Getting the News, and Then Getting a Grip

The following was originally published to Facebook on October 31, 2016.
It already feel like a lifetime ago that we heard the words "Down syndrome" at 2 AM on June 21. I have gone through just about every single emotion since that day. And the things I felt then are basically nothing of what I feel now.
June 21
Anger. I was angry that this happened. I was 27 and Tim was 25 when we got pregnant. How could two young, healthy people make a baby with Down syndrome?! We had the testing. Where they separate the fetus's and mother's DNA and look at the chromosomes. There was a 99.6% chance our son DID NOT have Down syndrome. I was completely filled with anger. To be flippant, YOU HAD ONE JOB lab company. One job.
Fear. They told us basically everything that could possibly go wrong with our child. He had three holes in his heart. They told us his thyroid wasnt functioning right, and that he failed his hearing test. I started to block it all out after awhile but they mentioned likely intestinal, pulmonary, motor skill, cognitive, speech and eyesight difficulties. Here I am holding this day old baby, who I thought was going to be perfectly healthy, and they are telling me the million ways he is not.
Embarrassment and shame. Here is my child, who is going to live off the system and require help from the government for everything. There go my perfect family pictures (I actually thought this and to type it out now makes me disgusted with myself). We were naming him after family. Should we still give him that name if he wasnt going to bring anything valuable to the world? (Again, disgusted with myself to type it out) I felt conflicted at first. Luckily, Tim did not. I also heard the words "don't cuddle up to the extra chromosome", which has burned into my brain and heart forever.
Helplessness. They took Henry from us constantly. They would take him for a "few minutes" only to return him hours later,  covered in cuts and bruises from blood draws. I can't tell you what that did to me. It broke my heart like it has never, ever been broken before. They would throw out medical terms like I hadn't just given birth after a day long induction and absolutely zero sleep. They whisked him away to the NICU, then shooed me out to go "get some rest". ARE YOU KIDDING ME!? Sleep?! Now?! YOU JUST TOLD ME MY THREE HOUR OLD BABY HAS DOWN SYNDROME. I tried desperately to be what Henry needed me to be but I had NO CLUE what that even was. I felt very broken and alone.
A sense of loss. Gone were my dreams of Henry going to college. Getting married. Moving out and living on his own. I remember trying to read a book to Eli after Henry was born about all of the things he would do with his little brother and I couldn't get through it. I knew they would never do any of those things and I would cry instantly. I remember thinking, "Will he even have friends to come to his birthday parties? Can we still go to Disney as a family like we love so much?"
And now, today.
Love. My heart is filled with love for Henry, and for Eli. I love them both equally with just about every single fiber of my body. My dream since I was little was to be a mom. They made me a mom. They made my dream come true. I don't love Henry any less than if he didnt have 47 chromosomes. I absolutely DO cuddle up to that "extra chromosome" because that extra chromosome is OUR CHILD. And I'll cuddle him all damn day if I want, thank you very much.
Pride. I am so proud of Henry. Does he hit his milestones on time? Sometimes. Does that matter? Nope. In fact, this has given me a whole other perspective. Eli picks things up instantly. It's amazing to see him learn so quickly. But Henry has to work for it. And it makes every little thing he does that much more magical. I've always seen that as an OT, but to see all of the behind the scenes work he does just makes me incredibly proud of his accomplishments, just like his brother's.
Excitement. I know now how incredibly capable people with Down syndrome are. Will it take work? Yup. Will it take time? Yup. But my son is worth that. And I am so excited to see what his future has in store for him. College? Maybe! Marriage? Maybe! Living on his own? Maybe! My dreams for him.... they are all alive and well. He WILL bring very much to society by being here. He's not a mistake.
Lucky. I feel LUCKY to have Henry. I cant believe how warm, welcoming and friendly the Down syndrome community is. I have made instant friends with moms and dads all over the state and beyond. I see what wonderful people they are and I know it's because they love someone with Down syndrome.
I am afraid that Down syndrome will be eliminated from the map altogether with a termination rate currently around 65% in our country and 90-100% in others (For real. Google it). And I GET it. I get why termination rates are so high. The doctors scare you and push termination or even birthing the child and not providing any medical interventions, keeping them "comfortable" until they pass a few days later. It's awful, its heartbreaking. But I totally understand why a parent might choose that option based on only one half of the information. I feel like parking myself out of our geneticists office with Henry and saying "Okay, now that they told you that, let me tell you what it's REALLY like. Then you will have all of the info you need to make your decision." I can't imagine my family without Henry, or the world without Henry. And I can't imagine the world without any Down syndrome at all. So, I am begging you -- if you know someone who is facing this diagnosis, please send them my information. Please think of us if you are ever facing this. I am, quite obviously, an open book. An open book who has been mad and sad and in denial and ashamed and now, finally, completely in love.
I will end my rambling now with Maya Angelou's incomparable words: I note the obvious differences between each sort and type, but we are more alike, my friends, than we are unalike.

Comments

  1. The Lucky Ranns are grateful for The Lucky Wells! I'm so excited for Lily and Henry to get to grow up together (and Quinn and Eli too)! Is it too soon to plan a double wedding?!

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    Replies
    1. You are so right... a double wedding would be perfect! :) We are so grateful to have your awesome family on this journey with us!

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