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For the Parent who Just Received a Down Syndrome Diagnosis, on the Anniversary of our Own

Dear Fellow Warrior,

I don't know you, yet I feel that we are connected. I remember walking in your shoes and fearing for the future. I remember feeling so alone, then finding others who were experiencing the same emotions, and it helped me cope with the news that you are dealing with today. And so I write this letter in the hope that you find it. I write in the hope that you know you are not alone.
 
One year ago today, we received Quinn's Down syndrome diagnosis. I sat down in front of the computer and told the world our story in a post that makes me cringe when I read it now. In the year that's passed, I've had a chance to look back on those raw emotions and remind myself that I didn't know then what I know now. And most importantly, I hadn't met Quinn yet, whose very existence is my greatest accomplishment. He represents my courage in a time of doubt, patience in a time of chaos, and the unyielding strength of a tiny human that I took for granted.

Quinn's sweet face on the day we learned of his pleural effusion



But I didn't know this then. I was terrified, isolated, and grief-stricken. I found myself unable to celebrate this impending life, both out of fear and anger. I closed the nursery door and hid the baby clothes for months, embarrassed at myself in the process, but knowing that their very presence would send me into a tailspin of grief. I knew that I would love Quinn when he arrived, but this seemed so very far away from reality in the weeks following his diagnosis, and as time marched on, we faced new problems that made me fear becoming attached to someone who might not survive. I was an actor in those days, playing a role I remembered well from the time I was pregnant with Atticus. I knew how to answer the questions everyone loves to ask a pregnant woman: "It's a boy. He's due in January. He's my second." But those answers always felt like they deserved an asterisk at the end: "He has Down syndrome. The doctors found a pleural effusion. He might not make it." Of course, I never shared these footnotes. I gave the people what they wanted because no one knows how to reply to unexpected news like that. I joked and traded stories with other pregnant women while holding back a searing jealously because their baby would be "normal" and mine wouldn't; these women never had worst-case scenario conversations with their OBGYNs. While I was researching Early Childhood Intervention, Medicaid Waivers, and special needs preschools, these happy pregnant women were buying baby clothes and painting the nursery with stars in their eyes. I woke up at 3am almost every night, unable to fall back asleep because I was convinced I didn't have the skills to raise a child with special needs. In those months before Quinn was born, I was lost.



But then he arrived and my reality shifted. I held him in my arms after our very short delivery and could actually feel the pieces of my life falling into place, like a puzzle that, when taken apart and rearranged, was actually more beautiful than when it was previously assembled. Every worry faded away. The moment our eyes met for the first time, he seemed to ask that I take him for who he was, and what could I do but make that promise? There was no anger or sadness or jealousy, even as I looked at all the other newborns in the hospital nursery. My Quinn was perfect just the way he was.

And so I say to you, fellow warrior, give it time. You must allow yourself to grieve for the child you thought you would have. You must allow yourself to feel angry and jealous, for you never asked to take this journey. You never asked for your child to be "special." But there will come a day when your grief will break the surface and you will finally be able to breathe. And in that moment, you will realize that your life has taken on a new meaning. Everyone who surrounds your child will be made better because of him. And because you came out of this with a new outlook, you'll learn to worry less about the things that really don't matter. The spilled coffee, the morning traffic, the missed meetings will be frivolous. You have a higher mission than you did before, so these things can no longer touch you.

And as your child grows, their successes will bring you more joy than you thought possible. Every smile, clap, and coo will be a celebration. You will actually cry when he rolls over or learns to sit up for the first time, while simultaneously realizing that milestone charts are overrated. You will acquire grace and patience, and learn that your child blazes his own paths and develops at his own rate. And you will realize just how much better your life is now that he's in it. You will make friends who are walking similar paths and share an instant connection. I can't imagine my life without these people; it's as if we're all one family, and I root for their children with the same vigor and enthusiasm I show my own. Will there be hiccups? Sure. Will there be tough days? Of course. But we aren't guaranteed much in this life, and we have to hold on to happiness no matter what unexpected form it may take. For me, it's a supportive and loving husband, a precocious three-year-old who is honest and kind, and a baby with Down syndrome that smiles brighter than any person I've ever known.

Your happiness will come, too. I promise. And it will be impossible to ignore...
Oh, hi.




Comments

  1. That was perfect! I couldn't have explained it better. My DS daughter is two now and we are sooooo very happy she came in to our lives. She brings us joy every day. Both of our daughters. But the little one has made us all grow. Thank you for sharing.

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  2. Beautiful. Thank you for your words and your inspiration.

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  3. Beautifully written. As a mother of a special needs little boy (who does not officially have a diagnosis at this time) I found myself able to relate to your post. Your words are so true and those moments that some may take for granted are so much more precious. Such a sense of relief to know others agree--milestone charts are entirely overrated! Quinn is beautiful and is so lucky to have a loving family.

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  4. Would you mind if I share this on my blog?

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  5. Hi there!I just read this.I am from Greece and mother of 2 boys.They haven't been diagnosed with D.S or any medical problem (so far and thank God),but your thoughts,your way of thinking/writing, Megan, convinced me.For the first time and even in a foreign language (for me) I finally got to see things from the perspective a mother with a DS child would...and that's the SAME of any mother!You scared any prejudice or fear( I wanted to hide) away!!I wish u lots of happiness!!

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  6. So beautifully written thank you, are diagnosis is autism for my son and I often feel different emotions about raising a special needs child, you are a great mother, teacher and warrior I congratulate you xxx http://twinsplusonemummy.blogspot.co.uk

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  7. Amazing! I don't have a "special needs" child but I do work with adults that have intellectual disabilities. It's beautiful to read how accepting you are about Quinn. Unfortunately some of the people I've come across have been disowned and parents have called to "make sure they don't show up at their doorstep". It's heartbreaking, for me that is, because even as adults they don't see the hatred. I'm proud to say that my daughter has spent time with them & she sees them as "normal". It may also be because I always say that there is no such thing as normal. Everybody is different, crazy, wacky, etc in their own lil way. No two people are the same. Therefore, what is normal?

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  8. This is exactly what I needed today! After losing a son in October, we found out in January that we were expecting again. We were overjoyed and terrified at the same time. Then in March, we learned we were having another boy, and that this son had Down Syndrome. I was in denial for awhile and we were given the absolute and final results today (the first test was 99.8% accurate, but I was still holding out for a miracle). Since March, I have been experiencing so many of the same thoughts you had. I've read that roughly 92% terminate the pregnancy, and although I always thought I was against abortion, I have found myself flirting with the idea. My pregnancy was already extremely high risk prior to the diagnosis. I think mostly I fear not knowing. Not knowing what has health will be like, or if he will even make it into this world. My sister is due 5 days before me, and I feel myself getting jealous of her "normal" baby. I fear for my other children and how it will affect them. I worry that I won't be able to handle all that comes with the diagnosis. But then I look at your boy and the joy on his face, and it melts my heart. I don't know how you do it all , and any advice is appreciated.

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