greatly appreciated.
The walk details are as follows:
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. We place priority on support and education, delivering quality programs and services, and maximizing available resources. Please join us for a family-friendly, fun-filled day! 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
10:30am-12:55pm Registration, Lunch and Pre-Walk Activities
Food, DJ, Crafts, 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
Tuesday, March 13, 2012
Friday, March 9, 2012
World Down Syndrome Day - March 21st
World Down Syndrome Awareness day is the 21st of this month. Here is what other parents have to say....
Monday, March 5, 2012
Busy Busy!
I can't believe that Taylor is 10 months old already! One of the things that people always tell you before you have kids is how fast time will go by and to enjoy and cherish every stage they are in. But this is crazy!
Taylor continues to progress well with her physical/occupational therapy. She has also found a love of being mobile. Gone are the days of setting her down for 20 minutes and letting her do some tummy time on her play mat. Now we have to put her down on one side of the room, watch her roll away from us (she really likes rolling to her right), then when she gets to the other side of the room, flip her around so she can roll back! We keep teasing her with toys and working with her to get her to crawl forward. She has all of the individual components down, just needs to piece them all together. We have been able to coax her to roll back to her left recently, which saves us a trip across the room :)
Everything else is going very well. She continues to try some wonderfully creative food combinations that Kelly comes up with and loves just about everything. We are starting to get into the realm of self feeding. She is really getting the hang of grabbing her puffs or shredded cheese off her tray and getting most of it in her mouth! Because of all of this she is still growing like a weed. Most of the time she has to wear 12mo pants because her legs are so long.
Kelly and I are keeping plenty busy as well. Kelly begins her new job at Goodwill today. She will be in charge of grant writing for southern Wisconsin and northern Illinois. She is also on the committee to help plan our Down Syndrome Awareness walk at the zoo this fall. I have also become more active in our local D.A.D.S. (Dads Appreciating Down Syndrome) group. We are having our first fundraiser of the year next month in the form of a Comedy Sportz event. We will also help out with the DSAW brewer game later this summer.
We will be putting together a team for our walk this year. More information to come!
That's it for now. Hope everyone is doing well!
Thursday, March 1, 2012
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