Wednesday, March 18, 2009

No, I wouldn't - this one's for Lisa

Lisa's post really got me thinking.

She said: I think I still haven't made peace with the fact that he has Down syndrome. I don't know if I ever will. There are other parents in the Ds community - lots of you who read this - who say they wouldn't change that about their child. And I have a hard time wrapping my head around that.

The first month or so that Kira was here, I said to my husband, "I wish someone would tell me when I'll quit thinking DownsyndromeDownsyndromeDownsyndrome every time I look at her." If another mom asked me that question today, I wouldn't have an answer for her. It's there every.single.time I look at my beautiful girl. I think it a million times a day.

I think, though, that I'm ok with that. Down syndrome is as much of who she is as are her gorgeous eyes, her strawberry blonde hair (so much like mine when I was her age), and her Daddy's cheekbones. Down syndrome is intrinsic to every cell in her body.

Do I wish she wouldn't have cognitive delays? Yes
Am I terrified for her future? Yes
Do I wish that she was knocking out milestones left and right, just like her brother did? Of course
Do I mourn what could have been? Absolutely and often when I least expect it. It hits me like a punch in the stomach.

Would I change the fact that she has Down syndrome? No

My girl is:

Empathetic beyond her years
Quick to forgive
Happy - and over-the-moon when someone else is happy
A daredevil - much to her mother's dismay
An entertainer
A dancer
A flirt

Who would she be without Down syndrome? I have no idea. But, I know that this kid, this one that I have right now, is perfect.


  1. Well said. I am to the point where Down syndrome is not at the surface of my life. Yes, my daughters have DS, but my life doesn't revolve around it. In fact, it is a moot point to me. I forget about the DS, honestly. If Payton had never been born with DS, I wouldn't be the person I am today. I wouldn't know how to love like I know to love. I wouldn't have the compassion I have. Etc etc etc. It is all because of her and her disability. And as long as she is happy, I'm happy. ;)

  2. Thanks for this, Wendy. Really, it's not like I'm consumed with the fact that Finn has Ds . . . I hope that's not how my post came across. But it's all those other things you said - wishing he wasn't going to have cognitive delays, being afraid about his future, etc. Most of the time, I'm just going along, loving my little baby. And then every once in a while, it hits me, like you said, like a punch in the stomach. I guess today was one of those times when Daisy asked me if he'll be a daddy when he grows up.

    Anyway, I really appreciate your perspective.

  3. I found you through Lisa. And I see that we follow a lot of the same blogs. I loved what you said here! One of our mom's in my group said "Somedays all you think about is Down syndrome and other days you don't think of it at all. It will come". she is a mother of a son who is 12 with DS. These were comforting words for me back when I started. I am now 20 months along in this journey and have found that she was right.

  4. Gosh, I wish were where you are. Honestly.

    I, too, felt led to type out a longer reponse and work out what I was feeling, so please feel free to check it out and let me know your thoughts.

    Thanks so much for sharing.

  5. Thanks for sharing! What a gift you are to her!

  6. Well put! I feel exactly the same.

  7. YES!! Exactly! Very well put, Wendy.

  8. I still see Down Syndrome when I look at Lila- she's 2 1/2. I don't necessarily think it's a bad thing. She does have DS and she's beautiful to me. Down Syndrome doesn't run our lives but it definitely has a huge impact on our lives with Special Ed preschool and private therapies. And I think it's important (for me) to remember that we all go through phases. Today the fact that Lila has Down Syndrome isn't bothering me at all. Tomorrow might be a different story. That's one reason I love the blogging community- one that I never dreamed I'd be a part of because it's just not my thing- but there is so much support here. And total strangers can help you through things that would be extremely difficult without them.

  9. Great post. I hope I get there some day.

  10. Lovely post. I totally agree with most of it...I guess I just see the things I love about Kailey as being who she is, not the product of if the Ds was gone, she would still be my sweet girl, just without some of the added struggles. (Or at least different struggles). But it's really just something we will never know, so there is no right or wrong answer in my mind.

  11. I agree. It seems impossible to take DS out of G without taking out part of who she intrinsically is. Would I take away her struggles? Without a doubt, and that is one of the things I am striving to do every single day with therapies, writing, educating others when possible, and just letting her be my little spritely girl.

  12. You said it so well, and I feel the same way. Life is good for us, and Delphine has showed that to us. I love your list about Kira :)

  13. I remember when Ricki was born (she is 14 years old today), wondering how long it would be until the first thought in the morning wasn't "I have a baby with Down syndrome". Thank G-d, the day came!
    I wrote almost exactly a year ago about if I would change Ricki's DS:

  14. Thanks for sharing your point of view too! Just like Chrystal and Lisa's points of views were written so beautifully, so was yours!

  15. I just came across this post and I love it. My daughter doesn't have Ds, but she does have a genetic condition that causes similar delays. I can totally identify with this post, and with your Don't Miss It post, too.

    I looked for a spot to email you, but I can't find it, so I'm going to post this here. It's a different take on Welcome to Holland----I thought you or your readers might be interested in it or have some feedback. It's not about the time when you've made peace with things, like you have here. It's about the gut-wrenching time when you first realize that your child, and life, will always be different. I wish I had had it to validate my feelings when I was in darker places.

    Oh, and you can reach me by email at