WORLD DOWN SYNDROME DAY - March 21, 2011

Talk.

Ask.

Share.

If you have children talk to them about people with disabilities or people that may be perceived as "different." Teach acceptance, not just tolerance.

If you have questions, ask. We often avoid the elephant in the room. My daughter has Down syndrome. I did not know much about Down syndrome before I had her. I still don't. BUT I know about her. (She is AMAZING:) I welcome questions. It gives me an opportunity to advocate for her and shatter some of the misconceptions that exist.

Share what you know. If you know me or my daughter, share our story. Talk about Down syndrome, talk about people that may have unique challenges to overcome..someone in a wheel chair, blind or with cerebral palsy...there are so many disabilities that exist. Share. Share. Share. The more comfortable we are with something that is not typical, the more typical it becomes.

Today is World Down Syndrome Day. There are children all over the world who are not loved, valued or cared for because they were born with Down syndrome. There are children all over the world who at birth, are sent to orphanages, because unlike the United States (although we still have much to do in this country) children and people with disabilities are disregarded. To write this hurts, but it also fuels me to speak out, to share, to spread the word. We can make this WORLD better. (If you want to help go to reecesrainbow.org and make a donation)

Take a stand.

My daughter is growing up. Help me make this world a better place for her and others. Help me spread the word.

Our life is so much better and so much more beautiful, because of her...

My Cup Runneth Over...

The last time I posted my heart was heavy. A few days later the scale filled up and toppled over. All the great, wonderful and beautiful things in my life had, once again, filled my heart with joy and bubbled over.

At a Christmas party last year, while enjoying my 5th puff pastry with sausage, my girlfriend announced that she was putting together a 5K run to motivate us girls into a consistent exercise routine. Most of us really want to exercise, we realize how important it is to take care of ourselves. However, finding the time (and energy) in the midst of an already busy day is challenging.

She announced, "The Coach Potato 5K is planned for February 26th. This gives you 8 weeks to prepare!"

Friends. Friends are great gifts. They are the extras in life, that make it so much sweeter. On February, 26th 2011 about 20 of us runners showed up. In addition to the runners, we had several loved ones there for support. This looked like a real 5K event as Diondray set up the table for water and power bars. My girlfriends husband prepared the finish line and set himself up as the official timer. T-shirts were handed out. There were children with supportive posters. It was amazing. But it gets better......

Standing on a tree stump, to gather every one close, my girlfriend informed the participants that a $25 registration fee was being requested and the funds would be donated to the local Down syndrome Association. This was the bubbling over for me. This made me cry, smile, and tipped the scale for me.

Unlike the stormy weather they had predicted for the weekend, the sun was shining and it was a beautiful day.

I ran my first 5K in 29 minutes 45 seconds.

Then I collapsed :)

(overjoyed and exhausted)

Kamryn has Down syndrome.

We had an IFSP(Individualized Family Service Plan) meeting yesterday. This meeting is held every 6 months with our case worker and therapists to discuss Kamryn's development and determine her service needs. She receives services (speech and occupational therapy) from the state because she was born with a genetic condition.

The night before our meeting I wrote this, but did not post it..

My days are full and busy. Taking care of our girls, school, work, homework, after school activities, laundry, dinner, playtime, snuggle time, all the small things that we do every day add up to a full day. Then there are extras that get squeezed into the already busy routine. Doctors appointments, getting sick-this one throws us way off, PT, ST, IFSP meetings... Did I just say IFSP meetings like it is no big deal? This attitude (or is it acceptance ) has slowly emerged within me. Kamryn has Down syndrome. Period. No big deal.

Anything we do related to her having Down syndrome has become normal to us. The other day at the grocery store a lady approached me and asked if Kamryn had Down syndrome (Kamryn was sitting in the cart). I paused, looked at Kamryn, and thought how could this lady tell? I don't see "it" anymore (however, things, situations and people reminded me "it" is there). The lady was very nice and just genuinely curious, which for me is welcoming. I realized during most of my everyday life, I forget Kamryn has Down syndrome. She has Down syndrome, and it's no big deal.

Tomorrow we have IFSP meeting. I don't feel sad. I don't feel overwhelmed. I just had to add the meeting into the already busy and full day. I actually feel confident and strong.


WE HAD OUR IFSP MEETING.

I don't feel so strong and confident after all. My heart feels heavy. I don't want it to. I wish it didn't. I try to ignore the ache, but it is there.

This is forever.

All I keep thinking is this is forever.

We can't fix it, it won't go away. Kamryn has Down syndrome and it is forever.

What happened to my feeling of "it's no big deal?" How did that vanish all of the sudden? I realize that in the journey of life you get off track, you hit bumps, it's a natural part of the journey. I just don't like the bumps. Who does?

Today, my heart feels heavy. It frustrates me because I am living the most amazing, wonderful, beautiful life. If I took all the joys, love, wonderful, beautiful, great things in my life and placed them on one side of a scale and placed the few challenging, difficult and hard things on the other-the great things are so abundant that the scale would tip over.

So, why does my heart feel heavy? Why? When these few challenging things don't weigh more than a feather, why do they feel so heavy?

My heart feels heavy. But I know it will pass. And I know that with each bump, comes more strength. And more life.

Life is beautiful, even when if feels heavy.

Even with a heavy heart, I still smile. How can I not?!

Birthdays and Lots of Love...

I LOVE February. It is one of my favorite months (I do have a few favorites). I love to hang the wooden sign on my front door that says "WELCOME" painted in red, pink and white letters. It's my favorite for other reasons too...

Two birthdays. A day apart.

Birthday Morning.








Family Birthday Dinner











The Party! Last year Brynn asked for a Jump House and
pinata. It rained... this year the sun shined bright!
I made up for not be able to have a pinata last year!
Poor Kitty!


















Birthday Morning!













Birthday Dinner with Family-
Playing outside with Papa.



Waiting for dinner...






Birthday outfit from Auntie, hat from Grandma-
She ROCKS it!!!




After dinner show!




THE Slumber Party with Friends. A little basketball,
scavenger hunt, silly string fight and T-shirt designing.
I passed out about 11:30 pm...









Way to much flash, but we look like angles...My baby is 10!




These girls have birthdays a week apart! It would have been nice to space all of them a little better! :)