Wednesday, February 9, 2011

And we're off.........

I have decided to create a blog about the process of turning my twin daughters' nursery into a big girls' room! For most parents this would be a very fun & exciting time. For us, it comes with mixed emotions: my twins are severely disabled due to a metabolic disorder called mitochondrial encephalomyopthy.

Maya with a fellow twin

Julia & Maya turn 6 in April, but function on a level par with 3-10 months abilities. They are partially wheelchair-bound, dependant on their energy level. They cannot speak or effectively communicate. They are unable to perform daily living skills such as dressing, bathing, brushing teeth, brushing hair. They do not understand basic phrases such as "Come to Mommy". They have "sensory issues" which results in a love of loud noises, white noise, spinning, swinging, and rocking, but do not know when to stop & sometimes overwhelm themselves. As a result, the girls will require some specialty furniture & all surroundings to be "baby proofed", which gets more difficult as they grow taller & heavier.

Julia enjoying a cupcake at the UMDF swim party

Enough whining-I'm determined to make this as fun of a process as possible! Julia and Maya are adorable (completely unbiased observation) and smiley & will have the best big girls room ever! With this blog, I hope to both inspire & learn from other parents about products, solutions, and life with disabled children  in general. Along the way, I encourage input from design & decor professionals and hobbyists, as well as funding options for such an endevour!


  1. I'm glad you have started a blog! Do you mind if I list your blog on my VLCADD/Mito links page?

  2. Please do! I want to help & also receive input/suggestions from as many parents as possible! We have very limited space & many challenges ahead!

  3. IKEA. Definitely an idea trip to IKEA should be part of the plan.

  4. Can't wait to follow the progress!! XOXO!

  5. Aw, they are getting so big! You are so creative, I am sure their room will be brilliant.

  6. Gina you should TOTALLY email the Nate Burkess show!! A friend of mine did and went out to NY for the show all expenses paid. What a great way to reach out to so many parents in the same boat!! GOOD LUCK