Tuesday, June 15, 2010

All that really matters..

Dearest Lily,

It happened for the first time last night.

My first encounter with wondering what people think about you. Up until this point I have been so consumed with loving you, and wanting to show you off to everyone, that I have never watched to "see" if anyone notices you have Down syndrome.

All of our friends and family already know. And when we're out and about, all I've ever heard people comment on is how cute you are. If anyone has ever observed that you have ds, they have never said anything.

Last night we were at someones house for a graduation party. You had a little bit of sunburn under your eyes, and it had faded to a light brown...it looks unnatural on a baby, so I kept explaining to everyone that Mama had put sunscreen everywhere but directly around your eyes. I didn't want you to rub it into your eyes and irritate them. You wore a big floppy hat and stayed for the most part under your canopy in your carseat while we were at a pool this weekend. But the pool water must have reflected up onto your little face and caused a slight burn.

So Mackenzie was holding you last night, and showing you off to the other teenagers. I don't know if it was the sunburn...or if this was the first time one of the teen boys had seen you...but he was staring open mouthed at you...and the look on his face made me rush over to Kenz and scoop you out of her arms. I mumbled something about her holding you all slouched over.

But the truth was, I didn't want to watch that boy staring at you anymore.

And honestly, I don't know what he was thinking. Maybe he was just looking at your sunburn. Maybe he was not really thinking about anything, maybe he just happened to have that look on his face when I glanced his way.

But at that moment, all I could think was- he is staring at Lily and wanting to know what a baby with Down syndrome looks like.

And I felt nauseous and protective and hurt, and I wanted to- God forgive me- slap that look off his face and leave that party and take you home with me, home to where you are loved and adored and accepted.

I have never felt such rage and indignation like that, and I honestly don't know if it was justified or not.

But it is making me wonder- will I feel that way again some day? Will I see a stranger gazing at you...with pity or curiosity, or some other undeserved emotion, and want to hurt them the way they're hurting me?

Because really, it will be me hurting. I hope with all my heart you will never be aware of some people's inadequacy to deal with people who are different.

Hopefully I will grow. Hopefully I will learn to toughen up a little..a lot... and learn to not care what others think. To focus on how many people love you, and are praying for you, and realize that some people are just ignorant. And some people don't mean you harm, they are just shallow.

God, help me to not care. Help me to forgive, and keep my heart right towards people, and to fight that instinct to retreat to the safety of seclusion.

I could be totally wrong about that boy. I hope I am.

My dear friend Denise told me about wanting to run people over with her daughter Jen's wheelchair the first few years of taking her out in public in it. She said these horrible thoughts would come to her mind, and it was everything she could do not to turn and stare back at those people and shout "What are you looking at?!" But one day- she doesn't even know when- she stopped noticing the looks. It wasn't until she looked back on that time, when she realized - people didn't change- she changed. She didn't care what people thought anymore. She didn't even think about what people were thinking. Jen was Jen, and people could think whatever they wanted.

I want to be there. I'm going to pray to get there.

You are so perfect to me, and I know deep down, it doesn't really matter what anybody thinks. You are beautiful and perfect, and you are our Lilybird.


And that's all that really matters.

Loving you forever,

Mama oxox


Kelly Marin said...

She is so precious Patty, I think your reaction is probably pretty normal. I was just at my niece's graduation and they had a senior graduating who had DS. She was the cutest blonde girl who very sedately walked with the other kids and when she went to get her diploma she skipped happily. I remember thinking how proud her parents must of been of her.

Keri Jo said...

She really is SO beautiful. I feel like I know her through the pictures and can't wait to "meet" her in person. My sister has 2 autistic boys and she gets the looks that she's bad mom and her kids are out of control and feels like she should explain her situation to them- but it wouldn't really matter since it's family and friends that will know and love them unconditionally. It has also been an eye opener for me too to see how much more a mom goes through with special needs children. I think a child can flourish anywhere they feel loved :) AND- I think I would've reacted the same way and even felt that when I was pregnant with #6- like there was a rejection from church people because I was "over the limit" in someones mind. I just had to realize in my heart that I want this baby so much and to love like it was my first or second child -so it didn't matter what others think.
- What beautiful advice from Denise- I always thought Jen was a sweetie. She loved holding Trevor and Alyssa when they were baby's.

Virginia (Jenny) said...

She is so, so cute! I know I say that everytime I comment but she is. :)

Susanna said...

I am feeling with you, Patti. I have an idea I will be fighting the same sort of battle inside myself in a few months. I was already taken aback when a friend scrutinized Verity's 3D ultrasound pic, and instead of telling me how adorable her SMILE was, said, "I can't see any signs of Down syndrome from that." I so want to be at that next level of graciousness already!

Jill said...

even though nate is only 2 1/2 years old, i am enjoying reading this kind of post ...one that i feel like i've experienced too, and blogged about as well(ha ha) and have come out on the other side of. maybe reading my similar experience will help you-but no matter what, never fear. you are never alone in how you feel and process information! keep blogging, keep loving that beautiful girl, keep smiling and sharing your story. you have so much to offer!