Thursday, December 22, 2011


Fiona is stunningly beautiful. Strangers go out of their way frequently to tell me this. Specifically, her eyes. They are breathtaking, spectacular, absolutely stunning, just to name a few of the comments. Not one of them sees anything different. I know this, because the few I do feel the urge to tell she has Down syndrome, their mouths hit the floor as the response is always . "Really?! I don't see it". While babies with Down syndrome are stunningly beautiful, she is beautiful in a completely normal, mainstream, non-Down syndrome type way. I have talked to moms of kids who are autistic about the struggle of people not being able to look at your child's features and know they are different. The white elephant that is in the room when people don't know why your child isn't talking, or is acting odd, or is behaving outside of their age group. While its a blessing that people don't judge at first sight, it forces you to have conversations you'd rather not have.

I chose to hold my tongue today. Another person mesmerized by Fiona's eyes made their way over to comment on how beautiful my baby was. And the ever looming question came up quickly. "How old is she?" This is the big give away. My answer always raises alarm, that, depending on how forward the person is, leads to either a white elephant in the room or them carefully asking questions to find out what is "wrong" with her. She is tiny. Even for a baby with Down syndrome.She falls in the bottom 20th percentile on the Down syndrome charts, and is a good mile below the normal charts. But this particular lady's alarm never went off. No pause, no hiccup, no extra long once-over on Fiona to figure it out. She just accepted her age and her size and told me her granddaughter was tiny like that but its nothing to worry about, she'll catch up eventually... "she is just so beautiful". I almost told her, " No she wont catch up" but I stopped myself. Why? Why unveil that Fiona is different when there is no need to. After all, she is "more alike then different" and that is how I want people to see her. And that is how people see her until I open my big mouth. My biggest motivation for telling the random stranger that she has Down syndrome is they just got done showering her with praise and I want them to see the value in her life- in all babies lives with Down syndrome. I want them to remember her face when they are confronted with their own baby's Ds diagnosis or someone close to them is told they are carrying a baby with an extra chromosome and remember the beautiful, well mannered, happy and content (other compliments frequently given) baby they were so entranced by that they went out of their way to get a better look at her. I want them to remember how normal our family was- out to lunch, laughing, scolding toddlers, sharing drinks and dotting over their baby girl. But sometimes, I stay silent. I enjoy the moment of really being perceived as normal. Of really being normal.

Life is very normal now. Except for weekly therapy sessions, there are no obvious signs of different. Life is filled with chasing 3 year olds, cleaning up messes, redirecting crawling baby, taking unsafe objects out of her path, breaking up fights over toys and who gets to sit where, cleaning up messes, changing tiny diapers and wiping toddlers butts, meeting up with other over-worked/amazing moms for play dates, strapping kids in car seats, cleaning up messes, watching Christmas movies and reading books, and tucking babies in bed. Fear of encountering the hard moments of loving and caring for someone with special needs always lingers, but its faint and far in the background for now. Right now, the only special needs I see is carrying my baby and helping her hold her bottle. I am okay with that. No, I love that.

Today I learned that I completely failed at teaching my kids about Christmas. I have spoiled, selfish kids... or, in other words, I have three year olds. To them, Christmas is about presents. Balancing the two Christmases is a lot harder then I thought it would be. I am becoming more and more aware of how palpable their minds are and how important what I feed them really is. A four year old in my Sunday school class was humming a Ke$ha song while he played with cars and I stopped in my tracks, thinking, what do I play around my own kids? What am I feeding their minds? What do I put emphasis on in our home? What do my kids see that I value? Our candy advent calendar is up to date, but we are ten days behind on our Jesse Advent Tree. We keep pouring our energy into the illusion of Santa, elves and reindeer, but rarely talk about the nativity, the miracle, or the gift God gave us. Every year since the boys where born, we have loaded up bags of under-used toys and brought them to Good Will a few days before Christmas. Last year, the boys helped pick out toys and somewhat understood what we were doing. There was a lot of whining about giving away those toys. But this year, if Charlie and I hadn't stepped in, there wouldn't be a single toy left in our house. Even after ample explanation that we were giving these toys away for ever, they wanted to give away everything. I had to go through their piles and remove things like their Thomas trains and other toys I knew they were not ready to part with. When we got home from dropping everything off, Gavin comes running to me with sad eyes and says, " I miss my big green race car" I started flipping out. He had put it back in the bag after I had taken it out, knowing that he was not ready to get rid of it. After telling him that there was no way we could get it back, he says, "That's okay mom, the other kids will love it. I wanted to share." That is what I want my kids to get about Christmas. And in between the whining for toys and begging to open presents, he got it. Selflessness.

Gavin putting the green race truck in his give away pile.

I had no intention to do another post before Christmas, but I just felt like writing tonight. I realized, most of the time I don't really write, I just narrate about the pictures I post. I semi considered leaving pictures out of this post all together, but I couldn't resist a few to carry you through all the words. I get asked/told a lot I should write a book. I don't think I am there yet. I wouldn't have enough to fill a whole book. I am still waiting for my big defining moment. Both me and Fiona are still babies with this Down syndrome thing to write anything accredited about that, and my faith is also a work in progress. Plus, with a baby sister who is a linguistics and English major, I have to make sure my writing is really up to par :) At least I know who to go to if and when I need an editor. For now, I will continue to release my energy here and enjoy the writings of others who have something to say that takes longer then two minutes to read.

My Christmas gift came a bit early, and I am thrilled I will be getting to take my whole family home to Michigan with me in a month for a visit. Real snow for my boys! Forget Christmas, let the count down to Michigan begin :)


  1. Beautiful post as always. I hope there is snow in Michigan because I am slightly sad it will not be a white Christmas here in Northern Indiana. Have a wonderful Christmas with those precious kids of yours!

  2. We've focused more this year on what Christmas really means and why we celebrate...and the boys are so thrilled that Jesus loves us so much that He sent Santa..that was the explanation they came up with cute..just about bowled me over...

  3. Maybe it is because Liddy is so young that I don't get the obvious stares that all too often come with having a child who is obviously different. Maybe I'm blind to the signs that she is. But she is captivating for everyone she meets. Her smile, her laugh, her adorable dimples, and yes her stunning eyes draw people in like flies to honey. I never see DS when I look at her, even though I look for it. I always just see my beautiful baby.
    Teaching our kids selflessness is a difficult task, especially since it is such a difficult concept for a whole lot of adults to grasp. Kudos to you and your husband. You're obviously feeding their minds exactly what you should be.....
    Merry Christmas!

  4. The day you write a book, I'm buying!! A lovely post...Little Fiona a perfect beauty, inside and out :)

    Merry Christmas Shannon!

  5. The same thing happens to us when we are out. People are always saying how beautiful/cute Kamdyn is. The other night, a lady at Chik-fil-A kept smiling at her and saying how cute she was. I went to get some napkins, and she asked my 5 year old when her birthday was. She has no idea, so she waited until I got back to ask me so she could tell the lady. People are usually shocked when they find out how old Kamdyn is, and sometimes I want to mention Ds for the same reason you said, but lately I haven't been saying anything other "thank you." Fiona really is cute. She looks a lot like your other children too. I hope you guys have a Merry Christmas.


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