Archive for August 2018

Part Two Of My IDSC Journey

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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.

Part One Of My IDSC Journey

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Part One 

It all started in my living room. I was sitting with two very dear friends. Laurie and Alison. 

It was an innocent moment. 

We talked about a whole lot of things. 

We explored God in our lives. Our worries for our children. Our joys. 

It was one of many many conversations. 

These two women invited me into their hearts. And I gladly accepted the invitation. 

One day, I brought this up... I said , "I'm sad that so many doctors, family members, people push to end the life of a person with Down syndrome while a mother is pregnant.
I feel like the world needs to know this." 

And then I said the words that I can never take back... 

"I think I need to start an organization that talks about this issue." 

I'll never forget Alison's response. 


MaryEllen was stacking blocks in a stacking toy. 

She said, "It doesn't make sense. I see her playing here. I see a beautiful little girl." 

She saw MaryEllen. 

It was that simple. 

The three of us had many more conversations. 

Some included my journey. Some did not. That was the beauty of those moments. 

We were just three friends. 

Learning. Sharing our journey. And strengthening each other in the journey. 

While our kids played. 

One day, our conversation went toward the termination rate of babies with Down syndrome. 

We talked about the pressure doctor's put on parents to "make a decision". 

We discussed how society views Down syndrome. 

I had been blogging privately for a long time and shared how my blog posts were being read by more people than I imagined. 

I was scared and happy at the same time. 

And I told them I wanted to change the direction of my blog. 

I had made it about me. My reaction. 

I wanted to make it about MaryEllen. 

I wanted to tell the world that MaryEllen's life is perfect and precious. 

That no matter how many milestones she met, she is exactly the person the world needs! 

That every person's life is precious. 

I looked at both of them and said, "I need your help."

We need a name! 

I explained the process I had been going through. 

Many mama's had shared their input. 

One beautiful Texas mama said, "Call it a coalition. The world will know we are standing together." 

The next mama said, "I'm in Australia, please call it International!"

So we had two starting points. Actually three. Down syndrome was the prominent words. 

At that point, I asked Laurie and Alison, this, would you add For Life? 

Laurie is a women of few words. She said, "You can't not add that. It's the truth. You are discussing their whole life. Yes, For Life needs to be in there." 

Thus the beginning of the IDSC For Life. 

It was probably the scariest day of my life. And the day I've explained more times than any day of my life. 

Thank you Laurie and Alison for believing in my daughter, and in my message! 

You were the starting point. And I am forever grateful!