Bertrand and Victoria spent 10 days at Camp Nana & Papa. Despite a bout of the flu they still had a blast. Here are some of the great photos we got while away. We missed the kids so much! Can't wait to hug them in a few short hours. :)
January 14, 2013
This is a free event for families dealing with autism on January 28th at Discovery Gateway. It will be a fun way to connect with other families and researchers in the Utah autism community.
Also, if your child has autism and/or developmental delays but is undiagnosed, the kind folks at Lineagen (like my amazing friend Karen!) will be there to answer your questions. :)
January 11, 2013
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Bertrand is nearing 50lbs. It's a growing challenge getting him in and out of the house, up and down stairs, and using the bathroom. Safety is a huge issue. I fell down the stairs carrying him when I was 6 months pregnant with Victoria, and Bertrand was just 40lbs then. I am forever grateful that only I got hurt that time.
So, I was excited to get in contact with the folks over at ASSIST today. ASSIST Inc is a nonprofit Community Design Center founded in 1969. ASSIST provides architectural design, community planning and development assistance to nonprofit and community groups, and housing and accessibility design assistance to low income households or persons with disabilities.
We have an appointment in three weeks (on February 1st) for property inspection and measurement. Then in approximately 2-3 weeks, an ASSIST representative will be back with architectural plans and cost estimates, so we can start saving and budgeting for the remodel. They also have a list of contractors we can contact for any project we choose to undertake.
We're looking to improve the accessibility to the back of our home (think: ramps) and remodel our first floor bathroom so Bertrand can use it. (It would be nice to give him a shower or bath and not almost break my back or knees in the process.) Those new kitchen counters will just have to wait.
The first floor playroom is morphing into his big boy bedroom.
The last few months, my heart has been heavy with the dawning realization that Bertrand's bedroom would have to be moved downstairs. It's silly, but decorating Bertrand's first bedroom was symbolic for me. At the time he had a projected 18 more months to live, but by setting up his room I was signaling to everyone, especially myself, that he was here to stay.
It was a monument to my love for him, and to the boyhood I believe he deserves.
And a wholehearted acceptance of the vulnerability that by nature is required to love him.
I am sad that he'll no longer be in his beautiful room. And I am sad that (despite video baby monitors) he will be on a different floor from the rest of the family at night. I don't want him to ever feel different or less loved. It hurts me that this is his reality.
But, I know Bertrand will be fine. We'll find a way to make his new room wonderful. And Victoria can sleep over as often as she wants--same goes for Penny, his best furry friend. (And his Mama too.) And I know he'll enjoy less-achey parents. He'll be happy. He always is.
*Sigh* I guess even hearts can have growing pains.
January 5, 2013
Bertrand attended his first ever movie at a theater courtesy of Hope Kids.
It was Peter Jackson's "The Hobbit".
The showing was early in the morning before the theater opened and for HopeKids families only. The audience was full of sympathetic souls who would understand if Bertrand got over-stimulated or vocal.
Still, we were fully prepared to carry him out of the theater if necessary.
But we shouldn't have worried. Bertrand was amazing! He genuinely enjoy the movie. Moreover, he was well-behaved and attentive for the entire three-hour film! We were shocked and oh so proud.
I see more movies in his future. :)
January 3, 2013
|Abuelita Elisa, Abuelito, and Bertrand (2008)|
If anyone could be described in one word, Abuelita's would be "Optimism". Despite a hard life, she was a perpetual ray of sunshine.
She inspired those around her with kind words and a generous nature.
Abuelita Elizabeth was my role model. Even though our physical distance was great, she was never far from me in spirit. I (try to) channel her positive attitude daily.
When I look at Victoria, I see Abuelita's empathy and cheerfulness.
When I look at Bertrand, I see Abuelita's undefeatable spirit.
We are beyond lucky to have had her in our lives.
|Cristina, Abuelita Elisa, Belinda, and Sabrina (circa 1992?)|