3/21 Media Appearances

In case you missed the DSAGSL in the media last week…here is a recap:

On Tuesday, 3/18 Megan and Jeremie interviewed on CBS Radio with Mark Reardon. Listen here.

On Wednesday, 3/19 Lindsey interviewed with Radio Disney.  The interview will be aired sometime in April, and we will keep you posted.

On Friday morning, 3/21 Megan and Jeremie appeared on KSDK’s Show Me St. Louis. Click here to watch.

On Friday afternoon, 3/21 Grace, Karrie and Jeremie apeared on KPLR’s Afternoons on 11 with an audience of self-advocates and their family members. Click here to watch.

World Down Syndrome Day – 3.21.14

In case you missed it on Tuesday, Megan and Jeremie interviewed with Mark Reardon from CBS Radio.  Click here to hear the interview.

Lindsey was on Radio Disney on Wednesday.

Megan and Jeremie were on KSDK – Show Me St. Louis this morning.

Stay tuned for all media appearances posted here on the blog once we get our hands on all the media files.

The DSAGSL will also be features on KPLR 11 later today!

HAPPY 2014 WORLD DOWN SYNDROME DAY!

My Gem, Josh – By Mary Ellen Ritchey

Receiving the news…

We did not know that Josh had Down syndrome until he was born. I was 44 when I became pregnant, and I had five miscarriages prior to becoming pregnant with Josh. So, I had some blood work done and that was it. I was afraid to have an amnio for risk of losing the baby. I had several ultra sounds done, and no one saw any markers for Down syndrome. In the back of my mind, I knew I was high risk because of my age.  My doctor told me I was AMA – Advanced Maternal Age (don’t laugh).  I also thought if anything was wrong with this baby that I would have another miscarriage.

I remember those first days in the hospital were the worst. I sent my husband, Terry, home every night to get rest. After he left, I would sob and cry hysterically. I never wanted anyone to see how heartbroken I was. I was so guilt ridden. This was my only child I would ever have! I was so overwhelmed. I thought, “How could God do this to me? Who would take care of this baby when we are gone?” (That worry still haunts me.) I worried he would be alone on holidays and that made me sad! My doctor told me that with my last dying breath, I will be worried about what will become of my child…and I believed him. So, I tried to cope the best I could and went on.

Today…

Writing this now makes me cry. I fell in love with Josh more and more each day after we brought him home. I am so thankful he is in our lives. I would not have met the people I know, served on the DSAGSL Board or experienced the pure love and joy Josh brings us every day! You look at life differently than ever before. The things you value now are not the things you use to value.

I will never have a son who gets arrested for drunk driving or armed robbery, and he won’t be sneaking out in the middle of the night to cause trouble! He won’t do those things typical parents worry about on a daily basis.

World Down Syndrome Day…

World Down Syndrome Day is every day in my house, not just March 21. It is a day that needs to be recognized though. I see more and more people looking at this community and seeing what value they have to offer, but I think there still is a lot more to be done.

How I Make a Difference…

I feel I make a difference every day in this community by volunteering, helping with events and serving on the DSAGSL Board. I do this because of the love I have for my child and other people with Down syndrome. I do feel that some of it is for the acceptance that they still fight for every day. I feel everyone should volunteer or give some of their time if they have a family member with Down syndrome. I think that if you want the world to be a better place for them, you have to help make it that way. DO NOT COUNT ON OTHERS TO DO IT FOR YOU! Someone out there who has never gotten involved before, because they do not think that they would be good at it, may be the missing link to making an event or a program a huge success!

About my Josh…

Josh has the best personality! I will make him laugh, and he will respond with, “Oh, mom.” He has such a fantastic laugh, and his reaction to his dad coming home every day never changes. It is like he has been gone a week. Who wouldn’t want that every day? The small things make him happy. He claps for everyone! I was told parents of people with Down syndrome do not like all kids with Down syndrome being labeled “happy.”  Really? I know it’s not true, but who wouldn’t want a “happy” child.

If I had One Thing to Share…

It would be that in our life at home we celebrate every day, both the big and small accomplishments. Our life is so full because of Josh. I truly feel he has made me and my husband better people. With that said, this world could use a child with Down syndrome in every family. Just think how much better the human race would treat each other!

Departing Holland – by Deborah Leigh Norman

When my second son was born two months early and later diagnosed with Down syndrome, somewhere in the flurry of reading I consumed, I came across the poem “Welcome to Holland” by Emily Perl Kingsley. Ms. Kingsley describes having a child with a disability like going on a trip to Italy but instead you land in Holland.  In my state of confusion and numbness the words from Ms. Kingsley helped to give a framework to my feelings and much of my mind racing.

The hardest part for me was thinking about what this new member of our family would mean to my first son, then just three years old. I had a mix of fear and guilt for what my older son may have to deal with and for how his life would be negatively impacted. I knew that my husband and I would handle things; we were adults. But for my young son who had no choice in having a sibling enter his life, how would having a new brother and now a brother with a disability affect him?

Perhaps part of these feelings was the guilt that any parent may go through when they have a second child. The first child’s life was going along just fine – did they really want or need a sibling? Most parents probably justify the new addition by thinking that even though the adjustment is hard at first, that the older child will be better off because the child will now have someone to share life with and, hopefully, have a lifelong friend even after the parents have died. However, when we found out our son has Down syndrome I wondered would he be able to share life with his big brother and be a friend and confidant?  What did this mean for our family?  I had a bright, curious, beautiful son – clearly in Italy, and now I had a son unexpectedly in Holland. How could I be two moms in two different countries, speaking two different languages?

I ventured into this new place and met some helpful moms and developmental therapists. I did not have answers to many questions but, like Holland, having a child with Down syndrome was turning out to be a welcoming and fine place.  Holland is beautiful with remarkable architecture including the Canal district. This land of windmills evokes peace and serenity. Holland is one of the world’s largest producers of flowers. Just the Keukenhof Gardens alone has seven million bulbs planted annually. The amazing museums such as the Anne Frank House are inspiring. Vincent Van Gogh lived in Amsterdam at one point in his life, and the Van Gogh Museum permanent collection has over 200 of his works.

I understood landing in Italy from my experience with my first son.  Italy also has some incredible sites. Pompeii, the Pantheon, the Leaning Tower of Pisa, and the island of Sicily all offer history, scenery, and unique styles. No wonder Italy is one of the top five countries visited around the world with over 40 million visitors annually.

Somewhere along the way, however, I realized and, more importantly, I decided that I didn’t have to stay in Holland or in Italy for that matter and I did not have to choose to blindly travel back and forth the 850 miles between the two countries. The rest of the world is pretty incredible too.  I am one mother of two sons and we are connected. Like the Mississippi River a few miles from our house, we as a family flow through life together on all of its twists and turns sometimes quickly and sometimes meandering.

I have learned best from watching my two sons together. I see that my greatest worry – for my son having a brother with Down syndrome – has turned into the best gift in life and that his little brother has taught him things I never could. They share an amazing connection that continues to astonish me. I see the understanding, devotion and joy that they have most strongly for each other. They have showed me we speak the same language of love and that we will not be kept in separate places.

I have wondered why I feel differently than Ms. Kingsley and I believe it is because of her. Since she and many other parents worked for better opportunities for their child with a disability, there is more inclusion and acceptance.  Her work and words had a positive influence on so many people.

Through time and travel, I am learning on this journey and I look forward with excitement and anticipation to where it leads instead of feeling like it is already defined by a diagnosis.  In addition to Italy and Holland, I look forward to traveling to Shanghai, the Amazon rainforest, Paris, the Serengeti, and much more.

© 2013 by Deborah Leigh Norman.  All rights reserved.

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