Friday, August 5, 2011

two minutes in Holland

Dearest Lily,

It's late at night, and I'm ready to call it a day. Your warm, sleep-heavy body is molded into my lap as I sort through photos from our day, your tiny contented sighs muffled by the purring of our sound machine, set as always to rain.

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There's so much on my heart that I want to say to you tonight, dearest Lily. Thoughts triggered by discussions on a message board about babies and diagnoses and termination and Down syndrome are swirling around in my head....words like "suffering" and "poor quality of life" just don't fit in with what we know here in Holland.

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There's so much here that they're missing, Lily. So much beauty and truth and life, and yet there are so many who will miss coming here because of fear and misconceptions.

I'm convinced that if they spent just one day in our windmill-graced country side and knew the joy we feel living here, those fears would be wiped away.


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Yesterday your brothers and sisters were all playing outside while you and I sat on the kitchen floor, discussing apples and learning signs. Your sweet little expressions and comical antics were as always, my morning staples. Ten children and twenty-three years of parenting have taught me that dishes and laundry can wait, when there are miracles happening right before my eyes.

And now tonight as I watch again these moments captured, I am wishing that everyone could spend just two minutes in Holland...



*disclaimer: my floors are clean. promise.


I'm prone to introspection, Lily- it's part of who I am. I usually mull over things said or written that just don't sit right with me for several days, absorbing and processing and analyzing, until I can get my brain around a concept or idea. I want to be slow to judge and quick to forgive...

So it isn't in rash, thoughtless retaliation that I write these words. I do understand the fear and the uncertainty that can come with a diagnosis of Down syndrome.  After all, how many people holding that plane ticket to Holland in their hands would rejoice or eagerly anticipate the journey, without ever having walked these tulip-studded paths.

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But really when I look back at all my fears from pre-Lily days and analyze them one by one...the "quality of life" I was measuring was not yours but mine. How could I handle a child with special needs...how could I care for a baby with extra needs or medical issues...what will my life be like years down the line when you still require care...

Because when you boil it all down, when rationalizations and motives are sifted and sorted through, what it all comes down to is you are not suffering. Your life is a gift, and I have no right to throw that gift away because of perceived inconveniences or challenges that extra chromosome may or may not present.

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And just as with all my children, this journey called parenting has no guarantees. Even if I carefully booked my ticket to Italy or Greece or France, diligently making sure that I arrived safely at my destination....life has its way of changing our travel plans. When it comes to the weightier matters of life and death, I am just as guilty of "passing judgment" if I put myself in the position of determining of who is worthy of it....and who is not.

And isn't that just like any decision we're faced with in life? Do we trust the travel agent, or do we make our own plans? Do we choose to view people through our own perception of what is "normal" or "typical"- or do we embrace all life, including its most fragile form?

 I choose you, Lily. I choose life.

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So hold your head up high, and never be ashamed of who God made you to be.

You are beautiful, you are a gift, and you are worthy of life.



Loving you always,

Mama oxox

32 comments:

Team Lando said...

Lily hugging her apple just made my day.

Bulldogma said...

Patti - I'm a long-time follower of your blog, and fellow mommy of a genetically enhanced daughter. I need your help. I have a new book available for Kindle on Amazon. I'll be donating 10% of ALL profit directly to Reece's Rainbow. I need help spreading the word, as well as people to read the book and leave (hopefully) positive reviews for it. It's called "Disaster Flambé" by Leigh Schilling Edwards.
Can you help me spread the word?

Thank you SO much in advance!!

Copy & paste webpage link:
http://www.amazon.com/Disaster-Flamb%C3%A9-ebook/dp/B005FYGB86/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1312568115&sr=1-1

Hugs!

Megan said...

She's getting so big. I think I say that every time I comment to you. I love her loving her apple!

And I love her pants. Layla had some similar to that back when she was itty bitty.

And correction...your floors *were* clean lol Thanks for sharing! I love videos. Makes the kid in the pictures real :)

Katrina said...

Love reading your post. I,too, believe our concerns are really about us and not about the child with DS. I have had so many people comment about why I would choose to go to Holland when the children born to me were perfectly healthy and I was just going to burden them and my husband.

Yet I know that the joy I will experience from raising Carlene will be greater than anything I could have ever experienced in my other travels to Italy and France. All travels are different and wonderful in their own way.

Thank you for being so passionate and sharing your journey with others :)

Love,

Carlene's soon to be mommy.

Jill said...

oooooh she is so cute! I could gobble her right up

Melissa said...

That is just the sweetest video! I love seeing these. Lily is so adorable and I love watching her hug her apple. :)

amy said...

the words and thoughts are perfect...as if they were my very own.

and the photography beautiful and compelling, as always, and especially when you are shooting your most favorite subject. :)

Wren said...

I love watching videos of Lily, she's just too sweet! Sutter would be in heaven if I let him have an entire apple like that, lucky girl! :)

Anna Theurer said...

"analyze them one by one...the "quality of life" I was measuring was not yours but mine"--Patti, you hit the nail on the head there. Something tells me that is what many people are thinking of without even realizing it when they find out they are pregnant with a child with Ds or that they have a child with Ds.

Lily is darling as always. Such a big girl with that apple!

Mama Keene said...

Beautiful, just as your perfect Lily :)

Sarai said...

Patti- you have such a warm heart and spirit. I love reading your blog. It really brightens my day.

Becca said...

Oh, she is SO precious!! I love seeing her in action - she is an absolute heart-melter. Loved your disclaimer. I was thinking about how disgusting my floors are and how jealous I am...LOL

Beautiful post, as always. :-)

Shannon said...

It kills me, this selfish world we live in. When people terminate, its a selfish motivation... they don't want their life to be harder, even though this is often placed on the child that they don't want their childs life to be hard. Not one of my fears of having Fiona was for the quality of her life, it was the quality of mine. If there is one thing you can take away from anyone with Down syndrome is that they live life to the fullest, they don't dwell on what they can't do, but rather what they can. And they are always smiling- a smile that is contagious and bright. Her life is amazing, mine is a little more difficult, but without a doubt or hesitation, my life is better with my daughter who happens to have Down syndrome.

Ashley said...

Beautiful, Patti. Absolutely beautiful <3

Becky said...

You know when I read that poem about Holland at my daughter's birth, I liked the analogy. It comforted me. But, after four years, I have realized something else too. You do not necessarily have to go to Holland either. Each child is an individual with their own plane ticket to their own destination, and we, as parents, are just along for the ride. Even with our "typical" children we envision the destination and that is not always how it is meant to be. Holland is beautiful, and a place I do not mind traveling with my daughter. But, I think we might be headed for other places with both of my girls...I envision Australia or Hawaii or England. :) Who knows...wherever it may be is what was meant to be and I want to enjoy the journey no matter where it takes me and my family! Loved your post because I also believe Lily and my daughter Kristen and every child born with Down syndrome are gifts and so "worthy of life" as you so eloquently put it.

Heidi Ehle said...

Amen. Amen. Amen. Just like you, I think that we all do some sort of concern masking during our grieving process. We may think that our concerns are for what sort of life our children will have, but in all honesty, our biggest worries are for how we will react and handle a life that isn't what we planned. The hopes and dreams that we all had for our "perfect" babies haunts us. But once you hold that tiny beautiful baby in your arms for the very first time, you realise that not only were you wrong about every preconceived notion that you had, but that this baby IS MORE perfect than you could have ever imagined. I wish there was an adequate way to describe the feelings I get every single time I look into Lydia's face. I've been looking at her every day for 7 months and every single day it's brand spanking new to me. I feel exactly the wonder and awe that I did the very first time I looked into her face!

Kaiti said...

Lately our thoughts have been on the same wavelength. I am 33 weeks pregnant and have chosen to go to Holland. This was not where I intended to go but it is where I"m headed and where I'm going to have as much fun as possible! I haven't even met my little muffin yet and am already blessed to be her mommy!

babypelly said...

beautiful and so right!! :)

Rochelle said...

Oh you know we are loving life here under the sweet breeze of the windmills. Beautiful post as always. Lily is precious!

Jonana said...

I've read that story about Holland so many times, but this time I'm on my way to Holland. My flight didn't get mixed up, I picked Holland but even so, Holland isn't somewhere I ever thought I would be. So, while I'm excited about the trip, I'm so thankful for friendships I've made with people like you who have already been there and can help me navigate once I get there!

nicole said...

The picture of Lily with her "bulldog" face holding her apple may be my all-time favorite.

Love what you wrote and couldn't agree more!

Twilson9608 said...

This was absolutely beautiful and it made me tear up.Beautifully wrote and beautiful pictures of a beautiful girl!

Lori said...

I love lily's outfit and hair and how she hugs her apple - what a cutie pie!!

laurahlj said...

So well written - I couldn't agree more! And, of course, Lily is beautiful!

Ginger said...

Oh my, I think you're so right- when people say they are worried about the child's quality of life, they really mean their own and are just making it sound better by saying it's about the child. It isn't.
What lengths we go to and arguments we create to justify the selfish life we really want. How wrong we are. Selflessness is freedom!

Colleen said...

I keep coming back and contemplating whether or not to leave a comment and what that comment should say and I think I will leave it at this.
We were in our Feb 10' birth board on babycenter together and I couldn't fathom what you were going through but you were always in my prayers. Thursday we found out that we have a 1:32 chance that baby #4 has down syndrome and as nerve wracking as that is I also find myself feeling a calm about it all. Between you and our strong feelings toward Reeces Rainbow and having talked daily about adopting since your original cry for Olga in December. We feel a weird state of calm and acceptance that in many ways we feel indebted to you for. We have declined the amnio and will be monitered closely via ultrasound but I just wanted to tell you that this post came at the perfect time for us, even though we were never questioning whether we would enjoy Holland or not.

Regina said...

Apple snuggles are SO adorable! Your Lily and my sweetie definitely are not suffering and I would say they have an excellent quality of life.

cathy said...

Simply. BEAUTIFULLY. WRITTEN

xoxo
cathy

angie said...

Lily puts a smile on my face everyday- thank God for her! I know your blog changes people's hearts everyday, so keep doing what you are doing Patti. :)

The thing is, when you open your heart to having children, there are never any guarantees about how easy or heard the journey will be, no matter what the genetic tests say. We have two children that struggle (one with health issues, the other with reading social cues), and while it breaks our hearts at times to go through these things with them, we learn so much, and they are absolute treasures to us, just like our "healthy" kids. We just have to trust God that he, in his infinite wisdom, knows exactly what he is doing. Living in God's perfect will is the best thing any of us can do.

aweyers2 said...

I have been reading your blog for some time, but never comment. Lily is just so stinkin beautiful! I mean she is stunning! I could just stare at her all day- in a non creepy way haha!!

cathy said...

I just looked at the video---oh my goodness
precious beyond

xoxo
cathy

soha said...

like always you write fabulous and you can touch my feeling very easily.this word are always, day by day in my mind.