Monday, September 26, 2011


Dearest Lily,

Saturday evening
We're home now...three days out of town at a Bible conference has me roughly 8 loads of laundry behind. Tonight I will attempt to catch up, and tomorrow in between morning and evening church services I'll pack us all up again for a week at the coast.


Daddy is putting some tile in the beach house we stay at~ the owners are friends of ours who have graciously been letting us stay there for almost 15 years. Anne, whom you are named for, has a special knack for making people feel they are doing her a favor by visiting her guest home. We've spent so many vacations there it actually feels like our second home, and your brothers and sisters for years thought the name of the house was Depoe Bay, instead of the town it's nestled in.

You were lying contentedly in my arms when I began this letter to you, warm and sleep-heavy with a thumb in your mouth and your other hand slipped under the neckline of my shirt...your favorite way to fall asleep. I carefully transferred you to the couch, where you're now snoozing happily, tiny sucking noises competing with the clicking of the keys as I type...


Sunday evening
I started the above letter to you last night, but life and kids and packing took over and now I’m typing from Daddy’s laptop in the van as we drive to the coast. You’re sound asleep in your carseat , hopefully for the duration of the hour drive. I just hugged your brother Josiah goodbye, and then your sister Mackenzie, who moved out a week ago. This is our first trip to the coast without them, and I’m really sad about that. Both of them have to work, and they each took time off last week for different reasons, or they would have taken off at least a day or two to go with us. Jason and Naomi are at the hospital with their foster baby, who was admitted today for possible pneumonia and breathing problems. This is the second time this week he’s been admitted, and if Daddy didn’t have work at the coast, I would have just canceled this trip altogether. We left town twenty minutes ago, and at least five times I’ve debated asking Daddy to just turn us around and go back home.


I’m such a big baby at times, Lily. I know our job as parents is to raise our children to leave us some day, but honestly? I don't like it. It hurts and I don’t care if I sound like a wimp- I just want all of my babies under one roof.

When I get really really down about it, your daddy encourages me by telling me that in Heaven we’ll all be living together in one big mansion:) He talked about that in his sermon the other night- about how Jesus said, “In my Father’s house there are many mansions; if it were not so, I would have told you.” He said that in those days, when Jesus spoke those words, it was customary for a groom to bring his new bride home to live in his parent’s home after their wedding. The family would often build another room or rooms for the newlyweds, where they would have privacy and yet still be a part of the family. So when Jesus was speaking about the mansions of Heaven, the context of his words was that we, as the church, are the bride of Christ. And when He talked about going to Heaven to prepare a place for us and said, “In my Father’s house there are many mansions”, people in that culture would have known exactly what he meant.

So as crazy as it may sound, Lily- I look forward to that day when we are all together in Heaven, “under one roof”…all of my babies, and I don’t have to say goodbye to any of them ever again.


Which leads me to something I’ve been thinking a lot about lately. When you were first born, your daddy preached a sermon about the analogy called Welcome to Holland.  He talked about how God sometimes brings us to places we never thought we’d go…and He brings beauty and grace in the midst of it all. There wasn’t a dry eye in our church that day, sweet Lily- your first church service, and the first sermon Daddy preached since your birth. He talked about what a blessing you are, and how although we never would have chosen this new journey for ourselves, God was going to do a wonderful thing through your life. He said that even though we were only a week into that journey, already our family had grown closer and stronger through what some would perceive as a test of our faith.

He spoke words that I still remember, ones that I think about often.

“In Heaven, Lily will be whole.”


I remember his voice breaking as he said it, and he looked down at his notes and swallowed several times, just as he always does when he doesn’t want to talk through tears. I’ve never seen him cry about your diagnosis since that day. I’ve said it before, but your daddy is the eternal optimist. Life’s too short to spend worrying about things you can’t change, he says, and if there’s a silver lining to be found, you can bet your daddy will find it.

So I wonder Lily- who will you be in Heaven?  Because I truly believe with all my heart that you are my perfect Lily. I love you so much it hurts, and I’ve told you many times in my letters to you- the only reason I would wish that extra chromosome away is so that you wouldn’t struggle in life.  It’s not for me that I would change you if I could, but for you.

And I don’t want anyone reading these letters to ever think you are anything less than a perfect gift: a blessing and not a burden. 


But the truth is, you will struggle somewhat in life, to do what others your age are doing. You will have to work extra hard at doing things your peers take for granted. You might not talk as well as children or adults your age, and you might not be able to “keep up” in many areas of life. And as much as I do believe that we need to expect, not accept, I am also not going to pretend that there aren’t additional challenges that accompany a diagnosis of Down syndrome.


And yet…if I were to honestly think about the adults and children with Down syndrome that I’ve met in life, I have to wonder if maybe they aren’t closer to Heaven and its grace and perfection than “typical” adults and children I know. I don’t buy into the theory that our kids with Ds are angels- really, Lily, that whole idea sort of makes me cringe. And on top of that, your recent temper tantrums in regards to eating vegetables just blew that theory right out of the water!


But what I mean is that I see a simplicity, a child-like faith, if you will, in those who share your designer genes...and I have to wonder if it was these whom Jesus was speaking about when He said “suffer the little children to come unto me, for such is the kingdom of Heaven”.  There’s a certain child-like transparency and genuineness attached to that 21st chromosome…I have yet to meet someone with Down syndrome who falsely assumed things about people, or pretended to be someone they weren’t to impress or gain favor with others.  The children and adults with Down syndrome whom I’ve met love unconditionally, and express that love without hesitancy or expectation- they love simply and with purity of heart.


And isn’t that what we expect out of Heaven? A place where we can just be who God made us to be, untainted by jealousy or greed or hidden motives or sin? A place where we know as we are known, where people aren’t judged by their level of intellect or appearance or achievements…a place where we have fellowship with God Himself, who is love?
And so maybe in Heaven, dearest Lily, you will have the capacity to think and imagine and learn in a greater dimension than you’ll ever know in this life. Maybe when we get there I’ll find that although I wouldn’t change my perfect Lily for all the world, you will- like all of us who trust in Him- truly be made whole in a way that is greater than anything I’ve ever dreamed.  

But for now I’m content to embrace the little piece of Heaven that is again snuggled in my arms and breathing contentedly against my neck, her sweet sleepy sighs in rhythm with my own.


Loving my perfect Lily,

Mama oxox


cathy said...

Beautiful words from the heart.

I agree.


Education: Exploring Online Learning said...

Absolutely beautiful, as my own little one is still sleepy in her jammies after FINALLY letting me sleep until the late hour of 5 am. She points me to Heaven. She's no angel (her temper tantrums at this point are more because she WANTS more veggies... and to feed herself) but there really is something unique about the grace of our kids. (Veggies excluded.)

nicole said...

Love your words about their purity ~ this world needs them sooo much!

lovemy3 said...

So beautifully written! A former priest of mine told me shortly after Hailey was born that people with Down syndrome view the world the way God wanted it viewed.

Lily is beautiful!

sunnylattegma said...

And written beautifully.

Anna Theurer said...

Beautiful photos and beautiful words. We walk a fine line. . . we want our children to be seen as valuable, worthy, and perfect and promote acceptance and yet, we have to remember that they (Lily, Ellie, etc) will face struggles that so many "typical" children will breeze through. All children, regardless of genetics, are wonderful, valuable, worthy, and perfect. They (and we) are made fearfully and wonderfully in God's image. Maybe we all be united "under one roof" in Heaven!

Laura said...

Perfect. I love these thoughts and insights - Some of which I share and some which were new to think about. Thanks!

Krista said...

She is getting so big and more and more beautiful everyday. You are so blessed as I know I am!

Just Trying Not to Blink .... said...

Beautiful words and a beautiful little girl! The way your love for Lily and all of your children shines through all of your writing makes me look forward to reading your blog :)

Unknown said...

beautiful! that last picture of her got me! xxxxxxxxxxxxxx

Anonymous said...

I recently discovered this blog. It is so beautiful and i love to read it. You have given me further perspective on people with ds.


P.S. Lily is absolutely gorgeous.

Anonymous said...

I LOVE your pictures of SWEET Lily, and I especially love the sock monkey!!

JL said...

Simply beautiful, Lily and your writing. I have gone back to read your pregnancy journals, Lily's birth story, still haven't finished yet. So many times I was in tears by your love to Lily and shared your fears and concerns during those pregnancy checks. Indeed Lily is an angel, was blessed to be born into such a loving family. It hurts me as well by the thought that such a darling would struggle in life, every time I look at Lily's picture, it reminds me of my 17 mons old daughter, although she does not have DS, they are as sweet and lovable.

JC said...

Patti, I loved this post!! It was beautiful to read, and many things you wrote in here I have thought about...I have thought what it means that Russell will be made whole...Because like you said about Lily, to me Russell is just perfect the way he is now...So many things you wrote have me thinking a bit deeper.
I love reading your thoughts, thank you for sharing them :)