Sunday, June 12, 2011

beyond measure

Dearest Lily,

It's late at night and Daddy is in bed falling asleep with you on his chest, while I type.

"Lily's getting big, Mommy," he says to me in a sleepy voice, his eyes closed and yours as well.

"Mmmm hmmm," I answer...because I'm only half listening, while I upload adorable pictures of you playing with Abigail's barbies..



"She used to just be a little ball curled up on me, hardly weighing anything...and now look at her- she's grown so much she takes up my whole chest."

"Yup," I agree...


"Has it really already been more than a year?" asks Daddy. "It's so hard to believe it's been that long."


"Seventeen months," I answer, smiling at the photos of you trying watermelon for the first time.



"A year ago that we were dealing with the feeding tube nightmare... and all that we went through at the hospital," Daddy murmurs, his voice getting groggier.

I know it hurts Daddy to think back on that time. We'd been in the NICU with you for almost a week and I never saw him cry, not even when they told us your karyotype came back positive for Down syndrome.


You weren't gaining enough weight after 5 days of staying in the NICU, and the doctors wanted you to have a feeding tube put in if we were going to be able to bring you home. The hard part was that one of us would have to be able to remove the feeding tube and reinsert it, to demonstrate that we were up for the task of taking care of you ourselves.

Daddy volunteered- reluctantly- because he knew Mama is not very good at things like that. I knew he didn't want to do it, but we were willing to walk through fire at that point if it meant bringing you home.


Poor daddy- after several failed attempts to get the feeding tube in, you were crying so hard and bleeding, that the sympathetic nurse took over. That was the only time I saw your daddy cry- he hated to see you hurting. Even the nurse had to ask for help from someone in getting that tube down your tiny nasal passages, and she waited til we went to lunch to do it. I don't think she liked seeing daddy so upset either. In the end they decided to let us go home anyway, and we ended up taking that silly tube out after just one day.

And now here we are 17 months later, and as I'm listening to the sleepy sighs of a Lilybird and her biggest fan, it hit me: that incident is a perfect picture of your daddy's love for you.

Because the only thing he's ever regretted about you having Down syndrome is any struggle it might mean for you. He never grieved any perceived loss or wasted time worrying about what the future might hold. He always had faith that whoever God gave us was exactly the daughter He intended us to have.


It's very late now, and you and daddy are sound asleep, your tiny body melded into his and your breathing synchronized to sound as one. So I'll say goodnight and join you, but before I do I just wanted to tell you: you have the best daddy on the planet, and his love for his children is beyond measure. It doesn't matter who you are or what you do in life- you'll always be Daddy's little girl.


But I think you already know that:)

Sweet dreams,

Mama oxox


Angel said...

So sweet! Love this post. Looks like Lily was blessed with a wonderful Dad. :)

Unknown said...

Beautiful in every single way.
Sending you love on this Monday afternoon.

Unknown said...

Beautiful in every single way.
Sending you love on this Monday afternoon.

nicole said...

Your children are so blessed to have such a loving reflection of our Heavenly Father in their Daddy.

Did you dress Lily for the occasion of having her first watermelon? Looks like the perfect outfit!

cathy said...

PRECIOUS Patti, simply precious


everything is as it should be

Patti said...

Nicole- I didn't but that's exactly what my husband said! :)

amy jupin said...

oh my dear patti,
how i can relate to each and every word, i feel each one as if it were my own...these wonderful men we've been blessed with! i know i say this on every comment i leave, but this might just be my most favorite post ever! :)

love and hugs to you and miss lilybird!

gretchen said...

This made me smile VERY big!!

Naomi said...

Makes my heart hurt to think of him crying. Reminds me of Jas. Anytime he cries I completely have a meltdown. I CANNOT take it to see him cry or pretty much any man cry. My heart literally starts to ache.

aly win said...

Sam has always seemed so loving .... so gentle. I remember back when i was in kindergarten and during the summer all of us kids would be playing out side and I got a sliver that hurt sooo bad and sure enough Sam came to the rescue. Also one night that i spent the night and an odyssey scared me and he came in there and prayed a passionate prayer ... just fro me being scared... Lilly you are so very lucky to have a daddy like him!

Education: Exploring Online Learning said...

So precious! She IS so big, and such a doll.

Unknown said...

Precious. Just precious. I'm crying.

Ilisa Ailts said...

I love this post - even with the struggles, because it all means so much more with those.

Stephanie said...

This before Fathers Day! How can you top it! Beautiful!

cara said...

She DOES look perfect for her first watermelon!

Beautiful Patti- you all are SO blessed to have Lily and she is SO blessed to have you.

Danielle said...

love this post! the second to the last pix is DARLING. one of my favorites of her!

Danielle said...

oooo just read Ali's comment. so sweet! (: