Monday, April 30, 2012

window into the future

Last month I ran a series of posts about the new prenatal tests that detect Down syndrome in the first trimester of pregnancy. Towards the end of the series I asked Elizabeth, from Confessions of the Chromosomally Enhanced to guest post for me about her older sister, Leanne. If you missed that post, I encourage you to go back and read it. I absolutely love getting a window into Lily's future by reading blogs like Elizabeth's, or Sarah's at My Name is Sarah...perhaps more than any other blogs I read, they show me that Down syndrome is a life worth living.

On a personal level, I am blessed to know another family who gives us that same glimpse into Lily's future. Years before we began homeschooling, our children went to a small private Christian school. During one of the parent meetings my husband introduced himself to another dad. We knew we lived in a small town, but experiences like this one always bring that reality closer to home...it turned out Mike owns the house we live in, and that Sam knew him through the construction industry as well. Mike and Laurie's daughter, Megan, was well loved by all of our children, and looking back I know that attending school with her was a godsend. Megan, as well as other classmates who shared her extra chromosome, taught my children firsthand that children with Down syndrome are more alike than different. 
 
When I gave birth to Lily, Mike and Laurie were one of the first in our community to reach out to us and offer encouragement and support. Laurie, as well as another mama from our children's school, each came to our home bearing gifts for Lily and books and information regarding Down syndrome. And imagine my surprise when Laurie told me that she and her husband actually co-founded the Willamette Valley Down Syndrome Association, a local support group for Corvallis and the surrounding areas. 

I asked Laurie to guest post for me today... as advocates I think it's so important that we bring awareness to the multiplied thousands of adults living with Down syndrome who are contributing to society in meaningful ways, as well as enjoying their own fulfilling lives. I'm looking forward to featuring other guest bloggers in the future, and if you are the parent of an adult living with Down syndrome, please contact me via email- I would love to share your story as well.

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By Laurie Moore

Laurie and her beautiful daughter, Megan

 
Megan's journey through life has closely paralleled the lives of our children born without Down syndrome...albeit Megan's experience has been more methodical, slightly unexpected and closely "measured."  She has used her strong internal motivation to work tirelessly for each milestone.  Using her God-given gifts, and the unconditional love of her family, she has built a beautiful life for herself.
 
She reminded me this morning that after this school year she will only have one year left in her post high school program.  Our school district provides a vocational, life skills classroom she can participate in until June of the year she turns 21.  As part of her schooling she's worked as a pre-school teaching assistant, at the USDA labeling plants and recording data, and at the local food bank organizing and shelving donations.  She volunteers at the humane society and also at a Day Center for the Elderly. Leaving the familiarity and safety of the classroom feels a bit intimidating for us but it energizes Megan.  In her words she looks forward to "having her own apartment....with a cat," "having a really good and fun job," and "having a boyfriend." 
 
 
 
Megan's life is busy and fulfilling.  She is an integral part of our family life and is responsible for all the same chores as her siblings (and complains occasionally....just like her siblings!).  She is extremely organized and tidy.  She remembers dates, names, places, and directions with precision.  Sometimes we call her our "walking calendar." 
 
Last Sunday we came home from church and I wasn't feeling well so I lay down to take a nap.  When I woke up I found the dishwasher unloaded, the dishes rinsed and put in the dishwasher, the table set for dinner, and a freshly made green salad.  She was sitting quietly in the living room reading a book when I exclaimed, "Wow, someone has been busy in the kitchen!"  She proudly replied, "It was me!  I'm the kitchen cleaning fairy!"
 
Megan loves all kinds of music (especially pop music on her iPod) and has been taking piano lessons for several years.  Right now she is preparing a hymn she plans to perform for our church's congregation.  She is the "Birthday Specialist" at church and announces the weekly birthdays and then sends each one a personalized card in the mail.
 
 
 
She is a member of a dance group for teens with special needs.  They perform at the county fair each summer and at various assisted living centers in our area.  She is a natural dancer and is proud of her "Hannah Montana moves!"  She started reading basic words in Kindergarten (using the Edmark program) and her love of reading continues.  She goes to the library each week and uses the online catalog to find her books, locates them and checks them out on her own. 
 
In her rare "free time" she loves all things Disney, manicures with friends, movies, and swimming.  She goes to a fitness class twice a week and swims twice a week.  Swimming is "her fave" and she's infamous for her fearless jumps off the high dive.
 
She dreams of the day when she can drive her own car, attend college, and be married.  We've had some tough, tearful discussions surrounding these dreams.  At her birth I questioned whether she'd know she had Down syndrome, or whether she'd recognize her differences.  By the time she was about 2 it was clear she would know, and by age 8 or 9 she'd describe a friend by saying, "he/she has Down syndrome like me."  Although this recognition can  sometimes feel like a "harsh reality" it has blessed all of our lives.  Some early "predictions" have come true for her; she has progressed through life with her own "unique spin," it does take longer for her to learn things, she will never be a math whiz or fly to the moon....However....she enhances the lives of all she meets. Every single accomplishment is an excuse for a celebration: she enjoys math and is a whiz with the calculator, and she loves flying in airplanes!
 
I still cry when I watch her baby videos or view her baby photos.  I see a young, apprehensive new mother who is trying to hide her pain with a smile.  I see a couple who is holding onto each other for dear life, wondering if they are in a bad dream.  The future is so uncertain.  There are so many unanswered questions.  How will we ever make it through this?  Can it really be 20 years later?  Yes, it can.  The positive changes that have occurred in us are nearly immeasurable. The beautiful dark haired healthy baby girl is now a beautiful blonde haired young woman.  She is strong, she is smart and most of all she is loved.
 
 
 

25 comments:

Mrs. K said...

What a whirlwind of activity this sweetheart lives. I got tired just reading all that Megan does. Even put me to shame, made me feel so lazy and selfish. Great article, so happy you asked Laurie to guest blog. Our Lils has a good role model in Megan.

Jenny said...

This was absolutely beautiful, I really enjoyed reading it. Megan is a beautiful young woman :)

Jennifer said...

LOVE this!! What a great post!! :) I love that our girls will have wonderful examples of strong young women with down syndrome - to grow up looking up to! :)

melissa said...

I'm crying at work over here! This is awesome. thanks for sharing!

Jennifer said...

Awesome story. Megan is such an inspiration to me. I can only hope that my kids will be as independent, successful and as happy as she is as they get older.

April Vernon said...

Thank you. Thank you. Thank you. Beautifully written. What an encouragement!

Leah said...

Megan is lovely. Thank you for sharing this!

Anna Theurer said...

What a beautiful post! Megan sounds as though she is busier than me! Thank you for sharing your story with us :)

Becca said...

Oh, this is an absolutely BEAUTIFUL post. And an amazing and beautiful young woman! Thank you for this today.

Btw, your header pic is absolutely STUNNING, Patti!!

Runningmama said...

This is AWESOME! Thanks so much to Patti and to Megan and Laurie :-)

Lisa said...

lovely post - I'm addicted to hearing stories of young adults with DS living their lives
She is beautiful - thanks Patti!

Rochelle said...

Great post, thank you for sharing their story with us.

EN said...

Thank you, Laurie. Megan is a blessing and she has undoubtedly opened your eyes to a wonderful new world. Thank you for sharing your perspective with us. Don't you wish everyone knew what we know?

Justine said...

Thank you! That was wonderfully encouraging!

Anonymous said...

What a wonderful story!

Becca said...

She sounds like an impressive young woman.

I'm confused about the 'tough and tearful' discussions!

There will be community colleges who run classes which are accessible to her, whatever her academic ability level is.

Whether or not she can learn to drive will be best found out with some driving lessons with a considerate and disability-aware instructor, off public roads at first. Many adults with DS do drive - again, this is governed by individual ability, not diagnosis.

There is no question that she has sufficient capacity (awareness of consequences of decisions) to marry, should she wish to.

cathy said...

simply beautiful young woman

xoxo
cathy

Maria said...

Patti~I found the link to this blog at Janie Fox talks (love her). I've been enjoying your other blog for awhile now but reading Lily's birth story here really blew me away. I am so moved by your honesty & your descriptions of the panic you experienced. As a one time sufferer of major panic attacks, so severe that 9 out of 10 times I'd end up in the ER, I just wanted to hug you & tell you how sorry I was that you had to go through that. They are so devastating & you're right when you said that no one understood & that you felt like you were going to die & no one would know. Chills. Thank God we both survived them. And it truly was my faith in God that got me through. Lily is so beautiful. Proof that love does indeed work miracles. I've told you before that you have an amazing, beautiful family. May God watch over all of you & continue to bless each & every one of you.
Much love,
Maria

my family said...

oh thank you for sharing....what a wonderful post

cara said...

Megan is beautiful!!! Thank you for sharing her with us.

Patti- what a blessing that you had people reach out to you right away when you had Lily. God is GOOD!!

Crystal said...

That is so beautiful!

Krista said...

So encouraging!

Krista said...

So encouraging!

Naomi Rice said...

Loved the post and LOVE the new header. SUCH a gorgeous picture!!!!

Liz said...

So wonderful, thank you for sharing your journey!