Quilt

Tuesday, April 12, 2011

Philippians 4:13

If a picture is worth a thousand words, I think the pictures in this post are priceless.

I took them a few months ago at the start of Owen's journey crawling -- Since then, I have shared them with my mom, who shared them with her prayer group at work, and it seems they have touched others as well, so I thought I would pass them on to you :)

Never did I imagine the beauty that the images would hold...


At first glance, these pictures brought me mixed emotions...

No one likes to watch anyone struggle, much less a baby, much less their own child. I have to admit, sometimes I get frustrated at the grip Down syndrome has on my baby. I get frustrated that Owen has to struggle so much just to get by. He didn't 'choose' to have Down syndrome. There was nothing we did to 'cause' it. It's not 'fair' that he has to work twice as hard all the time...

In the world of Down syndrome, there is no denying that even play time can become 'work'. In these pictures Owen was 'working' SO hard to reach his toy. You can literally feel his blood, sweat, and tears pouring out of the images. Owen has an enormous disadvantage. Everyday, his genetic makeup makes seemingly insignificant tasks a challenge. Everayday things, that most of us take for granted, like learning to move, are inherently difficult for him.

My first glance at these pictures was fleeting...

I can't help but linger at the true beauty behind the images, and the gift they are, that Owen is, to us all. You see, Owen is determined. Our Owen has been a fighter since the day he was born -- Owen doesn't make excuses, and he doesn't quit; Owen lets NOTHING get in his way.

I think of Owen's fight on a daily basis. I marvel at his fortitude -- at his fierce determination -- at his inner strength. He is only 8 months old, and his persistance and percerverance constantly amaze me. Owen embraces life, and ALL that God has given him -- and he serves as a beautiful reminder for all of us.

To pass on our little blessing -- next time you get tired, or feel depressed, or feel challenged by the day God has given you, or the circumstances at hand, think of Owen, and his fight. Owen is a very real reminder that every day is a blessing regardless of your life's circumstances, and that God is with you ALWAYS.

TRIUMPH!



"I can do all things through Christ who gives me strength"


Philippians 4:13

Monday, February 14, 2011

Advocacy and Awareness

Thinking Out loud:

I would never wish Down syndrome on anyone, but I would wish Down sydnrome on EVERYONE!

I know what you are thinking... What?? Well, It's true. While I wouldn't want anyone to worry about the different medical and developmental obstacles that our kids sometimes face, I would wish, with all my heart, that EVERYONE could know the undeniable and indescribable JOY and blessings our kids pour on us.

Sadly, however, there are many terrible misconceptions about DS out there... and even more sad is the lack of awareness of DS in general. Just today I came across an unfortunate example of how blissfully ignorant some people can be. Today I was approached by an older man in the checkout lane at the grocery store. He came up behind our basket and started tickling Owen's feet. "Is there something wrong with him?", the man said, "The face, is that normal?". You can imagine the many emotions that flooded over me in that moment. My "mama claws" came out, and my gut reaction was to put that man in his place. I wanted nothing more than to raise my voice and lay into him, "How dare you?!", or "Are you kidding me?!", or "What's wrong with YOU?!"... My gut reaction was angry and resentful. Thankfully, God gave me enough grace to keep my mouth shut and walk away.

In the end, I ultimately decided on taking the high road to set the example for my son, Will, who was also in the shopping cart at the time; but as soon as I made it into the car, I began to cry. I cried for Owen, that he would have to face such adversity at such a young age. I cried for Will, because I knew that he would one day face the same situation and I wouldn't be able to take the brunt of it all. I cried because I didn't handle myself well, I cried because I knew the way I had reacted wasn't going to teach Will how to handle the situation in the future. Mostly I cried because the way I reacted wasn't going to change anything.

I am so thankful I married such a wise man, because it wasn't until this evening, after talking with the hubby, that my epiphany came...

Perhaps it's the teacher inside of me, but I feel like I dropped the ball on this whole situation. My job this afternoon was not to get angry or to be resentful at this man's unfortunate ignorance, my job this afternoon was to educate! Today I had the grand opportunity... YES OPPORTUNITY, not misfortune, of running into someone blissfully unaware of how great DS is! I had the opportunity to share the LOVE and JOY of DS, and because I was unprepared, and caught off guard, it put me on the defense. It was my job to promote a spirit of love and awareness, and in every way I fell short.

Having said all that, I believe today was not a total loss! I have learned so much from this occasion, an I am certainly "armed" for the future. The feeling of empowerment I have right now is amazing! Chris and I have decided to make little business card fact sheets to carry with us in our wallets and share on moments like today. Our goal is to advocate for our son, to eliminate misconceptions, and to illuminate the positives of DS(and there are many!!). Hopefully this type of preparedness will allow us to think clearly in the face of adversity, and will enable us to teach BOTH of our sons to advocate for DS in a positive manner. The world isn't going to change it's perception over night, but the greatest impact we can have is going to happen one person at a time!

As for what should go on the card (and these are just ideas at the moment)...

1. Down syndrome is the result of having 47 chromosomes instead of 46. Individuals with DS are "extra" special!

2. Down syndrome is not a curse, or even a misfortune -- It is a BLESSING! I feel like a broken record here, but it needs to be said!

3. People with Ds are not scary, or "stupid", and they have feelings. They have love and faith and hopes and dreams, just like the rest of us.

4. The infamous "R" Word... It is just as bad as the "N" Word,when it comes down to it, and people throw it around as a casual insult. Maybe the card should read "The R-Word hurts... Please don't use it!"

5. The only difference between a person with DS and the "average Joe" is that people with DS are warriors from birth. They face challenges everyday that most of us take for granted, they shatter boundaries, they break the mold, they show US how to live.

Even facts might be good on there... Did you know that there is currently a waiting list in the US to adopt a child with DS?? The secret is out!

OK, I can think of a TON of other things I would like to add -- Maybe we should pass out poster boards instead of business cards!

What would you like to put on the card? I would love to hear suggestions! :)

I will write more SOON... It has been WAY too long since my last blog!