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!

38 comments:

Rochelle said...

So cute, conversations with daddy!! You know why we follow you! ;)

The Blitz said...

I'd love an invite--I follow a lot of blogs but yours is one of my favorites--I am a social work and work with kids with special needs and love to see how Lily is doing. If you have any extra invites, thanks!
Sarah
Los Angeles, CA

Lora said...

Good gracious, I've been reading your blog for so long and I just realized somehow I never became on official "follower"! So I'm #802 :) I follow the blog because it is moving and inspiring, because it led me to Reece's Rainbow and to my daughter and I love seeing how you continue to use this blog for a force of GOOD IN THE WORLD!!!!

Patti said...

Sarah...can you send me your email?

Tanya said...

I've been following for a year or so. I've loved watching Lily grow and become a sweet toddler. I also follow your daughter-in-love's blog :) I donate when I can ♥ I've laughed and cried reading both of your blogs.

I am the Momma to 5 beautiful, amazing, crazy and exasperating kids :) 3 grew in my body and 2 grew in my heart :)


I blog but I'm not very good at keeping up. I don't know how you manage your time so well.

I'd love to continue to follow both of your blogs.

xo Tanya

tan5kids@hotmail.com

SolaceMama said...

I forgot to ask fir an invite. Please? virginiadawn @ hotmail

Ashley said...

You know why I follow your blog :) I love you all and miss you guys so much! Me, my mom, and dad were just saying the other day how we miss your whole family. It's hard being so far away from such amazing friends! Gorgeous pictures of Lily by the way :)

SolaceMama said...

Clearly I can't spell... :/

I continue to be amazed in a sad sort of way that your house is destined for destruction. The teeny tiny blips I see in pictures seem as if it really is fairly nice.

And that video? totally sums up why I really want another babe. In fact. want may soon turn into need. Ah well, all in good time I supoose...

Erin Beaudette said...

I follow Miss Lily and her awesome blog because I love Reece's Rainbow and all that it stands for!! I also think Lily is absolutely adorable, her mom is so sweet and her sister takes amazing pictures!!
Thanks Patti :)

Jed and Kimber said...

I'm Kim :) I've followed you for maybe a year. I keep reading because I live close to you and I love RR too! I also follow Naomi's blog and we are foster parents, that's how I found you.
Actually, Naomi told me I should contact you because we just got back from Ukraine and now are starting the process to move our family there to work with orphans with special needs! Yay!!!! I think that extra chromosome is so special and would LOVE to someday parent a child with Down Syndrome. :)

Here's our blog: http://wholelottalovin.blogspot.com/
Thanks for writing. I love it!!!

Alaina and Kyle said...

Oh I'm laughing so hard because I was watching Lily's video with Beau. He's now in LOVE!! He kept "talking" back to her. So I posted a quick video on our blog from Beau to Lily :)

shantjoy2 said...

I came over to A Perfect Lily due to the Kehm fundraiser...we are In Houston with them.

I stayed cuz Lilybird looks like my 1st child with DS, Arabella Grace.
I also adopted a DS angel, domestically & it makes me so happy to see so many families with multiple DS kids!

I never get around to blogging, but it's out there @ shantijoy.wordpress.com

Heather

nicole said...

Lily's side looking evil eye was too much! I've been following for a looong time and that little stinker keeps bringing me back. That and her awesome Mama who has one of the biggest hearts I know.

My Little Wonders said...

I think I found you on Babycenter in one of the blog roll calls. :) I love reading your blog; I love reading your words, but Lily is the best part. :) I think Miss Katie would have a blast playing with Lily.

Stefany DeLorme said...

I love reading Lily's story :)It is great to hear a parent's view of having a child with a disabilitiy. I work as a caregiver in an integrated preschool, we have 6 children with special needs and 6 "typically" developing children. I love my job more than I ever expected. I had to leave a job as a nanny that I LOVED more than anything, but children grow up and I had to get a "real" job. So I was brought to CP ROchester's Augustine Childrens Center. Thank you much for sharing all the wonderful things Lily is learning.

sunnylattegma said...

I follow because I know you. I follow because I was smitten with your precious Lily. I follow because I love your beauty with words. I follow because I love your heart. I follow because I love children and so wish I could be a mama to one of these treasures from RR. I follow ....because I am addicted! lol

~Barb

Jenn said...

I e-mailed you the other day. but I don't think I said much beyond my name and that I was a reader. So, here it goes! :)

I'm a 22 years old and a newlywed, medical assistant, and a waitress hoping to start a family of my own soon. I was also diagnosed with Multiple Sclerosis when I was 14. It has made nearly every aspect of my life considerably harder, but it has also opened up my heart in so many ways. You and I have very different lives, and view some things a little differently- but I really resonate with what you have set forth to do to make a positive impact on this world. You and your family seem to be wonderful people! :)

-Jenn
Norwich,CT

http://weddingdazeski.blogspot.com/

CKopp said...

I couldn't understand a word she was saying...

Mrs. K said...

Grammi understood EVERYTHING Miss Lily was saying but I cannot reveal what it was all about because I have been sworn to secrecy. Besides it was just girl talk.

cathy said...

Be still my heart!

So. Very.Precious!!!!

xoxo
cathy

Day to Day Mama said...

I follow Lily's blog because one of my sons also has an extra chromosome so it's fun to read about Lily since she is a little older. Plus Lily is a total doll and I adore her. (As I was watching her video Luca was babbling the EXACT same sounds. So funny!)

I also love your heart for children. This blog is always a must read when it pops up :)

Michelle R. Slape said...

Absolutely adorable!!!! My Cody is 6 and when he gets so excited to tell us something he starts talking like that. :)

I have been following the blog for a few months now. Cody sports the same designer genes as Lily. :)

I blog about him on both my photography blog (www.mrsphotography.blogspot.com) and my everything else blog :) (www.mylifeahappylife.blogspot.com).

Team Lando said...

I started reading when I found out my baby would have Down syndrome... I kept reading because I like you :)

Lori said...

She is a smart little stinker...all those little facial expressions are hillarious!! I love the sideways glance and the smile with the nose crinkle...such a cutie patutie!!

Brandon said...

Just makin' sure...your fav nephew ever is on the "invited" list, no?

barronfamilyus said...

I'm not a first time commenter, but I don't comment often. Though I've been a follower for a little while now.

I was introduced to your blog through another I was following. The first post I read was a letter to Lily about what you wish people knew about DS. It was a beautiful post. And unique in the way it was written. I've been a follower since then :) Your blog has also introduced me to Reece's Rainbow. The children on there... I donate to the few I can.. But I just wish I could wrap them all in a hug and take them home! My heart breaks for them always.

Back in December, you also asked your readers for prayers for my son, Maddoc, to have a successful open heart surgery. We still have a long road ahead, but his surgery did go smoothly. And everyone who pulled together at that time to ask for prayers for that, well, they have a special place in my heart. Thank you :)

Kristen
barronfamilyus.blogspot.com

Shauna said...

I follow because it the closest I can come to being a real life friend since you refuse to move to So Cal to be near me and Reagan ;) Seriously though, I love that you make such a difference for orphans and you keep me inspired that my tiny little blog might a big difference to somebody somewhere...I remember 3 days after we got Reagan's dx reading EVERY POST you had written. Oh and Reagan listened intently to Lily's every word!

C, A, and girls said...

I haven't ever commented, but why not! I have followed your blog for a few months. Not sure how I found it, but I'm sure something regarding RR! Our gotcha day for our little girlie was on her first birthday, and we've been home almost a month! Lily seems very high functioning, and once we get her caught up, our daughter has tested very high functioning too. It's fun to look into the future as we don't have experience with ds. Our blog is bluepocketgirls.blogspot.com...it's mostly just pictures for extended family!

Sylvia said...

Just want to make a comment to Tam's comment. It is NOT impossible to adopt chldren with special needs internationally from Australia. It is much harder than the US and there are lots of restrictions but not impossible. Basically it is a financial decision because we have a public health care system, the govt. won't allow immigration visa's (and hence adoption) if a child has a diagnosis that is expected or has a high possibility of costing alot. And yes you may have to fight immigration but we were told that once you tackle them, they will allow more diagnoses than what they might in a first instance. We have adopted 2 children internationally, both with very minor special needs. One we had to fight immigration for but it only really meant adding a month to our wait time. Another thing to consider is that all children available for adoption have special needs, they have all being through loss and trauma even if their care has being excellent or they wouldn't be waiting to be adopted. Older children particularly have more layers of loss and trauma and are less likely to be picked by famililes so there are many children that still need families that are available for Australians to adopt. Happy to talk with any Australians who might be considering adopting internationally. We also have a small number of local children with special needs needing adoption each year. And many, many more if you feel called to foster.

Sylvia said...

Just reread Tam's comment and note, Tam that you said you weren't able to adopt in your state. My apologies, as obviously your circumstances are yours alone and not everyone elses. I hope that if you feel called to adoption you will find His way to pursue that. Blessings.

Melissa said...

I have been a follower for a few months? I'm not exactly sure how I came to your blog... I think through another blog I read. i continue to read because I've always had a heart for these beautiful children. I am a gymnastics coach and am blessed to coach a few precious kids with designer genes and special needs and love them all dearly. I love Lilys adventures... She is such a cutie!

Kathy McElhaney said...

I started reading via a link on a friend's blog (her daughter has DS.) My brother was born with hemophilia, so I grew up with someone very special who brought sunshine to our lives... just like Lily does.

Liz said...

I have no clue how I found your blog. My memory isn't what it used to be before having (7) kids. Maybe a Facebook link, another blog or even Reece's Rainbow, but the title alone made me click because I too have a Lily who has Ds. She is 8 1/2. We also adopted Miss Dasha (9, Ds) from Ukraine 3 1/2 years ago. Your Lily is adorable and I especially enjoy your beautiful pictures of her. My blog is www.ourversionofnormal.blogspot.com if you'd like to see our Lily.

Caitlin said...

I'm Caitlin :)
I'm 17 and live in Portland. I run Guardian Angels with Madison and Amanda Nine and Genesis House. I've followed your blog for over a year--either one of the Nine girls or Ashley Quinn brought it to my attention. We all love your family and watching Lily girl grow!

cara said...

Oh, how I LOVE, LOVE that look Lily gave out of the corner of her eye. That is truly priceless.

I have been away from my computer all week. And I was SO blessed to read about Gabe and his heart surgery and connecting with the other mommy. That is truly a miracle and blessing. God is using you Patti for His Work. It is clear that you are meant to be blogging. And I would just be SO sad if you weren't.

I will never forget the first time I ran into your blog after clicking on your pretty face on your profile from a comment you left on another blog. I found Notes from Home first and fell in love with your heart and family. Your kids reminded me of mine, although, I do not have quite as many. We had A LOT in common. And then I found Reece's Rainbow and was going through the same emotions as you that I was reading you go through on A Perfect Lily. I found A Perfect Lily through Notes from Home, I think. And I have be a follower ever since. How could anyone stop reading after getting one dose of Lily and your beautiful heart!!!! Love you!

My name is Sarah said...

Hi Lily!!

Yvonne said...

Is it too late to request an invite to your family blog? I've been reading your blogs for a while but I'm a first time commenter. I love that both blogs are real and full of your heart. I've been a fan of Reese's Rainbow for a while and and I thank you for all the advocating you do and for keeping them forefront in my mind.
ygronau (at) gmail (dot) com.

Lisa L said...

Hello! I've been following Lily's story for awhile, but not sure how I actually found you. I have a special place in my heart for children with ds and have always thought that I would have a little girl with ds. God has not blessed me with her yet, but I do have 3 other children. That stinks that blogger limits you to 100 people for a private blog. I have read your Notes from Home and also read your son and daughter in law's blog from time to time. I seem to go in spurts with being able to follow the blogs based on what is happening in our life. Anyway... love reading your posts and following your life with Lily! Hope things go smoothly with your move. We are also moving next month and I can totally relate to the insanity. (I think I've commented before, but might have used my old email address).