Tuesday, January 29, 2013

party pics and a guest post

Before I post Lily's birthday party photos, I wanted to let you know about another place I'm blogging today. Amy Julia Becker, author of A Good and Perfect Gift, asked me to contribute to a series she is doing on the new prenatal test for Down syndrome. I was honored to be included, and you can read my post on her blog HERE.

Last spring I ran my own series about this test. Many moms contributed photos and essays for that series, expressing their concerns about the test and its possible effects on our society. I still share those concerns, however the post I wrote for Amy addresses the flip side of things: how I feel this test can benefit families and perhaps help them to prepare for the birth of a child with "something extra". I hope you'll take time to go read my thoughts, and share your ideas in the comment section there. Amy Julia has a new eBook out called What Every Woman Needs to Know about Prenatal Testing 




You can find her book on Amazon, or by clicking the blue link above.


And now, for our girl's third birthday....


Simple. That was the theme here, as you will quickly realize :)


 Three homemade cakes made from a box and three trick candles that always make a crowd of little kids squeal. That's how we rolled this year.





 Lily was delighted. And that's all that mattered :)




 After opening a pile of sweet gifts, we sang to the birthday girl....











...and ate cake.


Lily and Caleb




 And the next day the celebration continued...

dollie and accessories sent from the Kopp cousins

sweatsuit from big sissy Kenzie




Happy three years to our girl !

Wednesday, January 23, 2013

Russian Orphans...what you CAN do

At the beginning of this month, as many of you know, Russian lawmakers passed a bill that bans Americans from adopting their children. In doing so, they sealed the fate of orphans with Down syndrome and other special needs, who will now spend the rest of their lives in mental institutions.

And yes, my blood is boiling as I type those words.


Children with names...Artem, Olga, Albina, Nanette, and the list goes on. Families who were mid-process in their adoptions - who had perhaps traveled once already, but were waiting on a court date- are now walking a tightrope between faith and fear, praying for a miracle. Unless Russia lifts the ban, or allows an amendment for children with special needs, these children will not be coming home.

Both of those prayers are ones I'm lifting daily, and I'm asking you to do the same. The ultimate, best solution is for one of these to take place.

But in the mean time, there is a way you can help, and I'm featuring Amy Livingston here today to tell you how you can do so. You may remember Amy, and her amazing story from a year and a half ago. That post was entitled Transparency and Awe, and I still love going back to read about the miracle God did for little Pauline, now named Lina.



Please take a few moments to read Amy's words...I pray you are able to help.

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

Everyone has been in a frenzy since Putin signed the ban on US adoptions a few weeks ago, wondering how we will ever reach the sweet children who are suffering due to this new law.  While we wait for politicians and foreign governments to hash things out, there is still a way we can reach some of these children... children who are in the most need.  Children who are locked away in psycho-neurological institutions... mental institutions.  Children who have no hope of escaping this way of life unless they are adopted.  And the only families interested and able to adopt these children with special needs were here in the US. Our Lina had been living in one of these institutions for over a year when we got to her, and part of my heart will always remain there in Russia with the ones we left behind. 

There is an absolutely amazing volunteer organization, Russian Orphan Opportunity Fund, based here in the states that works in Lina's former institution, Belskoye-Ustye.





ROOF first entered the institution in 2000 and found it to be an absolute nightmare.  Lack of running water, holes in the ground for toilets, "bath houses" so scary that the volunteers opted to bathe down in the river instead... odors so strong it brought tears to their eyes when they entered the building.  When we arrived at Belskoye-Ustye in November 2011, we found nothing of the sort.  The facility was very clean- there were no odors whatsoever, the children passing by in the halls appeared happy and nourished, and Lina was even eating an apple two of the three days we came to visit on our first trip. We found lovely children's furnishings both in Lina's groupa as well as the psychologist's office where we spent our time with Lina.  

ROOF began running a summer camp during the month of July, and this past year they have been able to increase the frequency of sending volunteers to work with the children.  This is the only exposure to educational opportunities these children get.  ROOF is now working on new programs for the older children ready to age out in hopes of saving them from transfer to an adult mental institution which is a death sentence.  ROOF has already spared a few from this fate. They have also been able to expand to a few places in Moscow.

So how do WE help?  There is a second psycho-neurological institution in Pskov, one that is still the hell hole that Belskoye-Ustye used to be.  I urge you to read Tesney's account of visiting this place when they were in the process of adopting Kirill.  He was the first child adopted from this institution, and I fear he may be the last if this ban holds firm.  There are several children listed on Reece's Rainbow who are currently fighting for their life behind these walls.



If ROOF can reach their goal of raising their monthly funding base (made up of loads of small donors who give $25/month) to total $5000, they promised to find a way to expand to this second institution.  This institution has haunted my dreams these past few nights.... Mike and I signed up to donate our $25/month back when we first learned of ROOF, before we had even traveled to meet Lina but learned she was living at BU.  We needed to help her anyway we could before we were able to get to her ourselves, and our donations continue to serve the ones left behind.  You can sign up HERE to either donate monthly or give a one time donation.  They currently have $1,473 coming in each month through recurring donations, and in order to reach their $5,000 goal they need 141 more people to donate just $25 monthly.  I beg you to please consider helping these children who have no other hope.  If the Russian government closes these doors to US adoptions, we need to be able to help the children behind those doors.  This law does not affect ROOF's ability to work there.  These children have committed no crime and should not have to be punished for being born with a disability. Please. Help.

Monday, January 21, 2013

happy birthday nella

Lily is helping her friend Nella celebrate her third birthday...

Photobucket

Please go HERE to see how you can help celebrate too. (you might see a familiar little face there !)

Saturday, January 19, 2013

notes from home


If you follow Lily and love her, she has a host of older siblings you might enjoy as well on our family blog, Notes From Home.

However...you might see us let our hair down a little more over there. Sarcasm and strangeness are two vital elements of living on The Rice Ranch.

You've been warned !

Friday, January 18, 2013

catch-up and a winner

Lily has speech therapy at our house in twenty minutes. She's slurping cereal in her high chair, still in her jammies, and I have no make up on...and my hair looks like something out of a horror movie.

And so what am I doing ? Uploading pictures.. go figure.

Just wanted to make sure I posted some Christmas photos before Valentines Day, so forgive the theme here...






Thank you, Mitch and Ginny, for Lily's picnic set- she LOOOOVES it !!


Okay, clearly we need to work on how to actually form a bubble.


Favorite past time- taking pics of herself on her "iPhone" and uploading them to Instagram. (thank you Grammi for the fake phone ;))



A little video just for fun...



The winner of the Mobi wrap is...

Emily Cornell said...
Happy birthday Lily!!! 

Please email me with your address so we can mail your new Moby wrap to you ~ thank you again to Lacey for donating it !!

Thursday, January 17, 2013

influence

Dear Readers,

I've had something on my heart for a week, and I've been trying to find the words to put it into a blogpost.

I've been contemplating ending Lily's blog lately. Not because I don't love connecting with people, but because I've wondered how much good it's doing. This blog was started as a way to process the emotions I felt during my pregnancy with Lily, and in the months following her diagnosis and birth. It was a roller coaster ride for sure, and writing has always been a good tool for me to "get through" things. I shared my blog with friends and family, so that I could let people know what we were going through ~ that way they could tune in if they wanted, but if it was too much info, or whatever, they could tune out :) Along the way Lily's story drew many new readers and friends from around the world...which was not my intention; but it was a wonderful feeling to know she was impacting others' lives.

Now here we are three years later, and I have to say I am not on a roller coaster anymore, as far as Down syndrome goes. (other areas, perhaps, but not Down syndrome ;))

So I've been wondering what the purpose of Lily's blog is, because as a busy mom, I really do want to use my time wisely, and there are only so many hours in a day, you know? 

Last week I received several emails, and a few requests to guest post on some blogs I admire...and I met a host of lovely "Lily followers" at our Bible conference...and I guess you could say things started to fall into place for me.

Because it hit me- where we are at right now on our journey with special needs is important too. 

It's important for people to see that a life lived with Down syndrome - or any other "unexpected" diagnosis - is good. Blogging and writing about those initial feelings of confusion or grief or what-have-you, has helped many mamas to see that what they're feeling is normal and doesn't diminish their love for their baby. It's valid.

But blogging about this side of things can be just as important too. Because as three years has come and gone, Down syndrome has taken a back seat in many ways, and that's okay. Sure, there are therapies and decisions about schooling, and potty training, and other challenges we haven't faced with other kids. But for the most part we have adjusted to this new normal with Lily, and I don't wake up with Down syndrome on my brain every day. In fact, most days I just plain forget about it.

So I wanted to share one of the emails I received, in hopes of inspiring YOU. Because each one of us has a sphere of influence. Nobody lives in a vacuum. And whether you realize it or not, your life is influencing someone, somewhere, for good or bad. 

My husband and I attended our fellowship's semi-annual Bible conference last week, and after a week of awesome preaching we both determined in our hearts that this year, more than ever, we were going to determine to influence others' lives for God. Tell more people about Jesus, pray for people more, love people more, show others how much we care, intentionally look for ways to be a Godly influence in this generation. Our days are numbered, you know ? If this were the last year of your life, how would you spend it ? That's how I want to live. I don't want to wrapped up in my own little world, I want to be an instrument in the hands of God, and I want to make a difference in people's lives. Not for "my glory", but for the glory of God.

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



Dear Patti,

I’ve been reading your blog for a few months now and have thought about writing many times…but simply enjoyed my read, allowed my life to be touched by your words and then would continue with my day.  Today however, my soul simply opened up and I felt – “now is the time to share.”

This morning I was watching Good Morning America (my pre-work ritual) and there was a story about Hillary Clinton returning to work.  They showed images of her staff welcoming her back and about the number of countries she visited while Secretary of State.  As I watched, I thought – what a remarkable life she must live (politics aside).  She’s only one person, yet she’s touched the lives of so many people in so many countries in so many ways.  I then wondered what it must feel like to be that important.  It was a fleeting thought and then I went back to my day.

On my lunch break, I read your latest entry and one line in particular stood out to me – “I am so humbled that God is using Lily’s blog to touch other’s lives – honored and blessed beyond belief, that God gave us the gift of Lily so that we could minister to others and meet so many beautiful souls along the way.”  I instantly drew a parallel between your life and my earlier reflection on what it must be like to serve as the Secretary of State.  I wondered if you truly knew the power of your words, reach and works.  I wondered if in the moment that you wrote this sentence, you could feel the gravity and truth of this simple statement.

I suspect that I am one of countless others who get a glimpse of how God is working through you to minister to others.  It is truly remarkable.  When our son received a pre-natal diagnosis of Down Syndrome and the fears of the unknown, the sadness over what I imagined this would mean, and the disconnect …the disappointment I felt in my relationship with God became overwhelming – I found your blog.  Perhaps it’s more accurate to say that God nudged me in the direction of your blog.

Since reading A Perfect Lily, I’ve found solace, comfort, answers, hope, laughter, advice and direction wrapped up in the words that you so beautifully lay to each page or in each image of your absolutely lovely family.  In my moments of sadness and fear, when I couldn’t find the words to have a conversation with God about how I was feeling, a post of yours would inspire a prayer – whether it was praying for your family as you transitioned to a new home or praying for the life of baby #11.  Before I’d know it, the silence between God and me was broken, and our relationship was on the road to healing.

Threaded in each message, you’ve paved the way for God to speak to me and for me to respond…whether it’s an alleviation of fears, a lesson about family, a reminder of just how blessed and fortunate we are – even in the face of all of life’s challenges, or to show me how to give and help others (of the little we have to give to Reese’s Rainbow, I realized a little something is better than a whole lot of nothing), you’ve ministered to me and changed my life as a result.  For this, I am thankful. 

So, I wrote all of this to simply share that – yes, your reach is far and wide (our little family is tucked away in Massachusetts).  And, I am happy to share that the outpouring of His love is felt by me through your words. And, simply or not so simply put, I’ve been incredibly blessed as a result.  Thank you Lily.  Thank you Patti.

Erica
 
*meet Erica's darling baby boy James...
 
 

 
 
***************************
 
 
I would love to fill this space with other stories and pictures of families with loved ones with Down syndrome. I'd love to hear your stories of how God is using the "unexpected" in your life to influence others. If you have a story to share, please email me and include some photos of your loved one with Down syndrome. In the upcoming weeks I'm looking forward to hearing and sharing your stories of influence.
 
Much love,
 
Patti oxox

Wednesday, January 16, 2013

Happy Birthday, Lilybird

Dearest Lily,

Three years ago today God gave us a gift.

 We didn't recognize it at first, because it didn't arrive in the typical fashion...there wasn't a note attached that told us what to expect, and it took us a little while to understand what we had been given.


Three years ago that wonderful gift came to us in the form of a little girl with stars in her almond-shaped eyes... within just a few moments she had all of us wrapped around her bent little pinkie.


 


She weighed all of five and a half pounds and was seventeen inches long, and we named her Lily Anne. She grew into a beautiful toddler who charmed the socks off everyone she met. She taught us all how to slow down and enjoy this journey called life... and every little blessing tucked into it.





She opened our eyes to children across the ocean who share her extra chromosome, she made us see these treasures for who they are. She inspired people to pray for and give to and help rescue those hidden treasures, and because of that, so many orphans have found their families today.







Just a few months after she was born, a pastor prayed for her and spoke words over her that seemed unbelievable to us at the time. He said God was going to use her life to impact thousands of people, and that only eternity would show the full measure of how she would touch hearts.

And in just three short years, Lily Anne, you've made those words come true.



Three years ago, God gave us the gift of joy....when He gave us you.




Happy birthday, dearest Lily.


All my love,

Mama oxox



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


To celebrate Lily's birthday, we are giving away a brand new Moby Wrap in the color moss...


The Moby Wrap is designed to use your entire back, as well as your shoulders, to carry the weight of your baby. Unlike other carriers, which have narrow straps or go across one shoulder, the Moby Wrap is a wide piece of durable fabric that is wrapped over both shoulders (the Moby Wrap is 5.5 meters in length). It is amazingly comfortable and easy to wear. There are no buckles, snaps or other fasteners (that may break or bend). It is easy to adjust the fit of your Moby Wrap by varying how tightly you wrap yourself and baby. Moby Wraps are one size which means all caregivers can easily and comfortably share one wrap. 


This fabulous Moby Wrap was donated by Lily's adorable buddy Ari, and his beautiful mama, Lacey...

*you can see more photos of this handsome little guy by following his mama on Instagram at laceyhochman !


Just leave a comment on this post to be entered to win...winner will be drawn and announced on Friday.


Thank you to each and every reader who has followed Lily's story ~ we are so very grateful for the many wonderful friends we've made here because of her life. oxox

Happy Happy Happy Day !!

Sunday, January 13, 2013

week in photos

We are home after a glorious week in Prescott, Arizona, where Sam and Lily and I attended our fellowship's semi-annual Bible conference. I flew out early Monday morning with my son Josiah and his wife Monique (missed the parenting seminar we were supposed to do in San Diego, thanks to nasty pneumonia) and my sister picked us up at the Phoenix airport. We spent a few wonderful hours catching up with her and my niece Grace, pictured below, as well as my mom and dad and cousin Glenn.

Seeing Lily with her cousin just melted my heart- my sister and I have always remained close, despite living in different states, and I am so thankful that our girls just act like they've always known each other.



Sam came to pick us up, and we headed up to beautiful, chilly Prescott. Lily was such a trooper- she just slept on the plane, and charmed everyone's socks off at the airport, then slept on the drive up to conference. She went with the flow the entire week, even though it was a completely different schedule than she's used to. Team Down syndrome scores another point-  don't think I've ever had such an easy time taking an almost-three-year-old on a week long trip.

And being the center of attention all week didn't hurt any....


diva in the resort, yo !



I have no idea why Lily hates baths at home now, but she does. She was fine at our old house, but once we moved, bath time became a total source of frustration. Her love for her "bathy" was renewed last week, though. Wish I could have transported this tub and its magical powers back to Corvallis....





We had a spectacular room with a lovely view of Prescott from the fifth floor of our hotel. Lily slept like a little princess nestled between us each night, and woke up in the best mood each morning. I think God knew I needed a week of refreshing and helped my little birdie to cooperate with our early morning routine each day. And maybe watching Sesame Street helped a bit as well...little sister was mesmerized by the tv, as we don't have one at home. It was cute to see her wake up and point to the tv and grin each morning, and then dance on the bed to songs I remember hearing as a child. (How does Big Bird still sound EXACTLY the same after all these years?? Doesn't that guy ever age?!?)


The last day of conference, as we were packing our room up, Lily found a pile of Sams' t-shirts and er...chonies...and decided to try them on. ALL of them. She layered chonies and t-shirts- four of them- over herself, then proudly surveyed the results in the mirror...


Mama took a twenty week baby bump pic....


...and the next day we headed home. We missed our flight (flying stand-by as always, because we have relatives who work for the airlines) and stopped at a Starbucks to pass the time til the next one. Lily didn't mind at all - I think she consumed half my breakfast and would have done the same with my Tazo tea if I let her. Her food jag (eating only white foods foreeeever) appears to have given way to a profound love for WHATEVER we are eating. For months all she would eat was cheerios, bagels, chips, yogurt and pizza....last week she ate paninis, salad (?!), spicy chinese food and steak gorgonzola from Olive Garden.

And a bacon egg and cheese sandwich from Starbucks...




Little Miss was a champ on the plane ride home as well. She grinned at the little girl in front of us, waved to the flight attendants, perused the safety brochure carefully before the flight, and slept most of the trip home.

I took what is now my favorite picture of her ever...


...am I the only one who melts at that smile ? Seriously, she slays me !!

All of the kids were sooooo happy to have their baby sissy back home. Before we left, Jack was pathetically moaning to me: "Mama, it is SO not fair !! We don't even get to keep Lily for the week, and she's the CUTEST one in the family !!!"


reunited :)

I'm so happy to be home after a wonderful week. I feel so refreshed and ready for the new year. I was overwhelmed by the amount of Lily fans who came up to us at conference - Carol and Val and Jody and the Aulson girls and Hanna and Andrea (I know I'm forgetting some, it's late here!). Thank you to all you for loving my girl so much, and thank you as well for letting me know how much you're praying for Baby K....


...please continue to do so, as we still need a miracle regarding his situation.

And now, it's time for a little shut-eye...


...good night !!!