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

8

No Time to Waste

I bought a watch this week. It’s simple and pretty and it tells time. Time flies. Don’t waste time. Time marches on. Time stands still. There’s no time like the present. I bought a watch this week even though for 40 years I’ve never worn one. Well, there was the brief time in middle school when Swatch watches were super cool and I had a black one. It meant I belonged, that I was Somebody. I...

1

No Big Deal

I’m sitting in a hospital waiting room…again. It’s no big deal, really. Just a super fast CT scan of Aidan’s hips to make sure we have all the information we need for his hip surgery in March. The doctor was so kind to attempt the CT scan without anesthesia since it’s only a thirty second scan. Aidan couldn’t do it. He relaxed under the warm blankets and smiled at the radiologist, but he wouldn’t let...

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...