Friday, October 7, 2011

a letter from Lily

HI folks!

Lily here.

Mama said I could have free rein on my blog tonight. She said I could write about anything I wanted! I had to think about that for a minute...


And then it hit me- this is my chance to tell the world what I think about Down syndrome! Oh, this is gonna be GOOD!


First of all, I just wanted to say that even though I have an extra chromosome, I'm really just like any other kid my age in so many ways. Lovable, feisty, incredibly brilliant...you know, the usual stuff.



Mama says that having an extra chromosome makes me extra cute. That really comes in handy sometimes, because I've found that I can do just about anything I want- yank the dog's tail, eat my mom's lipstick, throw yogurt all over the floor - and all I have to do is pull a cute face like this one, and all is forgiven!


And every now and then someone tells me "No no, Lily!" when I pull my shenanigans...but I just laugh...


...because I know I've got them all wrapped around my bent little pinkie!

When I was born, Mama read that kids with Down syndrome can sometimes be a little stubborn. So far I have done my best to live up to that description. I wouldn't call it stubbornness, though. Maybe persistent or determined is a better word...




Because determination can go a long way in helping me to do things that I really want to do!


And that's one thing my family has all noticed about me- it might take me a little bit longer than other babies my age to hit typical milestones like crawling and standing and walking...but I work extra hard at learning those things. There isn't anything I do that my family takes for granted, because I work so hard at it all. It's a team effort, and every single person in my family is helping me to learn, and cheering me on. So when I nail something- like standing up or signing a word - you can bet there's a big party goin' on here!


Mama says that's the blessing of Down syndrome- we get to celebrate all the little things that so often get overlooked in life. My extra chromosome causes everyone to slow down and stop and enjoy the ordinary miracles of life.


There's something else I want you to know about Down syndrome. I'm really not suffering from it. I am so treasured and spoiled and loved by everyone who knows me, and I really have the best life. So if you ever hear someone say "she's suffering from Down syndrome", please tell them to stop by my house and visit me some day...and see how much I'm suffering...






Something else I've heard Mama say is that some people don't want to bring a baby who has Down syndrome into this world, because they think that child will be a burden to their siblings. Well, I just want you to know, my brothers and sisters all fight over me! Every single one of them says I'm their favorite, and nobody ever calls me a burden!



I mean, how could anybody with such rock-star status like me be a burden?


In fact, Mama says that next to salvation, I'm her greatest gift in life. She says it actually scares her that she used to pray for a baby without Down syndrome. Can you imagine if God would have answered her prayers?? She would have missed out on me!!!


             ....good thing God's a lot smarter than Mama!

One last thing I want to say about Down syndrome. I've been thinking a lot about one of my friends who shares my extra chromosome. My family prays for him all the time, that someone would go rescue him. It makes me so sad that he doesn't have a family like mine, to love him and tell him how special he is. No one to tuck him in at night, like my mama and daddy do for me. Nobody to give him kisses or cheer for him when he does something good, and nobody to comfort him when he's sad or lonely. Now that's suffering.



So will you do me a favor? Will you give just five dollars to Artem's grant fund on Reece's Rainbow, so that a family will adopt him? If we can get his grant fund up to $10,000 by the end of this month, there will surely be a family who comes forward to claim him. 




Five dollars is such an easy thing to give. I think we have that much change lying around in between the cushions of our couches! Mama says that Artem's grant fund has grown by almost $1,000 in less than a week- just by LOTS of people giving five dollars or more! So it's working!

What do you say? Will you help us save Artem???





I just know you WILL!!

Love always,

Lily oxox

15 comments:

Team Lando said...

Dear Lily,

You are looking very pretty and grown up. Such pretty pictures, too. I agree that us kids with DS are determined. Mommy still calls me stubborn, though.

I like your blog.

Love, Ellie

Becca said...

Beautiful, beautiful Lily. (hehehe, love your amazing penmanship!)

Race Bannon said...

I have no problem with the way she holds her pen - she is writing upsidedown...but please, teach her how to hold her spoon correcty, seriously!

stephanie said...

Patty she just gets more and more adorable. She is perfect.

Mackenzie Rice said...

hahaha love that last pic, shes so freakin CUTE

Mrs. K said...

Lily, if I were you I would not worry about how to hold my spoon...fingers were made before spoons and have proven to be much more useful. As for your penmanship and the ability to write upsidedown, I think Race is jealous.

You do a great job of blogging and telling the DS story from your side of the chromosome. BTW your personal photographer does an EXCELLENT job of capturing your BEAUTIFUL face in so many ways.

Grammi could just reach through the PC screen and grab you up and hug you and kiss all that cereal off your sweet face. I would love to tickle those toes and play "this little piggie."

Love, hugs and many kisses for you and your siblings. Grammi

Heather said...

Love her! And she IS looking so grown up these days...

Miss Lily, I just hope I am blessed enough to have a baby like you one day. You're amazing!

My Little Wonders said...

Lily, I love your blog post today! And your photographer does an excellent job capturing you "on film"! (My son would say film is something that we used to use in the olden days.) :) I'm also very impressed with your penmanship and spelling too.

Anonymous said...

Hi Lily! Thanks for the great post. I came here to ask your mama a tiny favor...

Almost a year ago I do believe she introduced me to a little love named Olga who needs a family. We rallied and donated and raised funds for her grant.. and then a family found her! and are working so hard to bring her home... doing everything they can think of the raise the rest of her ransom.

Then they were recently told that with just a small amount more, they can bring home a brother or sister for Olga! Can you imagine? Saving two! But they seem to be having a hard time raising the money they need to bring home #2.

If they dont get to the ransom together to bring home the second deserving little love, they will never be able to adopt again, because its sooo very expensive.

I was hoping maybe your mama could remind her readers about Olga's forever family and their journey now to be able to possibly pull another innocent and deserving angel from their gloomy fate!

I don't have much to give, and I don't have a blog with a large following, but I do have the ability to TRY... so here I am...

Olga's mommy doesn't know I'm doing this, but I was just sad to feel how discouraging it must have been the past several months trying so hard and getting almost no where...

Please ask your mommy to help!

Thanks a bunch little Lily, you're such a cutie! I can't wait to see you walking! I know it'll happen soon!!

:-)

A friend.

Patti said...

Dear Anonymous,

I'm probably going to sound a lil' defensive here....maybe because I am. I just typed "Olga" into my posts on my dashboard to see how many times I've linked to or sent readers to Olga's family's blog AFTER December. It was 49 times. I've never forgotten Olga- in fact a lot of the items her mommy has done giveaways with were things I sent her. We've asked readers to give to Olga, continued to personally give to the Abells ourselves, and I've emailed Jenn many times telling her we're trying to do everything we can to help them. Maybe you missed all the times I sent people their way? At some point readers are responsible for who they choose to give to. And while I wish I could personally fund the Abell's adoption, I can't. And I do believe- because I know Jenn's heart- that she is thrilled to see us helping lots of other children as well...because if all we did was focus on Olga, there would be no family for Peter...or Kareen...or Albina..or Autumn...or Artem. I hope you understand how much we love the children we bring to Lily's readers' attention. One little blog can only do so much. oxox Lily's mama

lovemy3 said...

Lily is quite the writer for such a young age :-) she is soo adorable!!

Lori said...

That little smile is soooo stinkin cute!!!

wellitsme said...

Thanks for responding Patti. I didn't even know Olga's moms name. But I just have a bleeding heart and I notice that some families just fare better in the bloggy world than others. I wish I could personally save them all, but I can't...

You're response was fair. I just sit here on my end and imagine how very discouraging it may be to try to fundraise and see no results and then to see someone else fundraise in 3-5 days and max out...

That's all!! Thought I would TRY.

Anna Theurer said...

"Mama says that's the blessing of Down syndrome- we get to celebrate all the little things that so often get overlooked in life. "---Well said! I can tell that Lily suffers so. Just look at her smile and those rockstar glasses. Yep, she is suffering from severe CUTENESS!

I have never forgotten Olga. I follow their Saving A Starfish blog.

Monica (Jakel) Crumley said...

Sweet sweet Lily. Oh, how you suffer! Just about as much as John Michael, I'm sure!