Advocacy

I admit that I am quite new to the world of advocating for persons with disabilities. However, as many mothers of children with Down syndrome, I find that I must be a voice for my child, who cannot speak for himself.

Matthew is 11 months old now, but we have really only dealt with his Down syndrome for a couple of those months. When he was expected to die, that was all that mattered, and we really didn’t think of the Down syndrome very much, except as it pertained to his medical issues. It wasn’t until after Matthew’s heart surgery, when we were home, settled, and recovered, that we really started to think about what it means to raise a child with Down syndrome. What did we need to know in order to be the best parents we could be for Matthew? What did we need to do to address his “special needs?” It was at this point that we met Libby, a mom who had already fully embraced this aspect of her life and become quite an advocate for her little Charlie. She has much to teach us.

It has come to my attention that a new summer comedy movie, “Tropic Thunder,” needs some advocates to speak up against it. I know very, very little about the movie except that its content and language is very offensive to persons with disabilities. Libby wrote a very good post titled “Think about it” regarding this, and I recommend you read it as she knows much more than I do in this area.

There was also a good article, “What ‘Tropic Thunder’ Thinks is Funny” by Timothy Shriver in the Washington Post on Monday.

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We received an email from another great advocate for those with Down Syndrome, Sandra McElwee, asking for support of the “We’re More Alike Than Different” campaign. This campaign needs support, and is a candidate to receive much-needed financial support from American Express. But, it needs your vote! To vote for the campaign, please go to:

http://www.membersproject.com/project/view/SJT6WB

If you are not an American Express member, you can sign in as a guest and still vote. If the campaign makes it to the top 25, it will need your vote again. Then, if it makes it to the top 5, please vote once more!

Advocates CAN make a difference. When people started to speak up, Paramount/Dreamworks altered the movie trailer for “Tropic Thunder” which originally started, “Once there was a retard . . . ” and pulled their promotional t-shirts which sported the phrase, “Go Full Retard.” Honestly. Please do not support this movie!

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Sitting Up and Scooting Forward

Matthew is able to sit up on his own for several minutes at a time now, as long as he doesn’t get distracted by something he wants to go get! He is also starting to scoot forward on his belly, which, combined with his ability to roll, makes him highly mobile! He is definitely going places these days. Here are some pictures from our weekend in Walla Walla:
Sitting up

Sitting up

I know I’m his mother . . . but is he cute, or what!!!
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While I am adding pictures, here are a bunch from our trip to Snowqualmie Pass (July 26th/27th). We had a wonderful time, and all the kids (and adults) really enjoyed hiking and playing outside.

Matthew loved the backpack

Matthew loved the backpack

Happy Hikers

Happy Hikers

Matthew, Amy, Julia, Kathy, Micah, Bernie, Jackson

Left to Right: Matthew, Amy, Julia, Kathy, Micah, Bernie, Jackson

Throwing rocks in the water

Throwing rocks in the water

For Rachel . . . who doesn't hike

For Rachel . . . who doesn't hike

Tired Hiker

Tired Hiker

Picking Flowers

Picking Flowers

Benedict, Matthew’s Prayer Warrior

The handsome young man holding Matthew in this picture is Benedict, a pretty incredible 13-year-old. From the day Benedict heard about Matthew, (over a year ago), he has been his prayer warrior. When the doctors told us there was no chance Matthew would survive, Benedict prayed 3x/day that Matthew would live “so that others would be brought to Christ.” And Benedict has continued to pray for Matthew 3 times per day – morning, noon, and night – ever since.

Benedict and his family were praying for Matthew when I, his own mother, could not. There was a time when it was just too painful to pray. I would cry uncontrollably every time I would try, and I got to where I was just tired of crying. (However, I did pray at one time that Benedict’s faith would not be too shattered when his prayers were not answered the way he expected them to be. God has sure taught me a lesson about having “faith like a child!”)

Meanwhile, Benedict and countless others were praying on our behalf . . . and that was so comforting, and more powerful than I ever could have imagined.

Benedict’s prayer was so hopeful. All I could do was pray for “help,” and that Matthew’s short life would not be too painful. I never dreamed to hope he would live, because the medical science said that was impossible.

During my pregnancy, talk of miracles and “not putting limits on God” could make me roll my eyes or get angry with those who didn’t realize how serious Matthew’s health problems were, or how painful “false hope” can be. For the majority of my pregnancy with Matthew, Aaron and I truly did not think a “good outcome” was possible. Our child was either going to die, or live with severe disabilities – in and out of hospitals for the duration of his life, enduring one painful procedure or surgery after another

However, Benedict’s prayers were different. His prayers were quiet. He didn’t flaunt his hopeful attitude in any way, or insist that we be hopeful as well. Instead, he didn’t even tell us he was praying – rather, his mother whispered it to me one day. And, he prayed that Matthew would live to bring others to God – for the Glory of God. Not so that we would be spared the pain of losing a child, or so that we wouldn’t have to suffer – but so that Matthew could glorify God with his life.

Thank you, Ben! You are quite a powerful prayer warrior, and it means more to us than you’ll ever know. God has given us a miracle in our child, and we have no doubt that all the prayers he received have a lot to do with that. It is wonderful to know that Matthew will have a friend and a roll-model in you for years to come.

Benedict holding Matthew

Benedict holding Matthew, November 2007

Aaron and I often receive compliments regarding Matthew, and our response is usually “Thank you, but we really haven’t done much!” The Glory here really belongs to God. Matthew himself has been incredibly tough and strong, but we just made the best decisions we knew how at each step along the way. We did choose life in a situation where other may have not, but that was the easiest of the decisions we had to make. I ran across this quote the other day which reminded me of that. Here is a quote from another Benedict:

“The cult of material possessions, the cult of possessive love and the cult of power often lead people to attempt to ‘play God’: to try to seize total control, with no regard for the wisdom or the commandments that God has made known to us. This is the path that leads towards death. By contrast, worship of the one true God means recognizing in Him the source of all goodness, . . . that is the way to choose life.”

Pope Benedict XVI World Youth Day in Sydney, Australia 7/18/2008