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Posts tagged with: Parenting A Child With Disabilities

The marshmallow game

March 27, 2009 by Bill Strong


Gwendolyn loved the game Gramma brought with her this week. It was simple...stack a bunch of marshmallows and knock them down. The marshmallows were a great idea; small enough and light enough for Gwendolyn to hold on to. Although Gwendolyn loved the stacking and knocking down, her favorite was...
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Shaving Cream Painting

March 24, 2009 by Victoria Strong

Gwendolyn gets to do all sorts of fun things with her awesome therapists. They bring so many new toys, books, and ideas. She absolutely loves her time with them and wants Mommy to shoo the second she sees her pals. The picture is from a day that they brought shaving cream and she got to try "Cloud...
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"What happened to that baby, Mommy?"

March 20, 2009 by Bill Strong

I've grown accustomed and more or less oblivious to prolonged looks of curiosity and silent sympathy while out on walks with Gwendolyn. They don't bother me anymore, really they don't. The only thing that matters in that moment is that I'm out as a proud father walking with my precious...

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VIDEO: Gwendolyn playing the monkey game

March 14, 2009 by Bill Strong
Thanks to our friend Laurian, "Monkeying Around" has become one of Gwendolyn's favorite games. She loves helping us hang the monkeys on the tree, one by one, in anticipation of which monkey will send the tree canopy crashing down. She giggles through the whole thing.

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Grumpy Bear

March 13, 2009 by Victoria Strong

Gwendolyn usually wakes up with a big smile, ready to play. But, lately, my sweet little sunshine has needed some extra coaxing...and big snuggles. Since Gwendolyn decided she only needs one nap a day and since that nap went from one hour to an hour and thirty minutes, those last thirty minutes...
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VIDEO: Gwendolyn playing soccer goalie

March 10, 2009 by Bill Strong
I can't tell if Gwendolyn is really enjoying this or not smile

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Music Class Update

February 27, 2009 by Victoria Strong
I have been meaning to update about the music class for several weeks now. Although the first class was difficult, I realize now it was more about me grieving for a vision I had yet to let go of, an idea of what being a mother would entail. We are now on our forth week and it is absolutely the...
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Snuggle singing with Mommy

February 26, 2009 by Bill Strong

Recently, Gwendolyn has been tolerating being elevated more often, on and off bi-pap, and we've been finding more creative ways to try and encourage her to do so. I just love this picture of Gwendolyn in Mommy's arms having a good snuggle singing session right before Gwendolyn's bedtime.
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Little monkey

February 21, 2009 by Bill Strong

Gwendolyn, fresh out of her bath and ready for bed. She loves helping me brush her hair - every morning and especially after every bath. She just lights up when I ask her if she wants it brushed and she knows right where to look in the closet when I ask her where her brush is. She even likes to...
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Just A Petition

February 20, 2009 by Victoria Strong
I think, perhaps, I am obsessed. No, I know I am. Each day I check the petition, multiple times a day actually. I read the comments people write and the places they are from. I look for patterns to see what outreach efforts have worked. I think about how to reach more people, how to gain more...
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BIG Girl

February 19, 2009 by Victoria Strong

Gwendolyn officially graduated from baby "Swaddler" diapers to "Cruisers." She is very curious about her new purple "Big Girl" diapers and stares at them with a mixture of seriousness met by joy -- I think it is pride. Yes, our little baby is getting so big and she knows it. She loves to be Mommy's...
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25 Honest Things

February 10, 2009 by Bill Strong

  1. I've come to terms with the fact that I'm going to lose Gwendolyn to SMA, but I'm terrified of watching her slip away from me
  2. I appreciate when people ask questions about Gwendolyn; I hate when people don't and instead choose to make ignorant assumptions
  3. I worry about our $5mm health insurance cap...
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VIDEO: Gwendolyn playing independently

February 10, 2009 by Bill Strong
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Lazy Rainy Days

February 07, 2009 by Victoria Strong

Last night I had a serious talk with myself about providing more learning opportunities for Gwendolyn. I stayed up late researching ideas, thinking of ways to adapt toys, and things I can do differently so that Gwendolyn is mentally stimulated. I continued the serious conversation with Bill this...
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New Tricks

February 06, 2009 by Victoria Strong

Gwendolyn has now mastered several new tricks that we, of course, continue to ask her to perform. And, like the good girl she is, she appeases us until, well, she's had quite enough...

No Nod: Gwendolyn has been shaking her head "No" for months, but it is only recently that she does so with...
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Music Class with Gwendolyn

January 30, 2009 by Victoria Strong
Today was the first day of our speech therapy music class that we recently enrolled in through Tri-Counties Regional Center (a State program for people with disabilities). And while Gwendolyn enjoyed it, it was a bit emotional for me. We will keep going, as I will do anything for Gwendolyn, but it...
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Spa Gwendolyn

January 30, 2009 by Victoria Strong

Gwendolyn has been having extra trouble being held upright lately because her top teeth are coming in and the extra drool makes it hard for her to swallow. (Teething is my nemesis!!!) We like to hold Gwendolyn (for obvious reasons), carry her around the house, and give her time off her back. She...
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Accessibility for the disabled (update 2)

January 24, 2009 by Bill Strong
Quick update. Things seem to be moving in a positive direction with regards to my plea to the City of Santa Barbara to make the dangerous sidewalk ramps in our neighborhood accessible to the disabled.

I received an email yesterday from the Streets Capital Improvement Program Manager for the City of...
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It Is A New Year

January 08, 2009 by Victoria Strong

We had a wonderful visit with my sister and her family, but are now getting back into our routine. There is, however, a sense of newness. For one, we are in a much different place than we were when Gwendolyn was first diagnosed. It isn't a place without grief, fear, or heartache, but it is a more...
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Cupcakes and football

January 06, 2009 by Bill Strong

Yesterday, we took one last stroll with our nephews and Victoria's sister to CrushCafe for lunch and cupcakes and to the courthouse courtyard for a friendly game of football.

Gwendolyn loved the football game; especially when Mommy rolled her around in her stroller "tackling" everyone smile Her face...

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