In Their Own Words: William and Marilee on Having a Sister with Down Syndrome

William and Marilee on having a sister with Down syndromeI’ve written a LOT about our family over the course of the past decade, and I’m glad our kids are old enough to do a little bit of writing for themselves. For the past few weeks, Penny (age 13) has written a note to a new parent of a baby with Down syndrome, shared her thoughts on healthy eating and exercise, and answered questions about God, church, and prayer. Today, I asked her siblings, William (age 11) and Marilee (age 8), to write about having a sister with Down syndrome.

I wrote some questions like, What do you think it means to have Down syndrome?  What are some of your favorite/least favorite things about Penny? Do you think that has to do with Down syndrome? What advice would you give to other kids who have a brother or sister with Down syndrome? (Note, as with Penny’s previous essays, I did not correct grammar or spelling for William. Marilee dictated her answer, so she got the benefit of her mother’s editing abilities.)

Here’s what they had to say: 

From Marilee, age 8:

Penny loves dance and she loves school well at least that’s what she tells me she loves to read all sorts of books. It’s challenging because her brain processes stuff slower than ours does. She’s kind and sweet sometimes she’s kind of bossy but most of the time she’s nice. Don’t be uncomfortable about her because people with Down syndrome are very smart and kind and nice. 

From William, age 11: 

It is very fun to live with Penny. She is an amazing sister. She likes to do ballet and play piano. She also likes to read a lot. I do feel like it can sometimes be a challenge. It is interesting to be asked questions like ‘What is Down syndrome?’ and say what I think about it. I think of Down syndrome is not realy a dissability. I think that living with a sister with Down syndrome is good in general. I do not know many other kids with Down syndrome, but the ones I have met are very nice and respectfull. They seem similar in some ways to Penny, but they look different than Penny. Some of them also talk a bit differently than Penny. 

One of my favorite things about Penny is that she is very kind and respectfull. One of the things about Penny that I don’t like as much is that she takes more time than me and my younger sister. I think that Down syndrome does have an effect on that because it gave her a lower muscle tone that makes her slower. I also think that it is a good exercise to have to calm it down and go at a slower pace.

I do not feel jelous of Penny becasue I would not realy like to have Down syndrome. Penny has scoliosis which is not common, but part of the reason she has it might be Down syndrome. She has to have a lot more doctors appointments in far away places because of scoliosis. She also wears glasses which most kids with Down syndrome do, but I do not. There are also a fair number of appointments for that. I would say to kids with siblings of kids with Down syndrome is that you should try to be very patient and kind with them because they are wonderfull and important. I think that Penny is a blessing and a gift. 

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This Post Has 6 Comments

  1. Avatar
    Linda Morrow

    Both responses are so sweet, but William’s brought tears. I have an 11 year-year-old granddaughter and found William’s comments insightful and amazingly articulate. You have a great young man you are growing in Connecticut !

    1. Amy Julia Becker
      Amy Julia Becker

      Thank you, Linda– I am really grateful that all of them get to grow up with each other!

  2. Avatar
    LB

    This is lovely!

    1. Avatar
      Michelle

      So very sweet. My 3 yr old Joy has 4 older typical brothers, ages 24, 21, 7 & 5. The big boys are grown n gone, but the little ones are so sweet to her, very understanding and most of the time patient and kind. Life is exciting. God bless your family with more amazing love.

      1. Amy Julia Becker
        Amy Julia Becker

        Thank you and that sounds like big brothers who are exactly right–pushing her sometimes and mostly patient and kind!

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Hi, I’m Amy Julia.

I write about faith, family, disability, and privilege.

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