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 it’s returns. You know this . We don’t need some steeering 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 heart warming 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 your 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) 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.
…..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 extreme 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.
On my 43rd birthday I am still figuring out who the fuck I am. How is that possible? The answer is a short one. I had to undo all the people I thought I was supposed to be first.
I was supposed to be pretty, skinny, and fit in. I was supposed to go to college, party, stop partying, get a job, get a boyfriend, get married, get a house. I was not supposed to curse, be late to bloom, be outspoken, be forth coming, be selfish, leave my comfort zone, take a risk, be unlady like (whatever the fuck that is) or in essence, be me. I was supposed to be me…. reeled in. Me, but not too much me. Just a little me.
Society told me how to be. I idolized those that were loved by the masses. Their public life molded me into what I should be. I don’t blame my parents , teachers and role models. They did not tell me how to be…but they also did not stress the importance of being me. No one did. In fact everyone seemed obliviously satisfied with all the people I was trying on for size.
Somewhere along the way, because of age and wisdom and Judah I started to see the world differently. Pretty and popularity were not standards to be judged by ; rather kindness was. Love was. Bravery was. Real shit was. I started to realize that I had been doing it all wrong. All I had ever craved was admiration and people being proud of me. The only time I had ever earned it was when I cut the crap and became real.
…Authentic, exposed, insecure, sensitive, loyal, fun, impatient, kind, selfish, selfless and brave me. When I turned into that girl I became loved. First off, because I now loved who I was. Secondly, because I was seen for who I was….not who I was pretending to be. I pretended for so damn long that I’m just getting to know myself again. So, obviously, I don’t have all the answers….But this is what I would tell the young people playing dress up with different personalities:
1. Karma is real. Be nice.
2. Whether someone likes you or not, actually has very little to do with you ….brush your shoulders off and straighten your fucking crown.
3. You can’t do all the things and do them all well AND be happy. Give yourself a break.
4. You really are your own worst critic. No one else is really paying that much attention anyway.
5. People will come and go in your life. You are allowed to be sad about that. You should explicitly share your feelings with loved ones ….but do not dwell. It’s not good for your soul.
6. Be a rebel. But don’t do it because it’s cool to be rebellious. Do it because you aren’t a piece that fits neatly into society’s puzzle.
7. Be charitable. But don’t do it because it’s cool to have a cause. Do it because it stirs your soul to serve others and see them smile. If it doesn’t stir your soul, check in as to why.
8. Speak up. Even when you think you’re alone. You aren’t. There isn’t a feeling in this world that no one has never had before.
9. Hold out. Hold out for love, your dreams, and whatever the thing is that has always moved you. Settling is not for dreamers and we all have dreams.
9b. It is never too late. You are the author of your own story. Don’t let tales of others dictate the way yours will play out.
10. Be considerate. Don’t forget your family. Love them fiercely. Let all the little shit go. Regret is a heavy burden to bear.
11. Guilt and worry have no place in your life (this one I’m still working on.) One has to do with your past, one with your future. Neither of which you have control of.
12. Surround yourself with your heroes, your mentors, and people you are proud of. All the others are just helping you hide. Hiding is easy. Being real is hard.
13. Show up. I know you won’t always want to, feel like it, or look your best,… do it anyway. The shame of letting yourself down is not worth the price .
14. God is always there. Sometimes you may think the light has abandoned you or was never really there at all. That is not true. The light is always there. Look for it. It will eclipse your darkness.
15. Love your life. It will be hard and shitty. It will exhaust you and bewilder you. It will surprise you and hurt you. Love it anyway. Complain about circumstance if you must, but love your life. The messy way it is. It is irreplaceable and valuable and there is good in it. Find gratitude in that. It will serve you for further blessings.
16. Listen. Really listen. Not so that you can compare stories. You already know what you know. Listen so that you can learn, be a good friend and so that other people’s story has power through being spoken.
17. You will get hurt, hurt people and do stupid shit. Don’t let it define you. You are so much more than your mistakes.
18. If you want to change, really, really, change…unchain yourself from what you have always done. Do what you must to rid yourself of the habits that inhibit you. Only then, can the electricity begin to be rewired.
19. Sometimes, it’s a: stay in your pj’s, eat chips, don’t wash your hair, or call anyone… kind of day. Take a day. But follow it with a: false eyelash, favorite outfit,feed your people,.. kind of day…. You need both.
20. Nature can fix you. It won’t solve your problems or change the world . However, a good walk, surrounded by God’s very first creations, will humble and move you. If issues should arise : take to a forest or a lake, not to the bottle.
21. Work hard play hard. It has always been my mantra. It is my dad’s. It will be my sons’. It is everything.
22. Don’t panic about getting it done. You always have. You will not fail. Even if you do, the world will still spin just the way it always has. Take that worry right off the table. Strategize instead. Make better use of all of that mental energy.
23. Life will surprise you and send you curve balls. Don’t be so set in you plans that you are unwilling to adapt. You will miss out on some amazing beauty that way.
24. You won’t be saved from the advice I’ve laid before you. If you were young me, you would have barely been paying attention. …What will ultimately change you is grit and pain and hurt. It will take your anger, sadness and disappointment to change . It will take your fear. You must add in all of those uncomfortable growing pains. THAT is what will make you real. Feel the feelings. Know they have a purpose. Turn them into something worthwhile. Be the sweetest, coldest, and best tasting lemonade… you’ve gotta do something with all those lemons anyway…
25. Happy birthday to me. The real one. Thank you for finally showing up. This second act is going to be fucking fabulous!!!!
Post inspired by: “Love Warrior” by Glennon Melton Doyle, “The Power of Positive Thinking” by Norman Vincent Peale, “The Story Of Diana,”…..and another year in the books.