One Moms Response | “Eradication” of Down syndrome

It is Day 163 of 321 Days of Acceptance from Generation G! Today we meet the amazing Judah from GiGi’s Playhouse Syracuse!  His mom is a favorite blog contributor here at GiGi’s Playhouse and she had a few thoughts on the recent news stories coming out of contras like Iceland & Australia.  You can find more of Beth’s writing on her blog Finding the Joy.

Love my Life Down-Town – A Rebuttal

I avoided writing about this topic because…I don’t know why? I’m too mad? I’m a hypocrite? I have nothing new to say? The community is flooded with responses to eliminating Down syndrome. The truth is. It’s all of these. But here I sit, ignoring the show I’m watching, wine on the floor rather than in my hand, because I just cannot let myself be so passive to such a crossroads. I cannot not keep my head down in this traffic. You will instead find me in hard hat, putting up stop signs.

I’m. Mad. I’m mad because eliminating Down syndrome in essence means doing away with my son. What if in an instance we could poof away all the people in this world with a disability? What if there was a vote? How many would agree to do it? You know what? I have no idea what that number would be, but I know it would be some. I know people would “poof” my son away the first chance they could. It’s a horrid feeling to know that. It baffles me and also,  it really freaking pokes the mama bear inside of  me.

I’m a hypocrite. I didn’t have the test. I do have an intuition of sorts. It’s eerie but I can’t deny it. I knew I was going to have a baby with Down syndrome day 1! I just had a feeling. I waivered when it came to test time because I knew….so, I procrastinated and asked countless people their opinions. I purposely surrounded myself with conviction that I was fine, Judah was fine, Down syndrome didn’t matter. All these things helped me evade making a decision so I would never actually see it on paper….I can’t be sure what would have happened ? Thankfully I’ll never know .  All I know is there were options in my mind,so I get it . I am a bit leery about the fight…because if you don’t know what I now know, how can I make you know? How do you make someone feel something they don’t know yet?

I have flooded my social media feeds with the adorabalities of my dear Judah. I made up the word adorabality and he deserves it dedicated to him . He is something special all right…and he is work beyond all work; but it is glorious in all its returns.  You know this. We don’t need some steering articles spewing incredulous facts to tell us numbers because  If you love me or if you love Judah….then you know what Down syndrome is all about. I can’t tell the world anything new. Down syndrome is not a burden. Down syndrome is the most incredible gift. It fixed me!!!! I say those phrases so often you may find them on my tombstone. They are the truest words I have ever spoken, but that’s it. I cannot come at all these eliminating articles with anything new. There are no words that I can say to fix this travesty that I have not said before. I do wonder though. If so many people with Down syndrome are saying “Down syndrome is great!” And so many parents are declaring their love for this heartwarming disability then why in God’s name is nobody listening? Are we viewed as liars? Sugar coaters? Does the world think we are trying to trick them into having a baby with Down syndrome? How is no one getting the awesomeness of these people with something extra? All you have to do is talk to a person with Down syndrome or someone who loves them and you’ll get it. I want to scream it from rooftops with a microphone, into a megaphone ” YOU ARE MISSING OUT… DON’T DO THIS TO YOURSELF” but by now if you know our family and are reading this then you already know.

And if you don’t? If you’re a worried momma or a politician trying to do away with all the “extra expenses Down syndrome puts on our economy” well then I’m sure you won’t find yourself reading about my firm-planted stance. I’m sure you will scroll right by. Maybe because you are frightened?

Quick side story here: when I had convinced myself I was having a baby with Down syndrome, I shared the news with a close friend. She urged me to read Kelle Hampton’s “Nella: A Birth Story” I wouldn’t do it. Even though my friend promised me it was beautiful (and it is) and thought it might help (and it would have ) I just could not bring myself to do it. After Judah was born with Trisomy 21, I took to Google, of course. Her story was the first thing I read in my hospital bed. Then, I immediately repeated reading it with my husband. We sobbed the most reassuring sobs. I read it again. Then I read her book as soon as I was home. And I have and will continue to read that story on the eve of Judah’s birth from now on.

I also felt the same way about the anecdote ” Welcome To Holland.” I despised that story. I didn’t want to go to stupid Holland.

…..And I get it if you’re frightened, or you are afraid you might will it true by educating yourself. I know It sounds crazy… but I understand it because it was me.

I love Holland now.

I love the pain I felt. I loved the extremely uncomfortable shift my life took. I love Down syndrome. I love all of this different and beautiful path. And so maybe we are frightened or uncomfortable or we just don’t know. And maybe I won’t change one person’s mind. But I have to write about it anyway. The pull is like a magnet’s North to a South. I owe a homage to the little boy who changed me. I owe it to the world to share my one-time skeptical, side of the story and I owe it to myself so that I can pick up my wine, watch a show, and know I’ve said my piece.

Judah and his friends playing, learning and growing together and GiGi’s Playhouse!

Thank you again Beth for sharing your words with us!

Do you have a story to tell? How have you grown and learned right alongside your child, sibling friend? How has the hard stuff in life given you a new strength & view?  We want to hear from you! Please email Heather at hrodriguez@gigisplayhouse.org to learn more about being featured on the #gigisblog.