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

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....

0

Christmas Memory

Aidan slept in our room for the first three years of his life. That was the easiest arrangement for us to manage his g-tube feedings. When Liam was four and Aidan was two, Liam asked if they could have a sleepover on Christmas Eve. While we were confident of Aidan’s stellar breathing skills at that point, it was still a big deal because he wasn’t really a champ at holding his head up. We tucked...

2

Parent’s Perspective

Abby is a pediatric OT and her blog has oodles of information from therapeutic toys to ipad app suggestions. She also hosts a column on parent’s perspectives. I feel pretty strongly that parents benefit from hearing each other’s stories. So, I’m over there today sharing mine. Please check it out and share Abby’s blog especially with the special educators in your life.

2

Sandy Hook

No, I really have little to add to this conversation. It’s too hard and heavy and draining and I think it’s all been said and I’m not sure the internet is always the best place for these conversations. That being said, as a Connecticut native, I know I have New England readers who may not be reading all the same blogs that I love. Allow me to share my favorite responses: Here is a mom...

1

How to Use a Runaway Truck Ramp – Book Review

Shawn Smucker is an entrancing story teller. His latest book, How to Use a Runaway Truck Ramp,  beckons you to sit around the campfire and listen to tales of adventure complete with grand scenery, internal conflict, heartwarming characters and at least one death defying experience.  Shawn, his wife Maile who co-wrote the book, and their four young children set out on a four month long road trip on a bus. Yes, the idea sounds a little...

0

Becca

At Thanksgiving, the young grown ups took a place in the hot seat and answered questions from the old grown ups. I don’t love this. I’m an introvert who can’t stand being put on the spot. Also, they were making us wait for dessert, which is ridiculous on so many levels. So, my sister Becca and I went together in solidarity. They asked us what we thought was the best quality of the other. Easy…...

2

Thankful Thursday – Affirmation

Today I’m thankful for the affirmation that I have great doctors. There can be a rift between patients and the medical community whether it be from fear, communication barriers, or power disparities. Just last week I ran across both a medical professional and another parent who know Dr. Hip who is performing Aidan’s surgery in March. The medical professional assured me of Dr. Hip’s knowledge and experience and the parent spoke of his great compassion....

4

Putting on Your Oxygen Mask

    November is over and we’ve already forgotten how stuffed we were with turkey and chocolate. It’s excellent to have a time of year to collectively focus on gratitude, and certainly that’s a quality we try to cultivate at all times. Often it’s the “counting blessings” frame of mind that gets us through difficult times. Many of us are able to find the good amidst even the most painful challenges.   What if our...

5

Aidan’s Smile

When I see Aidan smile, I know he understands love and family; he knows who I am; he’s in there. Having a child who is non-verbal is frustrating on so many levels. I’ve often been asked what he understands. Because he doesn’t have a consistent communication method, it’s hard to know. Sometimes people wonder if Aidan recognizes them. Certainly there are professionals in his life that have to “prove” his knowledge and keep accurate data...