October - Down syndrome awareness month!!

It seems every month there is a national awareness month - but actually every month there are many valuable causes hoping for greater awareness in their communities and around the country. Well, October is Down syndrome awareness month. I had originally intended this post to be family update and get more pictures posted - but I think I will do that later this weekend. Today I want to share with you our family experience with Down syndrome and some amazing links I hope you will check out.

This December will be three years since we got the call letting us know Peter had DS. But to understand the influence on our lives we much go back to the start. Growing up I culturally would hear the term "The children pay for the sins of the parents" - so you can imagine where my natural reaction to guilt comes from. I didn't know or see people with disabilities. When we travelled and I saw a disabled individual I was uncomfortable - the child in me wanted to look and understand, but the other grown up side would say "don't stare". At 16 I had graduated high school, and went off to a two year boarding school in the UK. As part of the program we were to enroll and support a community service program. One such program supported disabled and troubled youth in the community. Guess what - it didn't even make my consideration. I admired the folks involved in that program but "it wasn't for me". Jump to 1995..... young married couple. We have one beautiful and healthy child. We thought we were done - our world was going to revolve around her and only her. Sitting on the living room floor of our 2 bedroom apartment - John at work and Alexandra had just fallen asleep for a nap. The TV was on in the background and I was pulled in to something playing around the Special Olympics. I just watched. It made no sense - in my heart I felt something familiar, I watched the families cheering on as these awkward kids with big smiles ran around the track. I felt like it was me but it made no sense. I figured maybe one day Alexandra and I would volunteer.... that moment was written in my heart and at times it would pop back up and I would wonder what about that small period of time made such an impression.

Fast forward to December 2006. We knew the odds and were waiting for the results of the amnio. I had taken the day off work after a doctor appointment and decided to run over to the mall. I needed a distraction. That TV program on Special Olympics kept coming back up in my mind - was that truly my fate? Then I see two young adult boys with DS walking and laughing through Old Navy. With them two very attractive blonde teenage girls. Hmmmm.....what??!! My motherly instinct kicked in - surely these girls were talking advantage of these boys somehow - getting them to buy them stuff? That was not going to happen under my watch. So waddling behind at a distance I kept a close watch - let's face it, pregnant women don't exactly make the best candidates for undercover work. I listened - and then I realized these young girls were mentors. These boys were shopping for their families. And together the four of them were having fun and laughing. What a long way from the days I was that age and didn't know a face with DS from any other face of disability.

Then the call - yes, baby is another boy for the Krause family and he has Down syndrome. I told John as we stood in the kitchen. Trying to get our arms around the words and what this meant. We now knew for sure - short of some miracle our fate had been declared. This wasn't something that would change in a week, a month, a year or a few years down the road...... this was our for ever now. This would be a part of our family - change our family. John finally looked at me, eyes moist and said "I used to make fun of people like that when I was a kid - now that is going to be my kid that other people make fun of...." We just stood there. I tried to say all the right things about being in the US, the awareness, the support, etc....but really? Could I believe those words? Would people really understand and support?

The simple and honest answer is No. Reactions were all over the board - from very loving support, to the very often "I'm sorry - how sad", to complete avoidance, to "at least you know early and can have an abortion". Lucky for me the very first person I called was my amazing pediatrician. His reaction? "Alleluiah! Amen Catherine!! I have been praying for your family and this is just the best thing that could happen. It won't always be easy, but I am here and we will get through it together. Your family is truly blessed". WOW!! That was when my little cause of awareness started. I told John - we will set the tone for how the world reacts to Peter - yes, Peter, our son conceived in love. If we loved him, others would learn to love him. If we smile, others will learn to smile. If we encourage and give him opportunities, others will too. We as individuals set the tone for how others will respect (or not) our loved ones every day - but that tone we set is heightened when your child has disabilities - because often we don't know what to say or how to react - and we look to the folks around us to set that tone. That night I wondered - will his heart be healthy enough for him to be an awkward kid with a big smile running around the track as we cheer on? Will we be one of those families, or will I truly just be a volunteer one day. Time will tell.

So I can throw the facts at you on DS - most common chromosome abnormality, happens in 1 of every 800 births, older women are at a higher chance but the average age of a new mom with a baby with DS is in her late 20's, there is a push to screen all babies pre-natally for DS, when there is a pre-natal diagnosis 9 out of 10 pregnancies are "terminated". Children with DS have a much higher chance of leukemia and other medical challenges, 6 out of 10 will have cardiac issues, some will talk - some won't...... but really - how much of that changes the way you look at an individual with DS? These facts give us intellectual awareness. I want us all to also have a "heart awareness". These individuals are as unique as you and I - they have their own interests and desires, they have their own strengths and weaknesses. They laugh and love more than you and I - but they also can feel sad, mad or down right stubborn. The color of their skin, eyes and hair will be like there families - it isn't determined by DS. Their shorter stature, lower muscle tone and almond shaped eyes unites them together. Why? I think it is God's way of showing us who they are so that we can learn and appreciate.

I know I have many, many, many more years ahead of me - and in those years additional challenges and frustrations will come up - as well as opportunities to rejoice and celebrate. Peter has blessed our family for almost three years now with the knowledge of his specialness and I don't pretend to have the knowledge and experiences that come to those with older children or adults. There is much more for us to learn and experience. So here (after a lot of babbling) is what I want to share with you for heart awareness of Down syndrome - this is what I have learned from my little boy and how he has changed our family..... Life isn't fair, but I still need to appreciate what I have...this one is hard!! Life can be hard and painful, but I shouldn't give up.... only imagine recovery from open heart surgery. Things can be hard to learn, but it is ok to ask for help...... we can all reach up our hand and ask for someone to hold it as we learn to walk our journey. When we feel down and want a hug, all we really need to do is open our arms and someone will fill the space.... and going along with that - short of saving a life - nothing is more important than to fill that space when someone is opening themselves up for a hug. When in doubt smile.... isn't it better to have someone smile back than frown back at you? If you try something you may fail, and fail, and fail again..... but true failure comes from never trying. There is no such thing as perfect - only perfectly you. If you truly want to make the world a better place - simplify your life - if we focus on loving, serving and embracing those around us how can we not make it better? Simply put - the world is our mirror - what we see is what we are...... Peter reminds us every day how special it feels to get a smile and a hug. He has taught us that things don't come easy - but we need to keep trying. We have learned that we are all imperfect - some on the outside, some on the inside - but we must continue to strive to be the best we can be.

Here is how our children have been changed - Alexandra wants to pursue physical therapy and work with children with special needs. She wants to marry a special man who will support her in adopting a child (or more) with DS from other countries and give them love and opportunity. Michael understands different and is proud of it. He takes pride in taking Peter out and introducing him to the world - and loves Peter the most because he knows Peter loves him just the way he is.... he too hopes to one day have a child with DS. Jack has learned that being the big brother means helping and encouraging - he has learned that a big smile, a huge hug and a lot of excitement can encourage people to do what they didn't think was possible - he is crazy loud, but full of love. His teacher just told us yesterday how during class sessions with the counselor Jack was the only child that could read people's emotions and needs by looking at their body language - and he responds with compassion. Tommy knows no world without Peter, and therefore sees Peter as anyone else in the family. It is with those eyes that he sees the world - just as the world if full of differently abled people, so is our family - so that is typical. Gretchen Anne will also not know a world without Peter - and I believe she will be blessed with a best friend who will love and encourage her as much as she will him.

I hope you will take the time to check out some of these other links. The first is a song I found by accident that I found truly wonderful. This is a youtube video/song called "God doesn't make mistakes"

http://www.youtube.com/watch?v=NfuaNhXI1Ao&NR=1

For those of you football fans out there - you likely remember coach Stallings - mostly from his amazing success as a college coach. His only son (Johnny) had DS. He passed away not long ago. Coach Stallings wrote a book about the fears, challenges and eventual joy that came from his son. The link below is an interview he gave on his son Johnny and the impact on his coaching.

http://www.youtube.com/watch?v=9uUVez3kNcI

For those of you that are considering expanding your family I want to throw out a non-traditional thought. There are many children around the world with DS that are not as blessed as our Peter. They are left in orphanages and around age four are often moved to institutions where there life is significantly shortened by lack of care. One woman named Andrea has made it her mission to help these children find families. Single handedly she has helped hundreds of children find families to love and care for them. She is truly changing the world one child at a time. Below is a video she put together about her mission. Even if you aren't considering another child in your future, I hope you would consider a Christmas time donation to this organization that financially makes it possible for families to adopt a child with DS.

http://www.onetruemedia.com/otm_site/view_shared?p=9b08ab7214bb71b4b33e33&skin_id=1602&utm_source=otm&utm_medium=text_url

I do want to thank you - all of you - who continue to come and read our blog for your support and love and compassion. We are proud of all of our kids - and we obviously are very proud of Peter. I really do hope that traveling this road with us now has also brought you awareness on DS and the blessings we can obtain in life by embracing those that may seem most different from us.

Love,
catherine

Peter doing art on his new easel (thank you craigslist!)


Peter helping assemble the new train set - yes it is for therapy - keeps him on his feet, moving and stretching and coordinating fine motor for train movement. (thank you sale at Toys R Us)

Standing, stretching and putting dice in a cup....Disney Yatzee (thank you Tommy's friend for a fun birthday present)

Therapy on a tablet learning to draw lines (thank you Ms. Katie and fun games put together by the Air Force Academy to help special kids).

Thank you for Peter for sharing the joy you find in your efforts and accomplishments - we all celebrate those with you!