Liam has had his powerchair for sometime now. He proved to be a very precise driver, with mature spacial sense. His school principal even remarked on how impressed he was with Liam’s driving skills. Liam also recognizes that this tool doesn’t solve all his problems. It’s bulky, the world is not set up
I’m sure some of you, our devoted followers, wonder how we discuss Muscular Dystrophy with Liam. We approach this conversation much the same way you might discuss sex with a child. You answer their questions, but don’t go further than what they ask. When they are ready for information they will show you. With Muscular
I sat quietly and watched. I watched as my son, with the body of a boy void of all baby fat, played quietly in the bathtub. I promised myself that I would not rush him, I would wait until he was ready to get out. I would wait until the water became cold and the
I grew up with two older brothers, and I always imagined that I would have three children in the family that I created. Two big brothers and a baby sister. I always liked having big brothers who would keep me in line, tease me relentlessly and love me unconditionally. This was my idea of a
Liam received his new power wheelchair a couple weeks ago. He was so excited to get his new chair, and go as fast as possible. He told me he wanted to feel the wind in his hair and he wanted to be faster than his friends. When we put in the order with his team
Going on a vacation with small children takes a lot of planning, flexibility and patience. Travel is something that I see as a requirement for life. The world becomes a little bit smaller with each passing mile. New people and new places show you that we are all the same when it comes down to
I may have rose colored glasses about my childhood, but I was pretty lucky. My parents adored each other, my brothers and I were healthy, active and all around good kids. We had an army of mothers, that we referred to as the “mommy collaborative”, who protected us and watched over us as their own.
My saving grace, my darling Lydia. Lydia is my spunky little mini me. She is my hilarious, vivacious and adorable little shadow. Her beautiful curly hair, chubby baby cheeks and big brown eyes make my heart over flow with love. Lydia was eight weeks old when Liam was first diagnosed. At just eight weeks she
So many of my blog posts are about the hard times. Yes, things are hard, but they are also immensely happy too. Liam wears glasses now and every time that I look at him I think, “who is this big kid, this fresh faced thinker, this dude?” He’s stunning, and spectacular and he is a
This past weekend Mark and I attended a conference in Columbus, Ohio on Muscular Dystrophy. We heard about it through our local chapter of MDA and thought, why not? Typically my mom attends all of Liam’s doctors appointments with me so Mark doesn’t have to take off work, and because my mom asks some pretty