Wednesday, August 31, 2011

I lied

                   Yesterday I posted an interview with Andrea Roberts, Executive Director of
                                             Reece's Rainbow Down Syndrome Adoption Ministry.

    It was a fabulous interview, and I am so glad that so many people had a chance to read it.

But I hope you'll forgive me, because I told a little fib...


I said I wasn't going to post today, because I wanted to run the interview for a few days....




But then Lily went and got all cute on me while I was taking pictures....




...and then she started doing her big girl tricks like standing...



...and then she flashed me the squinty-eyed smile, and I caved...



I mean, who could resist sharing a face like this???




Even when she sneaks off into the bathroom on a search and destroy mission.....




...she still has me wrapped around her bent little pinky. And she knows it.


So I decided to sneak this little photo shoot in, even though I said I wasn't going to post today....


And really the only thing I'm giving away today is a free dose of Lily Love.....


So please forgive me for lying....and just in case you missed it, please go read my interview with Andrea Roberts.


...shhhhhhh....we're not really here today......



Happy Wednesday!!

Monday, August 29, 2011

Interview with Andrea Roberts

If you've been a reader since the beginning here on A Perfect Lily, you've probably witnessed a sea change in my writing and blogging. What began here as letters to my daughter- a way to process the grief and subsequent joy that is often the journey of a diagnosis of Down syndrome- over time transformed into a platform to raise awareness for children overseas who share her extra chromosome.

I truly believe that learning about orphans on Reece's Rainbow and advocating for them is what turned the corner for me, as far as dealing with my emotions after Lily's birth. As any parent of a child with special needs knows, our love for our children is not what is at stake when it comes to processing those emotions...the truth is, no parent wants to see their child struggle, and it is because of our love for our kids that we wrestle with how they might struggle in life.

After Lily was born I began to read blog after blog that mentioned Reece's Rainbow....my list of adoption blogs grew and grew, until they pretty much dominated my blogger dashboard. Slowly God dealt with my heart about the fact that Lily is not suffering- she knows joy and she knows the love and acceptance that our family provides, and ultimately she will always be surrounded by those who love her. What more could I ask for, for my child ?

The children on Reece's Rainbow however, are not guaranteed any of those blessings in life. In fact, unless a family steps forward to rescue them, they are most certainly guaranteed a life of isolation and neglect and eventually cruelty, as they are transferred from baby houses to mental institutions. I've said it here before- if we can't stand to read about what happens to orphans with Down syndrome in other nations, we can click that little x at the right hand corner of the screen. But children on Reece's Rainbow don't have that option. They can't close their eyes and make their whole bad-dream-of-a-life go away, and there are few truer definitions of suffering than what they face. God forgive me, for ever closing my eyes to their fate, because the pain was too much to bear.

I am so thankful that God did open my eyes, through the gift of Lily, and so thankful that He did the same for one woman, many years ago. I remember frantically emailing Andrea Roberts last December on the first day of our iPod giveaway for Olga. The donations were rolling in faster than we could update, and we wanted to know how to let readers know they were making a difference. I heard back from Andrea almost immediately- she put me in touch with Michelle Zoromski, and the rest, as they say, is history.

Over the past 9 months I've been blessed by the friendship that has developed with this amazing woman. One of the distinctions that marks a person of character is their ability to deal with success as well as criticism...I'm honored to interview someone who has handled both with grace and integrity.

Please enjoy this interview with....




Andrea Roberts
Executive Director
Reece’s Rainbow Down Syndrome Adoption Ministry
http://www.reecesrainbow.org/





One of the things that has amazed me from the moment I "met" you through emailing last December was your availability. You must be one of the busiest women I know, and yet you take time to answer each and every email (and I bet half of them are mine!) 
First of all- HOW do you make time for everyone, and second- do you ever get a break? It seems with what you hear and read and see every day, your brain would constantly be focused on the need.  


 My heart is a servant’s heart.  I love to help people.  I always have.  In college I studied Spanish and Criminal Justice, but my career path has been all customer service, sales, marketing, etc.  I know the value of a fast response, especially when someone is asking about something as important and exciting as the adoption of a child.  I make it a priority to get back to folks as quickly as I can.  

As RR has grown though, that has become harder and harder.  I am blessed to have an amazing team of folks who assist with new family inquiries, setting up FSP profiles, disbursing grants, processing donations, etc.   They are the face of this ministry.  Fast response time is very important to me, and it helps to build a trusting relationship from the beginning.  

But yes, what we ALL do here at RR is exhausting.  There really is no real break, but that’s ok.   The team shares the load now, we make decisions together, we have a Board of Directors now, and I am so happy it isn’t all on me anymore! The burden, just for the children alone, is nearly unbearable some days.  It is easy to rejoice in all the funds raised and children found, but every day I get up, it’s right back to still working to save the others and find those who are still hidden away.  Everything I do is for *them*. 




Who inspires you

Renee Loux.  Anyone who knows her won’t need an explanation.  Her name and her life are synonymous with God’s grace, patience, kindness, peace of heart, service to children, and living for all God asks of us in this life.



I've watched you under fire for many of the past 9 months that I've known you. I've seen it get ugly, as far as critics and false accusations go, and I've seen you time and time again respond with grace and kindness...you even helped me to not take things personally, and to stop worrying about what others think by offering this sage advice: I know the truth, and that is what matters. 

So be painfully honest: do you ever just want to quit? When you work so hard to try to save kids, and there are still people who will find fault or question your motives- are there days when you say, "I just want to go back to being a mom!" ?

YES.  :)   But when that is what God wants, He will make it crystal clear!  For now….too many lives are still waiting.  RR is too much of a voice for those kids to just walk away from them.  Sometimes families have a difficult time in country for various reasons, and it pains me greatly because all we ever want here at RR is happy families with a smooth adoption process. 

 International adoption is a moving target, at best.  We have to try to keep up with the needs of every family’s personality, the changing statuses of some of the children, new laws, new travel reqs, ridiculous unexpected paperwork requirements…in addition to everything it takes to run this 501c3 administratively.  Some folks have a hard time relating to the heartfelt genuine-ness that we all work under…they just can’t believe that no money is involved at all (RR does not pay for child info and we do not get paid for any child matches).  We try to provide as much personalized service and attention to each family as we can for free. RR is a true non-profit in every sense of the word.  Our mission statement is the same as it was on the first day I started this website.  We love what we do (our whole leadership team), but it is draining sometimes!  The needs are overwhelming.  Trying to make everyone happy is impossible, but we keep on pursuing that goal. 

I could really use a LONG vacation, but you know what I talk about on vacation?  New ways to serve our children. :)  New graphics.  New awareness campaigns.  New slogans.  New opportunities to reach outside of the Down syndrome community and bring in some great visibility, one that will really make a social statement to the entire nation.  This is who I am now.  I swore when Reece was born that I didn’t want to be a flag waver, but in hindsight I can hear God laughing, like ROFL.  :)





A few months ago I was struggling with whether or not Sam and I were called to adopt. I told you I felt so torn because I have such a burden for adoption...and yet it appears that God is only calling me to advocate for children on Reece's Rainbow. You encouraged me by saying God had not called you to adopt either- but that we still have very vital roles in helping rescue children. I'd love to know more about that decision you came to...was it a gradual process, or did you just wake up one day and say, "This is what the Lord called me to do"  ? 
I love my children dearly, but I was simply not cut out to be a mega mom.  Reece is more than a handful just like he is, and he needs as much of me as he can get.   As RR grew, and more children were found, it became very clear to me what a valuable service this was, and that bringing another child into our family would significantly limit my ability to do what I do as the Exec Dir.  I get to live and love vicariously through each of our adoptive families.  Getting to meet those kids in person for the first time is an incredible feeling!   

 I know I am doing my part, and I love the vehicle that RR has become to make it possible for so many others to participate in the life-saving gift of adoption.  As we often say “you don’t have to adopt to make a difference!” 




What is a typical day like for you? 

Which 30 second increment would you like me to talk about?  Lol  My day is ever changing.  I can’t make a to-do list because the priorities change every 30 seconds, seriously.

We saw miracles happen in December during our giveaways for Olga and Kareen, and then in February for Peter and again in May for Albina. I've watched Adeye raise multiplied thousands of dollars for many other children on Reece's Rainbow as well. We've chatted through yahoo about the blessing and the curse of miraculous online fundraising events like this. Can you talk about the pro's and con's of these types of miracles?

  That is an interesting question. 

The miracle?  Self-explanatory.  Raises funds for a particular child, drives sometimes hundreds of new supporters to our website during that campaign, raises awareness for so many other kids at the same time.  It is beyond words to see this amazing Reece’s Rainbow family come together for those who really need it!!  

The curse….I wouldn’t call it a curse, more like the risk of disappointment.   When some families are able to raise $20k in 24 hours, but some families have no luck whatsoever…that they made a commitment to a child in the hopes that they too would have such a successful fundraiser and it just didn’t work out that way.   

When a need is brought to me, no matter who it is, I do everything I can every time.  RR leans very heavily on social media to get the word out, and we are honored to have been nominated for the Classy Awards “Most Innovative Use of Social Media”.  But in the end, it is up to those donors to give or not to give for a particular family or child.   I’m not God.  I don’t have a blank check to write for anyone. I don’t go begging.  I share the needs as they are brought to me  Each of our donors has different, personal things that touch them and compel them to give.  




We're getting ready to gear up for the angel tree project. I'm plotting and praying for how Lily's blog can be effective in finding a family for Artem, whom I've been a warrior for during New Years, Valentine's, Easter, and 5-5-5.  I've been blogging my heart out for Artem and still he waits. Aside from prayer and fasting and blogging and giving...what can we as Christmas warriors be doing for the children we are advocating for? Are there things that you see in the online community that you wish you could "fix" or address? What can we do to get our message out there better?  

Oh, the Angel Tree is such an exciting project, folks save up all year long just for that, and I think that is so cool!   The bottom line is that the more grant funding that is available for each child, especially these older kids and ones with significant medical complications, the better their chances of finding families.  That is why the Christmas WARRIOR program is so important, because each warrior is focused on raising funds and awareness for just one child.  The “tipping point” for many of these older kids (4+) seems to be $10,000 or more.  $1000 is a hefty goal for many warriors, let alone $5k or $10k.  So we start small and build from there.  But you can continue serving as Artem’s warrior until he DOES find a family, because he CAN!  What a joy it will be for this to be his last year on our Angel Tree, and for him to be UNDER his family’s tree next year :) I think you’re doing all you can, social media and lots of prayers are truly the best ways I know of to make a difference for each child.  Don’t be discouraged because other kids are chosen first, or because one warrior’s fundraiser isn’t as successful as another one.  When we see others struggling, we are at our best in terms of reaching out and helping to achieve goals. 

Last year was the first time we have ever had every child on the Angel Tree meet their $1000 goal.  We quadrupled our raised funds during that project from the one in 2009.  This year, as we celebrate our 5 year anniversary, we are setting an organizational goal of $500,000 *just during the Angel Tree*, from November 1- December 31.  Lofty goal, but I think we can do it.  I KNOW we can do it.  Christmas Warrior signups begin on September 15, http://reecesrainbow.org/angeltree2011/christmaswarriors   And as a note, donors of any faith or nationality are welcome. 



When can we have lunch together? ;)  

Any time, cyber lunch at Olive Garden maybe?  :)


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I hope you enjoyed this interview as much as I did...and I hope you don't mind, but Jack and Lily's Giveaway Wednesday will be postponed until next week, as I would like to run this post for several days.

And just to let you know- there will only be one more of those giveaways- can you believe summer is almost over?!?

In just a few weeks we'll be hosting a big fundraising giveaway here for a friend of ours who is adopting an angel from Reece's Rainbow. I hope you won't miss this chance to help an adoptive family bring their little girl home, as well as a chance to win some fabulous prizes!

In the days ahead we're also gearing up for the angel tree project by putting together an amazing giveaway for Artem, the orphan I mentioned above. It breaks my heart that he has been waiting for two years on Reece's Rainbow, and still no family has claimed him. If you would like to donate any items to a pre-Christmas giveaway for Artem, please contact me via email. We are looking for gift cards, large ticket items such as cameras, iPads, game stations, mini-vans...okay, just makin' sure you were still reading. ANYHOO, although I personally love homemade items, not everyone appreciates the value of such gifts, so please keep donations limited to those that have a specific monetary value. I hesitate to say that but if I don't, I know my brother will be offering an autographed photo of himself posing with Robert Mueller, and I really would hate to have to turn him down.





Happy Tuesday!!

something exciting coming up!!

I already blogged today HERE, so don't miss those adorable Lily pics if you haven't seen them yet.

This is just a little sneak peek post...

Tomorrow we will be talking with a very special someone here on A Perfect Lily...


Don't miss our exclusive interview with Andrea Roberts, founder of Reece's Rainbow!

It's going to be good!! :)

Sunday, August 28, 2011

just one

Dearest Lily,

A few days ago we received a package in the mail that made Mama cry. I still can't read the letter that was enclosed without getting tears in my eyes. It was from your friend Mia Kareens' family...




Dear Rice Family,


We wanted to once again tell you how much we love you and appreciate what you have done for our little Mia and for many others that have found their forever families. We don't know if we would have ever found our little princess had it not been for your selfless act of kindness to start a fundraiser on her behalf. We wanted to send you a little gift that we brought back from the Ukraine for you, along with a few bracelets....







The truth is, sweet Lily, we were a very small part of Mia Kareen's miracle. You see, there are quite a few people who have come here since your birth to read about you. Your life has already touched so many people. Last December that audience grew so much bigger- because God moved on so many hearts at Christmas time to save a little girl named Olga.  



What started out as our family's desire to help rescue a little girl with Down syndrome on the other side of the world, turned into a journey of the heart for so many others as well. What's amazing to me, is that our hope to save just one blossomed into a network of miracles, for so many more.





We could never take credit for the beautiful and miraculous work that has begun on behalf of the orphans on Reece's Rainbow. Because honestly, what we've seen unfold is the result of the One who is mighty to save, moving on the hearts and minds of so many.  People like Deanna, Cathy, Stephanie, Mitch, Ginny, Nicole, Cara, Barb, Elissa, Trisha, Krista, Susanna, Jenn, Katy, Adam, Julie, Sasha, Rochelle, Kelly, Cassie, Penny, John, Leah, Faith, Lori, Nikki, Tracy and Cole...and the list goes on and on...


...so even though we are honored and blessed to be a small part of the miracle that took place for Mia Kareen,  we know we share that joy with so many other who gave and prayed and shared until that little princess was home.




There are few things in this life that give such lasting joy and fulfillment as knowing we were involved in the rescue of a child. I am so thankful that God used you, sweet Lily, to open our eyes to the fate of so many others, and that He knit our hearts together with so many like-minded friends.

I'm so thankful too, for these wise words last from a dear friend, last December:

What you're doing is showing Lily and your other children and the other people in your community that LILY is worth this. That LC is worth this. That we would beg, borrow, and obsess ourselves to make sure they knew love and felt valued and wanted. That, if Lily were alone on the other side of the ocean, you would find her and rescue her no matter what the cost or how much dignity needed to be compromised.


The Starfish Poem
Once upon a time there was a wise man
who used to go to the ocean
to do his writing.
He had a habit of walking
on the beach
before he began his work.
One day he was walking along
the shore.
As he looked down the beach,
he saw a human figure
 moving like a dancer.
He smiled to himself to think
of someone who would
dance to the day.
So he began to walk faster
to catch up.
As he got closer, he saw
that it was a young man
and the young man wasn't dancing,
but instead he was reaching
down to the shore,
picking up something
and very gently throwing it
into the ocean.
As he got closer he called out,
"Good morning! What are you doing?"
The young man paused,
looked up and replied,
"Throwing starfish in the ocean."
"I guess I should have asked,
why are you throwing starfish in the ocean?"
"The sun is up and the tide is going out.
And if I don't throw them in they'll die."
"But, young man, don't you realize that
there are miles and miles of beach
and starfish all along it.
You can't possibly make a difference!"
The young man listened politely.
Then he bent down, picked up another starfish
and threw it into the sea,
past the breaking waves and said-

"It made a difference for that one."





I promise you, Lily: I'm going to do my best to make a difference for just one.


Loving you always,

Mama oxox


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

Dear Readers,

If you want a chance to help make a difference in the life of an orphan, please go HERE and HERE. These families are well into the adoption process, but they need our help to bring their children home. Because every child deserves the love that Mia Kareen knows today.

~Patti

Thursday, August 25, 2011

the people have spoken

Yesterday I asked a simple question here on A Perfect Lily.


Do you prefer the music here to be on auto-play, manual play, or not at all?

I have to say...I was floored by the response!

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Seriously, I was so shocked! First of all, that there were so many responses- other than giveaways and mega posts where I have lots of moms contributing pictures and thoughts, I have never had so many comments on one post. And secondly- I was seriously amazed that readers overwhelmingly agreed that they prefer to not have music set on auto play here! I am SUCH a music fan, and I really have always felt that music sets the tone to certain posts...so I totally did not expect that kind of response. However...

The people have spoken!

Bye-bye music!

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From now on if you would like to listen to music (all 3 of you) while reading Lily's blog, feel free to press play on the player on my sidebar. And a big THANK YOU for all your comments!

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Our second order of business is of course announcing a winner for Jack and Lily's Giveaway Wednesday. But before I do: I interviewed Jackson for this post...actually all I was doing was asking him to say "hi" for the camera...but because I did interview him a few weeks ago, he just picked up where he left off by telling me what he likes about Lily:)



Did you catch where he says "I like doing photo shoots.." Hmmm...me thinks big sister Mackenzie is rubbing off on her siblings!

The cool thing about Jack is, he really doesn't even know what Down syndrome means...he just sees Lily as his little sister. He plays with her and adores her and talks to her and asks her questions and laughs with her and treats her just like anybody else.

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Simply put: he's one of her biggest fans. When Lily was first born, one of the things Sam and I talked about was what a blessing her life was going to be to our kids...because they are naturally going to become more compassionate, more willing to embrace people who aren't just like them, and I believe they will become stronger advocates for others who face challenges in life.

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Weeks ago, I mentioned how the topic of aborting a baby because of a Down syndrome diagnosis was being discussed on another online forum for parents. Of those who said they would abort, again and again the issue of siblings was raised. I read so many comments from moms who said they "wouldn't want to burden their other children with a child with Down syndrome."

What a fallacy, and what a loss.

In their desire to protect their children from perceived imperfection and hardship, they are in fact robbing them of an incredible life lesson in compassion and understanding and acceptance.

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I thought it to be true before I had Lily, but now I am living it every day and knowing it to be so...our biggest fears are sometimes our greatest blessings. Those things we thought impossible or burdensome or difficult are often indeed the keys to true joy and fulfillment.

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I have said it so many times here, but it's more true than ever: next to salvation, Lily is my greatest gift.


And now, without further ado, the winner of the Scentsy Room Spray is....



Brooke said..
I have to say I kinda agree.. although I leave my speakers on mute at work, so i dont have that issue, but at home i do feel slightly annoyed when I come across an auto play, but half the time i do enjoy the music.. so its a hit & miss. I agree with the point that if you are going to have auto play to put it in an easy to find location to turn off. I don't think it will make readers NOT come to your page. It will just remind them that the option is there to turn it off the next time the come.

Thank you for commenting, Brooke- please email me with your address and tell me which fragrance you prefer, so I can order that right away for you!

Before I end this I just want to say...I seriously wish every post got as many comments as yesterday's - blogs are sort of like a conversation, and sometimes it feels like it's me doing all the talking here:) I absolutely love getting feedback from readers and hearing about their likes and dislikes and shared experiences. It's what makes blogging fun! So join the conversation and leave a comment or two!




And if you feel like seeing more music-less Rice family photos, come visit HERE today.

Happy Thursday:)

Wednesday, August 24, 2011

Jack and Lily's Giveaway Wednesday

It's Wednesday, and that can only mean one thing...




Jack and Lily's Giveaway Wednesday!!

These two little charmers couldn't wait to tell you what they were giving away last night. They begged me yesterday to give everyone a sneak peak of these fabulous goodies...





I cannot adequately tell you how incredible these room sprays from Scentsy are. I so wish someone would invent a way for smells to ooze from your computer screen, so you could know what I'm talking about. These fragrances are not only heavenly and addicting- they last FOREVER.

True story: last night I sprayed a puff of my Skinny Dippin' room spray in my bathroom. not because we do that kind of thing around here. But because it produces the most amazing fragrance of fresh green apples perfectly harmonized with refreshing melons and juicy pears.

This morning when I woke up and entered my bathroom, I immediately inhaled that intoxicating aroma...I looked around to see if my husband had turned our Scentsy warmer on...and realized it was the scent still lingering in the air from the night before!! When Sam came home from work I told him about that divine experience (have I mentioned how into smells I am? yes. I have.) and he said the same thing happened to him! He looked around for the Scentsy warmer, and wondered how our bathroom could smell so good without one turned on! I seriously cannot believe one little puff lasted over 9 hours. But it did! *note to self: stock up on Scentsy room sprays for kids' rooms, closets, church bathrooms, and laundry room. Stat.



SO here's the deal:

Jack and Lily are giving away one fabulous Scentsy Room Spray, winner's choice of fragrance, to one random commenter on this post.

I want you to answer a question for me, but first a little background info..

A week ago I was on a pretty big site, reading about ways to help my blog. I am always up for improving things to make it easier for readers to navigate the blog, etc. SO one of the top five recommendations was to KILL THE MUSIC on your blog. The author said the following (and admittedly my face got a little red reading it..I was truly embarrassed!)

This is absolutely, positively the most obvious of all the no-nos.  I am actually offended when I go to read a blog and music starts playing. Offended?, you ask? YES!  I think it’s rude that bloggers will push their music selection onto an unsuspecting reader. How do you know I’m not already listening to my own playlist as I browse through my favorite blogs, and you’re implying that YOUR song selection is better than mine? Or what if it’s late at night, I’ve got my laptop in my bed, and my husband is asleep next to me? He does NOT want to wake up to your (horrible) song selection which starts blasting before I get a chance to turn it off. I know what you’re thinking, that YOU have great taste in music and just can’t help yourself but to share your wealth of super cool taste with the rest of the blogosphere. Well, I say, Great!, then by all means, write a post, or even a weekly series, about music that I (as a reader) absolutely MUST listen to! I might even go listen to it! But it will be on my terms, and it won’t wake my poor tired husband.

OUCH.

I wrote to the author and told her that I actually get positive comments about the music on Lily's blog quite often...here was her response:

I used to have my playlist on auto-play, and like you, was very flattered by the compliments I got from visitors who enjoyed it. But, after hearing the same critique of auto-play music from sources I trusted and admired, I came to realize that the number of visitors I was losing was probably a lot greater than the number of people who enjoyed the music. I have to admit, it was hard for me to turn off the auto-play. I was afraid that I'd lose those people who said that they visited my blog specifically for the great music. I'm glad to say that the music fans haven't gone away. They know that they can still visit and simply hit the "play" button. That's my two-cents as someone who's been in the same position.

My advice (unsolicited, of course), is that if you decide to keep the auto-play on your blog, just make sure the control panel is in an easy to find location, so it can be disabled, if the reader chooses to enjoy your content without a music accompaniment.



SO, dear friends- I really must know. Do you agree with this sentiment? I promise I won't get my feelings hurt if you answer honestly. And I realize probably not every reader is going to feel the same way. But I really don't want to be scaring readers off because of the music here...so tell me what you think. If it were up to YOU...would you prefer Lily's music set to auto-play, or set to manual play, or gone all together.

Again- every comment is appreciated, and you don't have to say you like the music here to be entered to win:) You just have to say what you think!



Winner will be drawn at midnight and announced tomorrow.

Happy Wednesday!
**EDITED TO ADD: the day has hardly even started and the people have spoken! I expect many more comments about this, because clearly the author of that article knew what she was talking about. For those of you who like music on auto play (helloooooo, Cathy!) enjoy it while it lasts:) SO glad I asked!

Tuesday, August 23, 2011

reader shout-out and a sneak peek

I just realized I never did my reader shout-out last week as promised. I hate breaking promises. Forgive me, and chalk it up to plain ole' forgetfulness lots of pregnancies burning lots of memory cells.

Anyhoot, here are some of my favorite comments from the last few weeks...

Patti - I'm a long-time follower of your blog, and fellow mommy of a genetically enhanced daughter. I need your help. I have a new book available for Kindle on Amazon. I'll be donating 10% of ALL profit directly to Reece's Rainbow. I need help spreading the word, as well as people to read the book and leave (hopefully) positive reviews for it. It's called "Disaster Flambé" by Leigh Schilling Edwards.
Can you help me spread the word?

Thank you SO much in advance!!



Click here to see Disaster Flambe

Hugs!



Leigh

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

It kills me, this selfish world we live in. When people terminate, its a selfish motivation... they don't want their life to be harder, even though this is often placed on the child that they don't want their child's life to be hard. Not one of my fears of having Fiona was for the quality of her life, it was the quality of mine. If there is one thing you can take away from anyone with Down syndrome is that they live life to the fullest, they don't dwell on what they can't do, but rather what they can. And they are always smiling- a smile that is contagious and bright. Her life is amazing, mine is a little more difficult, but without a doubt or hesitation, my life is better with my daughter who happens to have Down syndrome.
shannon
http://shannonblaeske.blogspot.com/



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



I keep coming back and contemplating whether or not to leave a comment and what that comment should say and I think I will leave it at this.
We were in our Feb 10' birth board on babycenter together and I couldn't fathom what you were going through but you were always in my prayers. Thursday we found out that we have a 1:32 chance that baby #4 has down syndrome and as nerve wracking as that is I also find myself feeling a calm about it all. Between you and our strong feelings toward Reeces Rainbow and having talked daily about adopting since your original cry for Olga in December. We feel a weird state of calm and acceptance that in many ways we feel indebted to you for. We have declined the amnio and will be monitered closely via ultrasound but I just wanted to tell you that this post came at the perfect time for us, even though we were never questioning whether we would enjoy Holland or not.
colleen



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


Lily puts a smile on my face everyday- thank God for her! I know your blog changes people's hearts everyday, so keep doing what you are doing Patti. :)

The thing is, when you open your heart to having children, there are never any guarantees about how easy or heard the journey will be, no matter what the genetic tests say. We have two children that struggle (one with health issues, the other with reading social cues), and while it breaks our hearts at times to go through these things with them, we learn so much, and they are absolute treasures to us, just like our "healthy" kids. We just have to trust God that he, in his infinite wisdom, knows exactly what he is doing. Living in God's perfect will is the best thing any of us can do.

angie

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like always you write fabulous and you can touch my feeling very easily.this word are always, day by day in my mind.soha


fyi Soha is from Iran, and she writes beautifully about her life with her baby girl who shares Lily's extra chromsome here:
http://indigoskyofapril.blogspot.com/

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Don't forget tomorrow is Jack and Lily's Giveaway Wednesday, where all you have to do is leave a comment to be entered to win.

Here's a sneak peek:
 See you tomorrow!!

Monday, August 22, 2011

delays and victories

Dearest Lily,

Delays.

That's a word I've come to know as your mama, and a term any parent of a child with special needs becomes familiar with not too far into their journey. We expect them, and the longer we're in this thing, we realize that they are going to crop up in one area of development or another. And although it's never an easy thing to watch your child struggle, I think the more I accept that your diagnosis can at times mean significant delays, the easier it is to come to terms with how to address those issues.

There's a fine line between expecting-not-accepting... and also having a healthy view of reality. Because while it is true in so many instances that children with Down syndrome are "more alike than different", reality is that your bonus chromosome will in fact set you a bit apart in some areas of development. I don't think it's fair or realistic to expect you to be on track with your peers in every area; I'm just setting myself up for disappointment if I hold an impossible standard in my effort to prove just how "alike" you are.

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So delays are to be expected, and one of the things I've noticed is that it really is impossible to determine where you're going to be developmentally tomorrow, based on what I'm seeing now. Because just when I'm certain that a milestone is light years down the road- bam!- you're proving me wrong. Last week we were working on a four point crawl with you, while "standing" was not even on the horizon in our minds.  And suddenly there you were: pushing yourself up in the middle of the room, proudly planting your feet on the ground with a big grin on your face, as if to say: don't underestimate me, Mama. I've got this covered. 

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Which brings me to this latest delayed developmental stage, which honestly, Lily, is one I wouldn't have minded missing altogether. It's something every single one of your brothers and sisters have gone through, and with each one of them it only lasted a month or two: separation anxiety. I've never left my children with babysitters very often in the first year, because of breast-feeding, and also because I honestly just love having my babies with me! I admit it, Lily: I'm addicted to my babies.

Having said that, your siblings have all gone in our church nursery somewhere around three months of age... and with the amount of church we go to, that is a significant amount of time spent away from me. But sooner or later, they have all "hit a wall" around 8 months to a year, when they decided nursery was not the place to be. It was never fun to drop off a crying baby in the nursery, knowing that the first few minutes would be spent in a fit of tears. But realizing they would eventually calm down was always my reassurance to leave them there. Sometimes it took two or three services of letting them "cry it out" and sometimes it took a bit more, but without fail each of them passed through that phase unscathed. They soon learned that Mommy would be back for them, and that playing with the other infants and toys was a better way to pass the time than crying.

Enter Queen Lily.

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...who decided 10 months after the age her brothers and sisters typically went through separation anxiety, that she was going to try her hand at it.

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Oh Lily- those tears and that face just broke my heart. I tried service after service to let you cry it out...but I never saw a lull in the storm. In fact..at times it got a little ugly...

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And each time I picked you up at some point during the service, your tiny frame shuttering with sobs and your tear-streaked face red and swollen, I knew instinctively- this wasn't working.


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Because all of your siblings have been able to self-sooth at some point. Each one of them seemed to have had a built-in coping mechanism that enabled them to slowly work themselves out of a crying jag, and helped them trust that they were safe without me. But for some reason this ability to cope seemed out of your grasp- not only did we not see progress with each service, you seemed to get worse each time I gingerly handed you over to the nursery worker. In fact, I suspect some of those workers might have cringed a bit when they saw us headed their way. I didn't blame them....

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One day I asked your therapist about my theory. I've never been a parent that looks to make allowances for my children...I've always sort of balked at the idea that children are naughty because they missed a nap, or surly because they had too much sugar that day. Granted, there are contributing factors at times, to babies and children and their moods, but for the most part I don't like to make excuses for behavior. So it was with hesitance that I asked Karen about this issue of separation anxiety. Because it seemed to me that you just didn't have the coping skills that your siblings had, and that leaving you to cry was not teaching you to trust your environment or caregivers, but instead was causing the anxiety. For whatever reason, what had worked with your siblings was not working with you, and you started withdrawing whenever we got to church- instead of being your happy, playful self you were clingy and sad, and you weren't even content to go to your daddy or Mackenzie when we were there.

After talking to Karen, who reassured me that you would eventually grow out of this stage, I decided that I needed a different strategy with you than I'd had with your siblings. At first we just boycotted nursery altogether. I wanted church to be a place you felt comfortable going to, a secure environment that you didn't dread. You've always stayed so quiet on my lap, so you weren't the distraction that a typical 19 month old toddler would be. Slowly we started giving you a few minutes in the nursery...if you reached the point where you were inconsolable, the nursery worker would call me, and we would try again the next service.

Each service you seemed to last a little bit longer, until today...your sister-in-law, Naomi, sent me this picture from the nursery....

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Victory!!!

Naomi said you cried the first fifteen minutes, and then she put you on the rocking horse. You sat and rocked and smiled, and then you got down off of it...only to turn around and climb back on again. You were so impressed with yourself, you spent most of the morning climbing on and off the horse, until the end of the church service. And when I came to pick you up, guess what?! You didn't even cry! You sat calmly on the floor playing with your toys and smiling at me, as if to say: don't underestimate me, Mama. I've got this covered. 


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So tonight, sweet Lily, as I tuck your tiny sleeping body safely into bed, and brush back the delicate wisps of golden softness from your eyes, I am thanking God for those delays. Because while they stretch and challenge me as a mama, they also cause me to dig deep within the wells of trust and instinct and faith, making the little victories of life that much sweeter.


Loving you always,

Mama oxox