Well, after midnight, in the hours after you delivered precious Abraham James, you begged God to take away his Down syndrome. Test results had not yet confirmed Abe’s Trisomy 21 birth diagnosis, but you knew. You knew it would be positive. The words “Down syndrome” consumed your mind, repeating over and over with loud, big, and terrifying power. You held Abe and sobbed, letting huge tears soak the blanket wrapped around your baby. You were grateful for the darkness in the room because it hid Abe’s features and you could pretend, for a little while longer, that he was fine. The darkness also hid your shame. The shame you felt for wondering why you’d had another baby at all.
It felt very hopeless that first night and even the next day. Abe had some complications, heart and breathing problems, and an emergency flight to a larger hospital. It was stressful, made worse by the dark, unknown Down syndrome cloud that loomed over it all. You asked yourself: would you ever be able to look at your precious son and not think of Down syndrome? Would you ever be able to wake up and escape the dark Down syndrome cloud? Two week after Abe’s birth, you took a quick break from the hospital to eat lunch with a friend. You told her that you were feeling better about Abe’s diagnosis; Down syndrome already seemed less scary. You described it as the burden you’d just have to bear, the cross you’d carry as his mom for the rest of your life.
I wish I could have saved you so much heartache then. I wish I could have told you to stop being so melodramatic. Save the tears for something truly sad and celebrate Abe’s amazing birth with laughter and love. Look in your baby’s eyes and see limitless potential – it’s there. The dark Down syndrome cloud looming above will soon dissipate and in its place a beautiful ray of light will shine. That’s Abe! He is the light of your life – a precious gift that you were handpicked to receive; the precious, little brother of Julia, Henry, Charlie, and Leo. Forgive yourself for feeling sad and ashamed. Forgive yourself for feeling anything other than overjoyed. I promise that you don’t need to be afraid of Down syndrome. It’s time to start learning about Abe’s diagnosis, find the resources available for support, and just love him. Kiss his sweet lips, hold his chubby hands, and breathe in his smell. Before you know it, he’ll be running, dancing, and impressing you with his amazing brain.
You did have it partially right that day when you told your friend about the burden you’d bear as Abe’s mom. There is a burden, but it isn’t Abe. Inside of you there is a fire burning, an uprising – a mom ready to take on the world and challenge people’s outdated opinions of Down syndrome and the discrimination people with disabilities face. An advocate was also born on March 13, 2014, whether you want the role or not.
Challenge yourself to do things and go places you never thought you’d do: testify before legislative committees, visit Washington and meet with your congressmen, develop relationships with legislative aides and disability rights advocates, have a sit down with your Governor, and read bills from front to end. The world isn’t always kind to people with Down syndrome, but advocacy starts with just one person. You can make a difference. Along the way, you’ll teach Abe to be proud of his extra chromosome so that someday, he can advocate on his own behalf.
You won’t think about Down syndrome every day, but you will think about Abe every day. There will be challenges and delays, worry and sleepless nights. He will meet milestones, but in his own time. Get ready to celebrate! There will be so many celebrations for each of Abe’s accomplishments. Every little inchstone is worth a round of applause, hoots and hollers, and sometimes cake. I’m going to let you in on a little secret: soak up Abe’s hugs. He gives the best hugs. He really pours his whole body into it. I’m convinced his hugs have magical healing powers.
Soon, when you hear the words “Down syndrome,” you won’t be afraid. You’ll be empowered. You’ll be proud. You’ll think of your happy, adorable boy who bubbles over with joy and you’ll glow inside. And, you’ll ask yourself, how did I get so lucky?
Abe was born March 13, 2014, and lives in Kansas with his family. Read more about Abe’s family on www.321soar.com or find them on Facebook @321Soar.