Saturday, October 8, 2011

new dreams

Dearest Lily,

 Happy October! This is one of my favorite months, because of the 31 for 21 campaign. So many other blogging mamas are participating by blogging every day during the month of October to raise awareness for Down syndrome. I love our blogging community, and I love getting new ideas for how to help you from other moms who have been at this longer than I have.

So two days ago I popped over to The Bates Motel, to see what your friend Sammi was up to.
Sammi is the cutest little girl, and she just started kindergarten this year. I clicked on the video her mama, Becca, had posted, and I was totally unprepared for what I saw...Sammi, who is five years old was reading.

Reading, dearest Lily, and I have tears streaming down my face all over again even now as I'm typing.

There are different things that every mama wrestles through, when her baby has Down syndrome. For some that might be the idea that their child might always live with them- or at least the idea that we will be very actively involved and responsible for our "adult children" some day. This has never ever bothered me- ask your brothers and sisters. I pretty much beg them to never move out, and when they do I beg them to come back home!

For others the thought of their child being different or being teased might be a source of struggle...still others might fear the medical issues that often accompany a diagnosis of Down syndrome. The point is- we all have our "demons", the things that haunt us from time to time, or threaten to rob us of the joy of raising our kids...if we let them.

And I've pretty much wrestled through a lot of those ugly demons since having you, and after going through the mental gymnastics again and again I really did come to a place where I decided I was going to stop worrying about the future and just put it in God's hands. Just like I do for all of my other kids. Because I'm not guaranteed anything for any of my children in this game we call life. The rules change, things happen, and we can make our plans, but ultimately there are no guarantees, so why worry about things that just might not turn out so bad after all? Wasted energy.


Except when it comes to this one fear.

And I hesitate to even say it here, because I hate sounding like a worrier. And it isn't really a worry, it's more a .... a nagging thought. Something that likes to dance around the edges of my brain when I'm talking to you and asking you to repeat a word, or imitate a sound. And you just smile at me, and cock your head to one side, and give me that adorable look that says , "I love you, and I know you want me to say something, but"     ...but there are no words.

And no words either to describe adequately the fear that tries to wrap itself around my heart, a cold wave that washes over me briefly, maybe a moment or two, when that awful, dagger-like thought comes to my mind:

What if Lily never talks?

Because I do understand that there are children- adults even- with Down syndrome, who are extremely non-verbal. And maybe they communicate through signs, or limited speech, but for the most part their world is a silent one, and although I know they are treasured and adored by their loved ones, there is nothing that cuts me to the heart more than that thought...because I want so very much to be able to talk with you, my sweet and precious Lily. I want us to share conversations, I want you to be able to tell me how you're feeling and what you want, and I want to be able to understand what you're going through, and the thought of my baby girl growing up and not talking to me about everything- just like all your brothers and sister do- scares me more than anything.

We're big talkers in our family, Lily...I'm sure you've noticed:) It's never quiet at out house, we are always in a discussion about something, and our dinner table is the liveliest place of all. We go around the table and share what the best part of our day was, we rehash funny things your brothers and sisters said during the day for Daddy, we talk about God and politics and homeschooling and the news and blogs and orphans and what music we like and what books we love...

Which brings me to my second little anxiety...which is reading. When I first blogged my way through some of the grief I was dealing with in those first days after your birth, one of the letters I wrote to you was called I Had a Dream. And I talked about how it hurt that some of those dreams were dying...ones of you having children some day, getting married, sharing your heart with me....and reading. And typing that out sounds so silly and little, because of all the things mothers face for their children that are "scary", not being able to read should probably rank right down there at the bottom of the list with "won't be able to ride a bike some day." I mean- children face cancer, face never walking, face a lot of things much worse than not being able to read... but there you have it. It was a dream, and just like all the other dreams that I really didn't want to let go, reading was something I wanted my baby girl to be able to do some day, and imagining she wouldn't just hurt.

Which brings me to this video. And while I know each child is different, and just like typical children, every person has their strengths, and I can't guarantee you'll be doing this by age five....I can still hope. I can hope, and I can pray, and I can expect not accept, and if a praying and determined mama has anything to do with it, you will, as your daddy likes to say, be blowing our minds some day.

*Thank you, Becca, for letting me post this video, and for challenging and inspiring me to help Lily read some day. And thank you, Sammi, for showing us it can be done.

So after wiping all the tears off my face, after watching that video, and emailing Sammi's mama and asking her how we go about teaching you how to read some day, I took 42 billion pictures of you doing what has now become one of your favorite pastimes....

Writing. You are obsessed with writing. As soon as you see a pen or pencil or crayon or marker lying on the floor, you scoot your little bottom over to it and swipe it right up (because you have almost given up on the army crawl, and taken to scooting everywhere sideways on your bottom...legs in front, pivot, scoot and swing the legs around front and repeat...I really must video this to post here, it's quite cute!)

No open book or piece of paper is safe from your artistic touch- you have colored on every surface within reach, including couches, floors and clothes, and yes, even your own face...

So you know what I think you're doing? Practicing....for your future book. Because once you've got this artistic thing down, you're not only going to be reading books, you're going to be writing and illustrating books, and I would not be surprised if Daddy and I have to take you on book signing tours some day, because girl, you've got talent!

And I've said it elsewhere, but I have new dreams for you, Lily. Dreams just like these, and the next time that ugly fear tries to wrap its hands around those dreams and choke the life out of them, I'm going to just laugh in its face!

And maybe watch that little video of your friend Sammi reading once or twice. Or forty two billion times.

It's late now, dearest Lilybird, the only time our house is quiet. But before I close, I just want you to know that I'm reaching for the future with faith-fueled prayers and a hope-filled heart. 

Love bears all things, believes all things, hopes all things, endures all things....Love never fails.
1 Corinthians 13:7,8

Always yours,

Mama oxox


P.S.  In ONE week, readers from this blog and Julia's have helped to add over $1,000 to Artem's grant fund on Reece's Rainbow.

If that doesn't make you want to shout, maybe you should check your pulse! Seriously, you people are amazing!!! We have 23 days left in this month to meet our goal- which is to raise Artem's grant to $10,000. All we're asking is for readers to donate five dollars.


What is five bucks? It's a Starbucks latte. A burger and fries. A magazine. A tip at a restaurant. 

A little boy's life.

Because five dollars multiplied by several hundred readers will literally save Artem's life.

I can't think of a better way to raise awareness for Down syndrome, then by ringing the bell loud and strong for one little boy, waiting thousands of miles away in an orphanage
for his mommy and daddy to claim him.  


Oh yes, and Lily wanted to add something...

 She worked really hard on this, so please pay attention...



Education: Exploring Online Learning said...

Beautiful artwork, Lilybird!

And I cried when I saw Sammi read, too.

Becca said...


Okay, can I just say how AMAZING it is that Lily's holding writing/drawing instruments and actually *drawing* with them???? Sammi's fine-motor skills were so poor until she was nearly 3 that we hardly ever got any kind of writing/drawing/scribbling out of her, and ohhhh, how badly I had wanted that. I know I'm saying what you already know, but our kids all do things differently at different times. Doesn't mean they won't do something if one of their peers does it first, they've just got their own agenda and have failed to copy us on it. :-)

cathy said...

Lily knows exactly what she is doing & will do it on HER & HIS time!!


Rachel said...

Beautiful! I never even thought to worry about reading! I'm so focused on speech right now...wondering...if the words will come. But be assured, I do hear her lovely voice telling me all kinds of things...and we do "talk" with our signing. It isn't the same as with my other girls, but there isn't much that gets left out...she's just doing it in a different way;)

mommyblog said...

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Mrs. K said...

Am loving ALL those pictures but there are 2 favorites, no 3 favorites here. The first is the one of Noah trying to kiss the Lilybird and her being so coy, the second is her full our laugh and the third is the one of her sleeping on the chair.

WOW Sammi, you go girl, that is so neat. Maybe when Sammi and Lils grow up they can go to libraries or bookstores and while Sammi is reading to the children Lils can draw pictures about the story. OK so I am getting ahead of myself! ;>)

Luke 11:9-10

kclinger said...

I am sobbing as I read about your sweet Lily. Thank you for sharing your blog with me! Blessings to you for all of the love you give...

Kelly Clinger

JC said...

I never know what to say on your posts, each one is so very beautiful and inspiring. All I can say is I love reading your letters to Lily...And I feel I am growing through them as well..If that makes sense. Thank you for sharing your thoughts and feelings Patti :)

lovemy3 said...

It is sad how quickly all of our "dreams" disappeared and how slowly we add new "dreams" back. I too worry about having conversations and her reading. I cried at Sammi reading too! I also cried this morning watching a little girl with DS practice soccer with her team. New dreams, new goals...the future is limitless!

Elisabeth said...

Reading and communicating have been my greatest fears with Wesley too. I'm so thankful, though, that God gives us grace for each day and asks us to trust Him for tomorrow. I pray that all of our kiddos will read and communicate beautifully with us as they grow up, but I also know that God will give us and them abundant grace even if they don't.

Leah said...

aww lovely drawings Lily!

Jennie said...

Patti, I was TERRIFIED that Micah wouldn't speak (especially with his feeding tube causing SUPER low strength in his facial muscles). But he's doing great! Lily will surprise you... she always does. :-)

mamazee said...

Loved finding this blog today - you have a beautiful family and are encouraging to me as a 38 year old mom pg with #8 :)

Anna Theurer said...

Patti, I am starting to believe that we all have similar fears. Ellie is over 2yo and still does not talk nor does she point. She has one word that she uses regularly--"mama" but it is paired with the sign for Dad and used only for Andrew. She has made two other sounds "ooh" for shoes and "oh" for go. It is inconsistent and it is often prompted. I am scared I will never understand Ellie. Anyway, thank you for sharing your fear with us. It helps to know that there is someone else out there with that same nagging thought.

Becky said...

I have always said and will continue to say dream big. I let Kristen set the limit and will push her until I see it. Kristen is four and a half and starting to read sight words in books. I am teaching phonics on top of that, and she is getting it. And, when you teach, you may not think they are getting it at first. But persist because it takes more time...more repeition, but they will get there if given the chance. In the past, kids with Down syndrome were not given the chance and this chance is what is making the difference in all our kids lives! By the way, Lily is adorable...and quite an artist! :)

cara said...

I think Lily will be talking much sooner than you may expect!!!! She is one smart, little girl. Love her.

cara said...

Oh, I had to correct myself- not that kids with down syndrome that do not talk are not smart because I know how smart they are!! But I think Lily will be a talker in your family!!

Esther said...

What an artist! And I love how encouraging your other children are. My boys are the same way. They are Adi's biggest cheerleaders!

gretchen said...

This is now my biggest fear too! Ah! It stinks....hang in there mama. If for some reason Lily communicates via non verbal ways that would sure be hard....ugh. and it would be another challenge to face. But, one day at a time right? Facing our fears and talking about them is the best way. And you know what? If that does happen, it will be OK. (this is me also talking to myself and rationalizeing with myself because of my own fear of the same thing). Kisses to Lily! Julian says hi.

The Harvin Family said...

I know your fear. I do. My daughter was diagnosed with a language disorder. She was in the 18% in expressive language. I cried and I cried. I couldn't get through a church service without crying! It broke my heart to think that I didn't know my daughter. I mean, I KNEW her but I didn't know what was going on inside that cute little head of hers. BROKE my heart. All I wanted was to have a conversation with my daughter. Guess what? Did you catch the WAS in the 18%? With LOTS of therapy she is now in the 44% in expressive language. I have had a conversation with my daughter! I still cry and cry and I still can't get through a church service but now I cry because prayers were answered in a powerful way. I just had to wait a little longer than some other mommies!
Love your precious Lily. She is adorable! And your blog has opened my heart and mind to many new things. Thank you!

Meriah said...

I'm catching up on a whole bunch of pots now!! This was fantastic. I too love Sammi - and Lily - and I love the artwork!