Thursday, June 30, 2011

station break

While I sit here waiting (impatiently!) to make my little announcements about some special little angels on Reece's Rainbow, I thought I would pass the time by giving Lily's readers a special offer...


I am in love with these clippies from Blue Monster Bows on Etsy...



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Last week when Blue Monster offered a 15% discount to Lily's readers during our Five Hundred Followers Giveaway, I took advantage of it myself and bought Lily six new bows. Shipping was FAST- I had them just a few days after ordering. You know how you usually pick an outfit and then find a coordinating bow or hair accessory to go with it? Well, all this week I've been arranging the outfits around the bows:) I love how they really stay in her hair, and each one is sooo cute! And get this- Blue Monster has a huge assortment of bows like this one for- wait for it-





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...a dollar each! I took these sweet pics of Lily wearing her darling new bows and asked Blue Monster if they could extend the discount for Lily's readers a little bit longer...



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..and Etsy owner Laura graciously agreed. So please hurry and take advantage of this sweet deal- 15% off your entire purchase, just by using the code LILY15 at checkout.



Have fun shopping...and come back soon to see my exciting announcements!!! hehehe...

Wednesday, June 29, 2011

winners and secrets

This will be quick, because it's late and my pillow is calling me!

Random.org just drew the two winners from our very first Jack and Lily's Giveaway Wednesday... you can read below to find out who they are...

But before you do- I now have THREE very exciting little announcements to make in the days ahead. I can't wait!!!!! I have my blog posts on hold, and they are both going to be so good! One of them just might be able to be published today, so keep checking back :) I am so not into keeping secrets, but I just have to on these ones....but I'll give you a hint-

A shy little smile...

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A cute little pout....

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And a giant grin!

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That's all the hints for now:)

Here are the two winners of the adorable crocheted hair clippies- and thank you to all who shared your summer plans in the comment section, I loved reading them!

Team Lando said... No big plans - just day trips with ellie and matt, running, maybe a visit to williamsburg, learning more with my camera, and the pool. And I like giveaway weds, I just started giveaway monday!

Rachael said...I'm teaching swimming lessons at a special needs summer camp :) and I couldn't wish to be doing anything else. Oh, except maybe not studying for the Graduate Record Exam. yeah. :)
Avid reader of your blog, can't believe this is my first comment! I found you through Kelle's :)


Ladies, contact me with your addresses and I will get your goodies in the mail to you!


Stay tuned ........

Tuesday, June 28, 2011

Jack and Lily's Giveaway Wednesday

Dear friends,

If you're an avid blog reader like I am, you are familiar with the term Wordless Wednesdays. I've posted my own share of them, but I have to admit I really do love words...whether it's reading someone else's on a thought provoking post, or stringing mine together to try to convey my own thoughts. So going wordless on Wednesdays almost always makes me feel like something is missing~ like a really good cake without the frosting!

Therefore, I am boycotting Wordless Wednesdays and instituting my own little midweek tradition here for the summer months...


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Jack and Lily's Giveaway Wednesdays!

I've been accumulating a sweet stash of goodies for Lily's readers, and each Wednesday I'll be hosting a giveaway here...just our way of saying thank you for reading, and that we hope you keep coming back.


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I'm also verrrrry excited about two upcoming announcements...you do not want to miss either one of these! I have two blog posts on hold, and as soon as I get the go ahead, I'm going to hit publish faster than you can say "My Family Found Me!" Stay tuned!

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So what do Jack and Lily have to do with this giveaway? Nothing. I just had to tie in these cute photos somehow~ so what better way to do that than to name the giveaway after them? ha.

Today's giveaway is for this darling hairclip made by my wonderful friend, Cassie...

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Two lucky commenters will each win one of these super soft clippies, just by leaving a comment telling me what your summer plans are.... and if you don't have any fun plans, then leave a comment telling me what you wish you were doing. (camping, swimming, Maui...)


Happy Wednesday!

no regrets

Dearest Lily,

There are moments of every day when it hits me how my fears of the past had very little to do with reality, and everything to do with how unfamiliar I was with Down syndrome.

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Just today it really dawned on me how there is such a natural relationship between you and your brothers and sisters, and how at one time I thought that would be hindered because of that extra chromosome. I really didn't have a clue how things were going to play out over time... but here we are almost a year and a half into this thing and I'm realizing that there is no difference between the way you interact with your siblings and the way any of our "typical" children interacted with each other.

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There is give and take, there are funny moments, happy moments, sad moments...you adore each other and laugh with each other and sometimes you even get on each other's nerves. You play favorites sometimes, preferring to be held by your younger sister, while snubbing your older sister, or you reach for one brother while another one is trying to snuggle you.

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You share your toys nicely most of the time, but you also like to swipe the forbidden ones away...like crucial pieces to a game of Risk right when someone is about to win...and you like to army crawl over as fast as you can to bang on the keyboard if anyone is trying to send an email from their laptop...or write a blog post...


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You are so doted on and entertained, and the main argument I find myself having to break up is whose turn it is to hold you! Each of your brothers and sisters, from the oldest to the youngest, takes turns doing therapy with you- which is really just playing games with you to help you to learn. Jackson loves to do flashcards with you, and he's so good at congratulating you when you get them right...

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This afternoon our neighbor friend, Ari, came over to play. A little while after he got here, he wanted to know if Jackson could come over to his backyard to see his fort. I didn't have time to go with him, and Jack is too little to go by himself....nobody can turn the tears on like your brother, and he tried his hardest to use those tears to change my mind about letting him go with Ari. When he lost that battle, he quickly turned to his greatest ally for sympathy...

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The look of concern on your face was so priceless. You reached your tiny arms out to comfort him and buried your sympathetic little face in his chest, while he cried out his woes to you.

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It took all of five seconds for Jackson's tears to dissolve, and then he was grinning and telling me to "take a picture of me and Lils, Mama!"

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I remember the day you were born, wondering how we were going to tell your brothers and sisters you had Down syndrome, without breaking their hearts. I just wanted them to love you and accept you and not worry about anything....I wanted so much for life to be "normal" for them, with no regrets about who you were.

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I'd be lying if I said there wasn't initial shock when we told them who it was God had given us, shortly after you were born. But you know what I've found? Kids are resilient- they almost instinctively know that one little chromosome does not change love, and just like Jackson's little episode today, it took all of about five seconds for them to wipe their tears and move on. There is such a bond between you and your siblings, and as crazy as it sounds, it is almost stronger than the one they share with each other. Maybe it's because they love you so much and want to protect you from any hurts that might come in life, or maybe it's just because you're so darn loveable, but one thing I know- you will always, always be surrounded by siblings who adore you.


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Loving you always,

Mama oxox

Saturday, June 25, 2011

summer camp

Dearest Lily,

There are suitcases piled in the living room, and bags of food, paper plates and marshmallow sticks lining my counters. It sort of looks like a bomb just went off in our house, but actually... we just got home from three days of camping. It was only ten minutes outside of town, and wasn't "real" camping- just a cabin and our pop-up trailer at the KOA. But with Daddy and your older brother and sister working, it's the easiest way to squeeze in a vacation for all of us during the summer. Over the years we've developed a pretty decent system for getting packed and unloading at the campsite, and thankfully you are very good at going with the flow.


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You were a happy little camper the whole time, playing on a blanket in the sun and taking your afternoon naps in the cool of the cabin. You ate bite-sized pieces of whatever we ate- burgers, sandwiches, bacon-egg-and-cheese biscuits and s'mores. And lots of ritz crackers. And grass. And dirt.


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That tell-tale sign of putting everything in your mouth had me checking your gums for any red swollen bumps..sure enough you're working on not one but two molars on the bottom, and a top tooth right in the front. Thank God for tylenol, because for the most part it kept teething troubles at bay.

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You did have that annoying nasal drip that so often accompanies teething, and you're a little drama queen when it comes to having your nose wiped. Complete and utter meltdowns every.single.time.

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I don't know why the grass was so fascinating to you, but you just kept ripping out handfuls and either sticking it in your mouth or throwing it down and starting over again. You would stare at each handful like you'd never seen anything so mesmerizing. I brought your favorite toys, but I'm pretty sure you would have been totally satisfied to just sit and play with the dirt and grass.


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Well, maybe not.

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Your brothers and sisters must have walked up the gravel road twenty times a day to the little KOA general store. Lily, honestly- you would think we never stepped foot in a store before, the way your siblings talk about this little place that makes a fortune off of ill-prepared campers who forgot toothpaste or plastic cups or ran out of milk (not that we would know). For some reason it has all the allure of a department store at Christmas time- and I'm pretty sure they see dollar signs when our family pulls into the parking lot. I lost count of how many items your brothers and sisters purchased in three short days...Izzies drinks, popsicles, candy bars, lollipops...and it's not like we didn't come loaded with food and snacks. There is just something thrilling to them about spending their hard earned money on a food item, even if they paid three times what it's worth.

Somehow you convinced your brother Noah to share his treat from the store with you...

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I think you forgot you two were sharing.

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It's late now, and you're sleeping soundly in your bed next to me, your tiny shoulders a fragile shade of sun-kissed pink. We're all pretty tired, but in that good post-vacation kind of tiredness, and even though I love to get away for a little bit, it is so nice to be home in our own beds.
I have to say, there is something rewarding for me about pulling off camping with a family our size. The bags are unpacked (for the most part) the laundry is caught up (sort of) and our kids have happy memories tucked away, to be pulled out and savored over the years. They rank right up there with Disneyland in your siblings' way of thinking, and I have a feeling they will for you some day as well.

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Sweet dreams,

Mama oxox

Wednesday, June 22, 2011

stop the bus

Dear Lily,

There's a crazy thing that happens to a parent of a child with special needs. And it's not that I never experienced it before as a parent of a "typical" child- after all, you have 9 older brothers and sisters. It's just that it's magnified. Like a billion times.

And every time it creeps into my thinking, like a tiny sliver under the skin, pricking at first but threatening to turn into a throbbing, hurting wound if left untended...I have to tear it out. Deliberately, immediately, stop the downward spiral of pain that will inevitably continue without a conscious effort to end it.


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It's the comparison bus. And if I had a dollar for every time it tried to hit me, aimed straight for my heart at lightning speed, unwavering in its path ....I'd be a very rich mama.


And Lily, the hard part is- I never see it coming.


Because honestly, we're way past the grief thing in this journey called Down syndrome. It's been many, many months since I cried any tears over your diagnosis. And honestly, you amaze me every day with what you can do, and those milestones you're reaching really - truly- flat out astound me. I must ask your daddy a hundred times a day- seriously- can you believe how smart she is? I'm soaking up every little moment, and learning to expect not accept has gotten so much easier...you've made it easier, because you really have taught us that even if we didn't quote that little mantra to ourselves daily, you'd be proving to us that there's a whole lot more can-do in that extra chromosome then we thought. But sometimes...


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Sometimes I read somewhere about a baby who is exactly the same age as you, possessing that same extra chromosome...doing things or saying things that you're nowhere near doing or saying...and the bus hits. Doesn't just threaten to hit, but slams full force into my otherwise terrific view of "life with special needs" and has me asking all the painful questions again...

What if?


What if these delays aren't just delays, but are road signs, pointing to a future of serious cognitive limitations?

What if you aren't ever able to communicate effectively, and in spite all of our efforts to help you speak some day...you don't.

What if, in my effort to be the very best mommy for you that I can, reading everything I can get my hands on to help you, gleaning from other parents and therapists and trusted sources, I am not doing enough- and you suffer for it.


And Lily- I never asked these questions with your brothers and sisters. Sure, I had times when I compared what one of them was or wasn't doing with another child their age, and made mental notes to focus more on fine motor skills or eating healthier or reading more...but I never felt the weight of what those efforts might mean for their futures, never questioned that at some point they would eventually "get it" and I could relax and know that my child was going to be okay.


We've had late talkers and late walkers, we've seen both ends of the spectrum as far as when our children crawled or climbed or strung words together...but this comparison game never had such deadly stakes, never meant the difference between doing fine and drowning in despair.

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But the great thing about walking out this parenting-special-needs-thing ? It does get easier. Because this time when I watched that baby perfectly sign to his mama what he wanted, eyes locked on hers and clearly saying "music" with his hands, this time when I read those words, "she says baby" and knew that little accomplishment was probably light years away from where you are right now...


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This time...I stopped the bus.

Because you know what I've found, dearest Lily? It's just an illusion. That dark phantom, barreling down the highway of my mind, ready to knock me off guard again, sending me careening wildly to the place of grief I thought I recovered from long ago? It's just a mirage. It has no more hold over me than I will let it, and with the flick of a little switch in my brain called will, combined with a sucker punch of faith - it's gone.

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I truly do have power over my fears and my faith and those inevitable what-ifs. I can choose to dwell on them and allow them to torment me and rob me of what-is, or I can turn them off and realize that at some point you are going to be who God made you to be. Will I strive to do better if I feel I'm not giving you all the tools you need to grow and learn and develop well? Absolutely. But torture myself by analyzing every little detail of what we're doing to help you, from how many hours a day I spend on therapy, to what type of vitamin regimen we put you on? Not going to go there. I am going to allow healthy introspection and honest assessment of our parenting skills, but I refuse to live my life worrying about the future, and what it holds for you. I'm not going to scrutinize every little milestone- missed or celebrated- to try to judge what lies ahead.

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Because in the end, you are happy and you are loved and you are my Lily, and I don't want to miss one single beautiful moment of who you are today by grasping at who I hope you become.

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Finally brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:8


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Loving my perfect Lily,

Mama oxox

one year ago

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