There are a lot of ways we can measure our journey with Rett Syndrome. We can measure by the way we have grown and adapted, by what we have done to fundraise or raise awareness. The reality is the most Continue Reading
What being 2 1/2 years old means to us… two realities
I can’t tell you how many times I’ve been asked, “Do you see how well Gray is doing?” “Isn’t it exciting how well he is doing?” “Have you noticed how well he is doing?” I think these are all questions Continue Reading
Starting 2nd grade
It’s finally here. I can’t believe Magnolia is starting 2nd grade. She loves music, mostly #taylorswift and the #lumineers . She loves #adventuresports#familyadventures and watching #fancynancy she loves #harrypotter She will choose to try and #rockclimb over going #shopping . That Continue Reading
Scoliosis, kyphosis and other symptoms causing symptoms?
And now introducing Scoliosis and Kyphosis. Scoliosis is a sideways curvature of the spine that occurs most often during the growth spurt just before puberty. While scoliosis can be caused by conditions such as cerebral palsy and muscular dystrophy, the Continue Reading
Sk8tr girl Surfer girl
I have a skater girl, surfer girl, extreme sport loving girl. I could not love her more. She may not have all of the abilities, but she has the heart. Last year, when she asked for a skateboard on her Continue Reading
Sibling fight
Today we were sitting at our dining table. Maggie wasn’t eating, so we had been sitting there for awhile. Gray had finished his snack, had played with some puzzles and then made his way back to the table. He looks Continue Reading
My new piece on Maggie’s style
I wrote another article for Rett Girl magazine and I hope you’ll give it a read. It’s been hard to try to figure out Maggie’s own personal style, since both AJ and I have our own ideas about what style Continue Reading
My heart broke, but not for Magnolia
Last week I was speaking with a mom with an older daughter with Rett Syndrome. She was watching Magnolia, turned to me and said.”I hope they find a cure or treatment for her. I’d really hate to see that spark Continue Reading
Chaotic and fun travel Part 2 TEXAS
The stars at night are big and bright….(insert 3 claps) deep in the heart of Texas. Since Magnolia was 2 years old, we haven’t gone to Texas in the summer. First it was too hard to travel because of sensory Continue Reading
Chaotic and fun summer travel
A recipe for a crazy but fun summer vacation. Ingredients One crazy independent toddler One amazing and strong kid with Rett, One busy, multitasking and exhausted dad One overwhelmed but happy mom Directions Knead all ingredients together. Add in a Continue Reading