Thoughts on life, disability, and the power of connection.

13

Bleeding Words

I wrote words on my walls because words matter, because the walls were coming down, because the words were more than words; they were my bleeding soul. I wrote words on my walls because I knew I would smash them down and somewhere in there I wanted those words to come alive, to be real; I wanted to destroy their truth and not just their letters. I wrote words on my walls because my soul...

6

Stand Up and Value Others

Martin Luther King Jr. Day is my favorite holiday. It’s a time to remember that words and actions have power; a time to reflect on why we perceive people in categories of “us” and “them.” It’s a time for hope when we realize that, though we still place less value on “others,” that can change. My family reads MLK’s “I have a Dream” and Letters from a Birmingham Jail every year to connect the past...

2

Thankful Thursday – Siblings

Today, like so many days, I’m thankful for the wonderful relationship that Liam and Aidan have. Liam loves to make Aidan laugh and he’s very helpful with his brother. Aidan thinks Liam hangs the moon. Our sibling relationships are our longest lasting relationships and I’m thankful Liam and Aidan’s relationship is so strong. Liam is guest posting today about Aidan over at Adventures in MattyLand…check it out. And watch this video for another inspirational sibling...

12

One Word

I’m not a joiner and as much as I’ve enjoyed reading people’s One Word posts, I didn’t plan on participating. The One Word project is a challenge to choose a word that resonates with the core of your being, a word to focus on throughout the year that may shape your world. Three words have actually already done that for me in the past few years – balance, community, and gratitude. They’re weaved into the...

1

Wheelchair Diving

  — 1 — True story: I went to the gym this week with a personal trainer. He asked, ‘You’re 40, right?” I was shocked and offended, even though, yes, I’m 40. I was prepared to DENY DENY DENY when I asked him accusingly, “Why do you think I’m 40?” There was no way he could win that one, right? He replied, “I looked at your chart.” Oh, ok. Rational, researched facts for the win....

4

Yale Recap

Aidan and I went to speak to a group of pediatric nurses at Yale in November because we’re all that. This is one of my favorite gigs. Families and medical staff are partners in our children’s health care. It’s important to acknowledge the information gap and work together. I’m not a trained medical professional so I do need the expertise of Aidan’s doctors and nurses. I do, however, know Aidan quite well and am the...

11

He’s Famous!!!

This is Liam checking himself out on the cover of Pediatric Nursing Journal. Let me repeat that, HE’S ON THE COVER!!! Oh wait, not only that, HE WROTE THE EDITORIAL in this edition. My baby is a published author!!! I’m not even jealous because I’m so stinkin’ proud of him. Liam had the opportunity to write about his experience as Aidan’s brother. It took about six months… really. The truth is, he doesn’t know what...

2

Snippets of Siblings

— 1 — So we all know that disability effects the entire family, right? While we as parents do our best to maintain balance in our lives and form healthy habits to manage stress, it can be more difficult to be a sibling of a child with a disability. But it’s certainly not all bad… — 2 — Check out this incredible video of a girl who has a twin sister with Cerebral Palsy. You will...

9

Ok, Maybe He IS Romantic

Instead of doing a year end favorite blog posts wrap up, I’ve decided to recant one of my most searched for posts. This is not a marriage blog; it’s a journey through Disability World blog. Yet people find me by googling, “My husband is not romantic.” If you found me that way, first let me say, I’m so sorry about your husband. Join the club. I’d also like to say, I’m so sorry this blog...

7

A Picture’s Worth

It’s a scene that happened all across the world on monday night: A church service of lessons and carols to set the stage for Christmas. After an hour of hearing the familiar Bible story of the birth of Christ and soaking in words of the Peace and Joy of the season, we get to light our candles and sing Silent Night. The familiarity of the words give everyone a moment to reflect, contemplate, and anticipate....