Wednesday, April 13, 2011

Looking back

Dearest Lily,

Last Friday we flew to San Diego for your cousin Emily's wedding, just you and Daddy and me. The wedding was as elegant and lovely as the bride herself.



*Jason, Mackenzie and Josiah

Lots of family and friends who've never met you were there, as well as loved ones who have only seen you once or twice before. The wedding was just as much a family reunion as a marriage ceremony, and you spent the weekend being passed from one relative to the next.

*you and your beloved Uncle Nick

*Naomi...your other mama:)

Although I missed your brothers and sisters so much, I loved having you all to ourselves for a few days. You are the easiest baby to take traveling, in spite of a lingering cold and teething pain.


Daddy spoils you so much when it's just the three of us, I pretty much have to peel you out of his arms to get a chance to hold you myself.

In the airport an older woman stood next to us in line to board the plane. She was staring at you for awhile before she asked, "How old is she?" (I seem to get this question a lot more often than I did with all your brothers and sisters at this age. I think it's because you're so tiny, yet you hold yourself like an older baby.) I told her your age and she smiled, leaned over and stroked your cheek. "She's beautiful," she said, staring in your eyes and smiling even brighter. I can't explain why, Lily, but I knew she knew.


It really isn't that it bothers me anymore, but I just wonder so many times if I will always be asking myself if people know you have Down syndrome. I wonder if those unspoken words will always seem to be hanging in the air. It's like I see a look come over people's faces and I know they know, and I almost want to blurt it out- "Yes! She does have Down syndrome!" It's not that I'm mad or even sad, I just feel like I want those words out there, and yet it seems so awkward to answer a question that hasn't been asked.



On the way home from the wedding, a woman and her teenage daughter were smiling at you in another airport line. Again, I wasn't surprised by the question, "How old is she?"
"She's almost 15 months," I replied, smiling as well, "She's tiny for her age."


"My niece is tiny too," answered the kind mama, taking your hand in hers and gently stroking it. "She has a chromosomal disorder ...."


"Down syndrome?" I asked, relieved for the opportunity to just get it out there. "No, but is that what your daughter has?" asked the stranger, "because you can't even tell!" But I knew she could, and she looked uncomfortable with her choice of words.


I answered that you do, and her daughter looked genuinely shocked- "She does?" she asked and studied you more intently. "You'd never know!" her mother reiterated. She went on to tell me about the rare chromosomal defect her niece has; as a result she is deaf and mute. I listened as she told me how proud she is of her niece, Sophia, who is learning to sign to communicate, and what a blessing she is to her family.


I was so caught up in her story, but your daddy was motioning us on; our flight was minutes away and we had to leave. "Your daughter is beautiful!" our friend called out, as we waved goodbye and hurried on, unspoken words of understanding still lingering in the air behind us...


I read a book a few years ago, when I was pregnant with your brother Noah, a book named Jewel.

The story is about an older mother who gave birth to her sixth child in the 1940's. She learned when her daughter was four months old that she had Down syndrome, and the book details the challenges Jewel faced in raising her.


Actually, I started to read that book, but I put it away until Noah was born.

At 20 weeks, a marker showed up on Noah's ultrasound- an "echogenic focus of the chordae tendeneae". For eight weeks we waited for a second ultrasound to be done. During those eight long weeks I read every piece of information I could find on what the odds were for having a baby with Down syndrome, based on that specific marker. Those bright spots on the heart magically disappeared on the follow up u/s, but truly, Lily- I never relaxed until Noah was placed in my arms, a "healthy" baby with as many chromosomes as all my others.


I picked up Jewel again a few months after Noah was born, and this time I read it all the way through. It was a beautiful story, but still not something I ever wanted to embrace. I remember being so relieved that I could close that book and disassociate myself from the characters and emotions it portrayed.


And now here we are, seven years later...

I saw that book the other day, sitting on the shelf at your brother Jason's house. I asked Naomi if I could borrow it- I wanted to read it again, just to see what it felt like from this side of things.


I thumbed through the pages, this time from a different perspective than the fearful mama of seven years ago. I blinked back tears at the phrase "Mongoloid Idiot"- that antiquated term doctors used just a few generations ago, and cringed at the thought of babies being institutionalized because it was "for the best."

But I caught a glimpse of myself in those pages, that pre-Lily mama of yesterday... Uncertainty and unfounded fears were in her questioning look, and unspoken words left hanging in the air...


"She's beautiful!" I told her...and waved goodbye.

Love always,

Mama oxox


Anna Theurer said...


Great post as always and lovely photos of sweet Lily. I sometimes wonder if people know that Ellie has that extra special chromosome and sometimes you just know--like you said "and I almost want to blurt it out- "Yes! She does have Down syndrome!" It's not that I'm mad or even sad, I just feel like I want those words out there, and yet it seems so awkward to answer a question that hasn't been asked."

Melissa said...

I think I'll always wonder if people 'know' too. It doesn't bother me one way or the other, but I still wonder. I wonder if the 'she's so beautiful' comments are just that, or if they mean something more, something unspoken.

I read Memory Keepers Daughter long before Claire and didn't like the book at all. It felt unemotional and flat, and now I wonder what I think of it from this side...

Heidi Ehle said...

I always always want to just squeeze her. :) She is so darn cute! I'm always kissing on Liddy for the same reason lol

Stephanie said...

AH, Great post!
And that last photo , seriously? Emmie gives me that look. It's the look that makes your heart swell until you have to look away because you actually feel like your heart will burst if you don't. You know?

Mrs. K said...

Tears of joy for my BEAUTIFUL Lily and the family you were born into. Tears of sadness for the little ones cast aside. They, too, are BEAUTIFUL, as all God's children are BEAUTIFUL.

Can't believe how long your hair is Lils. WOW! Please tell Mama that Grammi would love a copy of the last picture. It is so hard to decide which one I like the best each time your picture comes into view. I can see me in you when I was young. I love the picture of Jason, Mackenzie and Josiah too. And the one of Daddy, Mommy and you. What a handsome family!!!

Mrs. K said...

Just read the comments and it is funny but I just picked up The Memory Keeper's Daughter not even knowing what it is about. Now I have a hint.

Unknown said...

beautiful post. : )

Rebecca said...

She is just beautiful. I love the dress that she wore to the wedding and just plain everything else about her! :) Thanks for sharing!

nicole said...

She is beautiful . . .

Rochelle said...

Beautiful post as always. Beautiful girl, beautiful mama. Thankful for that extra chromosome that brought you into our lives!

Rachel said...

beautiful letter as always...and beautiful children:)

cathy said...

she IS beautiful
from both sides...


Unknown said...

yes quite simply she is utterly beautiful. questions hanging in the air is part of our world as well...i tend to pop them like balloons by blurting out unasked for info as i too cant stand them and i have a big mouth! lolxxxx

Anonymous said...

In tears as I am with most all of your posts!! You have a way of writing so beautifully what goes through my mind so much as well.

I LOVE the wedding pictures. Your whole family is just beautiful. That picture of you and Sam and Lily is perfect.

I was at an appt. the other day for Abigail. A lady was looking and looking at Benji. She even turned around to look. Then, she turned around and looked at Mary. I think she was comparing them or something to see if he looked much different from my other kids. At least that is what I thought she was doing. I do not always notice these things, but this time it was so obvious that she was very curious. I am getting use to it now, but it is there. I totally relate with this.

Wow, so interesting how you read that book. God was preparing you even years before. He prepared Jon and I in so many ways that I can look back on now and see clearly. I had no idea then. How good He is.

Much love to you!! Rallying the votes for my very favorite blog!! Love, Cara

Tiffany said...

Lily looks like such a cheeky little monkey. She's so precious.


Crazy Beautiful Love said...

That was beautiful! It made me tear up. I too get the same question about Eslea and her size. I can always tell when people are watching and thinking...wondering if my perfect little one has down syndrome. I find myself wanting to make them comfortable with it bc I'm so OK with it all I guess.
Lily is beautiful.
BTW- I felt the same way when I first read "The Memory Keepers Daughter" and have of course, now reached the other side of those feelings.

Ilisa Ailts said...

Great post! I wanted to say how "growing up" Lily looks in that last picture. She is a doll, as you know.

I know what you mean about those lingering words. I'm sure people do not want to offend or may even take pity on us and feel sad for what we have. I take each case on it's own and sometimes find myself wanting to share because it is just so special.

JC said...

Loved the pictures of Lily in the jumper, she's just so darn cute!
And you described what I feel perfectly...When people come up to Russell there are times I KNOW they KNOW...And it doesnt bother me, but I feel the need to have it said, have it "out there" I dont know why that is, I just do.
Anyway, great post Patti :)

Anonymous said...

She's so beautiful!
Would you be able to let me know who the Auther of that book is? I would love to read it.

csmith said...

Lily is beautiful! I'm one of those people who always wonders what's ok to say to parents of kids with DS. Since we have become interested in adopting a special needs child I notice them everywhere. Just last week our family went to an amusement park and I was waiting in a line with my 5 yr old. There was a mom with 3 or 4 young kids and one had ds. She was maybe 3 or 4 and so cute! So cute that my little girl pointed her out and said "that little girl is so cute Mama". I just agreed and smiled at the other Mom but I wanted so badly to talk to her, to ask her questions, but it didn't seem polite. What if the little girl DIDN'T have DS, would the Mom be offended at my assumption and if she did does this woman even want to talk to a stranger while she's out enjoying time with her family? So I never say anything beyond "your child is so pretty".

Unknown said...

Reading through your posts,I got so teary eyed. I havent had a computer cord so I had been lacking from catching up on my blogs lately.
I am glad I came across yours to read, I could relate to it so much. While my daughter has Williams Syndrome they are a lot alike. I constantly still get asked, how old is she, while i respond with 3, they say oh my goodness shes tiny for her age, and either follow up with a story or leave it with that. Skylar is on the lower end of the spectrum for the facial defects that come with Spectrum, but high with delays, weight gains and other areas. So when they lookat her if you dont take notice to her larger eyes or pug like nose they normally think "what is wrong with her"

We only recently found out Skylars diagnosis about 7 weeks ago today so for a while when they asked me that I never knew much of what to say besides "she was premature" now its like i try to act like they didnt even ask. its to much to explain... ah im like rantingo on your page i am so sorry

she is SO beautiful and such a blessing. I am glad you guys just some time the three of you. Thank you for this post

Unknown said...

Your blog is beautiful, I love the idea of writing letters to your daughter. Her eyes are amazing. The bluest blue, I've ever seen.

:) I can't wait to read more.