Saturday, July 31, 2010

Ordinary Miracle

Dearest Lily,

Today was a wonderful day!

For the past month I have been trying to get you to say "mama". I know you don't understand the actual word yet, but I want to do everything I can to teach you how to talk...and I know that all begins with babbling. Your brothers all took their time in starting on consonant sounds like mamama and dadadada...but Mackenzie and Abigail started their baby babbling around 6 months. Because I've heard so much about speech delays related to ds, I have really prayed about this. And while I'm not a speech therapist, I am a mother of ten...and that's got to be good for something, right?

So a month ago I began saying "mama" to you every chance I got. If we were nursing and you were gazing up at me, I would take your tiny hand, place it over my lips, and repeat mama over and over again. When we were playing on the floor together, I would recite mama again and again. While I held you on my lap, I would press your lips against mine and say mamama and pull you back to watch your response. I would hold you up to the mirror, your tiny face next to mine, and say mama so you could watch my face and yours. I took your little chin in my hands and moved your lower jaw up and down as I said mamama. YES- I have been obsessed:)

The past few days I have watched you playing on the floor, either holding your feet, or just lying on your tummy and pushing your chest up off the floor..and mouthing- silently- what looks like mamama. No sound came out, but it looked exactly like you were practicing those syllables. It almost looked like you were chewing on something.

Today I was folding laundry and suddenly I heard the most BEAUTIFUL sound I have ever heard in my life- MAMAMA !! I turned around excitedly and there you were, lying on your tummy, holding your head up proudly and babbling "mama" over and over and over again!

I ran to get my camera, hoping I hadn't just missed this "first" on film. Not only did you perform, but you started saying dadada and lalala as well!!




Lily, I have listened to nine of your siblings give voice to those magical first sounds over the years- and it has been the sweetest music to my ears every time. But nothing could have prepared me for the RUSH of emotions I felt when you uttered those sounds. No orchestra, no symphony, no musical masterpiece on earth could compare to the beauty of hearing my Lilybird sing.



As soon as Daddy got home, Jackson and Abbi and I ran to the front door to tell him what you had been doing- we were so proud!!




..and Grammi, if you're watching this, I removed the toy from under Lily's back when she rolled over:) ..


We are so, so proud of you, dearest Lily! Words cannot express what your words meant to me today. To quote my sweet friend, Ashley... I love you to the moon and back:)

Love always,

Mama oxox



Thursday, July 29, 2010

Urgent Prayer Request


A few weeks ago I asked for prayer for a new baby Verity, who has ds. She is the youngest of ten children, and she was supposed to have heart surgery when she was several months old. Her condition has worsened, and tomorrow morning the doctors will be performing emergency heart surgery. PLEASE keep this precious baby in your prayers, and also her parents, Joe and Susanna. Thank you so much!!!

Monday, July 26, 2010

Favorite Toy

Dearest Lily,


You have a new favorite these days...

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This little toy that Mama bought for you:) It makes a crinkly sound when you smoosh it, which you love to do. It is so soft, and it has the prettiest pastel colors... no wonder you love it. Mama bought you a huge bagful of learning toys on Craig's List..and of all of them, this is the one that holds your attention the longest every time.

It is so sweet to me that you prefer a certain toy when you are this young..I wonder if it will stay your favorite? All of your older siblings had different favorite toys, and no matter how full our toy box has gotten over the years, we can't bear to part with any of them.

I love how you snuggle with your soft little sun and pull it against your face to hold your binky in..

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...until you drift off to sleep:)

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I love you, sweet baby.

Always yours,

Mama oxox

Sunday, July 25, 2010

First food!!

Dearest Lily,

You ate rice cereal for the first time on Friday!!

When we were at your 6 month check-up with Dr. Pinter a week ago, he strongly encouraged us to start feeding you cereal. He said it will be great for developing all of your mouth and tongue muscles and awakening all the oral nerves for when you start to talk. Karen, your therapist said the same thing last Wednesday, and then Dr. Carr agreed at your 6 month check-up here in Corvallis on Friday.

Sooo, without wasting any more time, Mama picked up some rice cereal at the store for you. I fully anticipated you reacting like all of our other babies did..kind of sticking your tongue out with the first bite, spitting the food out, and not being quite sure what to do with it.

Instead, I got quite a surprise- you loved it!! Your eyes got all round, and your eyebrows shot up, you licked your lips and opened your mouth for more!! You swallowed each bite and kept opening up after each spoonful, and then you kept biting up and down on the spoon while making these cute little mmmmm-mmmm sounds! You ate like you've been doing this all of your life- it was so sweet!

After recording this video I got a better video on my phone..but I couldn't get it to load right on our computer:( Your response here was not as dramatic, but still cute:)




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This picture looks like you are turning away from the food, but you really were just moving your head at the moment we snapped the picture.

Daddy and I are so proud of you, little princess!! I can't wait to try new foods later on, and see what you like:)

You are doing so much lately- just rolling everywhere, lifting your head and upper body up when you're on your tummy and looking all around...
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And that smile of yours just lights up the whole room...

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I wish I could put into words how my heart feels when you smile at me...it's like a physical feeling of happiness...I think it's what someone meant when they coined the phrase "my heart is swelling with pride" or "my heart is bursting with love"...it really feels like my heart is going to explode when you look into my eyes and smile. I always feel like you can see right into my soul...I love how connected we are, baby girl:)

It's late now...time for my favorite part of the day- snuggling with you till you drift off to sleep.

Sweet dreams and love,

Mama oxox

Thursday, July 22, 2010

Would I change you?

Dearest Lily,

Lately I've been thinking about the changes you've brought to our lives. I've been thinking about life before Lily, and how even though we were so happy and blessed and felt that life was so full... there was no you...

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*thank you Karen, Lily's therapist, for allowing us to share these photos..we love you.

And though we wanted so much to have a baby without special needs, we never knew how very special that could be.

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I've read it many times since having you, and it's true...I never knew I wanted a baby with special needs...until I had one.
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Would I change who you are? Given the chance, would I take a "normal" baby over my Lily?

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Not a chance.

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If I could wave a magic wand, and take away that magical extra chromosome, would I do it?
Maybe for you, Lily.
Maybe so you could sit and walk and talk and read and live...without struggle.
But not for me.

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Would I trade the love that's grown between us as a family, since having you? Would I change your diagnosis so our lives would be easier, less complicated?

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If I could turn back the hands of time and erase all the moments of wonder and awe at the little things that we used to take for granted...would I dare?
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How could I?


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Because you know what, Lily? We've learned that faster isn't always better. That slowing down to enjoy each milestone and cherish each moment is a very good way to live.
We've changed our view of "normal" and "perfect"...because we found out how very perfect less-than normal could be.
We looked in your eyes and saw perfection ...those beautiful almond eyes that first told us who you were.
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Our hearts are overwhelmed with loving you, our cups are filled to the brim with joy..

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Would we trade your crinkly-eyed smile, your open-mouthed grin of delight...

for anything?

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Not ever.

Our baby girl, our gift from Heaven, our sweet perfect Lily, how did we know love before you?

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Tonight I'm remembering those words that God spoke to my heart so many months ago...my scared and anxious heart, wondering what the future held for my baby girl.

"If you ask Me for bread, will I give you a stone?"

He gave me more than bread, dearest Lily. He gave me a treasure greater than any I could ever have imagined.

He gave me you.

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All my love forever,

Mama oxox

Tuesday, July 20, 2010

Wordless Wednesday

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You Light Up My Life:)

Dearest Lily,

Mama is so proud of you these days. You are rolling everywhere! It seems you've figured out how to get places by rolling...tummy to back, back to tummy...you start out at one end of the room and end up at another!

And just when I told the doctor last week that you weren't reaching for toys- or your toes- you started doing both! It's almost like you heard me, and you wanted to prove me wrong!

You're getting prettier every day. I just look at you and fall in love all over again every time.

You seek me out too- I'll be across the room doing dishes or cooking, and I look up to see you watching me, waiting for me to notice you. Then instantly your whole face lights up- your crinkly-eyed smile that melts my heart. Sometimes you add a little huh-huh laugh to your smile, if you want to make me drop what I'm doing to run over and scoop you up:) How can I get anything done when you're so darn cute?

Your big sissy comes home today. She's been in San Diego for a week, and she misses you SO MUCH. I just know she's going to give me a quick hug and then race to wherever you are to smother you with kisses:) I can't wait to see your face when you see her- you two worship each other!

Just wanted to tell you once again- you're the sweetest baby in the world, and you make every day brighter!


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Love always,

Mama oxox

Monday, July 19, 2010

Guess who..

...this is..
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It's not Lily! It is Laura, and isn't she adorable?? She is almost 9 months old and she has the most amazing big sister, Ashley, who has an equally amazing blog all about her love for Laura. Ashley is an awesome photographer- just look at that photo! I have just fallen in love with Laura through her blog, and I know you will too..Go visit it right now! And leave a comment:)

Also, if you've never been to my daughter's blog, check that one out too. It is all about her love for Lily, and it is soooo sweet, if I do say so myself:)

Happy Monday!!

P.S. I just noticed I am getting a huge amount of traffic in the last hour- like a visit every minute to this blog...where are you all coming from?? Did they just mention Lily on CNN or something?? I'm curious!

Saturday, July 17, 2010

6 month video

Happy Six Months!!!

Dearest Lily,

You turned six months yesterday!!

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Daddy and I spent the day with you up in Portland at OHSU yesterday. When you were born, Dr. Pinter- a neurologist who specializes in Down syndrome research- came to visit you. This calm, brilliant doctor helped me so much in understanding that your diagnosis was not grim, but full of promise. I remember him saying in the lottery of disabilities we lucked out. Of all the trisomies and chromosomal conditions, Down syndrome is the "best" one to have, as far as functionality, intelligence, etc.


Dr. Pinter is one of nine children..one of his brothers was born severely handicapped, in fact as severely disabled as someone could be. Yet his family loved his brother and advocated for him, and they made his life the best that it could be. It was so clear to me as we talked that his love for his brother had been one of the factors in choosing his profession. He looked you over before we were discharged from the NICU and said he wanted to see you again at 6 months. He gave me a wealth of information- websites, book recommendations, facts, charts...it was a lot to take home and delve into- and I have! I am always reading, always studying, always making sure we know all about your diagnosis so we can give you the best life possible. It is exciting to me how far research has come, and how far it will go in the future.


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So yesterday we returned to Doernbecher's Children's Hospital to see Dr. Pinter and a host of other specialists. The first thing they did was weigh and measure you. You are now 10 lbs. 7 oz. and 22 inches! You are in the 10th percentile for height and 25th for weight on the Ds chart (adjusting for 3 weeks early.) Dr. Pinter was happy to hear that we had pushed it through with breast feeding, and that you are now exclusively nursing. What a long way we've come from wondering if you would ever get it!



You had your hearing checked...even though you passed your hearing test at birth, babies with Ds are at risk for hearing loss, because of their small ear canals. And you DO have small ears!! This, combined with your stay in the NICU merited another hearing test. (The audiologist explained that babies who spend a week in the NICU after birth have a greater risk of hearing loss..probably because of their need to be in the NICU in the first place.)



Unfortunately you had fluid in your ears- common for babies your age with Ds- so they were not able to get a good reading on your hearing. We will have you re-tested in 2 months, but Daddy and I are confident that you are hearing well. You turn your head easily in response to us calling your name, you startle at the dogs barking etc. But we do want to make sure the fluid goes away. The audiologist explained that prolonged fluid in the ears can hurt your speech development (or cause infection). I asked her what we can do to address this, should it continue to be a problem, and she said either antibiotics or tubes would be the solution. Either way, it gives Daddy and I something to pray about!
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You also saw a speech therapist. Her name was Rebecca, and she was very kind and informative. She asked us a slew of questions- do you babble, coo, smile, laugh, respond, alert us when you needed something, demonstrate different cries...and did you know your siblings names??? I kid you not, Lily. I had to answer no to that last one. I have yet to see any of your siblings recognize each other's names at this point:) I think maybe a Mommy needs to help put that questionnaire together! However, we answered a resounding YES to all the other questions- you are a chatterbox!


Next you saw a physical therapist and an occupational therapist. They played with you and asked many questions, and they assessed where you are, developmentally. They did all the things your Early Intervention therapist, Karen, is doing with you. I asked a ton of questions, and they were ready with all kinds of suggestions for how to encourage you in reaching new milestones.


Lastly, Dr. Pinter came in. He was as kind and informative as when you
were born. If I were to recount all the information he gave us, it would take me hours to type! I felt like I was taking a crash course in genetics, Down syndrome, and life in one half an hour visit.


Both the therapists and Dr. Pinter were very happy to see how alert and connected and responsive you are. They were happy to see you holding your head up so well, lifting your upper torso up with your arms while lying on your tummy, rolling both ways, and starting to sit up with help. You are not reaching for toys quite yet- you are too content to keep your hands at your mouth, stuffing as many fingers in as humanly possible:)


When we told the doctor about you rolling over since birth, he did a double take. "Birth?" he asked. I told him how I had video taped it, because I knew it would be so hard to believe later. I said he had warned me in the hospital that babies with Ds rolled early, so I wasn't terribly surprised that you did..he said he had meant early, as in 2-3 months, not since birth! He asked me if I minded sending him the video- he speaks on Ds at many support groups, etc. and he loves including videos and photos whenever he can. We said of course we didn't mind! I also told him about your pucker-and-pop trick, and how we video taped you doing it in response to us. He asked for that video as well. It is so sweet to think of other families being encouraged by those videos of you!


We talked about how fascinated with people you are, but how toys aren't in your "sphere" quite yet. The therapists explained how to develop your interests in other things- by interacting with you with toys, etc. This can be done with puppets, books, light up toys...and all of this is important in cognitive development as well as speech development.


The best news Daddy and I heard yesterday from Dr. Pinter was that our family is the best thing you have going for you. He said no drug can do what a happy, involved family can do for you. Your siblings constantly engaging you, playing with you, loving you- there is no therapy better for you than that.


It was SO encouraging to hear that the things we are doing are working. I am always questioning this- are we doing everything for you we can? We can't afford twice weekly therapists..and frankly we just don't have the time for it. But Dr. Pinter reassured us that what we are doing with you, just in the daily life of a big family, is what will help you the most. There is always someone here to make you laugh, read to you, tickle you, hold you up to a mirror, encourage you to crawl...we have a host of "therapists" built in.


Dr.Pinter said you would have to have your blood drawn to re-check your thyroid. Sometimes this is a problem for babies with Ds- so far it hasn't been for you, but we need to keep monitoring it. As we said goodbye to Dr.Pinter, he made sure to let us know that we could email him at any time with questions. Lily, it is so wonderful to know there are experts available, and we are not in this alone.


We headed to the lab, where two sweet phlebotomists were waiting to draw your blood. They tried your left arm, but you have never bled very easily. Mama's heart broke as they tied the tourniquet on your right arm and drew blood...you cried harder than I've ever heard you cry. Daddy held your other arm and soothed you- Mama had to sit down to not pass out. I've never been very good with blood- but seeing my baby girl cry out in pain was just too much. When they finally finished, I scooped you up in my arms and burst into tears myself:( I don't know how those people want to go to work every day!


Finally Daddy and I headed to the Cafeteria- just for old times' sake:) Lily- I can hardly describe the joy we felt at knowing how far we've come in 6 months. Six months ago Daddy and I were eating all of our meals in that little Marquim Cafe, praying earnestly to be able to take you home to your anxious brothers and sisters. We would break down sometimes over dinner or lunch, expressing frustration over your seeming lack of progress in bottle and breast feeding. It felt like we were a million miles away from home, not just 100. Everything was so surreal- being so isolated from friends and family and home wore on us. We kept telling ourselves- one day we're going to be looking back on this week, and it will all be a distant memory. And it IS- -thank God! You are healthy and happy and deliciously adorable and WE LOVE YOU with all our hearts!


These past six months have been the best months of my life. I have learned so much, and grown so much as a mommy and person. I've experienced greater joy than I knew was possible, I've met so many wonderful new people and made so many new and lasting friendships. Our family has grown even closer- and I thought we were as close as a family could get! Having you has opened my eyes to a whole new world, where once missed milestones are now celebrated as monumental events, and the simple things are made splendid..a world where new adventures await around every curve in the road, and life just gets sweeter and better.


Happy 6 months, baby girl!!!

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Love you forever,

Mama oxoxox

Thursday, July 15, 2010

Looking Ahead

Dearest Lily,

Since having you I have found so many new places to go...namely, other blogs. I love reading about other babies who share your designer genes. I love seeing what fun we're going to have together in the future- learning, growing, reaching new milestones. I love reading other mommies' perspectives on raising children with special needs. What's so neat is seeing how similar other people's journeys are, and realizing we can make it through.

I have so many favorites, and I confess I'm addicted to blogs about these special kids.

There's another Lily, who is 2 years older than you, and so so cute. There's beautiful baby Grace, and adorable Mattie, sweet Nebraska, and darling Miss Em.

There's Faith, who looks so much like you, Lily. And Charlie, who I am in love with- I wish I could set you two up some day! There's William who is is the cutest little boy..

There's beautiful Nella , who is just a week younger than you...her Mommy's blog has a huge following, but she took the time to answer questions I had about therapy.

There's Joel and Jack Jack whose smiles melt my heart, and Claire who has the CUTEST hair! Nate has the sweetest eyes, and Ragen is just a doll. Abbie's mama is going through this journey at the same time I am, and Roo's mama is miles ahead of us.

Avery's mommy wrote a book that helped me so much- and when I emailed her, her kind words encouraged me even more.

There are young mommies, like Austin's mommy, and Grady's mommy, and Owen's mommy, and Hunter's mommy. There are mommies my age, like John Michael's mommy... and families with LOTS of children like us- Ruby's family and Simeon's family and Verity's family.

Then there are my heroes- families who have adopted children with ds after giving birth to their own babies with ds...families like Sophia's and Alina's and Bella's.

And other heroes- Ella's mommy, who is watching her baby girl go through chemo...or Carly's mommy, who is still grieving the loss of her beautiful daughter.

Lily, having you has opened the door to a whole new world. It has opened my eyes to the fact that so many people have burdens to bear in life far greater than mine. Down syndrome is the least of our worries. There are mamas out there who don't know if their babies will live to see their first birthday...Mamas who feel they don't have any options but to leave their babies at orphanages because they are so terribly poor and unable to help them... Mamas who lost children to health issues related to ds, Mamas who are battling through those health issues right now.

Those mamas weigh heavy on my heart today- God, help them with the issues they are facing, console and comfort and encourage and heal these Mamas and babies and children and families. And thank You Lord, for helping me to appreciate the good things in life. Thank you for my Lily.

Loving you more each day,

Mama oxox

Prayer Please

Dear friends,

Can you please be praying for a little baby named Verity? She is just a month old, and she needs heart surgery. I met her mommy through blogging- Susanna has 7 boys and 3 girls, just like us. Verity has ds, and an av canal defect (what we thought Lily had.) I'm posting a link to her blog-
The Blessing of Verity. Will you visit her blog and pray for Verity? Thank you so much!

Love,

Patti

Sunday, July 11, 2010

To Those Who Love Lily

Dear Friends,

I started this blog when I was pregnant with Lily, in the form of letters to her. It wasn't meant to be a public blog at first, but just a mommy writing to her little girl. I have always kept journals during my pregnancies, as a way of keeping track of my symptoms, feelings, doctor visits, etc., so that I could compare each pregnancy. ..and also because I love to journal. It is therapy for me- when I just don't know how to deal with life, it has always helped me to "get it all out" through writing.

When I became pregnant with Lily, I started a journal to her in a notebook, just as I had with my other babies. Around my fifth month, when we learned that there were some medical concerns, I started this blog. I wanted my family to be able to come here to read about updates concerning Lily, so that I didn't have to repeat every doctor visit in multiple phone calls, emails, etc. This way, if people were interested in all the details of my pregnancy, they could come here for information..and if not, well, that was okay too. I just needed a place to record everything, and if people wanted to come along for the ride, that was wonderful.

I had intended on ending Lily's journal when she was born- just as I did my other pregnancy journals. But when we received the diagnosis of Down syndrome, I found myself needing this place more than ever- as a way of once again "getting it all out". If you've followed Lily's story for awhile, you know I am pretty transparent. I write about every emotion I am feeling- the good, the bad, and the ugly. I don't see things through rose-colored glasses- sometimes life just hurts. But there is also incredible beauty in the midst of our darkest moments, and I hope that my writing testifies to that just as strongly. I have received criticism from some for being too honest at times..but my letters to Lily are really just to her, and not to anyone else. And sometimes the truth is a little painful, and often it shows just how far I have to grow as a mommy, a person, and as a child of God. I'm all too aware of my faults in all three of those areas- thank God for the blood of Jesus that cleanses me, and thank God for His grace and strength when I am weak and flawed.

As a mommy, I want so much to be able to connect to Lily- I want her to know my heart like I know hers. I want to have intimate conversations with her some day, I want her to be able to relate to me at every level. And honestly, I don't know that that will ever be possible. I don't know what the future holds for Lily. I do know that I love her with all my heart, and I will pray and do everything in my power to help her be all that she can be. I want so much for her. I hope with all of my heart that she exceeds all our expectations. I guess in some ways, this blog is my way of connecting to Lily. One thing I do know- in Heaven, Lily will be whole. And I hope God saves my letters to her, so she can read them and know what we went through together.


So dear friends, tonight this letter is not to Lily, but to you.

It is to every family member, friend, and loved one who has prayed for Lily, loved her, held her, sent words of encouragement, and gifts, and letters, and followed her story. It is to strangers across the world, who have found your way here through other friends or blogs or word of mouth. It is to other mommies of babies with that magical extra chromosome, who have inspired me through your stories, who have gone before us and paved the way for a better journey into Holland and all its beauty.

From the bottom of my heart- thank you. You held my heart when it was close to breaking, you comforted me with your love for and acceptance of Lily, you changed me because of your unconditional love. You might never know what your love for Lily has meant to me- how it helped me know everything was going to be alright, because at the end of the day, we are loved. Having Lily and seeing your responses- an outpouring of genuine concern and care and love and emotion- has touched me beyond anything I have ever experienced. I am so humbled by the support you have given us, and I can't thank you enough.
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You held my baby and told me she was beautiful. You don't know what the meant to me. You smiled at her, and told us what a gift she is. You rejoiced with us and didn't say "I'm sorry" when you heard about her diagnosis. You said "Congratulations!" when she was born, and you celebrated with us. You prayed for Lily and believed God with us that her heart would be healed- and it was! You asked to see her, kissed her, smiled at her, commented on how much she looked like my other babies. You treated her as a normal baby, and not a tragedy.
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Sam and I just spent a week in Prescott, Arizona at our semi-annual Bible conference. I was overwhelmed at how many of you wanted to see Lily. You asked to hold her, told me how much you've prayed for her, told me how her story has ministered to you in some way. You loved my baby, and you'll never know until eternity what that means to this little mama.

Dearest friends...Nikki, Megan, Keri Jo, Casey, Karen, Sherry, Sally, Rachel, Carrie, Heather, Emily, Becca, Kaitie, Joe, Joey, Lerin, Helene, Erich, Kathy, Angie, Grandpa Dennis, Grandma Linda, Kerry, Michelle, Sophie, Anne of Alamo, Claire, Jenise, Dan, Peggy, Monica, Socorro, Marjiene, Jayrell, Dennis and Cindy... your kindness this past week was sweetness to my soul.
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Thank you for loving my Lily.
I love you,
Patti oxox

Friday, July 2, 2010

Red White and Blue

Dearest Lily,

I love...
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...your smile!

Love always,

Mama oxox

Thursday, July 1, 2010

Remembering

Dearest Lily,

I just went back and read this post, and cried a little bit, remembering. Thank you, Lord, for bringing us through.
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I love you, Lily Anne,

Mama oxox