Thursday, December 31, 2009

Monologue to God

I want to take a minute to publicly thank God for 2009. I hope you don't mind (and, if you're not of the same mindset...I hope it won't send you running to the hills. :)

I praise you, Lord, for increasing my faith.....for showing me that even when all is stripped away, You are here.......and you are enough.

I thank you for my sweet Simeon. Thank you for allowing instant/intense love for a little boy who continues to change our hearts and lives in so many ways. Thank you for introducing us to the amazing and wonderful club of Down syndrome and for giving us a blogging family of parents on the same road.

When Shawn decided to quit his job and become self-employed, we never dreamed we would be walking the Ds road at the same time. It could've been such a disaster, but You made him successful......always supplying job after job and using his flexible schedule for the benefit of our family. You knew that with heart surgery, extra appointments, and therapies, there was no way we would've survived (let alone thrived) with his former schedule and You put this on his heart for this reason. Your timing, as always, was perfect.

Although I'm not through it and have no complete resolution, I'm grateful that You love me enough to challenge my theology. You have given me the desire to question everything I thought I knew, knowing that I would eventually land at truth.....that You are real and that You care......and that all the extraneous, meaningless crap would be filtered out.

Thank you, God, for my family, for allowing me to be a sahm for the first time, and for teaching me to enjoy the chaos.

I know I complain about this often, but I really do thank you for making me the kind of person who wears her heart on her sleeve with a complete inability to live, or even vacation, behind any kind of mask.

You are good. While the circumstances were hard, I know that I'll remember this as one of the best years, yet.

Sunday, December 20, 2009

All I want for Christmas...

I need a friend. I could not imagine my life without my blogging friends who share this journey with me. Truly, they are a gift from God. But, I would very much like to have a real-life, flesh-and-blood, local friend to ride this ride with. I long for playdates, therapist comparisons, and a familiar face at those awkward Down Syndrome Association parties. I am so blessed to be part of the Ds community, and yet, I'm feeling kind of excluded from my real world.

Part of me is struggling a bit with Down syndrome right now. Eon will be a year-old next month and for a year, I have been almost consumed with all things Ds. It has been a necessary immersion. I have become an expert in order to best advocate for my son and to meet his needs. I don't know if my melancholy mood is because I feel the interest and support's been a year; get over it already. Friends are moving on. But, I never will. This is forever and I am feeling small.

Maybe it's because Eon's delays are starting to become more noticeable and I can't slide under the radar anymore. I don't compare him, but I feel like others do. Maybe it's because the finality of it all is finally penetrating my thick skull.

The conflicting feelings of this year have been, because he's so incredible and sweet and hilarious; sadness, because of what might have been; fear for his health and well-being; contentment to be part of the club; anger over the senseless slaughter of so many of his peers; and certainty, because he is exactly who he was created to be.

Yesterday, I almost lost it when I heard "Joseph's Song" on the radio. "Why me?" is a feeling I identify with at times. I sometimes want to ask God, "What were you thinking? Why would you think that I can give this child what he needs? Why did you decide to choose me for the task?"

And, sometimes, I feel blessed beyond measure and unworthy of such a gift.

Wednesday, December 9, 2009

Should we be vetting the professionals who work with our kids?

I first heard the word "vetted" during last year's presidential election. It was used describing the background checking (or lack thereof) of Sarah Palin, once her teen daughter's pregnancy hit the news.

Recently, I came across an online discussion between women who have terminated for Down syndrome. They were discussing the thought processes behind their decision and lamenting the fact that they were unable to share their decision with people for fear of judgement. It was a fascinating discussion for me, until I came upon the post from a woman who works in special education. She shared that a colleague of hers really helped her make her decision to terminate by reminding her that, not only was she doing what was best for her family, but she was also doing what was best for society. Yikes!

It's disturbing that someone who works with people like my son would choose termination for her own pregnancy, but that doesn't necessarily disqualify her to me. I realized a long time ago that a 90% termination rate means that I likely interact with women all the time who've aborted their baby with Ds and I'll never know. But, to have the mindset that those with Down syndrome shouldn't even be members of society and then to work in special education absolutely blows my mind. Unfortunately, it got worse. She went on to say, "People don't condemn others for putting a sick dog to sleep. It's considered humane."

I cannot possibly believe that this woman and her colleague will have the best interest of my child at heart when they don't even feel he should live! I can't imagine that they will really work to help him meet his goals and his full potential.

How many people like these women work with children or people with special needs? Today, I read about a child with Ds who had been repeatedly "put in time out" in a bathroom, with the lights off by her special education teacher. The TA finally reported it and the family discovered the atrocity as authorities were trying to sweep it under the rug. I have always said that some people should be hanging wallpaper for a living and I think that applies here.

Throw in the former special ed teacher I met in Panera a few months ago who asked me, "Wouldn't it be great if we all had Down syndrome...and were able to beat the crap out of someone and get away with it?" and I'm starting to get a bleak picture of Eon's school career.

I have decided that I'll be doing a little vetting of those I let work with Eon. I will be asking direct questions to determine underlying belief systems. I want to know that those I allow to help us are truly for him.

Sunday, December 6, 2009

Signing success!

Eon has been adding some signs. Since his initial "all done" sign after a meal, he has added "daddy", "mommy", a variation of "Michaela", and waves "hi" and "bye-bye". I admit to wondering if his signing was truly intentional or if his thumb just happened to be near his face at the time. The other day, Shawn walked into the room and said, "Hi, Eon!" He was rewarded with a huge grin, a wave, and the sign for "daddy"! No doubt that it was intentional. I was talking to our service coordinator about it and said, "He can sign 'mommy', too." As if on cue, Eon grinned really big and put his thumb to his chin.

I think that's pretty impressive for only ten-months-old!