Thursday, June 28, 2012

final post

It's our last night at The Rice Ranch tonight...


I've shed a lot of tears this past week over leaving my home. Lots of memories here, not the least of which include nine months of carrying a hidden treasure inside me...



It's been a busy, exhausting week, packing and cleaning and squeezing in the daily grind of cooking and laundry. Cutest moment of the week: we took the kids to see the new house the other day- Lily went from room to room to room, talking NON-STOP. She kept pointing to everything- the walls, the ceilings, the toilet- and telling me what she thought. "Lalalalalalalala!!!" Eyes rolling, hands gesturing wildly, it was clear- she loved her new house.



I have to admit - I'm such a sentimental, sappy person, that I've really struggled with saying goodbye to my house. But seeing Lily's excitement....and the same happy anticipation mirrored in her siblings...goes a long way to curing the moving day blues. 

Plus - new adventures await us, and I am getting a little excited to see what those may be! (And I bet y'all were getting a little tired of seeing the same backdrop for all of Lily's pictures anyway !) 



 The final boxes are waiting to be packed up, our moving van arrives early tomorrow morning, and it's time to wrap up my final post from The Rice Ranch. So I'll end with a quote from one of my favorite characters from one of my favorite books...


"When I left Queen's my future seemed to stretch out before me like a straight road. I thought I could see along it for many a milestone. Now there is a bend in it. I don't know what lies around the bend, but I'm going to believe that the best does. It has a fascination of its own, that bend,"
- Anne of Green Gables



See you on the other side !

Monday, June 25, 2012

sharing my heart

I told myself I wasn't going to do it.
I'm in the middle of a moving project- which for our family is like transferring a small army.

I have boxes lining my walls, laundry coming out my ears, and I'm pretty sure Lily is covered in packing tape and black sharpie ink at the moment...I really don't even know what day it is, except T Minus 5 days 'til moving day.

I have a list of to-do's that stretches across the living room, through the front door and down our eternally long arborvitae-lined driveway. And that's just today's to-do's.
 So I told myself I could not possibly fit any fundraising in for this month or next.

However, several little angels crawled up into my heart this weekend and refused to budge....




Emilie and Abigail's parents are leaving in just a few weeks to see them for the first time. They have been HARD at work, hosting pancake feeds, pizza parties, garage sales, selling darling handmade drawstring bags, hosting a puzzle fundraiser (still ongoing!)... and Jennifer messaged me the other day that she might be willing to auction off her organs as well. 

Just making sure you were reading. But she really did message me that.

Because Jennifer is like that- she would sell her organs or give you the shirt off her back if she thought it would save an orphan. She is one of the sweetest mamas in blogland I have the privilege of knowing, always helping other adoptive moms in spite of the desperate need they face in fundraising themselves. 

I am blessed to "know" Jennifer through blogging....last summer she found Lily's blog through a friend's FB link...started reading blog after blog promoting Reece's Rainbow...felt stirred to adopt a child with special needs... and today she and her husband are getting ready to travel to Eastern Europe to meet their TWO daughters.

And the biggest thrill for me?

Jennifer lives 45 minutes away from me. 

I am going to finally get to meet some of the orphans I've been praying for !!!

Plus Jennifer is pretty cool herself ;)


SO why am I telling you all this?



The Willis family is about two weeks away from traveling. Because of increased and unexpected costs, not the least of which are summer airline rates, they are about $500 short for this trip. They've already raised $14,000, and believe me when I say this family has done everything short of organ sale to do that. 

I have a feeling Lily's readers could meet that need in a day. Because I've seen you help raise about ten times that amount in a day recently for the Dewberry family.

You can go HERE to donate to the Willis family.




The next little angels to crawl up inside my heart?





Look at those beautiful girls!!! Olga and Vanessa. Priceless treasures, being rescued by the Abell family. Their mama emailed me over the weekend, and they are in desperate need themselves of finances for their next two trips. They've already traveled once to visit their girls- they're waiting on a court date, and like the Willis family, they face extra unexpected costs.

I've lost count of how many fundraisers the Abells have held to bring their girls home. They've been hard at work for a year and a half, and they are praying like crazy for miracle money.
Those two little angels have been waiting all their lives for a family. They have three big sisters waiting to spoil them to death when they get home, and an Auntie Patti who can't wait to shower them with hugs as well.

Jenn is also one of those sweet mamas who goes around promoting and helping everybody else's adoptions, even when their own financial needs are so great. She emailed me when they were in Eastern Europe telling me how much she dreaded coming home to have to fundraise again. The judge from the region the girls are in required extra visits for the girls, meaning extra time spent in country, which means extra time off work for Chris. This is part of the hard work of adoption- sometimes things take longer and cost more than you originally planned.

One of Jenn's friends is hosting a FANTASTIC auction for this adoption. SO many wonderful items are being auctioned off...



Please go HERE to find out how to bid on items and help rescue Olga and Vanessa.



And finally....



Little Oksana!

This little princess has a sweet single mama committed to her adoption. I love what Jody's FSP page says about her family's decision to adopt Oksana:

She and her children believe that they are called by God to minister to orphans and through such ministering bring glory to God.  Her oldest son says, “Having a family means more to me than anything and I cannot imagine not having that.  I think we should share our family with someone who needs it …”

Oksana is six years old and in desperate need of being rescued quickly. I am so touched by the heart of Jody, already facing the challenges of being a single mom, and now opening up her home to a child with special needs. I would love, love, love to see Lily's readers give The Johnson Family's family sponsorship page a boost this week to help speed up this adoption.



And because I am going to be posting so sporadically this week, I thought I'd give you a glimpse  of another little angel who has crawled up into my heart....


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thank you for my pretty dress, Grammi !!
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Have a wonderful week !!!

Love, Patti

Wednesday, June 20, 2012

who I am

I am not a syndrome...




I love to play with my baby dolls, change their diapers, feed them cheerios. I carry them with me wherever I go, I tuck them into their beds, sing and rock them to sleep.

I am a child.


I am not "a Downs child".


I have my own personality. I look like my brothers and sisters and yet uniquely like myself (just like my siblings do!),  I have different moods and likes and dislikes, I am independent and strong-willed and very much my own person.

I am a child.



I'm a not a disability.


I can tell you what I want to eat, use a spoon to feed myself, use my manners to tell you "please" and "thank you", share my food with you if you like, and even ask for more.

I am a child.



I am not "retarded."


I am smart and precocious, I am curious and spunky and feisty, I am creative and intuitive and resourceful, and I love, love, LOVE to learn.

I am a child.





I am not a diagnosis.


I am an individual, a person, a little girl. I am healthy and strong and full of life, and I have a wonderful, promising future ahead of me.

I am a child.


I am not a burden.


I have parents who adore me, siblings who love to teach me new things, a family and friends who count me as one of their greatest blessings. I'm not a hardship or a problem, in fact I bring joy to the lives of everyone who meets me.


I am a child.


I am not a mistake.


I am not a chromosomal disorder or an error in cell division or a genetic deviation.



I was created and designed with a purpose, I am "fearfully and wonderfully made."


"Before I formed you in the womb I knew you, before you were born I set you apart." Jeremiah 1:5



I am a child.

Monday, June 18, 2012

reclaiming our children

My fellow blogging mama and sweet friend, Jenny, has written an excellent review of the book The Shape of the Eye, by George Estreich. I received a copy of this book from its publisher for review...
I am still in the middle of reading it, and embarrassingly only halfway through about six other books as well. That's what happens when you throw a moving project into the middle of a big family's already bursting-at-the-seams life ! (and off topic- if you've emailed me in the past week and have not heard back yet, my inbox reflects the current chaos in our household. I promise to reply as soon as I can!)

I could relate to this book for so many reasons, not the least of which is the fact that the author lives in my town, and his daughter was born at the same hospital Lily was. She was also treated up at OHSU, where Lily spent the first week of her life... I felt so validated about my feelings regarding that hospital stay after reading Estreich's own experience there.

Anyhooo...Jenny has written an excellent review of Estreich's book, and in particular what in his book resonated with her. I love what she has to say, and especially how this phrase stood out to her:

  "The desire to reclaim a child from diagnosis."



I hope you'll take the time to read Jenny's thoughtful review called What it is to be a "Downs" , as it speaks so well to what so many of us feel as parents of children with Down syndrome.

Sunday, June 17, 2012

to daddy from lily

Dear Daddy,

Remember the day the doctors told you and mama I might have Down syndrome? I do.

I was tucked away in Mama's tummy and you two were watching me on a screen in the doctor's office. I had several "markers", that according to the doctor, were giving him concern. He also said he thought my heart wasn't formed right, and that I might need someone to fix it when I was born. I remember listening to all of you talk about me, and hearing Mama's voice. She was asking the doctor a lot of questions, and she didn't sound nervous at all, just very quiet. Now that I've heard mama's voice for two years, I figured out that's what she does when she's scared.

But then I heard your voice, Daddy. And you weren't nervous or quiet at all. You asked the doctors lots of questions too, wanted to know exactly what an av canal defect meant, how soon we could find out if I really had one, and what could be done about it if I did. I think you were making the doctor a little nervous with all your questions! But I've known you for two years now, and I figured out that's what you do when you're faced with a problem- you fix it. You don't let things make you worried or scared.... the very first thing you do is trust God ...and the very next thing you do is figure out a way to help.



I remember the day I was born you were like that too.

Your voice was the very first voice I heard when I arrived in this world- I still remember how happy you sounded when you saw me..."She's looking all around ! Oh, her eyes are wide open !" You were almost laughing you were so happy, Daddy, and Mama says she knew I was beautiful just by the tone of your voice.



You didn't really think I had Down syndrome- because all you could see was love.


Later on, when they took me to the nursery to give me oxygen, you were the one who went with me to make sure I was okay. I was turning blue if I tried to breathe on my own, and I was fighting the nurses who tried to tape those tubes to my face. But you held my hands and talked to me, told me how much you loved me and how beautiful I was. You told me you'd always take care of me - I stopped crying and listened to you, Daddy, because I knew you would.

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And later that day, when they told you and Mama that I had to go up to the big hospital in Portland- two hours away - you told the doctors you were going with me in the ambulance. Mama was crying, and she was so so sad...but you promised her you would never ever leave my side. And you didn't.

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You stayed right with me that whole long night. The doctors had to do something called a blood transfusion exchange procedure on me - I cried a lot, but you were right there with me, making sure those doctors were doing everything right. You asked so many questions, because you wanted to be able to tell Mama everything they did to me.

And when it was all over, you held me in your arms and rocked me to sleep. I know you were tired too, Daddy, but you held me all night long. You called Mama to tell her I was doing just fine, and you told her you wouldn't leave my side until she got there in the morning. And even though the doctors told you I probably did have Down syndrome...I could tell you weren't scared. I could tell you loved me just the way I was, and that nobody had to convince you I was perfect.

 
And ever since that night, I've been a Daddy's girl. I had a hard time nursing at first, and a hard time taking a bottle too. But you were always the one who could get me to drink all of my milk. You set your alarm every night for the first month I was home, so that you could give me my 3 a.m. feedings and Mama could rest. I could tell you loved taking care of me, Daddy. You kept telling Mama that you never had that opportunity with all my brothers and sisters, because none of them took a bottle. You talked to me late at night, and told me how much you loved me. You told me I would always be your baby girl.

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When I got older you wrote me a letter. Mama writes me lots of letters, and I love them all...but your letter is the best, Daddy. (Don't tell Mama I told you that!) Here's one of my favorite parts of that letter:



"It is so strange to think that your mommy and I came up with the name Lily before you were even conceived! (Make your mommy tell you the story, it's very interesting.)
 But maybe there was a reason that God gave us that name, because you have brought color and texture to our lives! Just like a flower can brighten up a room with its beauty and fragrance, you have brightened up our family with the beauty that is uniquely LILY!"

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I"m so thankful for you, Daddy. And more than ever, I want you to know how much I love you too. I never have to worry about anything in life- because not everyone might feel the same about my extra chromosome. But it doesn't matter what anyone thinks...it really doesn't matter how anybody else sees me, because I know my Daddy sees me as his perfect Lily...





 
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 Happy Father's Day to the best daddy a girl could have...



Love always,

Your Lily oxoxoxo

Saturday, June 16, 2012

lilybird


"Children are likely to live up to what you believe of them."

~Lady Bird Johnson

Thursday, June 14, 2012

your turn

I am buried in boxes and packing tape at the moment, but I decided to take a little break to say hello...



If you missed it, our family blog, Notes From Home, is going private this week. I asked readers who would like an invite to send me an email telling me who they are... I have about fifteen spots left, so if you want to be included, please send me your info asap. I have been loving reading my emails the past few days...some of you are "long time readers, first time commenters", and it's been so much fun getting to know who Lily's readers are.


 I'm always amazed at how God uses Lily's blog to encourage others.

I read a blog post recently about blogger "demographics" - what kind of people read blogs and why. After reading all the comments and emails from readers, I told Sam last night: I think people who are drawn to Lily's blog have one thing in common... they have a heart for others.



They might be the twenty-somethings, just starting out in life, wanting to make a difference for children: I've had nurses or college students email me, saying they have a heart for orphans or children with special needs.

Maybe they're stay-at-home mamas like me, raising children to be thoughtful and kind and aware that no matter how many chromosomes you have, you are of value.

Perhaps they're grandparents, or relatives of a child with Down syndrome, or other special needs, who want to learn more about what life looks like for their loved ones.




Whatever your reason for following, I am blessed to have you along. I can't tell you how much I've enjoyed an inbox full of your stories this week, stories like Mary's:


I too have followed the growth of your family for a longtime. I became a nurse because of my love of caring for all people. As a teen I was given the gift a caring for my cousin who had various medical issues. He taught me compassion and how to truly love even though he could not walk or talk.


or Tam's:


If you ever doubt whether you should blog or not, just remember Taylor. $12,000 in less than three days. If it wasn't for your blog, I would not have known about Taylor, and would not have been able to donate. In the state that I live in in Australia, there is no option for me to adopt any child internationally, and I certainly would not be able to adopt a special needs child. Our laws simply do not allow it. What I can do to make a difference is donate, and your blog is one of the places that I come to to know which children and families are most desperately in need. You are making a difference. 



Or Amy's:


I am not religious at this point but spiritual in my own way. Nor do I have a child with an extra chromosome, but I am drawn to your blog because it's so real and quite frankly uplifting. I have also learned a lot reading your blog about accepting life with Grace and cherishing what I do have, often I forget those things. We all do.





So how about you? What's your reason for following along here on A Perfect Lily? I'd love to know your story, especially if you've never left a comment before. Lily has 800 followers, and she'd love to hear who you are too :) If you have a blog, leave your link in the comment section. If you have a question about Down syndrome, or an orphan you'd love to see featured on this blog, leave a comment about that. If you're a long time follower, leave a comment telling me how you came here, and what you hope to read about in the future....let's talk !

And speaking of talking, this little chatter-box has something to say as well...





It's your turn now!

Tuesday, June 12, 2012

clarification

Hello Tuesday readers...I know I said that posting here on A Perfect Lily is going to be a bit sporadic these next few months, as we pack up the Rice Ranch and head to a new home. (And it is going to be.) But I have a few things to address that are important, so here I am for the second day in a row this week.

First of all- I am getting the sweetest comments and emails from readers asking for an invite to this blog when we go private.

I went back and read my post from the other day and realized it was poorly worded...so to clarify: A Perfect Lily isn't going private, our family blog is. I've had some ugly comments and emails thrown my way recently. To the point that I feel it's better for our family's private life to stay, well, private. So if you would like an invite to that blog, please send me an email. I'm trying to limit those invites to people we know in real life, but if you've been a reader for a long time, state your credentials and I'll try to squeeze you in. Name, date of birth, social security number, political agenda...ha.  Just tell me who you are and I'll try to send you an invite. And if anyone knows if there is a way to send more than a hundred invites to a private blog on blogger, let me know. I'm almost maxed out at this point: apparently you don't have to live in Arkansas to have a multitude of extended family members ;)

Moving on...yesterday morning I was praying for direction about life in general, and blogging in specific. I really don't want to blog just to blog, and if you do it for fun, and you have the time to do it for fun, good on you. But as a mommy to ten, and nana to one delicious grandbaby, my time is extremely limited. So I've been getting some priorities in line here, and praying for wisdom on how to proceed with life as a blogger. And this is probably going to sound like I'm fishing for encouragement, but I assure you, I am not. I just really, really want to make sure I am putting my effort and time into something that is uplifting and useful, because quite honestly I am way past the point of blogging as an outlet for my emotions regarding Lily's diagnosis of Down syndrome. I'm sure as Lily grows older, other issues will come up that I will feel the need to "hash out" through writing, but at the moment the need is not really presenting itself.

Sooo, as I was praying yesterday for clarification about what to do...I had a little email come to me.



I'm going to copy it here in a moment, and thank you, Julia, for giving me permission to do so. Last month Julia sent me a photo of her son, Gabe, for our Mother's Day slideshow. Gabe was having a very hard time recovering from his open heart surgery, and Julia hadn't seen him awake for a month.


I asked Lily's readers to pray for little Gabe- it broke my heart that his mama had not seen that beautiful smile for a month.

Shortly after that post, I received an email from a New Zealand reader named Kylee...


Hi Patti,

My name is
Kylee Walsh and i come from Auckland, New Zealand. I recently had a most beautiful baby girl in February of this year and she has DS. 




 I would like to say your daughter is absolutely gorgeous and the images of her are just divine!!!!!!

I will get straight to it. Our daughter Charli has a condition called Hypo Plastic Left Heart and i noticed reading your blog about the wee man Gabriel who is currently in hospital???


I would love to be in contact with this family, if possible. I know it may not be appropriate for them, but if there was anyway you could pass on my email address i would be soooo grateful. Charli's heart defect isn't common here but with the DS attached - it is. Unfortunately in NZ, when most people find out they are carrying a baby with Trisomy 21- they terminate. As this is one of the worst heart issues to get, i have found no-one else who's child has HPLH and DS combined.


It is an extremely challenging time for us and to know there is possibly someone out there that i could talk/ relate to and support - would be wonderful!!


Many Thanks,


Kylee
and Charli

xx






I forwarded Kylee's email to Julia...and here's what Julia sent me yesterday:





Patti,

I wanted to get back with you and let you know how incredibly amazing your blog post was about Gabe.
 

I told (Kylee) about Boston, MA and Dr. del Nido and the miracles he is doing in babies like ours who would otherwise have no hope for survival. I sent her the other families names and had her get in contact with Boston's Children's Hospital.

She got word back that Dr. del Nido is confident that he can repair her little one's heart in one surgery. Now they are preparing and fundraising to get to Boston in the next 2-3 months to get their little one, Charli, the gift of a whole heart.


I wanted to let you know what an impact you made, just by posting Gabe's story on your blog, you helped save a little heart.


Dr del Nido does what no other surgeon in the world does, fixes little hearts who otherwise would be given a very short life.

:)


I am so thankful for you!

Julia

P.S. Gabe is doing very well, he had to have an extra surgery since he didn't wake up from his last surgery, but now he is awake and working on getting his muscles ready to be unintubated again.

He is doing amazing :)
 


Gabe, awake and recovering :)



To say that I needed a boxful of kleenex after that email...which came to me just minutes after an intense prayer session...is an understatement. I'm not a perfect person, or a perfect blogger, or a perfect Christian, but I do have a passion for children with Down syndrome. And if my little blog can help one little girl with an extra chromosome and a beautiful smile on the other side of the world...I am a happy mama.


Beautiful Charli

I asked Charli's mama for permission to use Charli's photos and story here...she sent me this:


Hi Patti, 

You are sooo welcome to use my story/photo and i actually owe it ALL to you! If it wasn't for your blog, we wouldn't be on the road to fixing Charli's heart :-)
Julia has been soooo kind, friendly and helpful to us and as any loving parent would do - we are fighting for our girl.

Pretty SCARY, but we find out in the next few days what the cost of Charli's surgery will be - gulp gulp!! Fundraising, here we come!!!
We feel so much love around us.

Thank-you again,

Kylee xo



I asked Kylee to send me a link to any fundraising page her family sets up for Charli, and I'm waiting to hear back. I would love to host a fundraiser myself for her family, and if any of Lily's readers feel led to donate a big prize for that, please contact me via email. 

And now if you'll excuse me, I have some priorities to attend to !!