Thursday, May 5, 2011

forgetting down syndrome

Three Little Angels Giveaway still open!!


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Dearest Lily,

Last year I read on another mom's blog that sometimes she almost forgets her son has Down syndrome. And honestly, Lily? I thought she was lying. Well, maybe not lying on purpose...I just didn't think she was being totally honest with her feelings, or maybe she was putting a little sugar coated spin on life so people reading would think Down syndrome wasn't really such a big deal.


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And it's not that it is such a big deal for you right now. I mean- you're just a happy baby, exploring the world around you and discovering new things every day.

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It's true that you aren't standing alone or walking yet...actually, you're not even crawling yet. You army crawl everywhere, but you have yet to get up on all fours and crawl.

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There are some definite "lags" in your development right now, for sure. But for the most part I just spend each day amazed at all the things you can do, and I'm so busy being proud of those accomplishments that I truly do sometimes...forget...that you have Down syndrome.

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I remember just 6 months ago watching how you handled things- delicately and a little mechanically and deliberately, as if you were thinking, "now fingers: grasp that toy" while you reached for an object. I remember watching a video of another baby reaching for and grabbing a doll and rocking it back and forth- smooth, fluid movements that came so naturally- and it hurt to think you were so different. The words of that other mommy, stating carelessly that sometimes she just forgets her son had Down syndrome, seemed to mock my daily- hourly- obsession with what your diagnosis might mean for your future.

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And it wasn't that those hours were filled with grief or mourning or hurt, Lily. I don't want anyone looking back at those days to think you were anything other than truly celebrated- because you were and are our most celebrated gift.

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I think it's just that as mommies we are naturally protective and defensive of our children. We don't want anyone to question the beauty or worth of our babies. And let's face it- in an age when the abortion rate for babies receiving a prenatal diagnosis of Down syndrome is at 93%...it is natural to feel a certain level of defensiveness.

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I distinctly remember the quietness of the room and the look on the doctor's face when I was pregnant with your brother Jackson 5 years ago at the ripe old age of 38. She calmly and professionally slid a piece of paper across the table towards me, and with a grave look on her face quoted my odds of giving birth to a baby with Down syndrome at my "advanced maternal age." I stared blankly at the numbers, as she drew a red circle around the statistics that coincided with my age...and I silently wondered how many mamas weighed their baby's lives in the balance based on that slip of paper.

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And here we are now Lily, years later, you and I...

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We've made our own little contribution to those statistics, and I sometimes think about going back to that doctor's office and proudly showing her you. I want to tell her that although others may try to draw distinctive lines in the sand as far as who is worthy of life and who is not...

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...sometimes I truly do forget you have Down syndrome. And it's not because there aren't challenges you face or that you don't have to work a little harder at things. It's because loving you is as easy as breathing, and that horrible, scary thing that women are tested for during pregnancy?.... it's not all it's cracked up to be.

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When I think of the blessing I might have missed out on, the every day joy that you bring, had I heeded the implied warning in those grim numbers...

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...it makes me want to tell the world about the treasure that you are.


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And the beauty, the blessing, the incredible sense of purpose that has accompanied your magical extra chromosome in life? Well, it has me wanting to shout it from the rooftops....


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I am not afraid. I was born to do this.


Love always,

Mama oxox

31 comments:

G-Zell said...

Your daughter is gorgeous!

Erin B said...

Patti ~ I absolutely love your phrase "its because loving you is as easy as breathing". LOVE IT! That is such a perfect phrase for all of us mommy's on this wonderful Mother's Day weekend! Thank you for a beautiful post :)

Deanna said...

I love Lily...and this post is breathtakingly beautiful. You are so right. It's so comforting that we're going through this journey together. I so wish that our little girls could meet!
by the by, I posted the requested belly pic and never got a comment from you...does that mean you're holding back the opinion that I'm outrageously fat???

Ginger said...

Oh my goodness, what beautiful pics! And a clip in her hair even! ha
Is she doing a duck call in that one outdoor pic? LOL
I just love, love, love her itty bitty ears. They are so precious. Two of my adoptees have ears the size of quarters. I just love them. One of them, my buff son, was made fun of once. A kid said he probably couldn't hear too well w/ those tiny ears. I did what I swore I'd never do. I told him that everyone wants little ears and a little nose and that boy was jealous.
I couldn't help myself. :D

Anonymous said...

Oh Patti- you keep me in tears!! Lily is just perfect and beautiful and exactly where she is suppose to be. She is an extra special gift from our King, and He is using her to bless SO many people. And He will continue to use her and bless people continually. You are the most amazing mommy to her. Your love for her just flows out of you. And you always convey your message perfectly. And I always relate with exactly what you are saying.

I remember right after I had Benji, I went to a meeting with Norm Wakefield speaking. His daughter that is an adult now has down syndrome. My beloved girlfriend drug me right up front to him and told him about Benji. I wanted to, but she knows me. I am not one to approach a speaker. She has no problem with that, and that is one thing I adore about her. But I knew that the Lord had something for me that night from him specific. He showed me an email on his phone from a friend he had just received that day about his daughter, Amanda, with down syndrome. He told me that the Lord had it just for me. It was the most beautiful email that his friend had sent him. I cannot remember all the words now, but he was telling him that he had a dream about Amanda, and it was this amazing dream about her relationship with the Lord. Norm told me that Amanda had the most beautiful, and the most pure relationship with the Lord he had ever seen. It blessed my heart SO much. He also told me to just enjoy Benji- he is a child that will not have all the cares of this world, and to enjoy him.(he meant that in a good way) He went on and on about the gift she is. Oh, my heart was so full of thankfulness that night.

The world has so many standards, but we are all truly here to do God's Work wherever He calls us and to accomplish His work. Sadly, the world is perishing. All that matters is that we believe on Him and serve Him with our whole heart where He has called us. You are inspiring SO many others by your blog!! God has good plans for Lily and Benji- a future and a hope in Him. I am SO thankful for this extra chromosome in a way that I know you personally understand.

I think you should take Lily back to that doctor and show her Lily and the gift she is to so many. I am sure she would love to see her. We delivered Benji at home with a midwife. But I did end up taking pictures of him to my OB and telling her all about the gift he is to our family. I think it blessed her. I really think she was blessed by his smile and seeing all the love we have for him and how thankful we are. She never did what your OB did. But I remember a nurse there telling me that we could discuss my options after the test for down syndrome when I was pregnant with Mary if it came back positive. That broke me. Doctors really need to have a different outlook on this so they can encourage parents to keep these precious blessings. Breaks my heart that anyone would abort their baby God gave them. But many have bought the lie of the enemy. I am SO thankful that my eyes are open.



Much love to you, Cara

Jenny said...

Beautiful Patti, just beautiful...And these pictures are my new favorites of Lily, they are so adorable :)

Nic said...

Patti, this is one of the most moving post's I've ever read.

The way you love your girl is amazing, although that's no surprise. She looks pretty easy to love.

The strength you convey is awe inspiring and I wish you nothing but happiness :)

Rachel said...

So beautifully written...and loving them is as easy as breathing...it is for all kiddos...

Mrs. K said...

Patti, LOVED, LOVED, LOVED ALL THE PICTURES OF MY PRECIOUS LILY ANNE. With the exception of the last one.....it didn't come through. Doesn't seem like anyone else had a problem. Why me? Why Grammi?

I am looking at my word verification and it is "fooduck." Maybe Lily was doing a duck call in one of those pictures on the porch.

Just finished reading "The Memory Keeper's Daughter" and I didn't like it. It was very sad, full of secrets and regrets. It kind of ends happy but it shows how people sometimes hold in their feelings and how it hurts others. Your blog show all of us the "naked" truth of your feelings and we can all relate. You are surely blessing us all with you honesty and trust.

Love you Sweety, I am so proud of you.

Mrs. K said...

OK. I left your blog and came back and there was the last picture. YYIIPPEE!!!

amy said...

you were born to do this.
indeed. :)

and those pics of lily are just about the sweetest things i've ever seen.

Rochelle said...

I totally think you should show her off to that doctor! She is an amazing and perfect gift from God. Thankful that you realize that, can't wait for the rest of the world to catch on, keep advocating!=)
Love you friend,

Mrs. Mama said...

Beautiful Post. Although I was not at high risk, I do recall my doctor asking my husband and I if we would like to get tested to see if our baby had Downs.. and without hesitation, I said to her "No. Why would it matter?"

She even mentioned, "well we like to get it tested early enough just in case." I was 18 weeks along. Just in case what?.... I had already fallen in love with my baby. Felt her move. No diagnosis could take her away from her.

Thank you for reminding us how special and beautiful a life can be. Your daughter is amazing.

Heidi Ehle said...

Oh Patti! :) First of all, I just gotta say thank Heavens there is someone else out there who takes as many (well maybe not QUITE as many lol) pictures of her beautiful baby as I do! ;) I just can't seem to help myself. (my husband says I am obsessed with our baby lol) I think my motivation for that is the same as yours...I just want everyone else to see how beautiful and amazing my little precious gift really is! Second, your posts always speak right to my heart.... Thanks for always speaking the truth so beautifully! Much love to you and that beautiful Lily!

Jenna said...

Hi Lily and her mommy,
My name is Jenna and I came across your site. U are a special wonderful caring mom, who was given a precious and special gift. God knew you had paitence so that is why he picked you as her mom and Lily as your daughter. I know that everything she accomplish you will be so proud of her. Just like my mom and dad are proud of me, because it takes me longer to learn than most. I have many developemental delays, physical disabilities and health challenges.
www.miraclechamp.webs.com

nicole said...

I spy some chubbiness on Miss Lilybird ~ love it! Your beautiful heart writes such beautiful words.

cathy said...

Oh Patti..beautiful

xoxocathy

iseeyoulookingatme said...

She is such a treasure! I enjoy your blog, but I most especially love looking at those beautiful pictures of sweet Lily!

Are the statistics really that high for aborting downs babies? I refuse all extraneous testing for that very reason. There's nothing we can do about it....but wait.

I understand how you could forget!

Race Bannon said...

I did the math, you are 5 years older than 38...

...I would have laughed, grabbed the pencil out of the doctor's hand, and drawn an ugly picture of a mean face, with an arrow pointing away, then lined it up to face the doctor. Then I would not have said anything, and see how she responded to that, because clearly it sounds like she was an awkward wierdo. But that's just me...

Patti said...

OMG Race you are so stinking funny. Are you related to me or something??? Come visit me, we'll go back to that doctor together and you can draw on her notepad while I hold Lils:)

My Little Wonders said...

What a beautiful post Patti! You put into words what I have trouble articulating ...

jesshaydel said...

This post was beautiful. My daughter wasn't diagnose with williams syndrome until this year. At three years of age. While I knew something was wrong but we couldn't get the answers we needed so we lived, life like out should be ok. We still know everything is ok just a new ok a new adjudtment but they're are days when its just us our we are some where. And it don't cross my mind I'm not thinking. About it. I live your writing and pictures, beautiful.

Laura said...

I love this post! I completely agree.
Four years into this, I forget too...often! In fact, I would say it like this: Sometimes, I remember.
It is so not an issue. Our Mylie is just who she is and it definitely doesn't define her! Rather she defines the gift of Down Syndrome.

Julie said...

Where is the 'LIKE' button for Race's comment? LTMSQ(laughing to myself quietly)...only so I dont wake my husband.

Janie Fox said...

shout it indeed. I love your words! xoxo Happy Mother's Day!!

Leah and Nick said...

What perfect words to describe how you feel, how I feel, how all of us in love with our perfect babies with extra chromosomes feel. Such a beautiful tribute to Lily and to all our amazing kids. I can't stop crying. Thank you so much for your posts.

Jane@flightplatformliving said...

keep shouting it patti, we love it when you do! she is so beautiful and your love is so amazing... you could both truly change the world. I often think about why the world has such a need to cling to 'normal' and to fear the extra chromosomes, the deleted chromosomes the rearranged chromosomes? Where did the stronghold of normal become so set that dread accompanied anything else? our normal now is not the worlds normal but it is still ours and i rejoice in that along with you. xxxxx

Ilisa Ailts said...

I forget too sometimes and am mostly so proud, like you :)

Katy said...

Patti, one of these days you're really going to have to stop making me cry. ;-)

Monica said...

Beautiful post, Patti! I know I've said those words many times... I *do* forget my guy has Ds sometimes. And, yes, cuz I don't think it's all that bad. Oh some days I get worked up because his behavior drives me crazy or because we have a hard time communicating, but those moments aren't the most important. I try to be real about Ds and not try to sugar coat it, but I guess John Michael continues to be such a blessing to all of us and those around him. So glad you posted this :-)

Sydney said...

Okay first of all... How is it even remotely possible that Lily is THAT CUTE? Most adorable, precious baby I've EVER seen!

Secondly, I don't have the honor of being a Mommy to a baby with Down Syndrome yet, but I feel that same way. I really do. Weeks ago, I was looking through all the cuties listed who needed 5/5/5 Warriors on Reece's Rainbow, and I totally fell in love with a certain little girl. I became her 5/5/5 Warrior and even published a post about her. It wasn't until I read over the post later that I realized, "Oh. She has Down Syndrome." I mean, it' didn't even dawn on me before. She was just a beautiful little girl as worth of life as anyone else. I wish EVERYONE could forget. It's amazing.