Thursday, May 31, 2012

obsession

Dear Lily,



 You have a few new obsessions these days....


Your physical therapist, Bonnie, took note of one of them. She noticed the last time she came that you were completely enthralled with purses...you would rather be digging through a guest's purse, slyly pulling out cell phones and pencils and wallets, than participating in therapy. So two weeks ago, when she came again, she brought you a new purple purse and filled it with goodies from the Dollar Tree: a mirror, a puppy, a plastic cell phone, a ball, and a necklace.

Bonnie made a friend for life that day....


You go everywhere with that purse. You sort through its contents and array them in a neat semi-circle on the floor around you. You carefully place them back in your purse one by one, and quickly slip your arm through the black handle. Baby tucked under one arm, purse flung over the other, you are a girl on-the-go. You proudly walk around the house singing, going from room to room in search of people to show your treasures to. You enter the bathroom where I'm brushing my hair and hold your purse out for me to see. Unsnapping the latch, you pull out an item and tell me all about it.




"Lalalalalalalala," you say, describing whatever you're holding and dropping your baby for a moment to gesture with your other hand. You're just like your mama- you must talk with your hands. When I oooh and ahhhh over each precious item, you place them back in your purse and retrieve your baby from the floor. And off you go again, a little mother on a mission.


***********************

Obsession Number two:


You love to try on other people's clothes. If you see a pile in the laundry room, or behind your sister's door, you immediately drape whatever you find over your neck and come out to show us. For the last several months....for some strange reason... you were particularly drawn to...bras and underwear.

I am so glad you switched to your brother's t-shirts.


**************

Obsession number three:



Okay, I admit- this is Mama's obsession. I can't stop taking pictures of you. Even if I took 43 billion the hour before. But I just can't help it, because....

 

...you are such a little charmer! No wonder I have photos of you from every day of your life. Make that dozens of photos from every day of your life. I am fairly certain I have never taken so many pictures of a child as I have in the last two and a half years. 


My name is Patti and I have a Lilybird addiction. I freely admit it. 
But can you blame me?
Such cuteness is irresistible !




Loving my little obsession,

Mama oxoxoxox

psssst...

Hey everybody ! My mom has the cutest pictures of me to post...


...but today she and my dad are celebrating their TWENTY-FIFTH wedding anniversary! There's a post about it over on our family blog, Notes From Home.
Be back tomorrow !!!
Love,
Lily oxoxox

Monday, May 28, 2012

Remembering Kacey

I'm sure most of Lily's readers remember The Six Day Miracle that took place for the Dirkes family, who brought little Charlotte home in March. I've had Charlotte's "She's Here!" announcement on my refrigerator ever since -- it is a constant reminder of what God can do through the hearts of like minded people.

Charlotte's mama, Kelly, posted on her blog about another little girl who has stolen her heart and mine. I've blogged about Kacey before...she is still waiting for a family, and as you'll read below, that window of opportunity is closing. I went to bed last night with Kacey on my heart. Her beautiful face haunts me. And what kept going through my mind over and over, as I pictured her tiny misshapen hands and soulful blue eyes was this thought : What if that were Lily?  I went to sleep praying for a mama for Kacey...no little girl should spend her life in an institution, waiting for a family.

I asked Kelly for permission to re-post her words here. As thrilled as she is to have her daughter home, her heart still aches for those left behind. 

I'm asking Lily's readers...no, I'm begging Lily's readers to please share Kacey's story and picture, in hopes of finding her a family. If I had a fabulous prize or two, I would host a giveaway today to find Kacey a family. I cannot stand the thought of her waiting any longer.

PLEASE share Kacey's need wherever you can, and please pray for a family to go and rescue her.




 ************************


Hope and Heartache by Kelly Dirkes



The pictures of a little girl, snuggled close to her mama and papa for the first time, were images of redemption.  Her brown eyes sparkled as she realized that they were there just for her.  She reveled in the undivided attention.  She soaked up every ounce of care and affection.  She slept peacefully under a blanket made by siblings that were still half a world away.  She was loved.


Hope.



The pictures of a second little girl, absentmindedly playing with a dandelion stem, were images of loss.  Her bespectacled blue eyes showed no light or cheer.  She stared blankly at the woman holding the camera.  She watched longingly as her friend was buckled into a stroller and taken for a ride.  She never said a word, but her face spoke volumes.  She wanted to be wanted.



Heartache.






On their last day of visits, a caregiver asked that the first little girl’s new family take pictures of the children with special needs and advocate for them.  They had seen what love had done for the little girl during the week that her family was there in the special rehab facility.  So, one by one, the children were carried in, set down on a chair, and encouraged to smile.  When the caregiver pronounced the impromptu photo session complete, the woman with the camera knew that one child was missing—the child with the dandelion stem.



No one would want her, the caregiver insisted.  Her picture was taken anyway.  She was told over and over that she was beautiful.



Heartbreak.



Kacey’s time in her wonderful baby house is coming to an end.  She turns four in the coming months, and will most likely encounter attitudes like those of the rehab hospital caregiver with increasing frequency.



Can you heal Kacey’s heart?  Could you be her hope?


Friday, May 25, 2012

home

It's Friday...the renewed house hunt has been going on all week, and we are a bit frustrated to say the least. But you know what is so encouraging? A choir of amens in the comment section on my last post. Because lately I've really been thinking about what a home is...and apparently you all agree. I'll give you a little peek into my journal from last week by way of illustration...




It's 4:28 a.m. and I'm up praying...and as I was staring out our big picture window at the beautiful sheep fields God blessed me with eight and a half years ago, and crying because of how much I'm going to miss this place, I had a revelation.


It's not the sheep I'm going to miss when we move next month. It's not the wide open fields and the skyline of tress, or the big old red barn and silo that we stare at in the distance. It's not those hundred stars I can see at night, nights like these when my heart is so heavy I can't sleep because my chest is literally aching from sadness.




It's home.


One little word, and yet it's causing so much turmoil in my heart, that I've woken up almost every night since Sam told me we had to move with this awful feeling. And the only relief I can find when sleep is elusive - as always - is to come out here to my safe, comfortable, familiar living room, where I can stare out my window at all that I love, and pour my heart out to God.

This window has been my meeting place with Him through so many sleepless nights, I've lost count.

I remember the very first week we moved here, coming here to cry and pray, when markers for Down syndrome showed up on an ultrasound. We went in to see our baby at a routine 20 week check-up just days before leaving our old house...several days later, right in the middle of unpacking everything, I got the news that there was a problem with the results, and that I needed a follow-up sonogram 8 weeks later. Eight long, prayer-filled weeks of coming out to this beautiful view and asking God to protect my baby's heart and give me peace about whatever the future held. And two months later, when that follow-up visit showed a perfectly formed heart with no echogenic foci, (that turned out to be just that- "bright spots" on the heart), staring out that same window and thanking God for my perfect and healthy baby.

Relief with that pregnancy was short lived, because two months later I woke up one morning to blood and a frantic trip to the hospital- it was too early for our little boy to be born, so I was given medicine to stop contractions and put on strict bed rest for a week. Those seven days seemed so much longer than a week to me, and whoever named it bed rest, probably never tried it themselves...because night time as well as day time provided very little rest for an emotional and pregnant mama, fearful for the life of her baby. And once again I found myself staring out the window, although this time it was my giant bedroom windows that provided a perfect view of the fields and moonlight I had come to love. Prayer is what brought me through that trial, and when Noah Stephen made his glorious entry into this world on a rainy day in May, the heavens literally parted for our boy : "The sun is shining, Patti!" were the words of one of my very best friends as she looked out the hospital window just seconds after Noah was born. "God is smiling too," I thought, as I cried and thanked Him for the blessing and miracle of life.

Six years later another ultrasound brought mixed results as well on our tenth baby, only this time I added more to my prayer list: words like atrioventricular canal defect, hyperechogenic bowel, dilated renal pelvis and shortened femurs became common vernacular for me and God. And more often than not, this space beneath the window was my meeting place with Him, the only refuge I could find for those tear-filled 3 a.m. moments. One thing about life's curveballs is they can either drive you closer to God or push you further away, and I determined that those moments were going to serve a better purpose. Maybe I couldn't control the future, or change my baby's genetic makeup, but I could certainly "cast my burdens on Him" because truly He does care for me. Those times of crying before the Lord, hours spent under the old familiar window, while Sam and the children slept, are precious memories to me now. And when Lily arrived 17 weeks later, we thanked God for another perfect and beautiful baby. And we learned that words like Down syndrome didn't have to be a fearful thing at all.


Last month my 3 a.m. prayer sessions were renewed again...I found myself cursing that modern window into the future, the dark silent screen in the doctor's office that showed a tiny embryo, minus a beating heart. Long weeks of waiting and praying for a miracle brought me to my familiar routine...nights under the window once again had me staring out at a moonlit field, begging God to breathe life where there was none. A  month later, when my body finally acknowledged the loss, grief came in waves at night, threatening to overwhelm. I don't know how a tiny unborn baby can nestle itself in my heart so deeply, but it can and did. Four times of going through that loss have brought me to the same conclusion: dreams for a baby's future are hard to let die. But prayer and time and grace can carry the hurting heart through to the other side of grief, and although I still feel the ache of what-should-have-been, I know my treasures await me in Heaven...the ultimate home. 

Which brings me to my time beneath the window, and my revelation that what I'm really going to be missing next month is home. Because eight years is a long time to turn a house into a home, and I'm realizing that has very little to do with floor plans or neighborhoods or even big picture windows, and everything to do with the ones I love. It's a place where memories are made, a place where babies are born and babies die, a place where my children grow up and my husband and I learn to lean on each other and lean on God, a place where there is laughter and tears alike, and mixed in with it all is the grace of God. 








And I can take that anywhere.


And maybe I can't see that right now- because I'm clinging so desperately to what I know and love right here. But I'm going to trust that God is the same yesterday, today and forever, and He's going with us wherever we move to. I can find Him when I seek for Him with all my heart, big picture windows under the moonlight or not. And Sam and our children - from Jason all the way down to Lily - that's what home is to me.


********************


Some of my favorite comments from the last post (and I loved every single one of them!):

  lovemy3 said...
Honestly...I love our house but home is where ever the 5 of us are together. The kids even call hotels "home" when we are traveling. The only requirement is us :-)

Laurie said...Home is where I feel safe and loved. It is a place that I can truly feel comfortable and rest. It is a place to gather. It is our "nest".

April Vernon said...
I LOVE the picture of your sleeping beauty.

And in the words of one of my favorite hymns... "Anywhere is home, let come and go what may; Anywhere I roam, He keeps me all the way; So for His dear sake, my cross I'll meekly bear; Anywhere is home, if Christ my Lord, is there."





The winner of the Welcome Home bar from Scentsy, selected by random.org is

Kelly Marin said...
Home is where my family is:) Ive always wanted to try scentsy

Kelly, shoot me your address in an email and I'll put that sweet smelling bar in the mail to you stat!




And just because I know her Grammi is missing her terribly, here's a sweet little video of the Lilybird singing. In case you can't interpret, her "lalalalalala" means this: I love you, Mama, I love you, Jackson, I love my baby doll and I love Grammi too !!!   (I speak toddler-ease, don't you??)





p.s. Allison, this post is for you. oxox

Tuesday, May 22, 2012

random cuteness and a giveaway

It's one of those days where there are too many "to do's" on my list and not enough hours to do them in.

So no deep thoughts here, just some random cuteness to offer...








Sleeping Beauty






And how 'bout a little giveaway? Because it's been awhile since I told Lily's readers how much I love them.



 If you've never tried Scentsy, you don't know what you're missing. Scentsy began with a simple idea - decorative ceramic warmers designed to melt scented wax with the heat of a light bulb instead of a traditional wick and flame. I have Scentsy warmers in every room in my house, and while I love every fragrance Scentsy offers, there is one I always come back to....Welcome Home.

Warm and welcoming with cinnamon and spices, Welcome Home is one of Scenty's best selling bars for a reason. It's one of my absolute favorites, and the name describes it perfectly- it smells like home.

One random commenter on this post will win a bar of Welcome Home...just leave a comment telling me what home means to you.

And while you're at it- pray for one for us :) We had our little dream home deal fall through yesterday, but I do believe one is out there with our name on it....

Happy Tuesday !!

Saturday, May 19, 2012

it's hard

Life with Down syndrome is hard sometimes.

I mean look at this face...



Can you even stand the cuteness?!


And then look at this little grin...





Seriously, I can hardly handle the level of sweetness she dishes out-  every.single.day.


And then she pulls out her little shy-smile.




Unreal !!!


Do you see what I have to put up with on a regular basis??





It's so not fair. Nobody should be subjected to this level of adorable-ness.






And just when I think I can't possibly take any more, she does her little crinkly-eyed-smile trick.






See what I'm talking about ? It's just hard dealing with this kind of heart-melting behavior..and knowing I'll have to endure it for the rest of my life !!!!




Somebody call the waaambulance. I think I just over-dosed on an extra chromosome.

Thursday, May 17, 2012

don't do it...part two

If you missed my post called Don't Do It, please read that first...and if you did read it, you absolutely must read this post written by my friend Michelle over at Big Blueberry Eyes  .... I wish every expectant mama facing a diagnosis of Down syndrome could read it.



And as a side note- if you've been praying for the Rice Ranch and our house situation- amaaaazing news to come !!


Now unto Him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, unto Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen! Ephesians 3:21

Wednesday, May 16, 2012

DON'T DO IT

Dear Australian visitor,


The other day I was reading my feedjit...it's a tool on my blog that shows where visitors are coming from. I love to look at it from time to time, because my Lily gets visitors from all over the world- Finland, South Africa, Singapore, and more. Most of the time it just tells where a visitor came from, but sometimes it will show keywords that someone used to search for Lily's blog. Things like "Down syndrome absent nasal bone" or "ultrasound picture Down syndrome." I can just imagine what those moms are looking for...because I did the same thing when I was pregnant with Lily. With so many markers showing up on her ultrasound, and a decision not to have an amnio, I wanted to do my own "research". So I would google things just like that and hold Lily's ultrasound picture up to the ones I saw online, wondering if my baby's profile matched what I saw.

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And you know why I would do that, dear Australian visitor?


Because I was scared.


And I have a feeling you know that feeling well...otherwise why would you come here by using these search words:


 positive outcomes of aborting a child with down syndrome.
17:39:38 -- 16 minutes ago"





And so I just want to tell you, mama to mama....


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DON'T DO IT.



I know the future is so uncertain right now.. maybe because of the stereotypes you might have in your mind about life with Down syndrome. And even if you don't know those stereotypes, sometimes just the not knowing is the hardest part of all. What will my life be like after this, what's about to change and how will I cope?  Believe me, I know. I've been where you are.
And maybe right now you're reeling, and this choice seems like such an easy one to make...


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...or maybe  not so easy. Or else why would you come searching here for a "positive outcome to aborting a child with Down syndrome" ?


Can I tell you that you really have no idea what you'd be missing?

Because maybe you haven't had the privilege to see what I see every day, to know what I've been blessed to know over the past two and a half years. I'm pleading with you....

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DON'T DO IT.


Because life is a gift, and this gift? Isn't something you want to toss aside.


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Sure, it's your choice. You probably even have professionals encouraging you to make it. "She'll be a burden to society," they might be telling you, "and what about your other kids?"

Yes, what about them? Do you really want them to miss out on this....

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Because you can't undo it, you know. Once that choice is made, there's no going back. And maybe you'll trade fear for relief, maybe for a little while you'll feel certain that you did the right thing- the thing that was best for everyone, her included....


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But what will you really gain? Because I guarantee some day, if not now, maybe later, you'll come face to face with this face....


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...and you'll wonder "what did I really give up? Fear of the unknown? Temporary anxiety and grief? Or did I trade it all for the lasting pain that comes from wondering what I could have had, who she would have been ?"


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And I'll just tell you firsthand- you'll be missing out on one of the greatest gifts life could give you. Sure, she might not come in the package you imagined. She might take a little bit longer to do things the way "they" say she should be doing them. She'll have her challenges and struggles, no doubt.

But she'll teach you things you never imagined, twist and turn your heart in ways you never knew it could go, she'll wrap your whole being around that little crooked pinky, and she won't let go.


She's not a burden to be feared or a problem to be fixed, I'm begging you-


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DON'T DO IT.




There is a positive outcome for your situation....



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Don't throw her away.

Saturday, May 12, 2012

Happy Mother's Day: from my heart to yours

It's Saturday night right now...Mother's Day Eve :) This afternoon I was folding laundry and thinking about tomorrow and what a special day it is for me. I have ten beautiful children here, and four waiting for me in Heaven. This Mother's Day is a little bittersweet for me, as I would have been almost four months pregnant right now. But life is full of ups and downs, and I do believe that happiness is a choice we make. We can dwell on what could have been, or we can move forward and acknowledge all the blessings we do have. I am choosing to count my blessings.


And in doing so- I'm counting YOU.


One of the things I've loved doing since this blog began was my "mega" posts...that's what I call them, anyway. I've done them on Mother's Day, Thanksgiving, and a few times in between as well. These posts consist of photos or slideshows and usually take me days to put together - because I'm slow like that! This month has been a little crazy for me, so I had scrapped the idea of a Mother's Day post altogether last week. But then this afternoon at 3:00 I thought about tomorrow....and the thought of not doing my annual Mother's Day post just made my heart lurch. So I made a quick all-call - I thought I'd get maybe 25 photos to put in a slideshow. Instead, I received 77 - and if I missed one, please forgive me. I kept downloading photos from my email and then uploading pictures to Onetruemedia.com and even now I am worried that someone got lost in the shuffle. Thank you to every mama who sent a photo in, and if you missed my all-call this time, I promise there will be other ones in the future!

As you watch this slideshow, I hope you listen to the words...I chose this song as a tribute to all the wonderful, strong mamas I know, and I am blessed to call so many of you friends.

Happy Mother's Day from my heart to yours.......


******************

More Than You'll Ever Know
 by Watermark


Something brought you to my mind today
I thought about the funny ways you make me laugh
And yet I feel like it's okay to cry with you
Something about just being with you
When I leave I feel like I've been near God
And that's the way it ought to be...

'Cause you've been more than a friend to me
You fight off my enemies
'Cause you've spoken the Truth over my life
And you'll never know what it means to me
Just to know you've been on your knees for me
Oh, you have blessed my life
More than you'll ever know, More than you'll ever know

You had faith, when I had none
You prayed God would bring me a brand new song
When I didn't think I could find the strength to sing
And all the while I'm hoping that I'll
Do the kind of praying for you that you've done for me
And that's the way it ought to be...

You have carried me
You have taken upon a burden that wasn't your own
And may the blessing return to you
A hundredfold,
A hundredfold


'Cause you've been more than a friend to me
You fight off my enemies
'Cause you've spoken the Truth over my life
And you'll never know what it means to me
Just to know you've been on your knees for me
Oh, you have blessed my life
More than you'll ever know, More than you'll ever know


 *a word about the slideshow- if you can't see the video player above this, refresh your browser - sometimes One True Media doesn't load immediately. Also...the music runs out before the pictures do- because I had some last minute photos come in and I just could't turn them down :)


Did you see the adorable little guy at the end of the slideshow with the huge grin on his face?



His mama Julia included these words with his photo, and I had to share them with you.

This is my sweet boy, Gabriel. He has Hypoplastic Left Heart Syndrome, an AV Canal Defect and Trisomy 21. He is in the hospital right now having a hard time recovering from his heart surgery that was on April 10th. I haven't seen him awake for the past month, missing him terribly. He is 8 months old :)


I cannot imagine not seeing Lily awake for a month straight. Will you pray for Gabe, for a quick recovery ? I know his mama is so anxious to see that beautiful smile again.


And speaking of beautiful smiles....


From his mama, Sherry : Here is a recent picture of my Oliver. Even 3 months into his leukemia treatment his "perfectness" and beauty takes my breath away.


Will you pray for Oliver? You can follow his journey on his CaringBridge page (you need to create an account to view it, but it is super easy to do!) and if you'd like to donate to help defray all the costs involved with his treatment, you can do so HERE.



And finally, I just wanted to take a moment to thank one of the bestest moms on the planet- Thank you, Mom - I love you and I miss you more than words can say. oxoxox





Happy Mother's Day !!!