Tuesday, August 24, 2010

Expect, DON'T accept

Dearest Lily,

Today was a hard day for me.

If I were to come up with a statistic about how much I write here being positive versus how much I vent/grieve/complain/cry on my blog...I would make a conservative guess of 95% versus 5%. And most of that negative 5% comes from my pregnancy, when I was venting/crying/worried about the future. There has only been one post where I exclusively grieved..and although I shocked some of our friends and family with my raw journaling and emotions, I'm glad I did it.

Because, dearest Lily, this is our place. My letters to you are for you and for me... our joys, our sorrows, our triumphs, our setbacks, our fears, our victories...my letters to you are all about this big beautiful roller coaster called life. Because life IS a roller coaster. One day we're up, feeling like nothing can stop us, and we've got the devil on the run...and the next day we fall flat on our faces, and we wonder if we can make it another day. Through it all God helps me- guides me, challenges me, teaches me, picks me back up, loves me, encourages me...through it all He is faithful.

But that doesn't mean there aren't hard days. To pretend there aren't isn't real Christianity to me- it's dead religion. We live in a real world, where hard things happen, babies die, Mamas desert children, and awful things happen to good people. This isn't Heaven yet. And while we contend in prayer for good things, sometimes life just happens. God is good, and sometimes life is hard.

And in the big scheme of things, my life is not hard. I have a wonderful, loving husband, beautiful children, the house of my dreams in the country, in my favoritest place to live in the world, I have a relationship with GOD!!! How can I complain???

And yet...

And yet, dearest Lily, I have hard days. And it's not you- not ever you. It's just that I want so much for you. I want you to be able to do things like read and write and sing and play piano and anything else you want to do.

I want big things for you...that might not ever happen..like getting married...and living on your own.

I want things for you that won't ever happen. Like being a mommy.

I want little things for you. Like sitting up..clapping your hands...waving goodbye...saying I love you.

Is that so much to ask? Isn't that what every mommy wants for her little girl? I'm going to be honest, Lily. I have dreams for you that every normal mommy has and I don't want to let go of those dreams. I've had people- well-intentioned people- tell me happily about a 24 year old young man they know who has Down syndrome...and how he is happy as long as he has his favorite toys to play with.

God, help me...help me not to hurt anyone with these words...but I want more than that for you, Lily. I don't want my daughter playing with toys at 24 - I want you to have so much more. And I'm sure there are those who would say- but he's happy. And that is probably true. And in the very big scheme of things- famine, disease, war, etc. -being happy is a very good thing. But I just want to know that we are doing our absolute very best to give you the highest quality of life that we possibly can. And the rest is in God's hands. And maybe those parents gave that boy all that they could- and maybe him just being alive is a miracle in itself. Maybe he faced great health challenges as a baby, and just having him in their lives for 24 years is more than enough for them.

But what mommy wouldn't want for her daughter...what I want for you?

We had therapy today, you and I. Our therapist teaches me how to help you. The whole hour I am taking mental notes, watching everything she does with you, asking questions, relaying information about what you're doing...always trying to soak up every piece of information I can get about what will help you.

You've been irritable for a week now...fussy and wanting to be held all the time, crying in your car seat on trips, waking up at night. It could be teething- no little bumps so far, but you are gumming and gnawing on everything you put in your mouth. I took you to the doctor yesterday to rule out an ear infection. You've had goopy eyes for a few days, and a little bit of congestion. But your ears looked fine, and the doctor said you probably just had a little virus.

So consequently, therapy didn't go so well today. You didn't want to play, you cried and fussed and made the saddest faces every time Karen tried something new with you. And that was to be expected given your virus, etc.

I mentioned to Karen that the main thing I've noticed (among lots of other lags) that is different developmentally is that you have trouble bringing your hands up to reach for things. You reach for our faces, and if we hold toys in front of you, you will reach for them. But things that are out of your reach, you aren't interested in. You don't necessarily "initiate" play with objects. You suck on your toes, you chew on your hands..and as I said, you will play with something that we place directly in front of you. You even hold your own binky in now, and on occasion you have picked it up off the floor, and clumsily stuffed it back in your mouth.

But these movements are slow and methodical- not natural. It's as if you are telling your arms- move towards that object- and they are slowly, deliberately trying to respond. I asked Karen- is this muscle tone? We talked for awhile about this, and she said she is on the fence about it. She thinks you are very strong- you are pushing your chest up off the floor completely, and rolling over both ways, you are almost sitting up by yourself...

I asked what it would be if it is not muscle tone...and she said maybe a cognitive issue..she said she hoped not...but we would have to wait and see.

I asked hesitantly ...cognitive? Like...a brain issue? (Maybe I'm a little slow, Lily:) ) She said yes..but again, we don't know. She said it could be that you're just not completely aware of your surroundings, what's going on around you...just yet.

And floating around in my head are words like "mentally impaired" and "limited intelligence" and..."not all there."

Oh Lily, forgive me- I don't want you to struggle like this. I want you to be whole, I want you to understand things, to be smart, to be aware. Forgive me Lily- I don't want you to have Down syndrome.

I told you today was hard.

Most days I am fine. In fact, just about every day I am fine. And I think of all the blessings in my life, and all the wonderful things you are, and I am so so very much in love with you, my perfect little angel. It's not you. It's not ever you.

It's just today.

Tomorrow will be a new day, and tomorrow I'll wonder why I cried tonight. Tomorrow you'll surprise me with some new thing you're doing and you'll smile that million-watt smile that lights my days and makes me wonder did I ever love a baby this much?

Tonight I read an article on another blog about a girl with Down syndrome. I'm going to post it here, rather than link to it (and I hope I didn't just violate some copyright law.) Because tonight I'm owning this.

I'm not going to sit back and wait to see what you are able to do- I'm going to pray and believe God and read and learn and pray and work and love and pray and do ALL I CAN to help you be more than anyone expects for you. I am going to EXPECT NOT ACCEPT.

*And for anyone reading my blog- this author uses some profanity, so please excuse it.

I needed this tonight.


Paul Daugherty 2009 Keynote Address

Paul Daugherty delivered the keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center. Paul is a graduate of Washington and Lee University with a degree in journalism. He has worked in Baltimore, Norfolk, Va., and Dallas and is now a columnist for the Cincinnati Enquirer. He is an award-winning sports journalist and author and has been Ohio's Columnist of the Year seven times. Married with two children, Paul is also a dedicated husband and father who has been involved in disabilities advocacy for several years. Below is the text of Paul's keynote address, provided by Paul and posted with his permission.

Keynote Address

Thank you very very much for inviting me to speak to such a "remarkable" group of people. Life has given you a gift. If you don't realize that already, you will in time. I promise you.

My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

Ultimately, it's about giving your child the chance every other child gets.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

It hasn't been easy. Who said raising any child was easy? Kerry and I have blazed more trails than Daniel Boone. We have sat in countless meetings with teachers and administrators. We have spent countless nights and hours agonizing over homework assignments that were not modified for Jillian or overly dumbed-down for Jillian, you know, that kid with Down Syndrome. We have exhausted a lifetime's worth of patience in 12 short years.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

Don't put up Stop signs for my kid. Let her direct her own traffic. If you don't, we will be there, hauling you into a meeting, demanding for Jillian what you so freely offer every other kid: An honest chance. Let her tell you the height of the bar. Expect, don't accept.

Great strides are made when we remove the word No from our vocabularies, when we expand our thinking to account for the impossible. We went to the moon, didn't we? We eradicated polio, we can take pictures with a telephone. We elected an African-American president of the United States.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud. Give 'em hell. Don't let them tell you what your kid can do. Expect, don't accept.

Let me tell you some about the life of Jillian Daugherty, young and improving.

On the harshest emotional night, Jillian Phillips Daugherty couldn't wait to get out. The occasion of her birth was melancholy to everyone but her. Jillian loved being born. Her older brother Kelly had taken his sweet time. He slept late in the womb. Fourteen hours of labor before he emerged, wary and wailing. Jillian couldn't wait to see everybody. It took less than an hour. She came out like a watermelon seed between two fingers. Hel-lo world!

I think about this all the time now, whenever Jillian wakes up early on days she can sleep late, or hears me coming into the house and screams like it's 1955 and I'm Elvis. Jillian can't wait for the next moment, the next hour, the next chance to be Jillian. Jillian wasn't born 19 years ago. She was unleashed.

When she was a couple months old, she developed mucous in her chest and lungs so thick, she could barely breathe. Jillian was in the hospital 11 days and nearly to the point she needed a respirator. Then one more in a silent army of doctors poked her in the heel with yet another needle.

Ticked her off.

Jillian screamed so profoundly, it knocked the snot from her chest.

She's never stopped expressing herself. There was a time, many, many years ago, when I yelled at her for some transgression or another. Unfortunately, having Down Syndrome doesn't mean you won't spill apple juice or try to ride the dog like she's National Velvet.

Anyway, I'm airing Jillian out. During a pause in the action, she looks up and says, "Do you want a piece of me?"

My daughter is a piece of work.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Jillian would never ride a two-wheeler. That's what we heard. She wouldn't have the coordination. Even if she did, she wouldn't have the stamina. These Down kids, you know, they're fragile little people.

Many years ago, we got Jillian a bike with training wheels. She used it for a summer. Then the training wheels came off. For awhile, Jillian's wheels came off, too. It was like a guy in Nebraska, finding his sea legs.

Jillian, being Jillian, banged into this two-wheeled business with both feet. And both knees, both elbows and a forehead or two. We spent three months learning to ride the two-wheeler. It was like cracking a code or something. Every day, I'd drag poor Jillian out to the driveway we share with three other houses. I'd help her up, get her started and hold the back of her seat as she began pedaling.

For a month at least, Jillian ran that bike the way Mike Brown runs the Bengals. She'd sway and swerve and after about a 2-yard gain, crash.

We made progress, though, mainly because Jillian has a will like an I-beam. The kid never quit. The amazing thing was, she wasn't doing it so much for her as for me. She knew how much I wanted her to ride that two-wheeler. She saw how happy it made me when she managed a few more feet than the day before. My joy became hers.

Then one day, I pushed and ran alongside and... let go. Jillian kept going, to the end of the driveway, dread mixed with elation. "Dad, I'm doing it. Oh my gosh." She was off and riding. I was in the clouds. The last time Jillian and I went riding, we did 20 miles on the Loveland Bike Trail.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the ass. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

I remember in the weeks and months after Jillian was born, listening to a Bruce Springsteen song called Walk Like A Man. One of the lines was, "I was young and I didn't know what to do, when I saw your best steps stolen away from you; I'll do what I can. I'll walk like a man."

I was wrong about that. From the instant she appeared, Jillian has never lost a step. She doesn't get cheated, to use a baseball term. Jillian gets her hacks. We quickly got over the immediate emotions surrounding her birth. Jillian, happily, never got over being Jillian.

I see Jillian with different eyes. I love her with a different part of my heart. I can't help that. But I don't expect anything less from her. And I accept nothing less than all she has.

Life doesn't let us in on many secrets. One of them is, happiness comes to those who do the best with what they have. The more we struggle in our limited, human way, to make sense of things, the more we see that some things don't come with sense included. The best we can do is the best we can do.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

It's hard. It's damned hard. But we wouldn't be here today if we didn't believe, with everything we've got, that it's worth it. Expect, don't accept. Carry on and thank you again for the privilege of speaking to you today.

Copyright © 2010 Xavier University
3800 Victory Parkway Cincinnati, Ohio 45207 • 513 745-3000


EXPECT, don't accept. That's what I'm going to do.

Loving you more than ever,

Mama oxox


18 comments:

Ashley said...

Beautiful post, Patti. It's funny because I was just contemplating posting something on Laura's blog today. About her Down Syndrome. But you made me realize that these letters are from me to her, and that they should be honest. See, people have been noticing her down syndrome. We notice people taking second glances and stuff like that. It breaks my heart, because I expected this, but I'm having a hard time accepting it. I just want her life to be normal like you want Lily's to be normal. But I know I need to be honest with Laura. And I should write what I feel to her. I will be continuously praying for our sweet angels. Love you! No more tears :) Everything is going to be ok...

TheFoleyFive said...

what an amazing speech that must've been to hear. You make my heart ache. I can feel your struggle...we love you.
you are an amazing mother...truly.

Jennifer said...

Patti, I'm so full of emotions right now just having read your post, I love how you are able to be so honest about the every day struggles and ups & downs. I admire that so much. I know that with a wonderful Mommy like you Lily is going to thrive! Expect don't accept...awesome. Love,
Jenn

Lori said...

"You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept." I love this line in Paul Daugherty's speech. You and Sam are amazing people and parents, with amazing kids. I expect all of your kids to be amazing - they already are - and Lily will be just as amazing as the rest. I have no doubt! I love you Patti - you inspire me! You are the best sister-in-law on the planet!!

Kelli said...

[tears] thank you so much for sharing this...sometimes I need it to...

stephanie said...

Patti we all want the most for our kids. And I too don't want Emmie playing with toys at the age of 24. Unless she teaching little ones how to use them! i want the world for Em, just like you want for Lily. This speech came at the best time for me too. I needed to hear it yesterday.

and you know what? Our kids are going to be over the top OK!

We are on the right track we have God as our pilot and love and support of others. Times are changing, albeit slowly but in the right direction.

love and hugs!!!

Jenny said...

I love your blog because it is so real and so honest. I think so many of us are afraid to write what we really feel or struggle with because we are so afraid people will misunderstand and think we dont love our children, when that is not the case at all.
I have cried reading many of your posts because I have felt the same things...and it feels good to know other people have struggled with feelings I have had. So thank you for always writing from your heart and allowing others to read your beautiful words to your daughter.
I LOVED the speach you put up on here, what amazing words and just a wonderful story, I took alot from it...so thanks for posting it :)

Janet said...

I loved what you wrote followed by Paul's keynote address. Helped me get a tiny glimpse into
your heart, Baby Girl. thank you! Sorry to keep you up so late. . . .

Anne of Alamo said...

That darn human element and mom DNA is so real and tangible!!
You are so normal!! What mom who loves her child doesn't want all those things for her child! ??
Whoa to the ones who stand in the way of determination and perseverance.
And an added note to you Dear Lily, as these are letters to you! You better grab that determinations and perseverance too!! But I think that runs in your family!! ♥

Elissa said...

Patti-
I had this day yesterday too. I felt defeated, sad, scared and like I couldn't make this world fair for Abbie. I felt like I wasn't doing enough while all at the same time I was doing everything I could.

There are days when I picture my child doing all of the things that you described as wanting for Lily, and then, just like you, I realize some things just MAY not be possible. But after reading that post that you wrote as well as the additional post at the bottom, I just have to quit assuming anything. Maybe our little girls will do just everything we dream for them, they dream for themselves and things we cannot even imagine.

I don't personally know you, but I feel so lucky to have found your blog. :-)
-Elissa

Naomi Rice said...

Patti,
That was amazing... Lily will soar in life and you will be so proud whatever she does because we both know that each milestone is really something so much more.. We sometimes take for granted what babies do and each thing Lily does I want to proclaim it to the world!!! I love her so much... and your family. I am so lucky to be a part of you guys and so lucky to know Lily. She has changed my life.
Love, Naomi

Deanna said...

thank you for being so honest with this post. i have felt a lot of the same things with addison's future...glad to know that i am not the only one who has these days...i look forward how our kids are going to grow up and surprise the world!

when i was pregnant i would start crying about her future and say "she'll never__________" and my husband would say, "says who?" and encourage me to let her decide what she could and couldn't do instead of just assuming....loved the speech you reposted!

Danielle said...

lots and lots of tears. I read this aloud to my mom today on the phone and i couldn't make it though it. got all choked up. My heart hurts and aches for all the things you must go thru (and it's not fair to go through them alone. Make these hard times wait till Pastor gets home gosh darn it!)

The speech is inspiring. something you want every person to hold your child to - that higher standard. don't let anyone say she can't! I LIKE IT.

{{hugs}} love you lots!

Tara said...

I just wanted to speak to the reaching thing. I can't remember how old Eon was, but I do remember this was a huge concern for me at one point. He seemed to always keep his hands close to his body and was content with just his hands. I just want to encourage you that I barely remember that! He's 18mos-old and into EVERYTHING! He is very much a go-getter, taking independent steps (5-7), vrooming cars with his brothers, coloring pictures with his sisters, etc. We couldn't stop him from exploring his environment if we tried. Lily will get there, too! She is so bright-eyed and engaging, she will go very, very far!

Patti said...

Wow, Tara- thank you for that encouragement! It helps more than I can say:)

Kim said...

Love this post! I'm going to have to share Paul's words with others!
That's my new motto: Expect, don't accept!

Anne said...

Thank you for sharing this. I feel like we have been bullied into accepting lately - like our daughter won't nurse or drink from a bottle and to stop trying. However, our motto too is changing and we will be expecting rather than accepting. What perfect timing for our upcoming IFSP next month!
My dreams have definitely been changed, but then I am reminded that MY plans are not the ones that matter. Jeremiah 29:11 is a great reminder that He has plans for these little ones (and the mommas too).

Jessamy said...

Patti,
I came across your blog a couple weeks ago and have seriously enjoyed reading all about Lily and your family. I have just continued to read the stories and letters, and now I find myself reading posts from when Lily was just a little baby! I am 20 years old, and don't really have any experience or background of knowing anyone with down syndrome, but may I just say that your heart and your posts have inspired me and reminded me what is important in life. In this post when talking about a hard day, one of the things you listed in what you were thankful for was that you have a relationship with God. Amen to that. i think so often we forget that, but its seriously the most important thing. He gave us the life that we have. He gave us breath, and speech, and movement. He gave the ability to love, and grow, and learn. Also, reading posts from a while ago, and reading your current ones, I am encouraged to see the growth in your own heart as you have been learning, and it's also really cool to see how the things you were worried about with Lily seem to be minimal now, as she is walking and dancing, and learning to talk. I somehow have fallen in love with her and your family, which seems strange given that I don't know you, but it sounds like you have a lot of readers who feel the same way! Thanks for sharing so openly...your blog is a huge encouragement to me, especially when I'm feeling sorry for myself, or struggling with decisions God has asked me to make! My other random question is about Lily's therapist, Karen. I am in the process of figuring out what kind of career I might like, and I think Karen's job would really appeal to me! So, what is her official job title? :) I'm going to do some research!
Anyways, just wanted to encourage you, as I have been encouraged. I have a blog that I have just started, and we'll see how much I actually write on it, but it's www.thisleakingvessel.blogspot.com. I'm also on Instagram @jessamyfaith.

In Christ,

Jessamy

Isaiah 43:1- 7