Monday, March 7, 2011


Dearest Lily,

It's late at night as usual, and I'm listening to you and daddy compete for who can snore the loudest while I write to you. I wonder what you're each dreaming about..


The past few weeks I've had the strangest thing happen- not just once but several times. It's usually when I've fallen asleep with you in the afternoon, and I'm in one of those deep REM sleeps- the kind where you wake up and can't even tell what day it is.


So what's been happening is while I'm sleeping and dreaming, I'm reliving your birth and the moments afterwards...and finding out that you have Down syndrome all over again. And what is crazy, is that it is so vivid to me- the hospital room, the lights, the sounds, the feelings- that in my dream I feel like I am completely back in time again.



And just like the day of your birth, I am so relieved to see you and know that you're alive and breathing and a girl and beautiful and mine ....


...and yet part of me is dying inside, afraid and shocked and feeling helpless and reeling. I'm watching everything unfold all around me, and I'm thinking, "Is this really happening? Does my baby girl really have Down syndrome, or am I going to wake up and find out it was all a dream?"



And in my dream I do something I never did the day you were born- I cry tears of grief and anguish and loss, and even though I'm sleeping, my throat physically aches from crying so hard. I'm not just crying for the moment I'm in- I'm weeping for lost dreams and for what the future holds, I'm crying for the baby I thought I was carrying but wasn't, and it feels like I'm mourning the death of a loved one.


So each day that this has happened, I start to wake up from the dream, and in that blurry place between dreams and reality, I am still crying...and fearful...and I start to feel panic set in. It feels like I'm drowning, and just as I'm about to slip all the way under those waves of grief.....


I wake up.

Completely wake up, and I look over at you and see your sweet and perfect face lying next to me and I realize-


Photobucket was just a dream!

You're here and you are my beautiful Lily, and I wouldn't have you any other way. Being your mama hasn't been scary, or sad, or burdensome, in fact it has been just the opposite. You arrived in life just who God made you to be, and your daddy and all your siblings and I are head-over-heels in love with you.


And Lily, I can't even tell you how relieved I have been, waking up from that dream and finding you.


There was a post on last year that got more responses than any post I've seen yet. It was on the Down Syndrome boards, and one mama posted a picture of her beautiful little girl and posted the phrase, "What I was worried about". She asked other mamas to post photos of their children with Ds, and to say what they had been worried about...

That post was FLOODED with responses- and every mom told the same story. Our children proved our worries and fears completely unjustified, just by being themselves.

Does that extra chromosome carry with it extra medical concerns? Yes.

Do we as parents of children with Ds have to put forth extra effort in so many areas, whether that's therapy or advocacy or even something as simple as toughening our hides in a sometimes-cruel world? Absolutely.

But now that I'm wide awake, I'm realizing- so many of my worries were so unjustified...


...and I wouldn't go back to life without that extra chromosome if I could.

So happy to be yours,

Mama oxox

P.S. Thank you so much to ALL who voted for Lily in the Kid of the Year weekly photo far it looks like she placed second, (unless they contact me and tell me otherwise!) Lily had over 3,265 Facebook "likes"...and since not everyone has FB, I know she had many more votes than that. We're so blessed by how many people voted for our girl..our good friends Joyce and Virginia even blogged for her! I know I say it a lot- but I am so very thankful for all of Lily's readers and friends. We love you!
And if Parents calls me in January 2012 to say Lily's been chosen as the Kid of will just prove what we all knew anyway...she's number one !!!! ;)

Which reminds me- Lily's blog is still #1 in the special needs blogs here, where she was the featured blog this morning!

Top Mommy Blogs - Mom Blog Directory

If you like her blog, just click on the banner above...your click is your vote:)

Oh and ONE more thing- today is my daughter Mackenzie's 19th birthday...she has a beautiful blog about Lily HERE and a fun personal one HERE. Go wish her a happy birthday and tell her how amazing her photography is- you'll make her day:)


Race Bannon said...

I once had a dream that a hamburger was eating me...(Seinfeld)

Second place, is the first loser...(US Navy SEALs)

Wow, you're quite the nimrod...(Brian Regan)

Mrs. K said...

WOW how did Lils get those teeth marks in her apple? Love you Lils and you constant sweet smile. Grammi

Janie Fox said...

I so loved this post. You are blessed and Lily is too!

cathy said...

eloquent, simply beautiful & honest
Patti, the pictures of Lily are amazing


Ilisa Ailts said...

Loved the pics of her climbing around. Love this post. It is scary at times, then with another day or more or less, the fear is gone. We realize it really is okay. Life is exactly as it was meant to be.

Anonymous said...

She is perfect and even more special with that extra special chromosome! I keep thinking the pictures cannot get any cuter. And they just keep melting me daily. These are priceless.

I am like you- I cannot picture Benji any other way. I am thankful for his extra special chromosome that makes him amazing. If you ask Anna Rose (my five year old) what it means to have down syndrome, she will tell you, "It is something that makes you really, really cute." We love it. I have a friend now that is praying for a baby with down syndrome. She just knows how extra special that extra chromosome makes a child with down syndrome. She does realize the health concerns that can come up, but she is trusting in God in all things. In a country where nine out of ten babies are aborted with down syndrome, this blesses my heart. So sad that people would murder their baby, their child, because they think they are less than perfect for our society.

And I just know Lily is truly the winner of that contest!! Love to you, Cara

Callie said...

Your post comes from a place of such complete raw emotion, it was lovely. It has been interested "reading" your journey of healing and acceptance go full circle right back to just loving your child for exactly who they are and not what we want them to be.

patsy said...

beautiful, beautiful post patti :) and pics, too cute !

patsy said...

beautiful, beautiful post patti :) and pics, too cute !

nicole said...

Lily is always adorable ~ especially in her Lilybird shirt!

jane@flightplatformliving said...

i love your blog so much it gets me every time! you have such a wonderful way with words, its inspiring. your older daughters blog has just reduced me to sobs! i think your family are an inspiration, lily was well placed. jane xx

Rebecca said...

Your post brought so many tears to my eyes..I am still in tears now! :) Just beautiful! <3

Unknown said...

Love, love, love it. Thanks, Patti.

Unknown said...

Love the post...and the pics are absolutely adorable!

Lori said...

Ohhh - Lily looks so so so pretty - give her a big kiss from her Auntie!!