One Life

Today is the first day of 21 for 31.

I recently read a series in the New York Times all about having a baby with Down syndrome.  They were really hard for me to read.  Especially the piece written by the couple who ended up terminating the pregnancy because the husband didn’t want the child, although the wife did.  That hit me like a shot to my gut, because when I was pregnant with Katherine, we had genetic testing done and the tests showed that she had an elevated risk for Down syndrome.

That was really hard.

I know how hard a life with Down syndrome is.  That made it harder.  But I also know how well my sister is doing, how happy her life is.  That made it much much easier.

And ultimately of course, K Dub doesn’t have Down syndrome, but for us, it wouldn’t have mattered.  For me, it wouldn’t have mattered.  I was overcome then, as I am now, with a primal mom feeling.  Regardless, they will pry my child from my cold dead hands, no matter what, and if we have any more children, I’m not having testing done, because it won’t matter.  It doesn’t matter to me.  I am as pro choice as they come, and still, as I said, they will pry MY child, any child of mine, from my cold dead hands.

But I am in a unique situation.

The thing I am always struck by when I read these articles – people don’t know what a baby or a kid or a person with Down syndrome is like.  Are they imagining institutions and children who can’t talk or feed themselves?

I cannot speak to what it’s like to have a child with Down syndrome, to how it feels when people stare in public or tell you that your special angel was a gift from god.  Even I don’t know what that’s like, because I have a sibling with Down syndrome, not a child.  I would imagine all of those things – the things the rest of the world brings with it – are insanely hard.

But I can speak to what the life of an adult with Down syndrome is like, in a tiny corner of the world, and I am here to tell you that well, it’s a damn good life.

It’s really hard to describe Annie’s place, her life, without stating exactly where and what it is, but it’s a pretty amazing place.  A sustainable farm, with cows and chickens and gardens and tomatoes and eggs and raw milk.  Spotlessly clean.  Warm, and bright, and with vases of fresh flowers from the yard on all the tables.  Set in a little town that loves it and sustains it and learns from it.

Annie can knit scarves and she makes pictures from felting that you’d be proud to hang in your house, should you be able to get your hands on one.  She goes out to dinner and to movies and reads books and sends email.  She has a job at a local artisanal cheese maker.   She cooks breakfast for her house every weekend, she collects eggs, she cleans out barns and she has a cow that she is in charge of milking, except right now that cow is pregnant and gets to take a rest.  She yells at everyone else to hurry up on hikes.  She makes apple cider and churns butter.  She bakes muffins as presents.   When she arrived she weighed over 200 pounds, and now she’s lost over 80. She has a boyfriend and best friends and people who care for her like she is their family, because she is.  She is polite and well spoken, but she can also be a total pain in the ass, because she’s not an angel sent from  god, she’s my sister, and we fight just like sisters fight, sometimes, but at the end of the day she goes home to her house, and I go home to mine, just as it should be, now that we are grown.

You should also know that my sister is one of my favorite people of all time.  She makes me laugh every time I talk to her.  I have never, not never ever, wished she was not here, and when I think of her, the word “burden” never comes to mind.  I have often wished that she did not have Down syndrome, but I have never wished that I did not have her.

This is not meant to be a judgment or a contest, or a ranking of the correctness of the decisions of others.  To each their own would be embroidered on a sampler and hung on my living room wall, if I knew how to, you know, embroider.  It’s just me saying that nope, Annie’s not a burden.  I am glad she is here.  And I am absolutely certain she is glad to be here as well.

My mother believes this place has saved Annie’s life.  I just think it’s given her one.   And while is is expensive and it’s small and it’s not always perfect, it is one way.  It exists.  It isn’t, of course,  everyone’s life, but it is someone’s life, and that someone is my sister.

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32 Responses

  1. Wow, this is an amazing perspective, and I had not read the Times article but that decision–and the couple’s split view–breaks my heart.

  2. Love this post!!! What a great photo, too – beautiful!

  3. I read that article, and it put such a stain on my day. I totally agree with you. Great post.

  4. Elizabeth, I am truly, madly in love with you, and always will be. I am.

    Here’s a truth: if Sam had had Down’s, we likely would have terminated. I think. I can’t say for sure, but I think we would have.

    Here’s another truth: If our next child has Down’s, we will not be terminating. Having Sam has taught me that I will, can and do love my children no matter who they are, no matter what is “wrong” with them. I now know that I COULD handle whatever it was that came my way, provided it came in the form of a child and not, say, a crocodile shooting from my vagina.

    I didn’t know that before I had Sam, and I am so thankful that she didn’t test in any range for anything, because I might have made a decision based on information I didn’t have about myself, and about how I parent and want to parent and how I feel about my child.

    • Aw, thanks Jonna. That is such a brave and also interesting point. It wasn’t until I actually had Katherine that I knew for CERTAIN that it wouldn’t matter at all, anything she had “wrong” with her. She was mine and that was all that mattered.

  5. This is a lovely tribute to your sister, and a whole lot of food for thought.

  6. Beautiful post.

  7. Elizabeth, being your friend is so incredible, simply because you never fail to make me think and feel and learn from the perspectives you share. This was really brave.

  8. Beautiful post, with a great perspective.

  9. Dear Elizabeth,

    i came here via the awesome Jonnikers’ tweet about you. Thank you for a beautiful story about your family- the farm sounds wonderful! I cannot say how much I appreciate this post. Thank you.

  10. Everything you write makes me feel like English is my second language- I never know what to say. I appreciate this- I’ve never know anyone with DS but we didn’t test for anything except Tay Scachs because I am a carrier- and only becuase there is no surviving it.
    Im so happy that your sister is living such a full life, she is a lucky woman!

  11. There are so many things to think about now that I am navigating the transition from actively trying NOT to have a baby to actually trying TO have a baby (or at least preparing to try). There are so many “What Ifs” and honestly somedays I don’t feel adult enough to be thinking about all of it.
    I just want to say thanks for taking this sort of unspoken fear of mine and putting it in such perspective. Your honesty is comforting and inpsiring.

  12. I was not familiar with 31 for 21 until just now and I am so excited to hear more.

  13. We denied every genetic test they wanted to do. When asked why, and explained in great detail what children who are born without this or that feature that can all be avoided by termination – because, you know, what is life if not perfect – we simply told them that whomever this child is, is written in the stars, and it won’t matter. My son, my angel, is not ‘special needs’, but is so special to me. He is mine, and I would give my life to protect any form of life that was given to him. The same goes for any future children we come to bear as well.

    We changed ob’s after that visit.

  14. My brother can’t talk or feed himself, and I love my brother very much. A big part of me is terrified to have a child like my brother, knowing how difficult it has sometimes been. I feel really guilty saying that. Then another part of me realizes that if I had a child like that, I would probably be better able to take care of them than most considering my experiences. I think I would want to know in advance though…not to terminate necessarily but to be able to prepare and educate myself. I don’t have kids yet, so I’m sure Jonniker is right about the feeling changes once you’ve had that experience.

    • are you blogging for 31for 21 too? My son is on that level like your brother so if you are I’d love to share it with my daughter. She sometimes feels alone in that experience although it is an excellent way to gain insight into her friends by their reaction to her brother.

  15. this was really beautiful, what a sweet tribute to your sister, did you share it with her?

    I had the testing done with my first kid, then I realized it didn’t matter, I wouldn’t do anything different. I didn’t have the testing done on my other 2 pregnancies. because i KNEW

  16. OOPS, …because I knew it wouldn’t change anything about how I handled my pregnancy.

  17. I really enjoyed reading this. So many blogs that I read are about young children with Ds, like my son. Very few are written about adults, and even less from a sibs perspective. Thanks for sharing with us. This is a great post 🙂

  18. Wonderful post. I’m digging your sister’s country life. I wish I could live in the country near farms (but not on a farm… I just want to visit the animals not take care of them) but I married a city boy. I think people do imagine the worst case senario but it isn’t someone at an instutional functional level. The worst case scenario is having institutional thinking. I know because my son can’t do a lot of things but he has a meaningful purposeful life. I absolutely beleive he was a gift from God but that is a weird comment from a stranger. I plan to blog about that at some point this month.

  19. […] This post from Elizabeth made me realize something I’ve been meaning to articulate since the minute Sam’s been born. In summary, it’s an incredible account of the life of — and her relationship with — her sister, who has Down syndrome, and the moments during her pregnancy when her daughter was shown to have an elevated risk for Down’s. […]

  20. I came here via Jonna’s post, and this really is a lovely tribute. I cannot say what I think about what I would do. It troubles me to even think about it, frankly, but I don’t have to at present so I won’t. It does my heart good to hear that everybody has a place that is right for them, and you and your sister have found yours.

  21. For all the talk about children with Down syndrome, the complications are NOTHING like the challenges of having an adult with Down syndrome.

    Is there a link for this farm? This path mirrors some of the ideas that my wife and I have for our son, a three year old with an extra chromosome.

  22. Fantastic post. I too have a son with ‘designer genes’ and I really enjoy reading perspectives from siblings. It sounds like your sister has found an amazing life for herself. I hope that my son has an equally fulfilling opportunity when he is an adult.

  23. Elizabeth, what a beautiful, beautiful post. Thank you. As a parent of a child with Down syndrome (and a child without DS) I am hungry for information from siblings. My mind wanders about their future sometimes (when I let it) and all too often, that word “burden” comes up, and it just breaks my heart. But what you said, you made my heart feel full and teary (in a good way) and inspired and comforted. Thank you, as always for your honesty and candor and eloquence.
    And thank you for sharing your sister with us!
    PS. I think I want to live on that farm too. 🙂

  24. I came here via Jonniker and just had to say that this is a great post. Wonderfully written and inspiring and beautiful.

    Lovely picture. Thank you so much for sharing all of it.

  25. We had the testing done while I was pregnant not so we could find out and terminate, but so it would give us enough time to educate ourselves on everything we’d need to know once the baby was born. People thought because we DID get the tests it was because we wouldn’t keep the pregnancy but oh how wrong they were.

    Great article and I’m so happy your sister is in a such a fabulous place, both physically and emotionally.

  26. Where is this place- did your family design it or did it pre-exist? Stopping by from 31 for 21 and loving what I read!

  27. Annie is beautiful. And you are a beautiful sister, just the kind I’d like my own daughter to grow up to be.

    With love from,
    A mom to three kids, the oldest of whom has Down syndrome

  28. Wow, you’ve got an amazing sister. She’s lovely. Thank you for sharing.

  29. […] (and if you’re wondering why I feel so strongly about t his, you can read this, or this, or this.)  Any thing else, I’m good with, and we can work out while we drink our chilled red […]

  30. This is a beautiful post. I am so glad you shared it. 🙂

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