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
Dear Secret Donor, I know who you are. I may not know your identity but I know who you are. You are kind. You are giving. You are generous. You are selfless. To give a little back story, I experienced something truly remarkable a couple weeks ago. I sat on the story and thought about
Today was a big day for our family. We purchased our wheelchair accessible Toyota Sienna! We were given an amazing deal by a very generous woman in our community. She knows of the struggles that come along with care giving someone with medical needs and limited mobility. We are so grateful for her generosity (and
I know I’m doing the wrong thing right now, but i’m writing while upset. I’m not sure how to respond to some pretty frequent questions. “How is Liam doing?” I’m asked this multiple times a day. The light hearted Betsy will reply “Great! He just joined the 600 Book club in the read at home
There is a common phrase going around, “for every great kid there is a mom who is pretty sure she’s screwing it up”. Well folks, I’m positive I’m screwing it all up. I am exhausted. I yell. I have no patience. I nag. I yell more. I use a nasty tone. I sound rude. I
Update 3/25/15 I’m a firm believer in balance. Our winters can be harsh, but spring is so sweet. We each can have hard times, but things generally work out. The selling of this van has been a beautiful life experience for me. Sure, the money that helps our family move that much closer to our
For most, the word ‘progress’ means moving forward, making improvement, getting better. For those living with Muscular Dystrophy, the word ‘progress’ is a four letter word. It means the disease is showing it’s self. It is something that sneaks up on you and you may not notice the progression until a skill is taken away.
I have been primarily writing of what this disease has done to my life. This is partially because I truly only know my perspective, but also because I’m nervous to share Liam’s words. He is his own person and I don’t want to over expose his personal experiences. This need to protect his privacy must