Thursday, July 28, 2011

what I wish they knew

Dearest Lily,

We just finished our morning ritual of breakfast, play time and bath, and now you are curled up in your pink hooded towel, fast asleep in the overstuffed chair beside me. As I was getting ready to write this post, I clicked on the feedjit tab on your sidebar, opening it up to see who was coming to visit you today. One of the referring sites was as usual, babycenter...but instead of the post being one from our usual group, the Down syndrome boards, it was from another group.




And Lily, I choked back tears at the words that led someone here today.



Without going into too many details- there is a little life that's hanging in the balance because of the possibility of Down syndrome. You see, not everyone understands the beauty of that extra copy of the 21st chromosome. For some, the fear and uncertainty of what that means is almost too much to bear, and they have have no way of knowing what I know....




...that a baby born with Down syndrome is not a burden and not a nightmare to be avoided- that in fact they might be about to throw away the greatest gift anyone could receive in life.

And it wasn't the first time that this has happened- someone finding their way here because of a quad marker screening or amniocentesis. The truth is that just about every day there are mamas who are receiving a diagnosis or potential diagnosis of Down syndrome for their babies, who come here looking for answers. One little gadget installed on my sidebar has given me a glimpse into a world of hurt and dispair that is out there- people coming by googling their fears..."chance of Down syndrome - help" or "sick with worry" or considering abortion".




I pray with all my heart that they will see your sweet little face staring back at them and choose life. I pray that reading our story makes a lasting impact on mamas facing those lifetime decisions, and that they somehow find an anchor to hold onto.



I wish so much that they could hold you for one minute, sweet Lily. Just one minute looking into your star studded almond eyes, or holding your tiny hand with the little bent pinky... and they would know.



They would know what I know, knew instinctively from that first moment I held you in my arms on that fate-filled and faith-fueled day so many months ago. That you were indeed fearfully and wonderfully made,  and that no amnio or quad marker could have foretold the love I feel for you.

Nothing could have prepared me for that overwhelming sense of gratitude and awe for being entrusted with such a gift. And even now I wonder if there will come a day when doctors and medical professionals arm their patients with pamphlets and websites and information that show a truer picture of what life with Down syndrome means.



Because it means this...




and this....



and this...




It means a journey just like any other journey of parenting- forever having your heart go walking around outside your body. It means experiencing a greater sense of purpose because of the life that has been entrusted to your care.



It means wondering how you could have ever doubted your capacity for love, and wishing you could somehow go tell every fearful and anxious mama: It's going to be so good.




Holding you closer today,

Mama oxox

28 comments:

Team Lando said...

Reading this, I'm holding Ellie closer today, too.

Dana said...

This is so sad! CHOOSE LIFE!!!! I pray that someday mothers will realize that ALL children are a blessing!!!!! www.allchildrenareablessing.blogspot.com

Heidi Ehle said...

I sit here in the hospital, with tears streaming down my face. Because, you know, despite every heartache and watching my tough little angel go through Hell over the last two weeks, I would never ever trade a single solitary second. I might wish a thousand times that she did not have to go through this, but I know in my heart, had we not faced this it quite possibly could have been something else much worse. We are truly blessed. All of us in the "extra chromosome" club. And I pray every single day that my blog does what your does...reaches out and tugs the heart strings of a mama somewhere who is scared, worried, and confused and shows her that THIS IS TRUE BEAUTY! This is true love. This is true joy. A blessing so much greater than any of us deserve. :)
Much love to you, Lily and the rest of your beautiful family!
XOXOXO, Heidi
PS I still haven't received the bracelet I won for Liddy. Not that I am in a hurry for it (since it will be a while before she is big enough to wear it!). Just checking with you! KISSES!

Patti said...

Oh Heidi- I am praying for Liddy! Did you contact the etsy seller? I will send her an email and remind her!

Kimberly said...

I completely agree. I always feel that if anyone met my precious, perfect bear cub that they couldn't even consider abortion.

Becky said...

I could not agree with you more. I hope this post finds it way to those parents who need to see how wonderful life really and truly is...I will pray for that. Thanks for once again putting into words what so many need to hear and see. You do touch so many lives, and I thank God that.

Leah said...

Thank you for putting what so many of us who have the honor and the joy of loving our children with Ds. Beautiful and oh so true. What I wish that everyone knew this truth!

blessingsandglory said...

Don't you just wish a prenatal diagnosis came with a baby instead of a cold geneticist spitting out *facts?* It's life in a vacuum. How is a mother even supposed to think clearly when she is only given harsh statistics about what *might be* instead of holding her own beautiful flesh and blood, her sweet baby, who yes might have an extra chromosome.

The part that really gets me is that we live in the sort of world where we ask a mother to make such a *choice* about her own child. I'm pretty sure that's not what HE had in mind for us.

Thank you Patti for sharing Lily's life and for being such a light in the darkness.

Amy, a redeemed sheep said...

Amen and amen. I do not have a blessing with Down syndrome, but I have been richly blessed by others who were given the gift of such beautiful children. I am going to pray for the little one and for the momma who is so scared....

Rochelle said...

Oh I hope this and all our blogs shine the beautiful light on the world that includes a little something extra! It is a beautiful world and so many beautiful friends we have made along the way!

Kaiti said...

As a soon-to-be momma of a baby girl with Down syndrome and a heart defect I know what the "searcher" is going through but I pushed through the hard time and realized that this baby girl is already amazing and she will be even more amazing when she is born! Thanks for the post it's exactly what I've been trying to get friends and family to realize.

laurahlj said...

I was thinking about these little babies today and was praying for them to have the chance to live! Ben is my joy. The love I feel for him is so strong. He is not and never will be a burden (although I thought he might be before he was born). I'll be praying for this mommy, praying that she chooses to be part of our lucky club!

cathy said...

Oh my goodness....I pray she heard you

xoxo
cathy

Andrea said...

Beautiful post. I love the photo of all the kids. I hope the women can move beyond the fear and see the beauty. I know your words reach out and touch the hearts of many people. Lily is beautiful and she too touches so many people.

Susanna said...

What beautiful pictures of a beautiful girl!

Ginger said...

Last week I had a sonogram, and after I asked "How's the heart?", the doc suddenly went into a hunt for Down Syndrome markers. "Well this is fine, so that's not a marker for Ds; this looks good so that's not Ds; this is not too thick, so that's good- not Ds. . .". Ugh, it just made me so sad!
I didn't say: Make sure my baby doesn't have Ds; I said how's baby's heart!
She just assumed.
Big, wrong assumption.
I was frustrated and didn't say anything. But I got back in 2 weeks for a follow-up sono (baby was facing down most of the time, so they couldn't see everything they wanted to see). I'm not going to miss this opportunity to tell her how powerful her choice of words was (it was either Ds or it was fine and great). If you have any words you'd like me to share; please do tell.

On another note, I absolutely love the pic of the siblings surrounding & worshiping Lily. So adorable!

Ginger said...

ETA: that should say: "I go back in 2 weeks. . ."

Ashley said...

Oh, Patti, that breaks my heart. I pray so hard that she chooses life for her sweet baby. When we found out Laura had Ds, abortion wasn't even an option, so I can't imagine even how this mother must be feeling.

Whoever you are, if you are reading this: PLEASE choose life for your baby! You will be blessed beyond words. You will be more blessed than you ever thought possible. Whether he/she has an extra chromosome or not, he/she was made in God's image, and is just as human as you and me. If you are worried about whether it is going to be hard to raise him/her or not, raising NO child is exactly easy. I have a little sister with Ds. She has blessed my life more than any of my other siblings because she has shown me soooo much about life. I could never imagine my life without her, and I wouldn't have her any other way. If you give your baby a chance, he/she will show you the same thing. We love Laura and her extra chromosome SO much that we are adopting a little girl from Eastern Europe who has Down syndrome too! Please, please give your baby a chance. You will not regret it <3 Sending prayers your way, new mama.

Lauren said...

The thing that I always notice about those who choose life vs. those that make the other choice is that those who choose life have so much joy in their words. Through all the struggles and worry, there is joy.

You just don't see that in the other group. It is a path filled with so much sorrow and regret.

Choose joy! Choose life.

Mama Keene said...

The other day my Husband and I were talking about what if one of our children would have been born with ds or if this baby on the way was to be. It wouldn't change our love, as my Husband said, it's still our baby, our child. After reading and following your blog, you have shined a beautiful light on how wonderful that extra chromosome is. Maybe it's all of us without it, that are truly missing out, not seeing the world as beautiful as we should see it. Squeeze your sweet Lily for me! I love love all the pictures of her!

Lori said...

love your new header and Lily's hair is beautiful....praying people find your blog for hope!!

Smilen Champ said...

Hi
My name is Jenna and I came across your site. I love all kids, teens and adults who have downsyndrome. Maybe it's because I have many friends who have downsyndrome, It could be because I have developmental delays myself. I am a big supporter of downsyndome, I go to the buddy walk every year, and any actitivities that the ups and down society has. Your daughter is so beautiful and I love her smile. She is an inspirational hero. I was born with a rare life threatening disease and I love it when people sign my guestbook. www.miraclechamp.webs.com

Jane@flightplatformliving said...

oh yes you said it so well patti! smith magenis syndrome is utterly horrific to read about but my tilly is the joy of my life! xxx

angie said...

Praying that the mother who found Lily chooses life. Thank God for blogs like this and that she found Lily's precious face in her search for answers. Love Lily's little ponytail BTW. :)

Laura said...

Hi Patti,
This was such an amazing post. I truly hope that Mom comes back and reads it. If only she knew.....

It reminds me alot of a post I did last year, trying to reach out to anyone new who was struggling with this "diagnosis" that life is GOOD and so NOT scary! :)

http://nowimamom.blogspot.com/2010/04/fun-in-sunwith-reflection.html

Many hugs,
Laura & Ryan

By the way, your Lily is simply beautiful! :)

Christine said...

Beautifully put. You just spoke what is on my heart... yes, if they only knew...

Aurora Flores said...

Lily is beautiful & perfect. You're blessed to have her, and her to have you.
Thank you for sharing your heart.

Mrs. K said...

Every once in a while I revisit an old blog. I can never decide which is my favorite, maybe because they are ALL MY FAVORITE. Love what you have to say and love, love all those precious pictures. Brings me closer to my babies. Thank you for blogging...miss the music though.
Love and oxoxoxox, Mom/grammi