Tuesday, November 30, 2010

LILY IS CRAWLING!!!!!!

Oh my goodness, can't stop the happy tears!! Just as I finished the post below (please don't miss the sweet offer!) my kids all came running into my room yelling, "Mama! Lily is CRAWLING!!!!"




I can't believe my baby girl !!

A Gift from Little Lily...

Dear Readers,

I am so excited to announce this special promotion for Lily's readers..


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For one week Etsy shop Little Lily is offering a 15% discount on all items, just by entering the code lilysfriends at checkout.


Etsy owner, Jade, has this to say about her shop and items...


Inspired by my four daughters, Little Lily is the perfect way to care for the most precious people in your life. The first time you bathe your brand new baby is a magical and sometimes nerve wracking experience; make it a little more comfortable with Little Lily Bamboo Baby Wipes. You can wash your little one's tender skin with the softness of clouds, and the added benefit that comes with using an organic, chemical free product! After baby is all clean, wrap them in the soft warm comfort of a Little Lily Hooded Baby Towel. With a generous size to envelop your little one, and a cozy, double lined hood, you'll never want to stop cuddling your fresh, clean baby!


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Just a few reasons to use bamboo:


Bamboo:
Why use it?
*Bamboo is a natural, green, eco-friendly plant that is biodegradable*Considered a sustainable natural resource*Has natural properties that wick moisture *Naturally anti-bacterial*Repellent to harmful UV rays*Hypoallergenic*Breathable*No chemical additives*Lightweight*Strong*Naturally soft*Holds 3 times its weight in moisture*Produced Organically

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Aren't they so sweet?

Little Lily also has these swaddler blankets...

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And just a little hint...Cathy, from A Walk in Lily's Garden is going to be hosting an online auction in January to raise money for bringing baby Melanie home. ...Little Lily is generously donating a hooded towel for this auction! Don't miss a chance to bid on a sweet hoodie and donate to Melanie in the process!

And just because I can never post without slipping a Lily photo in...

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Happy Shopping!!!:)

Monday, November 29, 2010

OOPS!

...this was supposed to go on the post below!!


Lily Loves Bath Time...and an Upcoming Interview!!

Dearest Lily,

You have a new love...

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bath time!!


You used to patiently endure your sudsy soak, with a little "I'm-putting-up-with-this-but-I'd-rather-be-doing-something-else" look. You never really cried, just kind of kicked back in your hot pink tub with a bored look on your face. I tried to get you to play with the bubbles, or splash the water with your pruney little fingers...to no avail.

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You would just lie in your tub, sucking a finger or two, oblivious to the splashing fun just waiting to be had in the calm waters surrounding you.

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"Look, Lils!" I would coax, and take your tiny hand in mine. I would help you pat the water, trying to interest you in the bubbles...but you just smiled at me, as if to say, "What is the big deal here, Mama?"

But lately....
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You've woken up to the wonder of water!


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You happily flap your arms up and down and babble excitedly, "DADADADADADA!", grinning ear to ear...

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You smile at anyone around you and proclaim your love for all things wet and sudsy by jabbering on and on, "MAMAMAMAMA!"


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Sissy tries to get you to look at the camera, but you are too mesmorized by those pearly, slippery bubbles....

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Kenzie and I cannot control our laughter as you splash and coo and squeal with delight. We are having so much fun watching you have fun ...our little mermaid come alive!

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So Mama learns another lesson: you will do things in your own time. It's not a matter of if, it's just a matter of when. And that just makes each milestone a little more magical... and we never take for granted a single one of them anymore.

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Loving you more each day,

Mama oxoxox

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Dear Readers,

Just wanted to let you know I am SO excited about an upcoming post. I am interviewing a mama who has adopted a beautiful little girl from Eastern Europe this year, through Reece's Rainbow....Lisa, Mama to Alina and Bridget from Living In The Light !!!

I am beyond thrilled at this opportunity to find out first-hand what adopting through Reece's Rainbow is all about. I hope you will "tune in" when the interview is posted!!

Good things to come!
Patti

Sneak Peek

Dearest Lils,

We stayed up TOO late decorating the house for Christmas..I wanted to write a letter to you tonight, telling you all about how adorable you are during bath time lately...but I am too beat! Sissy took the cutest pictures ever of you this morning before church, while Mama was giving you a bath in the kitchen sink:) I can't wait to post them here tomorrow, cuz I know Grammi is going to love seeing how chubby her Lilybird is getting...but I have to go to sleep now. Here's just a little sneak for now..

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Sweet dreams,
Mama oxoxox

Sunday, November 28, 2010

Winner!!

Dear Readers,

I am headed out the door to church, but I just wanted to post the winner to Lily's giveaway before I do. I promised our kids we would decorate the house for Christmas after church tonight, and if they see me get on the computer... there will be weeping and gnashing of teeth:)

Just an idea for mamas whose finances look like ours this year: we told the children that rather than spend a lot of money (which we don't have anyway lol) we are going to do one fun, free "Christmas-y" thing each day this month. We had SO much fun making up a calendar, and believe me- my kids are holding me to the daily events!! Also, I am showing my babies -all nine of them still at home- the children on Reece's Rainbow...to give them a heart for those less fortunate for themselves, and to help them understand and value the life they have.

One of Lily's readers left this awesome comment on my Rescue the Perishing post:


I can't seem to make it through any of your posts without crying....whether it be happy or sad tears, there are always tears. I am so happy for that one extra chromosome.....I would have never met the incredible people that I cherish so much and the people that I only know through their pictures and posts. I would have probably never come to understand how very precious life is and that every single moment with my kids is an important one. Thank God for sending me this angel with a little something special!! He has truly changed my soul. This Christmas, one of the gifts that we are giving each of our children is a prepaid credit card that they can use to donate to the kids on Reece's Rainbow. They all have their own special kids that they have come to love. I sure wish I could bring them all home.

(thank you, Kerri for the idea!)




SOOOOOOOOOOOOO without further ado- the winner of the lovely earrings by TwoTurtleDoves is....




cathy said...
Patti, just donated....hope everyone else does, too. We all have our difficulties in life, but we must help, even a bit. You children are beautiful....Lily is an angel . Our children are a bit older 26, 23 & 19. We have had our share....heart defects, cancer, but we are stronger. bless you

Cathy...please send me your email so I can put you in touch with Mindy at Etsy shop TwoLittleDoves!

Also-

to receive a 10% discount on all the other sweet finds at Mindy's shop, just type in the code lilysfriends when you shop!

Thanks for everyone who participated!

Giveaway Still Open!!

Lilybird's giveaway for a darling pair of sterling silver bird earrings from Etsy seller TwoLittleDoves is still open until this evening! Only ten readers are entered so far, so your chances to win are pretty good!

Leave a comment on the giveaway post below (not this post) to be entered to win...



Mindy has some really unique and gorgeous items in her shop...


Photobucket And for the next week she is offering a discount for Lily's readers...I'll post the code to use tonight and announce the winner!

Saturday, November 27, 2010

Rescue the Perishing

Dearest Lily,

This weekend my heart is so full ...
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...of loving you, and being so very thankful for you...

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...and feeling so heavy hearted about the children Daddy and I have been looking at on Reece's Rainbow.
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Last night I showed Daddy the video of the mental institution in Serbia where children who are disabled are left when orphanages can no longer keep them. Daddy and I watched in horror, as images of 21 year old men, left in cribs since they were children, played across the screen. Grown men, legs atrophied, skin hanging on their fragile and growth-stunted bones...sucking their thumbs. They have never had a chance to grow up.

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We watched children, left in cribs, often tied to their cribs, left alone...for hours...days...on end.

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Lily, I can't get those images out of my mind.

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I can't stop thinking about innocent children, who did nothing wrong in life- except arrive in this world with an extra chromosome- being placed in mental institutions with grown men and women...and no mommy and daddy to care for them.

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I didn't sleep much last night.

I've been sick since Wednesday, a nasty head cold that just won't quit, coughing and aches and chills...I'm a big baby when it comes to sickness, Lily.

So all night I kept waking up coughing and asking Daddy to get me tylenol and generally feeling like a truck hit me. And lying there in the dark, those images kept playing themselves over and over in my mind.

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Olga and Melanie and babies just like them...I prayed and cried and slept, prayed and cried and slept... And dreamt of buildings filled with cribs and human beings discarded, like chaff before the wind.

And some would say- well, what can you do? You can't save every orphan, and there are thousands...perhaps hundreds of thousands of orphans like the ones we watched. Where would you start?


But I would counter- how can I not do something.

How can I sit in my warm and safe and love-filled home, and not respond.

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Maybe I can't go rescue every baby, every unwanted child. But I can certainly do something.

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Maybe my small contribution is just a tiny drop of water in a chasm so vast, I'll never fill it myself. Maybe our gift is so small it hardly goes noticed.


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But what is the alternative? To turn my head and look the other way? Pretend the images I saw weren't real, or happened in a different lifetime? Bury my head in the sand and think only good thoughts, ignore the tugging at my heart, the persistent nagging voice that says, "That could be Lily" ?

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I can't do that.

I can't pretend that prayer is my only solution, that wishful thinking or hoping for a better life for those children, is my only means of helping them. I can't claim ignorance or lack of information...I've seen too much.


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Maybe you could say I'm ruined, Lily.

I am ruined to the apathy and complacency that has gripped too many hearts for too long.

Including mine.


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I'm ruined in that I can't wade through a frenzied and greedy crowd at a store, fighting for the last temporal and meaningless piece of plastic that might fill a heart for a day, but won't feed the soul for one minute....without picturing those tiny wasted faces, languishing in a building somewhere far away, dying for lack of love.


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I can't take one beautiful, perfect, blessed moment for granted anymore ...

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I can't sit back and do nothing.

As Daddy and I were lying in bed last night, your warm and tiny body nestled in between the two of us, he asked me..."What are we going to do about them, Patti?"

I said I didn't know, but that I was asking God for a pile of money. Because if I had it, I'd hop on a plane that fast and go rescue one of those babies. I don't need to pray and ask God if I'm called to it- if a child is drowning in front of you, you don't pray, you act.

I asked Daddy what he thought and he said, why don't I pray and believe God for it?


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So Lily, I am praying with everything that is in me. I am giving what I can, and foregoing some really temporal, meaningless luxuries in the future. I'm not giving up on asking people to consider giving to a family in the process of adopting one of these hidden gems.

I don't care if it takes me a lifetime, I'm going to pray and give and believe and do all I can to rescue the perishing.

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Matthew 25:40 Then the King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."


And once again, just as I was about to hit publish post, this comment came to my inbox...

Thanks so much for sharing all of their answers. I do have to admit something. I came across your blog, along with a few others that you mentioned answered your questions, randomly. I don't even know or remember the day or who'se blog I happen to click on their followers..anywho...I have been following daily. I love seeing your outlook on life and your precious family. Ok so here is the fabulous part (at least to us) I have always wanted to adopt. My husband and I love kids (3 of our own) and we feel this is something we have been called to do. But after reading all of the mommas mentioned, we stumbled across Reeces Rainbows over 7 months ago. And as most of the bloggers I read say, I can't get these babies out of my head or heart. Long story short, we will be adopting one of these babies when we are ready. We would NOT have found this place or been encouraged that these precious souls need our help without your blog. Isn't it funny how God works that way. So I wanted to say a huge thanks for the beginning of changing our life...we won't be able to adopt for a couple years but when we do I know life will be so beautiful. This little soul will change our lives and all those around us, more than they will ever know. Thank you for blogging, even when it is hard. God bless you and your family!!


Holding you more closely tonight,

Mama oxox

Friday, November 26, 2010

"Day After" Giveaway:)

Dearest Lilybird,

I'm not a fan of the day after Thanksgiving sales. But here we are, bundling up and getting ready to head out to brave the cold and crowds and hype, just you and Mama. Cuz your sister Abbi wants a Webkins, Jackson wants a rifle, Caleb asked for the game Mousetrap (do they still sell that game?) and your other siblings want books. And I'm pretty sure Walmart has all those things, so you and I are going to spend some Mama-daughter time together in search of those Christmas wish-list items.

I'd much rather be home sleeping in with you, but those frenetic crowds are just waiting for me. Sigh.

So to counter that gotta-have-get-it-while-you-can spirit, I'm asking Readers to go over to Stephanie's blog, Daily Smiles, and look at her little Olga, from Reece's Rainbow. Stephanie posed a $5 challenge to all of her readers. She asked each follower to chip in $5 to bring Olga home. $5 is nothing- it's a Starbucks drink these days! But if we all put our $5 in...that adds up to a chunk of change. I hope your readers will go to Daily Smiles...watch the video...and give.

Love always,
Mama oxox

And to say "thank you" for donating to Olga, I am hosting another giveaway! Mindy from Etsy shop TwoLittle Doves is donating these beautiful earrings to one winning commenter from Lily's comment section.


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Smooth sterling silver doves dangle from sterling silver hooks (perfect for your sensitive ears!)

also available in silver plated lever backs if preferred

Mindy has the sweetest jewelry over at TwoLittleDoves, and after the giveaway she is offering a discount to Lily's readers. I'll give that code on Sunday night when I post the winner for these earrings!
If you leave a comment here, I will have Random.org select a winner Sunday night. If you donate to Olga, leave a comment on Steph's blog and you can leave another comment here for a second chance to win.
***EDITED TO ADD- you do not have to donate to Olga to enter the giveaway****
THANK YOU to Lily's readers, and please, if you can't give, pray for Olga and others like her at Reece's Rainbow.
Love,
Patti


Wednesday, November 24, 2010

Thankful for...YOU

Dear Readers,

On this wonderful day of Thanksgiving, one of the things I am most thankful for...oh my word, I am just TYPING, not even talking, and I am already tearing up! Don't know how I am going to get through our family tradition of saying what we're thankful for at the table! ANYWAY, one of the things I am most thankful for is YOU.

I can say- without a doubt- the thing that has helped me the most this year, as far as Lily having Down syndrome, besides God Himself...is the beautiful community of people I have met online through this blog. Whether you're a reader, a commenter, or a fellow blogging friend- your kind words and encouragement and love is what brought us through these past ten months.

I have said it many times- but I wore out the letter D on my keyboard, typing in Down syndrome this past year. And blogs are where I found the most information, the best "real life" picture of what a life lived with Down syndrome means. I have met so many friends who are not just my friends now- you are my family.

I can't tell you how many times I have been lying in bed at night thinking- how can I get us all in one place together? Can I plan a "reunion" where we could all meet?? But some of you live in Canada, some on the East Coast, some in the south, some in the Midwest... and here I am in the Great Northwest.

So my little brainstorming landed me on this post- I asked some of my favorite blogging mamas to answer three questions about their littles, and to send a photo of their munchkins as well.

***disclaimer: this post does not include all of the beautiful blogs I follow, just the ones I had time to "interview" today. I have about 20 more moms I hope to get in touch with for a future post!*****

Here are the three questions I asked each mama:

1)How did you find out your baby had Down syndrome?

2)What do you know now about Ds, that you wish you knew before?

3)If you could give one piece of advice to a new mom receiving a diagnosis of Ds for her baby- what would it be?

So without further ado, here are my lifelines:) And they are in no particular order, I'm just copying and pasting as the response emails come in!


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Wren is Mommy to Sutter, who is one of the cutest little guys I know! I found Wren's blog through a mutual blogging friend..her blog title caught my eye because it is A Different Kind of Perfect - so similar to Lily's. Imagine my surprise when I found out they were born on the same day!


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1) Sutter was born on Saturday 1/16/2010 at 11:40pm, and at 10am Sunday morning (1/17) the on call Pediatrician came in our hospital room to do Sutter's initial newborn check up. Although I'm sure I'll never forget the words a great deal of what came next is a blur...."I think your son may have Down syndrome and I'd like to order a genetic blood test". Enter the blur! I do remember thinking "I'm sorry, who are you", "you're wrong", "so what, he's still my perfect baby" and "stop using that pathetic tone of voice when you refer to my baby". I'm sure there were several other things going through my mind, but again the blur had set in and I wasn't comprehending or retaining much. I didn't cry and I don't think I spoke, just sat there and nodded my head as if to say I understood what he was telling me..... clearly I didn't! He asked if we had any questions and then left the room and sent my parents back in. We told my parents what he said and then assured them that he was probably wrong since there were only a couple of things that made him think Sutter "might" have Down syndrome.....tiny low ears, the gap between his big toe and second toe seemed large and his face was a little flat. On Tuesday 1/26/2010 Sutter's doctor called to confirm that Sutter did in fact have Trisomy 21.....by this point I already knew what the test would say!


2) I wish I knew that Sutter would learn and develop just like a "typical" baby. Sure it may take a little longer than a typical baby, but Sutter is VERY capable of learning and in my opinion is smart. I'm not sure why this surprised me as much as it did, but most likely it was due to my ignorance of Down syndrome and what it actually meant prior to having Sutter.

3) I have so many things I would tell that new mom, but I think the first thing I would say is take LOTS of pictures and don't delete them if you "see" the Down syndrome. I promise one day when you look back at those pictures, you won't see the Down syndrome, you'll only see your sweet precious newborn baby!

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Addison's Mommy, Deanna, has an incredible sense of humor...especially given all she has gone through with her daughter medically. My favorite posts on her blog, Everything and Nothing From Essex are "the photos with captions" posts..Addison a.k.a. Chubbs has THE CUTEST expressions and my family usually knows which blog I'm on because I am laughing out loud while I'm reading it.


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1) At our 19 week ultrasound, in addition to finding out that we were having a baby girl, our OB found two large cysts on the back of her neck, abruptly ending the much anticipated half way ultrasound. We were sent to the high risk center the next week where they found four cysts on the back of her neck with an even more detailed ultrasound. We were advised to do an amnio because our chances jumped to 1/2 of our baby either having Down Syndrome or Turner's Syndrome with the discovery of the cysts. (As I was 25, our previous risk factor was 1/1400). Long story short- we did the amnio and it came back positive for Trisomy 21. The next twenty weeks of dealing with the concept and stereotypes of Down syndrome before having met my baby were incredibly difficult.

2) I wish I had known before I had Addison that it was all going to be OK; that the "good" life was not over. I was scared of so many things- of her looking funny, of me not being able to love her, of resenting a daughter with limited intelligence, of life never being normal again, of never being able to feel happy or joy again. When I met Addison, those fears were all overtaken by love. A love so big that it surpassed my even greatest fears. The joy and happiness I felt then and now are far greater than any other time in my life. Addison is the best "thing" that has ever happened to me- Down syndrome and all.

3) If you have received a diagnosis of DS for your baby- first of all, Congratulations! You have no idea how your life is about to change for the better. I am more familiar with a prenatal diagnosis, so if that is you, I would encourage you to still view your baby as a baby. Don't view your baby as simply a "syndrome". This is hard especially since you haven't met your baby yet. Your baby is every much an individual and a miracle as any other baby. Don't let the diagnosis take away from your joy of meeting this new life. An extra chromosome does not guarantee anything about your baby. She/he is still your baby, first and foremost and will be a child who needs you to accept him/her exactly as he was created- perfect for you.

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Verity's Mama, Susanna is a kindred spirit with ten children, the youngest of whom has Ds. Her faith inspires me, and it leaps off the pages of her blog The Blessing of Verity. Our family prayed for so long that baby Verity's heart would be okay, that we feel like we know her. Thank you, Susanna, for your Godly example of faith through life's most difficult trials.

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1) For the long version, click here! http://theblessingofverity.com/2010/02/day-one/ The short version is that we had a routine mid-pregnancy ultrasound done. I just wanted to find out pink or blue, and was ecstatic to see that a little GIRL was on the way! Like my friend Patti, we had seven boys and only two girls at that point! Our excitement was somewhat tempered by the fact that I had seen a hole in our tiny daughter’s heart. Three days later, I called my midwife for the ultrasound report, and she told me that our baby girl had a major heart defect and an absent nasal bone, both of which pointed to Down syndrome.

2) Almost everything there is to know about Down syndrome! I was profoundly ignorant, shocked, grieved, and fearful. I wish I’d known... ...that children with Ds are smart and cute and have lots of personality, including a sense of humor. Really, I thought their hair grew in an institutional haircut and they had dull expressions on their faces all the time. Was I ever wrong! And Lily was one of the first babies I found online to teach me differently. ...that children with Ds could learn to read and write. (Yes, isn’t that embarrassing?) That they just learn differently, but they DO learn. ...that adults with Ds have learned to drive, gone to college, written books, become public speakers, gotten married, owned businesses, and the list seems to be growing. ...that having a child with Ds would add so much dimension to life. That loving someone with Ds changes the way you see, and definitely for the better. ...that we would get way more fun and excitement out of every little milestone she reaches than we ever did out of our typical children’s accomplishments. ...that the fear of Down syndrome is borne of ignorance. That the people to learn from are the people who love someone with Ds. Because they know.

3) It is normal to grieve the child you were expecting to get, but I promise that some day you will celebrate the child you received!

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Jenny is Mommy to Russell...it's kind of funny how I met my sweet Canadian friend...I kept seeing a visitor from Canada on the feedjit tab...so when Jenny left a comment and I clicked on her profile, I realized she was my Canadian visitor. The name of her blog is Our Little Chilli Tribe, so I always assumed she was from Chilliwack, BC ...just a little while ago I found out her last name is Chillihitzia, thus her blog name!

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1. Russell was born just after midnight on the 29th of December. I remember one of the very first things I said when I held him that first time was "He is so perfect" Little did I know how much those words would mean to me in the weeks to come. Russell slept that entire night, I knew this was strange and that he seemed extra sleepy, but I didn't really give it to much thought. A nurse came in the next morning around 10am and asked if he had eaten yet, I said he hadn't and that I couldn't get him to wake up. She called the Doctor in to examine Russell. The next two minutes felt like an eternity as I watched the Doctor look over and measure everything on him. Then she pulled Russell gently by the arms and I saw his little head instantly flop backwards and I knew this was not normal. It was then that she sat down on my bed and told me she suspected my son had Down syndrome.

2. There are many things I know now about Down syndrome that I didnt know back then. One of the biggest things I learned was that Ds is NOT caused by anything the Mother did during pregnancy. I didn't know this before, I thought what had happened to Russell was my fault, something I had done wrong. Now I know it is caused by an error in cell division and it had nothing to do with me.
I thought people with Down syndrome never developed mentaly passed a certain age, I thought they could not understand or learn. I now know that this is very untrue. I know now that people with Down syndrome are More Alike Than Different, that they CAN, and DO, learn and understand.

3. I would tell a new Mother facing the diagnosis of Down syndrome that everything is going to be ok. That it is important to allow yourself time to grieve and be sad and even angry a little, and you don't need to feel guilty about having these feelings. But it is also important to move forward, to treat your child just like you would any other child. Life does go on, and not only that, but there is great joy and happiness, and raising a child with Down syndrome truly is a blessing in so many ways.

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Missy is Mommy to Violette. I found her blog, Yo Mamma Mamma! through another of my favorite online resources, Babycenter.com
Melissa is active on the Down syndrome boards there, and she provides a WEALTH of information about Ds both there and on her blog.

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1) I had been told at about 14 weeks that the results of my Ultrascreen were “Not good” by my perinatologist. I didn’t have an amnio, and found out for sure when Violette was delivered by my wonderful OB, who said “Missy, your baby is beautiful, and she is perfect, and she will bring you so much joy, and I’m quite certain she has Down syndrome.” My whole prenatal story can be found on my blog here: http://yomammamamma.blogspot.com/2010/01/little-history-of-my-pregnancy-with.html

2)I wish I had known how healthy Violette would be. I wish I had known how close she and my middle child Lilianne would be – I had felt so badly for Lilianne that she wasn’t going to get the “real sister” I had hoped for her. I was so wrong about that – Violette is the best friend Lilianne will ever have, and Lilianne is the best friend Violette will ever have. I had no idea that Violette would be so funny – on purpose. She is always teasing us, joking with us, and making us laugh. She has her moments, but all in all she is a very fun person to spend time with! Down syndrome is just a small part of her!


3)If you could give one piece of advice to a mom receiving a diagnosis of Ds for her baby- what would it be? Cry, mourn, wail, gnash your teeth. Get all that bad stuff and all those feelings out. Then talk to other moms who have kids with Down syndrome. Visit the Baby Center Down Syndrome Board. Join your local group and get active. All of those things, plus the wonderful things that are your baby, will get you to a point where you are rarely fearful or sad. For me it helped to set an end date for the sadness – I gave it 14 days, and then brushed myself off and became the best parent I could be for Violette.

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I met Laura's family through her big sister Ashley's blog, called Dear Laura... Love, Sissy
Ashely's blog was almost identical to my daughter Mackenzie's blog- they are both 18, they are both budding photographers, and they both started beautiful blogs about their incredible love for their little sisters. It is almost scary how alike our families are- we can't wait to meet in person some day!
I asked Laura's mommy Sherry to share her answers here...


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1)My daughter, Ashley, has a detailed post on her blog http://somethingbeautiful1025.blogspot.com/p/down-syndrome-diagnosis.html
which beautifully describes the day we found out that our baby might have Down syndrome.


2)There are so many things that I know now that I wish I would have known when I was pregnant. But, one of the main things I wish I would have known is that babies with Down syndrome are no different than any other baby except for the fact that they learn a little slower and their outward appearance is a little different. Things that I read on the internet while I was pregnant caused me to believe that my new baby would be completely different than my other babies...but she's not. She is perfect, and exactly who God intended her to be.

3)I would tell her not to worry or stress about her new baby having Down syndrome, and just to love and enjoy her pregnancy/baby. Doctors usually only give the negative side of having a baby with Down syndrome, and will tell you what your baby won't do instead of telling you all of the wonderful things that your baby WILL do!

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Melissa is Mommy to Claire at Moos Crossing. I remember the first time I saw little Claire (don't laugh, Melissa!) thinking "Who says babies with Ds all have thin hair?!" Claire has enough hair for all ten of my bald babies:)


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1) My quad screen test came back 'positive' with 1:80 results. We had a level II u/s at 18w and they found our baby had shortened arm and legs bones. Darren is 6 ft 3 in so this was a pretty big indicator for us. We declined an amnio, and had growth scans every 4w to keep an eye on her. At 29w weeks they found her heart defect and our odds increased to 1:2. Even though we technically didn't have a dx at this point we knew. I'd spent a lot of time on babycenter at this point so I felt as educated as I could be, but we also started preparing our family for the very real possibility that she would have ds.

2)What I wish I knew: I know that I love my girl totally and completely, and there is nothing that will change that! And that may sound silly, but there was a time I was worried that I just couldn't love a baby with Ds. That Ds would consume everything and that I wouldn't see HER! But now I rarely see Ds...that is a huge shift in a short amount of time

3)My one piece of advice would be to read blogs. While there is lots of information about ds online, the personal stories about our kids brought me more comfort (and accurate info) than almost any other site. And as a huge bonus, I now have a whole new family!

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Monica is John Michael's Mommy, and her blog Monkey Musings was one of the first blogs I started following. Monica immediately welcomed me to the Ds community, and I remember her warm greeting and congratulations on having Lily made me feel instantly that I belonged here.


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1)Moments after John Michael was born and taken to the NICU, my OB/Gyn told my husband and I the words we’ll never forget – “It looks like your baby has Down syndrome.” Those words changed our lives and our childrens’ lives forever, for the better.

2)I’ve always known that ALL babies are gifts from God, and this includes babies with Down syndrome! I wish I hadn’t wasted so many tears on being angry at God and sad at the diagnosis. I felt guilty for somehow making John Michael have Down syndrome, even though I’d read that it wasn’t anything I did. I now know that everything will be more than OK. We have the best friends EVER since John Michael has come into our lives. God has also used John Michael’s diagnosis to help me find my true purpose in life and it only took me 40 years to figure it out! I now have the courage to speak to people about Ds, to advocate for John Michael, to blog about raising my amazing little “Super Chromo Boy”, and to help new moms whose babies have Ds. I couldn’t have done that before he was born.

3)Be kind to yourself. In the beginning, you’ll have great days and some not-so-great days. Love your baby and take time to get to know him or her. All they need in the beginning is love, nourishment and a clean diaper. Don’t get bogged down with all the medical stuff on Down syndrome. Take time to read the book ­Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives edited by Kathryn Lynard Soper. It is by far the best book for new moms and is very uplifting. You will soon realize that when people say how blessed you are to have a child with Down syndrome, they are right!

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Stephanie at Daily Smiles truly makes me smile every time I stop by to see her delightful daughter, Em . I cannot help but leave that blog feeling totally encouraged and hopeful for Lily's future.

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1)When I was four months pregnant I was sent for a level 2 u/s, due to my advanced age. I was 39 at the time. During the u/s, they spotted an echogenic bowel on the baby. an echogenic bowel is not usually serious and in most cases it goes away on it's own, causing no issues. The big thing about an EB is, it is a soft marker for DS. But they can't give you a definite diagnosis with just that.So, I opted for the AFP Quad test. It came back positive. This test is not 100%, but it put me at a 1/2 chance of having a baby with Ds. I choose not to have any further testing. I knew in my heart at that point that Em would have Ds. You can read in more detail here, http://ourdailysmiles.blogspot.com/2010/10/31-for-21-my-first-post.html

2) I know that everything I thought, before Em was born, was WRONG! I know that people with Ds are amazing. I wish I knew what a gift I was being given. I wouldn't have wasted the last five months of my pregnancy worrying that MY life was over. I wish I knew how much I would love Em. I was worried I wouldn't love her like I love my other children. I wish I knew how proud I would be of her. Every little thing she accomplishes is HUGE in the world of Ds and worth celebrating. So basically, we party all the time now! I know now that Down syndrome is not something to shy away from, or be afraid of. People with Ds need our voices to help them raise awareness, and wipe out ignorance. I wish I didn't have to wait 39 years to recognize my own weaknesses and fears.

3)Oh Boy! I would say, Rejoice! Enjoy your pregnancy, you are about to be the happiest person in the world! You have no idea how good it's all going to be. Honest! Don't let the diagnosis determine how you feel about you baby. Remember this is still your baby. Just a sweet baby, who has an extra chromosome. And that extra chromosome bring a lot of extra GOOD things with it.

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Patsy is Maggie's Mom...and if you want to be blown away by some beautiful photography, go see her blog Miss Maggie Rae
I read her birth story and sobbed my eyes out...when her husband crawled into her hospital bed with her...and they cried the whole night through, waiting for a doctor to come confirm what nobody had told them, but what they knew in their hearts.
Such a different story today, though..who could NOT love this sweet little doll ?!!!

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1) We found out Miss Maggie's diagnosis at birth, which we feel was the best. My ob did offer the 'tests' @ 12 weeks and also the amnio at 20 weeks, but even though I was 38 I had not done any testing other than ultrasounds with any of my pregnancies. Jeff and I knew that we would not terminate the pregnancy, so we did not want to have the added risk of miscarriage that can come with an amnio. On our first of 3 ultrasounds our ob did inform us of a 'bright spot' on the babies heart which she said could be a marker for ds or just a calcium deposit. But she said there were no more markers so we should not worry. So we went home and googled 'bright spot on fetal heart' and out of like one hundred stories only 2 babies actually were born with ds but they also had other markers. So at 24 weeks we had another ultrasound and there were still no more markers...our ob said everything looked great. The femur measurements were normal...no club feet...no folds in the neck...the baby's heart looked great as did everything else. So we just knew everything was great, we continued to pray but felt we had no worries as far as ds went. Miss Maggie was born at 1:16 am and I knew as soon as they layed her on my chest. I saw those sweet little eyes that scared me to death at first..and now I think almond eyes are the most beautiful eyes I have ever seen. They took her for 7 hours to put her on oxygen and then the pediatrician came in to tell us that she had some markers of ds, but we already knew in from the moment I saw her. I did not need a blood test to confirm what I knew in my heart as a mother. But as far as everyone that says they want the amnio to be prepared....we feel our scenario was perfect. Because when I finally got to hold Miss Maggie some seven hours after she entered this world is when my fears just melted away. A sense of calm just came over my body as I looked into the eyes of this angel that was sent to us, and I feel if we had found out at 20 weeks we would have googled ds and probably read so much medical mumbo jumbo that would have scared us to death. But the day she was born my sweet sister was online for hours to find us an inspirational website and guess what she found for inspiration....a mother to a beautiful 3 year old little girl who just happened to have ds. But who also loved to dance and watch dora and things that we did not even know in those first few hours of Miss Maggie's life were an option in her future. We truly do feel so blessed to have gotten so much peace so quickly...but just hold Miss Maggie and look into those sweet little eyes and you will see why. To read more about her delivery... http://missmaggierae.blogspot.com/2010/05/our-magpies-birth-story.html

2) what do I wish I had known? Honestly... anything. I feel so silly that we knew so little about anyone or anything with any special needs. Neither jeff or I had ever been around anyone with ds. We were so naive. Specifically...I wish I had known how much Miss Maggie would light up our life. She has made everything better. She is teaching our whole family to love unconditionally. To see the world through rose colored glasses. And to take in every little thing, and truly appreciate every little miracle. How much happiness I would get from watching that sweet face smile and how she makes everyone around her smile. She is like this little ball of 'happy' and I feel so lucky that the Lord picked us to go on this journey.

3) One piece of advice? Just have faith. The Lord does not make mistakes. I know I may not have said this before we welcomed Miss Maggie, but now I can honestly say I would not change a thing. Because if you took away the ds you may also take away so many other wonderful things about our Magpie. People say all the time ' she is so lucky to have you for parents'... but no. We are the lucky ones. She is making all of our lives so much better. I do not know that you can really make someone see it with just words.... it is just something that is put in your heart ...through faith.

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Kelli is Colin's Mommy...and I don't even remember how I found her blog, Love For Colin but I do remember falling in love with her little guy there, and wishing we lived closer to set him up with Lily:) We do still have lots of family back in New Jersey, so... who knows...;)

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1) We found out about Colin's diagnosis moments after his birth. When they handed him to me, I had this feeling about his eyes, but it was not confirmed until his pediatrician told us that she was going to test him because she suspected Down syndrome. Although this may have happened 10 - 20 minutes after his birth, in our memories of the moments following Colin's birth, it felt as though they said "it's a boy! we are testing him for Down Syndrome!" Earlier on in the pregnancy we had been referred to a high risk doctor because they had found this "bright spot" (echogenic cardiac focus) on Colin's heart. after meeting with the doctor, he told us that this bright spot can be a marker for a Down Syndrome (in not so great bedside manner) but since the rest of the screening tests we had done and based on our ages, he did not think this would be the case. He gave us the option of an amniocentisis but it was so foreign to me and not something that I thought was necessary so I had dismissed it. After following up a month or so later, the bright spot had resolved so he pretty much dismissed us and the notion that Colin would have Down Syndrome. I knew Colin had Down Syndrome, even before the results were confirmed exactly a week later, to the day, after his birth. I could not stop looking at those beautiful eyes...the pediatrician had me calling to check in with her daily because Colin was not eating as much as they would have liked early on. The day the diagnosis was confirmed, I had called her office and she asked to see us at the end of the week. Since I knew what she was going to tell me, I asked her to tell me on the phone. She said to me "I received the results today from Colin's genetic tests and they confirm the diagnosis of Down Syndrome". I hung up the phone with her and cried harder than I have ever cried in my life.

2) I now know that DS is not about what children and adults with it can't do. My few experiences in life with people with DS were growing up in school and I can remember feeling bad because I thought there were so many things they couldn't do because of their diagnosis and I mostly thought they were related to the mental retardation that accompanied the diagnosis. However, one of the big things Colin has taught me so far about Down Syndrome is that it's not about what he can't do because he will do those things, with time, when he is ready. I wish I knew in those first few months that there are so many opportunities for people with Down Syndrome when people believe that they can do anything they set their minds to. I wish I knew that someone with DS could change my life in so many positive ways, unlike all of the negative things I originally thought. I wish I knew that having a child with Down Syndrome didn't automatically mean that they would never leave your home, that they would never be successful, that they would never do the things you had once hoped for...I wish I knew right away that anything was possible...

3) The one piece of advice that I would give a new Mommy after just having received a diagnosis of DS for their child is to love first and worry second. That diagnosis IS the unknown and it's scary (and still is 19 months later!) but your child will be everything you ever hoped for and more simply because you love them and you will do whatever it takes for them. I spent so much time worrying from day 1 about what Colin wasn't doing, or why he was doing what he was doing, or when he would accomplish something, or what would happen when he hit his 20s and became an adult...it has taken me a long time to realize that I just needed to slow down and simply love him. Whether you have a child with a diagnosis or not, worrying is natural. However, you just can't think about the future because you don't know what will happen. Things come up along the way that you face and move on to the next, and the same will happen when you hit the future...so just love that little baby with all that you have...
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SO there you have it...only 11 of the 30 something Ds blogs I follow...and I do hope to "interview" the rest of the mommies in the future.

If you have a blog and I am a follower- count on it- you have impacted my life. You helped me so much this year, and you showed me that we are going to be okay...more than okay.

And I am so very thankful for you.

And just as I was about to hit the "publish post" button, this comment came into my inbox:

Hi Patti! No, I do not have a blog about Benji. I am just now discovering this blog world. I know, I am in the dark ages I am sure. But somebody told me about these blogs because of Benji, and that is how I discovered yours. And I just read your birth story. Wow, it was so beautiful to read and right from your heart. Thank you for shining the light of the Lord out here in this blog world. Your family is precious. You can feel the love from the pictures. I am so thankful you blog because it is such an encouragement. You can really reach so many people this way and learn so much from others. The Lord has been using you to speak to me and you do not even know. He has confirmed things by what I have read from you and uplifted me and so much more. It is amazing how He is doing things in my heart right now as I see Him doing in yours. Very neat. He is so good!! Cara

So, now that I REALLY can't stop the tears, I think I will go kiss my Lilybird good night, and thank God for the billionth time for sending her to me:)

HAPPY THANKSGIVING!!!

Tuesday, November 23, 2010

The Ripple Effect

Dearest Lily,

This weekend I blogged about an issue that has been heavy on my heart...


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Reece's Rainbow is an organization dedicated to helping babies and children with Down Syndrome be adopted into loving homes. These children have been left in orphanages in other nations because of their diagnosis.

I received so many comments and emails from mamas like me who have a burden for these babies. Daddy and I did what we could to help, but it was a very small amount. This has been an incredibly difficult year for us financially. In spite of that, we are incredibly blessed... and we probably live more comfortably than most of the world.

I've heard it said that if you have a roof over your head and drive a car and have a job...you are better off than 95% of the world. Most of the world lives in conditions we Americans would think unbearable.

So maybe my little contribution to Melanie's family wasn't huge or grand, given the amount they need to raise. But it is what I can do. I hope to do more in the future.

I am so convicted at the thought of how much I have compared to others. I have been in a little bit of a funk lately because of the holidays, Lily. The list your brothers and sisters have just doesn't quite line up..actually at all line up...with what we have in the bank. And their lists aren't long..they're just multiplied by ten;)

But then I go to Reece's Rainbow- and those kids have nothing. Forget about presents- right now they barely have a shot at life.

I have this little thing called a site meter on your blog. Just a fun gadget that keeps track of how many visits you get each day. I have had no motive for gauging your readership other than the joy I get out of knowing your life might touch others in a profound way- like it has ours. And it is amazing how many people come here every day to read about your life.

I have recieved so many emails of Mamas due with babies who have Ds. Such sweet, kind emails, thanking me for being honest about our journey with you. Mamas who are maybe a little fearful, like I was, about their baby's future. I love that the internet has opened up opportunites for advocacy so easily.

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As I said in my last post- when I was pregnant with you, I googled "Down syndrome" so many times, my computer knew that a "D"meant Down syndrome was coming next.

I distinctly remember one evening just a few weeks before you were born. We had almost pushed the thought of Ds to the back burner in our thinking when your final echocardiagram came back clear. Ruling out the heart issue lowered your "odds" of having Ds significantly.

On Christmas Eve we were celebrating with friends..we had a houseful of guests, and the day had been spent eating and laughing and enjoying our company. There was a knock at the door, and one of your siblings answered it.

At the door was a friend of ours who I have mentioned before. Her daughter, Kari, attended our children's school for many years. Kari has Down syndrome.

Kari and her mom had come to drop off goodies for our family...and a book called Babies With Down Syndrome.

I remember the room kind of getting blurry, as tears formed in my eyes and I smiled and thanked Kari's mom for the book. She whispered that I might not even need her gift- she knew that we didn't think (at that point) that you had Ds. I hid the book from your siblings and talked for 20 minutes or so with Kari and her mom. After they left, I tried to engage in the celebratory mood in our home...but that little book was lying hidden in my room, and I couldn't get it out of my mind.

Later that night, when Daddy and the kids went to sleep, full of anticipation for the next day, I slipped the book out from under my bed and gingerly opened it..and gazed at each little face on the pages with tears streaming down my face. I kept my hand on my pregnant tummy as I read and thought about what our future might hold. When I read until I couldn't take it anymore, I decided to google "images of babies with Down syndrome." I just wanted to know what you might look like...I wanted some little piece of happiness to cling to, something other than the grim warnings of medical issues that are associated with Down syndrome.

I wish I would have thought to google blogs and Down syndrome. Looking back, what parent just happens to throw their baby's photo on the web for anyone to see, without the context of a blog or story?

I found a few photos of babies...but I wanted a face to put to Down syndrome- I wanted to see what Down syndrome looks like "in real life".

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Finally, I found a site that had a few stories of parents and their babies...it wasn't a blog, just some online forum. I saw a photo of a little girl- maybe 9 months old- who had Ds. She had the sweetest little smile, and button nose, and those beautiful almond eyes that are now so familiar to me. I stared at that image for so long, and felt more strongly than ever that I was staring at my baby girl's future.

The next day I found that site again and brought the computer to daddy.

"Isn't she beautiful?" I said smiling, and my voice broke.

"Why are you looking up random pictures of babies with Down syndrome?" Daddy asked.

I said I didn't know-that I didn't think it hurt to be a little prepared...just in case.

That sweet baby girl's image stayed firmly fixed in my mind in the days ahead. As we drew closer to your arrival, I began to think more and more about the possibility of you having Down syndrome.

Two nights before your birth, I got up to go to the bathroom...for probably the 3rd time that night:) and went to check on the kids, who were sleeping in the family room. As I passed through the room, covering little bodies with blankets that had been kicked aside, I distinctly had a thought come to my mind ...

"Lily has Down syndrome."

I stopped..stared at your siblings...and thought- I'm going to remember this moment later on. In fact, the impression was so strong in my mind, that I almost came to your blog to record it. But it was late at night, and I decided to just tuck that little "thought" away in my brain...to remember if I needed to.

Lily, I'm not claiming to be so spiritual. I don't normally walk around getting heavenly visions and having thoughts pop into my head and claiming them to be from the Lord. But it was like my mind was a big pond...and it felt like someone delicately but purposefully dropped a stone-a thought- into the middle of that pond...and I felt and knew that ripples of that dropped stone would result.

So why am I saying all of this today?

I want your beautiful face, your sweet and precious life to make a difference. I want people to come here - maybe Mamas who are deciding whether or not to give their unborn babies a chance at life- and see that life with Down syndrome is a beautiful thing.

I want people who have babies with Ds, or babies without Ds, or maybe even people who have no babies at all, to come here and see that babies with Ds - even ones hidden away in an orphanage somewhere -deserve life.

Maybe Melanie didn't get $20,000 dropped in her account because of this blog. Maybe our personal contribution was so little, that its ripple was hardly even felt.

But maybe over time, the more that we mamas in the Ds community keep blogging and keep raising awareness for Ds, maybe all of our little stones will cause bigger and bigger ripples, til lots of Melanies come home. I'm praying and believing God that we can have that kind of impact.

And you know what's amazing, dearest Lily? I didn't start off on this journey to be an advocate. I didn't intend to do anything other than create a place where I could get my emotions and thoughts out, and keep our family abreast of what was happening in my pregnancy.

But isn't it amazing how God can take our fears and grief and unknowns and struggles, and turn them into blessings for someone else?

Maybe those parents of that precious little girl I saw online last year, had no intentions of helping out a little 8 month pregnant Mama of ten. But they did.

And hopefully, this place we have here has helped and will help other mamas like me...and babies like Melanie.



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I'm praying for ripples upon ripples...

Love forever,

Mama oxox