Dear, Down Syndrome

I met you for the first time 5 years ago.  I hated you the moment they introduced us.  I was angry at your intrusion into my family.  I didn’t want you to have any part in it.  You weren’t expected and you certainly weren’t welcome.  

I felt numb.  My heart hurt and I was terrified.  How was I supposed to tell my husband about you?  I didn’t know how I would explain you to my parents or siblings.  How was I supposed to talk about you to my friends?  I was absolutely certain that they would look at us differently because of you.  I worried about how they would respond and react to your presence.  

When I tearfully introduced you to the love of my life, he accepted you with little hesitation.  There were questions, sure, but to him, you were just another part of us.  Part of what made our family unique.  You weren’t something we could change, so you were something we would accept.  I was left feeling jealous of his willingness and guilty at my resentment towards you.  

As the days passed you and I came to tense agreement; I couldn’t make you go away, but I didn’t have to like you.  You continued to burrow into every portion of our lives, while  I continued to tolerate you.  You brought with you friends and family of your own; ones who had known you much longer than I.  With a certain amount of hesitation I met them and was intrigued by their opinion of you.  Theirs had been formed over time, but they all understood why I felt the way I did.  Each assured me, while you sucked at first impressions; you weren’t as bad as I had assumed.  I was told to take some time, get to know you, that in the end, you would win me over.  

I wanted to, you have to understand, I wanted to like you.  To be like those that had known you much longer; so accepting and understanding.  They embraced you like you were their best friend, held you tight like they never wanted to let you go.  You were something special to them, something to be treasured.  A blessing in disguise, they called you.  They loved you and I wanted to also, but you were a challenge.  You were different, you were unexpected and you changed everything.  

When I held my sweet boy for the first time, I could see that you were just as much a part of him as his dad and I were. It was then that I knew you and I would be forever friends.  My heart told me that despite my fear and my worry you and I would be okay.  I don’t know if it was in the way that you showed through the slight slant and white sparkles of his eyes, or the endearing gap between his toes, but I was starting to see your charm.  I felt your subtle sweetness when I buried my face into that sweet baby spot between neck and shoulder and when you made him melt into me when I snuggled him close. I could see exactly how you had entranced those that you introduced me to.  

It’s been five years that we’ve known each other. My dear Down syndrome, I am grateful for each and every moment; even the ones in the beginning. Through them you have shown me patience. My family and I have learned what unconditional love really looks like. You brought with you an entire family and we are so lucky to be a part of it. 

You and I still have our moments; like when I see you holding my son’s tongue, making it hard for him to form the words that he wants to say. Or when you insist on being the first thing that anyone sees when they meet him. Or when just knowing you fills me with worry and uncertainty for his future. But you have found ways you make up for that. I see you in that little glint of stubborn determination that sparkles through those blue eyes. Or in the strength and perseverance that shapes his body when he’s trying for the thousandth time to master a new skill. I know you’re there when he singles out the one person in the crowd of hundreds who needs joy. I see you pass through him when someone who has known and lost you in the past has a chance to reconnect with you through a hug from that sweet boy. 

For these things and more I do love you, Down syndrome. I hope you know that. Even in the times when I’m frustrated or annoyed with you. In those times that I wish you would take it easy on him. And in those times when others say they don’t see your value. When they say you’re not worth it or you are a burden.  I see you for how special you are.  How frustratingly and amazingly special you are.  And I still love you. 

– Sherry

 

Hi, I’m Sherry, a 30 year old married mama of two, ages 6 and 4.  I’m a registered nurse and serve on the board for the Down Syndrome Group of the Ozarks. I love to spend time doing crafts and messy activities with my kids. We love going fishing as a family.  In the small amount of free time I have, I often write about the more humorous side of parenting, share some of the activities that we’ve enjoyed the most and talk about raising a child with Down syndrome.  I share all of this on my blog, Hand Me Downs.

handmedowns.blog

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3 comments on “Dear, Down Syndrome

  1. Sara Scott
    March 21, 2017 at 5:33 PM

    I just wanted to say Thank You. I really enjoyed this. I am a pregnant with our first child and have been told that our baby girl will have Down Syndrome. It has been difficult for myself and my partner to grasp and to understand something we have no experience with. But will love our baby girl no matter what. This was a great open letter on your feelings and thoughts and it give me hope and inspires me for the whats to come in the future.

    Thank You

    • Sherry
      March 21, 2017 at 8:14 PM

      Oh Sara, congratulations!! It was a big thing for me to accept. Looking back my mind made it a bigger scarier thing than the reality of it was. Thank YOU for being willing to share your current experience and how you are feeling. I’ve always tried to be very transparent with how I felt and handled things for this exact reason. I wanted other families to know that it’s okay to be sad in the beginning and that it can take time to come to terms with this diagnosis. If you want to please contact me. You can reach me through my blog that’s linked above. I would be happy to chat with you.

      Sherry

  2. Judy Best
    March 22, 2017 at 2:01 PM

    Sherry: I always love your way with words! Judy

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