Thursday, February 24, 2011

I Learned Something About Down Syndrome Today Too

Dearest Lily,

Yesterday I read a very honest and insightful blog post about one man's encounter with a girl who has Down syndrome. It was called Today I learned Something About Down Syndrome.

Here is what I read, (and I am using this with the author's permission)...


I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.

My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me")
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Lily, in all honesty, when I read those first two paragraphs...I cringed a bit.

Before I had you, I never thought twice about saying "Down syndrome child" or "Downs baby". Now I find myself a little defensive when I hear or read those words..I never really "got" people-first language until I had you. I am not a huge fan of political correctness- I think if we continue to ban certain words, people will just find new distasteful words to replace them. Changing words isn't as effective as changing hearts. Having said that- words do make me, as a parent, feel a certain way. Hearing someone refer to you as "a Down syndrome child" honestly does- right or wrong- make me feel like people think of you as less than human. As in- there are baby girls, and baby boys...and then there are "Downs babies." Like you are in a category all by yourself, somehow...sub-human.

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When in reality, you are a beautiful, healthy, and adored baby girl..who happens to have Down syndrome. Which is why I changed the way I say things after I had you- not because I am such a big fan of political correctness, but because of how I personally feel when I read or hear those words. I would not say "so-and-so is a cleft-palate child"...he is a child who has a cleft palate. Just as you are not a Down syndrome baby. You are a baby... who has Down syndrome.


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I continued reading that article yesterday, because I really did want to remember what it was like to be someone who was not well aquainted with Down syndrome. Because it wasn't that long ago that I was just as unfamiliar with what an extra chromosome means in real life...


So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions.)

And I realized that much of my defensiveness of you, Lily, and your extra chromosome, is because I truly don't want people to see you as afflicted with anything. And while I really do believe that children with Down syndrome are "more alike than different"...in reality there are a host of issues, physical and mental and even societal, that set you apart.

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The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants. She goes about her business with extreme diligence and a broad smile.

So I was sitting there working on a quote for a customer, when my fear became a reality. The relative quiet of the establishment was broken with the words, "So how are you doing today?" I glanced up to see the beaming young woman looking right at me. With a small amount of anxiety I replied, "I'm doing great. How are you?"


In reality, I just can't get around the fact that people might be uncomfortable around you some day. I can do my very best to shield you from that, and hide the hurt that comes, like an arrow to my heart- when I see the pity in someone's eyes who recognizes that you have Down syndrome. I can pretend not to notice when someone asks how you're doing, with a hint of pity in their voice...when everything in me wants to yell, "Lily is fine! She's happy and wonderful and a blessing and we love her and really- she's not a victim!"


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I went on to read...

It seems impossible but her smile got even bigger. "I'm great too but thank God it's Friday." With that she waved and walked off to continue dusting the Tazo Tea display.

"Thank God it's Friday?" Did she really just say "Thank God it's Friday?" Does that mean that there's a discernible difference between this day and any other day in her life? That perhaps a Saturday spent with family or friends, or by herself, is an appealing alternative to working her shift at Starbucks?

Does this mean that she doesn't just meander her way through the day oblivious to what's going on around her? She has good days and bad days... not just "days?"



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I am beyond guilty of not understanding the nuances of life that a person with Down Syndrome experiences. It never occurred to me that she would have a thought like "Thank God it's Friday." I assumed that every day was the same for her and others with Down Syndrome. In my ignorant mind they seem blissfully disconnected from the challenges of day-to-day life.


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I realized at that moment that I know nothing about Down Syndrome and I let my fear and assumptions dictate how I would interact with people like her.

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She walked back to me, carrying a tray of Dixie Cups. This time I noticed her name tag: Stephanie.

"Would you like to try a Caramel Apple Spice?"

"Sure." She stood, waiting for me to taste the drink. I did. I didn't like it.

"How is it," she asked?

Up until about five minutes ago I would have avoided telling her the truth, fearful that I might hurt her feelings or confuse her.

"Actually Stephanie, it's too sweet for me."

"Yeah, too sweet. I don't like them either." She strolled over to the next customer. "Would you like to try a Caramel Apple Spice?" She points at me. "He thinks they're too sweet."


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Stephanie walked back to me with a look of slight embarrassment. "My name isn't Stephanie. It's Amber. I left my apron home and had to borrow Stephanie's."

I'm glad that I met Amber. Maybe now I will ignore preconceived ideas that are based on nothing other than vague, uninformed impressions, and realize that the Ambers of the world, just like me, can't wait until the weekend arrives.

Or maybe I'll just continue to meander through the day, oblivious to what's going on around me. I have a lot more practice doing that.

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So today I learned that we have a long way to go as a society. We've come so far- it wasn't too long ago that moms were placing their children with Down syndrome in institutions, fully believing that they were doing what was best. But we still have a long way to go, as far as changing perceptions about our children...because honestly, I could very easily have been that person in a Starbucks a little over a year ago.

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And even though I knew that termination was never an option for me, when we were told during my pregnancy about the possibility of you having Down syndrome- I still had to come to grips with the uncomfortableness of it all.

Yet all it took, to shake those preconceived notions of what it meant to have a baby born with Down syndrome...was you.

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This morning I looked at my feedjit to see who was coming to visit you. As always, there are visitors from all over the United States, and some from around the world as well. And as always there were words that caught my eye....words that revealed one fearful mama's heart- and I'm assuming she just received a prenatal diagnosis of Down syndrome..

Iceland arrived from google.com on "A Perfect Lily" .. by searching for Which doctor must i go to to have abortion?.


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Although those words pained me, they also gave me hope...because while that mama was searching for an end to what she perceived as suffering...she stumbled across you- a perfect Lily.

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And while I don't know if that encounter- with your beautiful face and the words of our dear friend Courtney underneath ...

Our children arrived exactly as they were designed. They are a direct and unmistakable gift from God. He has given us children capable of copious amounts of unconditional love because we haven't been open to receiving the more indirect ways He's been showering it on us for the previous years of our lives.

...was enough to change her mind- I pray it was.

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Because I do know it made an impact on this mama...

Hi Patti,

I just wanted to send you a quick e-mail letting you know that I used the Courtney Heigele quote you have on the top of your blog in a comment I wrote on a Norwegian blog. The blog is written by a young mom of a gorgeous little boy with Ds, and the post I had to reply to was about the debate currently going on in Norway about ultrasound in week 12 of the pregnancy. Every pregnant woman in Norway gets called in for a free ultrasound in week 18 to check that the baby is healthy in the womb. The debate now is that it is possible to detect illness earlier in the pregnancy so that it is possible to have a medical abortion before the pregnancy progresses further. This is a sensitive subject, and there are public voices that are negative and not well thought through. The lack of compassion and empathy upsets and scares me, and that was why I felt compelled to comment in support of diversity in the society and I rememebered the beautiful quote I had read on your blog and included it in my comment.

I'm sorry if it seems weird to receive an e-mail from a woman in Norway, but I just felt like I had to send you an e-mail letting you know that your blog is read up here too, and that I'm thankful for the way that you make a difference with your words and kind heart.

Sincerely,

Kjersti Storrø-Trana (a 30 year old mom of a soon-to-be two year old boy with "only" 46 chromosomes who has had her heart and eyes opened thanks to the www!)




as well as this mama from Vancouver, British Columbia...


Hi Patti:

I hope my email reaches you.

I stumbled upon your blog by reading a post that Roger Fallihee wrote. A friend had posted it on her Facebook page and somehow or another, I ended up reading your blog. I honestly thank God and the stars and the universe that I found your letter to Lily.

I have a daughter, who is 9 months and she was born with mosaic down syndrome.

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Your letter touched me so deeply because it is EXACTLY how I have been feeling and EXACTLY how my husband is with our dear Kaitlyn. She is Daddy's girl. She spent nearly 6 weeks in the NICU at our Children's Hospital. I won't go into all the details, but it was hard and I know you understand. It's just nice to come across other Moms who "get it" and don't pile on the "oh, I'm sure everything will be fine" story. Kaitlyn is teaching me soooo many magical things and I adore her, but there are still days that I grieve or feel sad; and not everyone understands those emotions.

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I just wanted you to know that I'm another Mom who is so very thankful for your honesty. God has worked his magic again... just when I needed it most.

Take care,

Heather


And so, dearest Lily, today I learned something about Down syndrome as well...

I learned that it doesn't always take a lot to change how people view a person with Down syndrome. It doesn't necessarily take a lot of money, or education or effort. Sometimes - for the open hearted- all it takes is one simple encounter.

Whether that's with a diligent employee named Amber, who has a smile that lights up a room, or with a beautiful and perfect Lily...

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We're going to change the world, one heart at a time.

Love always,

Mama oxox

45 comments:

Alyssa B said...

what a beautiful beautiful post!

NikkiB said...

So eloquently written as always!! I so envy your ability to "write your heart"!! You've opened my eyes to so much as well. Love you guys! :) Also, those PJs (I think) in the first pictures w/ the vibrant colors.... I ADORE them! SOOO stinkin' cute!! LOVE LOVE! :) :)

jane@flightplatformliving said...

beautiful, it made me cry! LILY YOU ARE SO UTTERLY ADORABLE! I have never wanted to jump into a picture so much and cuddle a baby in my life! our babies are so wonderful, my baby is also a perfect gorgeous girl just like you who just happens to have smith magenis syndrome. I was also that man in the cafe before my tilly but not now! your mummy's words are beautiful as are you xxxxx

Ginger said...

That's exactly how I feel about adoption. People ask me: Are they adopted?
And I want to say: They were 3 years ago, but now they're just Clarks.

{sigh} People won't learn if we don't' teach them.

kecia said...

loved this post....loved that article when I read it the other day! You have such a great way with words!

Sydney said...

Such an insightful and deep post!

Today my friend and I were asked to watch a presentation over Down Syndrome. While we were discussing it afterwards, she said, "I'm always so worried that my baby will have some kind of disorder. I don't know why. I just want a healthy baby." I didn't say it, but I wanted to tell her, "Having Down Syndrome or anything else is not a bad thing.You can still have a healthy baby, even if they do have Down Syndrome."

I've learned so much from you, Patti, and I know I will never be the same person I was before. Thank you for being such an inspirational Mom to so many of us out here!

P.S: Lily is the cutst baby ever, as always. I love the pics in the hot pink outfit!!!

Anonymous said...

I read that blog too and it was hard for me to read at first. That is what your Lily is doing- changing hearts one at a time! Much love Patti, Cara

Naomi Rice said...

That made me cry thinking of Jennifer too. I want so desperately for people to know that she is a human being first before her disability. It was written so beautifully I hope that everyone can come away from this post with new understanding...

Julia said...

I just have to tell you that I think you've really found your voice Patty. Your post are more beautiful each time!!<3

Candy said...

Once again you have gifted me with a holy touch on my heart today! I learn something new about all of life as well as Down Syndrome each time I read your story and especially see the pictures of Lily. Thank you so much once again! I learn so much from you about how to talk to people and sort out my own thoughts.

Amy said...

WOW! I pray for that Momma who was seeking an abortion! I believe it was in God's plan for her to read your blog. I think she will be back to your blog again and again - while holding her new baby!
Blessings,
Amy

Danielle said...

the fact that someone would even goolgle where to get an abortion KILLS me. KILLS me. I just lost it when I read that. How would someone posting that find your blog? Must've been god. ooo my heart. these precious precious babies. Very well written. love you patti

fckopp said...

Cannot decide which is more beautiful...your words and insight or my precious Lily. She is getting so much hair, looks just like yours when you were that age.

Patti, you have truly found your calling, I believe you are doing exactly what God's had planned for you while you were yet in my womb.

I hate, no I am proud, to say "I told you so", God would not give you something you could not handle and a child with Ds is no different than a so called "normal" child, well, perhaps a tad sweeter like our Lily Anne. Oh I could just squeeze that Kaitlyn.

Abbi said...

I love that little baby. "She is ADORABLE! I" love her smile too. I wish it was" Thanksgiving, cause then I coul'd say that, I am sooo thankfull for, Lily....And I'm soooo thankfull for, God.....AND I am thankfull for, My Mom And Dad.
I coul'd GO ON AND ON AND ON! I coul'd problibly say about....Maybe 10 things that i'm thankfull for: WAIT, I DIDN'T SAY I WANTE'D TO SAYYY THEM! Never-mind......I am thanfull for my sister(Mackenzie).....I am MOSTLY thankfull for the, World.....Thank-you-god.

Abbi, the 8 year old:P
I am soooo funny.....love, Abbi the 8 year old.

Deanna said...

Ok, I know you're like this huge celebrity now, but does this mean that you no longer read my blog??? I can't believe it's been half a day and I haven't gotten a peep out of you on my last post. (-:

BTW, love this post. Beautiful, as always...

Kelli said...

What a beautiful post Patti...HUG.

cathy said...

Beautiful, beautiful post, Patti....so eloquent and heart wrenchingly honest

xoxo
cathy

My Little Wonders said...

An absolutely beautiful post! And Lily is gorgeous. :)

Ilisa Ailts said...

Oh Patti! Great post and I love the fun sleeper in the first pics with her brother!

It's amazing, all of this, isn't it??

Jen said...

I stumbled onto this blog & it is so wonderful and such a blessing! Thank you so much for writing & sharing your story and your days, Patti & Lily!!! Love!

KWQR said...

I read that blog post yesterday as well... love what you wrote about your reactions to it. When I think of my beautiful Quinn making people uncomfortable it breaks my heart. I hold great hope that by the time he reaches adulthood the world will be a sweeter, more accepting place. Your Lily is gorgeous!!
Cheers,
Kate

Jennifer said...

Beautiful post. Thank you for sharing.

blessingsandglory said...

Patti this is beautiful. Your words are spoken right from the heart and they shout the truth. We so often get wrapped up in the big things {I know I do} and forget to keep it simple. That by simply sharing our stories, our lives that happen to include Down syndrome we can change the world one heart at a time. I love your heart and your passion - for the Lord, for life and for your children. And as for Miss Lily she is just darling!

Libby

Erin B said...

I was told while I was in labor with my very sick little daughter that her hydrops fatalis was probably due to her having Down syndrome. I spent the next two hours battling with thoughts of struggle, neglect of my older daughter, and what other people were going to think. Shortly before she was born I realized that this beautiful little girl was God's child and there was no way I could love her any less, or any more! The blogging world (including yours and The Squibbs) have opened my eyes and my heart, thank you from the bottom of my heart!!

To Love Endlessly said...

Beautiful post Patti! Perfectfully put. Thanks for sharing with me/us.

Janie Fox said...

Love this. She is a doll. You are too. I have a new granddaughter with DS and she is fabulous! Perfect just as God made her!

Kjersti said...

Hi Patti!

Thank you for including my e-mail in this post. I just had to let you know how you and Lily has touched me and made me more aware through your blog. The www is amazing in that way.

Warm thoughts from snowy Norway, Kjersti!

Bridget said...

Beautiful post Patti! :) Lilly is a sweet pea!

Anonymous said...

I am the mum of 4 children 3 of whom are disabled. My 16 yearold has Smith Magenis Syndrome. She is sitting upstairs watching a dvd and I am downstairs , in tears, at your wonderful letter.
What a lucky little girl Lily is; and she is perfect in every way. Yes lie ill present challenges to you all but the joy will be immeasureable. Hazel

Beth @ Our Typical Life said...

You have just said everything i feel that i cannot put into words. I found your blog posted on my fb page, and am so glad that i clicked the link. Thank you!

I am writing a series of posts for next week (March is Trisomy Awareness Month) and I was wondering if I could feature you, Lily, and some qutoes from this post.

We need to get the word out the Down syndrome in not the evil, disgusting thing society makes it out to be. This post could do that!

Again, thank you!

Lori said...

"Saving one starfish at a time" applies to this too - one person at a time - and then as the old shampoo commercial goes..."and that person tells that person, and that person tells that person, and that person tells that person, and so on and so on"...do you remember that commercial? This family is very thankful for little lily and all she has brought to our family, and for your blog - I've said it before but you will never know the impact you have made on us until you have a heavenly view!! Thanks - and Happy 4 days until your Birthday!!:)

nicole said...

So thankful to Mr. Fallihee for being honest and humble enough to share his learning moment. There's a quote that says, "God's instruments are always humble." And Patti, your humble, loving words coupled with Lily's sweet pictures are changing hearts. Oh, that all the babes with Ds would be given the chance to live and shine and transform us with their humble presence.

patsy said...

ok patti, you always get me crying! this post had me seriously crying, like had to keep stopping to get more tissues to blow my nose and wipe away the tears just to be able to read! but words could never thank you enough for posts, just like this one, to help people see the beauty in our sweet babies blessed with that magic chromosome :) i guess that i forget, or rather block out, that others think of our girls any differently than we do. but praying, one person at a time, that we can help them see just what we see....

Jodi Lansink said...

great post---love all the pictures of you beautiful baby girl!! LOVE the little toes picture!!

kecia said...

hey-with your feedjit...how did you know how the visitors came upon your blog?

Patti said...

Kecia- you click on "real time view" on the feedjit box and a new window opens, with more details.

Race Bannon said...

I talked to Stephanie, the other Starbucks Girl...sorry, the girl who happens to work at Starbucks...she said there is more to this 'missing' nametag thing, it has to do with scheduling/night shifts, etc., anyway, she confirmed, when you work at Starbucks - everyday is like Friday! Sorry Kenzie, its true.

Lizzard said...

strange... I find myself sitting here reading your post and tears are streaming down my face... I can't even figure out who I am crying for. I think that it is for the man who wrote the post (and his honesty and the journey he just took and his ignorance and his enlightenment) or maybe it is for me (who considers myself progressive and smart and a good mom to my 3 beautiful children [who came to me with challenges in their own rights] but still counts myself ignorant) or is it for you (and your fierce love and protection for your perfect daughter)...
Thank you for this beautiful post and the incredible juxtaposition between perspectives which outlines that we are all on different spots on this life journey but we can all reach out to lend a hand to one another.

Kellan's momma said...

Patti I loved this post! I cried reading the mans encounter, cried for my son, oh do I pray to God that no one ever sees him the way that man saw Amber, unless of course he opens their heart at the same time. I commit to my son, and Lily, and all the other Kellan and Lily's, I will change as many hearts as I possibly can. I love the e mails you received, too. Thank you for sharing them, thank you for blogging, thank you for making our kids' world a better place.

Cole said...

Your words are always so tender and insightful Patti- but this post was so spot on. One heart at a time. It makes a difference!

Heather Morovic said...

This is so beautiful Patti, and thank you so very much for including our dear little Kaitlyn; may she bring many smiles to your followers, just like your dear little angel Lily is doing too. God bless our magical children xo

Mommyto3andahusky said...

I just found your blog and became your newest follower. Wanted to say hi! :)


Your baby is sooooooo cute!!! Love her!!

Rain said...

What a beautiful story...made me cry!! And yes I think I would be one of those people too before I had my son maison who is 2.5 years. He is the light of my life and life is good. He has taught people around him.....when i needed to go back to work and was looking for childcare I had difficulty as many people wouldnt take him once they found out he had down syndrome. Obviously also i wanted him to go to the right person whilst I was at work. Those people now see him at mainly music etc with his carer who is perfect for him and had no problems with him right from the start they think he is a lovely wee boy and indeed he is. Not very different from any other 2.5 year old! Since then I have had offers for them to look after him...but we stay with the carer that had no problem right from the start.

lyn clark said...

I beautiful mom and beautiful lily.I stumbled across this beautiful blog.My sweet beautiful daughter as Down's Syndrome.Katie is just 4 she is beautiful smart and funny as I am sure Llly is.What a wonderful outlook and perception you have your words are my feelings exactly.love and best wishes to you and your family
lyn clark Uk xxx

Jane said...

I have a Daisy. At 9m shes one of the sweetest characters I ever met. I really didn't want a girl, but I pick her up and run round the house every day screeching how joyful I am to have a daughter. THIS daughter. And she giggles, and chews her fingers while laughing at me. She has made my heart so very very happy.