Part Two Of My IDSC Journey

Some may ask, after all these years, why are you now sharing your journey. The answer is simple. All these years later, it is my time to finally share my story. Many write me saying they heard this or that. I remained silent. It is time for me to share how we got here, and why we began in the first place. It is my turn to share what I went through.

So I will continue my story.  

After my conversation with Laurie and Alison, I felt much more confident adding the words For Life to the name of our new organization. 

It meant different things to different people. 

For some, it represented their very strong belief in their pro life views. This is obviously much more politically driven. 

For others, it was a statement of dignity for every life and probably much less political. In fact, I would say that all lines of politics seek this for different groups of people who are marginalized. 

For me, since I'm not very astute at politics, and I tend to look at issues as more a matter of the heart, I'd say I fell into the second camp. 

Even though we really had two different reasons for our adding those words we all felt it was a very important conversation to have. 

Parents were, and still are, being given a negative perception of Down syndrome while they are pregnant or at the birth of their child. 

Where ever you stood on the political aisle, those in the Down syndrome community realized this was affecting the dignity of their loved one. And those of us who began the IDSC truly believed that. 

Ibby was the big sister of the group. Technically I feel like the IDSC formed the night the two of us decided to create a message board that welcomed anyone open to respectful dialogue about the things that mattered to us as parents of children with Down syndrome. Ibby has a wit that balanced the passion of our feelings. She and I spent many, many hours carving our emotions out. After you have a baby with Down syndrome, and you receive a negative reaction from different people in your life, it takes years to process those feelings. And part of the much needed conversations were spent discussing these situations, and how we handle them with Grace! Ibby led us in that department and lead us well. 

Kris is much more of an intellect than me. She has so much information and she had a lot to teach me. She is a teacher by trade, so this came naturally to her. She brought so much clarity to the table. Things that I had never thought of.  Kris's deep belief in the beauty of every life is absolutely amazing. Her wisdom and message was such a breath of fresh air. Something that we needed to ensure that we had a good solid mission. I was so grateful to have her on the team to grow this message.  

My friend Kayla brought strength. A beautiful grace filled strength. She kept a steadfast belief in her son that is contagious! I've marveled over the years how she balances her work and family, and along with that her sense of humor. She was a very integral part of me finding my own strength and believing in the power of my own message. I was so glad to have her on the board, as she was one that could make me laugh while at the same time help us keep focused and not lose track of the mission. 

On a beautiful, sunny, Sunday morning, Ibby, Kris, Kayla and I emailed goals back and forth to each other. Most of the messages pertained to teaching others that every life, including our children's lives, was precious and their dignity was not dependent on another person's definition of perfection. 

Unfortunately, we heard from a lot of families that many around them gave them a grim outlook for their child's future. It was not only medical personnel, but also the general population. Since we all had experienced this as well, we knew that this needed to change. 

There were two things we all knew for sure.  We all wanted to support parents who were new to the Down syndrome journey and we wanted to advocate on behalf of our children. 

All of us worked very hard to get the organization off the ground. 

This was the team that began it, and the heart and soul of the organization. 

We wanted to be sure our voices balanced the message from our perspective, while we respected others voices. 

Others were an inspiration to us, even if they did not become a board member. One person in particular was a friend of ours named Chelle. She was the one who pointed out to many of us that parents were negatively affected by the way they were given the news that their child had Down syndrome. Her ability to share this was a cornerstone of our efforts to teach the world about the dignity of our children.

This was the beginning of many years of hard work. 

Years of love, sweat, and tears. 

Years of making sure that we showed respect while we shared our message that every life is indeed precious.

This entry was posted on Saturday, August 25, 2018. You can follow any responses to this entry through the RSS 2.0. You can leave a response.

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