Wednesday, November 10, 2010

Keeping it Simple

Dearest Lily,

This past weekend I was hit by what I call the ds bus. I've read about it other places, and wondered if it would happen to me.
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I was watching one of your little friend's videos...Mama is good friends with this baby's Mama. She is a beautiful, healthy, active baby, and doing everything a baby her age should. She is a month younger than you are.

And as I began to watch this baby move and reach for her doll... my heart began to sink. She moved so...normally. She laughed and smiled and turned her head up to look at her Mama, she reached for her baby doll, grabbed it and kissed it..and it hit me. You're not a normal baby.
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***this is your great-grandfather's dress- almost a hundred years old!!***

And wouldn't you think I'd know that? I've had ten babies. I know what a "normal" baby does at your age.

But lately, I've been so focused on what you are doing...what you're not doing sort of slipped by me. But watching that beautiful, very normal baby reminded me.
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And just when I thought I was past the shock, the ds bus hit me again. Tears welled up in my eyes, ugly sobs began...Noah came in the room and asked, "What, Mama? What?" I told him I was okay, go play, and Mama would be okay.

And I just picked you up and held you and cried for awhile.

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Cuz it's not just today that I was thinking about. It was your future. See, Mamas of babies with special needs have this incredible tendency (so I've learned) to project ourselves into the future. What will you be like 20 years from now? Will ds play a huge role in your life, will you be like any other 20 year old? Or will you still be a child...
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I texted your Uncle Chris Sunday...told him about my silly meltdown. I've told you before, Uncle is not exactly the epitome of tender-heartedness. He's a man's man, as he likes to call himself:) And he has quite the sarcastic sense of humor to boot. And you know what Mr.FBI guy himself texted back? I'll tell you...

"Pat (he knows I hate it when he calls me that instead of Patti!) take it easy, Lily has downs:)"

Uncle and I always joke around like this. When you got your shots he texted me OMG don't you know that causes downs?? or he'll randomly text me and ask how your downs is doing...or ask if you're down with that.

sooo....the rest of his text went like this...

"Anyway, it's hard for me to understand, I REALLY don't understand your emotions. Like you know there are kids w/o downs that have issues with NO REASON- that would bother me, that I would get. I'm always telling new parents not to compare their kids, u should know better?"

Yes. I should know better, Lily.

"Seriously, Pat (see what a brat he is?), it's not like she won't have thoughts, cares, emotions. But she won't have so many problems and issues that non-downs (NDs)people have. It's a wash. Lily has so much to look forward to, that's how I see it. Maybe I'm simple, but that's how I see it."

And Uncle's little eloquent text hit me. Like a bus. A non-ds bus:)
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I need to keep things simple.

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I need to quit worrying about the future, and realize that you and I have so much to look forward to! You are loved, and you are happy, and what more could anyone want in life? Isn't that what we're all striving for anyway?
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Loving my Lilybird to the moon and back,

Mama oxox

24 comments:

Ilisa Ailts said...

In tears, what a great post, and what a great uncle! I love that you have someone in your life like him. We all need that "brat" who can give it to us straight!

Cathy said...

Sounds like Miss Lily has a pretty loving and understanding extended family too. My Lily has an uncle that would lay it out for me like that too. Gotta love family...seriously...they often know just what to say and can say it in a way that isn't sugar-coated.

teal915 said...

That same bus hits me. And it seems like as soon as I feel settled in, it hits me again. I long for the day when it's not a bus anymore, maybe a beach ball instead. haha. We'll get there. I'm so glad I found your blog. Thanks a million.

Jenny said...

First of all...BEAUTIFUL pictures! What a sweet girl Lily is. And thank you for sharing this Patti, its always nice to know that bus hits other people too and not just me...although I wish it didnt hit any of us!!...sigh...The truth is our kids may have "simpler" lives than those around them...But they will have HAPPY lives, full of love and laughter :) And what more can you want than that really??

TheFoleyFive said...

As the mommy of that "normal baby" I loved this post. I was nervous and considered not reading it (to be perfectly honest) but it was beautiful (as always) Rea Monster is way advanced for her age...about 8 weeks ahead..I hope Reagan doesn't always serve as a reminder of where lily isn't...that would make me sad
:(
I loved your brothers very sage advice. ha. gotta love those guys.

love you guys so much!
xoxo
Soph

Uncle Chris said...

...oh, and Pat, I'm gonna have to start putting a disclaimer on my 'private' texts. Ingrate! (inside joke).

...but since we're sharing...I have had to struggle for close to 16 years with KWODS, I have six of them now (Kids WithOut Down Syndrome). Its not easy. Everyday is a struggle - "why isn't my 'normal' kid 'normal?'" and then it hits me, like a bus, a short bus, they are KWODS.

...but they are MY KWODS dernit!

Elisabeth said...

Lily is so beautiful! And, I love all the gorgeous headbands you put her in.

It's always hard for me when I'm reminded of all the things Wesley's not doing. And, of course, I tend to project out 20 years and start worrying about the future too. What a double whammy!

I always come back to the promise that the Lord made our children, and that he has a perfect plan for their lives.

And, as time goes by and I already have started facing things I thought I'd never be able to handle, I am reminded that God's grace is sufficient for each day. So, God's grace will be sufficient for us and for our kids 20 years from now too!

Race Bannon said...

...I would hardly call a person who graduated in the top 52% of their high school graduating class "a brat".

Lori said...

In the words of your daughter Abbi - in response to "happy lives, full of love and laughter" - "Great - Now we are all going to pray we have Downs' Syndrome!" Beautiful dress!!! The two last pictures are my favorites! Love you!

fckopp said...

OMGosh Patti, do you realize that is my father's dress that Lily is wearing? When he was little his parents dressed him as a girl...I think it is an old English custom, maybe just to dress all babies in dresses. Anyway, I gave it to you when Mackenzie was a baby as you were doing her room all in white. You put it in a basket on the floor with other white objects. I can't believe it is still wearable, you know with all the eyelet not being worn away.

Chris is so good at making a person feel silly for worrying and at the same time lift your spirits. I think most men are so "practical"." I know Daddy is so good at making me see the light at the end of the tunnel so to speak. He always will say "so how are these tears supposed to fix anything? It is what it is."

Men, gotta love 'em!!!

Brunner Family said...

LOVE the purple flower and darling dress. She is such a cutie pie!!!!! Your brother is a riot! Maybe he could start a business...we could text him our "meltdown issues" and he'll text us these great sarcastic comments for keepin it real...for a small fee!! haha...LOL.

nicole said...

Lily should be a Gap baby model. I love the last picture ~ she actually looks like a Lilybird! I'll have to say, she's "flown" into my heart.

I ran across this quote today, and just loved it and thought I would share it . . .

"Who except God can give you peace? Has the world ever been able to satisfy the heart?" - St. Gerard Majella

Suzie said...

Oh my goodness I am crying! My Lily is 11. Being part of the executive board of our Ds community I have told so many people not to compare their children to others especially typical children. But we do and we continue even when they are 11. I don't think it will stop.
I'm crying because you're right to worry, have fears and concerns. We do for all our children, but with a child w/special needs it is different. I worry about her safety and her future. It has been a hard year for me with thoughts of my Lily getting older.
I am trying to bring this around to something positive! (I've had a weepy week)
Your Lily will always be your Lily who is all about good and teaching others about life. You will always have those feeling, but you will see what your Lily grows into which will be something wonderful. And you will be able to do this life journey with her!
We are having a Ds conference around Mother's Day along with a self-advocate conference. The theme is based around "Yes We Can!" As self-advocates they will be able to accomplish and live their lives how they want and as mothers we will be able to have the strength, courage, and wisdom to raise this child from newborn to adult.
You will have days when you cry but I can gurantee that you will have many more days when you laugh, smile, feel amazingly proud, and are just happy. I mean happy like you have never felt before.
Sorry for rambling...

Katy said...

(((Patti))) I got behind on my blogging/reading the past few days, so I'm just now getting up to speed with your weekend/emotions/blog. I hope my e-mail yesterday wasn't too poorly timed. Thank you for the reminder to keep it simple. I am definitely finding that this whole journey is a day-at-a-time kind of deal. I'm glad that you have a brother who can, in his own way ;-), help you to cut to the core of the issue and maybe even help you get a little laugh in. ;-)

Patti said...

Suzie- my daughter, Abbi, asks me CONSTANTLY_ can we go read Lilyisms today??? We love your Lily!!

Denise said...

What a great post!! I think we all do have these moments. I always try to remind myself that Ella won't care what other people think of her nearly as much as the rest of us worry about it for her. And that is OUR problem, not hers. I think as confident as we are most of the time with the fact that our kids have Ds and that we are fine with it, there are always going to be moments where we will feel different and not want to feel different. I LOVE what your brother said to you. I cracked up out loud when I saw his comment though. First when he called you and "ingrate" and then secondly when he mentioned his KWODS. That is funny but he is so right, we will have issues and worries with ALL of our kids, they will just be different issues and worries. And lastly.....BEAUTIFUL PICTURES!!!!

Deanna said...

sorry you had a rough weekend.....i think we all still have days and realizations like that....and it's OK. it's part of the process, and it's part of what helps us be good moms....i also love that you have done some giveaways and such...so much fun!

loving all of the new pics of lily with the new camera....keep them coming. (-:

Ashley said...

I love this post, Patti! The pictures of Lily are beautiful. And your words are beautiful as well. Lily's future is BRIGHT! She is gorgeous, she is loved(by many), and she is God's child. He knows what her future holds. He will do her(and you) no wrong. Uncle Chris' words are beautiful! Go, Jersey Girl...I uh mean, Uncle Chris!
Love ya, Patti <3

Lori said...

I love your new pic in the heading of your blog - you both look so pretty!! I miss you!

Mandi said...

I adore your new header! Great photo.
I love her headband. Where do you get such cute ones?!
You don't know me other than by sight, so I hope you don't take this wrong. Some days I read your blog and the things that Lily is just accomplishing and I wish my Kindi would slow down too. Not that I wish for her to have ds, although after reading this I don't think I would be as afraid of it, but "normal" babies grow up so fast that it seems like you blink and you missed something new. I believe you mentioned something to this effect awhile back too, so I hope you are not offended.
I truly appreciate your blog and your honesty and often spend a lot of time with tears pouring down my face as I imagine how I would handle this journey. God Bless you and your family for being such wonderful people!!!

fckopp said...

Patti, I just came across this bit of wisdom and wanted to share it with you and the other mothers of ds children who read your blog:

The mysteries of God can make life seem as times as though we are "looking through a darkened glass." We question why certain things are, or why other things are not, but God simply asks us to trust Him. There must be uncertainties for there to be a need for "trust", so these very mysteries may be present to draw us closer to God. It is in this closeness that we experience Him and find our faith has increased.

Makes sense to me. Love ya Patticake.

Melissa M said...

That darn bus got me today too....

Anonymous said...

I came here from babycenter and just have to say what an adorable baby girl you have! :) I love your story about how you picked her name out. It really sounds like you were meant to have her in your life. Thanks for sharing your story!

I love the top santa hat for your giveaway! My favorite family tradition is reading the christmas story from the bible every christmas eve while we drink hot cocoa and eat cookies in our pj's. As we read the story we place each wiseman with their gift in front of our little manger scene. Afterwords we sing a christmas song or two. It's something I have done with my family since I was a little girl and am excited to have this tradition in my new family. I have an 18 month old baby girl and another baby due December 1st. :) My username on babycenter is lparsons08 and i'm on the december birth club. thanks! :)

Megan said...

I am from the Dec. birthboard from Babycenter. I want to thank you for sharing your beautiful daughter with me. She is so precious. As a mom who has worked with mentally disabled adults who have spent time in those institutions I must say we have come a long way. What my "friends" went through in those places should have never happened to anyone and am so glad to know that places like that no longer the norm and those like your little Lily will grown up happy and normal children. I am not interested in the giveaway (though the hats are too cute) learning about your precious little one is enough. Thank you for sharing.