Wednesday, November 27, 2013

Thankful For YOU

It's Thanksgiving Eve… and I'm about to post my favorite ever kind of post on A Perfect Lily.

If you could have seen me when these pictures started flooding in, it looked something like this:

Oh my word…look how sweet she is… (giant lump in throat)

Ohhhh Abbi- come look at this little boy ! (tears welling up in eyes)

OOOOHHHH, this couple who is dating !!!! (chest heaving, gulping back tears, choking on my snot, basically I'm a giant puddle sitting at the computer.)



And the emails that went with some of them…



... little Brennan who wasn't diagnosed with Down syndrome until a week after his first birthday - can you imagine ? She had a whole year to just totally enjoy him for who he is- a baby - before any label came. And she followed Lily before she knew he shared her extra chromosome. When I first got Brennan's photo I thought his aunt misunderstood that I was looking for pictures of kids with Ds, and just sent me a photo of her "typical" nephew. Then I received another photo of Brennan from his mom, and emailed her…and I got "the rest of the story." Here's a little piece of her email..


Was there really a time that I didn't know that he had this?  It is crazy to think about that.  I am so grateful for that first year of ignorance.  It gave us a chance to get to know Brennan for the sweet little boy he is, without multiple dr appts, therapies, etc.  I have always been a pessimistic person, with little to no patience.  I really believe that he chose us to teach me how to slow down and enjoy life.  We are so glad that he is a part of our family.  The future scares the heck out of me, but then again, it scares me with Ellie too, my 3yr old.  Who knows what will come of any of our kids.  The one thing that I know for sure, is that Brennan, and our entire family, has more love and support than I ever thought possible.  And, the ds community is incredible.  Your sweet Lily has been putting smiles on my face since before I even had an idea that you & I had this in common.  So thank you, so much.  You might not realize, but you made me feel "normal" at a time when I felt like I couldn't quite get comfortable.

xo,
Alyssa





…or Linda, who adopted a baby with Down syndrome … she was 21, living at home with her parents, and engaged to be married. She fell in love with Stacey, who was 7 months old and staying with an elderly woman in a retirement home..waiting to be adopted by someone. I won't spoil the rest of the story (she's guest blogging next week), but you'll see Stacey and her boyfriend in the video below. She's the one beaming a million watt smile because she's so in love.





…and then there's Emily, who sent me this :

Hi Patti! This is a picture of my sweet baby girl Olivia Claire. She is 6 weeks old today. I'm so glad you are doing this post and that she can be a part of it. I would like to say thank you for all the encouragement you've provided in the last several months. I've been reading your blog since we received our prenatal diagnosis at 26 weeks pregnant. At 26 years old, Down syndrome was nowhere on my radar. I foolishly thought something like that wouldn't happen to me.
The biggest struggle I have had through all this is the unknown. I've never really known anyone personally who has Down syndrome so the diagnosis as very scary for me. I immediately got online and started looking for blogs written by people who were going through what I would be going through eventually. Your blog is one of the ones I read regularly. It has helped to take some of the fear away and realize that our previous normal will just become a new normal. My baby girl is beautiful and an absolute joy. I have a 2 year old son but wanted him to have a baby sister. That wish came true, and he loves her so much. I still worry about the future, but these small glimpses into the lives of families like yours has been a true inspiration. Your posts have been exactly what I needed to help me realize the "truth" about Down syndrome, and for that,
I say many thanks!!




Emily, thank YOU for sharing  your story with me. It means more than words can say.





A few words about the video- my son Tyler helped me with it, and I am so thankful he did. There are close to a hundred (maybe more?) photos you all sent in, and each one had to be downloaded, uploaded to iMovie, fit to scale, and have a name attached…Tyler helped with at least half of that process, so if you ever meet him, give him a gigantic hug, okay ? Or punch him if he spelled your child's name wrong :):) We finalized the slideshow last night, went to upload it, and realized it would take THREE HOURS to do so. I got up at 6:45 this morning just praying it didn't fail to upload…and it didn't :)

Just before I started this post I checked my gmail, and there was this :



Hi Patti,

I know I'm late with this picture of my daughter Emily for your Thanksgiving slideshow on your blog and that's ok, I just wanted to send it to you anyway.  A friend brought me to your instagram page and from there your blog page after Emily was born.  Thank you for sharing everything the way that you do.  My daughter Emily is almost 16 months old now and yes it was a big shock when within 5 mins of her birth I knew she had Down Syndrome, my husband was very upset so I had to make the phone calls to our parents to let them know the wonderful news of her arrival.  

Thank you again for your wonderful blog and instagram posts, I love seeing all the pictures of your family and family life.

Happy Thanksgiving.

From, Michelle (mrsdamo on insta)
Ireland.


Michelle, if our video didn't take three hours to upload, I would totally add sweet little Emily in this morning. Instead I'll post her picture here- because she is just too beautiful not to share…






So it's 7:26 a.m. now in Oregon, and I have a full day of Thanksgiving prep to attend to. We will have 30 wonderful people here tomorrow - I just wish we could have all of you too :) Because I am so thankful for the friendships I've made here, and so grateful to all of you for sharing your loved ones with us this Thanksgiving. You all are the best.

And now, without further ado….

Our annual Thankful For You slideshow.

Grab your kleenex….




Monday, November 25, 2013

why do I blog ?

Sometimes I get a little glimpse into how Lily's life is changing hearts, and it just grips me. I mean totally, completely gets my heart…and tonight was one of those nights.

I'm putting together the slideshow for Thanksgiving, and the photos that are pouring in just have me in tears. Because I'm super sappy like that. It's just that these faces- and the love that is behind them - represent so much. I don't just look at a photo someone sends me and see a child or adult…I see a family behind the person…I imagine how much love is going on right there, and what kind of journey each parent or sibling or aunt or uncle went through before that photo. It's hard to put into words- but each photo to me is priceless, because I feel like I'm on the journey with you when I see your photos.

I think more than anything else, the reason I love blogging is the connection it brings me to other people who have gone through or are going through what I have, in regards to Down syndrome. I am so thankful - SO THANKFUL - for the friends I've made online since Lily was born. Jenny, Deanna, Elissa, Elizabeth, Susanna, Charrissa, Nicole, Cara….I could fill this post with over a hundred names of friends I've made here in the last four years.

YOU are the reason I blog. I love reading your comments, hearing your stories, getting your wisdom and feedback, I love getting a little glimpse into your lives and the lives of your loved ones with special needs. I love growing with you and rallying with you and crying with you and learning with you…I am so honored to be part of this community.

I received several emails tonight along with photos that had me in a puddle of tears. It's late, and I only have time to share one for now, but in the days ahead I want to post about the others. This isn't to pat myself on the back, but rather to thank God for using Lily's life to influence and encourage others. I just get to be the vessel for that, and I am so blessed to play that part.


So very blessed.


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

Hi  Patti,

Here is a photo of Mitch for the thanksgiving post. I am so glad that he could be included in this. 

We are so glad we have him, the delight when he learns something new and his laugh at everything around him makes him so fun to be around. We wouldn't change him for the world. The world that has been opened up around us because of him is something I could never imagine, from play groups through to Buddy Walks, it is all because of him.




I also want to tell you how much you have helped me. When I was first told about Mitch, I was upset but 'fine' with it. It wasn't until he was a few months old that I realized,  I hadn't actually reached that point of acceptance. It was during one of these moments that I found your blog. I googled 'down syndrome blogs' and then went from there. Some, I didn't find relevant and others I couldn't get enough of. 

When I first found A Perfect Lily, I was a little unsure. I didn't know if I wanted to keep reading, if it was going to hurt to much, but I am so glad I did. You showed me through your words that Mitch is Mitch, Lily is Lily and they are just kids that happen to have an extra chromosome. Nothing to be afraid of,  just a whole lot more to love. 

Fast forward, two years and I am in a much better place. Mitch is doing amazing and I still keep up to date on not only yours, but many blogs. I couldn't ask for a better place to be in. I adore Lily and how fast she is growing and the new skills that she is learning. I am so glad that on a day I thought it wouldn't be ok, it showed me that it really is.

Once again, thank-you for including Mitch, and showing the world how lucky we are to have these kids around us.

Thank-you, 

Nicole


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

Thank YOU, Nicole, for sharing Mitch with me, and for sharing your heart as well.


Sunday, November 24, 2013

all call for photos

It's that time again !!




Do you have a loved one with Down syndrome ?

Every year we host a "thankful for you" photo montage set to music, and filled with pictures of your amazing kids and loved ones who share an extra chromosome. I so enjoy doing this, and as Lily is older it is so much fun to see how her online friends have grown ! If you would like to be included, please send a photo of your loved one with Down syndrome (child, sister, brother, aunt, uncle, cousin, etc.) to psalms127.5@gmail.com no later than Tuesday at 5 p.m.  Please make sure to get your photo in by that deadline, as I will be cooking all day Wednesday and won't have time to add late pictures in. (Apologizing ahead of time, because every year I receive late photos after I've posted the video, and it is extremely difficult to add them in once the montage has been saved and uploaded.)

Can't wait to see those amazing photos !!

Thursday, November 21, 2013

apples to oranges

It's that time again… the kids are at football practice, Lily is sleeping, and I have a few minutes to blog..

Yippee !!

I've been asked this question several times in the past few weeks, so I thought I would address it here: How is it emotionally, when Hayden is doing things way faster and easier than Lily did things as a baby?




Admittedly, it is a strange feeling. Because not only is Hayden doing things more easily and quickly than Lily- he is doing them fairly early as far as his age goes. He was crawling/scooting and sitting up at five and a half months…he's now just six months old and he is crawling on all fours everywhere and pushing himself into a sitting position.

And a few days ago he started talking…







Did you understand what he just said ? I think it was something along the lines of, "I prefer to be held all the time, Mom…why do you insist on putting me on the floor to play??"

SO any hoot… it is a mix of feelings I'm experiencing these days in regards to Hayden and his milestones. It's exciting and amazing to see him take off so quickly. And yet it's also hard, because in all likelihood he is my last baby. (I know, I know- I said that with Lily. But I'm 45 now, so in reality my baby bearing days are probably over. Sob.) That being said, I just love this age- where every day he is learning something new. It's just fun to watch, and the fun is multiplied when we have a dozen or so cheerleaders in the house in the form of siblings…they all get so excited very time he does something new, and I usually have five different kids running into my room at different times to announce his latest success - "MOM !! HAYDEN IS TALKING !!! DID YOU HEAR HIM ??!"


And on top of all of those feelings is a realization that Lily missed some of those milestones…she NEVER crawled. She went from sitting up to butt-scooting to walking.

But guess what?

She crawled last week. No kidding. I honestly thought she was physically incapable of doing a four-point crawl, because even when she was three she could not mimic us on all fours.

But last week when we were all standing around Hayden, watching him crawl like a pro and cheering him on, she immediately dropped to her knees and began crawling circles around him -- grinning her head off. Somebody wanted to make sure we didn't forget that she is every bit as cool as her brother.




So really, my answer to that question is - I feel fine with it all. Hayden is Hayden and Lily is Lily and they both have their strengths. Hayden is nailing milestones early, and Lily is taking her time and letting us enjoy each one - like watching a flower open up in slow motion - and it's all good.




And honestly, whatever Lily is lacking as far as knocking milestones out of the park, she more than makes up for in personality. She may have learned to fake sneeze much later than most kids, but when she nailed it, she nailed it…








…out of the park.





Wednesday, November 20, 2013

STOP THE PRESSES !!!

I am in awe. Totally completely in awe.

First of all, so many of you have donated to The Lost Boys Giveaway, that over $3,000 has been raised.  The giveaway will remain open until Julia travels to Eastern Europe- any funds raised over her travel costs will go directly to supplies for the Lost Boys' institution.

Secondly…




…this is Julia's son, Aaron. Today he draws with his hands…and you have to go HERE to see what a fantastic thing is being done with his drawings.

WARNING: grab your kleenex first.

Tuesday, November 19, 2013

dedication

Two weeks ago we had a very special service at church.. we had a baby dedication ceremony for Hayden and Norah, as well as several other children whose parents attend our church.

If you're unfamiliar with baby dedications, this is a time we set aside to dedicate our hearts to raising our children to live for God. We take time during our regular church service to pray for the parents of the babies being dedicated, as well as the children themselves.

This particular dedication was incredibly special to me as a Nana, because of watching our little granddaughter, Norah Jane, be prayed for. She is such a gift, and we feel so grateful for her. Jason and Naomi sang a special song (video below) and I pretty much sobbed through the whole thing.

Mackenzie took these photos of Hayden beforehand…I think they're my favorite pictures to date of him.










Here are Jason and Naomi…also my favorite musicians in the world :)


Monday, November 18, 2013

little dancer

Last week we had to miss Lily's dance class, as she had a fever and was asleep the entire day.

I wasn't sure how she would do today after missing a week…I was a little worried we missed the chance to build on the momentum from the previous class.

Turns out I had nothing to worry about.


Thursday, November 14, 2013

My Big Fat Pumpkin Patch Post

Welcome to my annual Big Fat Pumpkin Patch Post.

Here's a little peek into Pumpkin Patches Past...




And one more...





And here's this year...




Howz about that for nifty ???


This was our third year attending The Lone Pine pumpkin patch in beautiful Junction City, Oregon. Two years ago we went to Roloff Farms, and we intended to take my mom there this year. In fact, she came all the way from sunny Arizona just to go there. But three days before our "field trip" I happened to check their website, only to discover that they were closed the week of Halloween. A pumpkin patch, closed the week of Halloween ... go figure.

Anyhoot, we decided to return to Lone Pine, because we love their ice cream, and because it is only a twenty minute drive from here. Hayden is NOT one of those babies who loves long car rides, so for me this was a win-win situation. Ice cream plus happy baby equals happy mommy.


One of the fun things we enjoy about this particular pumpkin patch is the hayride out to the patch. We sing Halloween songs the whole way out there, and encourage all the others on the hayride to do the same.





Okay, really - did you just read the words ? Because I don't even know any Halloween songs.

But....we do enjoy the hayride.





And would you believe this is the ONLY picture I have of us picking pumpkins ??





Josiah and Monique had Mackenzie take their Christmas card photo in the pumpkin patch, and by the time they were done we had to get back on board the hayride. Thanks a lot, Jo and Mo. You will get tiny shriveled up gourds in your stocking this year.


;)


Look who loves hayrides, even if he doesn't like van rides....




And if we weren't missing Jason and Naomi and their kids, and Mackenzie (taking the pic) I could have used this for our annual Christmas card photo...




...maybe I will photoshop them in. Stay tuned.


Kenzie loved this guy. I'm not kidding.




Until he tried to bite her fingers off.





The weather was BEE-YOU-TI-FUL that day. Seriously, we could not have asked for better weather- sunshine and warmth and the lightest of breezes in the air.




My favorite part of the whole pumpkin patch experience was the indoor farmer's market....




For the love of gourds !!


But what we REALLY all came for was this...








They serve gigantic scoops at a very reasonable price, and for some reason ice cream just tastes better at a pumpkin patch.

Grammi was very impressed with the corn display...apparently...





Lily didn't seem impressed with anything....




....until she saw the candy display !!!






Mackenzie thought these were pretty cool....





This is me and my gorgeous daughter-in-love. She is three months pregnant (almost four!) in this photo and has the cuuuuutest miniature baby bump. We find out in a few weeks what they are having- I CAN'T WAIT TO SHOP !!!!






Daddy always has the magic touch with Hayden when it comes to naps....





We had such a great day .... can't wait to go again next year !!!





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



P.S. If you haven't read, we are hosting a Lost Boys Giveaway, featuring a brand new iPad as a prize. Thank you SO MUCH to all who have donated - go HERE to enter if you haven't already !!

Sunday, November 10, 2013

Lost Boys Giveaway

If you have never really read the words on this blog before (because I am willing to bet many of you come for the pictures of Lily !), I hope that you read the words in this post today. My friend Julia says them so much better than I could, so I am borrowing them from her blog...



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


They stole our hearts three years ago.
 
They stole our hearts.
 
We have tried to go back to the 'normal' that we were before we met them.  But once our hearts were stolen, there is no returning. 
 
When we came out of that village with Aaron in our arms three years ago we promised ourselves that we would do whatever we could to help the boys we left behind.  We knew that they were Lost without us.   Tucked away in a village out in the middle of nowhere.  Not even the people in the village had ever stepped foot inside those gates. 
 
God placed their stories and the burden of their situation on our hearts and made it clear that those boys mattered to Him.  The 60 boys we saw sitting in their sheds each day.  Staring at the walls.  Moaning.  Groaning.  Bored out of their minds.  The 40 and more boys who we knew were locked away in the forbidden laying down rooms.  Laying there day after day after lonely day.  Laying there waiting to die.  Just waiting to die.  They were our boys.  Our Lost Boys.
 
We came home broken.  Exhausted.  Wanting to move on with our lives but those boys who had been lost to the world had stolen our hearts.  There was no return.  Through God's grace, we found a ministry team in that country who was willing to go in and minister to them.   We wanted so much for them to be able to minister to all the boys.  The 60 and the 40+.  The boys in the sheds and the boys in the rooms.  For three years we have given and have raised financial support to allow them to go and bring much needed supplies and gifts to the boys.  It has not been easy.  They have had to beg each time to be allowed in and many times they have been turned away.  Sadly, they have only been allowed to minister but to just a few.  20 boys at the most.  The best ones.  The 'deserving' ones.  Oh how our hearts have longed for more but we have been grateful for this little bit.
 
And God has been stirring and working and moving in hearts.  Since we have been home THREE LOST BOYS have found families. 
 
Brady/Judd
 
 
 
Alexei/Benjamin
 
alexei update Alexei
 
 
Heath
 
YES MY DEAR FRIENDS.... THAT IS HEATH... LOOK AT HIM... HE CAN WALK!!!
 
 
 
 
 
Since we have been home another Lost Boy has a Mama and a Papa coming soon.  Soon.
 
Samuel
 
 
Since we have been home... Four other boys now have a chance for a family.  A chance to get out of the sheds.
 
They are listed on Reece's Rainbow and all four have NICE grants.
 
                                   Pearson                      Dagmar              Porter                 Grady
30520132428 30520133548 Porter 2013 30520133224
 
Since we have been home the institute has been blessed with much needed supplies, repairs. 
 
Since we have been home the director has been lavished with prayers and love and acts of kindness from the ministry team and the families. 
 
Since we have been home the caretakers and the boys and the director have been touched by God each time another person walks through those gates.
 
Since we have been home.
 
But since we have been home.... I have wanted to go back.
 
To go back and say thank you.
 
To go back and lavish love on the boys.
 
To go back and be their voice on the ground. 
 
To go back so they can see that a child can thrive outside those gates.
 
The longing to go back has burned in my heart.
 
But we never thought the way would be made clear for that to happen.
 
It just seemed rather impossible...
 
But sometimes doors crack open.
 
When they do you just have to jump fast before they shut again.
 
Months ago a friend and I were chatting on-line.  She was in process to adopt three children from a country that stole my heart three years ago.  I was sharing with her my deep desire to go back.  In the course of the conversation she shared with me that they had run out of options for finding someone to help her bring the three babes out.  She was figuring she was going to have to do it alone but would much rather have had an extra set of hands. 
 
You can imagine where that conversation led.
 
Oh I wanted to go help her.  I wanted to help her with all my heart.
 
Rob and I talked and we both agreed that it was a worthy reason to cross the ocean.  And we both also agreed that while I was there... I could possibly take a small side-trip to a certain city to meet a certain ministry team who has been ministering to our very precious Lost Boys whom we left behind.
 
I didn't think I would be able to actually visit the Lost Boys.  But to meet the team.  To encourage them.  To see what they are doing.  That was worth its weight in gold to me.
 
So I said yes.
 
We didn't want to fundraise.  I ask for money for everyone else but did not want to fundraise for this trip.
 
We had money set aside if we needed it.  We would fundraise for my friend and since she was working into her budget for a helper - well - with the money we had and what she raised - my trip should be covered.
 
Easy.
 
But the money we set aside... we gave it away.  A family in need adopting.... we couldn't say no.  We have NO REGRETS.  When we gave it away we knew we were risking my trip.  But two children needed out.  It was not an option to say no.
 
We were left with the fundraising efforts of our friend. 
 
She didn't raise all that they needed much less raise enough to cover my help.
 
There was just no way.
By the end of September the door looked closed.
 
Financially it just wasn't going to happen.
 
But each time I tried to close that door... someone's toe would get stuck inside and it wouldn't fully shut.
We kept getting that tiny little whisper in our hearts to not close the door. 
 
We went around and around.
 
Discussions that went nowhere.
 
At the end of October my friend and her husband crossed the ocean and began the process to meet her precious treasures....
 
Yes... You know who they are....
 
I just about went nuts when she sent me these pictures and more...
 
 
 
Oh I wanted to go over so badly it was killing me!!
As we debated and prayed I contacted Alyona who leads the ministry team and shared with her that I would love to meet her and to visit some of her ministries and maybe.... maybe... but probably not possible... but maybe... I could go visit the Lost Boys????
Her response shocked me and sealed the trip in my heart.
Alyona believes that the director would welcome me with open arms. 
YOU HAVE GOT TO BE KIDDING!
The desire of my heart is to go back.
Even if all I am able to do is visit the ministry team and thank them for lavishing love on our boys.  That is a worthy enough reason to go back.
But if God opens the door to actually go to the institute then I am on that train!!
It is not set in stone.
There is still a possibility I will be turned away.
But God is whispering GO in our hearts and HE is opening the doors and we are stepping out in faith.
There is more I have to share.
Stories worth telling.
This trip is going to require a whole suitcase full of Kleenex.
Just know for now...
I'M GOING BACK!



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



If you have been a reader here for a long time, you already know my friend Julia. If you are new, you can read more about her HERE. In a nutshell, she is amazing, She and her husband adopted their son Aaron from Eastern Europe, and she has passionately fundraised for HUNDREDS of children with special needs since returning. 

I want to help Julia return to Aaron's institution to visit The Lost Boys. She had the funds to go, but true to her generous nature, she gave them to an adoptive family.

One of my dear friends contacted me last week offering to help Julia, and she asked me to host a giveaway to help raise funds for her trip.

So we are giving away a brand new iPad to help send Julia back to visit her Lost Boys.



The rules are very simple. Go to Julia's blog and donate ten dollars or more for her trip to minister to The Lost Boys. (There is a donation box on her sidebar.) Come back here and leave a comment on this post letting me know that you donated. One winner will be drawn from the comment section just before Julia leaves the country - you can gain an extra entry by blogging about this giveaway and leaving the link in the comment section as well.

I can't tell you how much I love Julia and her heart for orphans....if I had the money to send her myself I would. She has blessed more people in a few years than most people bless in a lifetime. Please help me send my friend back to minister to the fatherless, to bring hope and love to The Lost Boys.