Tuesday, October 9, 2012

So Close...

So, it's Down Syndrome Awareness Month. October is the month that we bring awareness. We celebrate our kids. YAY! And for the most part, I do that. Every day on Facebook I've been posting cute baby pictures of Kennedy and sharing statistics and facts and I LOVE my daughter. Let's face it, she's a rock star. If you know anything about her, you know that she has overcome A LOT with a huge smile on her face and said, "Now what?!" She amazes me over and over.

But.

For one minute, I am going to step away from the yellow and blue pom poms and I'm going to whine. Just for a second. Because sometimes, having Down syndrome isn't fair. People ask me all the time if, given the choice, would I take it away from Kennedy. And I wouldn't. Because while I do not believe that Down syndrome defines her, it IS a part of who she is. If she were not born with Down syndrome, she wouldn't be HER.

But.

She also wouldn't have to work SO DANG HARD at every freaking thing she does EVERY single day. I watch her struggle in school... to read, to write, to keep up with her friends, and she's close. She's so close. And she's doing a GREAT job, but she knows she has to work twice as hard to do what everyone else is doing. And it's frustrating for her.

I listen to her when she comes home and says things like, "I was in PE, but I just. couldn't. do it." Her favorite class. She loves it. And I know her friends encourage her. And I'm sure she's close. And I want to tell her, "Baby, I can't make those baskets either." But sometimes that just doesn't make a difference.

I watch her struggle in dance. Something she LOVES more than anything else in the world. She wants to get it JUST right. She watches herself in the mirror. She practices in her room. Every day. And she's SO close. But she knows it's not quite perfect. She knows she's good, but maybe just not good enough. And sometimes, that hurts.

Sometimes I see my daughter through the eyes of the rest of the world. They see Down syndrome. And that's not fair. They want to put her in this box and say, "She can't." I see this beautiful, smart, amazing, self-confident, talented little girl who can do anything she sets her mind to. I have NO doubt about that. She has worked harder at everything every day of her 8 years of life than I have in my 33 years, and sometimes it's STILL not good enough and that just sucks. Some days it makes me want to scream. Often it makes me cry.

But.

I will brush the tears away. Like I always do. I will pick up my blue and yellow pom poms once again and I will pick Kennedy up from school in a little while. And when the "world" tells her that she's not good enough, that she's not smart enough, that she's SO close, but maybe not close enough, I will pull her tight and make sure she knows that she is always the VERY best Kennedy in the whole wide world and I'm so proud of her for working so much harder at life than anyone I know.


Happy Down Syndrome Awareness Month

16 comments :

Alice Fraggle said...

I love this post. :) Kennedy is adorable! :)
I have a question - hopefully it's not offensive - I certainly don't mean it that way...
Would you "take Down Syndrome" away from Kellsey? If you could "take" one diagnosis from her - which would it be? (Not that any diagnosis she has is "bad" - I hope you know what I mean!)

PS: I love the picture of Kennedy you included - she's a Diva for sure!

Kathy said...

She IS a rock star! I love her to bits. "knowing" her and your family has paved roads for many of us (or at least for me), who had children with Ds AFTER Kennedy.It's made things a little bit easier, or maybe just a little more expected. You have definitely raised awareness, not only among those who DON'T know people with Ds, but also for some of us who DO. I love your whole family! Chin up, mama. :) you are a rock star, too!

my family said...

aww renee now you have me crying, such a wonderful post from the heart.

ourjoyfulljourney said...

Totally made me cry! She is an amazing little girl and lucky to have you for her mom :)

Anne B. said...

Renee, Since I have followed Kennedy's carepage and now your blog, I want you to know that when I see someone with Down syndrome, I do NOT see the Down syndrome first and foremost. I see someone who has some physical characteristics of Down syndrome but I do not in any way allow that to influence my thoughts or expectations of that child or adult. You have taught me better!! So yes, chin up mama! You are getting an important message out there and I believe that Kennedy is paving the way to change the way "the world" sees her and others blessed with that extra chromosome!! You BOTH rock!!! (((HUGS)))!!!

Carolyn said...

I've been where you are! We worked so hard to get Wesley through school-it all paid off in the end. Two and a half hours of homework every night for twelve years...he graduated with a regular diploma. He loves his job...goes to work and comes home with a smile on his face. So much easier than school. You will get there too with Kennedy--I know you will! Carolyn

Monicas Mom Musings said...

Awww, but don't we all have those moments of not being good enough? I know it's completely different for Kennedy and of course you have people who are ignorant and see her disability and not that sparkle of determination in their eye, but I couldn't help but think you could be describing any one of my kids. Kaitlyn especially has a similar determination and a very clear struggle in reading and writing. And it's frustrating, but that determination she has to overcome anything is her strength. That's Kennedy's strength and I'm totally jealous of that determination.

Lynn said...

The Lord knows why He's allowing her to go through this! He WILL be with your family every second of every day!
Lifting up prayers!
Psalms 86:1-4 Bow down thine ear, O LORD, hear me: for I am poor and needy. Preserve my soul; for I am holy: O thou my God, save thy servant that trusteth in thee. Be merciful unto me, O Lord: for I cry unto thee daily. Rejoice the soul of thy servant: for unto thee, O Lord, do I lift up my soul.
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Holly Aytes said...

She is definitely a beautiful, talented girl! And she has a wonderful family that stands behind her and that is wonderful! I can't wait to see what Kennedy does in her life....I know it will be grand!

Emma Stormy said...

Kennedy is amazing and beautiful and so much more.....and she has the most awesome Mama ever! Such an inspirational family. Love you all!

Amanda Rice said...

I hope this doesnt come across rude, Im just wondering do you consider kellsey your daughter with DS to? You talk so highly of kennedy, my heart just wonders do you see the good in little kellsey, I do have to say you do an amazing job juggling so much

Michelle said...

Your post here is exactly why I've thought about becoming a spec. ed teacher.

JennaJennJenn said...

She is leaps and bounds ahead of a lot of other people because of her drive and determination. So many people have every advantage in the world but they waste it because they are happy doing just enough to get by. You can't teach someone to have Kennedy's attitude, either they have it or they don't and it is truly a gift. She has already inspired and taught so many people just by being her. I honestly do not see DS when I look at Kennedy anymore. Of course I know she has it but I notice her spunk first now. It comes through so clearly just in pictures of her, I can only imagine how strong it is in real life. She is an amazing little girl. You and Frank are amazing parents. All the hard work will pay off for Kennedy and she will go far in life, I just know it.

dottie said...

Iknew nothing about DS when I started reading your blog. What I have learned I learned from you and Kennedy.
I think Kennedy has succeeded so well because you and Frank did not consider her "handicapped" and you stood by her as she tried things and she was able to accomplish so much. She has been so determined to accomplish the things she wants to do. It seems her school work is her hardest thing. You have worked so hard to get her in the right classes, with right teachers. Her siblings treat her like one of them. You have given so much time to her learning all that she can. You are a special Mother. I could never not accept my child, no matter what they had when they were born. I can see Kennedy someday helping Kellsey learn the ropes of life.
You help so many, beyond your family, by answering questions,offering help,and being honest about things pertaining to DS. I doubt I would know anything if I had not been told to read your blog by one of my daughters.
That's how this 71 year old grandmother to 13 learned about DS. I thank you for teaching me so much and helping others along the way.

Lynn said...

Know that I'm praying!
1 Peter 1:18-19, 20 Forasmuch as ye know that ye were not redeemed with corruptible things, as silver and gold, from your vain conversation received by tradition from your fathers; But with the precious blood of Christ, as of a lamb without blemish and without spot (21) Who by him do believe in God, that raised him up from the dead, and gave him glory; that your faith and hope might be in God.
My email address

Shoeaddict said...

Such an amazing post. My heart breaks at the thought of her trying so hard and just not quite getting there. :( But, what an amazing little person she is!