Monday, October 3, 2011

31 for 21

As promised, I am contributing to raising awareness for Down Syndrome by participating in 

I will post every day during the month of October and link it back to Tricia over at unringingthebell. At the end of her post each day, there will be a link to stop by other's blogs and read their offerings for the month.
Did you know......
October is National Down Syndrome Awareness Month!! 
It's the month that in Times Square, pictures of our sweet kids will be shown on their jumbotron.
It's the month people all over will participate in a Buddy Walk
It's a great month to promote the National Down Syndrome Society!

Along with regular posts this month, I will post each day about our daily life. I don't have an agenda, I will just try and honestly tell our story through our regular days.

As in...
Today we overslept.
Why is it my lovely child will wake up on a Sunday morning at 6 a.m. and over sleep through her alarm going off at 6:40 a.m. on a school day?
(I just rolled over today and passed out again after turning off the alarm.)
Why is it my sweetest child doesn't see the need to run around like a chicken with her head cut off when she sleeps late and has less time to get ready for school?
God bless her for coming down in her favorite shirt and utterly wrinkled pants.
I thought we had come to an agreement that she would only wear her "favorite" shirts that advertise something on the weekend. You know, the beefy-t's that you get when you finish a sport, or get when you sign up for a 5k walk/run? Yeah. Those. The bane of my existence, the haute couture of my child's life.

I will say, the older I get, the more I'm letting go of the control freak nature.When one hears their child breathe a large sigh of relief in response to you not making her change her shirt,  one realizes there are many, many other battles in life that are far more important than what shirt your daughter wears to school that day.
like my all time favorite one (not.)

Which brings me to the point of my thoughts for the day.
I know blogs are supposed to be always light, funny, and happy.
But during this month, I'll be light, funny, happy and add a little reality as well, realizing that I risk exposing myself and showing all of you that I'm not perfect.
Wait, what?
You all ready knew that?

I feel like I am being watched. All the time.
Not in a creeper, someone-is-stalking-me kind of being watched,
but the feeling that every where I go with my Brenna, people are watching.
Probably the reason for me being anal about what she wears.

People look to me for interpreting her actions and words. Strangers look AT us more than I would like to admit. Lots of times they smile, once in a while they out and out stare. 
Some day I'll get the nerve to do something other than stare down the ones that stare at us.

 I might say in a kind voice, "did you have a question?" or, "is my wig not one straight?" Oooh. I know, how about, "WHAT? What are you looking at? My daughter's face or her t-shirt? I couldn't get her to wear anything else and I'm tired of TRYING. I'm encouraging her to be INDEPENDENT."
 Who knows. It will depend on the day. But I will try and couch it in niceness. 

Usually, at a restaurant, the waitstaff will look at me to interpret what Brenna just ordered. I look at Brenna and ask her to repeat what she said, as I figure there will be days she needs to make HER needs known and I won't be there. This is when she usually pulls the great, "I don't know" out of her hat and refuses to say what she wants. 
I used to fear she was embarrassed at having to repeat herself, but with every day advancing into the teen years, I think she really gets frustrated with people who don't understand her the first time and she'll be darned if she has to expend the energy to say her great words again. Don't worry. She does this to us at home as well. I call it the "Queen Bee" Syndrome.

Sometimes small children will stare. I'm not quite sure about this one. Brenna will usually mutter something under her breath and look a little perplexed. I will encourage her to give a smile back. Then, in a loud voice, she will ask, "What are they doing, Mom?" I've learned to reach into a repetoire of responses for Brenna, all the while withholding myself from reaching over and smacking sense into a stranger's child. I'm really good at multi-tasking.

When she was younger, and on a "typical" sports team, it felt like I was being watched for my reactions to Brenna's participation on the team. Part of this is my own neuroses that comes with raising a special needs child, part of it is truth.
Now, I hesitate to admit this. My posts go on Facebook, people I know and interact with will read this and I will hope I don't offend them. I write this to encourage other moms that put their kids into settings that make you, the mom, uncomfortable.
 Our kids learn by leaps and bounds while interacting with "typical" kids. It is an amazing phenomenon to watch children that will naturally help yours to participate. It melts you like chocolate in a hot pan. 
{It's good to refrain from running onto the field and smothering that child with hugs and kisses.}
I have had moms look over at me when Brenna made a basket with tears in their eyes and sheer joy on their faces. The ones that don't know us are searching to see who's kid IS this? 
I guess what I'm trying to say is that I'm not sure how to process so much emotion and still know that I'm "the only one" with a child such as mine on either team.

Now that she is older, we participate in Special Olympics, and at school, she enjoys herself immensely by being the water girl for the girls J.V. and Varsity Volleyball teams.  I can vouch for a fact that what we have learned in being able to put Brenna on a "typical" team has factored into our joy in watching her participate on a Special Olympics team as well as watch her perform her water girl duties.. She is a much more well rounded person for it and I'm thankful for the ability to have those times.
Silly me. 
I'm the one being shaped and molded, not her.
Some days I get it, some days, not so much.
Today was good.

More tomorrow...

If you would like to read about other's and their lives with children that happen to have Down Syndrome, please hop over to Tricia's blog HERE


  1. Thanks for sharing your sweet life. It touched me so. I cant imagine the challenges you face, but I do know that it takes a very special person to raise such a very special person :)It was no mistake she is in your family....

  2. Yes, thank you so much for sharing these thoughts on your life. It was touching and left me with tears in my eyes. I understand some of what you speak, because I had a sister with special needs. But, I'm not a parent, so that angle is a bit of a mystery to me. I think you shared this slice of your life very well. Thank you again.

  3. Thanks for your special words about your special child. It is very important for us to hear your perspective. Don't ever think we don't need to hear it.

    I appreciate you!

  4. Thanks for sharing this post as the mom that you are-very thoughtful and caring.

    It gives us a peak into your life which makes us get to know you better!


  5. This is a beautiful post, Lynn...I love learning more about your life!

  6. Lynn,
    I so appreciate your post. I appreciate you for sharing this with heart and door wide open with honesty. You inspire me. As a mom I thank you.

  7. Lynn,
    Such a beautiful post. Thanks for sharing your world in an honest way. I can only imagine the strength, courage, and patience that you bring to day to day living.
    xo~ Anna

  8. This is such a heartwarming post. I just want to thank you for sharing your world with us.. I am sure it's not easy. I can't wait to read more my friend..

    Hugs, Linda

  9. oh Lynn you put on your big girl britches for this post.
    Having this little view and understanding of your battles everyday is eye opening.
    You have a gift of love and patience.
    Two things that most people are lacking in life.
    My brother has two special needs children and I often wondered how he makes it thru a day.
    This post is such a great lesson for all.
    Thank you

  10. God chooses very special women to become mothers of special children. And in His Infinite Wisdom, usually equips that Mom with patience, tolerance and - most importantly - a good sense of humor!!! LOVE, LOVE, LOVE this post!!! Had a good chuckle over the choice of couture clothing!!! Someone once told me to win the war, the little battles don't count. And just for the record, there are some days when I want to wear a tutu and a tiara, but just don't have the confidence to pull them off!!!! Hugs, Terri xoxo